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Personal Experiences & Notes On

the Care of a Child with Imperforate Anus

 

 

 

 

NOTICE

 

The relevance of any information contained in this document to a particular person

should be discussed by the family with their own physicians. I am not a doctor and

can not guarantee the accuracy of the information provided here.

Most of the information herein is from the 1997-2000 time period.

 

 

 

 

 

Updated: January 4, 2007

 

karen-iadoc@nc.rr.com

©1997-2007

 


 

Introduction - How to Make the Best Use of This. 5

General Information. 7

Health Resume. 7

Medical Records 7

Choosing a Surgeon. 9

Deciding to do Elective Surgeries 13

Deciding to do Diagnostic Testing. 13

Deciding which Doctor to Listen To When Given Conflicting Advice. 13

Educating Your Pediatrician. 14

Understanding The Value of Your Opinion. 14

Hospital Staff 15

Anesthesia. 16

Preparing for Surgeries 20

Insurance Tips 22

Medical Tax Deductions 25

Travel and Accommodations 25

Happy Endings 30

Dealing with Grief 32

Handling News of Another Problem.. 33

Latex Allergy. 34

Kidney Reflux. 48

New Colostomy & Pullthrough Operation. 51

Single Surgery Option. 51

Colostomy Care. 52

Loop Colostomy. 56

PULLTHROUGH.. 57

Dilitations 60

Prolapse. 62

Colostomy Closure. 67

Feeding and Length of Hospital Stay. 67

Distal Colostogram.. 67

Golytely Bowel Cleaning. 68

Pain Killers 69

Diaper Rash Treatment 69

Foods to Prevent Diaper Rash. 70

Incision. 70

Constipation. 70

The Long Term - Stephen’s Story. 70

To Avoid Constipation. 71

Signs of Constipation. 72

To Check for Impaction. 72

Treating Impaction. 73

Scar Tissue/Adhesions 74

More on Diaper Rash. 77

Fissures 82

Developmental Issues. 83

Dealing with Fear of Doctors 83

Infant to Preschool Developmental Help. 83

Day Care/Pre-K Public School 84

Kindergarten Testing for Public Schools in CA.. 85

Elementary School Issues 86

Growth/Size Issues 94

Swimming in Public Pools 96

Teens - Letting Go. 97

Keeping It a Secret 97

Giving Medical Updates to Family and Friends 99

What, When, and How to Tell Your Child He is Different 99

Answering Why When Our Children Ask. 101

Laxative & Constipating Foods. 107

Tracers 107

The No Nonsense Approach to Discovering Food Affects 107

Constipating Foods 107

Laxative Foods 108

Foods which tend to Stimulate the Bowel Into Action. 110

Fiber. 110

Food Products for Treating Constipation. 113

Serving and Baking Tips 115

Getting Water into Kids Tips 116

Dealing with Diarrhea. 117

Feeding Tips 119

Laxative Information. 120

Managing with Diet and Medications 120

Laxatives Classifications/Types 121

Safety and Side Effects of Laxatives 135

Supplies 142

Associated Tips from PTN Moms 152

What PTN Adults Used Growing Up. 156

What PTL Members Are Using. 156

Toilet Training. 165

Sources of More Info on Bowel Management 177

Alternative Treatments 178

Motility. 186

Enemas. 193

Considerations of Doing Enemas 193

Administering Enemas 205

Going from Enemas Back to Laxatives 226

Alternatives to Enemas - Cecostomy and Malone. 227

Tethered Cord. 259

High Risk Indicators 259

Genetics Research Study Participants Needed. 260

Symptoms 261

Testing. 263

Pediatric Neurosurgeons 267

Deciding to Operate. 267

Experiences of PTL Kids 269

Post Surgery Care. 274

Retethering. 276

After Effects/Side Effects of Tethered Cord. 276

Sources of More Information. 278

Similar Problems 281

Bladder Issues. 284

Web Sites. 292

Appendix A - Detailed Outline. 295

 


Introduction - How to Make the Best Use of This

 

This document came into being from a combination of factors. First, the pullthrough list archives prior to Jan. 2000 are no longer accessible. I had saved many notes on various topics relating to Stephen’s problems that I thought could help other parents. Second, there are parents who have no computer access who could benefit from the information on the PTL list serv and on the web. Finally, and most importantly, my husband and I felt strongly that God was calling me to organize the information I had to help other parents. So, I dug out all of my saved notes, articles, PTN newsletters, etc. and attempted to summarize, assemble, and organize the information. Like many projects, this one soon took on a life of it's own. I offer this as incomplete in two ways - 1) information on urinary, kidney, and other problems is very limited because Stephen doesn’t have these problems and I know very little about these subjects 2) I did not include much detailed medical information. The PTN articles and Pena journal articles are just too good to be summarized. They need to be read in their entirety. In addition, my focus was on helping parents take care of these children not on learning the biology of the problem.

 

Because this document came into existence topic by topic and was never really conceived as a whole until late in its development, the organization of information is not optimal. For example, information on supplies and web sites can be found in special sections with those respective titles and yet website and supply information is scattered throughout the document as well and NOT necessarily duplicated in the supply/web site section. I thought about trying to duplicate all of the information but the document seems long enough already! I recommend at least scanning all of the subtitles (see Appendix A which is a detailed table of contents) to be sure you really get all the information you want on a specific topic. Another option is to download the document from the PTN website and then use a search option in a word processor to find what you are looking for. I will try to keep this information current as I have time. Please let me know if you find any information that is incorrect, outdated, etc…

 

I have tried to always include the source of information so readers know where to go to get answers to questions. I am not in the medical profession so my knowledge is limited. I apologize in advance for any errors of content, typos, etc. This document is really a collection of other peoples’ wisdom. It is the result of the unselfish love and efforts of countless people. I can’t even begin to name them all but you will see their names listed throughout the document. Last names have been removed for privacy reasons, except where medical professionals or authors of published articles are being referenced. I know that all of these folks have made a difference in Stephen’s health care and quality of life. I pray that the information provided here will help readers take better care of IA children, invest less time doing so, and relax more. But, mostly, I thank Jesus for Stephen - and all of the other IA children - who are such blessings and bring us such tremendous joy! No matter how old your child is, please take the time to read the sections on latex allergy and tethered cord. If you do, you may prevent your child from acquiring latex allergy and from losing urinary continence, having pain, etc.

 

 

General Information

 

Health Resume

The PTN newsletter, Vol. 5, #5, December 1996 recommends making a “health resume’ for your child. It is essentially a summary of a child’s medical history which can be handed to doctors and hospital personnel. A sample is given in the article. The main sections include the following:

 

A brief overall health summary

Surgeries - date, hospital, surgeon, type of surgery performed, etc.

Current Medical Care - this should be broken out by sections such as orthopedic, anorectal, urinary, renal, etc. and should include the current status/treatment.

Current Medications - type of medication, dosage, when started, what it is taken for. If you format old medications as hidden text rather than erasing them, you will have a history of every medication your child has been on. I also added the date the medication was stopped. Finally, I have listed some over the counter medications here as well as this is frequently something doctors want to know about.

Allergies - don't forget latex if appropriate. Note: this is appropriate for anyone w/ a neural tube defect

Current Doctors - name, specialty, phone number. Doctors whom you are no longer using can be put in hidden text. You will be surprised how quickly you forget their names or misplace their phone numbers.

 

I recommend adding a “Date Last Updated”. For infants, the most recent weight and date taken is also helpful information. I have found this resume to be invaluable and highly recommend making and maintaining one!

 

Recently, I saw an article on the information a parent should have on hand in the event of an emergency. The list included some of the things above as well as blood type, weight, age, any vitamins or herbs taken, any insurance information, immunization information, and any recent changes in sensory abilities (sight, hearing, taste, touch, smell).

 

Medical Records

Getting a Complete Copy

When I requested Stephen’s records from Duke Hospital when he was 14 months old, I was appalled and amazed at how much information was missing! Apparently, the various clinics did not send a copy of all of their records on Stephen to the medical records department and I ended up having to contact the clinics directly to ask for copies of test results, clinic notes, operative reports, etc. Of course, the clinics tried to send me to the medical records dept., but when I explained that the medical records dept. did not have the specific items I was requesting because they never sent them in - i.e. their error - they were willing to mail them to me directly at no cost. If it had been more than 14 months, I might not have remembered/realized that the hearing test, chromosome test, etc. were missing and I never would have gotten a copy of those items nor would any doctor who requested Stephen’s records because they simply wouldn’t be there.

Keeping Your Records Up to Date

During each hospitalization, ask your pediatrician and the attending physician at the hospital to send you progress reports, discharge summaries, and operative reports. Request copies of all mail sent between your child’s physicians and of any lab/test results.

Costs, Places, and Forms

Most hospitals/doctor’s offices charge for copies of records if they are requested by the patient but they are free if requested by a doctor. Some places charge a flat fee and others charge by the page. Copies (or originals - see below) of x-rays, MRIs, etc. must be obtained from the radiology department directly not hospital medical records. In all 3 cases (hospital, doctor’s office, radiology), you will probably have to fill out a “permission to release records” form. Obtaining copies of records can take weeks so don’t leave it until the last minute.

From Betsy (mom to Matt, age 14, HIA)

If you do not know what you want copies of and do not want to pay per page to have the entire record copied, you can request to review the records. Hospitals and Doctor's offices must allow you to have access to your records, if they don't you can (and should) report them to the state board. If you request to review the records they will generally arrange for someone to sit down with you while you review the records. Since they are legally responsible for the records, they cannot just hand them to you to review. Once you have looked through the records, you can then request copies of specific documents. That will save you money and will allow you to just get copies of the essentials.

Legal Rights

From Bonnie

In an attempt to get the "final word" on a patients legal rights to their own medical records (and a parent's legal rights to their child's) I e-mailed the Department of Health and Human Services to see if they can give us a definitive answer. Below is the reply that I got:

Thank you for your inquiry about the Department of Health and Human Services. Your E-mail will be sent to the appropriate HHS agency for response. If you wish to receive a written reply, please send your letter by postal mail to the following address

>    Secretary Tommy G. Thompson

>    U.S. Department of Health and Human Services

>    200 Independence Avenue, SW, Room 639-G

>    Washington, DC 20201

 

X-Rays

Caring for X-Rays

Don’t leave x-ray films in a hot car. If you take x-rays out on a rainy day, be sure to protect them from rain drops which can damage them.

Copies vs. Originals

From Joe (radiologist, father of John, IA, 3months)

The quality of copies is highly variable. I guess you could ask at the file room where you pick them up for a radiologist or radiologist technician to look at them to see if they are of diagnostic quality. The file room people usually have no idea. Copies are a problem in every file room - the copy film is expensive (up to $5 dollars a sheet) and manually making copies is time consuming. Films sent to tertiary care doctors are often lost so it is probably a good idea to send copies unless you will keep track of the originals yourself. Hopefully the doctor at the receiving end will request new copies if the first copies are not adequate.

A note on any image that is acquired digitally (as opposed to a Chest xray or bone film) - these are usually archived on tape on the machine on which the images were acquired. They are therefore able to make multiple copies of the same "original" copy. Anytime you go for an MRI, US or CT you could ask ahead of time for a copy of the exam if you know you will be taking it to another doctor.

Note: Duke charges $17/sheet and many sheets may be required for a single procedure. For example, an MRI of the spinal cord could be up to 10 sheets.

 

Choosing a Surgeon

Note: No matter which surgeon you choose, it is probably wise to 1) avoid scheduling the surgery over or close to a holiday weekend and 2) make sure the surgeon will be in town for 7-10 days post op.

Excerpts from Choosing A Surgeon, by James W. Fleshman, M.D., published in Ostomy Quarterly, Vol. 35, Number 2

Reprinted with permission. The UOA (United Ostomy Association) can be reached at (800) 826-0826

There are many types of surgeons. A subset includes urology (bladder, prostate, kidneys, ureter), general (which includes surgical oncology, trauma, endocrine, and breast), and colorectal. Each of these individuals carries an expertise based upon training, special interest, and overall experience. I will attempt to give you a surgeon’s point of view on how to choose a surgeon. An informed consumer, i.e. the patient who has reviewed the literature regarding their disease makes a request for a referral to a specific surgeon who has known skills, known outcomes, and with whom the patient can develop a good patient - physician relationship. The following points can help a patient identify a surgeon who is best able to care for them.

1) Match the disease with the surgeon’s specialty or reputation. It is usually best to identify the surgeon who has identified a very narrow area to deal with your problem since the surgeon will have seen the majority of the complications and knows the best ways of avoiding and caring for the problems that arise from the particular procedure.

From Choosing Surgical Options Article in PTN, Vol.6, #4 by Scott B.

Look up articles in the Journal of Pediatric Surgery and see who is doing the writing and who they are quoting. Check the internet and see what you can dig up.

2) Talk to other patients, members of local support groups, or national support groups concerning the disease that you have and the doctor you are considering. Ask them if they would use this surgeon again.

3) Consult the best “doctor” lists both on a local and a national basis. These are usually available at your library or a the local metropolitan medical association.

From Choosing Surgical Options Article in PTN, Vol.6, #4 by Scott B.

If you have family or friends in the medical community ask them to ask around. Ask your pediatrician if he knows of any doctors that specialize in these surgeries.

4) Consult national medical societies for a list of surgeons in your area dealing with your particular disease. (ex. American College of Surgeons, American Society of Colorectal Surgeons)

5) Obtain literature regarding your disease and read, read, read. A working knowledge of a medical problem requires developing a vocabulary and the ability to look at literature from a critical point of view. Doctors and nurses write publications that express their opinions. Not all opinions are correct. This knowledge of the literature also provides the patient with a basis for communicating with their physician. A physician is more likely to explain the details and consider options in a more enlightened manner when dealing with a patient who has knowledge of the disease.

6) Always consider a second opinion. Very few surgeons will be offended if their patient obtains a second opinion.

 

There are several questions which are useful in determining whether a surgeon has the expertise, and is the right one for you. A large portion of the decision is an emotional one and a relational one. The subjective component of the decision can be lessened by asking the following questions:

1) What are my options for the treatment of my problem?

2) What determines whether I can have any of the other options available for the treatment of my problem?

3) Do you have literature on this subject? Have you written any literature on this subject? A particularly helpful source of information is the published results or outcomes of a surgeon’s practice regarding a particular procedure or disease.

From Choosing Surgical Options Article in PTN, Vol.6, #4 by Scott B.

Ask the surgeon if he had special training, how many of these surgeries he has performed and what the outcomes were. Ask the surgeon if he thinks there is someone who can give you a second opinion.

4) Can I talk with other patients who you have treated for this problem?

5) What is the quality of life I should expect after this operation? What is the chance of cure I should expect from this operation? What are the complications of this operation? What will my hospital course (and at home recovery) be like after this operation?

 

Certainly, a surgeon must show that he is willing to answer these questions. In fact, many should be volunteered by the surgeon during the discussion of your problem. If the surgeon is unwilling to answer these questions or hesitates in any way, one might consider a second opinion. The surgeon must display compassion and a willingness to communicate.

From Choosing Surgical Options Article in PTN, Vol.6, #4 by Scott B.

If you don’t understand what’s been said, ask them to explain it again. And if you still don’t understand, ask them again. Have them draw you a picture. To make the most of your fleeting time with a surgeon, read everything you can get your hands on ahead of time so that you can address as many questions as possible. Buy a medical dictionary.

 

From "The Best Doctors in America, The Nation's Top MD's Chosen by Their Colleagues" by Janice Hopkins Tanne in American Health, March 1996

From Andy (Father to Andrea)

Note: There is now a web site where you can access this information for a fee. Remember, this is a business. Also, there are two different services, one for $25 and one for $975. Be careful what you do. http://www.bestdoctors.com/en/default.htm.

The Pediatric Surgeons that relate to our kid's conditions are:

Mark Frederick Brown - LSU Medical Center, Genetic Surgery

W. Hardy Hendren, III - Children's Boston, Thoracic and Urologic Surgery

Alberto Pena - L.I. Jewish, Anorectal Surgery

Selwyn Levitt - Westchester, Urologic Surgery

John W. Duckett - Children's Philadelphia, Continent Reconstruction

John Gearhart - Hopkins, Bladder extrophy, other reconstructions

Richardo Gonzalez - Detroit Children's, Genitourinary Reconstruction

Terry W. Hensle - Columbia-Pres., Intersex, urinary tract reconstruction

Robert Jeffs - Hopkins, Bladder extrophy

Dixon Walker - Shands, Vesicoureteral reflux

This is just a sample, there are scores of other doctors listed under various other specialties.

 

The Orthopedic doctors listed are:

J. Richard Bowen, Surgery, Dupont

Steven Burke, Special Surgery

Norris Carroll, Foot Disorders, Clubfoot, Children's Chicago

Richard S. Davidsonj, Clubfoot, developmental dysplasia of the hip,

leg-length discrepancies, Children's Philadelphia

Denis S. Drummond, Scoliosis, spine and hip disorders, Children's

Philadelphia

Neil Green, Vanderbilt

John Hall, Spine and Hip disease, Children's Boston

Robert Hensinger, Michigan

Tony Herring, Legg-Perthes disease, scoliosis, Texas Scottish Rite

John Herzenberg, Limb lengthening, Maryland

Raymond Morrissy, Scoliosis, Scottish Rite

David Roye, Spinal deformities, Columbia Presbyterian

Paul Sponseller, Spine, Hopkins

George Thompson, Spinal Deformities, UH Cleveland

Veron Tolo, Spine, Children's LA

 

Recommendations from PTN Moms

Best Doctors in America Book

One of the places I have gotten some info on doctors was a book my mom found at her public library Best Doctors in America. They have doctors vote on which ones they would see themselves or send their family members to. Dr. Pena is of course listed.

(LA Children's).

For Anorectal

Dr Alberto Pena, Dr Marc Levitt

Cincinnati Children's Hospital Medical Center

3333 Burnet Avenue

Cincinnati, OH 45229-3039

513-636-3240

Dr. Shaul in CA

Dr. Reyes in CA

The doctors at Boston Children’s Hospital

Dr. Leslie Taylor and Dr. Timothy Weiner at UNC Hospital in Chapel Hill, NC

For Motility Studies

Dr. Hyman

Dr. DiLorenzo

Neurosurgeons for Tethered Cord

Dr. McLone, Chicago, (773) 880-4345

Dr. Rick Abbott in New York

Dr. Pang in Sacramento

Dr. Micheal Scott at Boston Children's Hospital

For Cecostomy

Eric Fonkalsrud at UCLA Medical Center

For HD

Dr. Langer, St. Louis Children’s Hospital, 314) 454-6022.edu

For Hands

Dr. Scott Levin at Duke Hospital in NC

Dr. Lazar at the Hand Center in Baltimore MD

Dr. Klienman at the Indiana Hand Clinic

Dr. Stephen Lacey at Rainbow Babies and Children

Dr. Amit Gupta at Jewish Hospital in Louisville, KY

For General Pediatric Surgeons

From Laura (mom to Kelsey, 2.5, IA)

Our doctor in Boston was Dr. Dennis Lund, he studied at Harvard and under Dr. Hendren. We fell in love with Children’s Hospital, no other place we've ever seen can come close to the treatment Kelsey received there.

From Teresa (mom to Caroline,6, DS, IA)

Dr. Allshouse here in Fresno. He did study under Dr. Pena. He is a wonderful surgeon if anyone needs one in Central California. I have met him and he is terrific. He and his wife have 3 kids, 2 have disabilities (1 cerebral palsy, 1 Down syndrome) so he has "been there, done that" with the rest of us, so he knows how to talk to fellow parents. They also just adopted another baby with Down syndrome that a couple they knew did not want in utero. Surgically, I think he has done several Malone procedures (not sure about cecostomy).

Deciding Whether to do Surgery Locally

From Gretchen (Mom to Franklin, IA and tethered cord)

When I talked to our local neuro yesterday, he was a bit on the defensive and said that he wouldn't do follow-up care on someone else's surgical patient. This could be a hassle, but one I'm willing to live with because I am not comfortable having the local guy do the surgery. It always amazes me that (at least based on our experiences) the best and most well-known doctors (i.e. Pena, Epstein, McLone) are the least territorial about their patients and the most willing to work with parents and other doctors.

Deciding to do Elective Surgeries

From Choosing Surgical Options Article by Scott B. in PTN, Vol.6, #4

First become familiar with the surgeon you would use, the surgery itself, and the predicted outcomes. Attempt to see into the future by thinking about how your options might affect your child’s life. It is important to have a realistic idea about the extent to which their life will be different if you do or don’t do the surgery. Talking to parents whose children have gone through the procedure can be invaluable. Obviously, what is best for your child should carry the bulk of the weight in your decision making process. However, don’t forget to consider how this will affect you directly - hands on medical care requirements, financial impacts, religious considerations, etc. Make sure that you can live with your decision. Consider how this will affect the rest of your family. Consider when to do the procedure. When is the most opportune time?

 

Deciding to do Diagnostic Testing

Key Questions About Your Care - by Penny Simkin

When a Test is Suggested:

What is the reason for it? What problem are we looking for?

What will it tell us? How accurate or reliable are the results?

If the test detects a problem, what will happen next?

If the test does not detect a problem, what will happen next?

When a Treatment or Intervention is Suggested:

What is the problem? Why is it a problem? How serious is it? How urgent is it that we begin treatment?

Describe the treatment: How is it done? How likely is it to detect or solve the problem?

If it does not succeed, what are the next steps?

Are there risks or side effects to the treatment?

Are there any alternatives (including waiting or doing nothing)?

 

Deciding which Doctor to Listen To When Given Conflicting Advice

From Cathy (Mom to Andrew)

If it isn't anything that must be changed or decided today, I would usually leave each of the doctors messages stating that the other doctors were telling me to do different things. Then I would do what research I could do, talk to the doctor I had the most confidence in, and then make a decision. I think it is important for the various doctors to know that you are getting 3 different opinions. Generally, I have found once they know there are other opinions out there they decide to communicate between each other and agree on something. One other thing, it is VERY important that you have one doctor (often the pediatrician) who is willing to coordinate the information and care.

 

Educating Your Pediatrician

From Donna (Mom to Mark)

I have educated our pediatrician in much of what he knows about Imperforate Anus. I read, and continue to read, all I can get my hands on regarding Imperforate Anus. I even attended one of Dr. Pena's study courses. When I would learn something, I would share it with Mark's pediatrician. I print things out from the network all the time and take to him to read. (or fax to him) But one very easy thing that I did was this... When I joined the Pull Thru Network, I also joined in his name. I think I paid for a few years, but it seems like the last time he was sent the subscription for free, because he is in the medical profession. (Bonnie can tell you if I am right, or if I am 'out-of-my-mind!') At any rate, when they begin to receive the WONDERFUL newsletter, they see that this is a very professional organization, filled with educated parents and great doctors. They read it and LEARN! Of course, they have to be open to learning.

Understanding The Value of Your Opinion

From PTN/PTL Moms

One thing several PTL/PTN moms shared with me that I will never forget is that *I* am THE EXPERT on my child. I am with him 24 hours a day, 7 days a week. I go to every doctor’s appt. and know all aspects of his health problems. I am in a unique position to see the whole picture. In addition, I know his personality and behavior better than anyone. If I think something is wrong, it probably is. I have to trust my instincts and be persistent in getting medical personnel to listen to me.

From Kim (Adult, total colon HD)

Doctors are only human, and they are limited by what they have learned in school and in the field. They do not live with you or your problems, and cannot possibly know every solution to every problem every person may have. So what I am saying is that if something works for you and your child, stick with it! If something does not work and you feel your doctor isn't listening, don't put up with it. Stand in the middle of his office and scream at the top of your lungs if you have to. Pester someone in the office who does listen and will stand up for you if you can't. But don't just accept everything a doctor tells you as divine wisdom because it's not! It is simply the best that the doctor can give you from the storage of knowledge that he has acquired over the years. Doctors are not God.

 

From Cathy (Mom to Andrew, 10)

A couple of years ago the doctors tried to tell me that Andrew's pain was in his mind. They wanted to put him on anti-depressants and admit him. I KNEW his pain was real. I could tell it was. I came to a compromise with them - if I allowed them to admit him for a short stay for evaluation then they would do an MRI and other tests I felt should be done. On the FIRST day, they found the source of his problem. The doctor's were amazed - how could he stand that much pain? He couldn't so he got depressed. The moral of this story is FIGHT for what you KNOW is right, don't let anyone convince you of something you KNOW isn't so.

 

Hospital Staff

From Parents: Vital Members of the Team by Louise Wissman, PTN Newsletter Vol.6, #2

Primary Nurse - the nurse responsible for delivering care to your child while he is in the hospital

Charge Nurse - nurse who oversees the management of a unit for a particular shift

Nurse Manager - directs all the functions of the unit

Case Manager - nurse who coordinates your child’s care to ensure that needed therapies are being provided at the appropriate time. She also helps in making necessary arrangements for the care of your child at home.

Child Life Specialist - People with a background in education who help children cope with being in a hospital.

Social Workers - provide support to families to help them adjust to the hospital environment. They also help in finding resources that might be needed during and after hospitalization.

Patient Representative - assists you with “problems” you encounter with the hospital. It can be helpful to ask to see a written statement of the hospital policy pertaining to the problem.

From My Notes

Medical Student - currently in 4 yr. medical school program

Intern - 1st year post medical school

Resident - second through fourth years post medical school

Chief Resident - 5th year post medical school. When completed, the chief resident becomes a general surgeon

Fellowship - 2 years of fellowship are required to be a pediatric surgeon

From Deidre

Nursing is a longstanding profession that stands on its own. It is distinct and separate from the practice of medicine. While it is true that the general public has viewed the nurse as the "hand maiden" of the physician, this is far from true. Nursing has its own scope and standards of practice and a body of nursing theory and research to back up these standards. A nurse practitioner is a nurse who has chosen to practice advanced nursing and has prepared for this practice through a masters degree in nursing at least. (There are still a few NPs who were certified under a previous system of advanced experience and certification exams, but perhaps not a masters degree, but this is no longer the case). The NP utilizes medical knowledge and technology as well as nursing knowledge and technology, therefore offering clients the benefit of both. The NP has different responsibilities and privileges depending on in which state they practice. Many have prescriptive privileges and can function independently with review of a physician on a set schedule.

            The physician's assistant is exactly that, someone who prepares to assist physicians using the physicians' body of knowledge and technology. They function under the direct supervision of a physician and do not offer the benefit of Nursing knowledge and technology. They usually have a bachelor's degree, however they, too, have assistants that were certified under a previous system that did not require that level of education. The PA has different responsibilities and privileges depending on which state they practice in.

            As you may have picked up, I am a nurse and presently in grad school to become an NP. I have worked for 20 years as an RN and worked with both NPs and PAs. I could have chosen to attend PA or NP school, but chose to further my education as well as receive another certification. It is also interesting to note that the AMA is one of the strongest lobbying groups in this country and if PAs and NPs were the same, then it would stand to reason that their support would be the same for both. I can tell you that this isn't so. AMA supports that which they know, can control and that doesn't think outside their box and that is the PA.

            I will get off my soap box now. I am not quite sure where that came from, but think it is fair to say that there are good MDs, PA, and NPs and then there are others . . .

From Rochelle (Adult cloaca and family nurse practitioner)

Very accurate description of NP's vs. PA's. I just want to add.....Most NP's have been in the nursing field before becoming a NP. There is a program now that as long as you have a bachelor's degree in a science related field, you can obtain a NP degree in about 3 years. During that time you do sit for your nursing license since it is required before sitting for your NP exam. There are all types of practices were and NP can function. A PA is someone whose posses a bachelor's degree and then goes to school for about 2 years to train to become a PA. They tend to be more technical vs. the NP whose practice is based on theory. Both the NP and the NP can learn just about anything with work experience. PA's in most states tend to work more in the hospital doing critical care. Where as NP's in most states tend to work more in family or specialty practices.

Anesthesia

            I recommend requesting a pediatric anesthesiologist for your child. Talk to your surgeon and any other medical personnel you know and trust at the hospital to get a recommendation for the anesthesiologist. For Stephen’s closure, I asked a friend of mine who is a pediatric intensive care nurse to recommend a pediatric anesthesiologist and a backup. I then discussed these names with my surgeon. We scheduled the date of the closure such that the recommended anesthesiologist would be assigned to Stephen.

            Many hospitals will let one parent go into the OR with a baby and hold him while the mask is put on his face. We did this for two of Stephen’s four surgeries. My husband and I each did one. It is very important that the parent holding the child be calm as the child will pick up on your fear/anxiety. (Being calm is easier if you have a lot of confidence in the surgeon and the anesthesiologist.) Stephen didn’t cry at all either time. He did squirm when the mask was put on his face but we were warned in advance that would happen and not to let it upset us. He was limp in a matter of seconds. For the other two surgeries, we carried Stephen down to the OR room and chatted with the OR nurses. We then gave Stephen to a nurse and she took him into the OR. Although Stephen was 6 months old (the most recent time), he did not cry at all. Again, I think it is because we were all very calm. I am sure it helped that I took an immediate liking to the OR nurses! Given our positive experiences with Stephen up until he was 8 months old, I am not sure at what age Versed (see below) becomes advantageous.

Versed

From Marti (MS, RN, CS)

Versed is often used as a preoperative medication. It works like valium. It makes the child act silly, and most of all, has an amnesiac effect so they don’t remember the separation from the parents. This eases the separation for the child. The stress of the monumental event for the parent still remains (most parents cry at this time), but at least you know your child is not emotionally traumatized by the separation. We also use versed in the clinic for procedures that are uncomfortable. It can be given orally or nasally. We have been using versed orally for years. There are many citations in the literature which compare the effects of versed given orally, nasally, rectally, IV and IM. My pediatric drug book from 1995 lists it for oral use by mixing the IV preparation with something sweet since it has an unpleasant after taste. In our OR, I think they mix it with Tylenol or something which looks and tastes like it. In our clinic we usually mix it with juice. It is not as well absorbed this way, but much easier to give. Versed causes double vision- I've had kids tell me I have four eyes when I'm changing their tubes under sedation.

From Cynthia (mom to Drew, VATER, 6)

The versed pre-op medication made the separation much easier on Drew. I really think that is the way to go for younger children. As Drew got older (around five), he didn't want the versed. He would be fine when they wheeled him off- but would lose it when it came time to do the mask. He said that it gave him bad dreams. I think that it was the fear as he went under. When we outlined his only two options--mask or shot, he chose the shot. He also chose a shot the next time he needed to be put out, even though he now knew exactly what that meant. I had been told that older children prefer a shot, but I didn't think older meant six. I have always let Drew make all of the medical decisions that can be left up to him. It makes him feel much more in control and often is not the decision I would have made. I would never have chosen to give him a shot.

Interaction of Grapefruit Juice with Versed and Other Medications

From Dan (Adult, IA)

Medicine is prescribed at certain doses with the knowledge of what percent will be absorbed into the blood (etc) from the GI tract. There is a chemical in grapefruit that (in some cases drastically) improves the absorption rate of certain medications. This can be bad because if you get a lot more absorbed than was desired, it could have overdose or toxic effects. Check out this article on the web:

http://pharminfo.com/pubs/msb/gfj_effect.html

From Teresa (mom to Caroline, 6 , Down syndrome, low IA)

Here is my current complete list:

calcium channel blockers (for high blood pressure, chest pain) - amilodipine, felodipine, nifedipine, nimodipine (also for migraines), nisoldipine, nitrendipine, verapamil, diltiazem (no "significant" effect for diltiazem) anti-rejection drug (transplanted organs) - cyclosporine (Sandimmune), tacrolimus (Prograf) cisapride (Propulsid, for GI motility) HIV treatment (immune system) - indinavir (effect "not significant enough" per the manufacturer), saquinavir lipid lowering - atorvastatin (no literature yet), lovastatin, simvastatin psychotropic - buspirone, carbamazepine (Tegretol, Atretol; for seizures), clomipramine, diazepam (Valium etc), midazolam (Versed), triazolam (Halcion, for insomnia) antihistamines - astemizole, terfenadine (Seldane), antifungal - intraconazole (Sporonax), antiarrhythmic - quinidine, caffeine, estrogens (birth control pills, hormone replacement therapy during menopause; significance of effect is unknown)

            The literature is NOT available on eating fresh grapefruit but it would seem prudent to avoid that also, or at the very least do not take them at the same time. Caffeine: Having coffee and grapefruit juice together might simply give you a faster "kick" from the caffeine.

Sedation Prior to NG Tube Placement

From Marti (MS, RN, CS)

We automatically sedate our kids prior to placing an NG tube for bowel prep, basically because too many kids were traumatized by this procedure.

Sedation for MRIs

PTL Experiences

From Karen  (Mom to Stephen, 20 mos, VATER)

The night before Stephen’s MRI we were told to “sleep deprive him”. We kept him up two to three hours past his normal bedtime and got him up at the regular time in the morning. We were told not to give him breakfast. At 20 months and approximately 20lbs., it took approximately 1/2 hr for Stephen to be put out by chloral hyrdrate. When he woke up, he was very irritable. He did not fall asleep in the car on the way home, he did not want lunch, and he was crying inconsolably. We put him in his crib w/in five minutes of arriving home. He screamed/cried for 20 min. in a very unusual manner. When he finally fell asleep, I had to check on him often to be sure he was not sleeping on his back. It was an extremely rough afternoon, much more so than I anticipated. The nurse said that when we repeat his MRI next year we will not use chloral hydrate as it was not strong enough for him.

From Karen B. (Head of PTN, Mom to Sammy, 4, cloaca)

Propofol is given by IV. It is an anesthetic, but no intubation is required. Sammy has had both chloral hydrate and the IM cocktail for previous tests. The propofol has worked the best for her in all respects.

From Jennifer (Mom to Laura)

Laura has had propofol by IV for an MRI. I have only heard of it being given by IV. It is very fast acting and can be reversed quickly. The level of sedation does not require that the patient be put on a ventilator, but an anesthesiologist is present and monitors the patient in the unlikely event ventilation is needed. Chloral hydrate can in rare cases cause apnea so most facilities want a nurse to monitor a patient after it is given. I have heard stories from several parents whose kids were not adequately sedated with

chloral hydrate. they just became combative and never fell asleep. Laura has had VERSED by mouth for sedation for minor procedures. It causes amnesia and calms her, but doesn't put her to sleep so that she could be still in an MRI.

From DM (Nurse, Mom to ?)

The drug Diprovan (trade name) that we give here in Canada IS propofol (generic name) that is given in the US. Diprovanis really thick and white, and looks like they're pushing cream through the IV tubing. It works well (usually). It's funny, lots of the IV stuff we give will knock out large tough men without problems, and it's often little ladies or children who can be so hard to sedate. We also give Versed a fair bit, though it's clear/yellowish. For kids, we also tend to give Fentanyl (also called Sublimaze, and we often give it with a bit of Versed too), though we usually give Fentanyl only when a painful procedure is about to take place, i.e.- setting a broken bone. Ketamine is another drug used for quick short-term sedation, though it can cause bad dreams and that sort of thing during awakening. It's usually reserved for use with yucky ouchie procedures, such as changing of burn dressings, for which it works great apparently. Our facility doesn't use it.

IV Starts
From Marti (MS, RN, CS)

When I used to work on the pediatric floor, we would try once or twice to start an IV, then get the most expert nurse on the floor to try, then get the most expert neonatal ICU nurse to try and then call the anesthesiologist or the surgeon to try. The "neck" catheter is an alternative to an IV, placed in surgery.

From Karen B.

One of the problems we encountered trying to get the IV line in was that the residents insisted on doing it, and in our experience were not very good at it. I would insist that one of the pediatric phlebotomists come and put the line in - they are excellent, because that is what they do all day. That way you can avoid unnecessary pain.

EMLA

From DM (Nurse, Mom to ?)

I was just wondering when reading the posts about the painful attempts to start IV's on kids going to the OR, do your hospitals in the US use a freezing cream called EMLA to anesthetize the skin beforehand? In Canada, we stock it in hospitals, and it's sold over-the-counter without a prescription. I used to have a small tube in my purse at all times for those times when one of the kids would get sick and/or need blood work. The letters stand for Eutectic Mixture of Local Anesthetic. It's a white cream that you apply over vein areas such as the back of the person's hand (for IV sites) and/or the crease of the inner elbow (for blood work pokes) and you cover the cream with a sticky clear occlusive dressing. The cream should be applied in a thick dime-sized gob, and should be spread a bit (not much) and be completely sealed under the clear dressing. It should stay on for 45 minutes to an hour before the procedure, but can be left on longer beforehand without causing any problems (there's no problem if it's left on for a few hours, the skin stays nicely frozen, but if not left on for at least the 45 minutes, it won't have a chance to fully freeze the skin.) The child still cries seeing the needle, and being held, and all that stuff, but they feel a lot less of the pain, and they fear the procedure a lot less the next time. It's expensive ($10-11 Canadian in our area for a tiny tube-- 5 grams I think-) but like I say, I think worth it.

From Marti (MS, RN, CS)

In California, I paid $44 for the larger sized tube, and needed a prescription to get it. I use it for my children's immunizations.

From Nova  (Mom to Skyler)

I have heard the story about Emla making it harder to find the veins. My experience is that the Emla makes the pain go away while a practiced hand hits the vein! Also, while the Emla is great for IV starts, in our case, it seems like too much trouble for a blood draw. An IV stays there and is a constant reminder of the pain it caused while the blood draw is over and done with in less than 5 seconds. When I put the EMLA on for a blood draw, then the hour anticipation was simply not worth the 5 seconds for Skyler. Also, the pull of the clear covering off his hairy little arm hurt more than the blood draw stick!

For us, EMLA is GOOD for IV's, BAD for CBC's.

From: KEH

I used EMLA for Sean a about a month ago. I took him to the phlebotomist the night before the blood draw, and I asked her to draw a circle in blue ink around where I should put the EMLA. It worked perfectly and Sean didn't feel the blood draw. HOWEVER, a couple hours later, he complained that he had trouble breathing. I didn't think anything of it at the time, but later, upon re-reading the instructions that come with the EMLA cream, I read that that can be a side effect. I then got opinions from four different doctors and nurses, ranging from "don't ever let him use any medication with "cain" in it or he could have a life-threatening anaphylactic reaction" to "don't worry about it, he can use it again". We have an appointment next week with an allergy doctor to see if she wants to test him to see if he is allergic to "cain" medications.

Unsedatable/Hyper Reactions to Sedatives

From Mary  (Mom to Patrick, 2.5yrs, HIA)

We went in for the SEP test on Tuesday. When they finally sedated Patrick, he turned out to be "unsedatable". He had 2 doses of Chloral Hydrate and 4 doses of Versed before he finally fell asleep. It took an hour to get all the leads on his head, arms and legs. They started the test. He opened his eyes and stood straight up in his crib. At that point, they canceled the whole thing and we have to go back again.

From Marti (MS, RN, CS)

Some children have an "opposite" reaction to Nembutal and to Benadryl, which makes them "hyper". I wonder if the same is true for chloral hydrate. We have our pediatric anesthesiologist handle these cases and we either use propophol or general anesthesia.

Preparing for Surgeries

Questions for the Surgeon at the Pre-Surgery Clinic Visit

What will happen the night before and day of surgery?

Will he need to drink something to empty his bowels?

Should he not eat the day/night before or day of surgery? Does not eating make bowel emptying easier?

Will the surgery be first thing in the morning?

When will we meet the anesthesiologist? Will he get a pediatric anesthesiologist?

What type of anesthesia will he receive? How will it be administered?

Will I be able to go w/ him to the OR?

If not, how will we know when he has left the staging area and entered the OR?

How long should the operation last?

How will we know he is out of OR?

When and where will we get to see him and how will we know it is time?

Will he be hooked up to lots of monitors - blood pressure, heart beat, etc.?

Will there be any life support devices or just monitors?

When will we see you to find out how things went?

Will he be in intensive care? For how long? What determines when he moves to a regular room?

What type of pain relievers will he get after the surgery?

Can you please - in the initial post surgery order - allow for increased dosages, decreased time intervals, or trying a different drug if the pain killer doesn't seem to working?

How long will he be in the hospital? What factors determine he is ready to go home?

Will he require special care after returning home?

Tips for Surgeries

1) When you check into the hospital, ask if they have a patient information booklet. This will have all kinds of useful info including cafeteria and snack bar hours, what to do if you have a complaint, etc. If you have to pay for parking, ask about purchasing parking passes. Usually, these save you a lot of money. Find out if a phone is provided, if there is a charge for local service only, if there is a charge for tv, etc.

2) Try very hard to remember his nurses' names. If you have a nurse who is particularly good, ask her what you need to do to get her again. Usually, this requires talking to the nurse who makes patient assignments. She will be thankful for the compliment and often times the hospital staff will accommodate your request. If you get an exceptional nurse, it is worth the effort to get her back next time she is on duty.

3) If the monitors start beeping, do not panic. Nine times out of 10 this is just something silly like the IV fluid bag is empty and needs to be refilled which often takes a nurse a 1/2hr. or more to get to - that is, it is not very serious. However, do page or go to the nurses station to tell them. This is one reason why it is nice to know if any of the "machines" are for life support or they are all monitoring.

4) If the IV comes out, it will need to be redone. Don't let too much time (as in several hours) go by. If he dehydrates, it will be much harder to find a good vein to reinsert it.

5) Most hospitals have a kitchen for visiting family. There is often a fridge or microwave you can use. Ask if there is such a place. At the very least, you should have access to ice and water.

Margarit (Mom to Abi, 3yrs old w/LIA)

There are many diseases & infections that one can contract when given blood. There are other ways to build up hemoglobin. My 3 yr old daughter, Abi got EPO (erythropoiten) shots which built up the red blood cells tremendously. Abi had a total of 5 or 6 operations, all IA related & came thru w/flying colors because she was built up w/EPO before her operations w/no need for blood transfusions. If you would like some solid medical guidance re: this issue you may call Englewood Hospital, in Englewood,NJ (201)894-3000 xt 3195(Noreen Scott) or Sherri Ozowa @xt3653.

Keeping Families and Friends Updated

From Karen  (Mom to Stephen, VATER, 3.75yrs.)

I copied the information below from the web page www.visitingOurs.com.

            What is visitingOurs.com? VisitingOurs.com is the solution to the dilemma faced by anyone with a sick or hospitalized family member: how to keep all of your concerned loved ones updated about the patient's condition and progress with ease, efficiency, and care? The service is completely FREE and easy to use. In three simple steps a patient or a family member or friend (we call the Guardian Angel) sets up a secure personal patient page where they post information and updates about the patient. A patient page can be visited from anywhere around the world. You decide who you want to know about your page. They will be automatically notified that you created your page, given the Visitor's PIN and then alerted every time you post an update. In addition to viewing the information you have posted, the visitor can leave a confidential text message for the patient, as well as send a get-well gift. Whether it is to announce the joyous arrival of a new born, update a loved ones condition and progress, or simply share anecdotes in order to fuel the recovery process, visitingOurs.com allows people to feel connected and remain informed at anytime, from anywhere.

From Anna (mom to Rissy and Alo)

I tried this site (www.visitingours.com) and it was great! One caution though, when you set up the patient's page for the first time, it's best not to put the email list in yet. When you have finished all your updates and finalized all the data you want to put in, then that's the time you should build the email list. This is better because what I did at first was set up the email list (all friends and relatives) so when I was doing the updates, editing and deleting every now and then, updating, adding, and finalizing the page, I was not aware that for each and every update I do, the site sends alerts to my email list. So one of my friends started to respond, saying she has been receiving about 10 emails from visitingours in the past 30 minutes! So set up the patient's page first THEN set up your email list when you've finalized everything.

Insurance Tips

Contact the Insurance Company Ahead of Time

In our experience, contacting the insurance company ahead of time made payments go much more smoothly. Sometimes a pre approval was required by the hospital but not the insurance. Assurance that the charges for the surgeon and hospital were “usual and prevailing” eliminated surprises after the fact.

Do Diagnostic Testing As an Inpatient Procedure

Our insurance company pays a greater percentage for inpatient than outpatient care. For my son’s pullthrough, we did the distal colostogram a day before he checked into the hospital. Thus, we ended up paying out-patient rates for the colostogram. When the same procedure was suggested for Stephen’s closure, I requested that the distal colostogram be done the day of the admission and explained the insurance implications to the surgeon. She was willing to accommodate me so I was able to save money.

Keep a Phone Log

I recommend keeping a notebook or computer file to document every phonecall you have with insurance personnel or hospital/doctor billing administrators. Write down the date and time of the call, whom you spoke with, and what was said. Always be sure to ask when this item will be completed and how you will know it has been done. I found out the hard way that many times what was agreed to is not what gets done. When that happens, you can use the documented information to get assistance from a supervisor which usually leads to much quicker resolution.

Speak with the Same Person

It helps if you can speak with the same person every time you call billing or insurance. In this manner, you will have one person overseeing all of your items. You develop a relationship with this person and can really work together. Plus, you are only playing phone tag with one person. Some companies do not allow this or make it easy to do. In that case, I recommend always requesting to speak with the same supervisor when problems arise. Then, at least you can develop a relationship with him and he will be aware of all of your major problems.

Be Partners with Your Insurance Company

From Michele

From the start, we became "partners" with our insurance company...sending them information as we got it, asking for and getting a "personal" claims adjuster to handle us and all the referrals...someone who followed our progress and understood (as best as the layman can) what we needed and were going through. Even though we are in California, our HMO authorized 3 trips to NY for surgeries and procedures with Dr. Pena...even waiving our hospital copay. The moral here is...any insurance can bite, but you have to work just as hard to educate them and try and consider them as partners, not adversaries in our children's care. I expect my insurance company to question out of the ordinary care, but when I do my research and present them with reasonable backup for my request, I expect them to approve it.

Perhaps your pediatrician could meet with the PPO medical director, or even yourselves do that, armed with the history and information on your child's condition. Our pediatrician did that when we made the request to see Dr. Pena, and it made all the difference in the world. A face-to-face meeting, with documentation and your child's pictures (always good!) could help change the ruling.

One "trick" that I used early on as well, and I think it goes A LONG way... is that I wrote a letter of thanks to the person handling our account, AND a letter to the CEO of the HMO...and along with that was a picture of Victoria.

Getting Insurance to Pay for Pena When He is Out of Network

From Kathy (mom to Aaron 5, HIA)

I got our HMO to pay for us to go to Dr. Pena based on two items.

1. I wrote a letter explaining that I had talked to families whose children had the surgery done wrong, and that then when the children were older they ended up going to Dr. Pena because they had no control and had to have their surgery redone. I said that I did not want to go through extra surgeries if it could be avoided by going to him directly.

2. We got a second opinion here in Chicago. This second surgeon then wrote a letter on our behalf recommending Dr. Pena to our insurance company.

Get articles from all sources you can to provide credible information for them. Also, Dr. Pena's office and the hospital agreed to accept 80% of the charges. Our HMO got letters from Schneider's before we went. I got a copy from them. This proved to be very important because as things turned out we went there approved for, and thinking we would be having the pull-thru done, and it ended up Aaron had to have a colostomy revision first because Dr. Pena did not have any colon to bring to the outside of the body. The point is that since we had to have an additional surgery, I of course had a huge insurance battle and had to write many letters with copies of the letter our HMO received from Schneider's stating they would accept the 80%. Hospitals can forget they made those agreements until you prove it to them.

From Nova

With my insurance company, I had battle after battle to get them to cover Pena. The clincher for me was that my local surgeon's protocol required 10 days post-op while Pena required only 5 days. I took these numbers to the insurance company along with dollar signs and this was the ONLY thing that made them budge on letting us use an out of network doctor as in-network. All the bleeding heart and doctor reinforced letters I wrote prior to getting the $$$$$$ figures were wasted time and effort. The bottom line is what mattered.

If Insurance Won’t Pay the Mason’s Might

From Bonnie  (Mom to Amy)

Have you ever heard of Mason's? That is a secret society whose members are men and I understand that their rituals are biblical in origin (esp. Old Testament). A man has to be asked to join and spends weeks studying with a member who acts as a tutor to prepare him for initiation. They meet in a building called a "lodge" and do charitable work in their community. Their wives and/or daughters can be asked to join the Order of the Eastern Star - a similar group but just for women. After becoming a Mason a man can elect to continue his study and also become a member of either the Scottish Rite or York Rite - also only male members and also rather secret. The Scottish Rite has a hospital for children in Atlanta (there may be more - I just have heard of this one). After that the man can become a member of the Shrine. Their members are called Nobles and best I can tell there is Middle Eastern influences to their rituals. The Shrine has chapters all over the US - the one in Birmingham is called Zamora. Their total fund raising efforts are directed to supporting their hospitals in the US. They have several that specialize in treating children that have been burned or children that are crippled. No child or their family ever pays a dime to be treated at one of their hospitals. If you have insurance they will bill the insurance company but never bill the family for anything over what the insurance company will pay. They provide transportation and, if needed, lodging for one parent to accompany the child. We looked into taking Amy to their hospital in Greenville, SC to see if they could help with her incontinence (before we found Dr. Pena). Since they have several spinal cord rehab centers I hoped that they were doing something with biofeedback but they were not. They also hold regular "open houses" at their Temples and families can bring their children and get help with the paperwork to see about going to one of their hospitals. They only take children they think they can help - you have to apply and have their records sent for review. Since they specialize in burn treatment and orthopedics they usually only take those types of cases. If I had needed it, though, they probably could have done Amy's tethered cord surgery.

Experience with COBRA

From Dee

When Steven was born, we were on COBRA and they dropped us on a technicality after his delivery when it became clear that multiple surgeries were involved. My husband scrutinized the policy and found some wording that basically stated that if a person was declared disable he/she could not be denied coverage. It went on to say that anyone that required assistance to perform any function that was life sustaining, (i.e. eating, drinking) was disabled. Well, he argued that Steven was disabled because he needed assistance evacuating and without it he would not survive. The "oversight committee" agreed and declared him disabled. Now, you may not agree with our tactics but we were facing the abyss at that point. Many friends have pointed out that it may come back to haunt us in the future but as far as I am concerned, that worry can get in line with all the rest.

Changing Jobs

From Julie

In 1996 Clinton signed the Health Insurance Portability and Accountability Act (HIPAA). Some provisions became effective on January 1,1997 and other provisions become effective on the first health plan renewal date after June 30, 1997. The law is intended to reduce barriers for individuals when obtaining new health insurance coverage, whether through a new employer or an individual plan. If you want to learn more about it, here's the website I used: http://www.auxillium.com/hipaa.htm or just do a search on Health Insurance Portability there are many sites that discuss this.

Medical Tax Deductions

From ?

Also from a tax standpoint, I expect that this year we may very well hit that 7-1/2% of gross income on medical costs. Inclusive to that tally is diapers/pull-ups or any other "regular expenditure" that is not typically necessary for a "healthy child". (disclaimer) You may want to check with your tax accountant for your particular state. But together with a note from the pediatrician written on a prescription form, I save all my receipts for Pull-ups (starting at age 3), Lact-aid, Fleets, Metamucil, etc., etc., and use these against that 7-1/2% figure. You may also include $.10 per mile for any trip involving medical needs or appointments in this tally.

From Alison

I do know that there is grant money available from Easter Seals for children with incontinence problems. All you have to do is apply for it. We only found out about it through Sick Kids in Toronto when our daughter, age 6, had her cecostomy tube placed last summer. Every little bit helps! We live just outside Toronto. If you want the address of Easter Seals or a phone number I'm sure I have them on file somewhere.

Travel and Accommodations

Airplane Travel

From Bonnie (Mom to Patrick, VACTERL)

Date: Tue, 2 Sep 1997

American Airmiles

American Airlines has a program called Airmiles for kids. The woman in charge is Debbie Ryan and she is one of the sweetest ladies you will meet in this rat race! Her number is (817) 963-8118. Basically these are the things that AA will ask you to get:

1) A letter from a 501c3 approved agency (Your church, therapist, social worker...)

In that letter you need;

            The child’s name

            Date of birth

            Diagnosis

            reason for the trip

            Cities flying from and to

            Dates of travel

            parents name

            Mailing address

            Daytime phone #

            Statement that the burden of paying for the tickets is too much for you to handle.

            (They don't ask for any kind of income statements or anything.)

2) You will need a referral from the Dr. you are going to see and a statement saying your child is ok to fly. (Someone else mentioned in another post that it took 4-6 weeks)

Continental Care Force:

Call Bob Jack at (218) 261-6626 He is real nice too. They don't ask for all the letters and stuff, just confirmation from Dr. Pena (or whoever you’re going to). They will only pay for one parent to go with the child though. AA paid for both of us to go.

 

Each one of these programs will only help once, and they need at least three weeks to make all the arrangements.

 

OTHER PROGRAMS:

Aircare Alliance (800) 2961217 (from another post (800) 822-7972)

Wings of Freedom (407) 857-0727

Angelplane (702) 261-0494 (Patty VanDyke)

I don't know anything about the above programs...you would have to call them to find out who they help and how. I think one of them is just for cancer patients.

 

From Mici (mom to Kelsey, 2, cloacal exstrophy)

Date: Tue, 30 Dec 1997

Call the USAir number you would call if making regular reservations. Tell them you have a child who has to go to a hospital for medical reasons, they have discounts on the airfare for the child and one person to travel with them. If the person you talk to does not know what you are talking about, ask for a supervisor or for them to check with a supervisor.

Requirements:

1. Name of hospital.

2. Name and phone number of doctor

3. Diagnosis of child

4. Can only call 3 days ahead of time

5. Tell them it is a medical emergency even if it is elective and with our kids it usually is.

6. Call your doctor’s office and tell them what you have done so if the airline calls the doctor’s office knows what to tell them.

We have also been able to get open ended returns since we never know how long Kelsey will be in the hospital and avoid having to pay for changes in plans which can cost $50 for each ticket.

Date: 12/7/98

Kelsey and I recently flew from San Diego to Boston and back courtesy of TWA airlines. Here is the information I got and the contact person:

            Name: Operation Liftoff

            Telephone: 1-314-895-5563

            Fax: 1-314-895-5550

            Contact Person: Nancy Talton

I found Nancy Talton easy to deal with and easy to reach. You will need a letter from the doctor, we did everything by fax. TWA does need 2 weeks to get it all together but do not leave you hanging. They will pay for a total of 3 trips and also grant wishes for children facing life threatening illnesses. They were able to change our return flight when she needed to have some renovation work done in the or which kept us in Boston longer than we thought when we left home.

From Liz (mom to Noah)

I have been researching this and quite a few airlines offer programs, including Delta, American, United and Norwest. They say they need 3 to 4 weeks but faxing letters can be done and the ticket can be received in 2 days.

For general information on United Way of America's involvement in the SkyWish program or to apply for flight tickets, contact your local United Way or United Way of America at 1 (800) UWA-2757, ext.285.

Air Lifeline (funded in part by Ronald McDonald House charities) is an organization of experienced pilots that provided free round-trip air transport for needy adults and children who require care and are able to travel. call 1-800-446-1231.

Angel Flight...1-800-352-4256. You need to notify them about a week in advance and you have to have a medical release faxed from the child's MD stating they are stable enough to fly without medical personnel on board.

From Tina

Date: Mon, 07 Dec 1998

I am having problems getting help with flights. These are my results:

-United Way of America - only helps if it is life threatening

-Air Lifeline - say we must have a financial need and can absolutely cannot afford the airline tickets.

-Delta Airlines- only bereavement instances

Website w/ Free Airfare for Medical Needs

http://freebies.about.com/shopping/freebies/cs/medicaltransport/

Help for Military Families

From Michele (mother to cassie 1 year Vacterls)

This is something I wanted all military families to be aware of. If you have to travel at all for any of your children's surgeries you are allowed TDY pay. we did not find this out to until my daughter's 3rd surgery. The army hospital is not capable of handling my daughter, so we go to a civilian hospital. It is the same if they send you to another military hospital away from where you live. The first part of the paper work is done thru your chain of command.

From Elaine

The military paid for my daughter and my flight, hotel, rental car, and gave us a stipend for food.

Priceline Web Site

http://priceline.com. You will give a bid price that you want to pay. Within an hour you will hear whether it is accepted or not. You choose the dates & how many layovers (I had said 1). The thing you have to be willing to take whatever time they give you...

 

Train Travel

When we went to Pena for the pullthrough we traveled by train and got our own compartment. This worked out GREAT! We had our own sink, toilet, and electrical outlet which made diaper changes, bag emptying, and bottle warming a breeze. Our 6 mo. old twins could play on the bed (there were two an upper and lower cot) or sit in their car seats and look out the window. All of us could nap. We had plenty of room for our 2 car seats and luggage. We paid an extra $122 each way for the “viewliner” compartment and $128 each for two train tickets. The total was certainly less than the price of 4 plane tickets (I’m one of those moms who believe babies should be in a car seat on airplanes.)

 

Ronald McDonald Houses

Some hospitals have Ronald McDonald houses nearby. These homes offer low cost accommodations for families of children requiring hospitalization. I believe you need a referral from a doctor to be admitted.

The Ronald McDonald House at LIJ

We paid $15/night (this is a flat rate not sliding scale) for the one next door to Long Island Jewish Hospital (Dr. Pena). We had a private room (with two double beds and two dressers) and a full bath. We had access to a kitchen and were given a large shelf in a refrigerator and cabinet space. The kitchen has everything you would need to cook plus a pantry stocked with cereal, canned goods, etc. We were able to use one of their cribs. I understand they also have car seats and strollers that can be borrowed. We were asked to wash our own linens and clean our room/bathroom before leaving. Cleaning materials were provided. There are several laundry rooms and detergent was provided. The house was beautiful and clean. There is a small TV room upstairs, as well as a small library/puzzle room. Downstairs there is a huge living room with a large screen TV, VCR, etc. They have videos available for you to watch. There is also a huge playroom with tons of toys, dollhouses, video games, computers, etc. Outside there is a great playground. Local restaurants donated bread, bagels, coldcuts, salads, etc. Local charities came in several nights a week and made dinner for the families. It was a wonderful place to stay! Of course, we got to meet families of other Pena patients and got lots of good advice and support.

Grace, mom to Autumn

Having just returned (Nov. ‘99) from a three week stay at the Ronald McDonald House I thought I would let you know what it is like. The cost to stay there is $15/night. You must be referred from the social worker at the hospital. If they do put you on the list for a room there is a chance you may not get one. You have to phone the day before to see if there is a space- usually there is but not always. If there isn't a space they will find a place for you at the Floral Park Inn which is about 4 miles away at the special rate of $50/night. The Ronald McDonald House is located right beside the Schneider's Children's Hospital. The area around the house is a typical New York suburb. I felt safe walking at any time. You will be within walking distance of a 24 hour grocery store, many pharmacies and quite a few restaurants. The rooms are quite large and clean. You will have your own bathroom and two double beds, as well as a dresser and a desk. They have car-seats, cribs, strollers, and baby baths for your use. On the main floor there is a kitchen with dining tables, highchairs and dishwashers, stoves and fridges. They supply plates, pots and pans and all of the kitchen supplies you will need. Each room is assigned one shelf in the cupboard and one shelf in the fridge. There is also a pantry stocked with canned goods and other various items. They also have a children's play area, both indoor and outdoor, a TV lounge, and a library. They have a computer for sending and receiving e-mail- but it was under repair when we were there. The also have volunteer drivers who will take you anywhere you may need to go. Most nights some group- usually a high school group or a church group- come by and make dinner for everyone. They also seemed to always have many deserts on hand- either donuts , cakes, cookies. We went into Manhattan a few times by bus and subway- it took about an hour. If you want to take the subway the best bet is to buy a day pass at the variety store for $4. It allows you to get on and off subways and buses all day. They did have a bus go in one day to New York to see the circus. Probably the best part about staying there is that you get to meet many other Pena patients. We met two other girls with a cloaca and it was wonderful to share experiences. People come from all over the world to see him- from Italy, Kuwait, Panama, Mexico, Canada!!- you name it. If you want to give something back to the house you can have a brick inscribed for $100 or you could make a donation of something from their wish list- such a t-towels or pots and pans.

From: Wayne & Kimberly

First of all .. Call Karen at the Ronald Mac Donald house. The phone # at the house is (718) 343-5683. You need to call now to ensure that they have room.. Karen will send one of the volunteers to pick you up at the airport in a van.. The van will also make a trip to the local supermarket if you would like to cook your own meals. Restaurants, if you walk down the street (about 2 blocks) there is an EXCELLENT little tavern...called Union Street Tavern....real good for steak or fish.. good prices...right next to it is an Italian restaurant (owned by the same family) I forget the name...but they have excellent pizza, pasta dishes, lasagna... all for takeout too, they will cook to your specifications. For breakfast lunch and dinner, there is a great diner.

Flora Hotel

From Jane (mom of Tyler 6 yrs. HIA,cecostomy)

We had to stay at the Flora hotel when we saw Pena a few yrs. back for bowel management. It's nice, but VERY small. There were 2 adults and 2 children and we had no place to go. We had to pile our luggage in the corner since there was no place to put it. The kids still joke about it when we go to any other hotel. Doing the enemas in the tiny bathroom was an adventure in itself. Ty was only 4 yrs. and his legs were out the door. :) You definitely need a car, it is not within walking distance. You will get privileges at the RMH even if you stay there, but they say that surgery patients get priority so hopefully you will get a room. My one suggestion it you stay at the hotel, is get the dates you can stay in writing by the hotel when you check in. We had a terrible time. Karen made the arrangements and we were to be there Sun. nite and leaving Sat. morning. We got a surprise call Wed. afternoon at the RMH from the maid, wanting us to get our things OUT because they said we couldn't have the room any longer. Fortunately, we had had enough of NY, and convinced them to let us stay the nite and we would be out the next day. Whatever way it goes, Karen (is she still running the Ronald McDonald house?) should help you get things arranged and settled.

The Ronald McDonald House at LIJ

From Kathy (mom to Aaron, almost 8, HIA

With all of the talk about Dr. McLone and people needing to stay in Chicago, I thought I should give you all the information you need. The Ronald McDonald House is the closest to the hospital. It's at 622 W Deming Pl. (773) 348-5322. You can walk to the hospital from there. Not quite as close as the Ronald McDonald house by Dr. Pena, but two small blocks. Not having to move your car and being able to keep parking it is worth it. The neighborhood is very safe, so you do not have to worry about that. If you can not stay there then the Days Inn on Diversey Avenue is the closest hotel. (773)525-7010. I live about 10 blocks away from the hospital. I would love to meet anyone for lunch there, or help you out.

Happy Endings

From Gretchen (Mom to Franklin, HIA)

Franklin is doing great and to see him now, no one would ever guess that he had such a difficult early life. I think that all of us here feel that we have "happy endings" and that our kids are "success stories;" it is just the definition of "success" that differs.

From Pat (Mom to Kevin)

Our son is healthy as a horse and loves life, and life seems to love him... at least, his friends and family do!! I remember my first thoughts when the doc told us about Kevin's condition: "Thank God it's that end and not the other!" That thought still sustains me at times.

From Cathy  (Mom to Andrew)

My son is now 10 years old. He has had his difficult times but is a happy outgoing generally healthy little boy!!! I remember how very hard it is when you find out all these things are wrong. Take heart, we will be here to support you and help you in any way we can.

Betsy (Mom to Matt, age 12, HIA, cecostomy, bladder augmentation, etc. . .)

My son Matt is now 12 years old. He remembers NONE of the surgeries, hospitalizations, tests, or other nasty stuff that he went through as an infant. I can remember so many of the things in great detail. Especially the really tough stuff. Matt has gone through a lot since infancy, and he remembers the more recent stuff. But, like so many of these kids, he went through the worst of it as an infant, up till about age 2. It does make me feel better to know that he has no of being in the hospital or anything. Take heart, as tough as it is, you are going through much more emotional turmoil over this than your child. And it does get much better as they get older!

From Bonnie  (Mom to Amy)

My youngest daughter, Amy, was born with VATER Syndrome and a tethered spinal cord. VATER - V - hemivertebra, A - imperforate anus - E - esophageal atresia (no esophagus) and R - radial abnormalities (R can be used for renal or radial). She is the survivor of over 20 surgeries to correct these problems (and for things like tubes in her ears). Her first 2 surgeries were done the night she was born - the last one in May of this year. She is now 8 years old and a busy, bright and wonderful child. She does well in school (even though she is fecally incontinent), takes piano lessons (has a recital on Saturday) and a gymnastics class. It would be a big, fat lie to tell you that the journey from then to now has always been easy - it has not. But Amy has always done well - children handle surgery so well - they don't know that they are supposed to be pitiful - they just want to get up and play. You and your wife are about to discover things about yourself that will surprise you. You will acquire a level of medical knowledge you would not have imagined. You will learn how to be Sydney’s best advocate in dealing with doctors and nurses, etc. And you are at such an advantage over Amy's father and I when we started out 8 years ago - you have access to the support and the sharing of knowledge and experiences that this network can offer. You know that you are not alone. You can have real input into your daughter's care. The happy ending you are looking for is right in front of you. It is yours.

From Laura (Mom to Kelsey, 2.5yrs, spina bifida, low IA)

Although it is a very devastating thing to have a child born handicapped or impaired in some way, I'm sure that all the parents on this list will tell you the same thing, that these kids are the absolute joy of our lives. You will find that your child is so precious in spite of it all. It will be scary and difficult, and sometimes you'll wonder if you have strength to continue, and then she’ll look at you and smile and blink her little eyes, and everything else will fade to the background. These kids are so strong, they endure so much and they are so normal and happy like all the other little kids out there. It gets easier, and I think most of us, even those of us still facing surgeries, etc. would say we are living a happy ending. I have my little girl, and in my eyes, she is perfect, and we definitely have a happy ending!

From Michele (Mom to Victoria, 5, cloaca, HIA)

My daughter was born almost 6 years ago with cloaca (which includes imperforate anus) and today is just as spoiled, active, capable and lovely as any child! It can be a trying time, but just take it one day at a time, be strong and be an active participant in her care, remember to ALWAYS ask questions and for clarifications until YOU are certain you know what the doctors are talking about. Your daughter has a colostomy, which will be a great source of frustration. You'll get lots of advice on how to make it stay on a little baby, so just ask or check the very very extensive archives. Some practical advice: If the hospital doesn't provide one (ours did), get a notebook, and fill it with notebook paper, get a holder for pens, a couple of those pages that hold business cards and pictures and take that with you EVERYWHERE. Get business cards for each of the doctors she sees. Use the notebook to write down questions and the answers you get. Ask the doctors to draw diagrams if you don't understand something. This first child will have a most comprehensive baby book! :) We ended up transferring everything to a notebook that zipps up and had pockets and a carrying strap. Our older girls drew pictures and we included them. It's one heck of a memory lane to walk down, and Victoria loves to look at the pictures and ask questions. As surgeries are done, be certain to ask -now- for the surgical reports. You don't need the whole long shebang, just a summary. They can make copies for you as its done, and it is much easier than going back later and asking for them. Make a medical resume to put in the notebook as well. This should include name, birthdate, birth weight, gestation, dates of surgeries, where the surgery was done, doctor and what surgery. Right now you may not have much to put on there, and depending on the severity of your daughter's condition, it might not be long, or it could end up being pages. Just keep it on the computer and update it. (this is a good suggestion even for kids who have no special circumstances) Keep track of immunizations and medications taken. What you see here are suggestions for staying INFORMED. That will be the pillar of strength to you. By the end of a year, you'll feel like you should enter nursing school! :) Above all, know that there is nothing WRONG with your daughter. At worst, depending on the depth of complication, she will be 'differently abled'. She will walk, talk, run, play soccer, pick on her subsequent siblings, frustrate mom, wrap daddy around her finger, her first word will be 'No!' and she will be a joy to spoil. Just like everyone plans for her. :) She might just have to go to the bathroom differently. Come back to this forum and share with us. We've all been through this and more, and you can sort through all the advice. This is a wonderful (if sometimes overwhelming) source of information. Let us know where you are, because this list has participants from all over the world. We can find you doctors, support groups, schools, etc. Most of us are moms, but there are dads here, too. Don't be offended if we refer to 'mom' in most posts, just subsitute 'dad' or 'grandparents' because they too are just as capable of feeling confused and upset, and they can also help out.

 

Dealing with Grief

The one thing that has helped me most in dealing with sadness over Stephen’s struggles is accepting that life is unfair and then measuring fairness by how healthy Stephen is rather than what health he is lacking. For example, I tell myself that it is unfair that he can see and other children will never view the beauty of a sunrise, he can hear and other children never will, he can run while others are paralyzed, he can learn and retain. It’s not fair that he is well fed while other children are starving. By concentrating on what blessings he does have, I am able to be grateful and thankful. Realizing that we are not entitled to perfect health and that life itself is a gift beyond our control helps too.

From DM (Mom of Ian, 8.5, high IA)

You're going to do well, and things are going to get a lot sunnier. What you're feeling is very natural. You're grieving: sadness, anger, and usually a lot of loneliness with a lot of scared feelings. It's hard when a mom feels like this, because a lot of times the dad copes his own way, by trying to keep life optimistic and as normal as possible. Usually two partners in anything cope differently. Anger is fine at first, but realize that it's anger for what you and your baby and the family have to go through, and it's impossible to punish those invisible fates that made your baby’s and your family's life different from what you thought it was going to be. It's sometimes easy (and subtle) to let the anger bubble over to one's partner/husband, just because different coping makes it look like the other person just doesn't "care as much". Anger and sadness are normal, healthy reactions to this situation. But they also should be time-limited. Look at your feelings, your tears, and your worries. Accept them as something anyone would do, and something you need to work through. But then, tell your heart you're going to move past them, and plan for it. I hate to say this, but turn off your computer for awhile and divert yourself with other activities. Try and fill the next week or two with the most happy and pleasurable activities you can. Rent a movie. Go dancing. Refuse to let your mind entertain thoughts about the IA for the next few weeks. Give your mind a true break.

WELCOME TO HOLLAND

By Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm

supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new

language. And you will meet a whole new group of people you would never have

met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Handling News of Another Problem

If your child is diagnosed with a “new” problem, remember that the diagnosis itself did not change the fact that your child has had this medical condition all along. Having the diagnosis is simply a tool that will help you take the best care of your child possible. That is not to say that you won’t experience grief, anger, frustration, fear, etc., but at least you can channel some of your emotions into learning how to handle this new situation. Realize too, that by finding out about it now, you may have prevented the situation from worsening.

Latex Allergy

 

It is important to limit IA kids exposure to latex - esp. mucosal linings such as in the nose, eyes, mouth, genitalia, anus - because an allergic reaction usually builds up over time due to frequent exposure to latex. IA kids are more susceptible due to repeated exams w/ latex gloves, frequent surgeries, cathing, and enemas w/ latex supplies. Ask your doctors to use latex free gloves. (Note: powder free latex gloves will reduce the risk of adhesions.) Use non-latex bottle nipples (some are silicone or vinyl). The disposable nipples obtained at hospitals are usually rubber. Be careful also with pacifiers and teething toys. Diapers that are latex free include Huggies and Drypers. Ask your pediatrician or surgeon about your child’s specific situation.

 

Note: The medical community has now made it standard practice for all children with spina bifida to avoid natural latex rubber. Many children born with IA also have spina bifida occulta. Stephen has occult spinal dysraphism and none of his many drs. including neurosurgeons told me he also had spina bifida. I had to ask… Other risk factors that apply to IA children are surgery during the first year of life and children who have had multiple surgeries. There were some studies done showing that normal children who had a parent with spina bifida were more likely to develop latex allergy possibly because of exposure but also possibly genetic. There have also been spina bifida children born in the last 5 years who have been on full latex precautions since birth and still have developed latex allergy - another indication that there could be a genetic predisposition to developing the allergy.

 

The information I could find on latex allergy is somewhat contradictory. For example, which foods are coss reactive, how effective diagnostic tests are, etc. vary depending upon the source. Since I am new at latex allergy, I didn't know which sources are the most trustworthy. So, this section has some repetition of information with the source listed.

From Liz (Mom to Noah)
Some phone numbers

Spina Bifida Association of America 1-800-621-3142

FDA MedWatch product problem reporting number 1-800-332-1088

FDA Latex Allergy Hotline 1-301-594-3060

Canadian Latex Allergy Association 1-905-885-9708

American Academy of Allergy, Asthma and Immunology 800-822-2762

American College of Allergy, Asthma and Immunology 847-427-1200

Centers for Disease Control, CDC 202-512-1800

National Institute for Occupational Safety and Health, NIOSH 800-35-NIOSH

Occupational Safety and Health Association, OSHA 202-693-2300

 

Information and Support Groups

Latex Allergy Information Service (CT) 1-203-482-6869

E.L.A.S.T.I.C. 1-610-436-4801

Latex Allergy News 860-482-6869

A.L.E.R.T. 888-972-5378

G.L.A.S.S. (MO) 1-313-351-9788

 

Symptoms of latex allergy can range from mild to severe, and can include one or more of the following:

-hives or welts

-swelling of affected area

-runny or stuffy nose

-sneezing

- coughing

-headache

-reddened, itchy or watery eyes

-sore throat, hoarse voice

-abdominal cramps

-chest tightness, wheezing, or shortness of breath (asthma)

swelling of the trachea, life threatening changes in blood pressure and circulation (anaphylactic shock)

 

It is recommended that you contact the manufacturers of items directly to confirm if natural rubber has/has not been used to make products. BabyLax (fleet) Theravac, Bowel Management Tube (MIC), cone irrigation set (Convatec), silicone retention cuff tip (Lafayette) are listed as EXAMPLES OF LATEX-SAFE ALTERNATIVES/BARRIERS. Ready-to-Use Enemas contain LATEX (Fleet-Latex Valve).

 

People with LATEX allergies should wear the medical alert symbol and carry an epi-pen (auto-injectable epinephrine) to be used in the case of life threatening anaphylaxis. If an ambulance is ever required, the emergency team should be alerted to the LATEX condition so that they can bring appropriate equipment and supplies.

 

We have a kit for Noah with latex allergy information, listing supplies that can and cannot be used on him, an epi-pen, sterile gloves, a sterile glass syringe, a Mallinkrodt ng tube, and bandages and latex-free tape. He also wears a medical alert bracelet. The number at the medical alert has all his medical information, insurance plan number, doctor's name, a brief medical history, etc.

 

Web Sites

http://www.latexallergyresources.org/ Allergy to Latex Resource & Education Team (ALERT, for support and education)

http://www.latex-allergy.org Education for Allergy/Support Team & Information Coalition (E.L.A.S.T.I.C., for support and education)

http://www.latexallergyhelp.com (Latex Allergy Help, for support and education) This site has a list of latex products and alternatives in the home environment and the medical environment as well as lots of other information

http://latexallergylinks.tripod.com/ (latex allergy links, directory and links) This site has a great what’s new section and lots of other information

http://www.anesth.com/lair/lair.html Latex Allergy Information Resource (L.A.I.R. for perioperative issues)

http://www.sbaa.org The Spina Bifida Association of America hosts a Latex Awareness Site that contains a list of products containing latex categorized by the home/community and healthcare environments as well as other information

http://www.aaaai.org American Academy of Allergy, Asthma, & Immunology (information for professionals)

http://allergy.mcg.edu/physicians/ltxhome.html American College of Allergy, Asthma, & Immunology (for professionals)

www.familyvillage.wisc.edu/lib_latx.htm (lots of information)

www.cdc.gov/niosh/homepage.html (National Institute for Occupational Safety and Health (NIOSH, 800-356-4674, for occupational health)

http://www.immune.com/rubber (this site has lots of good information printed by the govt., a database of medical products w/ latex, etc, etc.)

www.medicalert.org Medic-Alert (allergy bracelet, 800-432-5378)

www.fda.gove/medwatch/ MedWatch (FDA, 800-332-1088, medical products reporting program)

http://latexallergylinks.tripod.com/cross.html  Latex Allergy Links - Cross-Reactivity of latex w/ foods

 

From Immnune.Com

Latex is often described as the sap of the Hevea tree. This is not an accurate description. The sap runs deeper inside the tree, beneath the cambium. Latex runs in the latex ducts which are in a layer immediately outside the cambium. There is a Non-Latex Allergy Chemical Reactions Chart that shows other items besides latex might be causing an allergic reaction similar to latex. There are test kits for these other allergies available. The most interesting were the carba mix and the mercapto mix.

From Latex Allergy Links

Many cleaning products degrade latex and can release latex molecules onto surfaces or into the air, where they can be inhaled. This can cause a problem for staff who are allergic to latex.

From DHHS (NIOSH) Publication 98-113

Hypoallergenic gloves do not reduce the risk of latex allergy but may reduce the risk of reactions to chemical additives in the latex. When wearing latex gloves, do not use oil-based hand creams or lotions which can cause glove deterioration. After removing latex gloves, wash hands with a mild soap and dry throroughly. Frequently clean areas contaminated w/ latex-containing dust.

The symptoms of latex allergy include: skin rash, hives, flushing, itching, nasal, eye, or sinus symptoms, asthma, and shock. In sensitized persons, symptoms usually begin within minutes of exposure; but they can occur hours later and can be quite varied. Mild reactions to latex involve skin redness, rash, hives, or itching. More severe reactions may involve respiratory symptoms such as runny nose, sneezing, itchy eyes, scratchy throat, and asthma (difficulty breathing, coughing spells, and wheezing). Rarely, shock may occur; however, a life-threatening reaction is seldom the first sign of latex allergy. Certain medications may reduce the allergy symptoms; but complete latex avoidance, though quite difficult, is the most effective approach.

From How Common is Latex Allergy? A Survey of Children with Myelodysplasia, Developmental Medicine and Child Neurology, 1994, 36, pg. 64-69

Children with latex allergy tended to be four or more years of age and were more likely than those without to have a history of allergies and to have had more surgical procedures for which general anesthesia had been administered particularly more than 5 procedures. Children with and without latex allergy were equally likely to have a CNS shunt and had similar history and duration of CIC, frequency of glove use during CIC, history of bladder stimulation, history of constipation and, if constipated, manual evacuation. Among children of four or more years of age, those with latex allergy were no longer more likely than those without latex allergy to have been on a program of CIC for 18 or more months. We did not find that chronic daily procedures, such as CIC and manual stool evactuation, were significantly associated with the development of latex allergy.

From OSHA Memorandum 4/12/99

Natural rubber latex contains many proteins. A number of these proteins, such as hevamine, hevein, and rubber elongation factor (REF), may initiate allergic reaction to NRL. Studies have indicated that corn starch powder, added to the gloves, can serve as a carrier for the allergenic proteins from the NRL. Antioxidants, biocides, soaps, and other chemicals used in the processing of NRL products may contribute to sensitization as well. The two major routes of exposure include dermal exposure and inhalational exposure. NRL protein absorption has been reported to be enhanced when perspiration collects under latex clothing articles. Reactions can vary from localized redness and rash to nasal, sinus, and eye symptoms, to asthmatic manifestations including cough, wheeze, shortness of breath, and chest tightnless; and rarely, systemic reactions with swelling of the face, lips, and airways to shortness of breath that may progress rapidly to shock and potentially, death within minutes. Some affected individuals continue to exerience asthmatic symptoms even without contact with NRL. It is not possible to predict who will progress from local contact urticata to the more dangerous allergic reactions nor when this may occur. Effective Sept. 30, 1998 the FDA requires labeling statements for medical devices which contain natural rubber and prohibits the use of the word “hypoallergenic” to describe such products. Laboratory and clinical evidence indicates that an association exists between allergy to natural rubber proteins and allergy to certain foods and plants (e.g. avocado, banana, kiwi, and chestnut) and some aeroallergens (e.g. pollens, grasses).

From DHHS (NIOSH) publication No. 97-135

Bicycle handgrips

Atopic individuals (persons with a tendency to have multiple allergic conditions) are at increased risk for developing latex allergy. Latex allergy is associated with allergies to certain foods especially avocado, potato, banana, tomato, chestnuts, kiwi, and papaya.

A diagnosis is made by using the results of a medical history, physical exam, and tests.

Blood tests approved by the FDA are available to detect latex antibodies. Other diagnostic tests include scratching or pricking the skin through a drop of liquid containing latex proteins. A positive reaction is shown by itching, swelling, or redness at the test site. However, no FDA-approved materials are yet available to use in skin testing for latex allergy. Tests should be performed only at medical centers with staff who are experienced and equipped to handle severe reactions. Testing is also available to diagnose allergic contact dermatitis. In this FDA approved test, a special patch containing latex additives is applied to the skin and checked over several days. A positive reaction is shown by itching, redness, swelling, or blistering where the patch covered the skin. Tests can give both false positive and false negative results. One study of exposed hospital workers found that 54% of those sensitized had latex asthma.

From Allergy and Asthma Associates of Northern California

Other risk factors are less defined but appear to include a history of allergic rhinitis (hay-fever) or any other allergy

From the Spina Bifida Spotlight 2000

Serious reactions can occur when latex enters the bloodstream, injected through the latex ports on intravenous tubing. The powder from balloons or gloves can absorb latex proteins and become airborne, causing reactions when breathed or touched by a latex-sensitive person.

Food that has been handled by latex gloves may also be contaminated by this glove powder. People who have allergic reactions to latex may also be allergic to certain foods including bananas, tomatoes, potatoes, avocados, and kiwi fruit.

The FDA now requires labeling of natural latex rubber in all medical devices. Consumer products are not yet covered by a labeling mandate.

People with spina bifida are at significant risk of becoming allergic to natural latex rubber (a milky fluid from the Hevea Brasiliensis tree). All individuals with spina bifida should be considered at high risk for having an allergic reaction to rubber and should avoid contact with latex products in all settings from birth.

Latex allergy and latex avoidance should be discussed with all health care and community providers including school, day care, and camp.

Consultation with healthcare providers familiar with the latex allergy is recommended before hospitalization or surgery.

Latex sensitive children can not be in rooms decorated w/ latex balloons.

From Testing for Latex Allergy(www.anesth.com/lair/latex/testing.html)

Testing requires referral to an allergist. Radioallergosorbent (RAST) testing is an in vitro test for IgE antibody directed towards latex. It is quite specific for latex allergy, but its variable sensitivity (65-85%) and cost, make it less useful as a screening test. The skin prick test (SPT) involves dropping latex antigen in solution onto skin and pricking the skin gently with a needle through the solution. The latex proteins that are responsible for allergy are still being investigated and a standardized, FDA-approved, latex extract with which to perform the test is not yet available. Testing is available through John Hopkins (800) 344-3224 and Diagnostic Products Corporation (800) 678-6699.

From Latex Allergy Help (latexallergyhelp.com)

Allergies to latex and multiple fruits or vegetables have been recently documented to produce patterns of allergenic cross reactivity. While details of the clinical relationship between latex and food allergies await further study, food allergies have been found to coexitst with latex sensitivities for some people. There may be cross-reactivity between latex allergies and the following foods and inhalants:

High – banana, avocado, chestnuts

Moderate – apple, carrot, celery, tomato, kiwi, papaya, potato, melon

Low or Undetermined – pear, peach, cherry, pineapple, strawberry, hazlenut, rye, wheat, grass, ragweed, mugwart, soybean, fig, grape, walnut, apricot, passion fruit, peanut

Note: Allergists do not agree on how to skin test for foods. The serums are very unstable and may not give a postiive reaction to someone who is very allergic to a particular

food. A lot of allergists use the actual foods to do the skin tests.

From www.anesth.com/latexallergyQA.html (dept. of anesthesiology, Case Western, University Hospitals of Cleveland)

Hevein, prohevein (proteins) and rubber elongation factor (an enzyme) have been implicated as strongly allergenic components of natural latex. However, many other antigenic components of natural latex have been identified, making latex antigenicity extremely heterogeneous. Because of this heterogeneity, the diagnosis of IgE-mediated sensitivity to latex is often difficult to confirm, because there is currently no single test that considers all of the already known or suspected antigen factors. Rates in children with spina bifida are alarmingly high, ranging from 34% to 67%. The following foods may cross react with latex IgE.

Common – avocado, banana, chestnut

Not Uncommon – potato, kiwi, tomato, cantaloupe

Reported – peach, mango, pineapple, apple, papaya, pear, melon, cherry, wheat, turnip, spinach, celery

From Allergy On-line (allergy-online.com)

Latex is produced from natural rubber. The natural rubber is obtained from the sap of the rubber tree (scientific name havea brasiliensis) and contains, in addition to latex, traces of plant proteins from the rubber tree. The processing of the sap into a finished rubber product involves multiple steps where various chemicals are added to improve the strength and elasticity of the rubber. Basically high risk groups are those which have a high exposure rate to latex, especially if the exposure involves contact with the lining (mucosa) of internal organs.

Your allergist can perform a blood test called an "IgE RAST for latex". However, this test is only about 70% accurate, and is only predictive for systemic reactions or development of hives due to latex. At the present time, there are no FDA approved skin tests for determing systemic latex sensitivity.

Man-made, synthetic rubber has the same structure as natural rubber, but without the contaminating rubber tree proteins. Synthetic latex does not appear to cause latex allergy. Unfortunately, these synthetic latex products are very difficult and expensive to make.

From Australian Allergy and Immunology Information for Consumers and Health Professionals (http://www.capitalimmunology.com.au/Pages/latex.html)

Proteins in latex are present in some foods as well. Latex-allergic people sometimes find that some foods cause an itchy mouth or throat swelling. The most common foods described are banana and avocado and sometimes kiwi fruit, passion fruit, plums, strawberry, tomato or other fruits. These foods do not have to be avoided routinely ­ just if they cause problems.

From ACAAI (http://allergy.mcg.edu/physicians/ltxpos.html_)

In the United States, attention to latex allergy was prompted by reports of several fatalities due to anaphylaxis induced by latex retention balloons used in barium enema procedures(9-11) and by frequent intra-operative anaphylaxis among children with spina bifida, a fact later attributed to the high prevalence of latex allergy among these children which was most probably induced by early and repeated exposures.(12-15)

From Asthma and Allergy Foundation of America

When anaphylaxis happens, it affects the whole body. Blood vessesls widen so much that blood pressure plummets. Symptoms include flushed skin, rash, swelling of tissues such as lips or joints, stuffy nose, sweating, paleness, panting, nausea, abdominal cramps, rapid pulse, faintness, confusion, wheezing, convulsions, and passing out. Other symptoms include itching of the mouth and throat, hoarseness, cramping of the uterus, and feeling the need to urinate. People with allergies or asthma are more likely to have an allergic reaction to shots. Intense exercise, particularly in hot weather, can bring on anaphylaxis. Sometimes this only occurs with exercise after eating celery, shellfish, wheat, peaches, or other specific foods to which the person is allergic.

From Latex Allergy: A Patient and Health Care System Emergency, Journal of Emergency Nursing, Dec. 1988,pt. 543.

Anaphylactic reactions are biphasic with symptoms recurring within 6 to 10 hours in up to 20% of patients.

From a Q&A About the EpiPen Jr.

Symptoms of anaphylactic shock can include hives, swelling (esp. of the lips and face), difficulty breathing, vomiting, diarrhea, cramping, and a fall in blood pressure. The effects of epinephrine usually last 10-20 minutes. Therefore, it is important to seek further medical assistance. If you can not go to an emergency room, call 911.

From Dr. Kothari at Princeton (http://www.pacpub.com/new/health/a-b/hm050799.html

If you suspect you have a latex allergy — or experience a cross-reaction with certain foods — an allergist should be consulted. An allergist can determine the extent of your allergy, and help you learn to control it. An allergist can diagnose immediate hypersensitivity to latex by blood tests, called RAST testing, or by skin prick testing. Delayed hypersensitivity can be diagnosed by patch testing. Food allergies can be diagnosed by RAST/prick tests.

From Elastic

Signs and symptoms of latex allergy include but are not limited to:

Itchy, watery eyes

Generalized itching/hives

Skin flushing

Shortness of breath / coughing

Faintness / Dizziness

Nausea / Vomiting

Conjunctivitis

Nasal congestion / sneezing

Tachycardia / hypotension

Difficulty breathing / asthma

Feeling of impending doom / low blood pressure

Abdominal cramping / diarrhea

Chronic sinusitis / bronchitis

Headache

Swelling

Testing
From Latex Allergy Dodges Tests, Physician's Weekly, May 1, 2000, Vol. XVII, No. 17

The widely used ImmunoCap and AlaSTAT (DPC) have about 25% false-negative rates. The often-used RAST test for antilatex antibodies is 60% sensitive in some studies.

Update in Allergy and Immunology

Anthony Montanaro, MD; and Stephen A. Tilles, MD

Pages 291-297 Ann Intern Med. 2001;134:291-297.

Although latex allergy has become an increasingly important allergic disorder in U.S.          society, it presents a difficult diagnostic problem in both primary and specialty care. One          of the major difficulties in diagnosing latex allergy has been the lack of a standardized          skin testing reagent. Study Supports the Efficacy of Nonammoniated Latex Skin Test          Reagent for Confirmatory Puncture Skin Tests Hamilton RG, Adkinson NF Jr. Diagnosis of natural rubber latex allergy: multicenter latex skin testing efficacy study. Multicenter Latex Skin Testing Study Task Force. J Allergy Clin Immunol. 1998;102:482-90. [PMID: 0009768592] | PubMed |  In testing for latex allergy, allergists have relied on extracts of unknown potency or have performed skin tests by directly puncturing uncharacterized powdered latex gloves. Reliable in vitro testing is available for latex-specific IgE, but the diagnostic sensitivity and specificity of these assays are generally regarded as being lower than those of puncture skin tests. To document the safety and diagnostic sensitivity of a nonammoniated latex extract, Hamilton and colleagues studied 358 adults. The study participants were divided into three groups on the basis of their clinical history: those who reported no history of allergy to latex (n = 180), those who reported an unequivocal allergy to latex (n = 124), or those in whom latex hypersensitivity had been restricted to contact dermatitis (n = 54). The participants underwent serologic testing for the presence of latex-specific IgE and skin testing. The latter was performed by using a nonammonium latex allergen preparation at an initial concentration of 100 g/mL; this was increased to 1 mg/mL if results were negative at the lower concentration. Appropriate positive and negative controls were undertaken with glycerin-saline and histamine. The Pharmacia CAP system was used for serologic testing. The rate of positive prick skin tests (diagnostic sensitivity) in the latex allergy group was 95% at 100 g/mL and increased to 99% at 1 mg/mL. The rate of negative prick skin tests (diagnostic specificity) in the group without latex allergy was 100% at 100 g/mL and decreased to 96% at 1 mg/mL. Skin testing was not associated with significant episodes of systemic anaphylaxis. Of the participants in the latex allergy group, 16% reported mild systemic reactions of pruritus, rash, rhinitis, ocular itch, or urticaria immediately after skin testing. One person in this group had a peak flow rate that transiently decreased by 28%.           These data demonstrate the diagnostic specificity and sensitivity of the soon-to-be-available nonammoniated latex skin test reagent. Mild local or systemic          reactions may occur in many patients undergoing skin testing; no cases of severe          systemic anaphylaxis were reported in this study, although severe anaphylaxis remains          a possibility. For internists and other primary care physicians, as well as allergy specialists, latex allergy is an increasing clinical problem. A suggestive clinical history of latex allergy is necessary but not sufficient for a definitive diagnosis of IgE-dependent latex allergy. Patients with suspected latex allergy should have serologic testing or skin testing. The skin testing should be done by someone who is expert in the administration of this test and interpretation of the results and who has the necessary emergency equipment available for treatment of any local or systemic reactions. It is important to recognize that there are rare cases of patients who present with a highly suggestive clinical history, have negative results on serologic and skin testing for latex, and require controlled provocation testing to establish a reliable diagnosis.

Many more people have evidence of latex allergy by skin test or blood test than have symptoms on exposure.

Some Common Products that Contain Latex

See http://www.sbaa.org for a more complete list and for latex free alternatives

Note: Direct physical contact with latex-containing products is not necessary to trigger the allergic reaction. Cases of anaphylaxis shock have resulted from inhaling proteins.

Medical Setting

Many medical items come into direct contact with mucous membranes which enhances the absorption of latex proteins that can trigger an allergic reaction.

Bandaids, blood pressure cuff, thermometer probes, stethoscope tubing, reflex hammers, medication vial stoppers, syringes, tapes, OR/infection control masks, hats, & shoe covers, catheters, g tubes, electrode bubls, pads, & grounding, endotracheal tubes & airways, ear plugs, rubber pillows or sheets, surgical implants, many things in a dentist’s office, etc.

Note: The June 2001 issue of Journal of Allergy and Clinical Immunology (Vol. 107, No. 6) has an article by scientists at Johns Hopkins. The conclusion was that drugs stored in vials with rubber stoppers may be contaminated with latex allergens - even if the stopper is not punctured. These researchers are urging the FDA to require labeling of the stoppers as containing latex. Out of 12 latex sensitive individuals, 2 had skin reactions to solutions from vials with unpunctured rubber stoppers and 5 had reactions to solutions from vials with punctured rubber stoperrs.

Note: A nurse at Duke who is very knowledgeable about latex told me the following: My latest information is that the stoppers being used on the immunization bottles are beutyl rubber which is not natural latex rubber.

Home Community Setting

Adhesives, bandaids, pencils, balloons, Koosh balls, tennis balls, basketballs, bowling balls, bicycle handles, bike helmets, gym floor, chewing gum, appliqué on tee shirts, elastic on socks, underwear (leg and waist bands), sneakers, and sandals, rain coats, boots, zippered plastic storage bags (Ziploc ok), food handled with latex gloves, cleaning gloves, ear plugs (MRIs!), ear phones, camera eye piece, binoculars eye piece, mouse pad for computer, kitchen utensils, zippered storage bags (Ziploc and Glad bags are ok), envelope glue, chewing gum, electric cords, drain stoppers, handles on raquets (ping pong, tennis, bats, golf clubs, etc.), tools, etc. (cover with cloth or tape), window insulation, newsprint (toluene in it seems to be the problem), ads, coupons, lottery scratch tickets, rubber bands (plasti bands), bungee cords, garden hoses, tires, silk flower stems, pacifiers, bottle nipples, teething rings, infant toothbrushes, rubber ducky, shower curtains, water toys, old Barbie dolls, beach thongs, water masks, bathing suits (Suits Me Swimwear), goggles, scuba gear. At school, art supplies, science lab equipment, PE supplies (rubber mats, balls, etc.) often contain latex.

 

Note:1 It is the protein component of natural latex that is regarded as the likely cause of allergic reactions. Butyl- or petroleum-based synthetic rubbers do not cause latex allergy. Most latex paint is generally synthetic and should not concern consumers.

Note 2: Many restaurants, including fast food, and food providers such as bakeries, delies, supermarkets, etc. use latex gloves to prepare and serve food. Becareful with prepackaged meats, salads, etc.

Note 3: A nurse very knowledgeable about latex allergy told me that bungee cords and pony tail holders would be ok as long as they weren't put in the mouth. She also told me that latex on shirts is heavy, rubbery to the touch, and stretches w/ the material.

Note: The labeling on the ontent of socks, underwear, etc. does not include the trim unless it specifically says trim and then lists the trim content. So, these garments can say 100% cotton but still have natural rubber latex elastic in the trim.

Sources of Latex Free Products

Note: You have to check with each manufacturer to find out if the clothing is safe.

Elastic and trim are exempted from being identified. If a garment

(including socks) days 100% cotton or 100% Lycra, that only means the body of

the garment. This check needs to be done for underwear and socks too.

Alternative Resource Catalog 800-618-3129. To get a catalog, send a $3 check to Alternative Resource Catalog, 453 Gloria Lane, Oswego, Illinois, 60543-8487. Send a separate piece of paper with name, address, telephone number, and email address. Latex-free first-aid supplies can be bought individually or in a kit. Catalog contains a latex free "elastic", plastibands, buster brown socks, and underwear among other things.

CETRA products for latex free living 888-LATEX-NO, www.latexfree.com

Kid Abillity - www.kidability.com, (312) 945-9000

Suits Me Swimwear/ Latex Free Swim wear – 100% polyester, $15 plus $5 shipping. www.latexfreeswimwear.com 352-666-1485

Decent Exposures: Latex Safe Underwear for women and girls only (800) 524-4949, email requests@decentexpsoures.com

Hy-tape (pink medical tape) is now available latex free. 800-248-0101 or www.hytape.com. Some users have found that the tape is not sticky enough.

Rubbermaid - all home products are latex free except cleaning gloves and they state "contain latex" on the package

Sanford – the following products are latex free. All Sanford markers, all Sanford woodcase pencils including their erasers, all Sanford pens including pens with grips, all Sanford prismacolor products.  See website for a more complete list. www.sanfordcorp.com/latexfree.html

Crayola - Info from website www.crayola.com/scripts/rightnow = "As of 1’01, none of our currently manufactured products contain latex. Prior to 1998, the rubber stamps included in Color & Stamp Dinosaur, Color & Stamp Monsters, Message Mania, and Playtime Office Kits did. Also, latex was contained in the rubber erasers in the Crayola Drawing Portfolio, the 1993 Back-to-School Kit, and the Art Organizer. All of these products are now discontinued."

Trend - "The adhesive used on our stickers is removable acrylic. It contains no dry natural rubber or natural rubber latex.

Rose Art - none of their products have latex (reply to email at roseart.com)

Elmers - everything is latex free except rubber cement, comments@elmers.com, msds sheets are available for all products at www.elmers.com

Hallmark - Hallmark stickers are not manufactured with natural rubber latex or contain dry natural rubber. All rubber polymers used are synthetic rubbers.

3M - scotch brand magic and transparent tapes are latex free. Post-it notes are latex free. Masking tapes do contain Nateral Rubber in the adhesive, which would contain latex. There are a few exceptions, but you should probably refrain from this product line. There is one masking tape called Long Mask which is Blue in color which has a Acrylic adhesive which does not contain latex. The Box Sealing tapes we offer typically use Synthetic or Acrylic adhesive systems which will be latex free. Gary Pierson Packaging Systems 800-722-5463

Discovery Toys - Playful Patterns does not contain latex. One of our older products, "Short Stacks Wooden Train," does contain latex. There are three of our new spring products (2001) that we are still waiting to hear fron the manufacturer on whether they contain latex. They are "Inside Out," "Double Bubble Plane" & "Cloud Cruiser."

Fisher Price (1-800-432-5437) - none of their toys have latex. Their only products with latex are bottle nipples and pacifiers which are clearly labeled on the pkg. w/ "contains natural rubber latex".

Mattel toys (Mattel bought Fisher Price) may have latex but it would be labeled on the box.

Tonka Trucks - All Tonka Trucks manufactured by Hasbro after 1991 contain no

latex.

Safety 1st - (800) 962-7233 ext, 237, foam boats and yellow rubber duck are ok

Hedstrom - Duraglow multipurpose 10", 15", 18", (play ground balls), Duraglow beach pro (volleyball), Duraglow and Boss 32 panel soccer ball, Hedstrom basketball, sold at Kmart, Ace Hardware, and TruServe Also, fun hop 18" 4yrs. and up, $10. Won't send a catalog. Sell to retail stores (419) 289 - 9310 QA mgr. Kenneth Frisby

Gopher Sports - will send a catalog w/ lots of balls including playground balls. Rubber balls are clearly marked (800) 533-0446

Spalding (800) 772-5346 basketballs and soccer balls

BSN MacGregor (800) 527- 7510 basketballs, soccer balls

The only Rubbermaid Home Products items made from natural rubber latex are rubber gloves from our cleaning products line. The packaging on these gloves mentions the presence of rubber.

The Vermont Country Store - (802) 362-2400 socks but they seem to be men's sizes. www.vermontcountrystore.com

Kitchen utensils - silicon scrapers from pampered chef "classic scraper, a skinny scraper and a mix n scraper"

The JC Penny Special Needs Catalog didn't have much of interest except incontinence products. I don't know if these products contained latex or not. JCPenny.com, 800-222-6161

The Toys R Us for Differently Abled catalog did not tell whether or not toys contained latex. I contacted the store and they couldn't help either. They told me to contact each toy manufacturer directly. www.toysrus.com, 888-869-7932

Lauri (foam puzzles, educational toys, etc.) - all products are latex free even those described as "crepe rubber"

LYCRA is a fiber manufactured by DuPont. It does not contain any natural latex or rubber protein. Please be aware that although this is a registered trade mark, many people use the term lycra to refer to other products which may or may not contain latex. Also, although the lycra itself does not contain latex, other items found in the product you are looking at might. Be careful.

According to the Exceptional Parent Magazine Website (www.eparent.com/toys/latex.htm

GI Joes and Cabbage Patch dolls are all latex free

Mattel Barbies made after '93 are latex free but older Barbies may have latex (800) 524-8697

Little Tikes, a division of Rubbermaid, does not use latex in their toys

Nerf - I have heard from reliable sources that these are latex free but I have been unable to confirm. (source Joanne Mackey)

3M mouse pads are latex free

Avery labels and stickers are latex free

Hefty One Zip slider bags, Glad-Lock zipper food storage bags, and Ziploc brand bags are latex free.

Note: beutyl rubber is natural latex free, PVC polyvinylchloride is plastic, EVA is latex free, galvanized rubber (used to make shredded tires) is not a problem, crepe rubber is usually not a problem

Elvax(R) is the DuPont registered trademark for a broad line of ethylene-vinyl acetate copolymer resins for use in adhesives, sealants, and coatings. Elvax® EVA ethylene vinyl acetate copolymer and terpolymer resins are available from DuPont in a wide range of grades used in adhesives, footwear, wire & cable and other applications. Blended with petroleum waxes and resin tackifiers, Elvax® EVA resins are the basis for many hot melt adhesives. These specialty copolymers include grades that are extrudable, foamable, injection moldable, blow moldable and suitable for compounding with other olefinic resins and rubbers. The resins are inherently flexible, resilient, tough, and resistant to ozone and environmental stress cracking. The vast majority of material that are just initials- EVA, EDPM etc. are all synthetic rubber/latex/foam products - no natural rubber. EVA is a (synthetic) foam rubber similar to what used to be in upholstry cushions in the natural

Synthetic rubber is made with chemical accellerators, e.g., carbamates, thiurams or MBTs. Many people with NRLA also react to those accellerators so they must be careful of the synthetic rubbers and are more likely to have success using one of the copolymers, e.g., polyvinyl, polyester, polyurethane etc. You can be patch tested for the accellerators to identify which one(s) you react to. Then, when you call a manufacturer, you can also ask about the particular accellerator that was used. It is even wise to do so when dealing with the copolymers.form.

Tips from PTL Members

I am on a latex list and several folks have had the following experience with foods. Shortly after a latex reaction, they are allergic to certain foods. But then, when they haven't had any reactions in a while, they can eat those foods safely again. Of course, this eating is in moderation of both quantity and frequency. But there is hope that some foods that a person has reacted to can be added back to a person's diet after awhile. One theory for this is that after a reaction, the immune system is weak. Also, cooking the food seemed to make it safer as opposed to eating it raw.

More Problems when Sweating, PE at School, Foods, and Balloons at School

From Bonnie

When Amy is at school she has a pair of leather golf gloves to cover her hands so that she can participate in as many of the games in PE as possible. At one time we provided her class with vinyl balls (soccer and basketball) but at the larger school where she is now that was not practical. Our experience is that at PE Amy was more likely to have a reaction than in a classroom setting. It seems that if she is hot and sweaty (pores open) she was more likely to have a problem. When she was younger she had a pair of white cotton gloves (easier to find during the Easter season) that she kept in her desk. They are more practical for classroom activities, but are useless for PE. I know that I would be uncomfortable with Amy being in a room full of latex balloons - but she is actively allergic. It's a tough call in Karly's situation. She's old enough to physically avoid them - and I would ask that the teacher remind the class that Karly is allergic and to not be putting them in her face or teasing her with them. Is the classroom large enough so that she won't be having to navigate a sea of balloons to get around? If they are filling them with helium can you ask that they make the strings long enough so that when they are tied to the chairs they are well above the children's heads? Are they going to be popping them? If they pop them then the powder on the inside of the balloon (used to keep them from sticking together on the inside and helps make them easier to blow up) will be released along with the latex proteins. Breathing that would be worse for her than handling them. Just to be on the safe side you may not want to have her eat any of the cross reactive foods today - bananas, avocados, melons, chestnuts, kiwi and papaya. Sometimes the actual latex exposure is not enough, but when combined with one of the foods she could have a reaction. If you do consider gloves for Karly do be cautious about elastic. We had to search several sporting goods stores to find gloves that do not have elastic inserts and are available in a youth size in both left and right. Golf gloves are the only type we could find.

Bandaids

From Kathy  (Mom to Andrew)

I had a hard time finding latex free bandaids.however, Walmart does carry them. They are made by CRACKLE CREATIONS...they say in BIG Letters on the package..Latex free..they come in a couple of different styles and decorations. One is called SAFARI another is called PARTY..and another has alot of smiley face bandaids in it.

From Connie (mom to Billy, 8mo., TC, CRS/VACTERLS, LIA)

I just got off the phone with a representative at J&J who confirmed that the Band-Aid brand "Advanced Healing" bandaids (both sizes) are latex free and so is the packaging. They cost a little more than regular band-aids, but are available at all stores - so that is a plus.

Toys

From Bonnie

You can call Fisher Price at 1-800-432-5437. One thing I learned doing the research for the latex allergy article I'm doing is that you should ask does it contain "natural rubber latex" or "natural rubber". There are synthetics which do not cause the allergic reaction. It is recommended that when checking with a manufacturer that we ask them to start labeling their products so that we will know the NRL content.

Clothes

As long as the elastic is contained in fabric, it is fine. Disney makes underwear that only has elastic at the waist - not the legs. Pants and socks also need to have elastic contained w/in fabric. Buster Brown socks do this.

.Major problems are tree chestnuts, avocados, kiwi, bananas

 

Kidney Reflux

From Larry (Dad to Ethan)

There is no evidence that the long term use of antibiotic required increases drug resistance or decreases immune function. The doses are very low. Also, there is an extremely low rate of kids where grades I&II and even some III do not eventually resolve. In all, it is (of the problems we are all faced with our children) a very "bottom of the list" thing to be concerned about. I have read extensively and talked about it with a urologist friend, it rarely precipitates into anything. However, having said this, for those who do develop complications, it can lead to difficult situations. The worse end result can be complete renal failure and sepsis. But these are rare.

You need to be vigilant about temps that may indicate infection. Any parent with a child that has VUR should make certain that whenever they run enough of a temp to warrant a doctor's visit or a visit to the ER, they should remind the medical staff that the child has VUR.

From Ellen (mom to Stephi hia tcs& ag)

My daughter Stephi had a grade 4 reflux that was treated with antibiotics daily; voiding cystograms and kidney ultrasounds every year. My third daughter had a grade 1 reflux, diagnosed at 6 weeks after a urinary tract infection. I saw the urologist and they stated to just wait and see.  She is 20 mo now and so far no problem. I have not taken her for a voiding cystogram because she has been infection free since her one and only. The did say that in the presences of and infection it can make it "look" like there is a grade 1 when it is just inflamed tissue from the infection.

From Phyllis

Our son Joseph, 6 yrs old, was born with a single kidney and a grade V reflux. His urologist performed several procedures called "teflon paste" where this was injected through his penis to strengthen the ureter. He now has decreased to a grade 1 reflux and the urologist is satisfied and so are we because that means no transplant surgery. We still probably have to go every six months for a while for a VCUG which monitors the reflux and a ultrasound to monitor the growth of his single kidney. But so far so good.

From Roxanne (Mom to Remi 3yrs)

Grade 1 is very mild. As far as I know they do nothing but watch. - not even a prophylactic.

Remi also had reflux. Hers was a grade level 3/4. My understanding is the lower levels (3 and below) will very often correct themselves without intervention. That when it is a 5 or above they recommend surgery. With Remi being the middle grade, she started on prophylactic antibiotics. She has a solitary kidney. At 3 yrs old she take 1 tsp. grape septra a day. Her last VCUG showed it correcting itself. On the 29th she goes in for some exploratory urological surgery & we will see if it is totally corrected & she can go off of antibiotics. If a child goes on long term antibiotics, he needs a follow up CBC every 6 mths.

From Amy (Mom to 3 year old twins James & Katie(VATER: HIA, solitary kidney,
Augmented bladder etc...)

My Katie only has one kidney and the one she has isn't the greatest so any reflux is cause for concern with her. Luckily we've corrected it (3 ureter reimplants later).

Anyone whose child has renal reflux needs to be sure your child's blood pressure is checked. While Katie had a uti that put us in the hospital, the infected urine got into the kidney. Thank goodness the kidney didn't get infected but its reaction was to raise Katie's blood pressure. After one of those horrendous run ins with residents and even the surgeon on call (they wanted to wait and see but it was too high for that and had been high for 36 hours at that point), she was put on bp medicine that she will apparantly (according to the nephrologist) need to be on for life because the kidney often doesn't realize it doesn't need to react anymore once it's been stressed. Kidneys are definitely something not to be compromised if it's at all avoidable!

From Jane (mom of Tyler 6 1/2 yrs. HIA,cecostomy)

Tyler also had reflux. He was on antibiotics for a while too but when he got an infection at 6 months, the dr. didn't waste anytime and gave him a vesicostomy. This relieved the pressure on the bladder and the kidneys, giving them some time to rest.  He had his ureters reimplanted - they are removed, crisscrossed and then reattached. This is to help stop the urine from refluxing back into the kidneys. After he had that done at around 20 months, and had his vesicostomy reversed, his kidneys started to improve with each visit. We were thrilled when he got a great report last June. His dr. couldn't believe the drastic changes in them, they were looking beautiful and functioning wonderfully.   We thought we were free and clear of drs. for 18 months but that wasn't to be true. He was doing wonderful till last week when he started passing a blood in his urine. It was ALOT and only lasted for about 6 hrs. and then cleared up, but it was enough to scare us to death. All the tests from the ER came back ok, except for red blood cells which was HIGH. We had an ultrasound and xray today and they found he is not emptying his bladder completely, and this is causing his kidneys to swell, and that is what caused the bleeding. He has to have a VCUG next Wed. The dr. said this could be caused from a stricture, or possible nerve damage, or maybe just plain laziness. He may be hurrying too fast and not emptying completely. And since he is a typical 6 yr. old that waits till the last minute sometimes and is in and out in a flash, I wouldn't be surprised if that could be part of the problem. And it seems funny, that he got a great report in June, started school (1st grade - all day) in Sept and now this. I have to wonder if he's not going to the bathroom at school every day like he is suppose too or just rushing in and out not going all that he should. We now are pushing more trips to the bathroom, urging him to take his time and go till he's done and then he has to go back 10 mins later to see how much more he can go. The dr. said if it's around an oz or so, that is ok, but if it's more, that's not good. So far, so good. He's been going alot the first time and not much the second, so hopefully this will help. If not, I don't know what will be next. He did say we may need to start cathing again. We did that for awhile when he was little and not too thrilled doing it again on a 6 yr. old, but if it has to be done, then we'll do it. If it becomes a permanent thing, we will consider the mitrafanoff, making us believe even more that we made the right choice when he got the cecostomy. His appendix will still be there if we need it..

Update: The stricture in the urethra was caused by the bowel attaching itself there. The recent reflux was because this same area shrunk down.  Our urologist said he sees this in kids as they grow.  They grow, and the stricture shrinks.  He told us that we may have to cath occasionaly just to keep it open till he's in his teens.

From Nova 

I haven't actually purchased a kidney vest yet, but these might some good leads for you. A t-shirt type protector under SportsNMore.  You can see a picture of it under their website or can contact them at Sports N More, 1710 Allied St. Suite 29 Charlottesville, VA 22903 804-817-3405, fax is the same number. It was a heart and kidney protector for $39.95. Another company's name is sports performance products PO box 619 Evans, Georgia 30809. Their web site is www.sppinc.com. They have a "rib protector" that works well to protect the Kidney area, although it is not advertised as such.. It cost us about $50-$60. It might be geared more for the older kids.

 

 

 

New Colostomy & Pullthrough Operation

Single Surgery Option

From Karen B. (Mom to Sammy)

I sent the info on the single surgery post to Dr Pena to get his opinion, and thought I would send his answer on to all of you...(posted in yr. 2000)

 

Herewith, you will find my comment about the letter that you sent me.

            In operations designed for imperforate anus and Hirschsprung's disease, usually, have been done all over the world in 3 stages which are colostomy, pull-through and colostomy closure. The tendency in the last years have been to try to do less operations in order to avoid suffering and trauma to the patient. Therefore, some surgeons have been trying to do 2 stages and then 1 stage. In order to avoid even more pain, they are doing a laparoscopy procedure, which means not to open the abdomen but rather introduce optical and surgical instruments through a small incision in the abdomen and try to do everything that way. That has been already presented in several meetings all over the world and the leader of that tendency is Dr. Jorgesson in Birmingham, Alabama. I personally believe that we should try to promote as much as possible, any technique or any advance that tends to decrease the suffering and number of operations to patients. However, we should be very cautious in progressing in that direction. The progress should be done provided it is demonstrated that we don't harm the children. We should keep in mind that the main problem in patients with anorectal malformations is the sequelae of fecal incontinence. Those operations and approaches are designed to decrease the number of operations and incisions, and therefore, pain. Nobody has ever demonstrated, in terms of bowel control, those patients do better. The rationale of thinking that by doing that approach without the posterior incision, it may decrease the damage of the sphincter, is a theory that remains to be demonstrated with the long-term follow-up of those patients. In addition, anorectal malformations are a spectrum of defects. That should always be kept in mind. In that spectrum, there are malformations in which the rectum is located very low and a very small incision done from below repairs the malformation in 2 hours, the patient does not need a colostomy, the patient may eat the same day and the results are excellent. If surgeons generalize and try to operate on all kind of cases in the approach that was mentioned in that letter, then they will be subjecting the laparoscopy patients that don't need an operation through the abdomen. In other words, they have to go through the abdomen to solve a malformation that can be repaired without opening the abdomen. There is one particular malformation called "imperforate anus with no fistula", in which the patients are born with the rectum connected to the bladder neck. That has a very bad prognosis in terms of bowel control. Fortunately, only 10% of the male babies are born with that particular defect. That malformation is the only one in which we have to open the abdomen to repair the malformation. That particular malformation could be approached laparoscopically, and perhaps, that would be a benefit for the patient. In all the other 90% of males, the malformation is repaired via posterior sagittally without opening the abdomen and I don't see the reason to go through the abdomen for something that can be repaired from below. The issue of colostomy or no colostomy is a matter of the amount of risk that a surgeon and the family wants to take about a patient. There is no question that many malformations can be repaired without a colostomy. However, if a patient has a complication namely, infection and adhesions, he may suffer from more sequelae than otherwise. Also, when the patients are approached as newborns without a colostomy, there is no way to know exactly the type of defect that the patient is born with and the operation is actually an exploration. Unfortunately, the worst complications that I have seen are patients that were operated on at other places and came to our hospital suffering from damage to the urinary tract and it happened in patients that were approached as newborns without a colostomy. So many of those patients suffer from severe injuries to the urethra, damage to the vas deferens, damage to ectopic ureters and neurogenic bladder. To summarize, we should always be open minded and enthusiastic about progress in surgery. We should encourage all those surgeons to continue trying and moving in that direction to repair those malformations with less

trauma to the patient. But, it should be done very carefully, being very critical, having a record of the operations, following all those cases long-term and reporting the complications when the babies suffer them. I hope this information is useful for you.

Colostomy Care

From PTL Moms

Stephen’s Experience

Supplies

We used Little Ones by Convatech. It is a one piece system and seemed to work fine. Our ostomy nurse said that if we used the two piece system we would have to snap it together when it was off of Stephen - because he was too little (4lbs.) and it would hurt him- which defeats its purpose. Since this negated the advantage of a 2 piece, we never tried it. We used the stomahesive at first but later found that it wasn't too useful. We also used a skin prep w/out alcohol (alcohol stings) by Convatech called Allkare.

Making the Bag Stick

We found that putting the bag under a warm light bulb to soften it and then holding it on the skin for a few minutes afterward helped it stick. Sometimes, we even used a blow dryer on LOW heat to soften it before or after attaching it. We would blow the air all over Stephen's little body and make a game of it. He loved it! Whenever the bag leaked - before taking the bag off - we would try to analyze where the leak happened. Often, this analysis helped us figure out what to do differently. For example, Stephen was so small that even the Little Ones wafers would go down into his leg crease. We cut the wafer so that it was above his leg crease. If we didn’t, every time he moved his leg around he would loosen the wafer and eventually it would leak.

Removing the Bag Isn’t Painful

My husband took a piece of wafer and attached it to his own skin. After a while, he peeled it off. He tells me it didn't hurt at all. Stephen used to scream when we pulled it off and I was very upset thinking I was hurting him. When I realized I wasn't, I relaxed and he did too. Our emotions really affect babies.

Emptying the Bag

The best tip (besides the light bulb) we got was to place the wafer on so that the end which we would drain into the toilet was coming off the side of Stephen's tummy. This made it much easier than having it come straight down towards his knees.

 

Making the Bag Stick

From Ccmbus

When Scott was six weeks old we moved from San Diego, CA to Austin, TX. We brought the bags with us on our travels. They all didn't stick. I don't know if it was due to the 5-day hot truck drive or what (it was July and about110 degrees in Austin). A new batch of bags worked fine.

Note: Someone else on-line had a similar experience where bags exposed to high temperatures wouldn’t stick.

From Jane D.

We cut little V shaped notches along the outside of the wafer. Maybe 5-6 of them. We found there was too much wafer and it would buckle as he sat up, crawled around, etc. This gave the wafer room to spread and stick, not buckle up around causing leaks. I also kept onesies on him as much as possible which helped keep things in place.

From Karen (Mom to Mary, 5.5)

We keep the pouch emptied every two hours or so. Any weight in it at all pulls the wafer off. Also, we do not use a skin prep, but use Hollister's Medical Adhesive. You spray it on the wafer before applying it to the skin. It is very sticky and helps keep it on about a day longer. Wearing onesies has been the number one tip for us. Staying away from clothes with waistbands really helps.

 

Application Instructions and Tips

From Cindy

Q1) He wiggles so much its hard to get it to seal

A!) Try giving him a warm bath and using a hair drier on low to relax him and dry the skin thoroughly - allow him to have his bottle or a special toy or treat while he lays down for you (sometimes a good video will work). Have everything ready and have him as dry as possible before you even lay him down, that way he will not have to lay still for so long. Cut your bags while he is playing in the bath, apply the paste or a ring at that time as well, because the longer the paste sits, the faster it will get hard. Eventually the paste should become as stiff as the wafer, if it isn't, you may just want to forego it. You can even warm the appliance with a hairdryer, making it a little more pliable, and it may make his tummy feel nice to have something warm against it. (be careful not to get it too hot)

 

Q2) bags leak when he has gas and pop off

A2) There are ostomy bags that come with vents - also you may be able to give him some medication for the gas or change his diet. Excess gas can be caused by swallowing a lot of air, crying and fussing, and by eating foods like bananas, beans, etc.

 

Q3) they are not lasting more than 12 hrs and his skin is red

A3) Check with your ostomy nurse, the system you have may not be best for your child - there are lotions (without oil) that can soothe the skin, mylanta also works well, you dab some on with a cotton ball and blow dry with a hair dryer - also bathing and allowing the air to heal will help reduce the redness. You can leave the mylanta on the skin and apply the bag when it is dry.

 

Q4) the stoma paste does not come off with the bag making it real tough to get the wafer off without hurting him

A4) Try not using the paste - if paste is necessary it is not required that you get it all off, it will protect the skin underneath, just be sure to remove all the stool from his skin by washing gently or bathing.

 

Q5) the adhesive remover hurts and skin prep burns

A5) The skin prep hurts because his skin is already red (stomahesive paste will also hurt because there is alcohol in it) - adhesive remover is not really necessary, you can wash gently after a bath, if there is some adhesive left on the skin it will not hurt him

 

Q6) hard to fix the diaper behind it, the diaper cuts it off and causes it to blow off when he (well you know)

A6) You might try rolling the diaper down twice in the front and then taping it - this unfortunately does not work with the velcro diapers, but you may be able to use some good cloth tape or something like hypafix to keep the diaper in place if you can not find a diaper with the old fashioned tape tabs. A pullup may be a little better as well, because they will stretch as the bag fills with air, allowing you a little more time to get to the bag and take care of letting the air out.

 

Q7) bag comes out of his pants when he’s playing and the little monkey pulls it off - it’s a two piece (I did order a belt but its going to take a few days to get here) or if I pick him up his bag pops out from under his shirt and people stare

A7) Try putting him in overalls or making some straps to keep his shirt down in his pants. This provides easy access for you but not for him and the bag will not pop out in public. As far as people staring, ignore them or explain to them what it is, most people have never seen an ostomy and do not know what it is. A belt will be helpful in keeping an appliance on but it goes under the bag, which will not keep it down under his clothes. You can stitch a cloth bag to cover the appliance, a good t-shirt fabric is most comfy against the kids' skin.

 

Q8) any one come up with a system to keep these bags on past 12 hours with a toddler

A8) It will take weeks, possibly even months for his system to settle down and his stoma to become a normal size - in the meantime just keep trying to keep the bag empty of stool and gas - also keep the area around the stoma as clean as possible. A two piece system may be very helpful, as you can take off the pouch and bathe him with just the wafer on, keeping the stool away from the skin and checking on how the wafer is doing. There are also rings from Nu-Hope called barrier rings, and they work much better than stomahesive paste for us, they are stretched to the size of the wafer opening and then applied to the back of the wafer - they have a healing property and also adhere better than the wafer itself. We have increased our wear time from a day to three or four days, one time it lasted 7 days.

 

Q9) or when the seal breaks how do you take off the bag that is still on without hurting him so much

A9) Using one finger, press gently but firmly against his skin and then begin to peel off the appliance, pressing against his skin as you go. This is a gentler way than to just pull it off quickly, and is less irritating to the skin. There is a cleanser called orange cleanser that is all natural that is great at loosening adhesive without irritating the skin. It is a household cleaner but it is all natural. You don't have to always get everything off, some of the adhesive can remain, as long as the stool is off of the skin.

From: Amanda (mom to Logan 8 1/2 mths, HIA, renal reflux, and possible neurogenic bladder)

1. Be sure that you have thoroughly cleaned the area and that is totally dry.

2. Try swabbing the area with benzoine (available in single swab packets that are very convenient) and allow to dry slightly before attaching the bag. There is another product made by 3m that we tried but it wasn't as good as the benzione.

3. Get the wafer as warm as possible before applying. We also found that the bags with the thicker wafers were significantly better than the ones with the thinner more flexible wafers. I don't remember the order numbers now but your nurse should know.

4. Once applied keep your hand over the wafer as long as Mark will let you.

5. Try to keep Mark in an non-sitting position until the wafer has cooled somewhat.

6. Rinse the bag frequently to prevent the poop from having time to eat through the wafer.

I also found that once Logan had been weaned from breast to bottle and the poop was subsequently firmer that the bags lasted significantly longer. I am in no way suggesting that you should put your baby on formula, if you are breastfeeding, just to make the bags last longer. It is just an observation.

I did find it was a good idea to keep several bags cut and ready to go so that the change was faster. The blow dryer is great for warming the wafers as is sticking them down your pants. Another thing that made them last longer was when Logan gained some upper body strength and starting sitting up better instead of in that newborn slump.

From: Rebecca (mommy to Noah, HLHS, HD)

Noah is now 5* months old. We were having excellent success with bags staying on until we decided to change them, around once a week. Lately, due to his increased activity (rolling, kicking, etc.) they are only lasting 3 or 4 days before a leak "springs". We use Convatec Little Ones bags. We clean his skin off so it is free of poopoo with a wipe, then while I cut the bag down (hole in the middle for the stoma AND the outer edge of the wafer so it's only slightly larger than where the bag is attached to it) and put the closure thingy on it, my husband rubs the entire area that the wafer is going to be touching with sterile water and a q-tip and then dusts on karaya powder just to one inch around the stoma and cleans off any excess. I remove the paper from the wafer and apply a ring of stomahesive around the hole I cut in it and let it sit for at least one minute. daddy then puts the bag on Noah and presses/rubs the wafer down firmly.

 

Keeping the Skin Around the Stoma from Breaking Down

From Lindy (mom to Nick, 19 yrs.)

Note: There are probably hints on this in sections above and below too.

If any of you are having trouble w/skin on the belly beneath the colostomy bag try this: Use a shampoo that is ph balanced to the skin and use this as your soap. I am a hair stylist and Nick's belly NEVER got a rash because we kept the ph of his skin stable. The surgeon starting telling other mom's. It makes sense. Our skin, hair, and nails are 4.5-5.5 why treat them w/harse ph that is on the alkaline side. The only reason Johnson's no more tears works is the tear duct of the eye is the same ph as the shampoo. Most over the counter (drug store) products are the same ph as janitor in a drum and I would not put that on my baby. Get some litmus paper from your druggist and start testing what you use on your babies.it should help

Supplies

From Liz (Mom to Noah)

I received a great catalog that features a variety of ostomy supplies. Here is the supplier's information

The Parthenon Co., Inc.

3311 W. 2400 S.

Salt Lake City, UTAH 84119

Hours: Mon - Fri 8:30 A.M. to 4:30 P.M.

Call TOLL Free 1-800-453-8898

Their Logo is "OSTOMY SUPPLIES - We simply sell them for less"

homepage www.parthenoninc.com

e-mail nick@parthenoninc.com

 

Healing Skin Around the Stoma

From Roxanne (Mom to Remington, 6 months, HIA)

With Remi we sprinkled the stomahesive powder around on all of the broken skin, sealed it all with 3-M No Sting Skin Barrier Film (no alcohol) & when dry put the Little Ones wafer on. Her broken skin was healed the next day.

 

Loop Colostomy

From Surgery of Infants and Children

edited by Oldham, et. al., 1997 edition, Rectum and Anus Chapter by Charles Paidas and Alberto Pena, pg. 1345

A descending colostomy is the procedure of choice for ARMs. In general, a completely diverting descending colostomy or a descending loop colostomy can be created in a newborn with a high ARM. Complete diversion is difficult, if not impossible, with a loop colostomy, and, thus, the potential for continued communication between rectum and urinary tract is high. Also, a loop colostomy in contrast with a completely diverting colostomy predisposes the child to urinary tract infections. The propensity for continued overflow into the distal bowel and consequent abnormal bowel distention can compromise the definitive repair as well as bowel motility. Postoperative constipation can be associated with megarectum, secondary to fecal impaction, created by this overflow into the distal bowel. If a loop colostomy is created too loosely, there is the potential for prolapse of the proximal stoma. The most common error is opening the colostomy too distally, leaving one with an incomplete length of bowel for the definitive repair, and thus forcing the surgeon to gain length by performing a laparotomy.

 

From page 1358

Postoperative (pullthrough surgery) constipation is thought to be caused by a hypomotility disorder of the ectatic rectum. Iatrogenic causes of postoperative constipation following PSARP (pullthrough surgery) include loop and transverse colostomies that allow passage of stool into the distal segment of bowel as well as delays in definitive repair (i.e. operation one year after creation of the colostomy).

 

Our Experience

Stephen was given a loop colostomy at birth. Our pediatrician prescribed Gantrisin, an antibiotic, to prevent urinary infections until Stephen was 4 months old. Stephen had his pullthrough at 6 months. At that time, the nurses had to clean out the distal bowel. My husband and I were present for that procedure and there was definitely poop in there. Because Stephen was young, there was not enough poop to have caused permanent damage. After Pena performed the surgery, he told us that there was just enough distal bowel available for him to do the pullthrough without having to do a laporotomy.

 

PULLTHROUGH

Choosing a Surgeon

Dr. Pena is a world renown pediatric surgeon specializing in anorectal defects. I would recommend using him or someone he recommends for the pullthrough surgery. We went to Dr. Pena for the pullthrough and used a local surgeon, Dr. Leslie Taylor at UNC, for the closure. Dr. Taylor has taken Dr. Pena’s class three times and even brought a complex patient to him so she could assist. She is a fantastic surgeon and person! Make sure whatever surgeon you use has been trained in the Post Sagittal Anorectalplasty surgery (PSARP) also called the "Pena Pullthrough."

From Mary  (Mom to Patrick, IA)

I was an O.R. nurse here in D.C. for 8 yrs. I researched carefully before taking Patrick to Pena. I took him to the best pediatric surgeon I knew (and worked with) at Fairfax Hospital and he told me to go to Pena. This surgeon said that Pena gets such good results not only because he does so many pullthroughs, but because he is such an unbelievable technician. He said he had never seen anyone operate the way Pena does and this came from a surgeon that I thought was excellent.

From Karen B.

If asked, Dr. Pena would recommend Dr Shaul or Dr Reyes from California for patients on the West Coast. Unfortunately, there really isn't anyone else with the experience that Pena has regarding bowel management and anorectal malformations. There is Dr Shaul in California, the docs at Boston Childrens and Dr. Reyes also in Calif., there isn't anyone with the experience or dedication to this type of defect.

From Dee (mom to Stephen)

Dr. Pena worked diligently for years to perfect the PSARP, i.e., the Pena procedure. Many of you have no idea what the docs used to do (unknowingly) with our kids. They would slice open baby X and place the rectum wherever. Dr. Pena is still fixing many of these kids. He has devoted an entire career trying to figure out the best way to give our babies a good life. This is all he does, he is not a general pediatric surgeon who performs soup to nuts in a hospital, he has focused his whole career on their little butts. He travels all over the world and performs surgery on poor children at no cost. He trains other doctors and teaches them the "Pena Pullthrough". Nobody thinks he is infallible or that any other Dr. is inferior, but please give the guy his due. He is a gentle, modest man that will share his knowledge and expertise with any doctor that will listen.

From Michele (mother to cassandra, 9 months HIA, TEF, single kidney, hemivertebrae,heart defect)

Without doubt Dr. Pena is the expert but there is a pediatric surgeon in Chapel Hill UNC who has performed all of my daughter's surgeries and I feel is very knowledgeable. So if the family is unable to go to New York as our family was. I would contact him. He follows my daughter very closely and is always available for questions. Timothy Weiner 919-966-4220

Terry (mom to Corbin-20 months, Septo-optic dysplasia, Optic nerve hypoplasia, and colonic atresia)

Dr. Weiner was our sons surgeon too!!!! I just love him. We have had a great experience with him and UNC. Corbin's complications with HIA have caused Dr. Weiner to refer us to Dr. Pena in NY. He is also planning on going with us to NY to observe, 4so I know that his ego is not too big.

Note: Dr. Taylor who I mentioned above is also at UNC Chapel Hill!

Timing of the Surgery

From Anne (Mom to Michael, 18 mo., HIA)

Date: March ‘97

There is only some very preliminary evidence that performing the pullthrough surgery earlier than 6 months may produce better results. In Dr. Pena’s recent article, “Anorectal Malformations”, he gives the following information:

Data in Table 6 suggests that operating on these patients before they are 6 months of age may be advantageous in terms of bowel control. Two groups of patients (one younger than 6 months, the other older than 6 months) were operated on; the quality of the sacrum was no different in either group, yet the results were better in those patients operated on earlier. A study by Freeman et al, suggested that, at least theoretically, by placing the rectum in the right position early in life, new synapses could be established. These synapses could provide better sensation and better function of the sphincteric mechanism. These results (Pena’s table) are preliminary (not enough date to be significant yet), but must be kept in mind. In addition, because they were operated on early in life, these patients had a colostomy for shorter periods of time. The anal dilitations performed after the main repair were much easier for the parents and the patients had no memories of painful rectal maneuvers.

From Mindy (Mom to Zack)

I have spoken to many doctors about the danger of putting babies under anesthesia. The risks involved dramatically decrease at 6 months of age. Many surgeons do not risk doing a serious surgery on a baby under 6 months unless it is absolutely necessary. Pain medications can also greatly increase the chances of apnea. Zack suffered from apnea during his colostomy procedure. It is very common in newborns. It is still scary enough to make many surgeons wait until a certain age or weight has been reached.

From Mary  (Mom to Patrick, IA

I think the reason for some surgeons waiting until a child is 15-20lbs. is because the surgery is easier to perform at that time. The anatomy is larger and easier to work with. Since Dr. Pena is so experienced he is able to perform these procedures while the child is still very young.

 

The Surgery Itself

Unfortunately, I don’t remember a lot of the details surrounding the pullthrough although Stephen’s was less than a year ago. A distal colostogram was done before the surgery. It scared Stephen but it was over quickly and I don’t think it actually hurt him. Stephen was admitted to the hospital on a Tuesday afternoon and his surgery was first thing in the morning on Wednesday. By midnight on Wed., he was off painkillers as he seemed to be in more pain from teething than the surgery! During the day on Wed, when he ran out of pain killers it was obvious because he would cry. But by Wed. night, the pain killers wore off and he didn’t complain at all. We left the hospital on Thursday night. This quick departure was at our request as I was still nursing the twins. The after surgery care was relatively simple - rinsing off his butt with water and putting a cream (bacitracin) on it. Chucks - disposable bed liners for incontinence - are invaluable for the water cleaning. You can purchase chucks at the supermarket or a drug store. They are rectangular and come in many sizes. The bottom is lined w/ plastic and the top with a cotton type of material. Nurses at the hospital can give you a few if you ask for them. By using a chuck, I could do Stephen’s water washing anywhere - on the floor, a bed, etc. Stephen did leave the hospital with a catheter but it fell out on Friday morning (because the medical resident had cut the end off - boy was Pena mad!) so I don’t remember what extra care this required. He also had tape marks all over his body that I quickly discovered did not come off with soap. Make sure you ask the nurses for some orange liquid “tape remover”. It works like magic! For four weeks after the surgery, we were told not to put Stephen in any equipment that required his legs to be straddled - for ex. swings, johnny jumpers, most snuglies, exersaucers, etc.

Note: A foley catheter is held in place in the bladder with a balloon. To remove the catheter, someone has to insert a needle syringe into the tubing and draw back to deflate the balloon then it will easily slide out of the urethra. It's not going to come loose on it's own and it's not going to just slip out. Tugging on the tubing is unpleasant, so a baby will know if he's doing it, and he will stop!

Experiences of PTL Members

From Cheryl (Scott's mom, high ia, 4 3/4yrs)

My son Scott had his pull-thru when he was 9 months old and his bladder virtually went dormant afterward. He had a bladderneck fistula. He was finally released from the hospital with an SP (supra-pubic) tube stitched directly into his bladder. That tube became dislodged and then Scott had a catheter in his urethra, which drained into yet another bag, until finally six weeks later he peed on his own. Just in time for his colostomy to be closed. We were told that when surgery is done to the bladder, sometimes it will react with dormancy. Scott was also on Ditropan during this timeframe. I don't recall any other side effects. Scott was so uncomfortable I gave him some Tylenol w/codeine, just so both of us could get a good nights sleep. Well, it turned out that the Tylenol has a reverse reaction to the Ditropan and probably caused the bladder dormancy to continue longer than it should have. I'll never do that again.

From Nova  (mother to Skyler, 3, VACTERL)

To add info, I was told that, not only does the bladder go dormant, but if the fistula/surgical site was large, then you'd want the suprapubic tube to drain the bladder. By NOT allowing the bladder to fill, then the surgical sutures at the fistula site are not taxed by the expansion and contraction of the bladder.

From DM (Mom of Ian 8.5, HIA, Mike 11)

The two reasons the fast heartbeat is sometimes seen after surgery are usually either pain that hasn't been relieved with the medications given so far, or there's a bit of dehydration from the surgery that hasn't been replaced yet say, with IV fluids. It's hard not to worry if the heart rate goes up, but hopefully once rehydrated and made comfy, the heart rate will go back down.

Dilitations

Importance of Dilitations

From Dilatations, by Dr. Pena in PTN Newsletter vol. 7, number 4

At the present time, the basis of our pullthroughs are to determine the limits of the sphincter electrically and then to accommodate the rectum within the limits of the sphincter. That means that sometimes for a little baby, we end up with an anus that is smaller than normal for his age. The new anus has to be stretched gradually without destroying the sphincter, until it reaches the size that is normal for the patient’s age.

Note: I highly recommend getting and reading this entire article

From: Laura (Mom to Brandon)

The dilitations aren't to help the poop to come out, but to make sure that the suture site doesn't harden into a tight ring. After Brandon's pullthrough surgery, we only had to dilate him for something like 2 weeks. This wasn't near long enough. Because of this, a stricture formed. It felt like a ring of bone that was about the circumference of my pinky. I didn't learn that it was a stricture until about 4 months ago. Brandon's current surgeon said that it was caused by not enough dilitations. The stricture was too small for the bowel to retreat back up inside after a bowel movement, so therefore, a prolapse was formed. Brandon had his prolapse "trimmed and tucked" back in September. And it looks 110% better. Also, there is no longer the bloody, mucousy leakage that there was with his prolapse sticking out a whole inch. It has really made a difference. So, bottom line, if the doctor happens to not think that dilitations are unnecessary, insist on them. They are definitely necessary.

 

How Tos of Dilitations

            We found that it was very important for us to be calm and relaxed when doing dilitations. It is amazing how even young babies sense and reflect their parents moods and attitudes! It helps to remind yourself that this is something you are doing FOR your child not TO your child. One of us would entertain Stephen - singing songs, playing w/ toys and stuffed animals, etc. and the other would do the dilitation. We found that using lots of KY jelly (which we used to place on a gauze pad and warm in the microwave - just for the first week or so) and holding Stephen’s knees bent over his tummy (actually we held his ankles together w/ one hand) helped the dilator go in smoothly. We also watched Stephen carefully and waited until his muscles (abdominal, legs, etc.) were as relaxed as possible (which was often completely relaxed) before inserting the dilator. I have to admit that dad was much better at being able to entertain/distract Stephen and get him to relax. You will be amazed at how quickly this becomes just another part of your routine accepted by both baby and parents. Over time, you will find one parent can do it alone After a while, Stephen even stopped crying during them. We always nursed Stephen right after the dilitation.

            On the days we had to increase the dilator size, we would put a prescription cream (zylocaine?) with pain killer on the same size dilator we had been using. We would insert this dilator briefly, then we would insert the larger dilator afterwards. The idea is that the smaller dilator gets the cream where it needs to be to numb the area. Other members of the pullthrough list have recommended Dermoplast (spray), Dibucaine (ointment), and anbusol (which is over the counter) for the same purpose.

From Dilatations, by Dr. Pena in PTN Newsletter vol. 7, number 4

Anal dilatations after a well done operation, in general, should not be extremely painful. .. Parents have asked me if anesthetic creams help prevent pain. My experience has been that they don’t really help.

From Susan (Adult, HIA, 5 Weeks postop)

Doing the dilatations is awkward and not my favorite time of the day, however, they have not been painful in my experience. Sometimes I feel a mild stinging sensation afterwards, which I'm told comes from the K-Y Jelly.(!) I think perhaps the stinging is related to how much rash or skin irritation I have at the time.

From Donna

One trick that I used when Mark was 3-4 years old and had to go thru dilations after a prolapse repair was this; I went to Target and got a hand held beeper sized digital timer. I would set it for 30 seconds and to divert Mark's attention from the initial insertion, I let him hold it and PRESS the GO button. He then had to do the count down for me so I would know when to pull it out. At that age, he could not count the larger numbers, but when it got to 10-9-8-7-6-5-4-3-2-1!!! He loved telling me to pull it out. It was always understood too, that it was not a toy. BUT - It would become HIS TOY when we were finished with the entire process. As that time grew nearer, we counted the days until he would GET THE BEEPER! This seemed to help us. KY jelly of course. That's how we got thru it.

Dr. Pena’s Dilitation Schedule

From Dilatations, by Dr. Pena in PTN Newsletter vol. 7, number 4

Every day you will dilate the new anus twice a day. Insert the dilator for 30 seconds twice in the morning and twice at night, always before meals. Increase the dilator size once a week until the desired size is reached.

Age                 Size

1-4 mos.          12

4-8 mos.          13

8-12 mos.        14

1-3 yrs.            15

3-12 yrs.          16

>12 yrs.           17

Once the desired size is reached, the colostomy may be closed. Dilitations should continue twice a day until the dilator passes easily without pain - usually 3-4 weeks after the last dilator size was reached. Then, the parents may start tapering the frequency of the dilatations:

Once a day for a month

Every other day for a month

Every third day for a month

Twice a week for a month

Once a week for a month

Once a month for three months

If at any time the dilitation becomes difficult, painful, or bloody, that is an indication to dilate twice a day and restart the process.

Note: Once we were on the once a day schedule, we did daily dilitations for an extra 10 days or so, so that we would end up always changing dilitation frequency on the first day of the month. This made change time easy to remember.

 

Disposable Dilators

From Marti

I have finally found a company who makes the disposable dilators that we have used for years. They are made from silicone, and cost $9.00 each, or $60.00 for a set of 8 sizes 7-14. I'm not sure if any of you have to pay for dilators, and I do know that some of you pass them around. The disposable dilators are Made by Specialty Surgical Products, Inc. The phone number is (888)878-0811. They can easily be sterilized by boiling.

Note: The metal ones cost a lot more!

Prolapse

What a Prolapse Is

From Babette (mom to Michael, 2/12 HD etc.)

Prolapse is when something internal is "falling" out, i.e. rectal prolapse, uterine prolapse. I can tell you what it looked like when Michael's rectum prolapsed. One night after Michael had been given his nightly laxative, he was pushing SO hard (as usual!) we went to change his diaper, and there was a reddish/pink ball definitely attached to him, coming out of his anus. It looked like a stoma - color and texture similar to a tongue. (I know this is gross!) In size, this was a little bigger than a walnut, smaller than a golf ball. Michael was very upset. For weeks he would cry "My poo-poo, it hurts", but we didn't know exactly what was making him hurt. The colon that prolapsed retracted back inside of him. However quite often after that it would slip out. I got to where I would just push it back in. More times than slipping out it would just bulge. His surgeon repaired this.

From Dan (Adult, IA)

There are several kinds depending on how much of the tubing sticks out, whether it's just the inner lining of the tubing (mucosal prolapse) or actually the outer edge of the tubing (full prolapse). The mucosal prolapse first off is just tissue and has no muscle power. You can't do anything with it. Secondly, since it sticks out it feels to the surrounding skin like something is coming out making it even less likely you'll have normal bowel moving sensations.

 

Surgically Correcting a Prolapse

From Me

Stephen has a fairly slight prolapse. My local surgeon thought it was probably not worth correcting at this time since Stephen isn't having any problems from it but she recommended I check w/ Dr. Pena's office to see what he thought. Kathie G. (Dr. Pena's bowel mgt. nurse) told me to mail a picture to Dr. Pena. I did. Kathie called back today and said that unless it is bleeding or is constantly wet, they don't like to do the correction - esp. since there is a chance that it would just come back anyway. She mentioned that lots of pushing from constipation would make it worse and encouraged me to keep Stephen's stools soft. She also said that Dr. Pena doesn't want any poop coming through immediately after a correction and Stephen wouldn't be able to eat for a week if they had to do it! On another note, Kathie also mentioned that if a prolapse only occurs on one side, it is often because the muscle is stronger on one side than the other.

From Dan (Adult, IA)

Since they give you all your nutrients, fat, and liquids in an IV, there is no real sensation of hunger during the time you are "NPO" (no food by mouth) which is about a week.

From Laura (mom to Brandon, 5 today, HIA and neurogenic bladder)

My son Brandon had a rectal prolapse (about 3/4 to 1") . He had a revision anoplasty to trim it back and tuck it in. The main reason we did this was to eliminate the mucous that he was constantly passing. His underwear/pullups stayed wet because of it. And hopefully, now that there is skin tucked into his rectum, he will be able to "feel" stool coming out and know to get to a bathroom. Before, he had to poop a lot before he knew he had pooped. It was only when the stool reached the skin on his butt cheeks that he realized he had poopy pants. His prolapse also bled some when it would get irritated. The corrective procedure wasn't complicated, but it was deja vu. We went through the diaper rash stuff that we had to go through after his closure. And it wasn't any easier. He was pretty much "back to normal" two weeks post op.

Brandon was in the hospital for about a week, he was admitted the day before and given the GoLytely via the NG tube. THAT was the biggest hurdle. They started the GoLytely at 2:00 p.m. and it was after 1:00 a.m. before they took the tube out and he still wasn't producing "clear" results when they did that. However, they finished the cleanout the next morning in the OR before the surgery. He couldn't have anything by mouth for about 5 days, and then started on liquids. The worse post-op problem we had was the fact that we couldn't do enemas on him and the stool was a non-stop flow from his little bottom. It was pretty sore and raw. We cleaned it by standing him in the tub several times a day and rinsing it off with a hand held shower head. You definitely will not be able to wipe her little bottom at all. We were allowed to do enemas about a week and a half post-op and then things started to improve. He did try to avoid sitting for about 3-4 weeks afterwards. He didn't seem to be in pain, it was just uncomfortable for him to sit.

From Nova (mom to Skyler, 5 HIA)

Before the repair, we had about 3/8" prolapse on a normal day. When the peristalsis was hard at work, it would protrude more. This definitely kept the underpants wet and sometimes bloody, despite the fact that the enemas kept him clean. This was annoying to our son because he wanted so much to wear big boy underpants. We got the prolapse repaired at the same time that we got the Malone belly button. I believe that the fix helped his self image. He no longer saw a red cherry sticking out of his bottom when he looked in the mirror, and to him, that was a big deal. His underpants are now dry all the time. He stays clean with Malone antegrade enemas administered thru his belly button. He runs the risk of having a Bm breakthru about 24 hours post enema, but even though he can't control it, he can now feel it and get to the bathroom before anyone notices a problem. He is a new boy with these changes. I can't get Dr. Pena to agree on this one, but I personally feel that the foley balloons served to aggravate the prolapse condition with our boy. Occasionally when we gave him the rectal enemas, he would cough and pop out the balloon - very painful for him! With his new fixed anus, I didn't want to have to do rectal enemas any more because of this hunch that I had regarding the prolapse. The Malone would enable us to leave the anus alone as it healed - except of course for the fine tuned dilators. Speaking of which, if you plan to have it repaired, I am guessing that sooner is better. Our boy was 4-3/4 years old, and repeating the dilation process on a child of this age was not easy. I don't know if younger is better, but I DO know that dilations at 4-3/4 really stunk! I personally think this part is even worse than the 7-10 days post surgery without food! Nonetheless, it had to be done, and I am glad that this is now behind us. His little butt still looks great, despite the fact that he has "very disorganized" muscles as quoted by our surgeon.

Jennifer,(Mom to Taylor 3yrs

We just got home yesterday after a week in the hospital for it so I will just give the highlights :). We got there last Tues. night and she was given the go-lytlye thru a tube in her nose to clean her out. She got it at 5:30 pm and it goes in 4 hr intervals, so if it did not clean her out fully she would have had to have it again for four hours. The worst part was the tube in her nose, esp. because the idiotic resident was a nervous nellie and could not get it down. The third try was the ticket and she was beside herself, but soon forgot it was there. Because she had a laxative at night and barely ate anything all day the clean out was not so bad. The other really good thing was we decided to keep her in diapers for it so she basically just played and watched her videos while we changed her every 20 or 30 minutes and it was not bad at all. Since she just started potty training it seemed so much easier then having to keep her sitting on the potty for it. She couldnt have anything past 8am the next morning and by the time they brought us down it was 3pm, which needless to say I was pissed and she was thirsty and hungry but was a troooper about it. She actually fell asleep waiting to be brought in which worked out well. They put in the central line in her external juggular vein, which I just found out is attached to the vena cava and after this is "gone," no one told me this and as Dr. Rosen put it "she needed it and used it and now it is gone." She woke up and it didnt bother her. She did want to go home at night when she was tired and did ask for food for the first couple days. The feeding through the central line was fine and she had no problems with it in her neck. On day 6 we started clear fluids and yesterday, day 7 she was able to eat and go home in the afternoon. We played in the playroom whenever it was open and managed to get through it. One note about the rigid adherance to this protocol, Kathy G. told us that Pena is very proud of his method of repairing the prolapse because he has never had one patient get an infection. This was when on day 5 I began pushing for her to at least be able to drink some sips of water or have some ice chips. Since she had no catheter and was peeing anyway in the diapers, but this was explained that anything in her stomach can cause the colon to react. We have to go back in a week or so, and start dialations I guess after that. The stiches dissolve she had absolutely no pain, not even one time took tylenol. The anal opening looks better but still I feel like I can see some pink tissue right inside, is this normal? I would hate to have gone through all that and have there still be some prolapse there. Pena did tell us that there should be some, not drastic improvement for her for continency as far as control and feeling. I feel like it was tough but it was worth it.

Donna, (Mom to Mark, IA)

When Mark was to have his prolapse repaired, Kathy told me to bring button up shirts because we would have a line in our neck. That was ALL I was told. I knew he had to be fed and I didn't realize the importance of the spot they chose... When Mark came OUT of surgery, 1 hour after I was expecting him, Dr. Pena began to tell me that since Mark had a line in his neck during one of his previous surgeries, that he did not want to use the other side of the neck so he went for the arm. He tried and tried and tried to get it in, even brought in xray to help guide him, but it kept getting caught around the shoulder area. So, Pena resorted to the groin area. I quizzed him on the 'whys' and 'what-fors' of using the neck/not using the neck and he told me this. When you use a vein for this purpose or for this length of time, you jeopardize it's usefulness for the future. Because he wanted Mark to live a healthy and LONG life, he didn't want to bother BOTH sides of his neck because of the important veins/arteries that are in there, leading to the brain. So instead of risking damage to both sides of the neck, he went for a different location. When it was all said and done, I considered that this was a major part of surgery and that it should have been more emphasized in the discussion of 'to do' or 'not to do' the prolapse repair. I probably would still have done the repair, but I would have done a lot of additional research. After all was said and done, I mentioned it to my pediatrician. He says that 'yes' you can jeopardize the effectiveness of a vein by using it in this way. Now, with every checkup, he listens via stethoscope above the incision area and below the incision area in his neck and his groin to be sure that the blood flow sounds the same, as strong. He doesn't feel that Mark's was minimized in any way, based on what he hears. But, I think the line in his neck was not left in very long. I think it was there for closure. Dr. Pena did the closure, per our request, but he was leaving town that night. I told him as long as his hands did the closure, that his associate could follow us for post-op care. That doctor, I can't remember his name, (Nova, you may remember him, Irish, I think...) pulled that line immediately. He didn't think they were necessary and I THINK that Mark came from recovery without it. So, maybe his didn't stay in long enough for damage. I'm not totally sure about this but I think I am on the right track, based on my diminished memory... Have a great day.

From Nova

My understanding was that it didn't destroy the vein, you just couldn't use it again for surgery.

 

Living with a Prolapse

From Susan (Adult, IA)

The prolapse which occurred for me nearly two years ago made me feel like I was often sitting on something, or that there was stool ready to be expelled. So I'd go to the toilet, strain, and find nothing there. I finally realized I was making the tissue come out more, worsening the problem. My body seems to have gotten accustomed to the sensation now and doesn't misinterpret the signals often. It also makes it more difficult to wipe clean. And has more oh-so-fragile mucosal tissue exposed to toilet paper (please buy very soft toilet paper for your kids -- it's worth every penny for their bottoms). I've been using 100% cotton pads, 2" circular, to clean with. And I believe it also aggravates problems with "bowel leakage", for some reason which isn't clear to me. Isn't it amazing how much trouble a little 1/2-3/4" bit of body tissue can cause? Treating it with procedures used to fix hemorrhoids (Anbusol or Preparation H Cream or Nupercaina) did not help in my situation. If the stuff is annoying me and I'm home, I lie down on my back and stick my legs up in the air for a few seconds, and it sort of slides inside. Bet you didn't know there are a few benefits to having no sphincter! On the advice of a doctor, I tried putting a synthetic cotton ball inside my anal opening like a plug to see if I could catch the mucous and keep the outside drier. Not only was it quite uncomfortable, but it caused slight bleeding in the mucous membrane. I assumed that if I had had 100% cotton balls which are softer than the cosmetic ones, I wouldn't have started this problem. My understanding is that non-100% cotton cosmetic balls have plastic fibers or something which can create tiny lacerations in skin - and that's why some people say never to use them for skin care on your face. But who knows, because the membranes bleed easily anyway.

From Catherine (Mom to Zachary 6, IA,)

You may want to try baby wipes instead of toilet paper - we keep a box of Chubs next to the toilet for Zachary. I think the prolapse aggravates the bowel leakage because there is no stopping point for the stool and the opening is always basically open.

Dr. Pena Explains Prolapse

From Rectal Prolapse in Patients with Anorectal Malformations by Alberto Pena, MD printed in PTN News Vol. 8, No. 2, June 1999

Note: This article was printed after the above was written. I have copied only portions of it.

            Rectal prolapse is manifested as the presence of a cherry-like, wet tissue that tends to bleed easily if touched. The prolapse occurs because of lack of anchoring mechanisms of the rectum and lack of strength to close the anus. The higher the defect, the more abnormal the sphincter, the higher the chance the patient will suffer from prolapse. Since the basic reason for the prolapse is a deficient sphincter, an operation to treat the prolapse cannot guarantee that this will not happen again. Even when the basic cause of the prolapse is the lack of sphincter strength, there are other predisposing factors that make prolapse more likely to happen. These are: excessive constipation, which makes the patient constantly push, increasing the intra-abdominal pressure; or some sort of irritation of the bowel that provokes diarrhea.

            The consequences of the prolapse are first of all the negative cosmetic effect. Also, the prolapse produces constant wetness in the perineum which is a nuisance for many children. If the prolapse is significant, it can interfere with cycling, horse riding, or other activities. A very active child may suffer from bleeding of that prolapse. The bleeding is not severe, it is just constant spotting of the underwear which is also very inconvenient. One should consider to treat the prolapse when it is more than 1 cm (1/2”) out and is giving the symptoms already mentioned .

            The operation that we use to treat the prolapse is a simple one. It takes approximately 30-45 minutes. Before making the decision to subject the child to the operation, the parents must keep in mind that the chances for the prolapse to come back are higher in those patients that were born with a very high defect (recto-bladder neck fistula, recto-prostatic fistula) and patients with very poor sacrums or poor sphincters. In addition, if the patient has already had the colostomy closed, every effort should be made to avoid the possibility of a post-operative infection. Because of that, we follow a protocol that includes the admission of the patient one day before, and the administration of total bowel irrigation with Golytely. In addition, once under anesthesia, a central venous line is inserted in order for the patient to receive parenteral nutrition for 5 to 7 days. During that time the patient is kept fasting. Risking any infection could be a serious problem.

Colostomy Closure

To all who are about to go through closure, I hope this summary of our experience w/ Stephen is helpful.

 

Feeding and Length of Hospital Stay

We were in the hospital for five days. Stephen was admitted to the hospital the day before the surgery. He had a distal colostogram to check for impaction. He was given an IV and an ng tube. In the evening, he was given golytely. After the surgery we were not allowed to feed Stephen until after he either passed gas or pooped. Stephen pooped w/in the first 24 hours which our doctor said was just emptying his intestines and didn't count. (Luckily, I had his butt prepared w/ all the diaper creams...) His first food was pedialyte, than formula, than solids. He was not allowed to leave the hospital until after he had eaten solid food and pooped. The surgeon said Stephen should gain at the same rate as a normal baby his age after the closure. Note: our surgeon wanted to see Stephen every 1-2 weeks for the first 3 months after the operation. All of these visits were included in the price of the surgery. The purpose of the visits was mainly to check for signs of impaction and be sure the dilitation was proceeding smoothly.

 

Distal Colostogram

Ezra & Rebecca, Israel, (parents of Yedidya 2-1/2mo., HIA)

In case anyone might find it useful, here is the full protocol for a distal colostogram from Dr. Pena's office. I only got it after Yedidya had the procedure, but in any case the radiologist wasn't very open to suggestions about how to do her stuff. I don't think they withdrew the saline at the end of the procedure, and it leaked out for days after, which made the bags come off all the time. You might have more luck.

GUIDELINES FOR THE PERFORMANCE OF A DISTAL COLOSTOGRAM IN CASES OF IMPERFORATE ANUS

            Most children with imperforate anus have a colostomy with separated stomas. The proximal stoma is the one that is functioning and produces stool. The distal stoma is the one that does not produce any stool and we call it the "mucous fistula" or distal stoma. Sometimes, the child has a loop colostomy and it is difficult for the radiologist to know which stoma is functional and which is not. In these cases, the mother knows exactly which stoma is producing stool.

             A Foley catheter should be introduced into the distal stoma, and the balloon must be pulled back as far as possible to occlude the stoma. With this maneuver we try to fill up the entire bowel, distal to the mucous fistula. Only Hypaque must be used in these kind of studies. Barium has many serious inconveniences including the fact that it becomes petrified in the bowel, and then it represents a serious problem.

            Hypaque must be injected with a 50 cc. syringe through the Foley catheter under fluoroscopic control and video. The study must be started in AP position in order to see the entire amount of bowel existent from the distal stoma to the end of the bowel. This is a crucial part of the study which allows us to know whether we have enough bowel length for a future pull-through. Then the patient must be rotated and the study must continue in lateral position. The view must include the sacrum, perineum, the end of the bowel and the pubic bone. The anal dimple must be marked with a radiopaque material. Once the patient is in this position, the injection of the contrast material should continue using enough hydrostatic pressure to overcome the muscle contraction of the voluntary muscle structures that surrounds the bowel at the end of it. About 90 percent of the time if the radiologist uses enough hydrostatic pressures fistula will be filled up and the contrast material will go into the posterior urethra and the bladder. The injection must continue until the bladder is completely full and micturition must be provoked.

            Select and record images at the time of micturition. Those pictures should include a complete image of the rectum, the precise fistula site, the precise rectourethral or bladder neck fistula site, bladder and urethra. once this has been achieved.

            To finish the study negative pressure must be applied to the syringe to try

to remove as much Hypaque as possible.

Golytely Bowel Cleaning

The night before the surgery, Stephen was given Golytely via an ng tube (nose to stomach) to clean out his intestines as well as rectally via an enema. The procedure usually takes 3-4 hours but Stephen’s took a lot longer because we had given him lunch. Children are not supposed to have solid food for at least 3-4 hours before the clean out starts. Some doctors want the child on a clear liquid diet for 24 hours prior to the bowel clean out. Once the clean out started, the colostomy bags filled up fast and wouldn't stick. We went through a lot of bags- about one every 30-45 minutes. The pediatric floor ran out of infant bags so make sure your nurses have at least a dozen bags before they start the golytely treatment. After Stephen’s surgery, I read a tip on the Pull Through list that I think would work great. Hook a catheter tube inside the colostomy bag and let everything drain into a catheter bag. Hopefully, this procedure would make the colostomy bag stick and you wouldn't have to change it. This tip is from Shannon. It was also used by Roxanne - see the note below.

From Roxanne (Mom to Remington, 9mths)

When you 1st arrive tell the Nurse you will need some 1" pink waterproof tape & a urine collection bag with the wide tubing attached. Connect to the end of the colostomy bag the largest tube ending into a urine collection bag. Tape well the connection with wide pink waterproof tape. Make sure the tube doesn't crimp. All of the stool will go down into the collection bag, just make sure it is down towards the ground so gravity works for you. The whole process for us took about 4 hours & we never had to change a bag. Without this process you will go through tons of bags, the stool really pours out. For us this was the hardest part. But, remember it will pass in just a few hours & be done.

From Teresa (mom to Caroline, 6 , Down syndrome, low IA)

The morning of the surgery, make sure the GoLytely solution is coming out clear; that there is NO STOOL left in the gut. The nurses had trouble with the ng tube placement with my daughter and thus she was not fully cleaned out overnight. The surgeon went ahead with the colostomy closure anyway, and about 2 weeks later we had to go back to the OR for more surgery to drain a huge (small football-sized) infected abscess! And then daily traumatic trips to the surgeons office to unpack and repack a gaping wound for two more weeks until it healed.

 

Pain Killers

After the surgery, Stephen received IV morphine and rectal tylenol. The IV morphine peaks w/in 8 minutes while the tylenol lasts for 6 hours. We found that giving the morphine and the tylenol at the exact same time works best because the morphine works for the short term and the tylenol kicks in later and lasts longer. The pain was not that bad.

 

Diaper Rash Treatment

It is very important to have a good diaper rash cream on the butt BEFORE the very FIRST poop. I was obsessive about keeping Stephen’s skin prepared for that very first poop - you just don’t know when it is going to happen. We used a non-alcohol skin prep swab all over his cheeks. (We stopped using the skin prep swabs after the first couple of weeks.) We used ilex in the crack and topped it with a thick layer of triple paste going out about an inch from the crack. We bought the ilex from American Ostomy Supply (800) 858-5858 for $4.85/1.5oz. plus $3 shipping and handling. The product # is CV6987-Y9*. Note: I heard the consistency of the ilex varies a lot from tube to tube depending on it's freshness so buy it from some place that has a good turnover. We bought the triple paste from Summers Laboratory (800) 533-7546 for $26.95/lb. plus $4 shipping and handling. I recommend buying 8-12 tubes of ilex and 1-3 jars of triple paste to start out with. We never had any problem with the ilex sticking to the poop except the one time we didn't top it with triple paste. We used Peri Wash to get it off that time. We never tried anything else so I don't know if something else would have worked for us. Stephen never had bad diaper rash. We did not soak him but I heard that soaking in water with cornstarch works best (as opposed to oatmeal/aveeno, baking soda, etc.). When Stephen got a couple of blisters because we forgot one time to put on the ilex, we put Banana Boat brand Sooth-A-Caine Aloe Vera Gel w/ Lidocaine on under the ilex and used a blow dryer to dry it off. We frequently used the blow dryer to be sure there was no moisture on Stephen’s skin before applying the ilex. Moisture can cause yeast infections to grow. A yeast infection is very red, comes on very quickly, and usually begins with little red bumps. I had a prescription filled for Nystatin and had a tube on hand before the closure - just in case. You can also use Lotrimin which is over-the-counter. I recommend changing the diaper immediately after a poop occurs at least for the first few weeks. Stephen cried or whimpered every time he pooped the first weeks - even in the middle of the night. I understand most kids don’t poop at night but Stephen did many times although just for the first 3-5 days. If Stephen was starting a runny poop that looked like it was going to continue, I would just keep him on the changing table and hold his feet up in the air and wipe the poop off of him as soon as it came out. Sometimes this went on for 10-20 minutes. We did not use baby wipes, we used cotton balls - the large size - soaked in baby oil. (Actually, after a while we switched from pure cotton balls to 100% cotton cosmetic squares.) I had a container of cotton balls pre-soaked w/ oil next to the changing table and in the diaper bag. I also used “dry wipes” which I got from the hospital. They are very similar to the “diaper liners” you can buy at Walmart or Toys R Us. (Gerber’s come in a blue box with about 100 inside.). I would put a dry wipe on top of a clean diaper and when the wipe got dirty, just replace the wipe. This saved me from going through a large number of diapers as I held Stephen’s feet in the air. I never actually diapered Stephen w/ a wipe/liner.

* Other sources are Edgepark (800) 321-0591 which charges $7.59/tube or $6/tube if using a credit card with no charges for tax or shipping.. Other sources are Medcom Tech. 1 800 443-6332 and Parthenon (800) 453-8898.

Note 1: I was so afraid of blistering, bleeding diaper rash that I asked EVERYONE (family, neighbors, coworkers, church mates, list mates, etc.) to pray for Stephen’s skin. God answered and blessed him :)!

Note 2: Many moms have used many different methods for battling diaper rash and yeast infections. See the More Information on Diaper Rash section below for more tips from other moms.

 

Foods to Prevent Diaper Rash

We fed Stephen constipating foods to cut down on the frequent poops - i.e. bananas, applesauce, and rice cereal. I was still nursing 2 out of 4 feedings a day and had enough breast milk frozen for the other 2 feedings a day to last a month. We had heard that breast milk causes less diaper rash than formula. We avoided acidic foods such as tomatoes, kiwi, and citrus fruits. Finally, Stephen had been on antibiotics for many months so we started giving him 1 tsp. of primodophilus (acidophilus for babies) a day about a week before the surgery and continued it until we stopped the antibiotics. We had to buy the primodophilus at a health food/organic grocery store.

 

Incision

The incision area was swollen and bruised but healed quickly - approximately 6 weeks for the swelling and bruised color to improve significantly. It required no special care other than a dry, clean gauze bandage for the first week or two. Our surgeon said it could take 6-12 months for the swelling and incision to heal completely. She said that if an infection were to occur, it is usually w/in the first week. She also said there could be twinges of pain at the incision area for 6-12 months. She compared this to pain women feel after a C-section. So far, we haven't noticed Stephen having any pain in that area at all.  Keeping the incision out of direct sunlight for up to a year after the surgery is thought to minimize scarring.

 

Constipation

Stephen got constipated w/in two weeks. It came on pretty quickly. We treated it with prunes in the morning. We avoided constipating foods. We kept a daily log of Stephen's poops. If he didn’t have at least one big poop a day, we either increased the prunes the next morning or gave him a babylax suppository. For Stephen, the solid glycerine suppositories for infants in the house brands (because they are smaller) cause the least stinging/cramping. However, they take longer to work and don’t work as well as the liquid bulb type of babylax.

 

The Long Term - Stephen’s Story

For Stephen, prunes at breakfast controlled the constipation for months. Then, we started adding butter to his oatmeal in the morning and found he no longer needed the prunes. (I later found out from Kathie G. at Dr. Pena’s office that this was a mistake. It’s best to start a baby on prunes young and then never stop feeding the prunes so that you don’t take a chance that the child will no longer eat prunes when you have to reintroduce them.) At this point, he was having about 5 or 6 poops a day. He was 3 months post closure and 11 months old. Over the next 3 months, he gradually got down to 3 poops a day - sometimes even 2. We were ecstatic thinking this was an excellent sign that he would be continent (he has a 60% chance per Pena)! Until I changed his diaper one day and saw balls in mushy poop. We gave him a babylax that night, but the balls came back for 1 poop a day. The other 2 poops each day were normal. Over the next couple of days, he developed an impaction in his rectum that was a pile of balls stacked on top of each other - we could see it in the x-ray. I should have given him a babylax every day that I saw the balls. I also should have added laxative foods (prunes, juice, nectars). Luckily, the impaction wasn’t big and wasn’t there for more than 2-3 days so we don’t think there was any permanent damage. However, I would recommend taking immediate and continuous action should you see signs of constipation. According to the x-ray, Stephen had a normal amount of poop in his bowels so I don’t think this was a motility problem that had been building up. We had been adding more and more table foods and had just gotten off baby food entirely so it may have been dietary changes that caused the problem. I haven’t been able to get Stephen to drink much so the lack of water from the baby foods may have been a problem. (Note: If I had it to do over again, I would offer Stephen water in various kinds of cups several times a day starting from when he was about 8 or 9 months old.) However, after reverting back to babyfood, the constipation is still severe compared to what it had been. Kathie G. recommends trying laxative foods - like prunes first. We gave Stephen a jar of prunes at breakfast and half a jar at lunch and dinner for several days in a row. He continued to have one poop w/ a ball so we also gave him a babylax. Since all those prunes didn’t do the trick, Kathie didn’t think Stephen would respond to a stool softener and recommended we start giving him Milk of Magnesia (MoM) at night. The MoM worked fine for a couple of weeks but then appeared to be causing severe diaper rash. Stephen’s butt was bleeding and even closure hadn’t done that. So, we switched to sorbitol which we are giving along with prunes twice a day. The sorbitol and prunes twice a day has been working for 3-4 months now.

 

To Avoid Constipation

- Increase Fluid Intake - esp. water (min. of 6-8 glasses/day for adults)

-Eat more fiber (20-35g/day for adults, 30+ for those who suffer from constipation)

-Avoid drugs that cause constipation

From Be Good to Your Gut by Pat Baird, M.A., R.D.

analgesics, antacids (calcium and aluminum), anticholinergics, anticonvulsants, antidepressants, antihypertensives, antiparkinsonian drugs diuretics, iron supplements, MAO inhibitors, opiates, psychoactive drugs

From Prevention Magazine

Calcium supplements, antihistimines, narcotics, antacids w/ Aluminum or calcium, diuretics, sedatives, tricyclic antidepressants, and phenothiazines.

From Karen

Antibiotic Cefzil

From Sue (mom of Emily, mega cystic micro colon)

Digel is an anti-gas medication that contains symethicone and other active ingredients. The other active ingredients are constipating (per Sue’s pediatrician’s experience w/ his patients, it has not been documented). There is a symethicone only version of mylanta that would be better to use.

From Susan (mom to Joey)

A GI doc told me we were sabotaging Joey's bowels by the ditropan we were giving him for his bladder. One of the side-effects of ditropan is constipation. Note: others on the list have experienced this as well.

From Kimberly(Mom to Terran, HD)

One thing to be careful of that I just found out is how motrin can affect the bowel - motrin can slow the bowel but tylenol does not affect it as much.

- Exercise

Do leg movements and exercises several times a day for a minute or so

- Tummy Rub

Perform a clockwise abdominal massage several times a day. Apply some oil to the skin then rub quite firmly, though not too deep, around the outer area of the abdomen, for a minute or so.

 

Signs of Constipation

- Hard balls in poop

- Dark, sticky, toothpaste consistency poop w/ “characteristic” odor

- Frequent small bowel movements (ex. smearing)

- Overflow incontinence (appears to be diarrhea, constant stooling of liquid)

- Passing a decreased amount of feces over a few days

- Not going at all

- Decreased appetite/loss of appetite

- Abdominal pain or cramps (often causing the child to be irritable, babies may cry a lot at night and draw their legs up over their abdomen)

- Nausea and vomiting (usually only if the impaction is really bad)

- May seem to have to urinate more frequently, have dribbling, or recurrent bladder infections

- Lower energy

- The child has bad breath (from the Oops book)

From Jane D. (Mom to Tyler, 5yrs.)

Ty has complained of pain on his spine about the middle of the back - not

towards bottom of the spine - and also complains of tummyache. He has complained of this many times before and we always came up with impactions being the problem.

To Check for Impaction

An impaction can develop in 3-7 days.

- Perform a rectal exam to be sure the rectum is empty (If you don’t have latex free gloves and are in a pinch push the dilator in 4”. If the dilator comes out w/ clay consistency poop on it or if you hit a clay ball, the child is probably impacted.)

- Feel tummy for distension (larger than normal tummy) or a rigid abdomen. Sometimes, a large mass of stool can be felt through the abdominal wall.

- Get an X-ray of the abdomen (A KUB is a simple abdominal X-Ray, flat plate; no dye)

Note: it would be good if you could get your pediatrician or pediatric surgeon to write a standing order for a horizontal flat plate x-ray and give it to you. Then you will have it when you need it and will eliminate hours or days of trying to catch up with the doctor to get the order.

From Jennie (Mum to Julia, HD,2 1/2.nz)

I've also worried about all the x-rays Julia has had. By the time she was 6 months, she'd had at least 25 abdo x-rays. A while ago, I wrote in to a medical questions page in a child care publication and received an answer from a consultant pediatric radiologist at our largest children's hospital. Thought it might be useful to share it: "There is no level of x-ray exposure that would be considered totally risk-free and risk does increase as the number of x-rays increases. But the risk is very small to begin with. Many children have even larger numbers of x-rays over their lifetime than your daughter has had without ill effect. Theoretically, the long-term risks from multiple exposure could include the development of tumors or reproductive dysfunction related to ovarian injury. The chances of these, however, are slight, and there are no documented cases yet that show an increase in human cancer at radiation levels below 10 rad, which, in children, would be hundreds (if not thousands) of plain views of the abdomen. Generally, standard medical x-rays are felt to be "safe", though this is a subjective term. It is probably easiest to estimate the risk by comparing risks taken in other everyday settings. For example, the chance of dying is estimated to increase by one in one million with traveling 75 kilometers in a car, or with smoking one cigarette, or having one x-ray of the chest."

 

Treating Impaction

If an impaction is bad, enemas and medication will only be painful causing cramps around the large mass. Taking a child for an x-ray of his abdomen would help to assess the situation. Then perhaps the doctors could clean him out at the hospital.

Pulse Irrigated Evacuation

From Shirley

I wanted to share some information that I found about PIE* (Pulsed Irrigated Evacuation) with the group. I'm not endorsing it, because we have no personal experience with it. PIE* is a computer controlled system that uses "pulsing tap water through an inflatable, retention cuff speculum within an enclosed system" to "break up and rehydrate even the most difficult impactions." It is latex free and claims to provide "full colon cleansing." They have been successful in getting some insurance companies to pay for it as a "bowel prosthetic device." For example, Medicare defines a permanent, dysfunctional organ as "a condition entitled to a prosthetic device and its supplies." Many insurance companies follow Medicare's definitions and guidelines. PIE* has a special "Certificate of Medical Necessity" you can take to your Dr. to have filled out. For more information, PIE* Medical's phone number is 1(800)863-3150. Their website is http://www.piemed.com

Golytely/Colyte NOT Recommended

From Susan (adult, HIA)

I called Schwartz Pharmaceuticals (1-800-558-5114), who manufacture Colyte. A very helpful company representative said the formula is a mixture of salts which are carefully balanced so that none of the product is absorbed by the body. He said that trying to add or change the flavor is most inadvisable, because the chemical composition would be altered. He also said that the patient should begin having bowel movements within an hour after beginning the regimen of drinking (as opposed to sipping) one glass every 10 minutes. If the bowels aren't moving in 2 hours or so, one should contact the physician before drinking any more of the stuff. A ruptured bowel could be caused by drinking so much of the liquid if there is an impaction. Colyte and similar products (Golytely, etc.) are contraindicated when there is a bowel obstruction. I looked up these products in a nurse's PDR; megacolon is listed as a contraindication. This information from Schwartz makes me glad that I did not use Colyte (which an M.D. had suggested) as a general clean-out/powerful laxative when I believed I had impactions earlier this year.

 

Scar Tissue/Adhesions

Preventing Adhesions

Non-Latex, Non-Powdered Gloves

From Shirley (mom to Chantel, age 9)

In the book, Medicine's Deadly Dust the conclusion was that it is the powder on the surgical gloves that causes the adhesions. The worst offender of course is powdered latex gloves. Non-latex powdered gloves are also a problem because it's been observed that most surgeons don't do the extra ten minute scrub that is required to remove the powder after they don the gloves. A lot of surgeons aren't convinced... Dr. Ehrlich's research showed that many times if the adhesions were biopsied within 3 months of first developing, there was cornstarch powder found in the adhesion itself. Adhesions can still develop for other unknown reasons, but Dr. Ehrlich's work has shown wonderful results in wound healing and lack of adhesions when non-latex, non-powdered gloves are used. Ask whatever surgeon does her surgery to please use non-latex, non-powdered gloves! Many surgeons don't like using them, but they have really improved over the years and with a little effort and help from the OR staff, the surgeon should be able to find some ones he/she likes. (Just a note: some Children's hospitals have even been holding a special day when they have samples of all the manufacturer's non-latex gloves available for the surgeons to try on so they can see what's available and what they may want to switch to).

Scar Tissue Massage Post Surgery

From Caroline (Mom to Michael, 9 mo., VACTERL

I highly recommend ANYONE that has surgery, do scar tissue massage. Please call me if you are interested - (970) 532-2533, (800) 530-6878. Also, there is a technique called Visceral Manipulation. A skilled manual physical therapist can do this technique. This technique helps release internal scar adhesions.

Yes, scar tissue massage is one of the best ways to prevent scar tissue adhesions. It is best to begin scar tissue massage approx. 5 - 8 days after surgery, or when the scab formation has fallen off. There are several different techniques that are beneficial, I will list a few of these below. The instructions that follow are for a tethered cord surgery, but may be used on any scar.

1) The Push & Pull: Place two fingers on top of your child's scar. The fingers should be perpendicular to the scar. Gently push the scar toward his/her side. Your fingers should not slide across the skin, they should move with the scar. USE VERY LIGHT PRESSURE, APPROX. 2-3 OUNCES. When the skin stops moving, continue to hold light pressure on the scar for 1 to 2 minutes. Now pull scar toward opposite side, hold 1-2 minutes. Repeat, lightly pushing and pulling scar up toward the head, and down toward the feet. You will find one direction is more STUCK than another. Spend more time going in the direction that feels stuck.

2. Push & Pull II: Follow directions as above, however gently push and pull scar tissue in a rhythmic manner holding only for a 1/2 second or less in each direction.

3. Skin Plucking: Lightly grasp one end of the scar between your thumb and the side of your first finger. Lift the scar away from the body, separating it from the underlying tissue. Gently move your fingers side to side for 30 seconds. Move fingers to the center of the scar and then to the opposite end of the scar, and repeat.

Signs of Adhesions –Symptoms and Personal Experiences

From Angela (Mom to Marvin, 5 , IA&HD)

When my son was 4 he complained of a tummy ache. I gave him some Pepto and he was fine. I noticed he would complain of a tummy ache about once every 2-3 weeks and then be fine. With a "normal" child we can just give them some MoM or Pepto and call it a day. We have to really listen to our special kids more closely and react a lot differently to things that would seem minor for a "normal" child. Well, when I took him to the hospital I found out he had scar tissue that had looped around in his intestines that had to be removed immediately! No one told me when he was a baby that he could possibly get scar tissue. While we were in the hospital there was a 15 year old girl who had had surgery on her intestines when she was 2 yrs old. She had no -NO- complications for 13 years and then -Boom scar tissue obstruction! In speaking with the docs at that time they told me it's not uncommon to see a 50 yr. old that hasn't had surgery in 48 yrs to come in needing scar tissue removal. We can not be too careful.

 

From Deanna (Mom to Marika: IA,)

Marika also had bowel adhesions. She was ill for about a week prior and I could not convince the local medical clinic that this wasn't the flu (Our family dr. was unavailable at the time). I knew what to look for because of all of the hospital stays: bowel sounds, passing gas, vomiting and fevers. Marika had no bowel sounds or gas, she couldn't keep even a sip of water down, and I can't remember whether she had fevers (although I think she may have). On the seventh day, we were finally able to see our physician who asked me for MY opinion and I expressed my thoughts about bowel obstruction. She immediately sent us for x-rays at the local hospital and Marika and I were in a chopper within about four hours enroute to Children's Hosp. (We live on Vancouver Island and so pediatric emergencies such as this are medi-vaced over to Vancouver.) Marika had surgery at about 7:00 AM the next morning and had a full recovery. Our story is a happy one as she lost no bowel and she recuperated quickly. However, it was extremely frightening as we had never had such an emergency and the mere fact that they sent a helicopter made us realize how seriously they were treating it. Since then, 2 1/2 years ago, we haven't seen anything like it again, and we keep a watchful eye on her bowel sounds and passing of gas. You can listen for bowel sounds simply by putting an ear to the child's belly. Gas, of course is obvious! If you are suspicious and those things stop, see the Dr. right away!

 

From Nova  (Mom to Skyler)

The peritoneal cavity had to be opened up from the front - breast bone to pubic bone - for both my son’s pull-thru and the colostomy closure. It was this 4 year old scar tissue (also known as adhesions) that formed a bridge around a segment of the small intestine. Over time and activity, an extra loop of bowel tried to manipulate its way thru this scar "bridge" and cut off the blood to the rest of that 48" segment. One evening last November he started to complain that his belly hurt. I gave him another enema thru his Malone thinking he was impacted. Nothing came out which was VERY misleading. The Malone cleans out the large intestine and the small intestine was the problem. His body absorbed the whole enema through his large intestine! Then he projectile vomited his dinner. No fever yet. But his pain was intense. I called Pena at home. He said he has a bowel obstruction take him to the hospital. I took him and the residents didn't treat as an obstruction because they just had two flu cases come in two hours earlier. They thought it was the flu. His pain intensified and came about every 7-10 minutes like a woman in labor. He was screaming the whole night, but never spiked a fever. odd. What was confusing to me is that I never had a correct understanding of the word "bowel obstruction". I always thought it meant that his intestines would be obstructed by a "piece of b.m.". Not necessarily. The intestines were being obstructed by scar tissue! 48" were strangled - nothing going in, nothing coming out. They went bacterial, got infected, died, and leached over the rest of his insides. When he was opened up at 1 p.m. the next day, they suctioned 750cc's of prune juice colored fluid from the cavity. This was infected fluid that spilled from the leaching segment. He nearly went into shock. They removed the dead section, hosed him off with saline, closed him up, bombarded him with antibiotics, and hoped for the best. THIS COULD HAPPEN TO ANYONE WHO HAS HAD ABDOMINAL SURGERY! It could happen when he was age 4 or 84. It could happen again. Scar tissue is a nasty thing - especially in the abdominal cavity. It has no blueprint like other organs and grows in whatever pattern suits it. This is very important for others who have had abdominal cuts to be aware of.

 

From Jane D. (Mom to Tyler)

Nova, After this happened to Skyler last fall, then Allie weeks later, and since Ty has had 9 abdominal surgeries, we became very concerned. We've been to the ER with obstructions(luckily it was stool) and told it's the flu and sent home, only to return to admit him for major cleanouts and dehydration from all the vomiting. We talked to his dr. in Jan. about our concerns of this happening to Ty, that ER drs. could waste precious time since they don't know his history and don't want anything like this to happen to him.  She was very kind and understanding and gave us a letter to carry with us at all times in hopes to avoid what you went through. It gives a brief history and tells that Ty is at higher risk for recurrent intestinal obstructions, to treat as that and contact her for more information. I especially wanted this letter since we recently went to Florida, knowing if anything happened, Dr. C. was too far away and of no help to us.

From Nova  (Mom to Skyler)

I think it's a great idea to have a letter from your doctor about an increased risk of intestinal obstructions due to the peritoneal adhesions. I don't know if a letter would have helped in our case. The residents at my ER even got word from Pena at 2am in the morning to treat it that way, yet, they were still too conservative.

From Dawn (Mom to Carissa)

Carissa had to have emergency surgery for adhesions a short time after her colostomy placement. Symptoms were a distended, hard tummy and vomiting bile. Unfortunately, Carissa had to have surgery again at 8mos. for adhesions. This time the only symptoms were not wanting to eat or drink and crying, crankiness. She did not vomit. Her abdomen was soft. It took approx. 4 weeks for the doctors to find it meanwhile the baby was losing weight because she wouldn’t eat. It was finally diagnosed after 3 flat plate x-rays and an upper GI.

From Cathy (Mom to Emily, Julia and Mary)

After surgery, my daughter was extremely uncomfortable and irritable. She did not want to move around much or eat. They took extra X-rays, but could find nothing. I felt that something was wrong, but I had her released from the hospital and took her home anyway. Within days she was worse, and when she started vomiting I called Dr. Pena, and we agreed that she should go back to the hospital immediately. As it turned out, she did have an adhesion that was not that obvious initially, and Dr. Pena even hoped that it might correct itself with a liquid diet for several days. Of course we did not get that lucky, and she had to have surgery to correct it. But the moral of the story is... Mother or Father knows best. Even though nothing could be seen on the X-ray films initially, I knew that something was wrong. Mary had several surgeries before this and had never had such a slow, almost non-existent recovery.

More on Diaper Rash

Other Causes

From: Susan

In the Medical Advisor book, they say that if a rash persists, "sometimes it's an indication that a secondary skin condition has developed." They mention impetigo, a strep or staph infection, seborrheic dermatitis, and yeast infections. They also suggest the possibility of a local reaction to a particular lotion, laundry detergent, or soap. "Eczema can occur as a diaper rash in reaction to a foods or other allergens. When baby powder or talc comes into contact with broken skin, it can cause an inflammatory reaction called granulation. Do not use cornstarch if your baby has a yeast infection - yeast thrives on cornstarch".

 

From Surgery of Infants and Children

Rectum and Anus Chapter by Paidas and Pena, pg. 1355

A typical paste used for the diaper rash consists of vitamin A and D ointment, aloe, neomycin, Desitin, and Mylanta. Nystatin is added if the rash is the result of yeast.

 

Recommended and Used By Several or More PTN Moms

Note: See the article Inventive Solutions on the PTN Website for a list of alternative treatments for diaper rash. Ilex seems to be the most popular followed by Criticaid.

 

Calmoseptine

From Connie (Mom to ?, spina bifida)I hope it does help. The residents at my ER even got word from Pena at

2am in the morning to treat it that way, yet, they were still too

conservative. I don't know if a letter would have helped in our case. I

hope though that families who walk in to the ER with this problem are

able to communicate to the staff that abdominal adhesions are a higher

risk with these kids. Hopefully they will look close at the belly scars

and make the connection.

There is a web site with info on Calmoseptine and a place to request a free sample at: http://www.calmoseptineointment.com.

 

Bag Balm

Note: Some moms raved about this and some said it didn’t work as good as other things

From Roseann (mother of Carl, IA, age 4)

You can get Bag Balm at any major pet store, e.g., PetsMart, Petco, etc. I was quite concerned about using it because it contains 8-hydroxyquinoline, a chemical I've used in the lab, but I can't find anything in the literature to really alarm me. And it works great! That has been our remedy of last resort for quite some time now.

Note: Vets, Rite Aid, Walmart (in the pet dept), Kmart, Payless are also places to buy bag balm.

You can also mail order from PBS Livestock Health -- 1-800-321-0235. Their prices are supposedly good.

From Amy (mom to Bea, 2, cloaca, pullthru 1/20)

The most affordable source for Bag Balm is your local vet supply store or tack store. If you can't find it, let me know and I'll get you the ## of a Vet Supply store here in Ohio that does mail order.

 

Triple Care Wash

Paula (Mom to Keegan)

Try Smith and Wesson Triple Care Wash for cleansing the area. It maintains the bodies oils instead of stripping them; wipes are really bad for my son. This product has made the difference for us, and keeping the area really dry (i.e. using cornstarch (or flour roasted in an iron skillet) before the barrier.

Karaya Powder for Healing

From Mindy (Mom to Zack)

I use Karaya powder on Zack occasionally and it is pretty good -- though Ilex protects better. I like the Karaya for loose stool since it causes the stool to stick together and it makes it easier to clean since the stool does not stick to the butt like it does with Ilex. I get Karaya from the medical supply stores that I used for ostomy supplies. It is usually kept in the ostomy section and costs $9.60/4oz.

From Cathy (mom to andrew, 10)

You might try a mixture of Karaya paste and Desitin on the irritated area. My son had a colostomy at birth and then again 6 years later. We STILL use that paste. Clears up the area VERY fast!

From Joan (mom of Kim, now age 30, total colon Hirschsprung's disease)

I had a MAJOR problem with my daughter, especially when she had her pull-through because her little bottom was so excoriated that it was bleeding. After much experimentation, I discovered that karaya powder mixed with Desitin or Perianal or other diaper cremes worked WONDERS for her. I mixed it to as thick a consistency as I could get and still spread it where it needed to be spread. Her skin cleared up overnight. I continue to this day to give it to parents with babies with diaper rashes. It will not work on bacterial infections or on fungus (usually) but works great on too much acid coming out of the wrong place.

 

Flour Mixture For Bloody Bottoms

From Connie (Mom to ?, spina bifida)

At 15 months, my daughter was hospitalized for colitis, and obviously, her bottom was raw and nothing the doctor was prescribing was helping. I called crying to my grandmother, and she told me what her mom used to do. And it truly was a medical miracle. I swear by the following treatment for a raw bottom: Put flour in a CAST IRON skillet, heat it until it turns brown, let it cool off and apply liberally. I just put the powder on her bottom, and put some loose powder in her diaper. Works like a charm.

From: Michele

I just have to throw in my 2 cents worth on a "cure" for diaper rash. This worked on all three of my kids, especially when they had bleeding, broken skin. I have no idea why it works, just that it does. Take some regular flour, toss it in a clean, dry skillet (does not have to be cast iron) and stir it until it's lightly browned. Set it aside to cool, then sprinkle on the affected butt lightly.

From Karen

We tried the browned flour on Stephen and it did work really well. So well, in fact, that whenever he was starting to get a little loose, I would throw a couple of tablespoons in his diaper over the barrier cream. The flour absorbed the liquid and kept it from irritating his skin.

 

Mixes w/ Nystatin for Yeast

Criticaid mixed with Nystatin powder

From Dawn (Mom to Courtney)

The best thing we have found, and we have tried so many, is the following formula for a very good cream Equal parts:

            Nystatin

            Stomahesive

            Zinc Oxide

You will have to get a prescription for this and your pharmacy will have to specially make this but it works great!!!

From Monique (Mom to Sami, 2, HD)

That is exactly what I use on Sami, but I make it up myself. I just have a prescription for the Nystatin cream.

            1 oz. tube Nystatin cream (strength is 100,000 units per gram)

            1 oz. tube of zinc oxide (20% zinc oxide) (Monique pays $14.25/LB, .89/oz)

Stomahesive powder - add until it gets a little thick. I just add enough of the stomahesive powder to make the paste a consistency of creamy peanut butter (maybe little thicker).

Just like Dawn, I feel like we've tried everything and this is what worked best for us.

Note: zinc oxide cream is only 20% zinc oxide, while Desitin is 40% zinc oxide

From Laura (mom to Torin)

Riley’s Butt Cream

Nystatin Powder          15 grams

Nystatin Cream           15 grams

Zinc Oxide Ointment 20%  30 grams

A&D Ointment            30 grams

Dibucaine Ointment 1%     7.5 grams

Tincture of Benzoin        3 drops

I called the pharmacy (Riley Children's Hospital, Indianapolis, IN) and their number is (317)274-2335. She said that a prescription is needed because a couple of the ingredients are prescription only but to give this to your doctor and he/she can write a prescription for it and if there are any questions to call the pharmacy they would help. She also said that outside of their pharmacy the cost is ranging from $50 to $100 for a small size jar.

 

Other Yeast Remedies

From Roxanne (Mom to Remi, 7 1/2 mos, IA)

Thanks to whomever posted about Miconazole 2% for yeast infections. I had been using a cortisone/nystatin mixture with no success. The Miconazole is really helping.

 

Nupercanial Ointment for Pain

From Doris (Nathan's Grammy, 2.3 yrs , HIA)

Have you tried Nupercanial Ointment for the painful "diaper Rash"? It should give you some relief. It is an over the counter medication that should be put on under regular diaper creams.

From Sandy (mom to Nathan ,2.4, HIA.net)

For the most part Nathan’s raw bottom was do to food allergies and we have seen a great improvement since he has not eaten eggs, peanuts, or citrus. We currently use lantiseptic and occasionally nupercanial when his butt hurts him.

 

Recommended by One PTN Mom

Diaprex Ointment

From Robin (Mom to Timothy, 3, HIA), PTN newsletter Vol. 6, #1

Diaprex ointment has been a miracle for us. It costs $29.95 including shipping for a 1lb jar. It can be purchased from Diaprex Marketing (317) 573-0161.

 

Mix with Corn Starch

Ginger (mom), Jon(14yr.) Pseudoobstruction with NID

I have a 14 yr. old who has tried many diaper rash products over the years to no avail. The following recipe was given to me by our surgeon and my son says it's the best... works overnight..his skin can go from raw to clear, takes away the pain, burning, and itching

Mix and store in small plastic jar:

            1 part zinc oxide

            2 parts corn starch

            1 part Vaseline

            2 parts stomahesive

It makes a thick paste and I think you will find that it works great.

 

Cortisone Cream

From (Karen, mom to Katie 6 1/2 months w/ HD)

I tried a whole bunch of butt creams on Katie after her pullthru in January but the only thing that cleared her up was the cortisone cream.

 

Silvadene

Miracle cream for burns.

From Shirley (mom to Chantel 6, cloaca, etc.)

One interesting thing I read about Silvadene is that it not only knocks out many gram-negative and gram-positive bacteria, but also yeast.

 

Not Recommended

From Susan:(Adult, IA)

Gold Bond Medicated Powder has menthol as one of the active ingredients. I tried it again just now, wondering what it would be like when I'm only a little sore. It's burning even with leftover Balmex underneath. That's my final experiment with Gold Bond!

 

Baby Wipes

Many people continue using baby wipes instead of toilet paper as their children become potty trained. The wipes, esp. Chubs brand, seem to be gentler on the skin. 100% cotton pads, 2" circular, are also gentle to clean with.

Homemade Wipes

From Kimberly (Mom to Terran)

One thing we have done is make baby wipes with

            2 tsp. of mineral oil

            1 tsp. baking soda

            and viva paper towels

in an old baby wipe container we put the water mixed with the oil and baking soda and let the paper towels soak it up. Works well and is loads cheaper than wipes

From Roxanne (Mom to Remi, 9mths)

            I buy the Costco blue shop paper towels (the thicker the paper towel, the better) I turn the roll on its side & cut in half, This will look like to giant rolls of toilet paper. I place each half in a gallon size baggie. Mix in a bowl 4 cups water, 2 Tbl baby bath, 2 Tbl baby oil, 2 Tbl liquid glycerin... Pour half of each mixture over roll in each baggie. Turn baggie over in app 1/2 an hour...... (If you use a thinner towel, use less water)

            To use: I purchase a big container of inexpensive wipes that pull up through the top, Throw away store wipes. Take 1 roll out of baggie. Pull out & throw away cardboard center. Place roll into container & pull up center wipe through lid hole. Each time you use one they will keep pulling up just like the store kind, but, no irritation to the skin.

Exposure of Skin to Air

From Laurie (Mom to Carey, age 9-high IA, cloaca, etc.)

After Carey’s closure, she developed the famous rash, so we camped out in the backyard every day. I just kept a shirt on her, so that her bottom was exposed to the sun and air. I used a peri bottle filled with water to clean off every bowel movement and she air dried. Her rash cleared up a lot faster than if we had kept her in diapers. The stool didn’t stay on her skin and there was no secondary fungal rash, either.

 

Fissures

What a Fissure Is

From UVA Web Site by Stephen M. Borowitz

A severe case of diaper rash may cause fissures to develop. Fissures are small rips or tears at the anal opening. While anal fissures are not dangerous, they can be extremely painful and are often associated with some bleeding with bowel movements. The tears or rips tend to occur in little folds of skin at the anal opening. They may take a long time to heal.

Treating a Fissure

From Kim (Adult)

Q - Are they always visible externally?

A - I would assume so as my doctor's have always been able to see (or feel) them upon exam; however, the muscle has always been too much in spasm to do a full exam.

Q - Is there anything to do to encourage quicker healing?

A - Less activity (the less frequent bowel movements the better and I find Vitamin E taken internally and used topically speed healing)

Q - How do you stop the muscle from spasming?

A - They FINALLY put a drug on the market - a nitroglycerine mixture in a cream to stick up there. I use it every 6 hours (applied with Q-tip, which barely fits up there so you can imagine how bad spasm is) and it relaxes the muscle - sometimes so much it can be embarrassing if I leave the restroom too soon. It is supposedly site-specific, but it has always given me a vascular headache upon application. The headache doesn't last long (10 minutes) - and is minor compared to the pain it replaces. If you need to suggest it to a doctor or something, let me know and I'll read you my exact prescription.

Developmental Issues

Dealing with Fear of Doctors

From Karen B. (Head of PTN, Mom to Sammy, 4, cloaca)

Sammy used to be very upset at all of her doctor appointments, to the point where she would just cry hysterically the entire time, making it difficult for the exam itself, and any discussions we were to have with the doctor. It has gotten so much better lately, though. She hasn't had a surgery for 2 years now, and I think her fear of what might happen has become easier to reason with. We always discuss all of the scenarios of what might happen and what we know will happen at the appointments before we go. I think that having a long period where the appointments have been mostly non-invasive has really helped. I do really dread having to go through possible surgeries at this point, and having to explain them to her. We just try to be totally honest and tell her what will happen and that we will be there for her and it will be over soon!

 

Infant to Preschool Developmental Help

From Elizabeth (Mom to Noah)

There are programs nationwide for infants to age three with delays, or that are at risk for delays. You may want to call a social worker at your hospital, or your local school district. The program my son went to offered speech, feeding, physical therapy, occupational therapy, and exercises to increase fine and gross motor control. They also did other things like hold parent groups, check ears for fluid monthly, etc. Any advantage we can give our kids to help them reach their potential is worthwhile. You may want to check it out. Sometimes kids don't do things as early as others because there are peaks and valleys in their development, sometimes they have had interference, such as from surgery or an injury, etc. Sometimes there are physical problems that doctors have overlooked or underestimated. In a weekly program, like the one I described, qualified specialists will get to know you and your child and will let you know how to help him or her best, help you see their progress, etc. It also helps to be around other parents and children in similar situations. Eventually, with a lot of help on the homefront, our kids even out and/or learn to adjust to their weaknesses and strengths. We know our children best, sometimes we need to learn the skills to help them best.

From Bonnie  (mom to Amy, 8 yrs, VATER/Tethered Cord/Fecally Incontinent)

You didn't mention if your daughter is in any type of early intervention (physical or occupational therapy) program for her delays. Amy also experienced delays (though not in language) which we attribute to being premature, having several surgeries in her early life and all that goes along with being a special baby. She did her early intervention at the Children's Hospital and at the Cerebral Palsy Center. The CP center was the best since they have a team approach which included PT, OT, nutrition, and also had a staff social worker and nurse. You really should check with the center that serves your area. Amy stayed in their program until she was 3 - early intervention then preschool where she was considered a reverse mainstream and medically fragile. They were wonderful for her and for me - the support I got was so beneficial. They are also set up for those families that may not have medical insurance coverage for early intervention - they will charge what your insurance will cover and the rest in covered by their fund raisers (the annual telethon, etc.).

From Mici (mom to Kelsey, cloacal exstrophy, amputee etc.)

I saw your post about getting your little one PT and the insurance company not wanting to pay for it. Have you tried early intervention? I don’t know where you live but Kelsey has been in the early intervention program since she was 3 months old. This is a federally funded program and if your insurance won't cover it, the gov't is supposed to pick it up. My insurance covers Kelsey's PT, Ot, and speech, but not the nutritionist that works with us. The early intervention program covers her bills. She is even in a playgroup that they cover. You can either get a referral from your doctor or make the referral yourself. Call your local health dept. and ask who you can talk to about this. Once they reach 3 they are covered under the school dist. then you get into a diff. standard. They need to do an eval and cannot tell you over the phone whether you qualify or not.

From: Cathy (Mom to Andrew, HIA)

Andrew didn't say a word until he was almost 2yrs old. We were getting worried so we had him tested. He was delayed in all areas. I contacted the school system..in Carroll County MD..they put in a program..and he went to it for 3 years. It was for delayed kids..part of the Special Ed. program it did wonders for him. He just started 4th grade and is now on the other end of spectrum..he's in gifted program !!! Don't be discouraged..I think our kids go through SOOO much that they just get a bit behind. They deal with pain and strangers and so much.. I don't think its that surprising if you really stop and think about it..

 

From: Dee

I had a similar experience to Cathy (andrew). Steven said virtually nothing and after 2 brain stem hearing tests, was deemed profoundly deaf and off we went with our signing manual. As it turns out, Steven's hearing is fine but he still did not say much of anything until after 3 years. His speech is still a problem (he is almost 9) but getting better all the time. Conversely, he is a math wiz and extremely coordinated! I honestly think that some of these kids spent more time taking in their environment and processing information, instead of manipulating their environment. Steven is by far my most observant child!! He remembers everything he sees, he would be great at the scene of a crime!! Once he started to catch up, (which I thought would never happen) it has been absolutely amazing. Last year,(2nd grade) was the turning point. He went >from a grade behind in reading to a bit ahead, this year he is a grade or 2 ahead!! I was floored!! Hang in there!!

From Laura (mom to Torin, 21 months, HIA/VACTREL.com)

If you go to www. familyvillage.com, click on Community Resources, then click on Regional Resources, then your state there is a list of resources and phone numbers that may help you find resources for early intervention.

 

Day Care/Pre-K Public School

Admittance Laws

From Elizabeth (Mom to Noah)

Date: Thu, 29 May 1997

I was informed by a legal advocate that no daycare has the option of turning us/anyone down unless they can prove that they are full or can document that it would be too considerable a hardship to comply with accommodations a special needs child would require. There is NO licensing regulation that says a child care worker CAN NOT change a diaper. He said if I would like to sue daycares that have told me they would not/could not help us, he would be more than willing. And he said if not, we could always get our kicks shaking them up.

I caved in and put Noah back in pre-k with the public school, he will have a new teacher, in a school with a nurse. There he will be with mild to moderate special needs kids. They will work on his speech, behavioral issues, and be able to handle his medical needs. Plus, they will pick him up and bring him home.

Sudden Series of Accidents

From Kathy (mom to Aaron, 5, HIA)

You wrote, "She started camp and has had accident after accident." My son had a similar situation 2 years ago when he was 3. What I found out was happening was that he was eating lot of foods that he could not tolerate. (Fruit, too much juice, candy from other kids, etc.) Also, he had gone to preschool there the semester before, and had no accidents, but had new teachers for the summer. It turned out that he did not like one of them, so he had accidents because of the situation also. This stupid woman kept sending Aaron to the bathroom all the time. Well, like any kid would do he rebelled and would hold it, and of course have an accident later. Aaron was not articulate at telling me what was going on, or even what he had eaten. The situation got better after I told Aaron to avoid the teacher. We also had a lot of conversations with the teacher herself. (She was convinced it was a psychological problem, not physical.) We educated her, and she avoided Aaron also.

 

Kindergarten Testing for Public Schools in CA

A developmental readiness test by Barbara Ball, M.S. school psychologist. out of Camarillo, Ca.

Gross Motor Skills - hops, two hops on one foot and then the other, stands on one foot momentarily and then the other, stands on one foot for five seconds and then the other, walks forward heel-to-toe, then toe-to-heel, for four steps, stands on one foot momentarily with eyes closed and then the other.

Visual-Motor Skills - copies straight line, circle, plus sign, square, triangle

Visual Discrimination- uppercase letters: visually discriminates shapes circle, square, oval, hexagon, half circle , the letters O I P V AND X

Color Recognition 10 colors

Body Parts - chin, fingernails, heels, ankles, jaw, shoulders, elbows, hips, wrists, and waist

Numeral Comprehension - matches quantity with numerals; 1-5

Speech - speech is understandable, speaks in complete sentences

Knows address, birth date (month and day)

Knows his first, middle, and last name, address and phone number, age, and birthdate

 

Elementary School Issues

IEPs/Legal Rights for Public Education

Federal Laws on IEPs and Rehabilitation

IEP Website

The EDLAW web site: http://www.access.digex.net/~edlawinc/

has the following:

            Full text IDEA - Individual's with Disabilities Education Act

            The Dept. of Education’s Question and Answers on IEPs

            Section 504 of the Rehabilitation Act

            An ADA Self Evaluation Guide for Elementary and Secondary Schools

            Links to Other Legal Information Sources Note: My understanding is that if your child requires an aide, federal funds are available to the school to hire one.

From PTN Article - Our Children and School by Kim Casola

When you meet with your child’s teacher, nurse, and principal prior to the start of the school year, bring a packet of information with you. Let these educators know that you expect this issue to be private. To discuss anything outside the meeting with anyone else would be a breach of the child’s confidentiality which is protected by law. There are two federal laws to protect the child with special needs - The Individuals with Disabilities Act (IDEA) and the Rehabilitation Act. These laws entitle every child in the public school system to have a free and appropriate public education, regardless of need in the least restrictive environment. If you don’t receive support, contact your local advocacy group. For more information, call Advocates for Children (718) 729-8866.

From Starting the School Year Off Right by Darla Nelson-Metzger

Lack of availability of services or lack of sufficient funds may not be used by school personnel to deny or eliminate needed services from your child’s IEP. All services must be provided at no cost to you. The school may ask you to use your private insurance to pay for some services, i.e. speech, physical and occupational therapies. You do not have to do this. Consider the longterm effects, such as lifetime limits on coverage before making this decision.

You may withdraw your consent for any special education action at any time.

 

Implementing IEPs

Bring a large, framed picture of your child to put on the desk during the IEP meeting so that everyone knows who the meeting is about. If you are having trouble getting help from the school staff, if your child has a physical or occupational therapist, this person may know who you should speak with at the school to get results.

From Shirley (Mom to Chantel, age 6, cloaca, Caleb)

I have a lot of experience dealing with school districts and accommodation. Does your child have an IEP (individualized education plan)? If so, you can call a new IEP meeting and have more specific instructions written in it regarding your son's ileostomy and care. You will probably also want to ask for the IEP to state that Patrick be provided with a teaching assistant who is trained in the care of his ileostomy. You can even spell out who trains the assistant in case you'd like an ET nurse to accompany in the training--nothing like having a professional along to back you up in what you say. The advantage of the IEP is that it is a legally binding contract between you and the school district. If they don't fulfill their end by providing the services written in the IEP, you immediately file a compliance complaint with the superintendent of schools, and/or the special education department for your state. This will also save having to worry about "being diplomatic" as it's all spelled out in black and white. I just called another IEP meeting that was held last Monday regarding services my daughter Chantel wasn't receiving. I did choose to go that route although I could have gone ahead and filed a compliance complaint. I'd like to say that everything went smoothly, but it didn't. It is very emotional when it's OUR CHILD involved. But when I was able to point out to them things that were specifically written in Chantel's IEP, they couldn't argue with it. Children's educational rights are very dear to my heart, and I've done a lot of reading up on them and have experienced a lot first hand.

From Cathy  (mom to Andrew)

When Andrew started school, I went and met with the teacher, nurse and Principal a few weeks before school started. We did an IEP, and had the 504 meetings. I also had some information about his problem (old newsletters, etc....) which I copied and offered to them to read. I was very upfront about my concerns and expectations. The school may try and tell you different but they are OBLIGATED to make things as normal as possible for your child. At first they wanted to place Andrew is "special ed" because they felt he would be more comfortable. That was a bit of a battle, because he wasn't behind academically or socially just had these medical problems. I started using the word discrimination and it was agreed to make a few small accommodations for Andrew. He is almost done with 3rd grade now, has missed a lot of school over the past few years but is at top of his class, happy as can be.

From Barney (Dad to Alex)

The IEP is an excellent beginning. The difficult part is to be diplomatic at your school but at the same time to be almost belligerent elsewhere. I would hope that you have a lawyer (even though I detest them, lawyers in this instance provide an excellent vehicle). If you do not have a lawyer, the local bar should be able to refer you to one who will take your case without cost to you and who has experience in these matters. Have the lawyer contact the school systems relevant official and "DEMAND" immediate, continual appropriate medical care. Your child has a legal right, regardless of the state you live in, to the same education a non-handicapped child is receiving. For a long time we were opposed to letting Alex be labeled but now we realize that sometimes those labels provide you the opportunity to get additional resources for your child. Every child has a right to an education. It is much cheaper for the school system to provide additional resources in a mainstreaming school than to send a child to a private school designed to provide special education resources. You probably need to sit down and talk with the principal of the school and explain that your child needs pt, ot, and speech therapy, but that he can function in a mainstreaming environment without being disruptive. If the school system does not become supportive and cooperative immediately, I am sure you can find a lawyer who specializes in special ed cases. Hiring a lawyer is not a move to get any extra money for you or the child merely a means to get the services to which the child is entitled.

From Suzin

We bring a tape recorder to our IEP's. It keeps everyone on their toes!!!!

This is a website from a mom whose child has a different type of birth defect but it is still helpful..

http://www.geocities.com/HotSprings/Spa/6889/SNTips.htm

From DM (Mom to Ian 8.5, HIA)

When Ian was ready to begin school, I met with his teacher and the principal, and laid out in detail his situation re accidents, an action plan for handling them, behaviors I would accept from the teacher, behaviors I wouldn't accept from the teacher, and communication methods I wished to see in place for evaluating this system and Ian's progress. I found initial blank staring and confused questions about why this child could be stool-incontinent at this age. I found I had to get them over their thinking that he could somehow control his stool, and was just being lazy in not doing so. I also did a lot of work in getting the child worker/assistant and the child she was hired to assist in the same class as Ian, and in enlisting her help for Ian too. My final effort was to outline which situations should be handled in the class bathroom (i.e.- smaller soilings) and which things should be communicated to myself or my husband (i.e.- large obvious soilings or any problems Ian himself felt he needed to call about).

 

Tips for Starting School

Note: Approaching the school personnel in April is recommended by some moms as school staff are very busy in May.

From PTN Article: - A Partnership: Parent, Teacher, and School by Sheila Levitt Estrin (2nd grade teacher, adult, IA, Pena patient)

The parents must have a very positive, realistic attitude. The child will sense the parent’s apprehension. In the spring, before entering school in September, the parents should meet with the principal to apprise him of the child’s needs. The proper choice of teacher is key to your child’s success and comfort in school. (The principal knows the teachers and might decide your child’s problem would be better handled by one teacher over another). The principal, teacher, and nurse should be part of a team working for your child’s success. The child should meet this team and be shown where the nurse’s office is located. He should know he will be allowed to use the bathroom whenever necessary and that an extra change of clothes is in the nurse’s office. It is important to stress that you do not want your child treated differently than others. The less attention paid to the problem the better.

From Jeana (mommy of Grayson - 21 mos., VACTERL)

As a former kindergarten teacher, I have been reading with interest all the posts about your babies starting school. I just want to share a little bit that may help alleviate some fears. As a general rule, children do not form prejudices before age 7. I really found this to be true - not that they can't be mean - but they are typically accepting and can even be protective of their peers if properly guided. As the kids age, you see more of the teasing and such. But hopefully since you are getting your little ones into a school setting now, they'll begin to form friendships that will help them through any tough times in the future! I hope

this will show that maybe you won't have teasing to face for a couple of years!

 

Dealing with Accidents at School

From Bonnie  (Mom to Amy, VATER)

When Amy started kindergarten we met with the principal, the school counselor and her teacher before school started. We worked together to find the most appropriate way for Amy to deal with accidents (a method we still use). In kindergarten we were fortunate that the bathroom was in her class. I fixed a box of supplies in a plastic storage box that was kept in the bathroom for her. She has extra pull-ups, wipes and bags for disposing the used/dirty pull-up. I got the bags designed for throwing away diapers - they are scented and allowed her to dispose of the dirty pull-up without odor or anyone knowing what she was throwing away. I kept a check on the box regularly and would refill as necessary - keep a check on the wipes, they will dry out when not needed very often. Now that she uses a bathroom down the hall from her class we have moved her things to a shelf in the office. That way she doesn't have to go back into her classroom should she need to change - she is free to just go and get what she needs when she needs it.

Note: See also the Hiding Accidents section Under Supplies Under Laxatives

From Cathy (mom to Andrew)

Andrew is now in 4th grade and has had a colostomy for almost 4 years. We keep a well supplied box in the nurses station and he goes up to the nurses office when he needs to deal with something. That way he has privacy yet an adult around if he needs help. Andrew has a signal with the teacher so she knows if he needs to leave the room suddenly. It’s not a big deal and usually no one even notices.

From the Oops Book

Clothing used at school, including all spares, should all be the same. Otherwise, other children will comment if the child suddenly appears in different clothing during the day. The child must be able to change his outer pants if he has soiled. Even though the poop didn’t reach his outer pants, the smell will do so.

 

Dealing with Teasing at School

Advice from Dr. Pena’s Office

From Management of Anorectal Malformations by Kathie Guardina, PTN Newsletter, vol. 2, #3

We do not recommend sending your child to school in diapers while the other children are in underpants. If necessary, we encourage keeping your child back for one year on home tutoring or until your child has been clean for 24 hours.

From The Philosophy Behind The Bowel Management Program at Schneider Children’s Hospital by Dr. Pena, PTN Newsletter Vol. 5, #2

We emphasize that our patients must wear normal underwear when socializing with other children of the same age who are wearing normal underwear.

Experiences of PTL Kids

Explaining Medical Problems to Classmates
From Bonnie  (Mom to Amy, VATER)

My daughter, Amy, is 8 years old and is now in the second grade. She is incontinent and we are on an enema routine. We have always been fairly open with Amy's friends about her condition. Of course, the children her age here in our neighborhood and her cousins all know that she has been the hospital a lot for surgery when she was younger and are all very accepting about her condition. Last year we faced the question of how much to tell her friends at school. Amy was wearing pull-ups then and some of the girls in her class were aware of her incontinence since she had been at their houses to play or spend the night. We always tell the Mom's of her friends about Amy's condition ahead of time and let them explain it to their child so that questions were unnecessary when Amy got there. Some of them also knew that Amy kept a box of supplies at school should she have an accident during the days. But when it came time to take her our of class for 2 weeks to go to New York to see Dr. Pena and his staff for bowel management we decided to go ahead and tell all the children about her incontinence. I went to the class and explained to them that Amy suffers from a medical problem and that was why she doesn't know when she needs to have a BM. I briefly and simply went over her medical history and explained that we were going to see another doctor to try and make things better for her. I have found that all the children were and are very caring and accepting of Amy's condition. They asked very good questions and were really concerned. When I spoke to Amy's class I explained that her incontinence is a physical disability in the same way as a child who is blind, deaf or otherwise physically challenged in a way that is easy to see. They all agreed that they would not tease one of those children and that it would not be fair to tease Amy. Of course, age differences dictate what is appropriate and what the other children can understand. But we've never had a problem and Amy has never had a child be cruel to her. Maybe teasing ends when you give the children a chance to understand. By the way - it was Amy's idea for me to talk to her class. It seemed a relief for it to be "out in the open". We've struggled to help Amy feel good about herself and it just made sense to me that we needed to practice what we were preaching to her - - if her incontinence was something that she should not be ashamed of then why hide it. I can't say that I got a 100% positive reaction from her teacher when I first approached her about it. She was concerned that it was too private an issue to discuss with the class. But our position has always been that Amy's condition is not something that she should be ashamed about so we were uncomfortable for it to be handled as if it was the big, bad secret. In my opinion, it is helpful for Amy to not be ashamed about something she can't control.

From a later post

I started by getting the children to tell me the things about themselves and their classmates that are the same and they ways they all are different. I asked them to tell me how they feel about a child who is disabled - blind, deaf or who required a wheelchair. We talked about the children they know who wear glasses. Would you tease them? How would you feel if someone made fun of you? Then we talked about being born with medical problems - and that sometimes the doctors can't "fix" everything. I then explained to them that Amy does not know when she needs to have a bowel movement. The children were very compassionate and NEVER teased her in any way.

From Cindy (Mom to Alex

Our son Alex is 9 yrs old and has gone through his share of teasing. When he was younger, I talked to the class, but with the mobility of today's families, there always seemed to be someone new entering the mix. I also found that as he got older, the children were less responsive to this tactic, as they had become more political, dividing up into groups, etc. Also, Alex didn't want the other kids to know. To make a long story short, things got much better for Alex in the 3rd grade when he changed schools. He was already on a bowel management program and also had started intermittent catheterization to stay dry. The school nurse has been very helpful with the cathing, for all anyone knows Alex just goes to her office to take medication. No one thinks anything of this because so many kids are on some sort of medication. The worst part of the whole experience has been that it has changed Alex's personality. It has made him more defensive and less friendly. This has been heartbreaking as he was the kind of child who could light up the room with his smile when he was little. I hope that as time goes by, this last lingering effect will diminish. In your daughter's case, alot of this can be avoided by getting her either potty trained or on bowel management at a younger age (Alex was 7).

From Scott

I'm the dad of a now 8 year old daughter in the 3rd grade. She has had problems and surgeries from the age of aprox 16 months. I wanted to get all of the surgeries 'wrapped up' before she hit kindergarten, but that is not how it ended up needing to be. I regularly expressed my concerns of 'kid cruelty' to my wife as the school years approached. I was worried as she went to Kindergarten, and I was delightfully surprised at what actually happened. Kelley was in Pull-ups her first day at Kindergarten, and still is now (3rd Grade). She had her colostomy reversed while she was in Kindergarten, and for the most part the kids didn't care - really - just plain didn't care. Every now and then a question would get asked, and it would get uncomfortable for her, but she learned to just tell the truth (my tummy doesn't work right) and let them worry about it. For the most part in the early years, the kids were just curious, not mean. It was difficult for Kelley, but not really painful. She has plenty of friends now (and then), and goes to sleepovers etc. Is it easy? Not really, but it's not really difficult either. As far as the kids being 'so mean'........ I expected it, but it has really NEVER happened - really - NEVER!. As I said there have been some awkward moments for her, but very few hurtful moments.  I'm not trying to talk you into or out of any surgical decisions, just don't rush into anything out of fear of cruel kids - at this age (elementary school), the kids are much better about handling differences than the adults - it just doesn't phase them - some curiosity, but not much meanness. We have yet to handle middle school, that may be different, but we still have a few years to work on that..

Talking about Scars/Medical Conditions
From Cathy (mom to Andrew)

Andrew is one big scar. He is not at all shy about scars and as a matter of fact, he is quite proud of them. He tells the kids what they are all from and I think the kids he knows think it is really cool too. When he was younger, the scars really bothered me. Eventually it didn't seem so important and they do fade. I tell Andrew that his scars are his Medals of Courage. Have any of you heard the theme song from Hercules - Go the Distance? What a great song for our kids.

At school, Andrew doesn't have to worry about someone finding out. Everyone has always known and it’s NO BIG DEAL.. We didn't tell the kids ALL the details just enough so they would know that some things medically were beyond Andrew's control..

Not Telling Classmates to Avoid Teasing and Give Your Child Time to be Ready
From Kathleen (Mom to Sean, HIA)

When my son Sean, was 6 years old we went to New York for a colon re-section. Sean insisted NO ONE be told about his surgery or condition. I spoke with a child development specialist in the hospital about this attitude. She said at his age, we had to respect the way he wanted to handle it., and that it was perfectly healthy. Sean is 7 1/2 now and I have often thought that his decision was the best for him. He had a few soilings at school, but he took care of them and no one was aware of the problem. Since he chose not to tell anyone, it was never an issue with the other kids. Now that a year has gone by, and his enema routine works so well there is very little risk of soiling. He told his teacher he had surgeries when he was born. But he still never tells anyone why. When the dentist asked what his surgeries were for he replied "I don't know". I did suggest to him he say they were on his "insides." That usually satisfies the person's question. But the most important factor in deciding how to handle it is how your daughter wants to handle it, and her particular condition. In our son's case, he was soiling only occasionally. It seems that if we told the other kids about it they might be on the lookout for soilings, and it would be something to set him apart from the others. The way we handled it, it was just never a factor in anything that went on with school.

One other thought, will your daughter be going to kindergarten with any of the pre-schoolers? If not, you might want to let her be open about it now, if that is what she's comfortable with, and then you can re-evaluate when she changes schools. The child development specialist I spoke with at Schneider Children’s Hospital, at Long Island Jewish Hospital in New York was extremely helpful. Maybe one of them would be willing to talk with you over the phone. They work with Dr. Pena's patients, so they are very familiar with the social issues of soiling.

 

Building Self Esteem at Home and School

From Self Esteem and Your Child by Sandra Rubin, MD, in PTN Newsletter Vol.3, #1

Self esteem is defined by the Webster dictionary as self respect, pride, belief in ourselves, and what we are. We seek in our life to find the respect, approval, and admiration of our fellow human beings. Enthusiasm and confidence are associated with a positive self esteem. Shame, guilt, and doubt are associated with low self esteem. Self esteem is established through:

1) the capacity to master skills, to feel competent

2) the establishment of human relationships and the feeling of belonging to meaningful cultural groups

3) the internalization of a positive image about ourselves and our limitations

Money, beauty, or health is not a guarantee of self esteem. The capacity for the child to feel good about himself will start with his relationship with his parents, their acceptance for who the child is, not who they dreamed he would be. It is important during the toddler stage for parents to set up limits. The child needs to learn that there are some things that will not be allowed. Clear boundaries help the child face limitations in the outside world. Sometimes with a child with a chronic illness the parents may feel uneasy about setting up clear limits, but in the long run, structure, appropriate limits and expectations are going to give rise to a solid self esteem. The development of ethical values will also enhance their self esteem. During school, participation in sports and team activities build self confidence. Children get pride from their accomplishments in school. It is said that children at this stage feel “I am what I learn”. They may suffer if they don’t get straight A’s in school as their parents wished them to achieve. It is important for the parents to have reasonable expectations. Children need approval and praise from their parents and teachers. Children with chronic physical illnesses need to know that outside of their homes they may find people that say mean things as a result of their own ignorance. Children need to be ready to defend themselves and be prepared to fight with appropriate words if necessary. They need to know that what happened to them is not their fault or anybody’s fault.

From Learn to Avoid Perfection, based on Dr. Mansour-Maxbanilivy’s presentation, from PTN Newsletter Vol. 2, #4

The onset was at birth. As far as the child is concerned, there was never a period of time when all was ok., then suddenly being stricken. This is their life - it is all they know, they don’t know any different. It is the family that reacts and their level of expectation is what will determine how things go. Many of us try to be perfect, and create a perfect life for our children, to compensate. This perfectionism creates problems because not only does it put pressure on the self, but translates onto the child as well. The message you want to convey to your child is that they can overcome this, and become well-adjusted. How parents deal with it will determine how successful the child is.

From an Interview with Michael, 21 yr., IA in PTN Newsletter Vol.3, #1

When Michael is asked what he would tell parents today, he offers the following: “Treat your child as normal, not handicapped. Don’t let what the child wants to do in life be hindered by this. Most of all, don’t let setbacks deter you.”

From Father and Son an article in PTN Newsletter Vol. 3, #3

Note: A story by a father with IA who had a son with IA

My day-to-day life is heavily impacted by having been born with IA. Hardly a day goes by that I don’t think about how my bowels are doing. But to me this is normal and it is very rarely a big deal. It is all I have ever known and I do not feel sorry for myself about it. It is just one more thing to think about every day. I have never viewed my condition as a reason not to participate. I credit this to my parents, who never led me to believe that there was a reason for me not to join in. A strong belief ingrained from childhood in my ability to lead a full life became a self-fulfilling prophecy. It has also been important for me that I am not ashamed of my condition. In general, I have not had any reason to be less than upfront with my friends and family when the subject has arisen. I believe it is important that we teach a child born with IA that this is nothing to be ashamed of and that probably begins with the parents themselves not being ashamed of it.

Subject:

From: Muriel

I am one of those older kids (23 yrs. now), and yes, I have gone through all the emotional stages that come when I realized that I was different, and had to deal with some limitations. I think that every kid (ia or not) will have some emotional problems when they get older and start to really understand themselves and the world around them. I don't think it's fair that I was born this way, but I came to realize that I couldn't change that, I would just have to make the best of it.and that's when I started to accept myself and my limitations. What really helped me was knowing my parents are always there to listen to me, and if I need a peptalk once in a while, I call them and when I put down that phone I feel so much better. Empathy IS enough! Being there for your child is the best you can do. always listen to your child, and show your unconditional love. It will be enough, I assure you. I know, because it has been enough for me.

Effects of Short Stature at School

Note: See Growth/Size Issues section below for more information

Impact on Teacher’s Expectations

From Julie (mom to Rachel, 3 1/2 years, HD)

My son's first grade teacher told me that if you have a small child (my son is also small) you have to be careful that teachers don't expect less from him or her because the teachers perceive the child as being younger and less capable.

Impact on Starting School

From Karen B. (Mom to Sammy)

Sammy is just going to school with kids her own age! A couple of them are older, but the majority are within a few months of her, some even younger. I don't think it is fair to her to hold her back because she is small - that is never going to change. She is on an equal footing emotionally and intellectually as the other children in her class, so why keep her home? She will only be 4 for the first two months of school, and will turn 5 in November - I don't think that is out of the norm. Since her teachers and pediatrician all recommended that she continue on, we feel that it is the right choice for her. Everyone agreed that if it weren't for her size, holding her back wouldn't be an issue. We decided that since she is always going to be small, and doesn't just need time to "catch up", there is no point holding her back mentally or emotionally. Frankly, I would rather she be the smallest and the youngest, rather than the smallest and the oldest! She is really so small that a year wouldn't make a difference.

From Pat

I was 4 (five in December) when I started kindergarten. All was well until around 5th or 6th grade. I had no trouble with the academics, but socially the others took off and I was left behind. They were starting to wear bras and stockings and makeup, and I still wanted to play tag and hide 'n' seek!! It was devastating. And to be truthful, I never did regain the confidence I lost during those middle school years. I am still people phobic, yet I had been the leader on the playground and one of the most popular kids in elementary school! I really think the older kids have the advantage.

 

Miscellaneous

From Susan (adult, HIA)

I believe that I shift positions more than most adults when I'm sitting. Your posts helped me figure out why! Clothes which are tight or have bulky seams through the crotch (like jeans) are especially uncomfortable for much sitting --they compress and rub against scar tissue, irritated moist skin, etc.

 

Growth/Size Issues

Vitamin Supplementation

From Teresa (Registered Dietician, Mom to Carolyn DS, IA)

Calcium, protein, iron, and zinc, are important for growth. This is not always easy. Supplementation may be needed for some of our kids. It is probably not a bad idea to at least have them on a general kids one-a-day multivitamin-mineral (check to make sure it has some zinc because not all of them do) unless they have reduced kidney function, and also some extra calcium (which is OK, even recommended, for kids with reduced kidney function). I'm sorry if this sounds confusing. It is. If in doubt about your child's nutritional intake, see if you can consult a registered dietitian with a background in pediatrics.

Emotional Impact

From Dee (Mom to Steven, HIA)

Many of these kids are small(or real skinny), abnormally small-which makes sense for a multitude of reasons. Steven, almost 9, is tiny but he completely defines himself as a short person..I guess I mean that he has integrated this into his self-concept as a good thing. He once told me that he would feel strange if he were really tall-it is incumbent on the parents to not equate size with power or health for that matter. If they sense that a big body is preferable to you then they will want that for themselves and I am sorry to say, most of these kids will come up short...I can still put Steven on my shoulders for the best view and he gets the best clothes because he doesn't outgrow them like the others..most little ones are always the teachers pet and big bullies are too ashamed to pick on them..you would be surprised at the hidden benefits, focus on these things.

From Dawn

As parents it is our job to help our children gain the highest self esteem possible. I have noticed during the past 4 years with my daughter that children with special needs do not seem to be bothered by their problems. Usually, it is us parents that have a hard time dealing with them. If we, as parents, make them feel great about who they are our children will not care if they are short, tall or in between. My daughter has only asked once about her size. She is 4 years & 4 mos.and is 36 inches and weighs 31 lbs. We talked about her being little and I explained that she was not little but petite and then gave her examples of other famous people (real or make believe) that were petite. For example,, Courtney adores all of the fairy tale princess'. I explained to her that Cinderella, Snow White among others were also petite. She thought that was really neat and has never asked about it again. If people look at you or your child funny when your child's age is revealed let them know all your child has been through. They will think twice next time before being so rude. I am sure these very people have their own problems that they wouldn't want to be discriminated against and don't even realize how rude it is. My main point is that it is up to us to make sure our children have a high self esteem. If they hear you talking about how small they are or making comments to that effect they will have a hard time with it. If you don't care how big or small they are the children won't care either. My daughter is one of the most well adjusted children I have ever known. She has visible signs such as being small for her age and wearing leg braces. When people ask she is usually quicker to explain than I am. She feels very good about herself and she should.

Growth Hormones

From Karen B. (mom to Sammy, cloaca, etc.)

We got similar information about Sammy in regards to why she is so small, but the recommendations were very different. The doctors said that growth hormone treatments shouldn't be started until the child was about 7 or 8 years old. We were also told that if the child does not have a growth hormone deficiency, the treatment would not increase their final height, but just accelerate the time they reached it, so that they would be taller going through the school years, but still end up at the same height. There was just an interesting article in the NY Times a couple of weeks ago about some growth hormone studies, and they showed that the kid who received the treatments did not gain any height. In fact, it showed that some of them were shorter than expected. In any case, we decided that we weren't going to pursue the treatments for Sammy at this time. Sammy is about 33 inches tall, and is almost 4 years old. She has never been on the charts for height. As her pediatrician said, with all of her other problems, it will probably be her height that is her biggest social obstacle.

            The article from the times states that guidelines support treatment of very short children, i.e., those who are so short they have trouble carrying a reasonable size knapsack to school. They also said that most of the long term studies that have come out recently "are NOT overwhelmingly in favor of using growth hormones". In a Japanese study, slow-growing boys who were not hormone deficient who were treated with growth hormones wound up being nearly three inches shorter than those in a similar group who were not treated. Another statement from the article (my favorite), was that "short is not necessarily the same as sick".

From Teresa (mom to Caroline,6, DS, LIA)

For those considering this, another question to ask your doctor is about the increased risk of leukemia. There are a few "clinics" around the country that promote giving children with Down syndrome growth hormone to help them grow (these kids usually end up pretty short; we were told our daughter may not top 5 feet. I am 5'8" and Pat is 6'1".) I went to some kinda talk once where there was a pediatric endocrinologist on the panel. He recommended AGAINST growth hormone therapy for kids with DS due to the fact that they are already at higher risk for leukemia, and then you would add to that if they were put

From: Karen

We went to a developmental pediatrician yesterday who specializes in FTT. He said there were 3 causes:

1) Not taking in enough calories - not being offered enough food, enough variety of food, not being allowed to feed themselves and so rebelling, etc.

2) Calories are moving through too quickly - ex. constant diarrhea, malabsorption, etc.

3) Calories are being used up by a disease in the body.

He said our boys had good fat tissue and so 2) and 3) couldn't apply. Nor did he think it was 1). He said it could by a thyroid problem or growth hormone deficiency and recommended a bone age study - requires x-ray of hand - to rule both those out. He said the blood tests sometimes miss some things and bone-age wouldn't. The other possibility is they are just small! He said ht. at 28 months times 2 is a fairly accurate predictor of adult height. Note 28 not 24 months. Also said you can average mom and dad's heights and add 4" for boys but it wasn’t as accurate as the 28mth. method..

Swimming in Public Pools

From Bonnie  (Mom to Amy, 9 years old)

I've been reading the posts concerning the children  swimming and the possibility of accidents. A child died after swimming in water that was contaminated with feces at White Water in Atlanta few weeks ago. Several other children ended up in the hospital. They all got an e-coli infection from the feces. It seems that a toddler had an "accident" in his/her diaper while in the pool and since the park did not know it they did not take preventive measures. The children who got sick visited the park on 2 consecutive days (so normal chlorine levels will not kill e-coli) From the reports in the newspaper that requires immediately evacuating the pool and closing it for up to 2 days while the additional chlorine is added and then allowed to come back down to acceptable levels. My mother-in-law, who is a day care director, says that the health department here will not let her take any child who is not potty trained to a public pool due to the risk of contamination and that no diaper or swim suit provides adequate protection. When you are letting your child swim in their own back yard "kiddie" pool you need to take extra precaution if there is an accident - even if you think it all stayed in the diaper/swim suit/swim pants/etc. You should drain the pool and then use Clorox and detergent to wash it out. I hate to be a party pooper about this, believe me. Amy loves to swim and we are having to deal with this, too. But I would also hate for anyone's child to get sick because I didn't speak up.

Note: See the information on buttocks strapping under Supplies in the Laxative Information section. Several PTL members have commented that swimming often causes their children to need to have a bm at a time when the child usually doesn’t - even children with cecostomies. It could be the change in temperature (cold water), the exercise, or the water going into the anus. It may be worth a cold shower before swimming to get the bm over with...

From Jill

Check out the website www.mypoolpal.com. This is a water safety product manufacturer's site . Check under the Special Needs category - there you can purchase swim diapers for up to a 34" waist or 141 lbs. individual. To place an order, call 1-888-POOL-PAL. You may want to ask for a catalog first - there is a greater selection of fabrics than on the Internet.

Note: http://www.disabilitymall.com/incontin.htm has a lot of incontinence products some of which may be suitable for swimming. Also, http://www.sprintaquatics.com/clothing.htm has reuseable swim diapers for kids

From Karen B.

Sammy’s loose sphincters allow enough pool water in to loosen up the stool. That combined with the vigorous kicking has a decidedly deleterious effect!

Teens - Letting Go

From Letting Go an Article in PTN Newsletter Vol. 3, #5 by Ann McCullough

Around age 11, Matt began resenting the enemas and let me know it! My impression was that he must have finally begun resisting the whole idea of his bowel problems. Looking back now, I realize he was objecting more to his lack of control over the situation, rather than the problem itself. My desire to “help” was more of an interference and an invasion of his privacy. I had to ‘let go”; become less involved myself. He needed to take over, and he did just that. As a teenager, we needed to support him and give our suggestions.

 

Keeping It a Secret

Excerpts from PTN Vol. 6 #4, Nov.’97

From Dave  (Dad to Andrew)

We decided very early on to always be honest with Andrew and tell him exactly what was going on in terms he would understand. We never allowed him to feel he was different than other kids just that he had a different way of pottying, etc. We believed it would be best if he be the one to tell everyone his problems in the words he wanted to use. We talked with him about it but he didn’t want anyone to know. Finally, he got to where he was getting embarrassed and teased anyway due to his accidents and decided to tell everyone what was going on. He was so relieved. Everyone was very considerate of him and his problems from that point on and started to treat him like a normal kid instead of a freak who always soiled himself. Trying to hide the truth from people will only cause greater embarrassment in the future.

From Rochelle (Adult, IA)

My advice is to encourage your child to be who he is and be proud of himself. I feel as though I have become a strong person from the whole ordeal and feel there is a reason I was born this way. If people ask questions, I think they deserve the truth; if they genuinely care, they will help. If not, who needs them?

From Mary  (Mom to Patrick, IA)

If my husband and I accept and acknowledge Patrick’s problems, then he will. If we try to hide them, even if we do it to protect him, he will pick up on it and feel that something is wrong with him. I really think that it isn’t what you are faced with in this life it’s your attitude toward what you have been handed. I want Patrick to know that I totally accept him and I’m hoping he will accept himself if he knows this. I never want him to feel shame about his condition and I’m hoping that by talking about it, we can prevent him from feeling that shame.

From Letting Go an Article in PTN Newsletter Vol. 3, #5 by Ann McCullough

Any interests that our children have are expressions of themselves and should be encouraged at all costs. We must stress the positives and never the negatives. Over the years we had hoped to shelter Matt from having a “problem” (incontinence) and any associated embarrassment of odor, soiling, and the chance of peers “finding out”. But, as hard as it may be, we could never limit him because he would have resented us for it. We took chances, sometimes it was fine, other times maybe not so good. We can’t make a bad day go away, but, we can let him know he is loved regardless, and it WILL be ok.

Going on Sleepovers and Playdates

Jane (mom of Tyler, 5 1/2, HIA, cecostomy)

I'm open with parents when I take Tyler to their house. I just explain to them in a simple way, that he was born with a birth defect, he's had many surgeries (so the scars aren't a shock) and that he has a button.. Some will ask questions and they are very thankful that I told them so they won't be surprised by anything. I think they have the right to know something, as much or as little as you want to share, since your child will be in their care. Also, I always wanted to make sure they knew so if something did happen, they wouldn't be shocked and Tyler would get immediate attention. I also tell them that if Ty talks about enemas, flushes or surgeries, that's just a part of his life. He's very open about his defect. When Tyler tells stories of his life, they are of a life different then most of his friends understand, so questions are usually raised. Tyler just answers them as no big deal and they get back to playing. But I often wonder what questions are asked at the dinner table that nite by the friends so I like to give a bit of Ty's history so parents understand and know how to answer. I guess what and how much you tell is what you feel comfortable with and how good of friend this child is.

Louanne (Mom to Meghan, IA, Cloaca, Mitrofanoff)

I think you should "mention in passing" the differences in your son (illeostomy). Play it down, but let the mom know. Tell her she probably won't have to deal with it at all, but you wanted her to know. I say this for two reasons. I don't think it's fair to your sons or the mother to NOT tell her a little. It could put your child in an awkward situation if something should happen and no one around them knows anything (surprise, disgust, etc. - scary to think of). I said "mention in passing" as a way of down playing how much detail you go into. I always tried to communicate some knowledge to the other mom without violating completely my child's privacy. Often, tone of voice is significant. If you act like it's no big deal for the afternoon, the other mom probably will too. The second reason I say tell in this way is this: it hopefully leaves the door open for further invitations. If you don't tell, and something happens, that person (and possibly others) may shy away from inviting your boys again. This is exactly what you don't want to happen!

            Just one more work of encouragement: I have found that my child is by no means THAT different from so many others. When she first started being such a "social bunny," I worried about the very thing you're going through now. But, I found that there are many of her friends with other problems that the mothers are relating to adults. My daughter's best friend has severe food allergies. She could die if she eats any dairy, corn, or peanuts. Her mother was very up-front with me on that when we first started invitations. That allergy actually interferes more for me than my daughter's differences do for other mothers. There is another friend who has severe asthma. Just remember, lots of kids aren't perfect medically. Chances are, the mother you talk to may share a problem her child has that you never knew about!

 

Giving Medical Updates to Family and Friends

From Karen B. (Head of PTN, Mom to Sammy)

It is so difficult trying to talk to friends or family who just don't understand any of this. I have given up trying to keep most people up to date on Sammy's issues. I mostly just say she is doing well and has some ongoing problems that will be dealt with in the future. It is frustrating for me to try and get into the details and realize that the person is not comprehending anything I say!

 

What, When, and How to Tell Your Child He is Different

Karen (mom to Stephen, 3, VATER)

I've been on this list for over two years but I don't recall seeing any tips re: when/what/how to tell your child he is different. Stephen had all of his surgeries in his first year. He goes to lots of specialists but until recently (he is 3) I don't think he listened to or understood the conversations w/ the doctors. He has never asked why he has to go and his twin doesn't. Anyway, he is potty training right now and we are not sure he will be successful. His brother has been trained for months. I am still quite hopeful Stephen will be able to train so I am not ready to tell him he is different, it is harder for him, etc. (The boys are home w/ me so there are no social concerns yet.) But, at some point, we will have to explain this to him. I was hoping that some of you would be able to share some tips re: this. For example -What should we say?, What shouldn't we say?, At what age did you do this?, etc. My husband recommended spending a month or two telling the boys how everyone is unique and special. A friend recommended being prepared to tell the health and life style issues others in their lives have. Any other ideas?

Mary, mom to Andrew HIA, Isaac, Sarah and Rebekah

We waited until the subject was brought up by andrew. When his younger brother (Isaac 6) was an infant, we were driving along, and from the back seat came this voice that said "I will teach you how to cath yourself when you get older". After a good cry and talking time with my husband we came up with a plan of attack. He was just past his 4th birthday so we took it to his level. We told him that when he was growing inside mommy's stomach things didn't go quite right. We told him that everything was there but not in the right spots. We told him that the doctors have put everything together properly now but that things don't work the same for him as they do for most everyone else. We let him know that he is very special and very loved. He accepted this and moved on. Since then we have tackled his emotional needs as they arrive. We have been as honest and straightforward with him, as much as his age will allow. My only suggestion is to be honest and loving, and talk to them in terms that they will understand, don't overwhelm them. I would have a plan ahead of time and deal with it when one of them ask the question. Andrew is 10 now and is still asking questions, which we answer honestly. As an RN I have a lot of books on human anatomy in the house and we have been drawing on them since he was about 5 and able to better understand the structure of the body. When the questions arise a visual aid helps a lot. One thing I try to avoid is the word "deformity",

Bonnie M. (Mom to Amy,10 years old)

I don't think there was any one incident with Amy where we specifically dealt with her differences. Best I can recollect is that we just answered questions as they came up. That way we dealt with it when it was an issue for her. I do agree that it is good for everyone to teach children to honor their unique selves - and the uniqueness in others. But I don't feel that it is necessary to sit Stephen down and make a big deal about the ways he is different from Timothy or Noelle. He'll ask when he needs to know. I would spend some time mentally anticipating his questions and getting comfortable with how you want to answer him. That way the questions don't catch you off guard. Kinda like preparing to answer their questions about where babies come from. You only answer the question asked and then once they have processed/dealt with that answer they will ask the next one, and then the next one..... as they are ready for the whole picture/answer. It is best to not give any child too much information at one time. They can get overwhelmed and confused. And I think that it is important to be as "matter-of-fact" about it as you can be. I've seen too many children who have medical problems who think of themselves as victims and are serving the cake at the pity party because of the way their parents act overly sympathetic or guilty. When Amy has lamented her "differences" I have made a point to help her see that all children have "differences" and she is no less special or capable because of hers. And yes, it isn't fair that she's had so much to deal with but at the same time she is lucky to have had great doctors, modern medicine and family to see that she got what she needed to get better.

From Dee (mom to Steven)

I think your son probably knows more then you realize. I think you should just let it unfold naturally, they all come to it in their own way.

From Jane (mom of Ty, 5 1/2yrs., HIA, cecostomy)

I'm not sure there is a "right or wrong" age or way to tell your child. We have never sat down and had a talk with Ty or his sister to discuss his "differences", we have always just dealt with it as being a part of his life and Ty has accepted it.  Ty has lived nothing else so in his eyes, he's "normal" for a lack of words.  We have always told him how much we love him and how special he is to us just like his sister, he's really no different then anyone else, and he can do and be anything he wants and that's what he believes today. He has asked us a few times why he has to do things and Alli doesn't but we just explain to him, God made him a little differently and because of this, he needs to do these things to keep him healthy, and that's ok with him. Now that's he's older, we try to explain in more detail or give the consequences if he doesn't do these things.  Maybe as he gets even older he'll ask more questions and want more "medical" information but for now, he's happy. He just doesn't believe he's different even with a cecostomy button, scars from 11 surgeries, and needing to be reminded at times he needs to use the bathroom.  He's a happy 5 1/2 yrs., ok with who he is and that's what I hope to instill in him for the rest of his life. We live and talk about his defect on a daily basis with the flushes he has to do and don't make a big deal over it. We felt that dealing with it head on from day one was the way to make him comfortable with who he is and wondered if we had a sit down discussion, he may begin to feel he is different or something is wrong. When Stephen asks the question, answering with the truth followed with lots of love and understanding should help him deal with his own personal hurdles and get through it ok.

Answering Why When Our Children Ask

From Bonnie  (Mom to Amy, 8 , VATER

Amy and I have dealt with the "why" issues several times. One way that we have approached it with her is to try and stress that there is no such thing as "like everyone else". We point out that all children are different - some have medical issues to deal with, some have physical problems, just make a list of what is "different" about each child in her class. Then we stress what is the same - what they like to do, what they have in common, etc. It helps her keep it in perspective. It also is helpful to share with her about the children we "meet" here on-line - while she may not know them personally it helps to know that she's not the only child in the world dealing with surgery, etc. I expect that at this age Amy just has to take our word for it - - I try to share with her that I really don't understand "why" she has the problems that she does - - there really isn't an answer for that. I just try and help her see herself as positively as possible so that as she matures she will grow in understanding about herself and be confident about who she is. We also approach each surgery or procedure in as positive a manner as possible. We talk about how doing it will make her "better", that we are thankful that the doctor's are there for her and that we are all working together for her benefit. We try to keep the "sympathy" level to a minimum - we don't want Amy to feel sorry for herself. I sometimes think that the "why" issues are some of the most difficult that we have to face. Unfortunately there isn't a "good" answer - - and I think it is helpful to be honest with them and tell them the truth. We just don't know why.

From Susan (Mom to Joey, 9, dys-motility)

It is a hard time when your child asks why questions. I know Joey at times has asked me, "Why do I have to always be the one who is sick?" It sounds like you are handling it well by reassuring her that you love her. The truth is that there are no answers. So my advice is you let her verbalize her feelings, you echo her thoughts and then tell her, despite her problems she has a lot of living to do. And then start moving. Do things. Keep her busy doing all the things she can do and try not to let her dwell on what she can't do. I try to be very matter of fact about Joey's medical routine. I also think that feeling sorry for oneself can be somewhat developmental. My perfectly healthy son went through a period of crying and saying nobody liked him when he was in Kindergarten. But thankfully it passed.

From Dan (Adult, IA)

IA has been around since forever.... it happens. It's not like all the parents were on or exposed to something unnatural. You can't say all the IA births started after, for instance, they put nutrasweet on the market - there's no connection. As Dr. Pena stated IA births have been noted in the earliest histories and there was no nutrasweet (or any modern chemical exposure) available then to cause it. I think the clearest answer right now is “Nobody knows why yet”. Work is slowly being done to analyze the data, particularly when there are specialists (like Pena, et al) who are collecting and storing that data. Time will eventually reveal either a way to prevent this in developing fetus', or a test will be developed to determine couples and/or individuals at risk of parenting IA children. Knowing how and why IA births occur will make the future better for parents and their children. But it takes time and money, and it IS happening.

"Why me?"... well my answer is...

"I've got my challenges in life and you've got yours. You do your best to deal with what you've got. If anyone is to be judged one must take into consideration not only how far they got but what obstacles they had to overcome to get there. Don't concentrate on your obstacles or they'll blind you to your goals."

From Pat (mom to Kevin, 6, IA))

With Kevin, we have had some outbursts of "It's not fair!" since he started bowel management and going to school full-time (he's 6). Surely he is frustrated by having to worry about soiling his pants at school (although it happens so rarely that he doesn't worry too much about it). We do try to empathize by acknowledging that he's right - it isn't "fair", and we wish as much as he does that he didn't have to have this problem. But beyond that, we maintain a pretty matter-of-fact attitude about it and he seems to be more accepting of the problems for now. When he complained about being different, I showed him the PTN picture gallery so he would know he isn't the only child in the world who has to have an enema every night. This really seemed to help him feel better about it. We also got the book "Everybody Poops" (or is it "Everyone Poops"?) when he was younger. This was a good vehicle for open discussion of his situation. In truth, everyone DOES have to take time out to spend time in the bathroom; for our kids it's just a bit more complicated and takes a little longer. When I think of it this way, the bowel management doesn't seem to be so strange after all. We also tell him that Mahatma Gandhi and a lot of other people choose to give themselves enemas daily instead of waiting until they feel the need to go. I really think your attitude will be the one your child adopts. If you don't treat it as a serious disability, your child won't feel disabled. It's a manageable difference.

From Self Esteem and Your Child by Sandra Rubin, MD, in PTN Newsletter Vol.3, #1

Children need to know that what happened to them is not their fault or anybody’s fault.

The Origin of Anorectal Malformations

Please see the Tethered Cord section for information on how to participate in a genetics research study to determind the cause of neural tube defects which includes tethered cord and spinal dysraphism.

From Dan (adult, IA)

The topic of the cause of anorectal malformations has come up numerous times since I joined the list. I decided to ask Dr. Alberto Pena for an explanation as to "what doctors currently believe" in this area. The remainder of this message is quoted verbatim from his emailed response (with his permission)

Note: This was posted in Feb. ‘2000

 

Dear Dan,

            Thank you for your E-mail and your concern about the origin of anorectal malformations. Last year, I had the unique opportunity to go to the NIH (National Institute of Health), to the building where they are working on the human genome. They wanted me to tell them my experience on anorectal malformations and they tried to explain to me over a period of 2 hours, how they determine whether a disease is genetically determined and how they find out the specific gene.

            At the present time, anorectal malformations are considered of unknown origin. It is called "multifactorial". When we say multifactorial, basically that means that we know very little about the origin of the disease. Multifactorial also means that there are many unknown factors producing a disease, and most likely, there are many genes involved in determining this condition. When geneticists study the genetic component of different diseases, they usually start with conditions that are well characterized as far as their inheritance and they are determined by a single gene; therefore, they are relatively easy to work with. Unfortunately, anorectal malformations do not belong to that group, and therefore, it is one of those defects that will come last in the list.

            We have identical twins patients, one has the disease and the other does not, which means that perhaps there are also environmental (in-utero)factors contributing to produce this disease. In addition, we know that a couple, with a child with an anorectal malformation has a 1% chance to have a second one, whereas, the general population has 1 in 4,000 chances. That means that there is something in the couple that determines an anorectal malformation. Also, we know a specific type of defect (perineal fistulas, very low defects), that run in families. We have seen families with 2 or 3 of these patients. I have in my files, 1,290 patients and 8 families had 2 children with this defect.

            I guess that it is going to take another 20 years to find out exactly, the origin of this malformation.

NOTE: Karen B. did a whole series of articles published in sequential issues of the PTN news on the various syndromes and causes of IA. I believe these are available on the PTN web site.

From: Cathy (Mom to Andrew)

One of the Doctors who is on our advisory board..Dr. Paidas has been doing embryology studies on IA and other associated defects. He has found that the defect occurs between 15-21 days gestation which is well before most even know they are pregnant. He has not found anything that determines why this happens whether it be drinking, smoking, drugs, etc..it affects all levels of society randomly. It is also very unusual for another child in family to be born with the same problem. I, myself , have 3 sons...the middle one is the one with the IA..and he has a lot of the other associated defects plus some other stuff.. I believe the chance of the child with IA having children with some type of B. defect is a bit higher than the norm but that is only because statistically they already have an "imperfection" so, they are automatically higher risk.

From Dan (adult, IA)

Genes aren't always "off" or "on". Neither are they always dominant. Genetics, combining one set of dna with another, yields a whole bunch of possibilities, even if you only look at a small number of traits. Also, a carrier of a gene has different levels for which that gene will express itself. Neither of my parents have red hair, however my sister is a redhead, I have brown hair (as my father did) and when I reached adulthood my facial hair came in mostly red. Obviously our parents gave us some "redhead genes" and they expressed themselves in different ways. If there is indeed one gene for IA, there are odds for it being passed on, and, if it is, it may or may not be expressed in an individual to an extent that it's an issue. Dr. Pena told me my risks for fathering a child with IA are roughly 1 in 1000, which is 4 times more of a risk than the general population...If it is solely genetic in cause, I am a carrier of that gene. If I father a child, I may or may not pass that gene on, and if I do, it may or may not express itself in him/her.

From Caroline

As promised here are articles for you to peruse. If you have any questions please do not hesitate to ask. Please email me w/ your thoughts. Based on the following papers I believe VATERS/VACTERL may occur by at least one of these methods (and there are probably more):

1. diabetic mother (fact based on research)

2. mother that has taken sex hormones shortly before conception, or within the first six weeks after conception, or became pregnant while on birth control (w/ sex hormones) - please note this will only occur if the contraceptive has changed the mothers glucose tolerance/metabolism - please see articles (speculation based on research)

3. mother breastfeeds 1st child while on progestin-only contraceptive and then becomes pregnant within a few months w/ second child- please note this will only occur if the breastfeeding and progestin change the mothers glucose tolerance/metabolism - please see articles. (speculation based on research) What is VATERS/VACTERL association and when it occurs? The following papers define and classify it.

One link they currently have to VATERS/VACTERL is diabetes

1. VACTERL association - www.thefetus.net/sections/articles/Syndromes/Vacterl_association.ht ml

2. The spectrum of congenital anomalies of the VATER association an international study -

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed &list_uids=92157

3. VACTREL Association -

www.icondata.com/health/pedbase/files/VACTERLA.HTM

4. VATER or VACTREL syndrome -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list _uids=98842

5. VACTREL association,epidemiologic definition and delineation -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list _uids=8826430&dopt=Abstrac

6. The Vater association in a newborn infant of a diabetic mother

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMedlist_ uids=40343

7. VACTREL as primary,polytopic developmental field defects

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=10076

8. Primary developmental field. III: Clinical study of blastogenetic anomalies and their relationship to different MCA patterns -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=91297

Twinning is common w/ VACTERL

9. Congenital malformations in twins: a population study -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=91297

10. Monozygotic twins concordant for tracheo-esophogeal fistula a discordant for the VATER association -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=56258

Sex hormone info.

11. Exogenous sex hormone exposure and the risk for VACTERL association -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=377

12. Exogenous progestogen and estrogen implicated in birth defects -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=671

13. A syndrome of multiple congenital anomalies associated with teratogenic exposure -

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids=110

14. The VATER association: malformations of the male external genitalia-

www.ncbi.nlm.gov/entrez/query.fcgi?cmd=Retreive&db=PubMedlist_ uids1258

The following papers help to define WHY diabetics, and HOW contraceptives can potentially cause VATERS/VACTREL -

15. Low-dose oral contraceptives and carbohydrate metabolism -

http://130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+101

16. Contraception in diabetic women: comparative metabolic study of Norplant, depot medroxyprogesterone acetate, low dose oral contraceptive pill and CuT380A -

http://130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+1

17. Depomedroxyprogesterone-induced hypoestrogenism and changes in vaginal flora and epithelium -

http//:130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+1

18.Contraception and the risk of type 2 diabetes mellitus in Latina women with prior gestational diabetes mellitus -

http://130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+21 (This article is the one that says that Progestin only oral contraceptives were assoc.w/ an increased risk of diabetes in breast-feeding Latinas with recent gestational diabetes mellitus)

19. Effect of oral contraceptive use on the incidence of impaired glucose tolerance and diabetes mellitus -

http://130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+81

20. Metabolic and fibrinolytic response to changed insulin sensitivity in users of oral contraceptives -

http://130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+1

21. Clinical aspects of the relationship between oral contraceptives, abnormalities in carbohydrate metabolism, and the

development of cardiovascular disease -

http://130.14.32.44/cgi-bin/VERSION_A/IGM- client?13938+records+101

You can access them by going to the National Library of Medicine: http://igm.nlm.nih.gov/  then press Medline on left hand corner, then put in VACTERL in the subject search. There are more than 100 articles. If there is an article you are interested I am sure you could also put in the title of the article.

Laxative & Constipating Foods

Tracers

Tracers are foods that are identifiable in poop. Tracers allow you to see how long it takes for a food to work its way through your child’s system. The important information is not how quickly the tracer shows up in the poop but how long it takes for the last of the tracer to show up. Therefore, when using tracers, it is good to wait a few days before feeding the tracer food again. Otherwise, you won’t know which feeding the tracer is from.

Foods that Act as Tracers

Sesame seeds

Kiwi (black seeds)

Whole peas (shell)

Green beans

Corn

Bell peppers w/ skin - green, red, yellow

Popcorn - note popcorn may be tough on the colon, a prolapse, etc.

 

The No Nonsense Approach to Discovering Food Affects

Take one favorite food you know your child loves. Let’s say it’s hot dogs. Feed your child hot dogs for breakfast, lunch, and dinner. Nothing else. Do that for a couple of days. If the bowels are not adversely affected, you can now add another of your child’s favorite foods. Let’s say it’s pizza. You can now serve hot dogs and pizza for all meals. On it goes...

 

Constipating Foods

BRATT - bananas, white rice, applesauce, tea, white bread (toast)

Pena - dairy products, pasta, white flour products, tapioca, crackers, pretzels

Foods on Constipation Provoking Diet from Pena

Bread - white, light rye, rolls w/out seeds, saltines, soda crackers, matzos

Cereals - rice or wheat cereals, farina, strained oatmeal, commercially prepared cereals from corn, rice krispies, cornflakes

Starches - cooked refined corn, white potato w/out skin, mashed sweet potato, plain pasta, refined rice

Vegetables - vegetable juice, cooked tender carrots and beets, cooked and pureed green beans, peas, squash, spinach, pumpkin

Fruit - applesauce, bananas, peeled apricots, peaches, or pears, pureed fruit, fruits cooked, baked, or strained w/out skin or seeds

Protein - cottage cheese, broiled, boiled, or baked beef, veal, chicken, turkey, tuna, eggs prepared any way except fried

Snacks/Sweets - cornstarch pudding, tapioca, rice pudding, custard, jello, fruit ices, plain cookies and cakes, clear jelly, honey, syrup, molasses, clear sweet dessert sauces, gum drops, hard candy

Fats - creamy peanut butter, butter, margarine, vegetable oils, bland gravy

Drinks - tea, carbonated beverages

Soups - bland broth, cream soup made from strained vegetables, pureed vegetable soup

Miscellaneous - mild catsup, mild spices in moderation vinegar

Low Fiber foods from the Oops Book

Cereal - semolina, puffed rice

Fruits - canned

Note: fat tends to slow the activity of the bowel

Constipating Foods from Bowel Mgt. Survey in PTN Newsletter Vol. 6, #1

Parents were pretty unanimous on what worsened constipation which is white flour products, crackers, pretzels, pasta, rice, bananas, and dairy products. Milk is normally a constipating item.

Constipating Foods From PTL Moms

From Teresa (Registered Dietician, Mom to Carolyn DS, IA)

Yogurt is not constipating nor does it have fiber so it is not a laxative food either. I do not think cheese is constipating. “Is cheese constipating? To me, is any food constipating? I believe it is, IF it REPLACES fiber containing foods that would help keep the stools looser/larger. I do not believe any particular foods actually reduce GI motility, the way some medications do.

From Angela (25, Chronic Pseudo-Obstruction)

I finally got rid of my logjam. I think I figured out what caused my problem, eating too many tangerines. I don't think my body can digest the membranes in citrus fruits.

Note: Stephen’s impaction was after eating lots of grapefruit and grapes. He wasn’t chewing very well at that time and recognizable pieces of grape skin were in his poops as well as grapefruit sections. These were both new foods for him.

Laxative Foods

Juices - prune, orange, apple

Nectars - pear, apricot, peach

Dried Fruits - prunes, raisins, figs

Fruits - pears, blueberries, strawberries, peaches, melons, raw apples, raw kiwi, pineapple

Canned fruits - apricots, plums, fruit cocktail

Cereal - oatmeal, barley, bran, bran flakes, shredded wheat, whole meal wheat, wheat germ, grapenut flakes

Mix 2 parts crushed psyllium seed, 1 part flax, and 1 part oat bran

Starches - peas, sweet potatoes?, cooked dried beans

Snacks - chocolate, nuts

Fried, fatty foods

Spicy foods (highly seasoned food) (ex. garlic)

Foods on Laxative Provoking Diet from Pena

Bread - bran, raisin, cornbread, rye, pumpernickel, whole wheat, bread stuffing, buckwheat, whole meal bread, pancakes, muffins

Cereals - cheerios, Ralston

Starches - wild rice, corn, beans (snap, lima, wax, black-eyed peas, lentils)

Vegetables - artichokes, broccoli, raw cabbage, raw carrots, cauliflower, collards, kale, mustard greens, dehydrated onions, peas, winter squash

Fruit - berries

Protein - milk and milk drinks, cheese, veal, chicken, turkey, fried eggs, (smoked or highly seasoned cold cuts (pepperoni), shrimp, lobster, clams, sharp cheese from not allowed on constipating diet)

Snacks/Sweets - cocoa, chocolate, popcorn, jams containing fruit, seeds, or skins, candy containing fruit or nuts, coconut, pies, cakes, tarts

Fats = nuts (peanuts, pecans, sunflower seeds, walnuts, macadamia, dried chestnuts), crunchy peanut butter, spicy salad dressing

Miscellaneous - garlic, pickles, olives (from not allowed on constipating diet)

Laxative Foods from Bowel Mgt. Survey in PTN Newsletter Vol. 6, #1

Foods that loosen the bowel include fruit (esp. melon, strawberries, and juices). Chocolate and vegetables also work for some. Fatty or fried foods loosened up some kids.

Laxative Foods from the Oops Book

Cocoa in any form such as chocolates, Cocoa-Pops, chocolate drinks, cakes, particularly Easter Eggs (imitation chocolate) etc.

Citrus fruit

Pure fruit juices

Prunes

Dried Fruit

Tomatoes

Spicy Sauces

Note: vegetable oil in the form of peanut butter, olive oil, etc. tend to lubricate the bowel

Laxative Foods from PTL

Black Licorice

Coffee

Caffeine in coffee and soda

Basically, foods high in water and sugar content (melons and berries) or foods high in water insoluble fiber (raisins, nectar juices, etc.)

From Susan (Adult, IA)

The constipation seems more manageable when I eat brown rice, baked potato with skin, or bulgar wheat every day, particularly if I'm also eating vegetables either raw or cooked from scratch (not frozen or canned). A day now and then doesn't make much difference, but several days in a row does seem to help.

Laxative Effect of Emulsifiers - Guar Gum, Xanthum, and Carrageneen

We discovered that acidic things like orange juice, tomatoes and spaghetti sauce have a laxative effect, as well as foods like cheap ice cream or chocolate. It turns out that it's the insoluble fibers in the emulsifiers that were causing the laxative effect - guar gum, xanthum and carrageneen.

High Fiber Foods from the Oops Book

Vegetables - cabbage, onion, spinach, celery, those w/ seeds and skins - ex. tomatoes, cucumber, etc.

Fruits - dried apricots, dates, pineapples, melons, oranges, cherries

Starches - whole grain pasta, brown rice, pizza

Snacks - fruit bars

Note: Too much fiber with insufficient fluid is as bad as not enough fiber

Foods which tend to Stimulate the Bowel Into Action

Prunes

From the Oops Book

Highly seasoned/spicy foods - soups, stews, sauces, gravies, etc.

Fried foods - hamburger meat, fish, eggs, chips

Strong cheeses

Smoked and canned meats

Pastries and Pies

Highly spiced desserts, cakes, and biscuits

Alcohol, strong tea, and coffee

Hot fresh bread

From The People’s Pharmacy Guide to Home and Herbal Remedies by Joe and Teresa Graedon

pg. 113 Ginger seems to be a natural stimulant of peristaltic action, and unlike laxatives, it is not habit-forming and it doesn’t lead to a lazy bowel.

Fiber

Fiber is the part of plants not digested by the body
NOTE: Some of the information below is now out of date since dietary fiber as reported on food labels has been redefined to include both soluble and insoluble fiber. In the past, dietary fiber was another name for insoluble fiber only. For food labels:

Total Carbohydrate = Simple Carbohydrates (sugars) + Complex Carbohydrates

Complex Carbohydrates = Starch + Total Dietary Fiber

Total Dietary Fiber = Soluble Fiber + Insoluble Fiber

 

From Food Finder by Elizabeth S. Hands, ESHA research

Scientists in the field are recommending 1-2.5g of fiber per 100 calories consumed. From page 11, 1-3 yr. olds need approximately 100 calories per kg of weight.

 

From About Fiber article from PTN Vol. 1, Number 2 (Lucille Beseler RN,MS

Water Soluble Fiber

Water soluble fiber has little effect on stool weight and hence is not appropriate treatment for constipation. The water retaining property makes this fiber an effective treatment for diarrhea. These foods slow the rate of food absorption and create a feeling of fullness. This may have an adverse effect on appropriate caloric intake in children.

Food Sources: all vegetables and fruits (esp. apples, citruses, strawberries, dried beans, and leafy greens), oats, and peanut butter.

Water Insoluble Fiber (Dietary)

These foods are not affected by digestion and pass out of the system almost completely intact. This makes the stool bulky and soft so elimination is easier. Water insoluble fiber aids in the treatment of constipation. At the same time, it may limit the absorption of minerals and vitamins. Vitamin supplements may be required.

Food Sources: Whole grains (wheat, whole-wheat flour, wheat bran), root and mature vegetables (corn, carrots, parsnips, potatoes), peas, dried beans (lentils, kidney beans), fruits w/ edible seeds (raspberries), apples, dried fruits and nuts.

 

From Be Good to Your Gut by Pat Baird, M.A., R.D.

Among canned fruits, pears and peaches are high fiber.

Soluble Fiber

Food Sources: Oat bran, rice bran, chick peas, dried beans, sesame seeds, all fruits and vegetables especially apples, plums, pears, and carrots

Insoluble Fiber (Dietary)

Works best for treating constipation

Food Sources: wheat bran, corn bran, whole grains, dried beans, canned beans, nuts and seeds, most fruits and vegetables esp. potatoes, broccoli, and parsnips

 

From Cooking Light Article by Rosie Schwartz, R.D.

Soluble Fiber

Soluble fibers swell when they are eaten. They form a gel-like structure that slows digestion. These are the fibers associated with increasing control of diabetics’ blood sugar levels and lowering blood cholesterols. Oat bran has the ability to lower LDLs (bad cholesterol) without affecting HDLS (good cholesterol). Oil in rice bran has the same cholesterol lowering ability as oat bran. Soy fiber combines the best of both worlds - it lowers cholesterol and stabilizes blood sugar while fighting constipation. Soy fiber is found in commercially made products or used in home-prepared foods.

Food Sources: - oat bran, rice bran, soy fiber, barley, brown rice

Insoluble Fiber (Dietary)

Although insoluble fibers don’t dissolve in water, they have the ability to retain water, soften stools, and thereby promote regularity. That is why eating more insoluble fiber without increasing the amount of water you drink won’t solve a constipation problem. These fibers speed up the contents’ passage through the intestines.

Food Source - soy fiber

 

From Prevention Magazine (Home Remedies)

Insoluble Fiber (Dietary)

Food Sources: - cooked dried beans, prunes, figs, raisins, popcorn, oatmeal, pears, and nuts.

Note: Many IA kids have problems w/ popcorn. Some find it irritates their prolapse. Others find it constipating even though it is high fiber – it literally plugs them up.

 

High Fiber Cereals from PTL

100% All Bran, 1/3 cup has 8.4 grams of fiber

Bran Chex and Corn Bran, 1/2 cup, have 4.1 and 4.4 grams

Fiber One cereal Cinna-Cluster Raisin Bran 7g of dietary fiber per cup Grinners by Uncle Toby (smiley faces that come in honey or strawberry flavor)Quaker Cinnamon Squares, and Cracklin' Oat Bran

High Fiber Snacks from PTN Newsletter Vol. 3, #4 Rye Crackers and Orange Juice

Bran Muffin and Grape Juice

Peanut Butter Cookies and Orange Grapefruit Juice

Pumpkin Bread and Cucumber Sticks

Peanut Butter and Honey on Wheat Toast with Grape Juice

Molasses Oatmeal Cookies and Cantaloupe Balls

Sesame Crackers and Strawberries

Crispy Rye Crackers and Pineapple Chunks

Oatmeal Raisin Cookies and Peach Slices

Graham Crackers with Apple Butter and Cranberry Juice

 

Soluble and Insoluble Fiber Content of Selected Foods

Source Durham County, NC Nutritionist

Food and Serving Size           Total Fiber      Insoluble         Soluble

Carrots (1/2 cup)                    3.2                   1.7                   1.5

Broccoli (1/2 cup)                  2.8                   1.5                   1.3

Asparagus (1/2 cup)               2.4                   2.0                   0.4

Corn (1/2 cup)                        1.9                   1.7                   0.2

Lettuce (1/2 cup)                    0.9                   0.7                   0.2

Pinto Beans (3/4 cup)             10.4                 7.1                   3.3

Kidney Beans (3/4 cup)          9.3                   7.0                   2.3

Lentils (1/4 cup)                     5.8                   5.2                   0.6

Black-eyed Peas (3/4 cup)     3.5                   3.1                   0.4

Orange (medium)                   1.9                   0.8                   1.1

Apple (small)                         2.8                   1.8                   1.0

Canned Peaches (1/2 cup)      1.9                   1.1                   0.8

Canned Pears (1/2 cup)          3.7                   2.9                   0.8

Banana (1/2)                           1.9                   1.4                   0.5

Canned Pineapple (1/2 cup)   2.1                   1.8                   0.3

Oat Bran (1 oz.)                      4.0                   2.0                   2.0

Oatmeal                                  2.5                   1.3                   1.2

Wheat Bran Cereal                 10                    9.0                   1.0

Cornflake Cereal                    0.5                   0.4                   0.1

Cheerios (1.25c)                     2.0                   1.0                   1.0

Whole Wheat Total (1 cup)   3.0                   3.0                   0

Fiber One (1/2 cup)                13.0                 12.0                 1.0

Popcorn (3 cups)                    1.9                   1.7                   0.2

Whole Wheat Toast (1 slice) 2.0                   1.7                   0.3

Baked Pot. w/ skin (1 med.)   2.0                   1.0                   1.0

Possible Sources of More Soluble and Insoluble Fiber Tables for Specific Foods

Note: I asked a friend who is a librarian to help me find tables that listed the amount of soluble and insoluble fiber in specific foods. Here is her response:

            I found with specific numbers was at http://cpmcnet.columbia.edu/texts/guide/hmg05_0002.html half way down the web page in Table 5.1.

            I saw mentions of commercial databases of nutritional information. A medical library might have access to one. Here’s a few notes on sites I saw in my search.

            The Journal of Food Composition and Analysis has a searchable database at www.academicpress.com/jfca . The articles are pretty nitty-gritty on specific food items, but you might find some useful information.

            Also, www.fao.org/infoods/ has a Food Composition Tables Directory. (Though don't bother loading the one by Professor Atwater from 1896.) The directory is mostly made up of bibliographical entries. If you find an item that looks good, we could try to get it for you. If you use something like Edit-Find-(on this page), remember to try "fibre" as well as "fiber". I didn't find anything obvious, but the information may be contained within some of the reports.

            http://www.nal.usda.gov/fnic/foodcomp/ The USDA has data sets on food composition. It might be worth contacting them and asking whether they have one covering soluble vs. insoluble fiber. I didn't find anything using their search engine, but perhaps they something that is not available electronically. They do have a link to other food composition sites http://www.nal.usda.gov/fnic/foodcomp/other_jmp.html. (I didn't spot anything in any of them.)

            I didn't find anything at http://www.nal.usda.gov/fnic/ .

Food Products for Treating Constipation

Mandarin Orange Slice

From Dan (Adult, IA)

I've discovered a product that has a laxative effect on me despite the fact that none of the ingredients make me think "laxative" - it could just be me. The product is Mandarin Orange Slice, which is, I believe, a product of PepsiCo. It seems to be gentle yet productive and it doesn't taste like medicine.

Juice Plus

Juice Plus products are from Woodbury Products 1-800-777-1111. 10oz of juice, which comes in 5 flavors, contains 10g of fiber. They will send free samples.

From Jane (Mom to Ty)

Juice Plus Fibre is

Nutra/Balance Products

PO Box 39077

Indianapolis, IN 46239

800-432-3134

There's also a drink we've bought for Ty from GNC stores. Carbonated spring water with fiber. They have unflavored and flavored. We mix it occasionally with other drinks.

From Monica (Mom to Conor

Juice Plus Fiber from Nutra/Balance products comes in three flavors: orange pineapple, grape and apple. I was told that apple is the most popular of the three. Dr. Pena told me that 1 bottle of Juice Plus Fiber is equal to 1 tablespoon of metamucil.

From Jackie (mom to Jordan, 2, HD)

Juice Plus Fibre has 10 grams of soluble fiber. Metamucil has 3.4 grams of fiber

Millers Bran

Millers Bran is also a good source of fiber. It is available at health food stores. Use one to two teaspoons a day. Can be sprinkled on cereal, mixed in recipes, or added to juice.

Flax Plus Cereal

From Babette (Mom to Micheal, HD, 2.5yrs.)

A multibran cereal called "Flax Plus" by Lifestream Natural Foods, P.O.Box 8110, Blaine, WA 98230. It is made from whole wheat, flax and barley, along with other ingredients. It has 5 grams of fiber per 3/4 cups of cereal. My kids like it!! I have used it in recipes that call for cereal bran flakes and it has not altered the taste of the recipe. I ran across this cereal in Trader Joe's, and to top it off it is inexpensive, only $1.99 for a 13 oz. box.

Malt Soup Extract

From Connie (Mom to Alexandra)

Malt soup extract is safe for long term use.......It is an OLD OLD OLD remedy for constipation. I learned about it by reading through one of my husband's pharmacy journals. I also spoke with our surgeon, who by the way is "older", and a pediatrician here in town who has been around for years. They both smiled when I mentioned it, stating, "well, the old natural ways are coming back around." Here is an excerpt from the article:

Bulk forming products are the recommended choice as initial therapy for most forms of constipation. Their action is to hold water in the stool, causing distention of the intestines and stimulation of normal peristalsis. These products most closely approximate the physiologic mechanism of evacuation and are considered the safest of laxatives. Products include psyllium seed, cellulose derivatives, polycarbophil, and malt soup extract.

I have found malt soup extract at a local micro-brewery -3 pounds of it for $10. A MAJOR savings compared to the local drug stores. Try the yellow pages under Beer or Beer Homebrewing Equipment. The quantity to be given is “teaspoons” and Connie recommends mixing it in food such as oatmeal. It is a THICK liquid. She never tasted it so doesn’t know if it is sweet or bitter.

Aloe Vera Juice

From Dawn (mom to Courtney)

Aloe vera juice can act like a softener. I am an Herbalife Distributor and we have a product similar to this that is called Herbal Aloe Drink. I have used it for several things including a softener, stomach upset, heartburn, etc.

From Mike (Dad of Brendan, HIA TOF/EA)

Bacterial and Candidal are naturally present in the intestines. Candida lives and thrives on sugars. Too much sugar and the Candida gets the upper hand and causes very loose movements. Yoghurt with live culture can restore the balance. Too much yogurt can cause constipation effects. The Yeast Connection by William G Crook,M.D. does quite a good job of explaining a lot of the problems such as diarrhea, bloating and constipation and the relationship with sugars. We had good success with the diets.

Smooth Move Tea

From Sue (Mom to Emily)

Our local grocery store, as well as our local health food store sells a tea by traditional medicinals called "smooth move". It works wonders, has just a little bit of senna in it as well as other known motility boosters and stool softeners.

Water

Babette (mom to Michael; hd)

In regards to the fight with constipation here are a few things that we've found to be successful. LOTS of raw fruits and veggies. Whole grains. Metamucil wafers, Michael likes the apple/cinnamon flavor. I give him at least two per day, and when we're on a down hill slide we up it to six + per day. But the most effective thing that I have found with him is to drink water, not juice. In the last 4 weeks I have increased his water intake to 1 1/2 qts. per day (he is 33 lbs.) and WHAT A DIFFERENCE IT HAS MADE!!!!! I have been totally amazed!!! On this note, I'd like to recommend a book titled "Your Bodies Many Cries For Water" written by F. Batmanghelidj, M.D., also here is the web site www.watercure.com With just a few simple modifications to our water intake we are seeing AMAZING results!

Update:

Well, I have some WONDERFUL news to share regarding the addition of water. Michael just turned 5 the end of Oct. In Sept. we started increasing his water consumption and have seen truly amazing results!! He is now drinking approx. 40-45 ounces daily. I have encouraged him to sit on the pot each time he feels like he needs to pee, and lo and behold he poops too!! :) In Sept. when we started this, he weighed 33 lbs. in the 3 months we've been at it, he has gained 3 lbs. and has grown 1/2 an inch. When he first wakes up in the morning, before breakfast I have him drink about 6-8 ounces. Then I lay off the water until about an hour after he has eaten. I only push water between meals, and I greatly discourage food between meals. (But he's not hungry, when he's drinking all that water.) Also, I discourage him to drink if meal time is within the next half hour. We make a game of it. Michael is very competitive, so racing is always a winner with him. Also, I bribe a lot, i.e., "after we drink this water, I will go bike riding with you" or skating or play legos or any other thing that might entice him. Also, I buy the small water bottles, so he isn't overwhelmed with the large ones. If he sees everyone else drinking, he doesn't balk at it. From what I understand, it is better not to drink at meal times. This is because the stomach has to empty of fluid before it can digest solids. I have noticed that when you drink between meals, you really aren't even thirsty at mealtime. Also, I try to get all the water in before 4 p.m. That way he doesn't have any problems in the night. One more thing, with the increase of water, he, as with the rest of us, noticed an increase in leg cramps. I increased our salt consumption and that seems to have done the trick. I made these changes in my families water consumption after reading a book entitled "Your Bodies Many Cries for Water". I would HIGHLY recommend this to all of you. My husband who has had knee problems, surgery, pt etc.. has seen remarkable improvement in his knee since he has been drinking water (3 qts. daily). It's just amazing!!! The web site for this Dr. that wrote the book is www.watercure.com . One other thing, after speaking with this Dr., at his advice I started supplementing folic acid, zinc, B6 and B12. A deficiency in these can impair the function of neurotransmitters. Therefore, I can't say 100% that simply drinking water has gotten Michael to poop. Although without the water, I honestly don't think we'd be seeing the results we are.

Note: at 36lbs. he also has 6-8 metamucil wafers a day

Serving and Baking Tips

Book(s)

How To Get Your Kid To Eat...But Not Too Much by Ellyn Satter

Serving Dried Prunes

We give Eddie the dried prunes. When he was smaller I called them prunes and he wouldn't eat them!! So I gave up for awhile. Now - I call them "special treats" and wouldn't you know it he usually gobbles them right up!! go figure.... I've been buying 'gourmet' prunes. Not the kind that require or suggest refrigeration after opening. Brand name is Mariani and I buy them at Costco (the big warehouse stores PACE, Sam's Club, etc.) They're very soft and sweet and come in a resealable bag. I make a little game out of it .. one for me and one for you. 2 a day seem to do the trick.

Baking with Wheat Germ

From Liz (mom to Noah, IA)

When baking, you can substitute wheat germ for one/fourth of the flour and usually get the same results.

From Jane D. (Ty's mom)

I got a little cookbook from Hodgson Mills, full of recipes for unprocessed wheat bran and untoasted wheat germ. The address is Hodgson Mill, Inc., PO Box 430 Teutopolis, IL 62467  (217) 347-0105

Serving Dried Prunes, Prune Juice,

Susan (adult, IA)

My parents created a drink which they called NeeNeeCola. It was basically prune juice with a little fizz added (ginger ale, coke, etc.). I was thrilled to have a drink named after me (what did I know!), and since I was rarely allowed to have regular ginger ale or coke, etc., it was a real treat to drink.(Still is- tastes a little like Dr. Pepper.) NeeNee was my nickname -- you can steal the recipe and call it whatever you want.

Sometimes I make myself a fruit shake in the blender with prune juice (or baby prunes, or stewed prunes) and vanilla yogurt. It's a change anyway.

Once in a while I get creative and stew prunes with cinnamon, oranges, nutmeg or whatever I feel like experimenting with. They're pretty good with ice cream or vanilla yogurt on them.

“Fruit Juice Blend” consists of equal parts of prune juice, apricot nectar and water, some people add Karo syrup in the same amount (for children over 1 yr.)

Serving and Cooking Juice Plus

From Anne (mom to Ben, HD)

I have a recipe for sweet & sour chicken that needs juice: Yep! Juice Plus is the juice I use for that. Have made juice popsicles. Also, Jello Jigglers with JuicePlus.

Baking with and Serving Oatmeal

Replace up to 1/3 of the flour with quick or old fashioned oats every time you bake. Use oats instead of bread or cracker crumbs in your favorite meatloaf recipe. Add a topping to oatmeal such as low fat yogurt, dried fruits, fresh fruits, spices (ex. apple pie, pumpkin pie), brown sugar, honey, maple syrup, and applesauce. Try cooking oatmeal in 1/2 fruit juice and 1/2 oatmeal.

Baking with Sweet Potatoes

From Anne (Michael, HIA, bladderneck fistula 2.5yrs)

Sweet potatoes and yams have a VERY HIGH FIBER content! I have a wonderful recipe for pumpkin bread that I substitute yams for (I mash with the skins for extra fiber (but have used the cans when in a pinch or when really lazy). (I checked this. Canned pumpkin has 2.3g of fiber per 1/2c, canned sweet potato has 2.8, and fresh baked and peeled sweet potato has 3.3. No telling how much more you get w/ the peel!)

 

Getting Water into Kids Tips

Amount of Water Required

From Teresa (Registered Dietician, mom to Caroline, DS and LIA)

Note: These guidelines are for normal kids. Kids eating extra fiber would need extra water.

Child's weight                                     Total fluids needed in 24 hrs (cups)

            7 lbs                                                                            2

            12                                                                                3

            21                                                                                5

            26                                                                                6

            36                                                                                7

            44                                                                                8

            63                                                                                9.5

            99                                                                                10.5

            119                                                                              10.5

I wonder if this includes all the water included in foods, etc.? 10.5 cups seems like a lot for an adult.

Straws that Play Music/Make Sounds

From Audean (Grandma to Taylor, HIA)

The Disney Store, and Toys R Us have straws that have either Disney characters on them or trains, fire trucks, etc. These straws play music, one of them I had played the lion king, one made the fire engine sound and the train one sounded just like a train. They wouldn't play until the fluid came thru.

Alternative Sources of Liquid, Fun Serving Suggestions

From Liz (mom to Noah, IA)

Fill a spray bottle with water or juice, and squirt, the kids love it, it's fun and they love to lap it up.

Other tips: shaved ice, flavored, or crushed ice, kind of like snow cones. Popsicles, jello, soup or broth, fruits have lots of juice in them, etc. Fruit juice ice cubes on sticks are fun and take longer to melt than popsicles. Letting older kids make their own is very self satisfying.

 

Dealing with Diarrhea

Yogurt, Pedialyte Liquid/Pops

From Joan (Mom to Kim, 30, total colon HD)

We had plenty of diarrhea for years. First of all, yogurt, buttermilk, anything with acidophilus in it is GREAT. It has the good bacteria in it that helps fight the bad bacteria in the intestinal tract. Next item is Pedialyte. Gatorade is good, but Pedialyte is better and specially designed for kids and babies with diarrhea/electrolyte disturbances. It has all the elements in it that prevent dehydration (from the diarrhea). It makes them feel a whole lot better and, as a matter of fact, whenever Kim has a problem (and she is almost 30 years old), she still goes out and buys Pedialyte. She actually LIKES the stuff. It always makes her feel better and stronger when she is completely "washed out."

Note 1: Pedialyte also comes in freeze pops

Note 2: According to Pete Bauer Tablets of acidophilus are available at drug stores Dino-acidophilus is dinosaur shaped.

Note 3: The yogurt must be yogurt with live active cultures. It should say this on the container. Basically, the yogurts with the fruit on the bottom (as well as plain yogurt) are the ones w/ live cultures.

From the Oops Book

Yogurt without fruit given once a day may help to reduce the diarrhea commonly caused by antibiotics, particularly the penicillin type. Give the child Cellulone, or other fiber, daily whenever he is on antibiotics. For best results, the fiber should be given with the minimum allowable fluid, and with food such as a sandwich. Give no other fluids for 1/2 hr. before or after the food. This helps to absorb the extra fluid caused by antibiotics.

From PTN Newsletter Vol. 4, #2

Bacid or Lactaid can help replace some of the “good” bacteria lost during bouts of diarrhea (often caused by antibiotics).

Note: There was one 5mo. old baby who seemed to get diarrhea and gas from infant acidophilus. This discomfort resulted in excessive crying and poor napping and eating.

 

Acetone Breath

From Duana (Mom of Ian,, 0, HIA.ca)

The smell on Noah's breath is very likely the smell of ketones, which are the by-product of the body breaking down substances other than carbohydrates (ie proteins) for calorie requirements. Noah is only taking breastmilk, and not food, correct? He's likely not taking in enough calories for his energy requirements, and the result is the smell you're detecting. Ketones are very similar in smell (and composition) to the acetone in nail polish remover, and are the usual finding in kids (and adults) who have been vomiting and/or are dehydrated or lacking in calories. It can be tested by a simple urine test, using a simple dipstick.. or better still, the urine can be sent to the lab for testing. It doesn't mean much in terms of recuperating from the virus or whatever illness he has now...it doesn't predict outcome, but the presence of ketones just tells you he's down in calories and/or fluid right now. Hope he's feeling better soon.

Preventing/Getting Rid of Yeast Infections

From Cynthia (Mommy to Alec, age 5, HIA.com)

If your child has to be on antibiotics, try all the yeast-reducing tricks:

- yogurt

- acidophilus supplements (health food stores have)

- oral Mycelex (can't remember what it's called, but they give it to cancer patients to control

yeast build up from chemotherapy)

- all the constipating foods you've learned to avoid

- also, if your doc OKs, a dash (I mean 1/8 tsp!) of immodium was helpful for Alec

From Jeana (mommy of Grayson - 19 mos., VACTERL)

We have had very good luck treating ear infections with Ceclor (or Ceflaclor - sp?) Grayson is very prone to diarrhea with antibiotics, so we watch the results closely. We have to stay away from Amoxicillin and

haven't tried Septra.

From Jennie (Mom to Julia, HD, 2 1/2.nz)

Like Jeana, we've had success treating Julia's ear infections with Ceclor. Sometimes, we noticed that her motions became a little harder than usual with the Ceclor, but we never had any diarrhea. Have you tried antibiotic drops? Julia also has tubes in her ears and although we haven't had any ear infections since they were inserted, our surgeon said we could expect that if she did develop an infection it would probably respond to drops without the need for oral antibiotics. Just curious whether this actually works?

 

Feeding Tips

From the Oops Book

Do not substitute a milk drink for a refused meal. Milk in excessive amounts will prevent hunger.

If a child stops eating food that has to be chewed, he may require nose drops to clear his nose.

Eating New Foods

A fussy child, who is never hungry, will never try different foods.

New foods should be introduced in minute quantities (ex. one pea) along with the food the child routinely eats. Lightly coat the TIP of a spoon or fork with the food to be tasted. Even if he keeps his lips tightly together, providing the food touches his lips, he will taste it. Parents should not make too big a fuss when he does taste and hopefully eat new foods. This only continues his manipulative power. Sometimes it is better to pretend not to notice at all. There will be some foods that he genuinely will not like, just as with adults.

Helpful Hints

Many children who have a handicap are masters of manipulation. Watch for this in everything they do including getting parents to argue at the table so the child can avoid eating his meal. He may then cry later because he is hungry and will get whatever he wants. Young children require surprisingly little food in the 3-5 year age group.

Parents should reward themselves every time they:

Do NOT tell the child to “Hurry up and eat your meal”

Do NOT feed the child when he refuses to eat

Do NOT discuss his eating patterns in front of him

Do NOT let him see his parents arguing

Do remove his plate at the same time as other plates are removed

Source Unknown

Parents are responsible for when, where, and what foods are offered to a child. The child is responsible for whether or how much he eats.

Recommended Resources

Feed Me I'm Yours, Feeding with Love and Good Sense by Ellyn Satir(?) - recommended by Marti

Laxative Information

Managing with Diet and Medications

From Management of Anorectal Malformations by Kathie Guardina, PTN Newsletter, vol. 2, #3

Many children can be managed by diet, others with diet and medication.

Bowel Management Survey in PTN

Note from Karen B.

The bowel mgt. survey was in the Vol. 6, Number 2 newsletter and had 15 of 27 kids managing w/ diet and medication (senokot, mineral oil, metamucil, MoM, and citrucel). I looked over the bowel management surveys in which parents responded that they were using a combination of diet and medication, but no enemas. Many of the kids were still under the age of 3, so the regime was used to keep them pooping, but not continent, as they were still in diapers anyway. Some of the others were those who had low defects, in which the chance of voluntary bowel movements were pretty high to begin with. For others, they had a tendency for loose stools, and Immodium and a low fat diet helped to keep them clean.

From Bonnie  (Mom to Amy, 7yrs, VATER)

I made a deliberate decision not to try and control Amy's diet. First of all, I'd worked to hard to teach her to eat after her multiple surgeries to create an "esophagus" for her. So every bite she put in her mouth was a victory to me. But I also realized that diet is so terribly hard to control - esp. as the get older and are away from you more - visiting friends, family, etc. So if you can find a "medication" combo that will work for your child - count your blessings. All of this is bowel management. The biggest lesson I leaned while visiting Dr. Pena is that "management' is the key word. You and your child, when he is old enough, will always be managing this. And it will always be changing - as they grow and their activity levels and diet change. I have to make adjustments in Amy's every summer when she is home all day. She drinks more - and that means she is more prone to an accident. Don't get discouraged. And don't pressure yourself to find the one perfect method - it doesn't exist. I looked for it for a long time. I thought that if someone could just tell me what to do that would be the end of it. Sorry, you have to find the right combo for your child at this time and while that's the pits - maybe knowing that it is trial and error for all of us will help keep you from getting discouraged.

Food Restrictions

From Kymmi (mom to Taylor, 11 Mo., HIA, Cloaca)

I talked to Dr. Pena and he told me not to restrict her in any way in regards to table food..her body will adjust and from there we can account for foods and how they react with her body..but we should not eliminate any foods from her diet even if they cause constipation or act as a laxative. His goal is that she should never in her life restrict herself from any foods, rather then adjust her intake of different ones .

Laxatives Classifications/Types

From PTN

From Bowel Mgt. Medication by Michelle Assoian (former head of PTN) in PTN Spring ‘93 Issue,

            Michelle called manufacturers herself. She found out that there aren’t too many studies done on long-term usage because drug companies define long-term as 6 months. All drugs are approved for a specific usage and we are not using these drugs as intended. The FDA only requests studies pertaining to the applied usage and she did not come across a single company who considered their product as part of a long-term bowel mgt. program. Most companies were genuinely interested (particularly Fleet and Senokot) in our children. They were very responsive, but couldn’t offer much in the way of tangible evidence about harmful side effects or long-term usage. The information doesn’t exist. Many manufacturers offer private labeling (product resold under store brand). In addition, many products are virtually identical - as long as the ingredients are the same and in the same basic order the products are clones. The goal should be to use the least intensive drug that has the desired result. Many brands use combinations of “drugs” so you might not need everything in a particular product.

            When you compare products and ingredients please understand that the “active” ingredient in each category can be different. For example, under the stimulant heading the active ingredient for Fleet is bisacodyl while the active ingredient for Senokot is senna, yet they both do basically the same thing and achieve the same end result.

Bulk forming laxatives - these laxatives are not digested; they absorb liquid and swell to form a soft, bulky stool. Either made of natural or man-made fiber. Certain types of products containing psyllium may also be used to treat diarrhea.

Examples: Metamucil, Citrucel, Fiberall, Naturacil, Perdiem, Serutan, Malt Suprex

 

Stool Softeners - encourages bowel movements by helping to mix liquids into the stool and prevents hard, dry stool. Doesn’t “cause” a bowel movement as much as it really “allows” one to happen.

Examples: Colace, Correctol, Dialose, Feen-a-mint, Peri-Colace

 

Lubricant - coats the bowel and stool with a waterproof film, keeping stool moist and soft.

Examples: Mineral oil, glycerine

 

Hyperosmotic laxatives (saline) - this type draws liquid into the bowel from surrounding body tissue. It increases stool mass and acts rapidly. It is not used for long-term usage. Much smaller doses are used as antacids.

Examples: Phillips’ Milk of Magnesia, Epsom salts, Haley’s MO, Citroma

 

Stimulant laxatives (Contact laxatives) - encourages bowel movement by increasing peristalsis. Its action occurs on contact with the colon, where it stimulates sensory nerve endings to promote muscle contractions that move the stool.

Examples: Senokot, Ex-Lax, Fleet (Bisacodyl), Dulcolax, Medilax, Gentle Nature, Deficol, Carter’s Little Pills

There is a bunch more info on medications that cause constipation - i.e. relieve diarrhea. Names I recognize are Fibercon, Immodium, and the following 2 which are especially worth noting.

Aluminum powder, hydrated - used as an antacid, but in large doses causes constipation

Examples = Mylanta, Phillips’ Milk of Magnesia

 

Pectin - a plant extract used to make jellies gel. Dries up the stool.

Examples - Kaopectate, Donnagel

Books to Read - Handbook of Non-prescription Drugs, The Essential Guide to Non-prescription Drugs, Physicians Desk Reference, etc.

 

Laxative and Antidiarrheal Lecture and Resulting Q&As

From Rosann (Ph.D.. Pharmacology and Toxicology, husband is as well)

I am a pharmacologist - Ph.D. from Michigan State University, Department of Pharmacology and Toxicology. Ditto for my spouse. I know a lot about drugs, but even more important, I know where to go for accurate information. Because I have a research degree, I don't have clinical training or experience, but I have friends who are physicians, and Paul works in the Department of Pediatrics here at the University of Nebraska Medical Center.

Posted to PTL on 11/21/97

I've attached the outline of part of a lecture I just gave on Wednesday for an undergraduate course entitled "Common Medicines". I included both the antidiarrheals and the laxatives. It should help clarify how the different types of drugs work. I'm not an expert in this area, but I am a pharmacologist and will be happy try to answer questions.

 

IV. Antidiarrheals

            A. Diarrhea - loose and watery stools caused by a variety of factors (microorganisms, diet change,           allergy, etc.).

            B. Non-pharmacological treatment

                        1. Rest GI tract

                        2. Fluids

                        3. Bananas, rice, applesauce, toast

            C. Antidiarrheal medications

                        1. Absorbents - minimally effective

                                    a. Kaolin, pectin, attapulgite, bismuth compounds

                                    b. Kaopectate, Pepto-Bismol, Donnagel

                        2. Loperamide - opiate, slows gut motility

                        3. Polycarbophil - improves stool consistency by absorbing water

 

V. Laxatives

            A. Constipation - decreased elimination of fecal material, resulting in the passage of dry, hard         stools; NOT defined by frequency

                        1. Legitimate - colitis, poor motility, drugs, cancer, other

                        2. Perceived - usually resolved by increased intake of water and fiber, increased exercise

            B. Types of laxatives

                        1. Bulk-forming laxatives

                                    a. Remain in intestine and cause distension, thereby stimulating peristalsis

                                    b. Examples include bran, polycarbophil

                        2. Stimulant laxatives

                                    a. Cause irritation of the GI tract to stimulate peristalsis

                                    b. Chronic use can cause dependence - i.e. it takes increasingly higher doses to                                     produce the desired effect

                                    c. Examples include phenolthalein (Ex-Lax) and senna (Senokot)

                        3. Saline cathartics

                                    a. Non-absorbable salts draw water into the GI tract

                                    b. Stool remains soft, distension stimulates peristalsis

                                    c. Example is Mg(OH)2 (Milk of Magnesia)

                        4. Stool softeners (emollients)

                                    a. Surfactants that allow mixing of water into fecal material

                                    b. Can increase absorption and toxicity of other drugs

                                    c. Example is docusate (Colace)

                        5. Lubricant laxatives

                                    a. Coats stool to decrease water absorption & facilitate movement through colon

                                    b. Can interfere with nutrient absorption

                                    c. Example - Haley's MO (mineral oil)

 

Teresa (Registered Dietician, mom to Caroline, DS and LIA) responded to the outline w/ questions. Questions below are from Teresa. Answers are from Rosann.

Q1. Your info called MoM a “non-absorbable salt”. So why do people w/ kidney problems show an elevated serum magnesium when using MoM? I have even had patients on tube feedings with apparently normal kidney function show elevated magnesiums which were resolved upon discontinuing MoM use. To me, this indicates some of the magnesium IS being absorbed.

A1. I looked this up in Goodman and Gilman (the pharmacologist’s bible), and here is a quote: “UP to 20% of the salt is absorbed; this may contribute sufficient Mg2+ to cause toxicity in patients with impaired renal function.” So, you are right. Most of the MoM stays in the gut to exert its laxative effect, but not all. MoM is an osmotic laxative that stimulates the GI tract to empty because all that water fills it up - full GI tract stimulates motility.

Q2. Why don’t the books classify lactulose as a laxative now that so many people are using it as such? I realize the exact mechanism of action is a bit different than any of the laxatives you described (more like a non-absorbable sugar). We could try sugar-free candies I guess.

A2. G&G classify lactulose (a non-digestible disaccharide (sugar) composed of galactose and fructose) as an osmotic laxative. Lacutlose comes as a sweet syrup. It works primarily by drawing water into the GI tract to produce soft stools (which are easier to pass). Other osmotic laxatives include glycerin, sorbitol, mannitol and polyethylene glycol in an isotonic electrolyte solution (Golytely). Glycerin is only administered rectally, sorbitol and mannitol can be administered rectally or orally; all of these draw water into the GI tract to soften stools. Golytely is a polyethylene glycol, a non-absorbable liquid. Golytely, being isotonic, does not draw in water, but it is not absorbed either. Just flows right through, as most of us have observed.

From me in a different note but fits well here

Q1. Do all non-absorbable sugars work the same? Do you know if there are any significant differences in them?

A1. They all work as osmotic laxatives by virtue of their inability to be absorbed. The only major difference I could find was that lactulose helps prevent absorption of ammonia, so it is used for patients with liver disease where the blood ammonia level is elevated. Don't know about relative gas production.  My opinion is that *anything* that is non-absorbable is likely to produce gas. I think that the osmotic laxatives like lactulose are probably fine. I'm not sure I'd want to use MoM unless necessary, though. For people who tend to be constipated, increased dietary intake of fiber is the treatment of choice, whether it is by eating All-Bran or taking Metamucil. As I've mention on the list, some types of fiber work well for Carl (oat), and some don't (wheat).

Prunes work to keep the stool soft so she doesn’t think tolerance develops. Sorbitol and lactulose are mild. Sodium and Magnesium laxatives (ex. MoM) are more harsh than the sugars. Senna is both an osmotic laxative (draws water into the GI tract) to keep stools soft and a stimulant laxative - i.e. it stimulates GI motility. However, the GI tract can develop tolerance to the stimulatory effect of Sennakot. (per her pediatric GI)

Q1 Is MoM safe for long term use? Can you develop a tolerance to it?

A1. If you mean "safe" as far as not associated with cancer or other dread diseases, I think that it is safe (my opinion based on what I've read). I don’t know if you can develop a tolerance to MoM.

Q2. Are laxatives addictive? Is babylax?

A2. Laxatives are not addictive in the pharmacological sense - don't ever recall hearing that people crave them :) ! However, people can become dependent on them by virtue of creating a "lazy colon." In the case of IA kids, they are *born* with pseudo lazy colon, i.e., things just don't move along normally. So, I think the risk of making it worse is minimal through the use of glycerin suppositories. Also, the pediatric GI doc we saw here thought glycerin was pretty benign, and was much more comfortable with that approach than with Sennakot.

Q3. Is the poop in the rectum all along - i.e.. it moves through the colon and sits in the rectum waiting for the signal?

A3. OK, here's my understanding of it. In the colon, most of the contractions serve to "knead" the stool to facilitate absorption of water. These kind of contractions don't result in any net movement of stool along the GI tract. Occasionally, (1-3 times per day, normally), the colon undergoes what is termed a "mass movement" where the stool is propelled forward by a sustained contraction. The sensation of "needing to go" occurs when it reaches the rectum. The external sphincter is under voluntary control, so people wait for an appropriate time and place to evacuate. When the external sphincter is relaxed, then evacuation takes place. In IA kids, the mass movements might not occur as often, as strongly, or push the stool down into the rectum - I'm just speculating here, because I don't really know. Anyway, I think that the solid glycerin suppository mimics the effect of stool in the rectum, i.e., it imitates a mass movement.

Q4. Kathie doesn't want us to use the babylax if we can avoid it. She prefers laxatives. Do you know why?

A4. No, I don't know why. Paul and I went through a lot of agony, trying to decide what to do for Carl. We just don't agree with the laxative approach, so we disregarded their advice. Dr. Pena is not happy with our management routine, but we are. I am confident that we are not doing anything that would harm Carl. If we needed to use oral laxatives to keep Carl from getting blocked, we certainly would, but would try something milder, like lactulose, before trying a stimulant laxative. IMHO, stimulant laxatives should be used when all else fails. BUT, if the child needs it, it should be used. Just a good conservative approach to getting the necessary result.

 

            Carl is 4, HIA, gets a solid babylax every morning and has since he was 1. He has a little leakage before the big poop and later 1-2 follow-up poops. She doesn’t think one small poop is a problem. Karl drinks 6oz. of apricot nectar a day but can eat pretty freely without getting constipated. She thinks Karl just needs help getting the poop out. Bowel mgt. (in Roseann’s mind) has two components - keeping the stool soft enough for the child to pass on his own and getting all the poop out of the rectum. If the child can't do the latter, the alternative is enemas, with the dietary goal to keep the stool hard. Although it is true that babylax can be used to treat constipation, Carl has never been constipated. In his case, she think it works by mimicking a mass movement.

             I think that regular use of babylax will *increase* the physical ability for IA kids to feel when they need to poop, and to be physically able to push the poop out. It's muscle learning. I have *no* proof for this, but I think that the large poops that Carl has had every morning for the past 3 years have facilitated innervation and hence, function. Nerves are funny things, and no one really knows how organs are innervated developmentally, but the peripheral nerves do grow, and there is some evidence that supply increases in response to demand. In other words, if there is a need for innervation, the nerve grows. This is all still hypothetical (meaning not proven), but it makes sense. You know those kids with refractory epilepsy who have to have half of their brain removed? Well, if done as a child, much of their normal function returns, whereas an adult cannot compensate. The brain is somewhat plastic, and can make physical connections when it is necessary. So, Paul and I have reasoned that the same thing is true about the peripheral nervous system. If we pattern train the bowel to evacuate fully every day, then maybe it will "learn" how to go on its own. But the innervation needs to be there. Sorry for such a long, speculative explanation, with no data.

 

From AHFS (American Hospital Formulary Service) Drug Information 97

From Teresa (Registered Dietician, mom to Caroline, LIA and DS)

AHFS Drug Information is a book updated yearly that pharmacists use for one of their information sources. This is NOT the PDR; that is put out by the drug companies. My personal comments will appear in [brackets].

Cathartics and Laxatives General Statement

            Cathartic, laxative and purgative are terms describing drugs that promote evacuation of the intestine; the difference between the terms is largely one of degree. Cathartic or purgative are interchangeable terms describing drugs that promote rapid evacuation of the intestine and noticeable alteration of stool consistency. The evacuant action of a laxative is less pronounced, but large doses of laxatives may produce catharsis or purgation.

Cautions [Generally for all laxatives]

            When used in appropriate dosages for a limited period of time (one week or less), most laxatives are relatively free from adverse effects such as diarrhea, GI irritation, and fluid and electrolyte depletion. Stimulant laxatives are the laxatives most likely to produce these adverse effects. Chronic use or overdose of laxatives may produce persistent diarrhea, hypokalemia [low potassium], loss of essential nutritional factors, and dehydration. Long-term use of laxatives, especially stimulant laxatives, has been associated with laxative dependence, chronic constipation, and loss of normal bowel function.

[Folks, you can take the above info on long-term use with a note of caution; with our special kids it is likely that many of them will need some type of laxative or some other way to manage their BM's for life. *BUT* the point is well taken on the STIMULANT laxatives: Aloe, Cascara Sagrada, Frangula, Senna, Castor Oil, Dehydrocholic Acid, Bisacodyl, Phenolphthalein.]

            Because magnesium, potassium, or sodium accumulation may occur in patients with renal disease, laxative products containing .... these should be used only by these patients under the supervision of a physician who should monitor electrolytes....All laxatives are contraindicated in patients with acute abdominal pain, nausea, vomiting, or other symptoms of appendicitis or undiagnosed abdominal pain. Stimulant laxatives are contraindicated in patients with intestinal obstruction. Bulk-forming laxatives [Methylcellulose, Karaya (Sterculia Gum), Malt Soup Extract, Psyllium Preparations (Metamucil, etc), Carboxymethylcellulose] are NOT useful when prompt or thorough bowel evacuation is necessary (e.g. poisonings, radiologic examinations, bowel surgery) and are contraindicated in patients with partial obstruction of the bowel or dysphagia [difficulty swallowing]. Patients should consult their physicians if sudden changes in bowel habits persist for longer than 2 weeks or if use of a laxative for one week has no effect.

 

From “How do we treat constipation?” - Web site of UVA Medical School

Stephen M. Borowitz, M.D., Division of Pediatric Gastroenterology and Nutrition, UVA

Reprinted with permission

            Treating chronic constipation involves 3 steps - emptying the large intestine, establishing regular bowel movements, and eliminating the pain associated w/ passing bowel movements. (Note: this site is focused on normal kids who develop chronic constipation from painful poops due to fissures, etc.)

            Administering an enema pushes fluid into the rectum which softens the stool in the rectum and stretches the rectum giving the child a tremendous urge to pass a bowel movement. Almost all enemas consist mostly of water with something else mixed in to keep the water inside the intestine. The most commonly used enemas are:

Fleet’s Phosphosoda enemas contain water and the salt sodium-phosphate. The phosphate is not absorbed in the lower intestine and thus keeps the water from the enema in the intestine w/ it.

Soap suds enemas contain water with a small amount of soap. The soap is mildly irritating and stimulates the lower intestine to secrete water and salt.

Milk and molasses enemas contain milk sugars and proteins as well as molasses. None of these are absorbed in the lower intestine and thus keep the water from the enema in the intestine.

 

            By administering a suppository, we irritate the bottom of the intestine, causing it to contract (squeeze) and push out a bowel movement. Some suppositories also stimulate the intestine to secrete salt and water softening the stool in the rectum and making it easier to push out. Commonly used suppositories are Glycerine, Ducolax, and BabyLax.

            When we administer very powerful laxatives to “flush out” the lower intestine, we are generally keeping lots and lots of water in the intestine, softening any stool in the lower intestine, and causing diarrhea. Examples are Magnesium citrate and Golytely or Colyte. Virtually any laxative preparation will be effective if it is given in high enough doses. Most of the commonly employed laxatives work by keeping large amounts of water in the intestinal tract, thus making the bowel movement very soft and keeping the stool moving quickly through the large intestine.

Milk of Magnesia and Haley’s M.O. - these laxatives contain magnesium salts that are very poorly absorbed by the intestinal tract. As a result, the magnesium remains in the intestine and keeps water with it.

Sennakot and Fletcher’s Castoria - these laxatives contain the natural plant derivative senna. Senna stimulates the intestine to secrete salt and water so that there is much more water in the stool. Senna also is a mild irritant, causing the lower intestine to contract (squeeze).

Mineral Oil - mineral oil is a non-absorbable oil that is digested by bacteria living in the large intestine. Some of the by-products of this digestion stimulate the intestine to secrete salt and water. This results in there being much more water in the stool. When taking high dosages of mineral oil, many children will experience some orange seepage as well as some itching at their anus.

Metamucil, Citrucel, Fibercon, Fiberall, and Maltsupex - are all fiber based laxatives. Fiber laxatives contain complex sugars that are not digested or absorbed in the intestine. As a result, the sugars remain in the intestine and keep water with them. In high doses, fiber laxatives often cause bloating and gas.

In high enough doses, many foods (esp. fruits and juices) are very effective laxatives however it is often difficult to eat or drink enough of these foods day in and day out to be an effective long term treatment. Much like fiber, prunes contain complex sugars that are not digested or absorbed in the intestine. As with fiber laxatives, high doses of prunes often produce bloating and gas.

            No studies have ever CONVINCINGLY (emphasis mine) demonstrated that any of the laxatives described above lose their effectiveness over time. Since nearly all laxatives work by keeping large amounts of water in the stool, they can be used for very prolonged periods of time without significant risk. There is no evidence that any of the laxatives described above can result in dependency with chronic usage.

E-Mail From Stephen M. Borowitz, M.D., Division of Pediatric Gastroenterology and Nutrition, UVA

We follow a number of children with imperforate anus in our clinic in conjunction with our pediatric surgeons. Many of them remain on laxatives for extended periods. There is a fair amount of data to suggest that the long-term usage of most of the available laxatives is very, very safe. We have experience using Milk of Magnesia for many years in children with cerebral palsy or other neurological problems. There is no evidence that there are any side effects . . . remember Milk of Mag is an osmotic laxative . . . that is, it works by keeping water in the intestine, much like sorbitol, fiber, etc. There are also good data in animals indicating that long-term usage of senna in high doses causes no problems. This is the active ingredient in Senokot, Fletcher's Castoria, and the new formulation of Ex-Lax. As for the best longterm choice . . . if you can manage with fiber, sorbitol, or juices (like prune juice), that is great, however many children won't take enough of these to be effective, and so, we generally use Milk of Magnesia.

 

From Consumer Reports Drug Book - pg. 980-985

‘97 United States Pharmacopeial Convention, Inc.

Bulk-forming laxatives - Malt Soup Extract, Methycellulose, Psyllium

Hyperosmotic laxatives - Lactulose

            Saline type - Mg Citrate, Mg Hydroxide (MoM), Mg Oxide, Mg Sulfate, Sodium Phosphate

Stimulant laxatives - Bisacodyl, Casanthranol, Castor Oil, Phenolphthalein, Senna

Stool softeners - Docusate, Poloxamer

 

Bulk-formers - To prevent intestinal blockage, it is necessary to drink plenty of fluids during their use. Results often occur in 12 hours. However, it may take 2-3 days. Bulk-formers may have possible unwanted side effects such as increasing blood pressure or causing water to be held in the body. Contact your doctor if difficulty in breathing, intestinal blockage, skin rash or itching, or swallowing difficulty (feeling of lump in throat) occur. Throat irritation is usually only from the liquid form.

Hyperosmotics - Contact your doctor if confusion, dizziness or lightheadedness, irregular heartbeat, muscle cramps, or unusual tiredness or weakness occurs.

The saline type is often called “salts”. They are used for rapid emptying of the lower intestine and bowel. Results usually occur w/in 1/2 to 3 hours. ON an empty stomach, the results are quicker. A second glass of water/juice is recommended for best results and to avoid dehydration. They are not used for long-term or repeated correction of constipation. Saline laxatives may have to be avoided if your kidney function is not normal.

The lactulose type is a special sugar-like laxative that works the same way as the saline type. However, it produces results much more slowly and is often used for long term treatment of chronic constipation. Lactulose may sometimes be used in the treatment of certain medical conditions to reduce the amount of ammonia in the blood . It is available only with a prescription. Results may take 1-2 days.

Lubricants - Results usually occur in 6-8 hours. Mineral oil should not be taken within two hours of meals because of possible interference with food digestion and absorption of nutrients and vitamins. It is usually taken at bedtime. Mineral oil should not be given to children under 6 or to bedridden elderly persons because a form of pneumonia may be caused by the inhalation of oil droplets into the lungs. Mineral oil is usually not used during pregnancy (interferes with the absorption of nutrients and vitamins in the mother, may cause severe bleeding in the newborn infant).

Stimulants - They are usually taken on an empty stomach for rapid effect - usually at bedtime to produce results in the morning although some may require 24 hours or more. They are more likely to cause side effects such as overuse and laxative habit, skin rashes, intestinal cramping, and potassium loss. Stimulant laxatives, if taken too often, may worsen weakness, lack of concentration, or dizziness and light headedness. Contact your doctor if confusion, irregular heartbeat, muscles cramps, skin rash, unusual tiredness or weakness occur. Castor oil should not be used by pregnant women as it may cause contractions of the womb. Results from castor oil occur in 2-6 hours.

Stool softeners (emollients) - Results usually occur 1-2 days after the first dose. However, it may take 3-5 days. Contact your doctor if a skin rash occurs.

When taking laxatives, it is important that your health care provider know esp. if you are also taking blood thinners, heart medicine (Mg laxatives may reduce the effectiveness), tetracyclines for infection (Mg and bulk forming laxatives will prevent it from working), ciprofloxacin, etidronate, or sodium polysterene sulfonate. Do not take any type of laxative within 2 hours of taking other medicine because the desired effect of the other medicine may be reduced. Laxative products are overused by many people. Such a practice often leads to dependence on the laxative action to produce a bowel movement. In severe cases, overuse of some laxatives has caused damage to the nerves, muscles, and tissues of the intestines and bowel.

 

From Drug Safety, 1994 Jan, 10(1):47-65.

Adverse effects of drugs used in the management of constipation and diarrhea. By Gattuso JM; Kamm MA.

Excerpts from the Abstract: Ispaghula can cause serious allergic reactions. Dantron (danthron) preparations should only be used in older patients and the terminally ill because of the risk of hepatotoxicity with this drug. Oral oxyphenisatine should no longer be used. Senna would appear to be the stimulant laxative of choice during pregnancy and lactation. Bisacodyl is the polyphenolic derivative of choice. Lactulose, sorbitol and lactilol rarely cause significant adverse effects. Magnesium salt laxatives and phosphate enemas can cause serious metabolic disturbances in babies and young children. The role of cisapride in constipation has not been established. Antidiarrheal drugs are second line drugs whose use is aimed at minimizing inconvenience and discomfort. No antidiarrheals can be recommended for children under 4 years of age. Loperamide is the drug of choice in older children and adults. The atropine component of diphenoxylate/atropine combinations can cause significant adverse effects.

            Drugs used to control diarrhea and constipation are in widespread use, yet little is known of their toxicology. Most came into common usage well before the current stringent requirements relating to the licensing of new drugs existed. In addition, many are over-the-counter preparations which bypass regulatory assessment. Many are extracts of naturally occurring substances and therefore not considered to be drugs by patients and sometimes doctors. In this article, we consider the adverse effects of these drugs ... at therapeutic doses or inadvertent overdose. Possible adverse effects associated with the long term use of these drugs in high dose will also be briefly considered.

            The mechanisms of laxatives include: (1) fluid retention within the colon, thereby increasing the bulk and softness of the stool and facilitating intestinal transit, (2) decreasing the net absorption of luminal water by actions on the colonic mucosa, (3) increased intestinal motility, resulting in decreased intestinal transit time and less time for absorption of salt and water, and (4) direct softening of stool, facilitating transit and defecation.

 

Bulking Agents: Bran, carmellose (carboxymethylcellulose), Ispaghula, Sterculia, wheat husk

Bulking agents include dietary fiber and bulk-forming laxatives. The commonly reported adverse effects are flatulence and abdominal distension. An excessive dose or possibly an inadequate fluid intake can cause intestinal obstruction. Bulking agents may diminish absorption of some minerals and drugs, but this is not usually clinically significant.

 

Stimulant Laxatives: Polyphenolic (diphenylmethane derivatives) - phenolphthalein, bisacodyl, sodium picosulphate, oxyphenisatine, Anthraquinones - Dantron (danthron), senna, Miscellaneous - castor oil, glycerol, docusate sodium/calcium

Stimulant laxatives are thought to increase intestinal motility, decreasing the time available for salt and water absorption. A common adverse effect is abdominal pain which is presumably related to increased intestinal contractile activity. Although the chronic ingestion of laxatives has been blamed for the development of intractable constipation (‘cathartic colon’), there are no definitive studies which have demonstrated this. The major concern about the long term use of stimulant laxatives relates to the possibility of permanent gut nerve or muscle damage. It is unknown whether these changes are a primary part of the motility disorder or secondary to chronic laxative ingestion, and what their functional significance is. Oxyphenisatine should no longer be taken orally in the long term because of the development of chronic active hepatitis in humans. It is still available as an effective enema preparation which should only be used prior to radiological investigation or for short term use as a last resort in severely constipated patients because of the possibility of liver toxicity. Castor oil is now rarely used as a laxative because of its unpleasant adverse effects of cramping and fluid bowel actions. Glycerin is used in suppository form only. It may act as a mild stimulant and lubricant. There are no reports of adverse effects. Docusate sodium is a stool softener as well as a stimulant laxative. It is discussed below.

 

Osmotic Laxatives: mannitol, sorbitol, lactitol, lactulose, magnesium sulphate, magnesium citrate, magnesium hydroxide/carbonate, phosphates, sodium citrate

The common adverse effects of the osmotic laxatives are flatulence, abdominal pain and colic. These symptoms often settle after a few days. Up to 20% of patients receiving lactulose experience troublesome flatulence, abdominal cramps and pain. These effects may be transient. Lactulose can cause nausea and vomiting in high doses. It is usually well tolerated and long term administration appears to have no adverse effects. The dose of lactulose used in hepatic encephalopathy is usually far higher than that used in constipation. Wright (1988) reported 5 cases of ‘nontoxic’ megacolon in elderly patients receiving lactulose regularly. They were successfully treated by discontinuation of the lactulose and treatment with antibiotics. Sorbitol is a nonabsorbable sugar with an osmotic laxative effect. It is considerably cheaper than lactulose. There would appear to be no difference in laxative efficacy or adverse effects when compared to lactulose. Lactitol is a disaccharide derivative of galactose and sorbitol. It is not hydrolyzed in the small intestine and reaches the colon unchanged. Adverse effects are similar to those of lactulose and we are not aware of any other serious adverse events. Magnesium-containing laxatives are not only osmotic laxatives, but are also thought to act by releasing cholecystokinin, which stimulates intestinal secretion and motility. Administration of hypertonic salt laxatives can cause significant dehydration unless adequate oral hydration is maintained. Mg salts should be used with care in patients with impaired renal function or previous gastric surgery. Infants are susceptible to Mg poisoning, and great caution is needed in pediatric prescribing. Overdose of Mg sulphate can lead to hypermagnesaemia, hypophosphataemia and secondary hypocalcaemia. Mg salt enemas can cause severe hypermagnesaemia and should be used with care. Children are at risk from these metabolic changes, especially the newborn and those with a megarectum. Phosphate enemas can cause traumatic injury to the rectosigmoid colon. The main problem is the risk of mechanical trauma to the rectal wall, but this is extremely rare. There have been a number of reports in the literature documenting severe and even lethal episodes of hyperphosphataemic hypocalcaemia caused by phosphate enemas. Davies et al. (1977) reported hypocalcaemia, hyperphosphataemia and dehydration after a single hypertonic phosphate enema in 2 acutely constipated infants. Most adverse effects have occurred in children with renal failure or Hirschsprung’s disease. Prolonged enema retention or excessive use are probably the most important causative factors in children with normal renal function. Soap enemas are rarely used now. Hyperkalaemia has been reported with potassium based soaps.

 

Stool Softeners: arachis oil, docusate sodium/calcium, liquid paraffin

Liquid paraffin is also known as mineral oil. Adverse effects are said to include: 1) interference with the absorption of fat soluble substances, including the fat soluble vitamins (A, D, E, and K), does not appear to be clinically significant.2) foreign body reactions in the intestinal mucosa, 3) anal leakage, and 4) lipoid pneumonia if aspirated. The adverse effects of this drug and the existence of equally effective safer drugs, indicate that the use of liquid paraffin and paraffin based drugs should be discouraged. Docusate sodium/calcium is a surface-active agent with emulsifying and detergent properties which softens the stool by enabling water to penetrate the fecal mass. It is also thought to have some stimulant activity. The most important potential adverse effect is the potentiation of hepatotoxicity produced by other drugs. Ducosate sodium may enhance the gastrointestinal or hepatic uptake of other drugs and thus increase their potential toxicity (reports of this are rare); the mechanism for this increased uptake has not been well defined. Ducosate sodium produces morphological changes in gut mucosa at the light and electron microscope level, although the physiopathological importance of this is unknown.

 

The article has information on antidiarrheals as well.

 

From an Article in a Pharmacy Journal

From Connie (Mom to Alexandra)

Malt soup extract is safe for long term use.......It is an OLD OLD OLD remedy for constipation. I learned about it by reading through one of my husband's pharmacy journals. Here is an excerpt from the article:

Bulk forming products are the recommended choice as initial therapy for most forms of constipation. Their action is to hold water in the stool, causing distention of the intestines and stimulation of normal peristalsis. These products most closely approximate the physiologic mechanism of evacuation and are considered the safest of laxatives. Products include psyllium seed, cellulose derivatives, polycarbophil, and malt soup extract.

 

From Queens University in Canada

http://meds.queensu.ca/medicine/anealtext/druglaxative.htm

This website has lots of good information most of which duplicates the above. Some new points follow:

*insoluble fibers have more of a bulking effect, soluble fibers have more of a metabolic effect on lipid metabolism

*Mg salts can increase CCK secretion and promote fluid secretion

 

From Stanford Medical School

http://www-med.stanford.edu/school/DGIM/Teaching/Modules/backup/Constipation.html

Bulk laxatives:

*psyllium, ispaghula, husk, methylcellulose

*bran cheaper, but bloating may be worse

Saline laxatives:

*Milk of Magnesia = 1/8 of all laxative OTC sales.

*be careful of electrolytes (including Mg level)

Fecal softeners

*DSS (does have some motility effects, secretory effects)

*best when straining must be prevented (hemorrhoids, angina, fistulae, etc....)

*may increase chance of fecal incontinence

Enemas

*must watch for electrolyte losses

*soaps can damage mucosa after repeated uses

 

From Pena’s Office

Personal Advice from Kathie for Stephen

            Phonecall w/ Kathie in July ‘97 (Stephen was 1 month post closure and severe constipation had not set in yet), my goal is to make sure Stephen has at least one big BM a day. 2-3 are fine, as long as there is at least one big one and there are no small ones. If he doesn’t have a big BM in 24 hours, give him a babylax.

            Phonecall w/ Kathie on Jan. 23, ‘98 (Stephen was 7 months post closure and severe constipation had just set in), She said a laxative diet is the first choice. Unfortunately, prunes 3x/day (2 jars) didn't work for Stephen. Given that fact, she didn't think a stool softener would work for him either. She suggested we start giving him Milk of Magnesia (1 Tbs..) before bed tonight. If we don't get a big poop by tomorrow night, we should give him a babylax and up the dose of MoM (2 Tbs..) . If he gets diarrhea, lower the MoM dose. But never let him go more than 24 hours w/out a big poop. Note: she specifically said that she prefers we use laxatives which work on the whole colon than try to manipulate the rectum (as in babylax). She said our goal was not to manipulate the rectum. If we can gradually reduce the MoM in the future by replacing it w/ a laxative type of diet, she thought that would be great but very difficult to do esp. since babies often will only eat what they want. I asked her about the sorbitol and she said it causes more gas than MoM.

            Phonecall w/ Kathie on Jan. 26, ‘98. BabyLax must be given whenever the child hasn’t had a big poop in 24 hrs. whether or not he is on laxatives. BabyLax treats constipation. The goal is to prevent constipation NOT to treat it. The laxatives prevent constipation. You get babies off of laxatives when they are old enough to understand and follow dietary requirements. Pena does not like to manipulate the rectum because he wants Stephen to develop and maintain the ability to empty his rectum on his own. If he can’t, we’ll resort to babylax but he has to be given an opportunity to do w/out it first. Kathie is not at all worried about MoM being dangerous.

 

From PTN Articles

From PTN Vol. 5, #3 (Pena author)

Pena recommends as mild - Milk of Magnesia, Lactulose, Metamucil, Colace, and Castor Oil

Probe of 5 Laxative Ingredients Ordered - Washington (AP), 5/22/96

The government told manufacturers Tuesday to study the long-term safety of five common laxative ingredients after animal research raised questions of a possible - though unproven - cancer threat. Forty-one laxatives contain at least one of the ingredients: phenolphthalein, bisacodyl, aloe, cascara sagrada, and senna. The FDA will let Americans buy the laxatives for now, because using them only for occasional constipation is considered safe. The question is whether people are at risk who ignore warnings on the drugs’ packages and use laxatives repeatedly and for long periods of time. The FDA is concerned with chronic use of the product. Anxious consumers have alternatives - 120 laxatives that use other ingredients including the popular psyllium, found in bulk-fiber laxatives like Metamucil and the veteran remedy castor oil. Laxative questions arose last year when a National Toxicology Program study found high doses of phenolphthalein fed to rats and mice for two years caused a variety of tumors. The rodents received laxative doses hundred of times larger than people take.

From PTN Vol. 5, #2 (author Kathie G, Pena)

            1st laxative type of diet (which may include natural laxatives), then either a bulk forming product or a stool softener, then a laxative w/ an active ingredient

            Pena’s definition of bowel management - the use of colonic irrigations, enemas, or suppositories once a day AND (emphasis mine) sometimes the manipulation of diet and medication to keep the colon quiet in between those irrigations. (Note: by this definition, a diet and medication regime is NOT bowel mgt.) Bowel mgt. keeps a patient “artificially” clean.

From PTN Vol. 6 #4 (author Pena)

            The main role of the parent before age 3 is to avoid constipation, diarrhea, and diaper rash. It will be much easier for a child to become toilet trained if he has one big bowel movement everyday at a predictable time. The parents can achieve this by trying to be very regular in the type of food and meals schedule. It is better to give 3 meals w/ no snacks since the colon moves every time we eat. It is ideal to condition the patient’s colon to move at a single time everyday, if possible. This is best achieved by giving regular meals at the same time every day.

            Constipation is a big enemy. One has to be sure the patient empties the rectum every day. To achieve this, we follow the simple philosophy of trying to produce a laxative effect everyday by the most natural means possible. If the patient can stay free of constipation by eating prunes, congratulations! Unfortunately, most patients need much more than laxative type foods and must use laxatives.

 

Information on Herbs

From Medicinal Herbs by Teresa Hilleary, an article in PTN newsletter vol. 6, #1

Note: Teresa is a Registered Dietitian

Herbs are not regulated in any way by the FDS, and there are no legal standards for their harvesting, processing or packaging. There is no organized surveillance system to report bad reactions or allergies, or to regulate the dosage and the purity of herbal products. Labeling laws allow unsubstantiated health claims to be made on supplemental labels. Some potential problems with the use of herbs are:

1) The dosage and bioavailability of the active ingredients in the herb can be inconsistent from batch to batch. This is because individual plants can differ greatly in their potency depending on genetics, growing conditions, storage, and handling.

2) The labeling can be inaccurate or inconsistent - the same common name may be used for different plants.

3) The purity of herbal preparations is not regulated. Additives not declared on product packaging can lead to severe adverse reactions. Some imported herbal products have been found to contain steroids, prescription antibiotics, narcotics, and toxic levels of lead, arsenic, and cadmium.

4) Even when the supplement is labeled “USP”, this refers to meeting standards for the ordinary vitamins and minerals in that package, no the herbal ingredients for which there are no standards. (The United States Pharmacopeial Convention is a non-profit group that sets standards for all prescription and over-the-counter drugs sold in the U.S.

For more details and sources of more information, see the article.

Additional information from one of Teresa’s posts:

Herbs have drug effects, and they are not regulated as far as dosage, bioavailability and purity (the way prescription medications are). They have killed people due to mislabeling and the presence of contaminants (arsenic, lead, for example). I have personally tried a few types of herbal preparations (Echinacia when I thought I was coming down with a cold, feverfew for migraine prevention) but I have thought long and hard about giving them to my kids, and decided the risk was not worth it. Aloe vera is an extremely powerful laxative if taken orally. Don't be fooled by its soothing effects when used on the skin, or by the fact that it is "natural" etc. This is not to say your child may not benefit from it; some of the kids here need a very powerful laxative. Just recognize it as such. One of the best references is The Honest Herbal by Varro Tyler, a food biochemist. It lists many of the pros and cons of specific herbs.

From Sue (mom to Emily, Mega Cystic Micro Colon)

Monday evening I attended a lecture by an iridologist / herbalist that was extremely interesting. She mentioned to the group that papaya enzyme can work wonders on kids with dysmotility problems. Apparently the enzyme works to promote better digestion. She also emphasized limiting all sugar consumption - sugar creates gas when digested, hence a lot of gas, distention, and bloating. The other thing she mentioned was the use of herbal pumpkin. Herbal pumpkin is a natural stool softener and can help regulate constipation.

From Alyssa (Adult)

I use an herbal tablet almost daily. It is called LBS II by Nature's Sunshine. I get them from my colon hydrotherapist, and she says it is non-addictive, and it's very gentle.

 

Safety and Side Effects of Laxatives

Safety of Stimulant Laxatives

From Teresa (Registered Dietician, mom to Caroline, DS and LIA)
Posted to PTN on 8/31/97

I heard on the national news Friday evening that the laxative phenolphthalein has been taken off the market by the FDA due to concerns that it causes cancer. Here is a summary of the drug info I have on this product and related products:

Stimulant Laxatives

It has commonly been thought that the stimulant laxatives induce defecation by stimulating propulsive peristaltic activity of the intestine through local irritation of the mucosa or through a more selective action on the [nerves] of the intestinal smooth muscle, thus increasing motility. However, recent studies show that these drugs alter fluid and electrolyte absorption, producing net intestinal fluid accumulation and laxation. Stimulant laxatives mainly produce evacuation of the colon; however, castor oil and phenolphthalein [hereafter referred to as P.] also directly or reflexively increase activity of the small intestine.

Diphenylmethane Laxatives

Bisacodyl, bisacodyl tannex, and P. are diphenylmethane derivative stimulant laxatives.

Names of Preparations containing P.:

Phenolphthalein (White): Alophen Pills, Medilax, Modane, Prulet,Feen-A-Mint Chocolated

P. White Combinations: Phillips LaxCaps, Kondremul with Phenolphthalein, Agoral, Colax, Modane Plus

Phenolphthalein Yellow: Feen-A-Mint, Evac-U-Lax, Ex-Lax, Lax-Pills, Espotabs, Evac-U-Gen

P. Yellow Combinations: Doxidan Liquigel, Unilax Softgel, Ex-Lax Extra. Gentle, Correctol, Dialose Plus, Feen-A-Mint, Femilax

Pre-surgery Prep Kits: Evac-Q-Kwik

Other notes from the news story:

1. Some of the above products have already removed P. from their contents. You need to check the label to see if it is listed.

2. Don't worry if you had been using the product only occasionally. The highest risk would be to patients who used this product frequently over a long period of time.

3. The FDA is currently investigating several other laxatives with concerns about their long-term safety. [Looks like senna may still be under investigation.]

From a Later note:

Finally, I have an idea as to possibly why senna is being questioned. One way cancer starts is from chronic irritation of a tissue for many years. For example, the pipe smoker getting cancer in the corner of their mouth where the pipe sits year after year. The alcoholic who gets mouth/throat or liver cancer. The smoker who gets lung cancer. I work in a veterans hospital--please don't ask me to elaborate further....Senna works BECAUSE it irritates the colon and makes it move. After Caroline was on it for a year (after pull-thru by Dr. Pena), a GI doctor expressed concern and recommended lactulose as another option. Fortunately we were able to make a gradual change and it has worked fine. I am sorry to "stir the pot" on this one, but informed is better than uninformed.

From Sandy (Mom to Ryan, IA, sacral anomalies)

Posted to PTN on 9/26/97

There is a story in today's Wall Street Journal that states that the makers of ExLax is withdrawing it from the market because it contains phenolphthalein which causes cancer. It explains a little about the study the FDA is doing on the other stimulant laxatives. A new reformulated version of ExLax will use senna, which is still being studied.

From Cynthia (mom to Drew, VATER, IA, 6 yrs)

Posted 11/22/97

Now that Agoral is bad and they are taking it off of the shelves, we are trying to switch to Kondremul which is a mineral oil emulsion. We just received a letter from one of Drew's doctors about this. His recommendations to anyone taking Alophen, Ex-lax, Agoral, Feen-a-mint, Modane, or any other phenolphthalein drugs was to substitute:

1st step Therapy-Tablets: Milk of Magnesia

             Liquid: Mineral Oil, Milk of Magnesia, Haley's MO, Kondremul

2nd Step Therapy-Tablets: Carter's little pills, Ducolax, Senokot

              Liquid: Senokot, Dr. Caldwell's, Pericolace

Of course keep in mind kidney problems when choosing.

From The People’s Pharmacy: A Guide to Home and Herbal Remedies by Joe and Teresa Graeden

pg. 113 Studies sponsored by the National Toxicology Program found that phenolphthalein produced “clear evidence of carcinogenic activity” in laboratory animals. Research also showed that this common laxative damages a crucial anticancer gene called p53. The FDA proposed a ban in 1997, and it wasn’t long before the makers of laxatives like Ex-Lax and Correctol reformulated their famous brands. The manufacturers of Ex-Lax selected senna as a replacement. This seemed like a wonderful solution. The marketing gurus could claim that the new and improved products were “natural”, since senna is an herbal laxative. But at one time the FDA raised questions about senna as well. Back in May 1996, the feds issued a letter indicating that senna might also cause gene or chromosome abnormalities. The agency also raised questions about the safety of similar herbal ingredients, aloe and cascara sagrada, but has not taken regulatory action. This reminds us that just because something is herbal or natural does not guarantee its safety. The ingredients in senna and buckthorn are similar to the chemical phenolphthalein, which can deplete the body of calcium and vitamin D. For a child, longterm use might interfere with proper bone growth.

From Mary (mom to Katherine, 2yrs)

Posted Aug. 25, 2000

            One of the side effects of long-term use of senna is a stained colon. The senna actually turns the colon from its normal pinkish-red to brownish/black. The senna components stain the colon almost like hair dye stains your roots. In fact, I think that some hair dyes might actually use senna as a colorant. If I remember correctly, this side effect disappears after one has been off of senna for some time.

            The second thing that no one has mentioned is that senokot has been reclassified by the FDA to a secondary schedule drug: "needs further testing." Apparently, some of the mice/rat tests that were conducted led to pre-cancerous cells in some of the animals. Perdue is supposedly in the process of performing a new 2 year study to counter the FDA's findings. There is a rumor floating around that the FDA has reproved senokot, but I have personally contacted the FDA and found that this is NOT the case. The letter the FDA sent me (written approx. May ‘98) is addressed to the Perdue Frederick Company in particular and states, "It appears that certain senna constituents may be mutagenic or tumorgenic." The requirement for FURTHER testing arises from the studies of senna and its components that yielded these results -- not from fears arising from the results of the original phenolphthalein studies. The letter from the FDA does admit that the tests were done on senna components and not the marketed products themselves. The FDA also allows that the marketed product may somehow prevent some of these components from being absorbed. That is where the Perdue study is supposed to come in. The FDA letter also cites other reasons for senna to be further studied, but they are also based on studies already conducted on senna and its components/constituents.

            That said, I still give my daughter senokot every day under her GI's advice. He feels it is safe given his anecdotal experience with his patients (some who have been on senna long-term) and given it's history of use (hundreds of years).

From Gerry (adult, HD)

Date: Sun, 31 Aug. 1997

I am 45 and have had HD from birth. From a very early age, I was on senokot tablets and Agarol. I took the senokot until my early twenties and nothing else, usually 2 tablets but occasionally up to 6 or more depending on how things were and I'm still around. I spoke to my consultant (that's what be call our senior hospital doctors here in the UK) and because of HD he thought that I had no more chance of cancer than anyone else. He specializes in Cancer surgery not HD.

From Karen B. (Head of PTN, mom to Sammy)

Posted to PTN on 1/19/98

Just to let you know, we contacted the makers of Senokot, and they are not reformulating it. Apparently they had some problems with getting one of the main ingredients, and had a lag in production. It should be back in all major pharmacies by now, and getting to the smaller ones soon.

From Laxatives: Clinical Pharmacology and Rational Use by W. Grant Thompson Drugs 19: 49-58 (1980)

Use of the stimulant laxatives can lead to an atonic colon in which the neuromuscular apparatus is permanently damaged.

From Suzanne

I just attended a seminar on botanical medicine and because one of the presentations was cancelled ended up in a lecture on senna (coincidence?). I thought I'd pass along some of the information, because I found it to be reassuring as I had concerns about my little guy needing to be on it indefinitely. Some interesting facts: it has been safely used for 10 centuries, it only affects the nerves of the colon and does not inflame the mucosa as oil and saline laxatives can, and over 90% is passed through to the stool and not metabolized. The actual laxative effect is caused by the compounds that senna is broken down into by the intestinal bacteria. This means that if the colonic bacteria have been destroyed by antibiotic therapy, the senna may not have much effect until the bacteria build up again. Long term use (4 to 12 months) will induce melanosis coli which is a brown-blackish discoloration of the colonic mucosa. This can reverse in an equal amount of time and does not seem to be a risk factor for colon cancer (whew). It seems that animal studies are conflicting but patients on longterm laxatives do not seem to have a higher incidence of cancer. It sounds like a lot of us move to using enemas but for those of us with kids on years of senokot I hope this offers some reassurance.

From the Mayo Clinic web site:

http://www.mayohealth.org/usp/html/202319.htm#GXX35

Side effects for stimulant-containing laxatives Confusion; irregular heartbeat; muscle cramps; pink to red coloration of alkaline urine and stools (for phenolphthalein only); pink to red, red to violet, or red to brown coloration of alkaline urine (for cascara, danthron, and/or senna only); skin rash; unusual tiredness or weakness; yellow to brown coloration of acid urine (for cascara, phenolphthalein, and/or senna

For More Info

Senokot web site http://www.senokot.com

Side Effects of Senokot

From Karen B. (Mom to Sammy, 4, cloaca)

When we were using Senokot for Sammy, her butt was always extremely raw. She probably had worse diaper rash then than after her closure! I found that it wasn't even the amount of soiling, but that the Senokot made her poop much more caustic for her skin.

From Monique (Mom to Sami, 2.5 yrs, HD)

I used to have Sami on Senokot (chocolate flavored) but it made her bottom breakdown more than usual. Once I stopped the Senokot, her bottom got better. I don't know if that happens to all babies, but I have heard of it happening to other kids.

NOTE: I have heard that adding metamucil or another bulking agent to prevent liquid poops really helps reduce the caustic effect of senna.

Safety of Mineral Oil

From an Article in a Pharmacy Journal.

From Connie (Mom to Alexandra) Connie’s husband is a pharmacist

Patients taking mineral oil should not take docusate products. Mineral oil may be absorbed, provoking a foreign body reaction. Mineral oil can easily be aspirated into lungs; do not administer at bedtime or to very young, elderly, or debilitated patients. Mineral oil may impair the absorption of fat-soluble vitamins, A,D,E, and K. Decreased vitamin K absorption is particularly significant for patients taking oral anticoagulants, as their effect may be increased. Impaired vitamin D absorption may affect the absorption of calcium and phosphates.

From PTN Moms

From Liz (mom to Noah, HIA)

The bright yellow fluid is the mineral oil, this is the appearance it takes on after it passes thru the colon. It isn't necessarily a bad thing. You can cut back, but if you don't see it, it usually isn't enough. Some doctors and parents recommend that you not administer mineral oil too close to bedtime, because there is a risk of regurgitation and possible aspiration. Try giving it on an empty stomach so that it doesn't interfere with the absorption of foods that he eats at his regular meals.

From Cathy  (Mom to Andrew)

My son Andrew took mineral oil for almost 4 years. He didn't have any serious problems because of this. He still takes a laxative that has a mineral oil base. The mineral oil base medicines seem to work best for him.

 

Safety of MoM

From Teresa (Registered Dietician, mom to Caroline, LIA and DS)

I would be cautious about MOM unless you know FOR CERTAIN that there is ABSOLUTELY no concern about kidney problems. Kidney problems can make it harder to pee out the extra magnesium imposed by giving MOM. It just seems like our little ones with bladder concerns can potentially have kidney problems also, so please use caution here.

From Heather (Mom to Kelsey, IA)

MOM causes Kelsey to develop a really bad rash

Note: I found the same thing to be true with Stephen. It made his butt bloody and even closure didn’t do that.

 

Side Affects of Colace

From Jim, Posted to PTL 8/12/97

Has anyone used Colace as a stool softener for a time and then developed stomach cramps from it? My wife started using it (quite effectively) as a result of my learning about it from you guys. Lately, the night before she has a BM her stomach hurts after taking it, hurts during the BM, and then hurts all day after the BM. Any suggestions?

Reply from Liz (mom to Noah)

My son turned out to be allergic to Colace. It gave him cramps, vomiting, and hives after he had been taking it regularly for a while.

Reply from Teresa (Registered Dietician, mom to Caroline, LIA and DS)

The info I have from AHFS Drug Information 97 (the "big red drug book" used by hospital pharmacists) classifies Colace (docusate sodium) as a stool softener, stating "Adverse effects associated with the use of stool softeners are rare. Occasionally, mild, transitory GI cramping pains or rashes may occur. Irritation of the throat has occurred following oral administration of docusate sodium solutions. In one study, docusate sodium was found to be toxic to hepatic [liver] cells in vitro" [in a test tube, may not occur in the body]. "The extent to which orally administered docusate salts are absorbed has not been determined, but the drugs appear to be absorbed to some extent in the duodenum and jejunum and subsequently excreted in bile." "Softening of the feces generally occurs within 1-3 days following initiation of oral docusate salt therapy." "Docusate salts should be administered in doses only large enough to produce softening of the stools.

 

Side Effects of Metamucil/Citrucel

From Cheryl (Scott's mom, almost 5yrs, HIA)

Our GI doc suggested Citrucel. We used it in orange juice and water. It's supposed to not create as much gas as Metamucil.

From Jane (mom of Ty)

We've been giving metamucil to our 3 yr. old for a year now. He was switched to Citracel in Dec. but had 3 blockages within a month. He's been fine since we took him off of it. Don't know why.

From Fran

I am a Certified Occupational Therapy Ass't, studying nutrition I have heard that psyllium should not be done long-term, in other words not more than 3 months. It will pull out of the system fats, both good and bad, do not use at the same time you are giving any vitamins, if you are. >From the book, Prescription for Nutritional Healing by the Balch's on page 52, rotate among several different supplemental fiber sources. Consuming excessive amounts of fiber may decrease absorption of zinc, iron and calcium. They suggest using fiber in foods more and fiber that has had less processing: to quote: "Some doctors recommend Metamucil, which contains psyllium mucilloid, as a laxative and fiber supplement. However, we prefer less processing and all-natural products."

Side Affects of Lactulose and Sorbitol

From Lactulose-Induced Megacolon (referenced by Drug Safety) by Richard Wright in Gastrointestinal Endoscopy

Recent experience at our institution is that most cases of “nontoxic megacolon” are related to the use of Chronulac (lactulose) given to elderly patients for constipation. In the past 3 months, five patients have presented with colonic dilation greater than 12 cm, presumptively related to gas production by bacterial metabolism of lactulose. These patients have universally responded to broad spectrum antibiotics and discontinuation of lactulose. We have seen no recurrences of colonic dilation when the patients are switched to another laxative preparation.

From my pediatrician in E-mail re: Lactulose Induced Megacolon article above

Regarding sorbitol: I don't think we have to worry about toxic megacolon as with lactulose. Unlike lactulose, sorbitol isn't digested by bacteria, and hence shouldn't lead to bacterial overgrowth. It loosens stool, in fact, simply because it isn't digested and therefore has an osmotic effect. There are no reports of association with toxic megacolon according to my online source (Micromedex), nor does the Duke outpatient pharmacist know of any.

From Lactulos in Gut, 1970, 1, 1043-1048 (referenced by Drug Safety article)

Sorbitol is not fermented in the bowel and has an osmotic action only on stool consistency. Lactulose is absorbed in insignificant amounts only, which are rapidly excreted by the kidney. It has no effects beyond the lumen of the bowel. Long-term administrations of lactulose have no adverse effects.

From Laxatives: Clinical Pharmacology and Rational Use by W. Grant Thompson

Drugs 19: 49-58 (1980)

Re: lactulose. Severe hypernatraemia due to fluid depletion has been reported as has superinfection with opportunistic organisms.

From Cost-Effective Treatment of Constipation in the Elderly: A randomized Double-Blind Comparison of Sorbitol and Lactulose

The American Journal of Medicine, November 1990, Vol. 89, pg. 597-601

There were no significant differences between sorbitol and lactulose in any outcome measured except nausea, which was significantly increased with lactulose. Up to 3-4 days are required for lactulose to take effect and the carry over effect after cessation of lactulose is about 6-7 days. Patients were instructed to maintain high dietary fiber and to avoid sources of free fructose, such as apples and pears. This was done because sorbitol may induce malabsorption of free fructose, thereby potentiating the effects of the sorbitol.

Websites with More Information on Sorbitol/Lactulose

http://home.intekom.com/pharm/lennon/lacson.htm

http://www.rxmed.com/monographs/bak/chronul.html

From PTN Moms

Since this is a sugar, make sure to brush teeth afterwards!

From Teresa (Registered Dietician, mom to Caroline, DS and LIA)

I would think sorbitol, mannitol, & lactulose would all act about the same and have the same long-term effects, in general. I am not sure the % that each one is absorbed, though. There is a sorbitol pathway in the body that is bad for you in some way - it is one of the reasons diabetics end up with complications; the body accumulates sorbitol molecules or a by-product of them in the tissue or something It looks like something that happens in the body when the blood sugars are consistently too high, causing some of the long term damage in those diabetics who do not take care of themselves. The body makes its own sorbitol and too much causes damage but the amount absorbed into the body from sorbitol consumed orally is so small that ingesting sorbitol doesn't appear to be a problem. See http://www.infowest.com/podiatry/medical/diabetic/basic/etiology.html for more info on this pathway. Caroline has gas sometimes; it really varies. It does not seem socially unacceptable at this point; she occasionally complains of "owie tummy" but not on a routine basis.

From Cathy  (Mom to Andrew)

We adjust Andrew's dose as needed...Sometimes he takes as much as 2 tablespoons a day - other days nothing. For Andrew, breaking it up into morning and night doses seemed to help the gas.

From Carrie (mom to Syndey,2, IA, VSD, cloaca, single kidney)

We have been taking Lactulose for about a year now. I do notice that if I don't stick to a very strict regime - i.e. don’t give it every day - Syd has lots of gas. The gas didn't seem to cause her pain just sounded awful. If we are consistent it is non-existent. We have just found a pharmacy where they will flavor this med, so we are going to try the *coke* flavor. Syd used to take w/no problem...

From Liz (Mom to Noah)

Noah sometimes got queasy after drinking a koolaid burst w/ lactulose mixed in. Dan (adult, IA) agrees: it makes me a bit queasy at first too but that goes away pretty quickly.

From Dan (adult, IA)

I get two responses from lactulose. Usually the first is at about an hour and a half. The second is about 5-6 hours after taking it. I don't see how the stuff works in an hour and a half for me but it has been what I observe.

 

Safety of Laxatives in General

From Prevention’s Book of Home Remedies and Super-Healing Foods, Under Constipation

Commercial laxatives are terribly addicting warns Paul Rousseau, M.D. chief of the dept. of geriatrics at VA in Phoenix, Arizona. Take too many of these chemical laxatives and “your bowel gets used to them, and your constipation can get worse” he says.  He recommends crushed psyllium seed the ingredient in many natural or vegetable laxatives. Psyllium seed is a concentrated form of fiber, which, unlike the chemical laxatives, is nonaddictive and generally safe, even taken over long periods. These must be taken w/ lots of water. You can buy the psyllium seeds in a health food store and crush them yourself to save money. For occasional use, an enema or suppository is all right, says Dr. Rousseau. Use them too often, however, and you risk creating a lazy colon. That is you could end up worse off. He recommends glycerin over harsher chemical suppositories.

From Eating Disorders Shared Awareness Website

(http://www.something-fishy.org/ed-2v.htm

Continued laxative use can cause bloating, cramping, dehydration, electrolyte disturbances and imbalances, cardiac arrhythmias, irregular heart beat and heart attack, renal problems, and death. They have lists of vitamin and mineral deficiencies symptoms and effects.

 

Supplies

Paying for Supplies

Getting Insurance to Pay

Cheryl (mom to Scott, almost 4, high ia)

My son Scott was born with IA and is going to be 4yrs old on May 28th. Our insurance doesn't pay for pull-ups (although, when he turns 4 I'm going to ask again), but they do pay for all of our enema supplies. At first they didn't because I was paying for them and doing them without guidance. I finally had a pediatric home health care nurse come and she ordered everything I told her I needed. The supplies were just sent to my home.

 

To Minimize Odor

From Mici (mom to kelsey, 2, cloacal exstrophy)

            Devron tablets or Derifil tablets are deodorants that can be put into a colostomy bag to limit odor. They can also be taken orally. The tablets are chlorophyllin copper complex. They do tend to make the stool in the bag green like grass, but do cut down on the odor. The company that makes the Derifil is Rystan Company, Little Falls New Jersey 07424.

            My daughter Kelsey has an ostomy. As I am sure most of you know, they can have a wonderful smell. Kelsey is 21/2 and not yet old enough to chew a tablet so I give her a pediatric form of bifidus and acidophilus in her bottle at night. It makes a remarkable difference, not only does it cut down on the odor but it helps with the gas she has. It is milk free and made for a younger child. It does take a couple of days but well worth it.

From PTN Newsletter Vol. 3, #4

If I give my 6.5 yr. old daughter a Devron tablets (bismuth subgallate) twice a day for two days before the event, the odor of the stool is completely eliminated. Devron has been used by adults for 30yrs. It has recently been used by children with great success.

From the Oops Book

Fresh parsley in the food, or a glass of apple juice daily may help to reduce the smell of the poop.

From Dietary Considerations When You Have an Intestinal Stoma by Florence Weber-Javers, RN, CETN

printed in Vol. 24, No. 1 of the Ostomy Insights. The UOA (United ostomy Association can be reached at (800) 826-0826. Note: this article was intended for people with ostomies

Tablets taken orally to control stool odor are available - see pgs. 34-36 of the American Ostomy Supply Resource Guide. The most common are charcoal capsules (which also help with gas), chlorophyllin copper complex, or bismuth subfallate. Some people choose to eat a lot of parsley to control odor. Eating yogurt or drinking orange juice can also help with odor control.

From PTL

A diaper genie - a garbage can with an inner 'air lock' to keep odor from escaping - is a good place to throw out chucks and other soiled items which becomes more important when there is no longer a baby in the house.

 

To Make Toilet Sitting Comfortable or Convenient

From Roxanne (mom to Remington, 7mths, IA)

We used to have a starcraft camper. We bought a porta potty for it. It flushes, has deodorizing chemicals, etc. I think we bought it @ K-Mart. For anyone wanting to do enemas in their child’s room, this might be an option.

From Marti (MS, RN, CS)

I have the 1998 Exceptional Parent Resource Guide on my desk. The magazine itself has a website at www.eparent.com. The resource guide ($9.95) lists organizations, products and services for kids with special needs. It also has a "library" which shows lots of related publications. The phone number is 1-800-535-1910. I looked for the ad and saw lots of trays for various purposes (mostly wheelchair). I did see one ad for the Buddy Seat which had a padded seat, foot rest, tray and headrest available for use on the toilet. It says it's for kids 18 months to 6 years. The company is Snugseat- web site at www.snugseat.com, and phone is 1-800-7684. This particular set-up looked good for kids who have to sit on the toilet for a long time and who need to have their feet pushing against something. I looked up the Snugseat Buddy Seat (look under bath aids), and then looked up local suppliers. Since the local supplier in my area is one of our HMOs, I suspect a good case could be made for insurance paying for these.

From Jane (Ty's mom)

There's the cushie-tushie, plain white softly padded seat for comfort and warmth. Fits securely in standard or elongated toilet seats. Then there's the squishie-tushie, a softly padded seat with water fill top, fun fish and glitter "swimming" inside. This one plays music just briefly when your child sits on it. Guess which one Ty picked?? Yep, the music one and he lifts himself up a little so it plays over and over, oh well, keeps him happy on the potty. They are at the Right Start stores or call 1-800-LITTLE1 for a catalog. It's 18.99 and was on sale for $16. 95. It's great and the perfect size for a little one sitting on the potty for so long. It would be great too for just potty training little ones. That big seat can be kinda scary, especially if they've had 1 fall in it, and sometimes the potty chair just isn't convenient like trips etc..It's been a life saver since the volume of water we use now in Ty's enemas is WAY too much for the potty chair.

Saving Money on Laxatives/Babylax

From Anne

I just found a web site that sells laxatives, among other things, online. They seem to have a pretty significant discount for buying in bulk. I have not bought anything from them so I know nothing about their reliability, etc.

http://www.marciaschs.com

Donna (Mom to Mark, 5.5 years old, IA) Posted 1/16/01

I just called The Purdue Frederick Company. Renate, a pharmacist, is who I spoke with. She says that the product found in the 2.5 oz. bottles and the 8oz. bottles are exactly the same. She says that the reason the 2.5 oz. bottle notes 'chocolate and children's' is for marketing purposes. She also said that a few years past, they were NOT the same. The larger bottles had alcohol as an ingredient. She said that all bottles with alcohol should have expired by now, but just to be on the safe side, check the ingredients to be sure there is NO alcohol before giving it to a child.Eckerd has the 2.5 oz. bottle for $7.59 per bottle and the 8 oz. one for $13 something!!

From Michelle

If anyone is interested in purchasing laxatives or other drugstore type products, there are several websites that advertise coupon codes while ordering online. I have received many products for free or near free. If anyone is interested the websites are:

www.flamingoworld.com

www.amazingbargains.com

www.coolsavings.com

Let me know if you would like more information on how to take advantage of some of these great deals.

From Gretchin (Mom to Franklin, HIA, 3)

I have found on-line sources to be the cheapest for Senokot. More.com is cheaper, but is backordered, but Drugstore.com also has it for less than "bricks and mortar" drugstores that I have found.

From Suzin (Mom to (Suzin)

Just discovered the aarp catalog. The generic senokot is under $9 for 12 oz. You have to be 55 or older, so I have my dad order it for us. Lots of good things in this catalog. Plus they also have an ostomy catalog. The phone number is 1-800-456-2277

From PTN Newsletter, Vol. 5, #2

Call Delores Speziela at (203) 854-7019 for 5 $2 coupons off a bottle of Senokot. There is apparently no limit on how often you can call.

From Jane (Mom to Sarah)

I bought the extra strength senokot tablets. I figured she took 2 teaspoons of the stuff daily, and with roughly 8 mg sennosides per tsp she was getting 16 mgs total. The extra strength was 17mgs per tablet at less than 1/3 the cost. I ground it up with a mortar/pestle, added the powder to a teaspoon of chocolate syrup and mixed it well, viola! Instant special chocolate treat with a beneficial surprise inside! It works just as well as the liquid and we always keep a supply of the tablets on hand when we run out of the other stuff.

From Christine (mom to Kalena, 14 months, IA, horseshoe kidney, bladder diverticuli, urinary reflux)

I found the senokot granules online at FamilyMeds.com for a good price -$24.97 for a 12 oz. canister

From Jane (mom to Tyler, 6, HIA)

For us to get senokot granules, the pharmacy needed a prescription so our insurance paid for it.

From Nova

Liquid glycerin is GLYCERIN USP. It is commonly found in the lotion section of a drug store. Glycerin is what you find in Babylax which is located in the laxative section of the drug store. I personally buy the liquid stuff and then measure and administer with my own syringe - it is far less expensive this way than buying Babylax. Both the pharmacist and Pena agree, the difference between the two options is merely in the packaging. It also offers me the opportunity to back off on the dosage if I want to. I get it in 4 oz bottles (118mL) for $2.99. Considering that your normal Babylax bulb has 4mL in each, then I am getting about 30 doses per bottle of plain glycerin USP! 30 doses for $3.00 using liquid Glycerin = $.10 per dose!

Note: Liquid glycerine is also at Wal-Mart near bandaids, zinc oxide and stuff for "minor scrapes and burns" which is around the pharmacy. It is also at Revco/CVS in the hand lotion aisle.

Preventing Accidents

From Kathy (mom to Aaron, HIA, neurogenic bladder)

I came across a company that makes a watch that has a vibration and /or beeping alarm. There are two models VibraLite and VibraLite 2. They cost $34.95 and $39.95. The VibraLite 2 is smaller. The company is Harris Communications.www.harriscomm.com, Their phone number is 1-800-825-6758. It has two alarm settings with automatic off and all those other gadgets like sports watches have. We bought this for Aaron. If I can get him to stop resetting it, we will have a great way of reminding to go to the bathroom.

 

Hiding Accidents

Parthenon Company @ 1-800-453-8898. They have discount ostomy supplies & things that you need for incontinence.

Incontinence Pads

Always Ultrathin Maxi's with Wings

From: Shirley (mom to Chantel, age 6, VACTERL)

The Kimberly-Clark Company did confirm that all their products are latex-free. They make Kotex, and that whole line of pads that would work for minor problems, and then Poise is their incontinent line--they have five different sizes/styles of those. Whether they'll work for a child--I don't know yet--but they will send free samples. Their telephone number is (800)335-6839.

The company that carries "diaper-shaped" latex-free pads and mesh underwear is called Certa. Their phone number is 1-888-LATEX NO! Their pads come in two sizes for children. The smallest holds 400cc, the next size--950cc. The cost is $59.79 (plus shipping) for a case of 200. They said that the pads are made to fit in regular underwear and that the mesh underwear they carry comes in adult sizes only. The smallest size has a 20" waistband. (I thought that sounded VERY small for an adult, and requested some additional dimensions--which I'm waiting for). I'm still considering these pads for Chantel for her ureterostomy, but unfortunately they don't have any samples in the kids sizes.

One company that is a good resource is HDIS @ 1(800)269-4663. They carry the Tranquility line of products and also Attends line--both of which they told me on the phone are latex-free. (I haven't verified this with the manufacturers, you probably would want to double-check before using the products). Both lines have a variety of incontinence pads and HDIS will send samples and a catalogue. It might be a good way to find if any of that type product will work. They offer discounts and free shipping if you sign-up for their automatic Delivery Plan. They also sell Critic-Aid, Peri-Wash II Cleanser, vinyl gloves, etc. Those things aren't readily available in any places around here, so HDIS was very convenient for us, but I don't know how their prices compare.

From Marti

I just stumbled across a catalog with some boy underpants (look regular) into which a pad can be placed and changed. I don't have the name of that particular pant, but I found its replacement pad with this info:

            Prevent Plus Training Pads (for boys and girls) order #30075

            Humanicare International Inc.

            1471 Jersey Ave.

            New Brunswick, NJ 08902

I thought they would be in the catalog, but I don't see them. There are however, other brands of underpants with insertable pads. The catalog is from

            Home Delivery Incontinent Supplies Co., Inc.

            1215 Dielman Industrial Ct.

            Olivette, MO 63132

            1-800-538-1036

            and a web page at http://www.hdisnet.com

Update:

I received a sample pack from Humanicare International with the incontinent pants for kids that I had requested. They have boy and girl underpants that look like regular underwear, a pad is stuck to a water proof (crotch) panel. The pads are shaped like a T, and look like they cover enough area without being seen from the top. They hold 360cc. The underpants come with pink bow and lace, or a regular white boy brief, or a front-opening one with velcro. These three are called the Prevent Plus Training Panty/Brief. The Dignity Plus also has child sizes (difference is that the pad is slipped into a pocket).

                                    size                  waist               hip                               weight

Prevent Plus                4T                    21.5-22"          19-20"             28-38 lb.

                                    6                      22.5-23"          21-23"             39-49 lb.

                                    8                      23.5-24"          24-26"             50-59 lb.

 

Dignity Plus                                        20"                  20-23"

                                                            24"                  24-29"

They can be ordered by calling 1-800-631-5270, fax 732-214-0666.

The pants are about $6.00 each (when ordered without the fancy box), and the pads are $10.25 for a bag of 20, or when ordered by the case (8 bags), the price is the same ($82.00) but no shipping is charged. Personally I think any pad that you make or already like might work, the advantage is that these pants have a water proof panel. I remember using flannel diaper liners when my kids were babies, which might work for little leaks. The pants are 50/50 cotton/polyester, machine washable. The pads are disposable, but many diaper liner products are washable (I got mine through baby catalogs). There is elastic around the legs, although I'm not sure how snug

From Nova

I called the 1 800 number that Marti posted, and they are sending me a free sample of pants and liners to look at and try out. Its definitely worth the inquiry.

From Nancy (Mom of Ross)

You can get the dignity Prevent Plus training pad from Express medical supply at 1-800-633-2139. They have a catalog with a page for Youth which has a variety of pants which you wear with pads. I bought both the boys underwear and the boys velcro pull away. The velcro pull away version has a little more gather around the legs and for Ross the size 4 was too small whereas the boys underwear size four was just right. We are not using them for two main problems. First, if Ross had a large pee none of the pads could hold the pee, he would have to change his pants. I tried the Dignity preven plus training pad, holds 10 oz; the dignity plus liners holds 9 oz and finally I tried the ExtraCare super absorbent holds 2 cups (made by different company). These 2 cup holders where a joke since they did not have a plastic backing to the pad it would soak through and get the pants wet. Second putting the pads in the pants was not that easy for Ross or me to do even with the velcro pullaway.

From Laurie O. (Mom to Hunter, 7 mo, Caudal Regression)

Here’s a toll free number for samples of Good Nites Pants for children 45 lbs and over. I talked to a real person who asks the weight of the child. Sample pack contains 2 pairs plus coupons. 1-800-324-5808.

Diaper/Underwear Liners and Homemade Variations

Diaper liners are woven liners kind of like the texture of a coffee filter. They're made by Gerber and come in a blue box with about 100 inside. They can be found at Toys R Us or Walmart They can be used inside underwear to catch small leakage or smears.

From Peggy (Mom of Sean, 6, IA)

My son uses an early trainer type of pants underneath his swimsuit that keeps everything in. It's called Dappi made by TL care, I bought them at Walmart, the face is made out of nylon taffeta the middle rayon/poly felt and the inner portion is 100% cotton.

From Connie

I purchased a vinyl tablecloth (off the clearance table) cut it up in the proper size, took cloth diapers, cut them to the proper size, sewed them to the back side of the tablecloth. It works pretty well. The vinyl side provides the wetness protection, and the cloth diaper will absorb the wetness, and still be soft. These were not thick enough to be noticeable through "undies." One of the nice things about them, were, if we were out, I didn't feel guilty about throwing them away if they were used, but, at home, they would wash up just fine.

From DM (Mom of Ian, 8)

To line underwear, I used to buy a roll of "flannel" from our hospital (the roll was about 6 inches wide, thin soft white cloth- we use it in Emergency to wrap people's limbs before casts were applied, or for under tensor/ACE bandages), and double-sided tape for Ian's underwear. I'd cut a rectangle of this flannel about the length of a maxi pad, cut two slits in the middle part like "wings", and I'd tape this into his undies. It worked for the firmer soilings he had, and it was soft and absorbent on the rectal prolapse he had at the time, but it was truthfully quite useless for catching anything more loose. For his jumbo loose soilings, nothing worked anyway, except changing immediately. So we found this little layer of soft cloth gave him some relief, and a bit of comfort and time to get to the bathroom. We would peel it off and throw it away after use. I suppose one could put a layer of plastic beneath it, to waterproof it.

From Kathleen (Mom to Sean, 8, HIA)

I made pads for Sean. They were large, roughly triangular shape, made of a bed sheet on one side and plastic from a mattress encloser on the other side, sewn together. I adhered them to his underpants with 3M medical dispersible tape. When washed in hot water, the tape disperses. As of 6 years old, Sean could replace the pad by himself. The 3M Water Soluble tape is sticky on both sides. I found a businessman in September 1996 who had some tape he would sell to us for $7.00 per roll. A pull-thru Network member contacted him within the last 6 months and she reported back to me that he will still sell it. Here's who to contact: Chuck Lovell, Marble Medical, 1951 Raymond Diehl Business Lane, Suite C, Tallahasee, Florida, 32308, (904) 385-4441. Be sure to wash the pads & underwear in the hottest water your machine provides, to help the tape dissolve.

Another tape is Hy Tape (800) 248-0101

Making Training Pants Water Proof

From the Oops Book

Parents may like to use pants with plastic stitched into them to make them waterproof. Trainer pants, which are already slightly padded, can have plastic sewn between the outer material and the padding. These allow for protection without the bulk and feeling of a diaper.

Bags for Hiding Accident Related (Soiled) Items

Bonnie M. (Mom to Amy ,10 years old)

I called the BARNA company who manufactures the bags. The brand name is "Diaper Sacks" and they are not carried outside the US. In the US they are available at Wal-Mart, K-Mart (Big K) and Target stores. They are sold on a few web sites. Those are: www.babycenter.com, www.rightstart.com, and www.toytime.com.  I checked out these web site and find that they also only ship to the US or US territories. But on the Right Start web site I saw a listing for another product called 'Bags on Board'. It is a small cylinder shaped dispenser that holds 24 bags and is refillable. It is made so that it could be clipped on the diaper bag or stroller. I liked it because it is so small and would be convenient for putting in the emergency box/bag of older kids. It also is "plain" - no mention of diaper on the container. Also good for older kids.

            The very helpful lady at BARNA also referred me to another company that distributes another of their products - 'Discretion' disposal bags. The company is Home Delivery of Incontinence Supplies (HDIS). These bags are basically the same as the Diaper Sacks but they are white (instead of blue) and unscented. They are produced with adults and older children in mind. Amy thinks the baby powder scent of Diaper Sacks is OK but an older person might not. And they may just balk at any product with the word 'diaper' in it. These bags come 50 to the box and cost $4.99. Their web site is www.hdis.com. You can call them at 800/269-4663. They carry a wide range of disposable and washable undergarments and other supplies. They specialize in discrete home delivery.

Flushabe Wipes

From nancy

Kids Fresh Wipes feel very much like regular baby wipes...although a little thicker maybe than some of the bargain brands. They are smaller in size and come in a smaller neon colored rectangular container. They can be flushed down the toilet! I buy them at our local Medic drugstore. The are a Charmin product. distributed by Proctor & Gamble.

From Donna

I have tried the neon boxed version from Charmin and the white boxed version from Kleenex. I cannot tell the difference. The Kleenex ones are usually in the grocery store on the paper towel/toilet paper isle. They are made by Kleenex and are called Cottonelle Flushable Moist Wipes. They come in a hard plastic box, or you can buy the refills that are NOT in the plastic box.

Washable Briefs that Retain Water

From Lisa

I was in Rite Aid drug store and saw reusable washable briefs. It claims to be a complete garment, not a pad system or a diaper. It does not say anything about latex. It is made by Wearever Health Care Products 1-800-307-4968 or www.wearhydrex.com. I went to the web page it is available in children’s & adult sizes. It also claims to hold a lot of liquid. Washable up to about 200 times. Cost approx. 10.00 ea.

Washable Underwear that Comes Off Like a Diaper (for privacy in public bathrooms)

From Alivel

I modified regular underwear by cutting it up on the sides and stitching "velcro" to all 4 cut pieces. This helped him clean himself up when he had accidents at school in the "public" bathrooms quickly, without having to remove his shoes, socks and pants. Here are the steps to make it”

1. Buy the regular underwear, a little bigger than the regular size (sriram is 6 1/2 so I buy about 8 size)

2. Buy velcro. You can get velcro by the yard at Walmart or any fabric store. Buy the velcro that is stitchable - has sewing needle pictures on it. I bought the white colored velcro that is about 2 inches in width. Do not try the soft velcro, even though it will be more comfortable for the child, because it becomes inoperative after a couple of washes

3. Cut up the underwear at both the sides. It will look kind of like a diaper when you lay it flat after cutting

4. Stitch the velcro up with the rough/sticky side on the front and the side that has lot of fibers at the back so when the child folds it, the velcro will seal the underwear

5. I played with just how much velcro to use at the beginning and whether it needs to be all over the length of the cut (sriram likes it this way) or one piece at the bottom and one at the top of the cut, and went with what will actually seal the underwear better. I also tried reusing the velcro after my son outgrew the underwear but the velcro loses its function after several hot water washes so it won't work

Wearing Double Pull-ups

Catherine (Mom to Zachary, 6, IA)

Do you think she could wear two layers of pullups so she could just tear the sides on the inside one at lunch time and then she would have a dry one underneath for the rest of the day?

Saving Money on Pull-ups

From Sue (Mom to Emily)

If you are using pullups on a regular basis, you can contact the company and tell them that you use them for a "special needs" kid and they will send you coupons.... helps a lot.

Wearing Onesies

From Shirley (mom to Chantel, VACTERL)

Biobottoms Their phone number is 1(800) 766-1254., website listed also. http://www.biobottoms.com For the people in the group who use "onesies" to hold pull-ups up or give ostomy bags extra support, I noticed the catalog carries what they call "Tummy Toppers." They go up to size 4T and come in many different styles and colors, some of which could be used for boys or girls. They have T-shirts, turtlenecks and other styles, all with snap crotches.

Anal Plug

From Anne (Mom to Michael, 2.5yrs, HIA)

Date: Fri, 6 Feb. 1998

About a year ago I ran across a continence product called the 'Anal Plug'. It was mentioned by someone on their personal web page describing their own history of IA. I tracked down the company, called Coloplast, and 6 months later, after months of intermittent email, I finally got a brochure on it. It turns out the product is only distributed in Europe. Anyway, I recently visited Coloplast's web site http://www.coloplast.com/contin.htm and they are now showing a picture of the anal plug. I am not sure whether it is distributed in the US yet. From what I can tell from the brochure, the anal plug is very much like those birth control sponges with a long gauze string attached. It claims that it can be left in for up to 12 hours. They have them in both child and adult sizes. I am not looking at such a device as a substitute for enemas, since this is necessary to make sure that the rectum empties every day. What I thought it could provide is some assurance that there will not be unexpected accidents between enemas. Also, I thought it might be useful for some of the kids who are currently prevented from swimming in public pools due to the risk of accidents. Of course it is a relatively new product so I don't know what the implications are of having something inserted long term in your rectum. My initial feeling is that it might have some of the same issues as tampons. Additionally I am a little concerned about whether it would possibly reduce sensation in the sphincter since it would be continually exerting pressure on it. But, for those who know that they have little or no sensation, there is little to be lost.

From Muriel (adult, IA)

The anal plug is very frequently used by people with IA in the Netherlands. However, I’ve never heard of anyone being very positive about them.

Strapping the Buttocks from the Oops Book

This method can be used when it is important that the child does not soil (swimming, during school hours, etc). Strapping can be used all of the time, except for the emptying of the bowel. However, if the strapping is left on too long and the bowel is not emptied, constipation will occur. Strapping should not be used for long periods when the child is learning to answer feeling in the rectum, and is having several bowel actions a day. Strapping is not effective if the stool is very soft or the child has diarrhea.

Applying the Tape

It is necessary to try different types of tape for effectiveness (particularly in water) and avoiding adverse reactions (such as rashes). Many types have been used including elastic adhesive tapes, non allergy tapes, waterproof adhesive tape and electricians tape. The tape must be applied very low on the buttocks. It will be under him when he sits down. Cut a piece of tape 15 to 20 cm. long (depending upon the size of the child). Look for the position of the anus, attach one end of the tape to one buttock. While holding the buttocks tightly together, attach the other end of the tape to the other buttock with the tape going over the anus. Some children have tender skins. If taping is to be tried, it may be necessary to do the following:

First, place some non-allergic tape on each buttock where the tape is to be placed, then pull the buttocks tightly together and apply the stronger tape.

OR

Cover a section of each buttock with see through adhesive, such as Op-site, so the parents can observe the condition of the skin. These pieces can remain in place up to a week, and allows the tensioned adhesive to be taken on and off without harm to the skin.

In addition, a little Tinct. Benz Co. or Methylated Spirits applied regularly prior to the tape, will help to toughen up the skin.

Additional Precautions

If the anus is quite lax, additional precautions can be used:

- A small piece of soft paper (ex. 1/4 of a facial tissue or 1/2 of a toilet paper square) can be folded and placed over the anus. Then strap the buttocks together. If doing this for a girl, use some adhesive to hold the paper in place, and check that it is still there when the tape is removed, as it can slip down into the vagina.

- If the child has NO feeling in the anus or rectum, a tampon can be inserted into the rectum, using some adhesive to hold the string. Then strap the buttocks. If this is used frequently on a child who does have some feeling in the rectum, he will quickly stop taking any notice of the messages of fullness and this will set back his training program.

Supplies for Special Needs Children

Columbia Medical - 1-800-454-6612 or http://www.columbiamedical.com

http://www.disabilitymall.com/incontin.htm has a lot of incontinence products

www.mypoolpal.com. has swim diapers up to adults. Check the special needs category (888-Pool-Pal)

Associated Tips from PTN Moms

Tips Re: Starting or Changing Bowel Mgt. Techniques

Make sure the child is cleaned out before starting something new. When the child is already constipated and backed up, it totally changes the way something will work

Tips Re: Identifying the Correct Dosage

From Kathleen

We know he is taking an effective amount of laxative when he makes it to the toilet every time, does not soil, and has large bms in the toilet. Further confirmation is received by x-rays, and by doing an enema. If not much stool is produced by the enema, then the laxative dosage must be right.

From Anne

What I have learned over the past year is that you really have to stick with something for quite a while and wait for a stable pattern to evolve before making any judgments as to whether something will work or not. It seems like each new technique, like Senokot, lactulose, babylax, or enemas have an initial period of instability during which the body is getting accustomed to it. At the same time the parents are attempting to compensate for the changing bowel patterns with changing diet which further adds to the instability.

From the Oops Book

Each method should be tried for at least a few weeks. Try the same method again even though it did not work the first time.

Tips Re: Administering Laxatives

Getting Kids to Take It

Mix in juice or oatmeal (malted barley soup, sorbitol)

Mix mineral oil in chocolate syrup or a chocolate milk shake (makes it creamier)

Mix MoM in strawberry syrup

Mix lactulose in milk or apple juice and stir well.

Mix lactulose in ginger ale or 7 up (won’t this exasperate the gas problems?)

Put a tiny bit of strawberry extract in a tablespoon of lactulose and put it in a syringe

Mix metamucil in apple juice

Mix 1 tsp. concentrated Metamucil in 1 Tbsp. vanilla yogurt.

Mix sorbitol in baby food fruit or plain yogurt w/ pulverized fresh fruit

Add a little bit of strawberry extract to lactulose and give in a medicine dropper

Mix Senokot (liquid) in yogurt (Cyndy)

Wet your teaspoon. Shake off all excess water. Coat the bottom side of the spoon in something powdery like kool aid, jello, or even sugar. Then, put the medicine in the spoon

Mix psyllium with lemonade and let it sit for a few minutes until it jells like jello, Eat w/ a spoon.

From Dan (adult, IA)

Some of the stimulant laxatives, in my experience, seem to cause a bit of nausea if taken on an empty stomach. When I take Senna, I make sure there is something in my stomach already and I follow it up with a chaser of some sort.

From Cynthia (mom to Drew, IA, VATER)

I have always given Drew all his meds with a syringe. He seems to taste it less than with a spoon, cup, or other method. I guess it goes over less of his tongue.

From Pat (mom to Kevin)

Try grinding the senokot granules in a food grinder. I did this and it makes a powder which resembles Nestle's chocolate milk powder. I have to sneak it into Kevin's chocolate milk, but it seems to work.

From Frank (dad to Jordan, 1.5yrs, HD)

We used senna tea for our son Jordan. It is sold under the name 'smooth move tea' in health foods stores and in the health food sections of supermarkets. We made it per the instructions and diluted it 50% with juice. We gave Jordan 4 oz. and it seemed to work. One problem is that we don't know how this compares to the dose of senokot. Jordan would not take the senokot, he couldn't stand the taste.

From Liz (mom to Noah, HIA)

You can also mix mineral oil in any food they will take it in (pudding, gravy, applesauce, yogurt, etc.). A third option that sometimes worked with us was to put it in a drink and swish it in the blender (milkshake, chocolate milk, koolaid, nectar). The faster they drink it the less will settle to the bottom, whirring it in the blender helps to aerate it and make it easier to get down. There is also a mineral oil type medication that is called Kondremul - it is emulsified and has a more pleasant taste and sensation than ordinary Mineral Oil.

From Dick

We live in Washington, DC where there is a pharmacy that will flavor medicines in a variety of flavors. The pharmacy is called the Center Pharmacy at 4900 Massachusetts Avenue (for those who live in DC) and for those who do not and want to call to see if the flavors are patented and you can get them in other cities, the number is 202-363-9240. We have given our daughter, who is now 2 years old, Milk of Magnesia (1 tsp. at night for about 6 months), flavored vanilla and we put it in her milk at night.

From Nancy (Mom of Ross, TCS incontinent)

I just gave Ross a metamucil cocktail this morning and he didn't even know he had it. I mixed 1/2 tsp w/8+ oz of juicy juice. I bought the generic and it doesn't have any taste. Its called Natural Vegetable Powder Natural Psyllium Fiber and says it compares to the ingredients to metamucil.

Note: Metamucil Fiber Wafers come in 2 flavors - cinnamon spice and apple cinnamon. A 2 wafer dose provides 6g. of fiber.

Timing of Dosages

Give at the EXACT same time every day

From the Oops Book

Laxatives must be given at least one hour prior to all other medicines to ensure the desired effect of each medication.

From Liz (mom to Noah, HIA)

Noah gets stomach aches badly if we give any of his medications when his tummy is still full, so we try to do them as far in-between meals or before meals whenever possible. This cuts down on stomach aches, and vomiting. Michael may also be having stomach aches if there is a lot of poop to move out.

From Mary (mom to Patrick, 3.5yrs, HIA)

For the past 2 1/2 years, we have given Patrick Sennakot every night and he would usually poop the next morning some time, maybe twice, sometimes 3 times. Since starting preschool in Sept. we have been giving him a glycerin suppository each morning because I don't want him pooping that nasty smelling poop at school. I called Dee Shur one day and she suggested giving him the Sennakot in the morning, so he would poop in the evening, something that never dawned on me. So we started on this routine and started giving him those Metamucil crackers twice during the day. He is now potty training himself. He goes every day somewhere between 2 and 5 pm.

From: Sue (mom to Emily, 2.5)

Interesting point to think about is that every time she is on an antibiotic, she automatically has a motility problem immediately following the course of antibiotics. Sometimes we have to remove her from the drugs before a cycle is complete because of severe runs, other times (even with the same drug) she will do fine for the entire cycle. Almost every time she comes off a cycle, she goes into constipation mode.......and then we get her going again........and then she goes into constipation mode........and then we get her going again....... and you know what happens next. We have found that if we keep her on the mineral oil every day, feast or famine, she evens herself out much better than if we start and stop her. You may want to try it that way, too.

Varying Amount of the Dosage

Q. I had always heard that you should give the same dosage of laxatives every day. I am wondering if this is really a good idea. Some days, Stephen eats more than others. Does anyone out there have a toilet trained child that varies the dosage depending upon food intake? Do most people keep the dosage constant unless signs of constipation or diarrhea occur? I am talking about varying the dose preemptively based upon food intake that day. I am wondering if this is a good idea or a bad one.

A1. Our son is 4 1/2 and we have always kept his dosage consistent. We do not increase the dosage when Mark has had a lot to eat, and likewise, we do not reduce the dosage when he has had a slow day of eating. We do adjust when he is sick esp. - with diarrhea. Then we give him none until a day after he is better.

Note: several other responses were similar to this one.

A2. I adjust dosage based on type of food I eat but not the amount.. I think. It's becoming more a sense of "I feel like this... I should do this".. much more reactive than proactive. As parents I would guess your reactiveness could be too little or too much compared to what is really needed... When your child manages this himself, he will intuitively know what's need because he can feel it better.

Dealing with Gas

From Kimberly (mom to Terran, HD)

I find the mineral oil works best when I mix it with oatmeal or peaches. Terran does not get the cramps he used to as much and his distention is better..

From Kim (Adult, total colon HD)

Metamucil absorbs a lot of the acid that burns little butts and makes nice slippery poopies. Charcoal and yogurt are good for the gas that he'll get.

From Be Good to Your Gut by Pat Baird, M.A., R.D.

For some people, acidophilus bacteria in yogurt slows down gas production.

Gulping food, chewing gum, chewing with your mouth open, and drinking carbonated beverages are other means by which too much air gets into your stomach.

Gas producing foods include:

Fruits - raw apples, apple juice, avocado, bananas, cantaloupe, honeydew, grapes, raisins, watermelon

Vegetables - beans, broccoli, brussel sprouts, cabbage, cauliflower, corn, cucumbers, leeks, onions, split peas, lentils, green pepper, radishes, scallions, shallots, soybeans

Cereals and Grains - bran cereals, excessive quantities of wheat products

Miscellaneous - carbonated beverages, chewing gum, hard candy, nuts, mannitol, sorbitol, fats and high fat foods, rich sauces, gravies

From Dietary Considerations When You Have an Intestinal Stoma by Florence Weber-Javers, RN, CETN

printed in Vol. 24, No. 1 of the Ostomy Insights. The UOA (United ostomy Association can be reached at (800) 826-0826. Note: this article was intended for people with ostomies

Gas in the intestinal tract can be from two different sources - from swallowed air or from bacterial action on undigested carbohydrates. If the gas is from swallowed air, try to be careful when eating to chew foods well and not to wash down food with liquids. Drink your liquids before or after the meal instead of with your food. Drinking through straws, chewing gum, and smoking can also cause swallowed air. Gas formed by bacterial action on undigested carbohydrates is related to the food you eat. It usually takes approximately six hours to pass gas from the time you ate the food causing the gas. Foods that cause gas include :

string or dried beans, mushrooms, beer, carbonated drinks, cucumbers, onions, brussel sprouts, peas, spinach, corn, cabbage, broccoli, radishes, cauliflower, yeast, dairy products

 

Tips Re: BabyLax Suppositories

Wake the baby up at night and do it while he is very sleepy

From Catherine (mom to Zachary, 5, IA.edu)

If you do the solid glycerin suppositories, you should use your little finger to put it in and that won't hurt her. You should use a glove or finger cot more to protect her from scratches from your nails which can become infected than for your protection.

Note: You may want to consider using latex free finger cots and gloves

From Roseann (Mom to Carl, IA)

I recommend giving the babylax at the same time every day after a meal to take advantage of peristalsis. Solid glycerine suppositories can be found in any pharmacy and in the laxative section of most grocery stores. They usually come in a small plastic jar, maybe 20 suppositories to a jar. The brand name suppositories are more expensive and larger, whereas the house brand we buy (Marquee, I think) is smaller and cheaper and works just fine.

From Anne

Solid babylax may not be as effective as liquid - could be because they aren’t inserted far enough or because they are placed in a mass of stool rather than against the rectal wall as they should be.

 

Entertainment on the Toilet

From Kathleen (Mom to Sean, 7 1/2, HIA)

Do you have a TV tray in front of your daughter's toilet? The possibilities are endless. My son paints plaster ornaments, does origami, builds Legos or Capsela, does his homework, plays with magnets, colors, etc. He wears a sheet with a hole cut in the middle and elastic sewn around it, so nothing falls into the toilet.

What PTN Adults Used Growing Up

From Gerry (Adult, HD, 45)

When I was in my teens and twenties I was taking Senokot tablets sometimes up to 6 a day. I have not taken anything else as an adult.

What PTL Members Are Using

Bulk Forming Laxatives

From Mike (Dad to Brendon, HIA)

We have had great results with Psyllium powder. Half a teaspoon for breakfast. If we miss a day we start to run into problems. We have not needed the dreaded babylax or lactulose since we started with it. It is cheap and a lasts a long time.

From Laura (mom to Brandon, 5, HIA and neurogenic bladder)

We have been giving Brandon Metamucil since he was about 15 mos. old. With it, his stools are formed but soft. Without it, they pretty much are liquidy. I tried Citrucel and Metamucil and found the Metamucil to be the better choice for Brandon. He didn't experience an unusual amount of gas or anything. Metamucil seemed to mix better than the Citrucel did. The Citrucel had little bits of "pulp" stuff floating around in it that wouldn't mix no matter how long I stirred it. However, you do have to give it quick because the liquid turns solid. I mixed the Metamucil in just enough liquid to make it easy to administer with a medicine dropper, gave it to Brandon via the med. dropper, and then followed with the rest of the liquid in a cup. We started giving the Metamucil to try to "slow" down Brandon's stool. At that time it was constantly coming out and very watery. The Metamucil seemed to slow it down somewhat and bulk it up.

From Suzin (adult, HIA)

Managing chronic constipation while having no internal or external sphincter is a challenge for sure. I do have adequate control when I use a combination of bulk forming laxatives, diet (especially prune juice and dried fruits), and mini-pads. For my particular system, products containing senna give me far less control and allow no room for error in the daily balancing act. I use bowel stimulant laxatives only when absolutely necessary, and not on a work day, so that I can hang out at home until the action has stopped. I use something I buy at a health food store. It's called Nature's Cleanser, made by Nature's Plus. It's mostly psyllium husks with some herbal additives which seem to have a slight bowel stimulant action but nothing like the dynamite/disaster of senna. I mix the powder in prune juice or more or less alternate with other juices depending on the equation I choose to gamble on that evening. And gamble it is! I had been using Konsyl, which has twice the action of Metamucil, but have gone back to Nature's Cleanser. I find the bulk laxatives which come in capsule form are useless. They really need to be in powder form, mixed with liquid, as gross as it is.

From Gretchen (Mom to Franklin, 22 mos. , IA)

For what it's worth, we had to be really careful with how much Juice Plus we gave Franklin because it would also give him frequent loose stools. However, we determined that it was not the fiber that was causing the problem, it was the juice. So, we quit giving him the Juice Plus. If you use the fine grain orange-flavored Metamucil mixed with Gatorade (or any other non-juice drink) and drink it fairly quickly (it thickens to a pretty nasty consistency if it sits for any length of time), it looks/tastes/feels pretty much like juice. We use "smooth texture" Metamucil and, as far as I know, there is not a version especially for kids. The label says to give kids half of the adult dose mixed with the same amount of water for choking reasons. However, we have found that as long as Franklin drinks it fairly quickly it does not present any more of choking hazard than any other juice.

From Kathleen (Mom to Sean)

The Metamucil 800 # is  1-800-983-4237. Sean takes the orange flavor, smooth texture. I divide 1 tablespoon into 4 equal parts , and add 5 ounces of water to each 1/4 tablespoon. I give him the four glasses over an hour or 1 1/2 hours, in the morning. That way he wouldn't get a stomach ache from it. MAKE SURE YOU DON'T MISTAKE THE SUGAR FREE FOR THE REGULAR. The daily dosage of SUGAR FREE is one TEASPOON and the daily dose of regular is one TABLESPOON.

From Lori P (mom to Karly, 6 VATER/cloaca.com)

We have used the Metamucil wafers with our daughter , Karly. They are called Metamucil Fiber Wafers and they come in 2 flavors: cinnamon spice and apple cinnamon. A 2 wafer dose gives you 6g of dietary fiber.

Note: another mom posted that there are 3g of fiber per teaspoon of the regular (not sugar free) powder

From Mike

We have been using Yerba Prima Psyllium Husks Powder for the last 4 months or so and we are doing well with it. We have been able to stop the lactulose. We use half a teaspoon on his breakfast cereal which is weet bix and milk. It stops things going hard and dry. You can see it coming through because it makes things moist soft and stretchy(sounds strange I know). We still get some occasional blockages from the food that does not have psyllium in it but these are fixed with the use of glycerin suppositories. Before psyllium the suppositories did not work well. We think if we gave him psyllium twice a day that this would stop as well. We are very happy with Psyllium. It may pay to use smaller amounts to start with as it takes a bit of getting used to. You can try adding cinnamon and apple to the psyllium and cereal to make it more palatable. The weet bix we use are reasonably high in fibre as well. The psyllium is on sale in health food shops and we are still only half way through our first 12 oz container. At this rate it will be 3 dollars a month. Not bad. It goes a long way because it expands slowly on contact with water and does

not release the water. Because of this, you can’t let it sit for too long once the milk is on.

From Deidre

Maltsupex is a bulk forming laxative derived from barley. It worked great with no gas or upset stomach in our case. It is usually not out on the counter. You have to ask the pharmacist for it because it is so expensive.

From Babette, (mom to Michael, 4.5yrs., hd)

We have used Maltsupex with good results. We used it before the ostomy and use it now also. It is very expensive, but worth it in my opinion. Very minimal side effects.

Note: Maltsuprex is not the same thing as malt soup extract.

Lactulose

From Carrie (mom to Syndey,2, IA, VSD, cloaca, single kidney)

When we first started taking lactulose we were suppose to have it 2x a day. We found that the 2nd dose, which we gave at dinner time really didn't seem to make a difference. It seems, for us, to take a dose at lunch time and by 4 or 5 she has emptied. Usually in one large stool. We don't limit Syd's eating really so if she eats cheese and/or bananas then she might stain the next day a few times before she stools. We started at a low dosage and now give her about 3 - 4 tsp. a day/or every other. Syd is almost 3 but is only about 28 lbs.

From Bonnie (Mom to Patrick)

We were on the MoM routine for a while and never quite got it to work by itself - we always had to use a babylax. Kathie in Pena's office said to increase the MOM and insisted on the use of fiber. Well that's wonderful if you have a kid who will eat. And I’m sure it has worked (and still works) for many. But it was a disaster for us. It was either constipation or diarrhea (always with very painful skin breakdown). No happy medium. Finally Patrick's pediatrician Rx'ed Lactulose. I LOVE THAT STUFF. When Patrick was on MOM and Colace his poop was always hard no matter what we did (unless it was diarrhea) and he never went without a babylax. Since Lactulose, it's rarely hard, thus no need to adjust doses and end up with diarrhea. After he started the lactulose his poop got soft but he still didn't go on his own without the BabyLax. That worried me cuz everything that Pena told us, he should have had better results. THEN after his tethered cord was released. - about 6 weeks later - I noticed that he had not needed a babylax in almost a week. I never expected that since everyone said the bowel/bladder thing doesn't improve. I guess it hadn't damaged anything yet..(yeahhhh!)

From Jeana (Mom to Grayson)

We have been relatively successful with a daily dose of Lactulose for Grayson. What I have found is that drinking lots of fluid when Grayson gets the dose helps. Lactulose is a laxative that draws water into the bowel to soften it, so lots of liquid is a necessity. I also give him only one large dose per day. Grayson's RX says up to 2 t. twice a day. I give him almost 2 t. at lunch time with baby food prunes every day. This way, he has a pretty decent bm at the same time every day. (Sometimes we'll go ahead an do an enema afterwards to completely clean him out.) One thing I have found is that if he starts getting constipated, the Lactulose stops being effective. We really have to keep him clean on a daily basis for it to work. We traveled over the weekend and Grayson started getting constipated - it took us several days to get him back on his schedule.

 

MoM

From Christine (mom to Micheal, 22 months)

We have Michael on 1/4 tsp. of MOM 2x's a day, morning and night. My surgeon explained to us that the only way for the MOM to work properly is to balance it, and the only way to do that is to administer the same dosage twice a day. I have to say for the most part it works fairly well. I know when he’s going to go, at about what time. I just never know what the consistency is going to be.

 

Mineral Oil

From Sandra (Mom to Ryan, middle IA, HD? sacral abnormalities)

Using mineral oil

From Cathy  (Mom to Andrew)

You can buy Kondremul OTC. Andrew took it for a few years. It is a mineral oil base. However, Andrew did much better with it than with mineral oil or Lactulose.

 

Senokot

Dosages Info from Various Members

18lbs., 8 mos., 1 tsp. children’s senokot from Mary (Mom to Katherine)

25lbs., 17mos.., exactly in between 1/2 and 3/4 tsp. from Roxanne (Mom to Remi)

27lbs, 2yrs., 3/4tsp. from Betsy (mom to Jennifer)

27lbs., 2.5yrs., 4.5ml plus metamucil from Suzanne (mom to Atticus)

30lbs., 2.5yrs. 1.6 to 1.8 tsp. ((8-9ml) and 1Tbsp. metamucil smooth texture orange flavor. Gives the senna t night and the metamucil in the morning. From Gretchen (Mom to Franklin)

35lbs., 4yrs., 9ml in yogurt in the morning, and 3/4tsp. metamucil in apple juice in the morning From Cyndy (Mom to Sam)

31lbs., 4 yrs., 2tsp. (10ml)) after lunch (1:00) and has a single BM between 6 & 8PM that takes approx. 45-60 min. on the potty to get everything out.

42.lbs. 8.5ml

47lbs., 5yrs, 13.4ml before AM snacktime and poops between 5 and 8pm. Also, has 1Tbsp. of metamucil every morning w/ juice. From Seema (Mom to Samah)

6.5yr, 2.75tsp. plus 2 dosages of metamucil

Answers from Gretchen (Mom to Franklin) and Jane (Mom to Sarah)

Q: Do any of your kids on senokot need occasional enemas/babylax or do you just slightly raise the dose the next day (if for instance, they eat too much of a constipating food)?

A1: Dr. Pena made me completely paranoid about Franklin emptying his bowels every day. On those very rare occasions when Franklin has not pooped by early afternoon, we give him a Babylax. Obviously, waiting an extra day wouldn't harm him, but I am afraid of getting out of the routine that works so well (10.5 cc's of Senokot at night and Metamucil in the mornings) that I haven't risked it.

A2: The only time we use babylax is when Sarah is going through a growth spurt and her Senokot is not working as well as it normally does. It takes us a few days to figure out the cause, but in those cases, we added babylax just to get things moving and we up her dosage of Senokot.

 

Q: Do you try to keep the dose consistent even if their appetite fluctuates?

A: Yes, we keep a constant dose as it is way too stressful and confusing to try to monitor their appetites and adjust the dosage accordingly. Like most young children, Franklin's food intake varies considerably, but we haven't found any need to adjust his Senokot, even if we could figure out how to.

A2: No. When Sarah is sick, she sometimes gets diarheah and we do not give senokot. There seems to be no need since she is constantly pooping and there is really no way to measure the volume (she goes in the potty) compared to what she ate - she eats so little when she's sick! We can always tell she is getting better when she doesn't have diarrhea for several hours at a time. The next day we begin giving senokot again at the same dose we left off at, usually regardless of what she ate that day. Once in a great while I or her daycare will forget to give her a dose and we simply give her a slightly larger dose at the usual time the next day. She has never seemed the worse for wear except that she will sometimes have BM smudging in her pull-up at potty time because her body is used to going at a certain time now. I remember when she was teething and didn't eat enough to keep a bird alive, I think we gave her the same dosage but the BM just came out looser and quicker. It apparently didn't cause any damage.

 

One mom wrote: When he has too many bm's through the day, it usually indicates that it is time to go up 1/2 ml.

While another said, If ever it is more than one, I up the dose by a 1/4 tsp. until it becomes only 1 bm per day.

Dosage Timing

We are able to adjust her bm time to some degree - if we need her to move earlier, giving it on an empty stomach makes her move earlier. If we need to delay it, giving a slice of cheese or a chocolate candy with it will do it by slowing her stomach emptying time.

From Jane (mom to Sarah, cloaca, vesicostomy)

Date: Sun, 18 Jan 1998

We give Sarah (19 mos.) 1 tablespoon (1Tblsp = 3 tsp.) of Senokot before bed every night. It is the limit that the back of the package says, and we give it to her all at once instead of half of it twice a day. It completely evacuates whatever is in her bowels, faithfully, every night and she has never had an adverse reaction. Like you, We also had a big panic when we couldn’t find the children's Senokot on the shelf anymore - they have taken it off to reformulate it the story goes, so we switched to regular adult Senokot Liquid - it has the exact same amount of sennosides per tsp. as the children’s' the only difference being it contains 7% alcohol and the children's doesn’t.(compare the package backs). It worked just as well as the children's Senokot. but as soon as the Children's version comes back, we will use that. By the way, if we are in a pinch and can’t find senokot or something, we substitute Milk of Magnesia, 1 tablespoon, instead. It doesn’t work as well, but it DOES get all the poop out eventually. Senokot gets it out overnight. MOM gets it out over the whole day.

From Mindy (mom to Zachary)

Zack had very loose stools on Lactulose and he pooped straight through the day but he is doing much better on Senokot. I found that within two weeks of starting Zack on the Senokot, he began having one to two large poops each day. Sometimes he has a "warning poop" where he poops a little bit about an hour before he really starts going. His poops tend to be pretty mushy and not well formed but I am working on it. He does have fewer number of poops when he has had more solids the day before (as opposed to formula bottles). Metamucil just gave Zack gas.

From Mary (Intensive Care Nurse, Patrick, HIA, no fistula 2.5yrs)

Started giving 1/2 tsp. Sennakot every night at about 1.5 yrs. She also gives Patrick prune paste and fresh blueberries for breakfast every morning. (Note: she missed one morning and had to give an enema that night.) It took a year of experimenting to settle into a routine. At age 2, she started giving 1 tsp. at night and if he doesn’t have a good poop the next day, the next night he gets 1.25 tsp.

From Michael (father of 2 HD girls, 2.5 and 4 yrs)

Four yr. old daughter recently toilet trained. Used 1 tsp. Sennakot every night since she was one yr. At first poops were runny but now they are normal. She poops 2-3 times per day.

From Susan (adult, HIA)

I've been experimenting with Correctal Bisacodyl Stimulant Laxative. It seems to allow me more control than senna products or milk of magnesia, because the poop doesn't come through as fast or with as much force, even if I've gotten diarrhea from it. So there's more room for error in figuring the proper dose. Fortunately, it gives me clear abdominal discomfort in time to let me get to the bathroom and then to know I need to stay there because more is coming.

From Dan (adult, IA)

For myself, I can report exactly the opposite results that Susan reported. Senna sets things in motion, in a fairly controlled [controllable] fashion, whereas 1 tiny little bisacodyl pill tears through me like a freight train.

From Dan (adult, IA)

I have been taking a daily 1/2 pill dose of Senna (CVS brand Senna-C) at between 5:30pm and 7pm every day and have been experiencing nothing but regularity ever since. That early evening dose churns around all night and usually about an hour after I wake up _it's_time_. This after pretty much zero success with all of the other kinds of laxatives - bulk, stimulant, whatever. The suggestion from Kathie Guardino initially was dear ol' MoM but that didn't work well for me.

From Gretchen (Mom to Franklin, 22 mo., IA)

We also experienced bad diaper rash with Franklin when we used Senokot alone, mainly because he was pooping 6 or more times/day and the poop was fairly liquid. Less Senokot didn't help. At Kathie G's suggestion, we started giving him more fiber. We first tried Juice Plus, but found that Metamucil worked much better. We now mix the orange flavored Metamucil (fine ground) with a little Gatorade powder and 9 oz. of water and give it to him as a morning bottle (we cut a little bigger hole in the nipple so that it can flow through a bit better since the Metamucil is thicker than milk or juice). We also generally give him a small cup of it in the afternoon. This has cut the number of poops per day down to 2 or 3. Also, it changes the consistency of the poop such that it sticks together and is much less caustic.

Update 10’99, Franklin just turned 3yrs.

Franklin takes 10 cc's (2 teaspoons) of Senokot every night. We give him 1 * tablespoons of Metamucil (smooth texture, orange flavor) in the mornings with 8 oz. of Gatorade. He sometimes finishes all of it, but more often only drinks *'s of it and occasionally only half. He weighs just over 30 lbs. He poops in the morning, about half of the time waking up with a dirty diaper and about half of the time within an hour of waking up. He often times has 2 poops in the morning within a 30 minute period of time. He occasionally has another poop in the afternoon. We are not strict about his diet but TRY to avoid white rice (his absolute favorite) and bananas as much as possible. He also does not drink juice because we have found that it causes more frequent, small poops.

From Karen (Mom to Stephen, 3, HIA)

            We have found that Stephen *appears* to have less accidents/smears when we give the psyllium first thing in the morning - i.e. before breakfast. We *believe* that the psyllium acts as a plug - i.e. creates a blockage so that all of the stool behind it can't slip out as accidents. What we think is happening is that the senna pushes out yesterday's meals (usually just before and/or after breakfast) and then the psyllium "plug" holds in any smears that might threaten to escape until the next senna kicks in the next morning. (We give the senna at night.) Actually, some of today's meals may come out but if it does, it is so bulked up from the psyllium that it is much less likely to escape unnoticed - i.e. create an accident.

            Another thing we noticed is that if we didn't get Stephen to drink a lot at the same time he took the psyllium - he had lots of accidents. I guess w/out the liquid the psyllium can't bulk up and form it's plug. We give Stephen his psyllium first and then cheerios and milk w/ an extra few ounces of milk to drink w/ the cereal. We top the whole thing off w/ about 5oz. of gatorade. The days I didn't push the "drinking" milk and the gatorade are the days we had lots of accidents.

Cyndy, (Mom to Sam, 31/2 years, HIA)

As Sam grows I have had to increase his Senokot. Recently nothing seemed to work reliably but when I upped the Senokot from 7mls to 9 mls it did the trick. He is actually using the potty almost every day and is able to hold it until he gets there!

Calmol 4

Mary (mom to Katherine)

I wanted to share something I learned from our new GI doctor. Instead of using babylax to stimulate the rectum, we have found that using Calmol 4 can be equally effective. It's meant to be used for hemorrhoids, but in Katherine's case, it lubricates and slightly opens the rectum (it's a suppository). We've found that it's enough to allow her pass the stool as effectively as the babylax, but it's not as irritating as the glycerin. Calmol 4 is 80% cocoa butter, 10% zinc oxide, and 10% some other things (including Glyceryl Stearate, but supposedly this is not irritating like Glycerin). I can't say for sure, but it seems like it allows Katherine to push on her own since there's no stimulant to make the muscles contract.

Just BabyLax

From Roseann (Mom to Karl, 2, IA)

Posted 12/2/97

For those of you who are new, Carl gets a solid glycerin suppository every morning, which elicits a large poop (which he still insists on depositing in his diaper). He stays clean at day care, although he wants to wear a diaper until the first time he goes potty. Sometimes, he has a poop after dinner. When he does, a little bit usually goes into his underwear, but the bulk goes in the toilet. Occasionally, he poops in the toilet at other times during the day.

From Gretchen (Mom to Franklin, 15mos, HIA)

We tried diet, but had no luck -- either too many prunes and then diarrhea or still a bit constipated and so lots of small poops. Kathie told us to use the Sennakot. She originally was going to start us on Milk of Magnesia, but then changed her mind. We had been giving Franklin 1-1.5 tsp. of Senokot every night and he seemed to be getting all of the poop out, but in 4-6 poops/day, sometimes more. In addition, he didn't seem to really know when he was pooping. He doesn't stop what he is doing or work to push the poop out. In fact, sometimes, especially when he is in the bathtub, it seems to almost fall out. He is now getting pretty massive amounts of fiber in the mornings (a full bottle of Juice Plus Fiber and/or Metamucil in Gatorade). We also give him about a teaspoon of Senokot at night. The fiber has had the effect of binding and thickening his poop so that it comes out in a couple of big poops.

 

BabyLax/Suppositories and Laxatives

From Anne (Michael, HIA, bladderneck fistula 2.5yrs)

I started a daily regimen of BabyLax with Michael almost a year ago and I remember that it took several months before it stabilized to where most days he was completely emptying with the BabyLax. In the beginning he would usually go one or two additional times a day and I just stuck with it. I kept a log early on and saw as the months went on that it became more and more stable. Now he usually stays clean all day except when he is too constipated and I can't empty him out completely with the BabyLax. I am usually aware that it is such a day after I give him the BabyLax, but for now, since he is only 2, I am not doing much about it except adjusting his diet to make sure the next day is better. My plan is that as Michael gets older I will work towards having him sit on the toilet at the regular time each day and attempt to have him initiate the movement on his own. If he is unsuccessful, I will give him BabyLax. I imagine that for kids with a good prognosis they will be able to retrain their bodies to initiate the movement on their own when they understand the process a little better. I think that the body and colon can be trained and in the case of BabyLax it is being trained to go on a regular schedule. This is not to say that the muscles are no longer able to initiate the process, but that the colon has been trained to stay quite until stimulated to go. Since we are doing it on a regular basis, and are ensuring that the rectum never gets completely full, I think the normal massive expulsion does not occur. At the same time, most of our kids are dealing with constipation so there is a force working against evacuation.

Update from a later note:

I am now starting to give him Lactulose, in addition to the BabyLax, in order to help improve the consistency of his stool. It is helping, but I am still experimenting with the dosage and frequency. I think it is better to only give it to him once a day, since it seems to stimulate a movement regardless of how full he is.

Update from a later note:

Since starting the Lactulose he has a rare day when he stays clean all day. It appears to draw water into the stool, but does not bulk, so it softens and increases transit time. For Michael and his current bowel management program this is not really what we want. I think I will try fiber (ex. Metamucil) next to see if bulking helps.

From Suzin (Mom to Melanie, cloaca)

When Melanie started getting less of a response we doubled the babylax to two. We give her 2 in the morning, this seems to do the trick. She takes about 1/2 teaspoon of senokot at night, also. Melanie is about 50 lbs soaking wet and is 8.

From Teresa (Registered Dietician, mom to Caroline, DS and LIA)

When we decided to switch Caroline from Sennakot to Lactulose, we used both for a few week or months during the transition period. I gradually decreased the Sennakot while increasing the Lactulose. It was trial and error! After all was said and done, I believe the actual dosage of Lactulose needed was a little higher than the Sennakot dose in order to get the same softness of her stools. This is because senna is a harsher stimulating laxative, and lactulose is more of a stool softener. Caroline takes 1 Tbs.. twice a day (she weighs about 45 lbs) to keep her stools soft (1 Tbs. morning and one in the afternoon). She needs BabyLax every evening to "initiate" her BM (she may just be dependent on this stimulus from having it for so long now); about 1/4-1/3 of an adult bulb of liquid glycerin suppository. I have been wiggling the tip around a bit before I pull it out as a manual stimulation. Yes, there is discomfort. I tried babylax on myself, and the stuff burns. This stimulates the anal area to want to pass out the stool which has collected in the LOWER colon (emphasis mine). I don't remember if she complained much then. Like I said now she prefers the liquid glycerin over the Fleets enema, which tells me she gets more discomfort from the Fleets.

From Keith (Dad to Ridley, medium IA, 5.5 yrs old)

Per Dr Pena, we are trying to switch to MOM from babylax after 2+ years of using BabyLax approximately twice per week The switch was recommended because one night after giving babylax for the fourth night in a row Ridley didn’t poop at all. Anyone have problems with an increase in # of BMs per day and smaller sized feces, less predictable and occasional bms during sleep with MOM as opposed to BabyLax? We still have to resort to BabyLax some nights when we feel she has not "emptied" completely. Update as of 2’98, Ridley gets MoM daily at the dosage for her age and babylax every other day. She drinks 8oz. of prune juice daily and avoids all dairy products (we use rice dream and soy or rice milk only and tofu cheese). We just chose daily calcium pills instead of dairy to give her the best possible chance to go on her own with diet. We have not been to dieticians just discussed this with the pediatrician and alluded to it with Pena.

From Cynthia (mom to Drew, VATER, IA, 6 yrs)

Posted 11/22/97

We use bisacodyl suppositories nightly and have for the past year. Drew was still in pull-ups and was headed for kindergarten which was causing major worries. His doctor finally recommended suppositories after I insisted we needed more help. It has worked very well. He also takes oral medication. He has been on Agoral (active ingredient phenolphthalein) since pull-though. Once we went to the suppositories I was able to significantly decrease the amount of Agoral he took. But, of course, now we know that Agoral is bad and they are taking it off of the shelves. We are trying to switch to Kondremul which is a mineral oil emulsion.

Posted 9’98

Drew takes Kondremul in the evening before bed. He takes between 3 1/2 and 4 tsp. each night. He weighs about 40 lbs. and is 7 years old. He just drinks it out of a measuring cup and chases it down with water. He doesn't like it but he doesn't mind it at all. We also do an evening suppository. We buy a generic form of Ducolax suppositories in a box of 50. It takes 10-15 minutes for the suppository to kick in and another 10-15 of sitting on the toilet. We could not just do the laxative without the suppository or the suppository without the laxative.

Enemas

From Karen B. (Head of PTN, mom to Sammy)

Sammy has very poor motility. She was never impacted but an x-ray showed she was full of poop.

It did take about 18 months after closure for Sammy to get to the totally constipated state, where she wouldn't poop at all without an intervention. Before that, she would go all day, small, nicely formed poops and nothing while she slept. We never tried the prunes with her, but we did try senokot. Kathie also told us to just increase it until it provoked one large bowel movement a day. We never got to that point. The more we increased it, the worse cramps she had, and the longer she pooped the next day. Sammy's poops were definitely very caustic and stinky when we were using the Senokot. Her diaper rash got so bad that we gave up and moved on to enemas.

Toilet Training

From Pena’s Office

Before Starting Training

From Birth to Three: Pre-Bowel Management Strategies by Dr. Pena, PTN Newsletter Vol. 6, #4

It would be much easier for a child to become toilet trained if he has one big bowel movement every day at a predictable time. The parents can achieve this by trying to be very regular in the type of food and meals schedule. It is better to giv3e 3 meals than 5 snacks. Our colon moves every time we eat due to the gastrocolic reflex. Thus, it is ideal to condition the patient’s colon to move at a single time everyday, if possible. This is best achieved by giving regular meals at the same time everyday.

Determining if a Child is Trainable/Starting Training

From Bowel Management for Children with Anorectal Malformations by Kathie Guardino, PTN Newsletter Vol. 5, #2

Three factors need to be present for a child to be fecally continent:

The child needs to have rectal sensation - the ability to feel stool passing through the rectum

The child needs to have good motility of the colon. Normally the rectosigmoid remains quiet for 24-48 hours then a massive peristaltic wave allows the complete emptying of it to remain silent again

The child needs to possess good voluntary muscles, or sphincter mechanism. These muscles allow for good retention and control of stool.

The bowel training program is best implemented when the child is around 2 years old. Parents have the child sit on the potty after every meal to take advantage of the gastrocolic reflex (the peristaltic wave in the colon that is induced by the entrance of food into the stomach). Sitting on the potty should be done as a game not as a punishment.

From Winter ‘92 PTN Newsletter Article - “From Our Medical Advisor”

Toilet training must be attempted when children are between 2 and 2.5 years. By the time the child reaches this age, the parents have a very good idea of what kind of bowel movement and voiding pattern the child has. A child who has 1-3 bowel movements per day with no soiling on the underwear in between bowel movements, and evidence of “feeling” (Means the patient pushes or makes faces when he has a bowel movement), usually means that the child is trainable. One must always expect urinary control to be obtained before bowel control. Many children become continent by age 3. However, one should expect certain delays in gaining bowel control in most children with anorectal malformations. This delay can range from 1 year to several years.

From Surgery of Infants and Children, Edited by Oldham, et. al,, Chapter 83 Rectum and Anus by Charles Paidas and Alberto Pena

In children with ARMs, we have never seen the actual internal sphincter... there is no clear evidence for a definable internal sphincter in patients with ARMs. However, there is no evidence that absolutely links the presence or absence of the internal sphincter to normal bowel control.

In adults, anal endosonography provides definition of the voluntary striated external sphincter and involuntary smooth muscle internal sphincter. It is also possible to determine the status of the pudendal nerve by using electroneurography. These techniques may have future benefit for postoperative evaluation of incontinence following repair of ARMs.

Children born with ARMs have a spectrum of sensation and proprioception. Agenesis of these nerve endings, such as occurs in high imperforate anus, may mean that for whatever spectrum of voluntary striated musculature is present, there may also be a defect in sensation and proprioception. In children with ARMs, a feeling of fullness (proprioception) may be accompanied by a spectrum of exquisite or rudimentary sensation to no sensation at all. In these children, sensation is a consequence of distention of the neoanus. They cannot rely on an intact voluntary striated muscle mechanism because by definition there is a paucity of this muscle mass and its innervation. Therefore, many of these children cannot hold stool or have a normal bowel movement when liquids are present in their neoanus. Solid feces will distend the rectum but liquid stools do not; thus, liquid stools must be avoided at all costs.

From Toilet Training by Y. Castile, K. Guardino and A Pena, PTN Newsletter Vol. 8, #1

Bets time of day - Becoming toilet is easiest if the child has only one big bowel movement a day at a predictable time. It is really important to be very regular in the type of food and above all in the meal schedule. The bowel is stimulated each time we eat or drink due to the gastrocolic reflex. That means the presence of food entering the stomach makes the body send a signal to start peristalsis. So, the best moment to bring the child to the bathroom is just after each consistent meal to take advantage of this natural reflex.

Improving the Bowel’s Movement - We may also increase the magnitude of the peristalsis (the bowel’s movement) by several exercises. The most specific and efficacious one is diaphragmatic respirations. It requires the child to alternate between contracting the muscles of the diaphragm wall and the muscles of the abdominal wall. In other words, the patient should breath out through the mouth, pushing the stomach inward towards the back and breath in through the nose swelling the stomach out. These alternating movements massage the internal organs and provide a strong stimulation to the bowel to “wake it up”. After learning to achieve this exercise properly, it can be performed on the toilet.

Best Position - First, the child MUST have his feet on a strong stable support, placing a small footstool at the base of the toilet will help. Second, the knees MUST be at least the same level as the hips. Better, they should be a little higher and separated from each other. Third, the elbows should be placed on the knees, and for better results, with hands located on the lowest part of the stomach.

Thrusting Technique - Defecation normally happens once or twice a day. It should be fast and with a minimum of effort. Defecating is achieved by the contraction of the terminal (distal) part of the bowel after the relaxation of the sphincter muscle. Usually, when children meet some problem in relieving themselves or are constipated, they begin pushing energetically and stop breathing. The fade turns red. This is the worst technique you can use. Why? Because thrusting this way causes the muscles of the pelvic floor to contract when they should be relaxed. This phenomenon is called dyssynergia. After each meal;

            First, the child has to be comfortable prior to relaxing his sphincter. He has to sit in the right position. The parent’s goal is to reduce the child’s stress and to make the training time relaxing. It must NEVER be followed by any kind of punishment even if it takes time to be successful. Positively reinforce even a child’s unsuccessful attempts.

            Second, if the procedure isn’t productive after a few minutes, the child must stimulate the bowel with the diaphragmatic respiratory technique and after some repetitions, press backwards and downwards on his lower belly, just above the pubic bone, with both hands.

            Finally, he may thrust slowly with his abdominal muscles, breathing out and leaning forward for two or three repetitions.

            If the child succeeds, you must encourage him and congratulate him.

            If after no more than 3 to 5 minutes, it doesn’t work, that’s it. Try again after child’s next meal.

Miscellaneous

From The Philosophy Behind The Bowel Management Program at Schneider Children’s Hospital by Dr. Pena, PTN Newsletter Vol. 5, #2

I believe that there is a better chance to toilet train a child who is used to being absolutely clean and odorless for all of his life, than a child who soils all the time. Among the problems we have seen is that patients become accustomed to the smell of stool, and do not perceive that their odor upsets anyone around them.

There is a higher chance of a child becoming toilet trained as time goes by. Some patients have a borderline type of bowel control. In other words, they have a minimal sensation to perceive when the stool is moving in their rectum. If they are very young and they are busy playing, they do not pay attention to that minimal sensation. As the child grows, he becomes more interested in his own bowel function and he may concentrate on perceiving that weak sensation which could be the difference between bowel control and no bowel control.

A patient with a rectoprostatic-urethral fistula has a 60% chance of developing voluntary bowel movements by the age of three. If the child is about to begin school and is not trained, we suggest that parents use bowel management for the course of the school year. During their summer vacations, however, we stop bowel management and try to train the child. Three years of age was chosen based upon our experience; of course, there are patients who are not toilet trained by this age and become trained 1-2 years later. If he is not trained by the age of three, giving him bowel management for one year should not decrease his chances of being toilet trained. If we are asked, “Are we sure that the bowel management will not interfere with the potential for the patient to become toilet trained?”, the answer is that we can not be sure of anything because we do not have scientific evidence of it.

 

Program for Toilet Training HD Kids Used in the Netherlands

From Muriel

It's a project that involves a multi-disciplinary team: pediatric surgeon, psychologist, physiotherapist, dietician. The project aims mainly at hd children, but can also have a positive result on ia children. The physiotherapy concentrates on "letting go", as opposed to holding up. They found out that most children are constipated because of fear. After all, they've gone through a lot with their hiny, pooping may be a frightening experience for them. It's also possible that there's too much emphasis on the hd or ia, parents might forget that their child is more than hd or ia. The purpose is to relax "below the belt". To achieve that they play games with the child. Children are taught how to arch their back - it's easier to poop with an arched back. Symbolic games can help the child not to have fear of poop. They play with mud and clay to show that softer mud or clay is easier to handle than the hard stuff. Story's about poop are read so the child gets comfortable talking about it and accepting it as something normal. The child is taught to make a hard tummy and then let go again. Homework: every morning after breakfast making hard tummies on the potty and at night again after dinner. The emphasis is not on the pooping itself, but on the exercise. It's important that the child is not "pushed" to have stool. If it comes on the potty, then reward of course! I saw on the video they showed that many children can be very afraid of poop on their buttocks, that it just keeps hanging there. They can be completely cool about pooping in a diaper, but when it comes to the potty it becomes a frightening experience. A toilet can be very frightening as well. Most children are afraid to fall in or get flushed as well.

 

Potty Training Techniques from the Oops Book

Note: From PTN Newsletter Vol. 5, #3, The Oops! book costs $17.50 plus $9.00 postage. You can fax in your order with MC or VISA information to: 03-9345-5789, attention C.H.I.C. or send a bank draft to: The Child Health Information Centre, Royal Children’s Hospital, Flemington Road, Parkville 3052, Victoria, Australia

It is well known that all children manipulate their parents, but a child with a disability has a heightened ability to do this. To help to prevent this, parents need to set up routines for daily living which are regular, but flexible. The family must have time out any time it is needed to prevent frustration. It is quite unreasonable to expect long term routines to be carried on without regular breaks. Some days are just too busy to fit everything in. Since potty training may take months or even years, the parents must know that frequent and regular “time out” is not only acceptable, it is actively encouraged. Explain that mom or dad will be doing more of the things the child should be doing for himself, just to help the child for ‘x’ amount of time. The child must realize that this is a rest time for him and the parents. During this time, he can “sit” for a much shorter time.

Routine Pottying

Start a routine of regular “sitting” on the potty once a day when baby can balance, with support - approx. 6 months. Although this is very early, it will become an accepted part of his routine. Gradually increase from once a day. Sitting can be for as little as a minute.

Toilet Timing

Toilet timing is when the child is placed on the potty at the time he is most likely to pass urine or feces, without any motivation on his part. The most likely times for this to happen are within an hour after a meal (usually 1/2 to 1 hr) or soon after waking up. Toilet timing has occurred when the bowel and bladder work at regular times each day.

When to Start Bowel Training

Preferably at the end of winter to reduce laundry

When the child indicates by straining (or a certain expression on his face, squatting down, running away to hide, etc.) he knows he is going to have a bowel movement

When there is a regular time at which the bowel works

When one parent can spend 2-3 min. of quality time w/ the child at each sitting

How to Start Bowel Training

For a child who has a regular evacuation time but no feeling, teach him to recognize the time and go to the toilet at the time the motions is expected.

For a child who has feeling, have him sit on the toilet only whey he feels the need to pass a stool. Don’t keep asking him if he wants to go to the toilet. Encourage him to take himself to the toilet, then seek help when he needs it.

Leave his diaper off because the pressure and bulk tend to confuse the messages from the rectum and he will not be motivated to go on the toilet since the diaper has always been where he passed stool before.

There is no way to know for sure if the child is feeling the stool none of the time, some of the time, or all of the time. He may feel stool and choose to ignore it. Maturity and a desire to be clean is the only way to have a child answer all of the messages he does receive. Ways to encourage a child to acknowledge messages include:

            Foster a desire to be clean

            Encourage prompt action to empty the bowel, rather than wait and have an accident

            Encourage friendships w/ non-handicapped peers

Note: To test the amount of feeling a child has in his rectum, suppositories can be used. Most children will complain at the sensation when the rectum is stimulated in this way. How quickly he makes a comment, and how long he complains of the sensation, will give a fairly good indication of the amount of feeling.

Note 2: Sometimes a child has enough feeling to know that if he pushes hard the stool will hurt him as it goes through the anus, so actually ‘holds on’ rather than ‘pushing out’.

A full bowel will prevent toilet training from occurring. Any messages from a full rectum are lost and the pressure on the child’s bladder will give mixed messages regarding the need to go to the toilet. Prevent constipation.

Tips for Sitting Time

One parent needs to be able to spend 2-3 minutes of “quality time” with the child at each sitting time to help and teach the child.

Just prior to each sitting the child should be asked if he knows if he is wet or soiled.

Place a stool under the child’s feet.

A child who has lack of sensation may have increased fears of falling into, or off, the toilet. Placing a chair beside the toilet for him to lean on may help.

The child must be taught to bear down. To learn ‘bearing down’, he should place one of his hands on his lower abdomen to feel how hard it becomes when he pushes, blows, coughs, or laughs. If he then achieves a bowel motion, he knows he is doing it correctly. The child should do at least 6 good pushes at every sitting.

If the stool is trapped a little higher in the rectum, have the child “exercise” by leaning forwards onto his thighs, then sit up straight again. He should do this 5 or 6 times, then try bearing down again.

If the baby has a lax anus (one which may not close efficiently, or may be constantly open), care must be taken in the way he is placed on the potty. If the buttocks are squashed too close together or stretched too far apart on the potty, the anus may be partially, or fully closed off, resulting in the feces being unable to be evacuated. The normal function of the anus at the time the stool is to be passed, is to lift up, over the descending stool. A lax anus is unable to do this. A little pressure applied by a finger each side of the anus may assist the removal of the stool if the child does not have enough power in his muscles to do it alone.

Note: A lax anus or prolapse may cause a child to always be wet or soiled. In such a case, even if the child has skin sensation in the genital area, he will gradually become unaware of being wet or soiled (just as an adult becomes unaware of a wedding ring).

Once daily, using a washcloth, skin sensation (where the nerve supply is reasonably intact) can be enhanced by using a washcloth that is wet or dry, rough or smooth, hot or cold, and asking the child to identify which is being used. It may take 6 months for the child to become aware of wetness in this area, but it is worth it.

For ease of access to the genital area, cut out the center of the front of the child’s toilet seat insert, then smooth the edges with sandpaper.

Reward the child with hugs, smiles, and claps for TRYING not necessarily for PRODUCING.

Some abdominal pain prior to a bowel motion is quite normal for all of us. A child with severe nerve damage will be unable to feel the poop when it reaches the rectum. When the abdominal pain occurs, he may be able to use this as a marker for the length of time before he must be sitting on the toilet.

Stimulating the Bowel Into Action

Sometimes the bladder and bowel can be stimulated into action by wiping the area with a piece of wet or dry paper. As soon as the child sits on the toilet, wipe the anus firmly. This can be repeated 2 or 3 times during each sitting time. Tell the child as you wipe him that this is where the pee or poop comes from.

The temperature changes felt by the child when he gets into the bath or swimming pool, can stimulate the bladder and bowel into action. If the child was unable to empty the bladder and bowel prior to these events, allow time for removing him to the toilet soon after getting in.

Added activity such as swimming and other sports put more pressure on the muscles of the lower pelvis which tends to push the stool or urine through weak or poorly controlled sphincters. Some children prefer to have their buttocks strapped at these times. Note: In general, a physically active child promotes an active bowel.

Clockwise massage of the abdomen may stimulate the bowel. Some oil or hand lotion will allow for firm, but not too deep, massage for a minute or so before the child is placed on the toilet.

Insert a gloved (vinyl!) or cling wrap finger, lubricated with KY Jelly into the anus. Remove any hard lumps of poop then turn the finger in a circle around the wall of the bowel a couple of times. This action stimulates the rectum and the older child can learn to do it himself if it is effective. An old fashioned soap pencil can be used too. To make a soap pencil, cut a piece of unperfumed soap about 8 cm long and the thickness of a thick pencil. Taper one end to a blunt point. To use, wet the soap pencil under the tap. Insert the blunt end into the rectum. Gently circle it around the bowel wall a couple of times, then remove it. Have the child bear down. Wash the soap pencil off under the tap and wrap it in plastic for next time.

Things Which Affect Bowel Patterns

Stress, anxiety, or excitement

Illness

Penicillin and other anti-biotics often cause diarrhea.

Dietary Changes

Using Suppositories/Enemas

If the child is due to start pre-school or school and there is no regularity in the bowel timing, the parents may wish to try using a suppository or a micro enema at a regular time each day. These are used until a routine has been established. There can be some side benefits to this too:

1) The bowel should be fully emptied so the child can learn the difference between a full and empty bowel. It may also mean a longer clean period.

2) For a short time after the suppository/enema has been inserted, there will be an increase in the stimulation which the child may feel. He can then learn to associate this feeling with the need to pass stool.

3) The child may be able to tell when the bowel is full again. Even when the nerves are intact, if the bowel is constantly full, the child becomes unaware of the area.

Enlarging Bladder Capacity

A small child needs to learn the feel of a full bladder. The longer he holds on, the better his bladder capacity will be. Bladder capacity is difficult to increase if:

1) He is sent to the toilet too frequently - that is, every 1 to 1.5 hours, without waiting for the feeling of need

2) He is never encouraged to hold on a little longer

3) Fluids are not encouraged during the day

4) The child has a weak bladder sphincter

A lower rectum distended with stool will reduce the capacity of the bladder.

Setting An Example

It is quite common for adults to say aloud that they “need to go to the toilet’ but, because they are busy, do not go for some time. This can cause aggression in a child who i.e. usually expected to go to the toilet the moment the parent tells him to.

 

PTL Members’ Experiences/Advice

Potty Training Specialists

From Mary

My son was sent to a specialist (gastroenterologist I think) at Riley in Indianapolis prior to having surgery 2 years ago. It was a last ditch chance to try for continence before proceeding to surgery. They used a balloon in the rectum to try to teach him how to contract correctly to hold or pass a BM depending on the situation. In our case it was a complete failure. At the time we didn't know that there was too much nerve damage for him to get control. I have heard from the doctors that it does work successfully for some children, there needs to be some sensation. In my opinion it's worth a try.

Psychological/Social Issues Re: Training Kids w/ IA

From Dan (adult)

It seems to me (mind you I'm not a shrink or a parent) that part of the process of toilet-training involves peer pressure - i.e. "big boys/girls use the potty, not a diaper, and you should, too". Part of the problem with this approach in IA is that

A) the child may think "most boys/girls weren't born this way, and I was, so why should I conform by accepting potty training?"

            and

B) the parents might bring less (emotional/social) pressure to bear on the child because of their condition and the uncertainty that they can achieve bowel/urinary control in the first place.

From Susan (mom to Joey, 8, dysmotility, vh, migraines.net)

I don't think kids have accidents out of laziness. They have accidents cuz something is wrong. My son is more likely to have an accident on the weekend or after school too. My theory is that when he is active he starts having more colon contractions. So after school when he is playing he is more active and has more contractions. Also he has decreased awareness, so when he is playing he is less attentive than if he was sitting doing seat work. But he has a problem and is not dealing with what most people have with regards to normal bowel function. I remember reading in one of the PT newsletter an article by Dr. Pena and he said something like, "Children do not manipulate by soiling in their pants." It felt so good to read that. I think probably, hopefully, that adolescence will bring more awareness because of maturity. They will hopefully learn more about cause and effect and consequences etc. But they will still have the same lousy bowel function.

From Gerry

I have always, even as a kid, had a phobia about going to the loo near people and that also means public loos, I mean for BM's. Don't know quite why I feel that I need the privacy, maybe a reaction against all that time that I spent in hospital as a kid and the lack of privacy in that area then or maybe sometimes the straining that I had to do at times and the thought that other people could hear me.

From James

PLEASE don't overlook the fact that at some point your kids MAY want ABSOLUTE privacy and WORSE, may not know how to ask for it!!! Please OFFER the option!  I am disabled, I have Cerebral Palsy and it effects my coordination, ALL of it. My BM's at age 3 took a LOT of straining and grunting before it came out. I was WELL AWARE of this and chose to hide in the closet when ever this effort was necessary. My Mother had other ideas! In the midst of it she would find me, drag me out, place me on a seat over the toilet, and sit watching!!! I can't tell you how many enemas I was given during this time because I simply would NOT strain or grunt in front of my MOTHER. Nor would I tell her what the problem was, but I remember thinking "If you'd just go away I could get this out of me". Finally my Father got involved. My father who had the insight of a saint, told me, "we'll leave you alone, we'll go down stairs and you call us when your done". Voila: I was potty trained!

From: Kristen

Honestly I think you have to get upset about the accidents. I mean you don't want to give him a complex, obviously. However, if you don't get upset he doesn't and you're right. He'll think it's okay .. no big deal ..I found that I tried too hard to make thing 'okay' when Kevin would have an accident. And this was never clearer to me then when he looked at me and repeated my own words back to me, "No big deal .. right mommy .. no big deal" Well the fact of the matter is .. it is a big deal. And he's got to learn that accidents are NOT good. So we changed tactics. For example he got punished for having an accident and not telling us til we found the evidence either in his undies, or on the floor. But if told us that he was having an accident, (I think Kevin's chances of bowel control are much less then Stephens - he usually can't tell he's having poops until it's too late) then he got a reward. So It's not so much the accident that's being punished, but the trying to hide it .. or ignore it. Now that we've been doing this a while, it's become greyer, because now he's recognizing more signs earlier. So he seems to think he's okay if he has and accident then tells right away, "Oh mommy I had an accident" rather then while he's having it. So we've had to get a little stricter on that.

Wearing Pull-ups Removes Incentive for Urinary Continence

From Angela (mom to Marvin, 5 , IA&HD)

One thing I do believe is that it is very difficult to train a child to pee in the toilet if he/she is still wearing pull-ups for stool incontinence. At least in my son's case, the moment he was not in pull-ups all day (about 6 weeks ago) he started peeing in the toilet. You see, my little boy realized that if he peed on himself with a pull-up- no one would know about it. He would not be embarrassed and his pants would not get wet. But with underpants on, the pee would "run down my leg and everybody will see it and my pants will be all wet" as Marvin says. So he probably would have trained with the pee much earlier had he not had the security of the pull-up. Little boys generally (mine especially) don't want to stop playing, go inside, miss something on the play yard to go to the bathroom. So, take one issue at a time. Work with his bowel problems and the pee issue may just work itself out like ours did.

From Laura (Mom to Brandon)

As far as your son refusing to wear underwear, well, my experience in this little area was (in their eyes) that it's ok. for them to pee in their diapers/pullups but not ok to pee in their underwear. So, they opt for the lazy way. Insist on putting him in underwear. I'll bet after he has to wear a few pairs of wet/dirty underwear, he will think twice about messing them up. I know it's a hassle, but it has to be done. Brandon will stay dry as long as he is in regular underwear, but if he happens to be wearing a pullup, he will pee in them every time. His reasoning is he knows he's not supposed to pee in his underwear, but it's okay to pee in a pullup. I've tried to explain to him that he should only be peeing in the toilet now, but he is just hard-headed. He knows every time he is peeing.

Causes of Urine Dribbling

From Marg (Mom to Chris, 14yrs)

My son has dribbled all his life & until the age of 8 I thought it was normal. When I asked the surgeon he told me that they'd do tests for tethered cord. Instead of tethered cord what they found thru an x-ray was a urethral pouch which collects urine & supposedly it dribbles from there. I was told this is something fairly common with I.A. & that it is not something they operate for & remove because of potential complications.

Reasons to “Catch the Moment” and Not Hold it In

From Susan (HIA, adult)

Constipation existed for me from birth. I was born with HIA and cope with varying degrees of leakage/incontinence. When I am successful at "holding it in", it is often impossible to get things moving again until there is another big peristalsis wave - which is usually hours or days away. So I've learned that it's best if I can catch the moment. If I'm unable to get to a bathroom or haven't time to sit there when I'm feeling the abdominal cramping, I get constipated. Once the cramps pass, nothing happens. In the days following, the laxative induced cramping is harder to detect, and gets confused with increasing flatulence. For me, the most likely time to have the peristalsis movements seems to be after eating a large meal, followed by a cup of something hot. I am convinced that the process of "holding it in" is completely different from the letting go and releasing part, and it's much more complicated than just "relaxing". I believe that chronic constipation makes the body confused as to what signals to pay attention to. When I did exercises to try to strengthen muscles and improve continence, I did develop better control with "holding it in", but I also had more trouble releasing!

Silent Alarm Pediatric Watch

There is a pediatric watch that allows you to set up to 6 alarms per day. The alarm can be silent (vibration) or a tone. It looks like a normal sports watch with date, time, etc. It is called the e-pill MeDose Pediatric Watch. It is expensive - $100. But, it can be used to remind your little one to go potty in public situations w/out any embarrassment. http://www.epill.com/boys.html

Alarm System for Bed Wetting

From Cyndy, Mom to Sam, 3 years, HIA and Nathaniel, 7 years

This method may not be appropriate for children born with bladder malformations but my seven year old son (who was not the one born with anorectal malformations) was wearing pull ups at night until he was six and 8 months. He is now dry at night thanks to the DryTime for bedwetting program. Nothing else worked and this sensor had him dry within 4 weeks. It costs about 60 dollars which was worth it if you compare the cost of pullups! It taught bedwetters to gain control of their bladders. Within seconds of bladder release the DryTime sensor sounds an alarm which conditions the child to wake up when wetting occurs. It is worn inside the underwear with the alarm pack clipped to the waistband. I was skeptical but WOW! No more pullups, he can easily stay overnight without worries at grandparents and while camping. And an odor-free bedroom! I know they have a website so just run a search.

The company is Health Sense International, Inc. and the 800 number is

422-3858. It comes with clear directions and charts to help your child.

My husband slept in his room on a cot for a couple of weeks. Our son

hasn't had an accident since Jan. 13th and he started the program on

December 27th. He is so pleased.Sorry to ramble but this was more successful than I had hoped

Importance of Toilet Timing for Children Who Don’t Know When They Have to Go

Answer from Sandra (mom to Ryan)

Q1. I will ask him to try sitting on the potty and he has BM then, but never by his own request to sit on the potty. He doesn’t seem to know that he needs to go unless he sits on the potty and tries a push. Then he seems to feel it. Of course he is also just five and has not realized that he is going to want to poop on the potty.....

A1. Ryan, who is almost 6 years old, will swear to you that he doesn't have to go but once you get him in the bathroom on the potty he will. Many times he will call me 1 minute later and sure enough he has filled the toilet. Other times he will spend an hour in there playing and pooping. The point is- he won't go unless told-but once there he knows when he is done or when he should sit a while longer. If your child can "poop on command" then I think the battle is won even though he don’t feel like he has to go. Set a specific time every day when your child has to go in and sit on the potty. The routine has worked wonders for us. When Ryan has gas is often a good time to tell him to go poop.

False Alarms

Sometimes my son tells me he has poop when it's just his prolapse

Getting Kids to Sit on the Potty

Why don't you have him sit on the potty at other times of the day with his clothes on until he feels better about it? Then you can have him sit with no pants, only a diaper, and then eventually lose the diaper as well.

From Anne (Michael, HIA, bladderneck fistula 2.5yrs)

For the past month Michael has been going poop each morning on his potty! I give him the BabyLax and then he gets up and goes over to his potty and gets to watch TV while he goes. Since we limit his TV at other times he is now anxious to go poop just to get to watch.

Sitting backwards on the toilet

From Mary (Mom to Kayla, 3 yrs, low ia)

My pediatrician had an interesting recommendation for me for toilet training - he said to put Kayla on the toilet "backwards" - so her legs would like hug the back of the toilet bowl - this allows the muscles to be in a better position to push

Success Half of the Time During Summer Experiment w/ Laxatives

Answer from Suzin (adult, HIA, no sphincter)

Q1. From Kathleen, (Mom to Sean, 7 1/2 , HIA, KEH3282Aaol.com)

My son has nightly enemas to stay clean, but last summer I stopped those and gave him laxatives, to see if he could be continent. He had sensation, and could get to the toilet, about half of the time. What does this mean, half of the time? Why would he only be successful some of the time and not others?

A1. I haven't a clue what other people sense when they need to poop. (Evidently I have some neurological damage due to scarring.) I don't know your son's history, but I would imagine that the sensation he experiences when he has an enema would be different from the sensation he feels when he's taken laxatives. It seems likely that he would have gotten accustomed to how it feels to need to poop after an enema, but maybe it would take some time to learn to pay attention to new, different or maybe more subtle sensations. And if the sensations are easy to ignore, I would think a 6 or 7 year old might be so busy being a kid that he waits too long to run for the bathroom. I'm impressed that your son got to the bathroom half the time -- I do think it's a good sign.

Bribery

From Donna

Mark has done GREAT for a LONG time with emptying in the potty every morning ~ he takes Senokot at night. But when he WASN'T doing it in the potty, he was just being a lazy bones because his bed was too cozy and warm and "Why get up, Mommy?" So, I took him to Toys 'R Us... He picked out a toy that he REALLY wanted... (Fortunately, for relatively QUICK gratification, it only cost $10.00.) Then, I went to the post office and put a twenty dollar bill in the stamp vending machine to get ONE stamp. It gave me change back in either, 1. silver dollars ~ or ~ 2. the NEW gold dollars... Every night, I would show Mark his toy. (During the day, it resided, in the box, on his bathroom counter...) I instructed him that once he EARNED 10 coins, he could redeem his coins to me and BUY the toy! Every morning that he woke up with a clean Pull-Up, he won a coin... and HE got to choose, silver or gold! He got to keep up with them, count them OVER AND OVER, and then finally, when he had 10, he won the toy. It really helped!

Making a Round Belly

My parents taught me to pee by telling me to make a round belly. I still use this method as it also helps me to poopoo...

Wipes Rather than Toilet Paper

Using wipes, particularly Chubs brand, instead of toilet paper to wipe seems to be gentler on the children’s skin.

Putting Pottys everywhere to help train Loose Kids

I put potty chairs everywhere he was, in front of the TV, outside, in the bathroom, in his bedroom, in the family room, etc. He had a pot wherever he was.

Staying Dry at Night

From Cyndy (Mom to Sam, 3 years, HIA and Nathaniel, 7 years)

This method may not be appropriate for children born with bladder malformations but my seven year old son (who was not the one born with anorectal malformations) was wearing pull ups at night until he was six and 8 months. He is now dry at night thanks to the DryTime for bedwetting program. Nothing else worked and this sensor had him dry within 4 weeks. It costs about 60 dollars which was worth it if you compare the cost of pullups! It taught bedwetters to gain control of their bladders. Within seconds of bladder release the DryTime sensor sounds an alarm which conditions the child to wake up when wetting occurs. It is worn inside the underwear with the alarm pack clipped to the waistband. The company is Health Sense International, Inc. and the 800 number is 422-3858. My husband slept in his room on a cot for a couple of weeks.

Recommended Resources

"Toilet Training In Less Than A Day" by Azrin & Foxx.

Everybody Poops by Shinto Cho - for getting kids comfortable w/ poop

 

Sources of More Info on Bowel Management

Dr. Pena, Kathie Guardino, etc. at Long Island Jewish Medical Center

From Fecal Incontinence in Children With Anorectal Malformations by Charles Paidas

(Johns Hopkins, Seminars in Pediatric Surgery, vol. 6, #4, Nov’97

Pena, et al reported a success rate of 93% for the constipation subgroup and 88% for the diarrhea subgroup. The constipation group took an average of 4.5 days (2-15 range) to achieve successful bowel management, whereas the diarrhea group required 3.5 days (1-15). Success was defined as complete cleanliness (no accidents or soiling) for 3 consecutive days.

The Children's Hospital of Philadelphia

Abstract is from website, http://www.chop.edu/clinical/cpace.htm

The PACE (Pediatric Anorectal Continence Evaluation) Program is a unique program developed to manage fecal incontinence and constipation in children born with anorectal malformations. This program utilizes a multidisciplinary team approach to evaluate bowel function and develop individualized bowel management programs. The program is coordinated by a pediatric nurse practitioner who specializes in pediatric surgery. Other team members include a pediatric surgeon, pediatric gastroenterologist, child psychologist and pediatric radiologist. A parent of a child with VACTERL Association, including high imperforate anus, serves as the team's parent advisor. The goal of each bowel management plan is to achieve the best possible stool continence. Treatment modalities include dietary management, medications, behavior modification, bowel retraining, biofeedback, enema programs and surgical intervention. In addition, both parent and child support groups are available to families who have children enrolled in the PACE Program or have the VATER/VACTERL Association.

From Karen B. (mom to Sammy, cloaca)

I think that the "theory" of having to start bowel management at the age of two has been misleading. You need to start bowel management when your child is showing signs of needing it. Whether it is from:

1. constant pooping, which is causing horrible diaper rash,

2. an unbearable number of diaper changes per day, which is causing a strain on everyone,

3. constipation, which is causing impactions and hurting the prognosis for future bowel control,

4. starting school where it would not be good for the child's self esteem to be pooping in a diaper,

5. etc.

There is no one answer for any of these children. "Normal" children are in diapers until 2 1/2 - 3 years, even longer in some instances. You just don't want to cause constant impactions, or have the skin on the butt break down so much. Be attuned to your child, don't worry about "cut-off dates", because in the case of imperforate anus, there are none!

Incontinence List

There is a special list for neurological incontinence. The list is neuro-incontinence@egroups.com. You can join it by going to the website www.egroups.com and subscribing there. Neurogenic Bowel Book The Paralzyzed Veterans of America has a book on neurogenic bowel. The book is $5.00 and is on back order. If you are a member of PVA it is free. The toll-free # is 888 860 7244.(distribution center) Paralyzed Veterans of American 801 Eighteenth Street, NW Washington, DC 20006-3517 800 424-8200/ 800 795-3427 www.pva.org

Web Sites

Merck Manual

http://www.merck.com/!!u60NT2DFnu60NT2DFn/pubs/mmanual/html/mhoidcfd.htm

http://anatomy.adam.com/mhc/top/001858.htm

http://ww1.onhealth.com/ch1/resource/pharmacy/drug/item%2C26882.asp

http://www.4charmu.com

Alternative Treatments

Biofeedback

From PTN Moms

From Bonnie  (Mom to Amy)

            Biofeedback is essentially an exercise program for the pelvic floor muscles - the muscles involved in pushing for a bowel movement. It is the pelvic floor muscle that actually senses the need to have a bowel movement. All during the day the feces drip down into the reservoir at the end of the colon at the rectum. When it is full it will push against the pelvic floor muscle and you feel the need to go. That muscle then contracts to push the feces out..For biofeedback to be effective three things have to be in place - the child must have adequate nerve sensation, adequate muscles, and motivation. Amy has the first two and we are working on the third.

            I met with George Rodriguez at Schneider's while we were there to see Dr. Pena. The biofeedback program involves the insertion of a small probe into the rectum which is wired with electrodes which can send signals to a computer or a hand held home unit. The child is taught initially to distinguish the pelvic floor muscles from the other muscles in the abdomen and to contract and hold those muscles. They can monitor their progress on the computer screen. Once the therapist is certain that the child is working the appropriate set of muscles then you can do the exercises at home. It requires 20 minutes twice a day of contracting and relaxing the muscles. The home unit has sets of lights to show the strength of the contractions and has a timer for a 10 second contract and 10 second relax. Once a month you must return to the therapist for another session using the computer (which allows more complete measurement of the progress). This program could last as long as 6 to 8 months - until you reach a plateau. Then Mr. Rodriguez said that we would set up a meeting with Dr. Pena and evaluate Amy's diet and medication at that time and make plans for a two week trial period to go without enemas to see if she could have a BM on her own.

            As I understand it, the pelvic floor muscle circles the colon and is the mechanism by which the body is alerted to a full colon - and the need to have a BM. However, children and adults who have not used this muscle may need to have therapy to help them distinguish the pelvic floor muscle from the other muscles in the abdominal area. The ultimate goal with biofeedback is to strengthen the muscles around the rectum. By getting that muscle back into shape you in essence lessen the amount of feces necessary for the child to feel the urge to have a BM. You can also achieve a strengthening of the external sphincter to work for better control. Biofeedback is also useful in learning the proper coordination between the internal and external sphincter muscles. BTW - when I tell Amy to push when she's on the potty she always burps - not doubt she's using the wrong muscle group!

            No one can promise us that this will make Amy continent. It will however, we believe, make her better. However, Amy found the probe to be uncomfortable and was not willing to try it at this time. But Amy has a very tight anus - I don't know that other children would have as much trouble with it as she did. I probably also did not do a very good job of preparing her for the session. Dr. Pena reminded me that my goals will not necessarily be her goals at this time and to wait. Quality of life is what we are striving for and for us to battle over biofeedback twice a day would be counterproductive. When she's ready, we'll do it.

            Another source of information is IncontiNet - a web site for folks who are interested in biofeedback for urinary or fecal incontinence. It is maintained by Dr. Perry who invented the most widely used biofeedback equipment.

            Posted 2/18/98

Recently, I met with a Registered Nurse Practitioner at Incon-Therapy - a new therapy program that has recently opened in Birmingham, near our home. They use a biofeedback system with external sensors - no internal probe. I have not been able to find any objective information on the validity of their claim that these sensors are just as effective as the probe in helping the patient distinguish between abdominal muscles and the pelvic floor muscle. This office also lacked any experience with fecal incontinence - their patients have all been urinary incontinent.

From Betsy (Mom to Matt, 12, HIA)

I am convinced that some children have the nerve innovation to learn biofeedback and some do not. I have worked with biofeedback a lot as a health care professional and I was excited to try this with my son. We tried biofeedback and relaxation therapy, neither worked. He would actually get more uptight trying to "feel" something he was not able to feel. The more he tried, the more frustrated he became. After several failed attempts, the only thing that ended up working for Matt was a cecostomy. At this point in time, I don't view it as a failure, but as the best alternative, given his physical issues. I think that it is our obligation as parents to push them when appropriate, recognize their limitations, accept them for who they are and look for alternatives to give them a "normal" life.

From PTN Vol. 6, #1, Book Review by Bonnie

Book: Continence with Biofeedback by Susan Trunnell

            Chapter 2, Anorectal Anatomy and Physiology, is valuable reading in and of itself. The explanations of the defecation process are well done and easy to understand. It includes sections on the factors affecting continence and methods of diagnosis and treatment.

            Certain criteria must be met for a child to be successful w/ biofeedback: 1) at least 5 years old 2) motivation 3) rectal sensation. Studies have shown that biofeedback can improve external anal sphincter function and rectal sensation in patients who have existing nerve pathways to those areas. However, biofeedback does not appear to improve involuntary responses such as the defecation reflex or the internal sphincter function.

            The book is available from the PTN lending library. There are two biofeedback tapes available. One is by Dr. Bruce Masek and was given at the UOA Conference in Aug., ‘96. The other is by George Rodriguez (from Dr. Pena’s office)

From George Rodriguez Tape

The relationship between the biofeedback provider and the patient is very important. They need to have a good relationship. A parent needs to be very involved. Patients have more success when there is less stress during at home practice sessions. Out of 9 patients - 2 had no improvement, 4 had some improvement, and 3 had excellent results.

 

TES

Information about TES From Cynthia (Mom to Alec, 4yrs)
I just found a web site talking about Therapeutic Electrical Stimulation (TES). This is something we are about to start doing with Alec. It has been shown to improve sensation in some children with neurogenic bladder caused by spinal defects. It has also improved bladder capacity in some children and can improve bowel continence. The site talks mostly about Cerebral Palsy patients, but TES has been done with spina bifida as well. No one seems to know a lot about kids with anterior defects as many of our kids have, but that is mostly because these defects are considered "rare" in the first place...though some docs think it is just because they are often not detected. At any rate, you can learn more at http://mayatek.com
From Caroline (physical therapist, Mom to Michael 10mo., HIA, VSD, TC)
I just talked w/ Karen Pape, M.D. this a.m. She is a neonatologist by training, and has 30+ years of experience. She told me that the TES - threshold electrical stimulation machine, should work very well for IA kids/adults. She has done some research w/ IA patients, and has found it to be successful in making kids/adults continent. They measured improvement by the following: -the young man decreased from daily enemas to one enema a month -he had accidents prior to the treatment, and rarely had them after -his anal spincter force improved from 250g to approx. 350g. She said that 60% of the children with spina bifida are continent WITHOUT laxatives, or any other type of medication. She said children at the age of 3-4 years old, or she said a big 2 year old, could begin using it. The TES machine she designed, is made to be used at night while the child sleeps. There should not be any pain involved at all, and is time efficient for the parents, and user friendly for the child - doesn't get in their way since they use it while sleeping! TES or Threshold Electrical Stimulation works by using electrical impulses over the sacral nerve distribution, and improves fecal continence by improving muscle function. This unit is unique for IA kids, because it is designed to be used at night in the privacy of your own home. It uses little electrode pads that are placed on the skin, one on the abdomen, and one on the buttock region. Dr. Pape said that this program IS effective without putting an electrode in the area of the pelvic floor (area of genitalia), so it is less invasive than a rectal probe. It is my understanding that this program may need to be used for 6+ months, however each child/adult may be different. Biofeedback uses surface electrodes (on the skin) or rectal probes. Biofeedback does not work with electrical impulses, therefore the machine will not strengthen muscles for you. This machine helps teach you when you are contracting a muscle appropriately by giving you feedback - a light or sound will come on. Biofeedback has been successful with IA kids. I agree strongly with Dr. Pape that, the COMBINATION of TES and biofeedback will help more IA patients with a more successful outcome, than just biofeedback alone or TES alone! Most insurance companies can be billed, and will pay for the machine rental (some may even pay for the entire unit, since it is designed to be worn for several months). You will need to have a qualified physical therapist, or qualified physician teach you how to use the machine, and monitor you or your child. I am willing to assist you, or anyone else, in finding a qualified person in your area to help you with these units. I believe Dr. Pape will assist me in designing a program most appropriate for our IA kids/adults! TES works in the same manner that neuromuscular stimulation works, however it is my understanding that it is a 'subthreshold' neuromuscular stimulator. I think this means that the machine is designed not to actually contract the muscle, whereas the neuromuscular stimulator can (don't quote me on this, Dr. Pape will be sending me more info soon). Essentially the TES machine can strengthen the pelvic floor muscles WITHOUT a rectal probe. A study entitled, "Initial experience with home therapeutic electrical stimulation for continence in the myelomeningocele population (1997)" found that "when [TES] was administered at home by parents while the child sleeps, therapeutic electrical stimulation is safe for bladder and bowel continence in the myelomeningocele population. It seems to increase significantly bladder capacity, does not appear to change urethral pressure profile and results in a subjectively improved sensation of pelvic fullness, enhancing urinary and fecal continence...." (Mean actual bladder capacity increased from 133 to 196 ml.)
 
This of course is only one study.
FromConnie (mom to Billy 8mo. TC, CRS, LIA, etc.)
I mentioned TES to my ortho on Friday and he didn't seem to think it was worth it. Billy has a little muscle (very little) in the back and next to no muscle in the front. He said there wasn't enough muscle to target in the front, you could strengthen it a little but it would not grow because new muscle cells can't be made. He felt if the back of the calf got too strong in proportion to the front (which it already is), it would tend to pull his foot back down and cause problems with the leveling of his foot for walking.. Our previous NS stated "I suspect that nerves from L4 down are markedly atrophic"). Also, he stated that electrical stimulation to make the muscles thicker and fatter is theoretically possible, but if the nerve roots are congenitally hypoplastic then the muscles will never bulk up significantly. I had forgotten about that, but it pretty much echoes what the ortho said Friday.

Personal Experiences using TES

From Nancy (Mom of Ross, tethered cord, incontinent) Date: Mon, 01 Sep 1997
Just thought I would pass on a therapy we are going to try. It has mainly been used for kids with Spina bifida, cerebral palsy and tethered cord, but I also read an article where it was used with kids with pullthrough operations. Basically it is a unit that you attach to your child at night that gives off a below the level of sensation electrical pulse. As my urologist said, it is "voodoo" but they are finding that the kids that respond go from incontinent to continent,that you get muscle growth and sensation of needing to go. Anyway, we are going to try this on Ross. It is a long term therapy, you have to do it every night for 6 months to a year and possibly longer. I figure if it only helps him develop stomach muscles to push the BM out we will be ahead. You can learn more about this therapy at the following Web site: www.mayatek.com Date: Sat, 01 Aug 1998 TES is used to deliver low level electrical stimulation via wires and electrode patches to areas on the body overnight. The company claims that it can be used to increase muscle mass and strength as well as help with continence. We are using it for muscle strength and continence. Before it broke, each night we attached four electrode pads, one each to the front and back of Ross' stomach area, and one each to the thigh. He wears the unit in a pack around his waist. It costs about $1,000.00 plus a couple of hundred for the electrodes which need to be replaced periodically.
From Karen B. (mom to Sammy, 3 1/2, cloaca)

Date: Mon, 1 Sep 1997

We have been using TES on Sammy for almost a year now. We are not using it for continence, but to increase the muscle mass in her leg that has nerve damage from the tethered spinal cord. Her right leg has always been smaller and weaker than her left, and her PT (and the folks at Mayatek) thought she would be a great candidate for the TES. She has in fact come a long way in the past 10 months - she is running and jumping, etc. I have read some articles about the use of TES for achieving bowel continence, and it seems to have some validity in kids with good sensations and muscle structures, mostly in combination with biofeedback.

Date: Fri, 31 Jul 1998 23:12:46 EDT

We have been using TES on Sammy for her leg muscle that was damaged from her tethered cord. We have been using it for almost two years now, started on her calf and thigh, and then moved the thigh one to her butt. She has made incredible strides in her leg strength, but in this case it is all subjective - there is no way to tell if it helped or if she just got stronger on her own. But, we are still using it!

From 1/16/01

We used TES for Sammy's leg and foot for a year or so when she was about 2-3 years old. We did speak to Pena about it for continence, since some of Dr Pape's papers talked about it for continence for kids with IA. At that time, she only had one study for IA kids, and the results weren't that conclusive. TES is used to build muscle mass, using what is already there. You attach the electrodes while the kids sleep, and it stimulates the muscle. For many kids with IA, they do not have nerves to their rectum, so even if you build muscle, there are no nerves to fire the muscle and make it contract. So, basically you would have muscle mass, but no ability to use it.

From Bob

LMC TES stands for electrical stimulation of muscles through the skin. Has anybody had success with this? My wife who is a nurse notes that several children she works with have used it over a period of years (it takes that long to have an effect). The children have regained muscle strength and consequently better balance and endurance.

We tried TES for about 9 months. We consulted with a physiatrist and a p.t. who specialized in TES training for children with a special unit. It was designed for use at night with a low electrical rate, as opposed to the typical adult use for short duration with a higher rate. Does that make sense? Anyway, with our doctor's help (he wrote a letter for us), and our persistence, we did get insurance to cover the cost of the unit, the electrodes, and the p.t. appointments to learn how to use it - plus follow up appointments. We used it quite consistently for about 9 months and then less rigorously for about 9 more. It's quite cumbersome for the child to sleep with all these wires on them and we found that no matter what we did, they quite often detached enough to shut off the machine during the night. Then, if Natalie had to get up to go to the bathroom, it was just sort of a hassle to disconnect and then reconnect the wires, etc. After my daughter broke her leg and couldn't use the TES because of the cast (for about 4 weeks), we weren't as motivated to continue. I'm embarrassed to admit we haven't used it all for almost 18 months! I've heard mixed reviews. The doctor who developed the machine made quite a convincing presentation, which is why we pursued it in the first place. Sorry, I cannot for the life of me rememeber her name right now. However, all other doctors I checked with were skeptical, but not negative. Perhaps we didn't have fabulous results because we didn't stick with it long enough.  Anyone else try it? I'm getting one for my son this month! I can't wait to try it. From Karen Lawliss (mom of Brenden, 23 months, SB (L4/L5) We are going to try TES with Brenden. I am very optimistic on it giving him some kind of muscle tone in his lower legs, then when he's older we'll use it for his bowel and bladder as well.

Margaret Staab (Mom to Shane, 11, and Brenden, 9 with lmc-tcs) We tried what was called Biofeedback with Brenden for two years. He was age 3-5. It was from this same company, Mayatek. We still have the unit. It was a probe that he inserted in his rectum hooked to a battery pack. It could be adjusted to different frequencies. It was 10 seconds on, 10 seconds off or something like that, for 30 minutes a day. Many doctors were skeptical. Insurance did pay for it. He does have bowel continence now. I became very knowledgeable about bowel programs and spent all of last summer getting him on a successful diet that his bowel incontinence ended. We did do the Biofeedback every day for two solid years. The doctors all said it really improved his anal tone. I do think it contributed to his eventual bowel continence.

Rectal Neuromuscular Stimulation

From Caroline

The purpose of bio-feedback is to strengthen muscles and it is also used to relax muscles. Neuromuscular electrical stimulation (NMES) is similar to biofeedback in that it too strengthens weak muscles. NMES however actually contracts the weak muscle for you, whereas with bio-feedback you must contract the muscle yourself. Muscle strength is rated on a scale of 0 to 5. 0 - muscle contraction is absent, 1 - trace muscle contraction, 2 - poor ..., 3 - fair..., 4- good, 5- normal... Since a NMES machine will contract the muscle for you, it may strengthen a weaker muscle more than a bio-feed back machine. Once the muscle becomes strengthened by NMES, you are more aware of HOW/WHERE to contract the muscle. Once you know HOW and WHERE to contract the muscle, bio-feed back becomes more beneficial. I believe if a plan can be developed to incorporate these two techniques, the success rate of the program would improve. .I do not know which population uses the rectal NMES most but, I do know geriatrics, and women that lost bowel control after child birth complications are using it. I am at this time researching NMES units that would be appropriate for adults, and children, and the specific parameters to be used on these machines. I have found a unit that may be appropriate for adults, but not yet for children. I have a call out to this company to see if they would be able to make a smaller rectal probe for children.

American Medical System's Acticon Neosphincter

FDA Panel Backs Device to Stop Uncontrollable Bowel Movements

WASHINGTON (Reuters Health) Aug 17 -

Expert advisors to the US Food and Drug Administration (FDA) on Friday endorsed the approval of a novel implantable device designed to imitate the function of the sphincter muscle. The FDA Gastroenterology and Urology Devices Panel voted 7 to 1 in favor of recommending the approval of American Medical System's Acticon Neosphincter, a silicone-based prosthesis consisting of a balloon and control pump. The device is designed to imitate the sphincter muscle by allowing patients to open the anal canal using the control pump to inflate the balloon. The device already is available under a humanitarian device exemption, which allows it to be used as a treatment of last resort. But insurance companies often refuse coverage for devices under investigation, and at present there are no alternatives for patients who fail to respond to conventional treatment. Still, the device is likely to remain a treatment of last resort even if the FDA should follow its committee's recommendation and approve the device. According to pivotal clinical trial data submitted to support the Minnetonka, Minnesota-based concern's device, there were 395 device-related adverse events among the 115 participating patients, leading committee members to urge that the device be used only in the most severe cases. "I urged the use of it as a treatment of last resort because the device has such a high complication rate. But short of this, I think it's a good choice," Dr. Karen Woods told Reuters Health after the panel meeting. Dr. Woods is a clinical professor at Baylor College of Medicine in Houston, Texas. Common adverse events included pain, infections and thinning of the skin or tissue over the implant. Thirty-four patients eventually had to have the device surgically removed due to various adverse events. But patients who suffer from severe fecal incontinence generally become socially isolated, Dr. Douglas Wong, an associate professor of medicine at Cornell University Medical School and a principal investigator in the clinical trial, pointed out to committee members. As a result, Dr. Wong and his colleagues said, the high rate of adverse events and removals is acceptable if patients understand the risks. The committee members agreed, noting that patients with successful implants seemed to experience a dramatic improvement in their quality of life. However, the committee also said that the approval should be conditional upon the company's developing a training program for physicians and limiting use of the device to patients 18 years and older. The vote means that the FDA is likely to approve the device. Although the agency is not bound by its committees' votes, the agency generally does follow their advice. If the FDA does clear the device, the US will be following in the footsteps of Europe, Australia and China, where the device already has been approved.

Anal Dynamic Graciloplasty

From PTN Newsletter Article on Web Site

This surgery is the closest thing to replacing a dysfunctional sphincter as the medical community has come. A procedure in which the gracilis muscle found in the upper leg is transposed to the anus with the implantation of stimulating electrodes. By gradually increasing the length and duration of the electrical stimulation the implanted muscle becomes closer in composition to resemble that of the external anal sphincter. Because dynamic graciloplasty requires lifelong stimulation of the transposed gracilis muscle in order to retain a prolonged contraction, the increased voltage needed for stimulation remains a source of concern for the researchers. But is this for our kids? Probably not. What dynamic graciloplasty fails to address is the other issues concerning incontinence, such as motility and absorption. Unfortunately replacing the anal sphincter is not enough of a treatment for the majority of IA patients.

 

Mixing Eastern and Western Medicine

Article in PTN Newsletter by Diane Baxter. Located on Web Site.

After trying everything (increasing fiber, liquids, Metamucil, Colace, and Sennakot, keeping food/poop logs, etc.) to eliminate her son Devin’s hard stools and severe cramping and spasms of pain that would last for hours at a time, Diane tried a Naturopathic doctor who did blood tests that showed that Devin is allergic to wheat, dairy, eggs, citrus, oats, peanuts, and chocolate. Almost right away the cramping and pain went away. Devin had just turned four. He was still having hard stools and on enemas daily. She went to Dr. Wang who specializes in pediatric Tuina, one of the main branches of Traditional Chinese Medicine. A form of medical massage that has been used in China for 2500 years. Basically, Tuina is a kneading of acupuncture points and a stroking of meridians in fast repetitious motions. There are no needles in Tuina. Shortly after seeing Dr. Wang, Devin’s stool became soft and is remaining so without any oral laxatives. Besides his stool being soft enough to pass easily and in enough quantity his internal intestinal muscles are able to push the stool out. Previously, Devin was unable to bear down. He is still on daily enemas. Dr. Wang taught Diane some basic Tuina that Devin needs which she does almost every night, taking only a few minutes. Names and numbers for 3 Tuina doctors in the US are listed.

 

Motility

Motility and the Defecation Process

From Surgery of Infants and Children, Edited by Oldham, et. al,, Chapter 83 Rectum and Anus by Charles Paidas and Alberto Pena

Constipation in children with ARMs is probably the result of hypomotility of the rectosigmoid.

Continence in the normal child requires intact sphincter function, anal canal sensation and proprioception, and coordinated colonic as well as rectosigmoid motility. It is thought that in normal children innervation of the anus and anal skin is not present at birth, but is acquired as the child learns to defecate and, therefore, toilet train. It is well-known that it takes between 3 and 6 hours for the gastric content to transit the small bowel. The intestinal content reaches the cecum in a liquid state. It then takes about 20 to 24 hours for that fecal material to reach the rectum and become formed (solid). The rectosigmoid acts as a reservoir and keeps the fecal material for variable periods of time. The anal canal, however, is usually empty because of the action of the surrounding sphincteric mechanism. Occasionally, however, there are peristaltic waves that push the fecal material toward the anus. The voluntary sphincter can be voluntarily relaxed, allowing sampling to occur. The rectal content moves distally and touches the exquisitely sensitive tissue of the anal canal, providing the individual with valuable information related to the nature of the rectal content (gas, solid, liquid). Depending upon the surrounding social circumstances, the individual may let the rectal content escape or may contract the sphincteric mechanism pushing stool or gas back into the rectum. The distention of the rectum produces a vague sensation of fullness or even a colicky pain (proprioception) but does not provide specific information concerning the physical characteristic of the content. We know very little about the mechanism that triggers the peristalsis of the rectosigmoid to defecate but certainly we know that the degree of rectal fullness has a definite role. Normal defecation allows a massive emptying of the rectosigmoid followed by another resting period of about 24 hours, during which the rectosigmoid acts again as a reservoir. The importance of rectosigmoid motility has been highly underestimated in the past for a variety of reasons. Tonic, phasic, and high-amplitude propagated contractions (HAPCs, those greater than 80mmHg); and rectal motor complexes (RCMCs) are the hallmarks of normal colonic motility in children but they are not necessarily representative of rectosigmoid motility. These responses are intrinsic to the bowel wall and are derived from brain-gut connections. With age in normal children, the number of HAPCs falls and this parallels the decrease in daily bowel movements. The RMC is the only colonic activity that occurs distal to the rectosigmoid. Colonic motility as defined by both the HAPCs and the RMCs should be stimulated after eating. This colonic response to food is diagnostic of normal colonic motility and forms the basis for future studies of abnormal colonic motility in children with pseudo-obstruction. None of these colonic motility studies evaluate the propagation of a wave through the anal canal. Most of these studies stop at the rectosigmoid, which is the area where most HAPCs stop. Furthermore, the role of the more distal RMCs is unknown.

 

Drugs to Help Motility

From a Chapter on Pharmacotherapy in Information from Motility Foundation (by Flores and Grill)

            The article analyzes agents that increase motility.  “In the last two decades, the first useful drugs to improve motility and transit were developed.” (While I don’t know when it was written, it does reference several ‘93 articles.)

            Bethanechol increased lower esophageal sphincter (LES) pressure, increased the amplitude and decreased the velocity of peristalsis in the esophageal body, and improved coordination of esophageal peristalsis. Side affects, which occur in 10-15% of patients, include abdominal cramping, blurred vision, fatigue, and increased urinary frequency. Bethanechol has minimal or no effect on gastric emptying or small intestinal or colonic transit. Major site of action is the esophagus.

            Metoclopramide - Side effects occur in 20-30% of patients and include tremors, insomnia, facial spasms, etc. In addition, the effects diminish rapidly distal to the proximal small bowel, and are minimal to the colon. Major site of action is the esophagus and stomach.

            Domperidone - Domperidone increase LES pressure, inhibits relaxation of the gastric fundus, enhances contractility of the antrum, and improves antroduodenal coordination. Side affects in children have been minimal, and have included transient diarrhea. Central nervous system side affects have been reported in a few infants and in patients given more than 0.6mg/kg. Major site of action is the esophagus and stomach.

            Cisapride stimulates gastrointestinal motility. Oral cisapride is almost completely absorbed from the gastrointestinal tract. Cisapride increased the LES pressure and the amplitude of esophageal contractions in infants w/ GERD. In a number of studies, cisapride accelerated gastric emptying in children with functional gastrointestinal symptoms or GERD. In contrast to adults, constipated and encopretic children generally have a good clinical response to prolonged administration of cisapride, even when constipation is intractable and poorly responsive to high dose laxatives. In most studies, stool consistency improved, the need for laxatives decreased, soiling episodes became significantly less frequent, and stool frequency increased. The thresholds for sensation of rectal distention and for elicitation of the rectoanal inhibitory reflex decreased during treatment with cisapride, whereas total transit time shortened. Side effects may include transient diarrhea and behavioral changes, such as increased activity or irritability, in fewer than 5% of children. Major site of action is the entire gastrointestinal tract.

            Erythromycin increased LES pressure but did not affect esophageal peristalsis. Colonic and gallbladder motor activity may also be increased. Major site of action is the gastric antrum. At the doses used for motility effects, antibiotic effects are minimal. (Note: this implies that as an antibiotic, it causes diarrhea.)

            The cathartic laxatives act by increasing colonic motor activity. Two classes within this group are the anthraquinones, exemplified by senna derivatives, and the polyphenolic drugs, which include bisacodyl and phenolphthalein. The anthraquinones, also known as anthracenes, are derived from plant products such as cascara, aloe, and senna. These laxatives are carried unabsorbed into the colon, where bacterial action converts them into an active form (i.e. aglycon) which enhances defecation by directly stimulating colonic peristalsis and inducing fluid secretion. The polyphenal bisacodyl induces high-amplitude peristaltic contractions that mimic the post-prandial activity seen during colonic motility studies. Polyphenols are effective in patients with slow-transit constipation. Prunes contain a derivative of a polyphenolic compound, suggesting a mechanism for their laxative effect.

From Drug Safety, 1994 Jan, 10(1):47-65.

Adverse effects of drugs used in the management of constipation and diarrhea. By Gattuso JM; Kamm MA.

Cisapride is a prokinetic drug which has been used in the management of chronic constipation. Cisapride increased stool frequency and reduced laxative consumption in patients with idiopathic constipation. There were no significant adverse effects. Headaches and urinary frequency are occasional complaints. The evidence for its efficacy in constipation is contradictory.

From Surgery of Infants and Children, Edited by Oldham, et. al,, Chapter 83 Rectum and Anus by Charles Paidas and Alberto Pena

Constipation in children with ARMs is probably the result of hypomotility of the rectosigmoid. Usually, suppositories, enemas, or colonic irrigations suffice. Constipation from functional, postoperative, and neurologic etiologies has been treated with the prokinetic agent cisapride. It stimulates the smooth muscle of the entire gastrointestinal tract by releasing acetycholine, shortening transit time, and causing improved sensitivity to distention.

Prilosec

From Rochelle (Nurse, adult IA & cloaca)

One of my kids (non IA) as been on prilosec since infantcy, we just took him off last week at 21 months. I've done research and talked with the drug reps. With regards to children and prilosec, side effects that have been shown in small case studies are altered liver function tests (which in most cases normalized once the medication is stopped), B12 deficiency, and develpoment of eshopageal/gastrointestinal polyps. I had my child's liver panel and B12 level checked and both were normal. If he is able to stay off prilosec he will go in for a scope to ensure esophagus/intestine/stomach are normal.

 

Safety of Cisapride

Note: See the Anesthesia section under General Information to see how Propulsid interacts negatively with grapefruit juice.

From Cisapride for GERD: A Placebo-Controlled Double-Blind Study, ‘95 American Journal of Gastroenterology (Richter and Long)

Objective: To evaluate the safety and efficacy of cisapride (a recently introduced prokinetic agent)in patients w/ GERD. Safety evaluations included vital signs, electrocardiograms, clinical laboratory tests, and reports of adverse events. The most frequently reported adverse events were diarrhea, headache, and sinusitis. These events were similar to those observed in other studies of cisapride. Clinically, cisapride has been shown to increase both LES pressure and esophageal motility. It may be able to improve gastric motility to some extent. Previous studies have shown that cisapride can increase LES pressure and increase the motility of both the esophagus and the stomach.

Note: This was a 12 week study done on adults

From the United States Pharmacopeial Convention, Inc. (USP)

USP is the organization that sets the official standards of strength, quality, purity, packaging, and labeling for drug products in the U.S. (This was an insert w/ Cisapride I bought.) Cisapride is used to treat symptoms such as heartburn caused by a backward flow of gastric acid into the esophagus. It may also be used for other conditions as recommended by your doctor.

Precautions: Cisapride should not be taken with fluconazole (Diflucan), itraconazole (Sporanoz), ketoconazole (Nizoral) or miconazole (Monistat i.v.). Doing so may increase the risk of serious side effects affecting the heart and could be life-threatening. This medicine may cause your body to absorb alcohol more quickly than you normally would. Check with your doctor before drinking alcohol. This medicine may cause some people to become drowsy or less alert than they are normally.

Possible Side Effects: Rare - convulsions (seizures), report to your doctor immediately. Less common side effects that usually do not require medical attention include - abdominal cramping, constipation, diarrhea, drowsiness, headache, nausea, unusual tiredness or weakness

From the News on June 30, 1998

The FDA is concerned that the Propulsid pill for heartburn may cause heart rhythm abnormalities (arrhythmia) when taken with certain antibiotics, antifungals, protease inhibitors, and various other drugs. It should not be taken by patients with kidney failure, vomiting, or diarrhea. See http://cnn.com/HEALTH/9806/30/heartburn.drug/ for more information.

 

Safety of Aminoglycosides s - ex. Gentamicin, Erthromycin

From Diane (SAHM to Tyler, HD)

I know firsthand the effects of adverse drug effects. The hospital released my son less than 24 hours after birth. When I brought him back 2 days later for lack of pooping, they took x-rays and said it was just gas and sent us home again. Another 2 days later he was so dehydrated but they finally admitted him because this time there was a pediatric consult in the ER who recognized the megacolon. They gave him Gentamicin pre and post op (unknown to us) which wiped out his hearing and balance. Ty is 2 now and cannot even walk plus he has a total hearing loss and is currently receiving all kinds of therapy: occupational, physical, auditory-verbal, etc. Ty had the peak and trough testing but was not carefully monitored. Even then, a Chicago doctor has found that it is very difficult to monitor aminoglycosides such as Gentamicin or Erthromycin because they are taken up in the inner ear so quickly and eliminated. Another doc, Dr. Flockhart, appeared on Dateline about these drugs and believes some people have a genetic predisposition to adverse reactions. Lastly, parents are now required to sign consent forms if their kid is given aminoglycosides. The casual use of such drugs saddens me. The aminoglycoside toxicity support group consists of over 200 members already in US alone and growing.

Note: Biaxin is antibiotics based on erythromycin.

 

Motility Testing

From a UOA convention in Anaheim in ‘97.

From Teresa (Registered Dietician, mom to Caroline, DS/LIA)

            Dr. Hyman and Dr DiLorenzo do the most sophisticated motility studies in the country.

            The info on many of our kids having high amplitude colon/bowel contractions ALL the way to the rectum, versus having a normal slow storage area at the end there, and this being responsible for a lot of the soiling, seemed logical and was new info for me.

            As I understood it, Dr. Hyman was talking at that point about the different pull-throughs available for babies with HD. It seemed that most often mostly only the lower colon is affected (no ganglion); this is the section that is removed or pushed aside or stripped (depending on the choice of procedure). Normally this area has few contractions to allow it to serve as a storage area for stool until you are ready to have a B.M. The ascending and transverse sections of the colon have much stronger contractions to help move the stool along. When a higher up section of the colon is brought down to the rectum or anus as part of the surgery, it retains its tendency to contract strongly. These strong contractions and limited poop storage capability may contribute to why many kids soil a lot throughout the day and/or night. If you keep having strong contractions that don't slow down for storage then you are going to poop often and not have time between the sensation and needing to go

            He stated there is no role for diet changes in helping kids with motility disorders. He emphasized medications.

From Susan (mom to Joey, 8, dysmotility, vh, migraines.net)

My son had this procedure too. Our insurance did cover it. It was expensive. I think around $5000 for everything. Dr. Hyman's office did all the work to get our insurance to approve it. I have heard of another procedure explained by Dr. Flores where they can measure what is going on with the colon with external devices. I don't know if it is as accurate. I also have heard of EGGs. My impression was that Dr. Hyman was not an enema advocate. He seems to want to use oral medications.

From Sandra (Mom to Ryan, middle IA sacral abnormalities)

            Let me try to explain my understanding of this since Ryan had the motility study and manometry study done last month by Dr. Hyman. In a normal person, about 20 minutes after eating the gut starts contractions which is supposed to move stuff along. Hyman measures these contractions by inserting monitoring devices throughout the large intestine. On a computer screen, you can see these contractions start and you can see how strong they are. Ideally you want to see strong contractions starting at the proximal and move to the distal colon. If the contractions stop anywhere along the path then there's a problem. The longer the wait for the contractions to start, the slower the motility. In Ryan’s case, the contractions did peter out at the rectum but since he felt like he had to push he did and once he saw that by pushing he could make the lines on the computer jump, he spent the next 10 minutes doing it. For us it was a visual picture of what Ryan's gut can do. What "normal" actions it has and what he has learned to do to compensate for his abnormality.

            I did bring Ryan’s Colonic Manometry and Anorectal Manometry report with me today. I reread it trying to understand the "technical stuff”. The 3 sentences that I think are interesting are "There were four high-amplitude propagating contractions during the final 30 minutes of the study. All of these began in the most proximal recording site and propagated over at least 40 cm, some going to 60 cm. None propagated through into the neorectum." At the end of the report is the Impression section. It says:

Normal colonic manometry:

There are three features to normal colonic manometry:

1. The presence of high-amplitude propagating contractions.

2. An increase in motility following a meal, a gastrocolonic response

3. An absence of discrete abnormalities.

From follow-up call with Sandra on 2/7/98

            There are two tests that Ryan took, the colonic manometry (motility) test and the anorectal manometry (about $6K). The anorectal manometry involved inserting a 3” bulb up the anus, asking the child to squeeze his anus, and measuring the strength of the sphincter muscle. The purpose of the test is to determine if the child has the ability to hold stool in during propagating contractions (and possibly to see if he is strong enough to push it out? my thought). Ryan was 6 years old at the time and able to cooperate.         The motility test is more accurate. Ryan was in the hospital overnight. He was given Golytely to clean out the bowels and fasted the night before the test. In the morning, he was put under general anesthesia while a colonoscopy was performed. During the colonoscopy, a catheter with 8 sensing stations was inserted and left in the colon - from distal to proximal. The test began with 100 min. of fasting during which you wouldn’t expect to see many contractions. Ryan was given lunch. Contractions should start within 15-20 min. His started at 35 min. The height and duration or length of the contractions was measured. The amplitude of Ryan’s contractions diminished greatly at the rectum but he was able to push and cause the amplitude to increase. Having this information helped Sandra to know when to do toilet timing (35 min. after a meal) and to know that he could hold it in and push it out. When she hears gas, she tells him to go poop. Dr. Hyman (in California) recommends Dr. Carlos DiLoranzo at Pittsburgh Children’s Hospital (412) 692-5180.

From Connie

Hyman himself said at the conference, these tests only show where the motility problem itself is, there is really nothing "definite" that can be done as a result of these tests. They basically just confirm a motility problem. Our surgeon, Dr. Fonkalsrud, says the peds GI department at UCLA can do the same testing Hyman does.

From Beth

Today is our last xray with this motility test. To begin the test they had Ashllie swallow a capsule that had 24 little tiny o-ring markers this was called the Sitzmarks Radiopaque Markers. On day 2 we took her in and had an abdominal flat plate xray, then again on day 5 (which is today) another flat plate xray. The GI dr said that normally they pull all laxatives and thickeners during this test but due to Ashllie's already full of stool and it would only cause more blockage then she already deals with we were to cont. her laxatives and Miralax. On reading the results this is what the package insert instructions say:1) When over 80% are passed by day 5, colonic transit is not grossly abnormal. 2) When remaining markers are scattered about the colon, condition is most likely hypomotility or colonic inertia. 3) When remaining markers are accumulated in the rectum or rectosigmoid, the condition is most likely functional outlet delay, e.g., internal rectal prolapse, animus. When we hear from the dr's after this last xray I will post the results..

Preparing a Child for Manometry Testing

From Scott (Dad to Kelley)

From a regular Dad's point of view she just played and talked and explained and let Kelley 'vent' a little about docs (and about Mom and Dad), and then she taught her how to have a little control in these frustrating situations - ("Some man that Mom says is a 'good' man and a Doctor wants to do things that I know will help me get better, but I still don't like the whole idea of it...." etc.) They usually started with a little venting, then a little explaining. She worked with the doctors to know exactly what the procedure entailed step by step and got samples of the equipment, etc., so Kelley could understand and would know exactly what was going to happen. It was much better, and Kelley still remembers Sue as a friend and mentor, not so much a DOCTOR. I guess I should also say that we tried a couple of 'child psych' types before we found her. Most were way to adult oriented and 'dry.' Sue was fun and related to Kelley more like a mentor. She made the process of getting ready enjoyable for Kelley so that she was not as tense about the procedures. She made a calendar for the week of our planned stay in Pittsburgh (and later in Denver for her surgeries) with fun stuff to do and pictures, and a journal to draw and write in. They reviewed it each week before the procedures (and later surgeries) so Kelley could 'plan' the whole thing in her imagination and see it (the easy day, the hard day, the really hard day, and, the work to get ready to go home days, etc.) She gave her some techniques to relax and to just get through it with, and asked the doctors to agree in front of Kelley that if she needed a break to collect herself that they would give it to her - (only a short break -- no procrastination)! Most of the doctors were willing to give it a try -- some had more patience than others. To say that it was easy on any of us would be a lie, but it was a whole lot better than one long tantrum and no results.   There was lots more, but that gives you the flavor -- it worked great for us! Maybe if you leave her a message tonight she could call you before she gets started w/her day tomorrow. Sue Pepper (303) 722-8101

Other Sources of Info on Motility

Guardian web page http://wg.rnet.com/maniac/guardian.htm (HD, motility disorders)

APHS web site: http://www.tiac.net/users/aphs/index.htm (HD, motility, pseudo-obstruction)

Dr. Alex Flores is now with Pediactric GI Associates in Waltham MA. The phone # is 781-466-8988. They are ass'd with the Floating Hospital...(NEMC).

Enemas

 

Considerations of Doing Enemas

 

Never Give a Barium Enema

From Pena’s Office

From Karen B. (Head of PTN, mom to Sammy)

I can't find my reference offhand, but I do know that Pena's office says how dangerous a barium enema can be for these children.

From Suzin (adult, HIA)

Kathie Giordano’s warning: "Don't ever let anyone give your child barium; insist on a water soluble alternative" is glued on my mind.

From Deborah (mom to Lydia.edu)

Just wanted to say I got very, very different information about the barium that is currently being (Oct. ‘99) used for radiological tests. The barium that is being used now does not harden or cause constipation. I had more than one person tell me this and was even given the product flier from the barium itself. It is now mixed in a solution much like Golytely--it can actually cause diarrhea. It is a preferred medium for actually seeing what people need to see. Lydia had it and had absolutely no problem.

The Differences Between Hypaque Gastraffin, and Barium Enemas

From Joe (radiologist, father of John , IA , 2months)

Hypaque and Gastrograffin are "water-soluble" iodine based contrast agents. Water soluble agents have different imaging and physiologic properties when compared to barium. They are not fully interchangeable in all situations. For example, in infants and children water soluble agents are often used. It would depend on the situation as to which water soluble agent is used (often based on whether there is a desire to pull fluid from the body into the colon (which can cause a cleansing of the colon - the so called therapeutic benefit of a hypaque enema) or to not upset delicate fluid and electrolyte balances in a sick infant). Barium is far superior when a mucosal evaluation is need (example- to exclude an ulcer on an upper GI) and is also superior in larger children and adults as it can be made in a more dense concentration than water soluble agents (therefore easier to see on xray). Both classes of contrast agents have there benefits and contraindications. For example, barium can become thickened and cause constipation and water soluble agents can cause major problems if they enter the trachea during an upper GI study. The radiologist and the ordering physician must determine the risk/benefit of the two different contrast medias in each individual case. The more the radiologist knows about the history (including past problems) ahead of time the better the chance of choosing the right contrast.

Experience of PTL Members w/ Barium Members

From Gerry (Adult, HD)

On the topic of barium enemas, when I had them I was blocked for a number of days afterwards so I hated them.

From Mary  (Mom to 2 1/2 yr. old Patrick, HIA)

The barium turns to cement. When it is used for the distal colostogram, it just sits at the bottom, in the rectum until the colostomy closure is done. Patrick had barium put in the stoma when he was 4 months old and it was still there when he had the closure at 11 months. If water soluble dye is used, it absorbs right away and there is no problem. I know for a fact that the barium caused Patrick discomfort. Until he had the colostogram, nothing seemed to bother him. Right after, he started this thing where he squirmed around all the time and he seemed uncomfortable. It stopped after the closure. Pena was appalled that there was that much barium in Patrick, especially since the surgeon who did the colostogram was trained by him.

Thirst/Electrolyte Imbalance Following Hypaque Enema

From Suzin (adult, HIA)

Following a Hypaque Enema, I had a driving, uncomfortable thirst which was not relieved by drinking fluids (65 ounces in 3 hours!). Eventually I recalled Joe's reference to "electrolytes" and then located an electrolyte balancing product which gave me IMMEDIATE relief. My body seemed to need it about every 2 hours for the rest of the day, and a few times the next day or two. Of course I kept drinking lots of other fluids as well. Susan also found out that the Hypaque enema had cleaned her out very well and her normal bowel mgt. procedures were overkill on an already cleaned out colon.

 

Before Starting Enemas

From Karen B. (Head of PTN, mom to Sammy)

If the child is already impacted, the enemas will not clean them out. You need to start an enema program when the colon is not full. If the child is impacted, an enema will cause intense cramping and push the poop up higher. We originally tried enemas with Sammy when she was backed up, and we didn't get a good result. When we started again after having used Senokot for quite some time, we had very good returns.

From Bonnie  (Mom to Amy, 7yrs, VATER)

When we were working with Dr. Pena on bowel management the first week was spent being sure that we were getting her clean every day. He wanted to be sure that the enema that we were using was fully cleaning the colon. Dr. Pena did an abdominal x-ray to check. After establishing that the enemas were doing the job, we then addressed her diet and medication to find the correct routine for her. Dr. Pena was quick to point out that the diet and the medication can be trial and error (each child's needs are unique) but that doing an enema every day was essential.

 

Don’t Combine Enemas w/ Laxatives

From Karen B. (Head of PTN, mom to Sami)

The reason that Pena says you shouldn't use enemas and laxatives in combination is because you want the colon to remain quiet in between enemas so that there is less chance of soiling. If you are using laxatives to keep the stool soft, it will cause the colon to be active, and the poop will be constantly coming out. If you are using an enema program to keep your child clean, they should also be on a somewhat constipating diet. You want to clean them out with the enema, and then have the colon be still for 24 hours until the next cleaning. I know that some people have good results with lactulose and enemas, but I think that they are mostly low IA's. With the HIA's, the entire bowel is probably affected with poor motility, so you really need to get high up there and wash everything out.

 

Deciding to Use Enemas

Note: As with other forms of bowel mgt., an enema routine is likely to allow accidents when a child has a stomach bug.

From Catherine (Mom to Zachary, 6, IA)

I wouldn't start doing enemas as long as your child is going on his own ok until you give him a chance to learn potty training. Once you start the enemas, his body will become conditioned to them. Zachary used to go constantly but now he doesn't go at all if he doesn't have his enema.

From Karen B. (Head of PTN, mom to Sammy)

We have to remember that many of these kids are dependent on enemas, and will be forever, unless there is some miraculous discovery. They don't have the nerves, muscles and sensations for voluntary bowel control, and the use of daily enemas to keep them clean isn't going to "make them dependent" - they are dependent. If you don't empty them out every day, they will either have accidents, become impacted, or both. There seem to be many doctors out there who are so anti-enema for these children, but they do not offer an alternative. What option are they suggesting when they say that enemas will cause long-term complications? Other than experimenting with diet and medication or going back to a colostomy, there really is no other solution. Certainly some of the kids have a better chance at voluntary control than others, I guess I have just resigned myself to Sammy's poor chances. Many of us have worked with medications or diet, and have resorted to enemas because the other methods haven't worked. We tried medications for about 5 months before realizing that it wasn't going to work for Sammy. Now that we are doing enemas, she looks and feels better, there is no worry about accidents, no diaper changes, etc. We don't have to dwell on what she eats, she is not restricted in her diet at all. The enemas keep her clean, they do not upset her, and they only take up 30-40 minutes of her day. For her, it works great. I don't worry that she will *become* dependent on enemas because she is - she has a very high defect, no muscles, no nerves, and she needs the enemas to empty her bowels. I wish we didn't have to do them, but I think the enemas are the best thing for her right now. We are considering the Malone at this time, just to make the whole thing easier for her in the long run.

Since this posting, Karen has determined that hot chocolate and some types of chocolate seem to cause Sammy to have accidents.

From Cynthia (Mommy to Alec, 4yrs, Currarino Triad: hemisacrum, HIA, urinary anomalies, bladder/bowel incontinence.com)

I have to concur with the people saying that enemas are great for their family. Our surgeon was reluctant to start Alec on daily enemas because it would be "invasive." He felt Alec would gain full continence "on his own" because he had good muscle tone. But the doc was not considering the spinal aspects of Alec's syndrome. After years of wrestling with diet (VERY strict), soiling, horrible rashes (one even turned into strep), milk-of-magnesia, and finally a hospitalization for impaction secondary to dehydration from chickenpox our pediatrician sent us to a GI doc. One year ago, around his 3rd birthday, we started enemas. Alec took to them well from the start despite being a "difficult patient" by all accounts. He remembered being impacted and he was tired of the rashes, etc. He understood right away that this was going to help him, not hurt him. Now, unless he is on antibiotics or we skip a night due to laziness, Alec stays clean for 24 hours. He eats whatever he wants. He has no rashes, and he is rarely constipated. We even stopped the milk-of-magnesia, though we still insist on high-fiber breakfasts. The enemas are far better than what we wrestled with before. We couldn't be happier!

From Bonnie  (Mom to Amy, 8yrs, VATER)

We have been doing daily enemas for about 3 years. We turned to that option after a year of constant poopy pants and being afraid to leave the house. We have seen Dr Pena (last Spring) and are successful for the most part with the enemas, watching her diet and using Immodium. She has been wearing panties to school. Now - the down side of daily enemas - from my point of view. It keeps Amy tied to me. She is too old for her father to do them so I must be with her almost every day. It is difficult for friends to have her over for me to be away from home. I will have to go with Amy to summer camp every summer - the camp is willing to work with us - I will probably be a staff volunteer but I will have to be there just the same. When Amy does spend the night with a friend - or a child comes here - we have to make arrangements for Amy to come home or vise versa by about 10:00 the next morning so that Amy can have her enema. However, if Amy does not move toward continence in the next few years we will probably consider having a Malone so that the responsibility can shift to Amy and away from me. The real frustration with enemas, and ALL forms of bowel management, is that it is trial and error and no method seems to last forever. As our children grow adjustments have to be made. Seasonal changes in diet can have an impact (more fresh fruit in the summer, for example) or just being home during holidays (more snacking possibly). It is and will probably always drive me crazy. Amy and I are still working to find the right combo of Immodium. If she gets too much her stools are so bulky that the enemas are not effective. Too little and she is a candidate for an accident.

From Susan (mom to Joey, 8, dysmotility, vh, migraines.net)

I must say that I was one of those people that was totally opposed to enemas. I avoided them completely always believing that my son didn't need those. Last spring he broke down and said, "I just can't drink anymore stuff." (laxatives) I told him he had to and the only option would be enemas. Well he said "Let's try." I got all the info and we started and we are sooooo much happier. Before the enemas we had our son sit on the potty both after breakfast and dinner. He used suppositories to initiate pooping. He would get very distended and have terrible pain. He would vomit fairly regularly and he would have accidents. The accidents were sporadic. He might have 10 accidents one week and 1 the next. He would have terrible migraine headaches with vomiting. He was leaking urine if he didn't take medication not to. He took up to 4 tablespoons of lactulose a day, immiprimine for pain, narcotics for headaches and vomiting. Then we tried the enemas. I can't believe what a change it has made in our lives. He no longer has accidents (or very infrequent). We no longer have to have issues about sitting on the toilet. He has stopped taking ALL medication. He has not had one migraine or vomited since last spring. (We still take his prophylactic drugs when he feels a headache coming on. But so far he has not had a full fledged migraine where he is on the floor vomiting and writhing in pain.) I no longer nag him about his diet. It takes about 30 minutes a day. He has adjusted so well. And if he wants to stop them, he can. But right now, he has never felt better! He does not seem traumatized at all. He chooses them rather than oral medication. I still feel weird about them but what are the options? They have been so healthy for our mental well being, as well as his physical one.

From nancy

We started enemas at age 3 with Owen. He was having many small soft but formed stools everyday and didn't seem to be able to sense when it was coming, and did not seem to have any voluntary bowel movements. He was always poopy it seemed. We went to New York for a consult with Dr. Pena on the way home from a visit with family in Boston. He convinced us that Owen would probably not have much success with voluntary bowel movements, and we ended up staying a week to learn the enema program. I found the enemas difficult to do at age 3. It was hard for him to sit on the potty for a long time and hard to entertain him there. It was well over an hour long process then, and I would dread it everyday. In addition, we had very little success with it. He seemed to leak more with the enemas than ever before and it was very messy loose stools. It was a nightmare and I decided we were better off before the enema program. We stuck to it for three weeks, then quit. I was relieved. Two years later, when Owen turned 5, we started enemas again. All of us were much more ready having exhausted every other attempt at "potty training" - metamucil, senokot, schedules, charts and diet changes. He was older, could understand his role, and entertained himself on the toilet. We were more willing to experiment with the enema protocol to find the right amount, concentration and frequency of enemas. After two weeks of trial and error, Owen was clean for the first time ever! It has been relatively smooth sailing since then. He has been 99.9% clean for over a year. Every IA kid has a different prognosis for bowel continence. Some never need enemas, but if they do, t is well worth the effort to do them. Life has been much more free and "normal" since we committed ourselves to regular enemas. As far as preschool goes, I found that at age 3-4, it didn't much matter. The other kids did not notice, and Owen didn't worry about it. He started preschool in pullups, and switched to a pad in regular boy's underwear. Look for a school that is comfortable dealing with the issue. Many are not. When he was almost 5, some of the older kids started to notice his smell if had poop. He started lying about it, and denying it. That was when I decided enemas were in order. It has everything to do with when you are ready, and feel that your son is ready. But you might want to begin investigating the process, and talk to doctor's who know about and support an enema program for IA kids. You'll need a doctor's support to get things going and troubleshoot with you along the way.

            Make sure your child understands that it might take a little experimenting to get it right...so he doesn't get discouraged. It took Owen about two weeks to find his workable program. There were some big accidents that required the use of a rug shampooer once and a hose on the patio another time during that first week! So you might want to stay close to home until the program seems to be going well. We quit swimming lessons for awhile too :) But it was WELL WORTH the time and effort. Things are SO much better now, and Owen is a carefree kid - at least when it comes to his underpants!!

Side Effects of Enemas

From Dr. Pena’s Office

Excerpts from The Philosophy Behind the Bowel Management Program at Schneider Children’s Hospital in PTN News Vol. 5, #2 Spring 1996

            The bowel management program has been implemented for only the last ten years. We have not seen any medical secondary effects that we could attribute to the use of enemas or colonic irrigations. However, we do not know what the consequence could be 20-30 years from now. It is important to remember that there are several kinds of enemas that can be administered. A Fleet enema is a phosphate enema and can be toxic when given in excess. Following the specific recommendations of the manufacturer, we have not seen problems or phosphorus intoxication nor hypoglycemia (low calcium). Many of our patients, on the other hand, receive colonic irrigations or enemas with saline solution which isn't different from the liquid that integrates throughout our body in terms of the concentration of electrolytes. We do not expect or foresee, therefore, any secondary effects from the use of these enemas.

            Many of our patients frequently express a common misconception. They think that giving enemas may interfere with nutrition and absorption of nutrients. It is very important for the parents and families to remember that when giving enemas we are only washing the colon and the colon only has stool in it, which is waste. The main absorption of nutrients occurs in the small bowel and our enemas do not wash that part of the intestine. We are really only washing out the waste.

From Ask the Experts by Dr. Pena in PTN News Vol. 6, #1, Feb. 1997

Answer:

            Enemas do not deprive patients of nutrients, vitamins or minerals. When we give an enema, we are only washing out stool, which is already waste material. Absorption of nutrients occurs in the small bowel, and there is only absorption of water in the colon. We have not seen problems with malnutrition in patients subjected to enemas.

            Dehydration after an enema only occurs if one uses an extremely hyperosmolar substance. For instance, if you put too much salt in the water of an enema. One teaspoon per liter, or even two, does not provoke dehydration in a patient. Giving plain water enemas would provoke the reverse effect, which would be the absorption of water into the body. The repetition of many plain water enemas could provoke something called water intoxication and the patient would feel very weak and may vomit. Enemas, in general, should not be given with pure water. Some patients seem to be particularly sensitive to fleet enemas, which contain phosphate. This can sometimes irritate the bowel, causing a hyperactive colon with diarrhea, and the patient passes liquid stools in between enemas. We do not know why some patients respond like this (it is very unusual), but if they do, we change to saline enemas and avoid fleets. We are not aware of any long term effects of enema programs.

Question from Parent:

            Like most other special kids, my daughter seems double cursed when she ends up sick with a flu, virus or cold since it throws off bowel management. Under what conditions would you suggest we do not follow the program? I've only not followed it when she has a fever, is throwing up, or has diarrhea (which happened only once in 3 years!).

Answer from Dr. Pena:

            We only stop the enemas for the treatment of fecal incontinence when patients have an episode of diarrhea for whatever reason. Under those circumstances I the enemas do not help the patient. The enemas must be suspended until the patient goes 24 hours without a bowel movement and at that point, the enema should be resumed.

Excerpted from Bowel Management for Children with Anorectal Malformations by Kathleen Guardino, RN, MSN in PTN News Vol. 5, #2 Spring 1996

The timing of when to give the enema may also play a role in how efficiently it cleans the bowel. We recommend giving it after the main meal of the day so as to take advantage of the gastrocolic reflex. The child should be encouraged to take their time when toileting. This could be time used for homework, special reading, or a favorite TV program.

We recommend using a Fleet enema because of the convenience of having the enema in a prepared vial. Some families find it easier and less expensive to administer saline enemas. Occasionally, children will complain of cramping with the Fleet enema but will have no complaints with the saline enema. If a daily Fleet (phosphate) enema is used, the parents should be instructed to give no more than one Fleet enema per day as hypo-calcemia could occur. Patients with impaired renal function should use Fleet enemas with caution.

Hypernatraemia

Hypernatraemia is elevated sodium concentration in the blood.

From Laxatives: Clinical Pharmacology and Rational Use by W. Grant Thompson
Drugs 19: 49-58 (1980)

As well as damaging the intestinal mucosa, the traditional soapsuds enema may deliver large amounts of potassium or sodium which may cause hypovolaemic shock and hyperkalaemia.

Leg Cramps

From Leg Cramp Puzzle by Kim Casola in PTN Newsletter Vol. 3, #4

A daily Fleet enema can cause an electrolyte imbalance which in turn can cause pain or cramping. Enemas can deplete the body of minerals such as potassium and magnesium. A multi-mineral supplement should fix the problem. Kim’s son’s leg cramps went away within 4 days after he had been suffering for years.

Dealing with Vomiting, Dizziness, and Passing Out

From Doris (Grammy to Nathan)

When giving the enemas, it doesn't matter what kind, but if you are instilling the solution TOO FAST, the body reacts. The solutions should be warm but not hot or cold. An enema is an invasion procedure and the body reacts violently if it is too hot, too cold or too fast. Instilling the solution slower may prevent the nausea, vomiting and passing out. I know everyone is in a hurry to get it done, but if you slow down, do not hold the bag too high, gravity makes it flow. Lower the bag or close the clamp part way to regulate the flow. When the child complains of the cramps, shut if off or slow it down until the cramps subside. Then restart the enema, leave the tube in when ;you shut it off, raise the bag or release the clamp and slowly instill the rest of the fluid. A few more minutes instilling the enema will save you the time you spend with the side effects of instilling it too fast. It is usually helpful to have the child or person lay on their left side.

From Christine (Mom to Michael)

Michael has on occasion vomited profusely after an enema, and I realized it was from the solution being instilled too rapidly. I had immediately called the surgeon afterwards, and he had explained to me that if the vomit wasn't green or red there was nothing to worry about as far as the vomiting is concerned and it may have been the solution being given too rapidly.

From Marg

My son this past summer got cramps while walking along a beach - lay down on his stomach & briefly passed out. The paramedics informed me that this was caused by stimulation of the vagus nerves. This has happened a few times after enemas. What I used to do - if he had a dizzy sensation while on the toilet is put a towel on the floor & have him lie down until the sensation passed & he was ready to sit again. Many times this helped him avoid actually passing out. Occasionally there was a bit of mess (sometimes lots) on the floor. Often the pressure of the stomach against the floor helped to get gas out & he'd immediately feel much better.

From Laura (Mom to Brandon)

His potty chair cup was 3/4 of the way full. He had severe cramps, vomiting, and complained of being dizzy. He also began shaking like he was cold and his pupils were very dilated. My husband had to hold Brandon's head up while he sat on the potty chair because he acted like he was trying to pass out. When I took him off to clean him up and put his pull-up on, he acted like he had been asleep. He asked what had happened to him. I have found that if I use too much glycerin, give the solution too fast, or if he is impacted, it will cause the cramping, nausea, vomiting, etc. Make sure that you give the solution very slowly.

From Babette (Mom to Michael, HD, 3yrs

This is how Michael reacts with enemas. Some kinds of enemas are much worse for him--Fleets especially. We've tried the whole gamut of recipes, to no avail. We've also tried different methods of administering the enema. He always reacts in the same way, to one degree or another. Yes, it's terribly scary!!! Could it be possible that not all children can do well on an enema regimen? (Regardless of the parents attitude/feelings about the process.) Michael has a cecostomy tube, again, and is doing remarkably well. For some reason when we give him the SAME SOLUTION from the top of the colon, we get good results without the severe cramping, vomiting, turning whitish green and passing out!

Cramps

From Dee

We use a baby anti-gas oral medication about 30 minutes prior to enema time to reduce cramping.

Dry Skin

From Karen B. (Head of PTN, mom to Sammy)

Sammy gets very bad dry skin, especially when the seasons are changing. Her skin gets very chapped and red on her legs and arms, and she scratches which makes it worse. We also find that the tops of her legs and knees get very bad, and we finally figured out that it was from the saline solution from her enemas. We do them with her lying down on a "chuck" on her stomach, with her butt elevated. When the excess fluid comes out, it drips down to her thighs and the salt solution definitely makes the dry skin worse. Our pediatrician recommended just gooping her up with Aquaphor. We also use Eucerin cream, which works well. You just have to remember to put it on every day!

Note: Kiss My Face -- Honey and Calendula extra dry skin lotion was recommended by another PTL member

 

Psychological Effects of Enemas

From Bonnie M. (Mom to Amy, 8 years old, VATER/TC, Allergic to Latex)

I've never felt that Amy considers having her enemas as "traumatic". Part of this is that she was part of the decision making process to start doing them. Amy was five and was so tired of poopy pants and the rash that goes along with that. But I also think that it is because doing her enemas are as much a part of her daily routine as getting a bath, brushing her teeth, etc. There are days that she would just as soon not fool with doing it - just the same as she doesn't want to stop playing to get her bath, or have to make her bed or take her plate to the kitchen after dinner. That's part of being 8 years old. But we do try to make the time spent on the potty as pleasant as possible. We still use a potty and we do it in her bedroom so that she can watch TV or color using a lap tray. I've looked into getting a portable toilet for when she out grows the potty so that we can still do it in her room. She does help me get everything ready - and takes a running start to jump on the bed to lay down to get the catheter in. The only time I let her do that!! Don't underestimate the power that the parent's attitude has over the situation, either. You can't be feeling sorry for what you "have to do to" them as if you are some bad guy and the child is a victim. You're not the bad guy when you make them brush and bathe. It's just something we and they have to do.

From Dee

Does my son, the veteran enema recipient (age 9) enjoy his enema? Of course not, it interferes with his life. Is he "traumatized" by the enemas? I hope not, doesn't seem to be. You know, his attitude is a DIRECT reflection of my attitude. I never "wring my hands" and fret over it, I don't think it is weird and neither does he. This is a medical procedure to us and that is ALL that it is. Sure we worry about his medical problems. But then we live our lives and I have yet to meet another human that lives a fuller life than my kid.

From: Dan (born IA, age 34)

I didn't see this original message but when nancy quoted it I felt obliged to reply to the original sender.. whoever it is.

> >Doing enemas to my son is so upsetting to me. I always think, how could I continue doing this, > >hurting him, and psychologically maiming him. How would he understand that I love him and I >>want the best when I always have to cause pain?

1. I've had enemas done to me [for similar reasons as your child has] and I'd strongly object to the term "psychologically maiming".

2. Plenty of parenting is "causing pain". Diabetic children require their needles. Not getting a child everything it points at in the toy store is "causing pain". Disciplining a child is "causing pain". Everyone comes to understand cause and effect. as well as underlying reasons for pain.

3. A lot of grief seems to be spent on the subject of "oh, my poor child... his/her life is harder and more painful because his/her anatomy was different when s/he was born and s/he had to have all those surgeries.. and it's harder for him/her to crap [compared to "normal" kids]." I guess the part of that that I have a problem with is the word "compared". You can say that your child's life is harder or more painful compared to yours.. compared to someone else’s... but that's your comparison, not theirs. Sure, in plain fact, the kids are having a tougher time of it because of surgeries and more time spent in the bathroom... but people, as we all know, are not going around talking [much] about their crapping habits, or their time in the bathroom. What I'm getting at here is.. the only way the children are going to feel "gypped" or "ripped-off" by life is if their differences are held up to the light as an injustice, and not a challenge. If I said to a woman... "What is it like, you poor thing, going through life without a penis?"... once she was done smacking me...[ :) ], she might stop and think... she has no basis for comparison. Having never been built that way, she can honestly say she doesn't miss it... unless it's etched into her head [by someone else] that she's inferior because of it. Someone did ask me once.... to paraphrase... "Dan.. you've been through what my kid is going through.. and you have the same.... [reconstructed] parts... what does it feel like?" and I replied..."compared to what?" The kids' expectations of life are zero. They don't know unless told how much harder it is for them. I advocate being honest about their differences but accentuating them as challenges and not handicaps.

From Jane (mom of Tyler, 6 yrs., HIA,)

It is hard as a parent to do anything to our children that is painful, sometimes even telling them 'no' at the store can break our heart along with theirs. But I don't know if that can be 'compared' to the pain of enemas or needles. It's a physical pain, that parents never want to inflict on their kids, along with possible emotional pain. I'm sure parents of diabetics go through the same thing. We will do what is needed to keep them well because we love our children but that doesn't mean we like it or will not worry about what it is doing to them. Yes, pain is a part of every life, something we all have to deal with. Unfortunately, some get more then their share or a different type of pain to handle. I remember that terrible 'causing pain' feeling all too well. At times, I think it hurt me more then Ty, but we did what we had to do because we loved him and knew it needed to be done. He did fine because of it was done in a loving and very caring way. I will do whatever I have to do to give Ty or Alli a happy healthy life, but I will find the easiest, fastest, and the least painful way of doing. I just know whatever we are doing and after all we had to do in the past, he's doing fine, physically and emotionally, but completely understand these parents legitimate concerns about causing their children pain. This is a normal part of being a PARENT. We all feel the pain and carry the burdens of our babies and want only the best for them. When they are in pain, we are in pain. Parents are aloud to have occasional 'pity parties' for themselves and their children and the best place to do it is right here on the PTN, to get the support of parents that understand their feelings and struggles. If we can't share our fears and concerns with others going through what we are, then who can we turn too. Our kids have harder and more painful lives then most. Ty is 6 and has compared himself to others, and knows his life is different and more difficult then his friends. These kids do have it tougher because they are in the bathroom for enemas or missing out because they are having surgeries, doing things their own siblings do not do. That can be tough for all to handle. But another comparison that can be made on the other side, their life is a piece of cake compared to some others. Walk down the hall of a hospital and you can see how lucky you are. Not to minimize the pain and struggles Ty has faced and overcome, but I'm so thankful that his problems have been so "minor". Do I wish Ty never had to suffer one day? You bet but I think the differences and struggles he's faced 'compared' to others, has made him a stronger and better kid. One thing we decided so to have one less burden, was we were not going to hide Ty's defect. We would not live behind some secret or hide his troubles and we let him 'compare' his life with others so he could learn and they can too. He can and will be who he is, defect and all, and I wouldn't have it any other way. He shouldn't be embarrassed or ashamed and he isn't. If you give your kids all the love and support they need, no challenge will be too tough for them to handle. Center on all the positives and not the negatives. We have always been honest with Ty (and everyone else) No secrets here. We felt it would be a burden on all of us to hide his defect. Because of this, his defect is a challenge, not a handicap.:

From nancy

Our kids are amazingly perceptive. They know we love them in spite of the pain we "cause". I think it has something to do with their primitive understanding of intent. The things we must do are sometimes painful but we don't intend to cause pain - it is an unfortunate side effect of what we must do to give them life and health. They do know that somehow, and count on us to be the strong ones. I resisted giving Owen enemas for the longest time. When we finally decided to make them a regular part of our routine...I knew I had to be consistent. From the very beginning, I was always very firm and matter-of-fact about enemas. I gave him no room to argue about it. There were times when I had to really insist even when he was fighting it. I tried to talk as little as possible, but refused to stop the routine. I remember one night, I was just so tired and I didn't want to fight with him. I just sat down and said "Fine, Owen you let me know when you're ready so we can get this done." He was shocked, and answered, "Mom you're supposed to MAKE me do this part!" That's when I realized how much he was counting on me to be the strong one. He knew he had to do it, but just couldn't bring himself to submit willingly yet. It amazed me. He always knew that I didn't like it much either we were both stuck with it if we wanted him to stay clean. I think it showed him how much I loved him that I would keep doing this day after day even when I didn't feel like it. It seems unfair our kids have such hard lessons to learn, but when they learn them well what amazing and wonderful human beings they become!! There were people who suggested that I separate myself from Owen during painful procedures at the hospital so that he would not associate his mother with pain. I never agreed with that. I was always right there, and encouraged him to look right in my eyes during the most painful parts. It helped him to concentrate, and I wanted him to see that I loved him. hat it hurt me too that we were in this together. And it worked it is a strategy he still uses. Your son gets his cues from you. If you show him that you think you are horrible because of the pain you must put him through he will be confused about your love. But if you show him that this pain is part of the process that will one day improve his life and you are here to help him through it he will love you all the more.

Children Giving Enemas to their Dolls

From Karen B. (Mom to Sammy)

Sammy often "gives" her animals and dolls enemas. We always thought it was a healthy thing - it was never done in anger, just playing, and it happened to be the animals turn! I wouldn't worry about it at all. You don't want the kid to think it upsets you - then you open up a whole other can of worms. Sammy and I were in the supermarket, and I grabbed a container of salt for her enemas, and she announced, oh, is that more salt for my enemas? I was slightly mortified that anyone overheard, but again, I don't want her to think there is anything wrong or bad about it. It is a major part of her life, and will be, and she needs a healthy attitude about it. In terms of others getting the wrong idea, I think that anyone who matters will know the truth, and those that just happen to overhear something, it's none of their business. I'm not worried about someone getting the wrong idea and accusing us of anything horrible - it is obvious that it is a medical necessity. The same thing goes with wearing a pullup to school. There is the issue of privacy and covering it up so no one else sees it, but then what message does that send to her? That she should be ashamed of having to wear a pullup? On the other hand, it is no one's business, but I don't want to make

her feel uncomfortable about it.

From Bonnie M. (Mom to Amy, 9 years old)

Amy had to be catheterized when she was 3 - following the surgery to release her tethered spinal cord. She fought us about doing it until she (on her own) decided one morning to do her doll first. She went through the steps with her "baby" and surprised me by being so accurate about what to do and how close she was to me in what she said. After that she got herself on the bed, laid down and never fought us about it again. I always felt that was her way of "working through" having to do it. It is my understanding that children use play to help them put reality in its proper perspective.

From DM (Mom of Ian 8.5, HIA)

Healthy kids use play to work out things that are going on in their lives, good and bad. The fact that they depict their enemas and catheterizations using dolls is normal. They also need to see our reaction, for validation that their experiences and feelings are normal. Similar to Ian's last surgery where he got to decorate a "blank" doll patient (he colored it like himself and his clothes--his own choice) and be the doctor and "perform" the surgery himself in the pre-op clinic, these kids are taking control of a situation they usually are on the receiving end of in real life. This is a good time for parents to help with dolls and doll-sized "supplies", and let the child be the one doing the procedures. Parents can see how the doll (& child) feels about the treatments, what he likes/doesn't like, and what could change for the better. It's a good forum for discussing privacy and the reaction of other dolls when they find out that the patient doll is different or has different health regimes. We've always encouraged Ian to show/tell us what he's feeling or what he's experiencing, and sometimes it's play like this that will let the child express things that they have found too sensitive to bring up before, especially younger kids. We also found that Ian became more comfortable with the entire situation, and learned his own and our comfort level with what would be discussed outside the home, and what shouldn't. I can understand why some would feel uncomfortable seeing kids copying these treatments on their toys. It shows what they're "going through", and that it's on their minds. But as long as they are showing empathy and care with their toys, we can feel pretty sure that they are learning and perceiving the same things in the treatments we parents give. I don't think parents should worry about outside agencies or teachers seeing this play and jumping to conclusions. Once worked through at home, many kids won't continue this play outside. If they did continue, the issues could be cleared up easily by the teacher talking to the parents.

Reducing Child’s Anxiety

From Laurie

As an educator I can assure you that most 3 years olds want to take control over as much as possible in their lives. As a Mom who has "cathed" a child for many years I can suggest the following. Empower Emily as much as possible with all the fixings for the procedure...hand washing, laying out supplies, opening tubes, withdrawing the tube when you say it is time. With Emily's assistance, make a chart, buy beautiful reward stickers and together decide on a suitable reward for compliant behavior over a relatively short period of time. Be very clear regarding your expectations for her behavior....no fighting, no hitting, no grabbing your hands. Screaming, in and of itself, is really a survivable problem. (Many 3 year olds do learn that a complaint of pain does get Mom's attention. Ariel referred to anything she merely didn't like as "painful") Be aware that girls as young as 4 have learned to self- cath (albeit rarely) and once that learning takes place you are home free!

From Mindy (Mom to Zach)

I gave Zack enemas a few days in a row a while back and even though he freaked out the first two times, by the third time he just whimpered and laid down in position. He pointed to his butt and said, " Make Poopies!!" He knew what I was doing and was upset but not as terrified as the first few times. He went about two months without any enemas and then when I had to give him one again he freaked out when he saw me preparing it. I think he was very scared and didn't remember exactly what I was doing. The point is, it was easier after he knew what I was doing and why I was doing it. He really got used to it and was not as terrified. (I use saline enemas when necessary because the fleets really hurt his stomach.)

From Muriel

When I was 6 yrs. old, my mom gave me rectal enema's and yes, I was traumatized by them. Not by the procedure itself, but because I had absolutely no control over the whole situation. It was my mom who stuck the tube in my ass, and I was the one with all the pain, lying in my own soil. I felt powerless at that time, and that really frustrated me. Now I've reached the age where I can do my own enema's and that feels great! I'm the one keeping myself clean all day which is great for my self-confidence! Having the feeling I had a say in the process would have helped. I was in total denial of what was wrong with me so maybe that was of influence too. Involving the child as much as you can, finding ways that he/she can do the enema's themselves can reduce the feeling of being totally powerless for your child and might help to them accept the routine. When I read about the enema routines here in the group, children having to lie down on their knees, so they can't see what is going on, in the bathtub... it brings back all the bad memories.

From David

I personally didn't know about enemas until I was ten, At this time my overly protective father administered them to me daily for (I think) at least a year. Then at my surgeons urging I started doing them myself. The independence of this is extremely important. I feel that it was a disservice (understandable though) for my parent to have opted to be an active role in my bowel management procedure at such a developed age.

Administering Enemas

Please read the SIDE EFFECTS OF ENEMAS section. It has tips for avoiding many problems.

Positions

Excerpted from Bowel Management for Children with Anorectal Malformations by Kathleen Guardino, RN, MSN in PTN News Vol. 5, #2 Spring 1996

The position of the child is important in determining the efficiency of the enema. The child should be in a position that would facilitate delivery of the fluid as high up into the colon as possible. If this is a small child, this can be done by placing the child on the parent's lap with the head down and the buttocks on the lap. The older child may lie on a bed with his/her buttocks on the bed with the head down towards the floor. Another position for the older child or adolescent is in a knee-chest position with the buttocks in the air. Adolescents who are trying to achieve independence with the self administration of these enemas may also try the knee-chest position while lying on their sides. The enema fluid should be retained as long as possible.

From Nancy

If you have someone to help you, try and get them to blow bubbles with her. Not only is this a fun distraction, but if she is blowing out - she can't bear down.

From Shannon (mother of Nate, 15 months, IA)

I lay him on his back, push his legs back to his chest (bending at the waist) and then hold him (leaning over his legs) with my left arm while maneuvering the catheter with my right. It's the same position as for dilation except you're at a different angle. I would sit next to his side as opposed to being down by his feet. In this position, he can't kick or turn over. Nate loves to look through books so I'm hoping that a book can keep him content long enough for me to do this.

From Elizabeth (Mom to Noah)

I have never had to catheterize my son, but I have had to dilate him, and also insert nasogastric feeding tubes. It was very difficult, we did the dilations when he was around 9 months thru to 15 months, and recently did the dilations for about four months, and the feeding tubes as well. I was having a monster of a time with him, and a nurse came out and showed me how to wrap him so it would be easier to manage him solo. The way that you do it is kind of like a papoose, or like you did when you swaddled your baby as a newborn. You lay the sheet or large blanket on the ground, diamond style, and fold down the area where kiddo's head will be, then place kiddo on the blanket/sheet, then take one corner and go over the arm then under the back, with the other corner, tuck her arm down, almost behind her hip and wrap the other corner over and under her back. I then sit straddling my son, and I am able to put my legs over his if he fights terribly. It seems harsh, but it actually is like someone is holding them, other than actually manhandling them. The fear and the uncomfortable nature of what you have to do is often worse than any pain that may be inflicted. Given the opportunity, my son has preferred to be "wrapped" rather than held down by someone other than me. I hope this helps. I hope it doesn't sound too cruel or barbaric.

Bonnie M. (mom to Amy- 7 years old - VATER)

Sit on the bathroom floor - on a towel. Put Nate on his stomach across your left leg and put your left arm across his back to hold him still. Have the potty near you - hopefully you have enough room to sit with your legs apart and the potty between them. Administer the enema with your right hand and hold his "cheeks" together for the time required. Then you should be able to flip him up on the potty rather quickly. By putting him across your leg you should have his bottom elevated enough to help with the enema and still give you enough leverage to help keep him still.

            We always did Amy's enemas with her sitting up - once the catheter was inserted. We started out with a foley catheter, but then "moved up" to a bowel maintenance catheter. It can be inflated up to 100ml so that it more securely seals the rectum to help prevent leakage. When the time is up - just deflate the balloon and well, you can figure it out from here.

From Karen B.(mom to Sammy, 3 1/2, cloaca, etc.)

We have Sammy lying on the floor, stomach down, with a rolled up towel under her pelvis to keep her butt elevated. We put a chuck over that, and she lies with her head on a towel and watches videos. She is pretty small, though, so I don't know if that would work for you.

From Nancy

He stays on a plastic covered foam rubber exercise mat covered with a towel and a disposable bed liner.

From Marti

I can't help wondering if the eye drop position I recommend might work for enemas (in reverse). For eye drops or any facial treatments a parent has to do to a wiggly child, I recommend that the child lay flat on the floor on their back, the parent sits between their spread legs with their legs extended out straight and covering the child's outspread arms.(Facing each other). Essentially the parent's outstretched legs lie across the child's outstretched arms and legs and contain them fairly well. Maybe someone can try this- what if you put the child's head at the parent's crotch, with parent's legs covering arms and legs, and then the parent would have to lean over their body to insert the enema (I may not be that limber myself). At least they'd be aiming the right way if they release too soon. The whole idea of having to restrain our children and do things that are uncomfortable is hard to deal with... I don't envy any of you .

Solutions

Note: some people who use water as part of their solutions prefer to use boiled water and others use spring water. Those who use spring water do so because it doesn’t have fluoride, rust, chlorine or other additives.

Deciding Which Solution to Use

From Karen B.(mom to Sammy, 3 1/2, cloaca, etc.)

For some kids, the low enemas just don't do anything. Some of us also can't use Fleets because of our kids kidney issues, so we have to use a milder enema such as saline. Fleets have an active ingredient (phosphate), which helps the colon to contract, causing the poop to be expelled. Since the saline doesn't have an active ingredient, you have to be more aggressive (high volume and placement) in getting it up there to break up the poop and wash it out. If you are able to use Fleets, and the return is good, there is no reason to use a high colonic enema. The Fleet enemas are dangerous to kidneys that are bad to begin with. For those kids with two kidneys functioning normally, there is no danger from the phosphate itself. For those with compromised kidney function, they are not able to process the excess phosphate, so it becomes toxic to them and can deteriorate the kidney function further. The castile soap enemas are mild and from what I understand, not dangerous to kidneys.

From Mindy

I am doing saline enemas because the fleet enemas really bother him--cramping and gas.

From Anne (Mom to Ben)

Why Milk & Molasses? Both Ben's pediatrician and his GI doc recommend them over Fleets which contain phosphates. I know that there are some on this list who have posted that Fleets are only a concern if there is already an existing kidney impairment. Ben's doctor said that Fleets would definitely be contraindicated in that case, but she also feels that there is still a risk with repeated use of kidney involvement or for seizures. Therefore, her philosophy is to avoid them as long as there is something else that works just as well. Just a different school of thought, I guess. It sounds reasonable to me--my child already has enough problems, why do I want to risk more if there is something that is just as effective, even if the risk is small? I have used Fleets on occasion, as well as tried saline. The milk & molasses were much more effective for Ben than the saline; about the same as the Fleets. Ben prefers the m&m's over the fleets because he says that there is less cramping and less burning. Can't beat the Fleets for convenience, though -- or at least that was the case for us until Ben developed a latex allergy--fleets have a latex reflux valve in the tip, so they are out of the question now anyway

Amount of Solution

Excerpted from Bowel Management for Children with Anorectal Malformations by Kathleen Guardino, RN, MSN in PTN News Vol. 5, #2 Spring 1996

Once the routine of emptying the colon at a certain time with an enema is established (anywhere from 6 months to 2 years), then one may be able to decrease the fluid in the enema. Suppositories may be sufficient to stimulate a bowel movement once the child has been on a program of enemas for some time.

I don’t remember who this was from, sorry!

It was explained to us that the water has to penetrate most of the stool for it to be cleaned out. If your using too little enema solution, it may not be getting to all of it. You will know if the child is too full, some of the solution won't go in. Another indication of not enough fluid is when the enema just loosens up the poop and the child keeps pooping all day. Increasing the amount of fluid as the child grows is necessary. Seasonal changes in diet can also have an impact (more fresh fruit in the summer, for example) or just being home during holidays (more snacking possibly). Your routine might change often.

Bonnie M. (mom to Amy- 7 years old - VATER)

My impression from our visit with Dr. Pena is that the only way to determine if you are using the correct form of enema solution and the correct quantity would be to do an abdominal x-ray as soon as possible following the enema (no longer than an hour or so after). Dr. Pena did that with us the first day he met with us to check that our enema routine was completely cleaning Amy's colon. But we had managed to achieve the correct amount simply by trial and error.

From Nova

I think you need enough volume to completely fill the large intestine for high enemas. When our child was 3 yrs, we started with 300cc, or 10 ounces. At 4 yrs, we needed 350 cc.

How Long to Leave the Solution In

Some children need 5 min., some 10, and others as long as 20-30 min. Specific examples are given below.

Water Enemas

From Marti

Water usually goes to salt. Tap water enemas would cause more water to go into the bloodstream and would thus dilute the amount of sodium. Increased urination indicates that your kidneys are handling the increased water in your vascular system. (Pulled in there by the "saltier", although normal or isotonic blood). I am of the opinion that there is a large variance of what our bodies can handle in terms of electrolyte imbalance, and the key to enemas is to be sure that you get back all that you put in (hopefully with some stool). Note: too much water without salt can cause water intoxication.

Saline (Salt and Water) Enemas Note: It is possible for the body to absorb the salt water through the intestine. If too much salt is in the water, it could lead to too much salt in the blood a condition called hypernatremia. In severe cases, this could lead to death. Always measure the amount of salt you use and make sure anyone else who might give an enema to your child also knows the exact amount to use and the dangers of using too much.

From Bonnie M. (Mom to Amy - VATER - 7 years old)

If you are adding salt to water to make a saline for the enemas then you are doing what is necessary to prevent water intoxication. That is the point for adding the salt.

From Marti

In order for any enema solution to work well, it has to have extra salts in it to pull water into the bowel to stimulate the "push". Normal saline is what is equivalent to the salt/water ratio in our bodies. .It is made by using approximately 1 tsp. of salt to 500 cc of water. Most enemas need to be stronger than that to work,, thus making it important to monitor more carefully. We have had patients using 2 tsp. of salt per 500 cc, but I would not globally recommend that since other factors must be considered- renal function, amount of dilated, dysfunctional bowel, and what kind of return the patient usually gets. My bottom line is:

1. KNOW how much salt you use, don't just pour it in arbitrarily

2. Watch to be sure you get back what you put in and that the child is not retaining the fluid. If the child retains the hypertonic solution, it will be absorbed and alter their electrolytes

3. Limit use of Fleets enemas (Dr. Pena et al say no more than one pediatric fleets per day)

From Nova

Got a call back from Kathy of Pena's office regarding the saline issue and how much is too much etc., etc. Kathie G's comments were very similar to Marti's. She said that 1 teaspoon per 500ml was approximately equivalent to the body's own saline concentration. This, by itself, may not offer enough irritant to the intestines to flush out the bowel. That is why we were prescribed to use 1-1/2 teaspoons per 500ml. Just a little higher salt than what the body considers "normal" helps to stimulate the intestines to flush.

From another post:

Pena treats each case individually. One protocol won't work for everyone. I know one patient of his that uses regular saline (1tsp salt : 500cc). I know of other Pena patients who need to use 3 tsp. salt : 500cc water! We are right in the middle with 2 tsp. salt : 500 cc. Increasing salt content should be done only under the advisement of a medical professional - too much salt can be lethal. A lot of "Pena" patients have good advice because they've had good success. But, keep in mind that much of the success is due to the fact that his protocol for them is tailored specifically for them and may not be universally applicable.

From Karen B. (mom to Sammy, almost 4, cloaca, etc.)

From all of our dealings with Dr Pena and Kathie, they have said 1-2 teaspoons of salt per liter of water should be the max. Start with one, and if results aren't as good, increase up to 2 teaspoons, but no more. We had been using 1 teaspoon for a long time, but have started to increase the amount because the returns weren't as good. We also used an empty fleet bottle. It works well, but if you use it for a long time, it starts to crack and break. Since we do the enemas every day, we changed to a thick plastic bulb syringe and a 24fr catheter. We use a heaping teaspoon per 24 ounces of water, and we do the whole procedure twice. Sammy is about 28lbs. Scott puts the saline in, and then waits a few minutes and then flips her onto the potty. He lets her sit about10-20 minutes, and then goes ahead with round two. She usually sits longer on round two about 30 min.- mostly because of wanting to watch her movies - sometimes she will poop in her diaper afterwards as well, or have some water come out, usually within a half hour. We also find that if she takes a bath right after, she will let some poop loose in there too. And then the bath is over! We use a catheter and insert it at least 6 inches in. This gets the saline above the poop, and helps it break up easier. The double enema also makes sure that everything is out. Sometimes Scott will even do a third if he feels she hasn't gotten it all out. We do skip a night once a week to give her (and Scott!) a break. So sometimes on Saturday that third one is necessary. Saline enemas can be repeated as much as needed, and won't cause any harm..

From Duana

cc's are cubic centimeters, and for liquid measure are the same as

milliliters (mls). There are 1000 cc's or mls in 1 liter.

 

30 cc's = 1 ounce

 

250 cc's = 1 cup approximately

 

240 cc's = 8 ounces  So, a cup can be roughly thought of as 8 ounces.

 

1 US pint (liquid measure equivalent) = 473.2 cc's

                  = 2 cups approximately

                  = 16 ounces approximately

 

1 US quart (liquid " ") = 946.3 cc's

           = 4 cups approximately

           = 32 ounces approximately

 

1 US gallon (liquid " ") = 3785 cc's, or 3.785 liters

 

Just for interest sake, 1 US teaspoon = 5 mls (or cc's), and 1 US tablespoon = 15 mls (or cc's).

 

 

So, an enema recipe using 1-2 teaspoons of salt per quart of water would

equal:

 

If using the 1 teaspoon option, it would be

 

Salt:         Water:     Cups  cc's =(roughly) Ounces

 

1 teaspoon       1 quart     4  946.3= 1000 cc  32

or....

1/2 teaspoon      1 pint      2  473.2= 500 cc  16

or....

1/4 teaspoon      1/2 pint     1  236.6= 250 cc   8

 

If using the 2 teaspoon option, it would be

 

2 teaspoons      1 quart     4  946.3= 1000 cc  32

or....

1 teaspoon       1 pint      2  473.2= 500 cc  16

or....

1/2 teaspoon      1/2 pint     1  236.6= 250 cc   8

Bonnie M. (mom to Amy- 7 years old - VATER)

As to the quantity - with a saline enema we use 700 ml for Amy. She weighs about 45 pounds. Amy's colon is very short and that may account for the amount that works for us.

From Lori (mom of Karly 4 1/2)

The recipe calls for 1-2 tsp. of salt per liter (1000cc). We use approx. 3/4 t and 500 cc of water for Karly who is 4 and weighs 34 lbs

Andy (father to Andrea, 6 mos., lia)

For Andrea we do 1/2 tsp. salt to 8 oz. water. Andrea's BM’s were green, toothpaste consistency, several times a day, before we started bedtime enemas. Now she is clean for 24 hours at a time. Expect the enema to take between 30 minutes to 1 hour to work completely. There will be 2-3, maybe more, BM’s, during this time, and there is some discomfort. But, you will be amazed at how much better your child will feel the rest of the night and the next day!

Fleets/Phosphate Enemas

From Cheryl (mom to Scott, 4 1/4, high ia)

He gets about 300cc of saline & fleet (about 60cc). We keep it in for about 10min.

Catherine (Mom to Zachary 6, IA))

I used 1/2 adult size bottle of fleet enema solution and fill the bottle the rest of the way with warm tap water. My son is about 44 lbs. He lays on the floor and I insert the tip of the bottle about 1/2 inch and squirt in the solution, 1/2 bottle at a time. He stays there for 5 minutes and then sits on the potty until he empties out. Sometimes he comes back later and empties out some more. We do this every day or every other day and he stays clean in between.

From Marti

I'm planning to present a poster at the Pediatric Surgical Nurses Association conference in May- the poster will be on enema solutions. None of us really know that much about it. I am presenting this poster in an attempt to illuminate what we are all recommending across the country for enema solutions, and plan to include the case reports of adverse events from the literature. I found a few articles about Fleets problems with one case per article. The main problem, whether the child has kidney problems or not, is that a child was given a Fleets, with lots of hypertonic sodium, phosphate, etc. and they did not put it back out (which means that their body is absorbing all of those salts in an attempt to equalize things). What they did when the child did not expel the Fleets was to give another, and another, thinking that this would clear the "obstruction". After reading the reports about adverse events with Fleets, I was a little nervous to recommend it. I do so now with the additional advice to parents that they should only use 65cc (Pediatric dose) and if they don't get it back, they should not give more, they should call me or come in. I suspect some children handle adult dose Fleets without any problems, but I assume that they put it back out fairly quickly after giving it.

When I reviewed the literature, there were far more reports of severe problems with fleets than anything else. Some of our patients still use it on occasion, but we urge them to try not to use it routinely.

Soap Enemas

From Marti

Soapsuds enemas have been used for decades. I think the soap helps to break down the stool. We use salt/water (usually 1 level measured tsp. salt to 16 oz tap water) with a teaspoon of soap- if the child has trouble with the dish soap at home (usual complaint is vomiting or tasting the soap**), we recommend Castile soap (in liquid form) which is the mildest but usually needs to be obtained at the health food store. So far none of our kids have had problems with the castile. For the kids who don't "put out" the same amount of stool regularly, e.g. the parent notices that the output is decreasing in volume, we add a pedi fleets once or twice a week. (What I'm describing are our cecostomy solutions- the same as an enema except from above).

**I am always one to believe parents, and many of mine have told me that the child threw up with the soap and they could smell it, some of the kids say they can taste the soap in their mouths. So, even though we cannot fathom how soap could get from the cecum (and in your case the anus) to the stomach, we have to believe the reports. I don't think the soap is absorbed into the bloodstream, causing the kidneys process it, but then how in the world do they taste it?

Milk and Molasses Enemas

From Anne (Mom to Ben, 8yrs, HD)

Here is the recipe I use for Milk & Molasses enemas:

 2 oz milk

 2 oz molasses

Warm up molasses in microwave so that the consistency is more liquid. Let cool down if you get it too hot. Add the milk and stir. I have also used powdered (instant) milk, mixed with warm water to warm up rather than use the microwave. With the microwave you can get it too hot. The instant milk seems to work the same as regular milk and my son's doctor said that didn't make any difference if it was whole milk, skim milk, 2%, etc. It DOES make a difference that it is molasses that is used, and not something like Karo Syrup. I recently started using an irrigation bag w/ cath --rather than an enema bottle -- and the flow seems to work better with a larger volume. I have experimented both with doubling the recipe as well as just diluting with tap water. Both seem to work about the same but I prefer diluting w/ tap. Let me know if you have any questions. We have been doing "M&M's" for about 2 years now. They seem to work much more effectively for Ben than other options we have tried.

 

I use milk & molasses enemas -- 1:1 ratio of milk & molasses. Started out using 3 oz each, but have increased & found it to be more effective.

Sue (mom to Emily, 3.5)

We give Emily milk and molasses enemas (3 oz milk to 3 oz molasses - any type, heated until the molasses combines into the milk). When I asked her gi why do that particular combination, he said that it works well and you don't have to worry about salt overdosing and so on... apparently it is an extremely safe enema.

Glycerin Enemas

From Laura H.

We've tried glycerin but didn’t like it. We had problems with glycerin causing cramping and severe headaches, so we rarely use it. Because of the child with severe headaches with glycerin, I do wonder about its absorption. I think glycerine just greases things up.

From Anne (Mom to Ben, 8yrs, HD)

I have added glycerine to the saline enemas before & had less complaints about discomfort.

From Mary R. (Mom to Rich, 10, HIA, 62lbs)

Rich uses 3 C. lukewarm water with a tsp. of salt and 2tsp. of liquid glycerine

From a later post 7’00:

We use 1 TEASPOON salt in 3&1/2 C. lukewarm water and 3 TEASPOONS of glycerine. Rich is about 65 lbs. and does his enema rectally. The salt acts as an irritant and the glycerine helps things to slide out. Our nurse suggested, if the enema doesn't clean him out completely....more comes out later...then give a "chaser" enema of just the salt and water 10 minutes after the first. That works great for Rich but we only do the chaser if it seems like he needs it.

From Jane (mom of Tyler, 6 yrs., HIA, cecostomy)

Glycerin is what works for Ty. We now use it regularly in his daily flushes. Without it, he doesn’t cleanout. The Pharmacy might have little individual packets you can try, or we were using the small bottles of glycerin from Walmart till we found the packets again.

Golytely Enemas

From Marti

Our latest trial is GoLytely which has worked well in one child, but I can't find much literature on chronic usage.

Techniques

Getting the Child to Cooperate

1) We try to make it a time for her to choose what she wants to do

2) We set up a TV in her room, and she usually will pick a video to watch during the enema.

3) Playing cards w/ mom during the “sit” time

4) Giving the child as much control/responsibility as age and maturity allows

5) I bought a portable toilet so I could do my daughter’s enema in her room where she could watch tv, play Nintendo, etc. while she is sitting

6) He is mostly cooperative as long as his twin isn't doing something fun!

7) We have a cushy tushie seat, a foot stool (booster seat for his feet) and a TV tray

8) Picking a game like a gameboy game or other cheap hand held game that can only be played with while on the toilet.

9). Timers...they kill the "Maaaaa can I get up yet?" but keep the timer where you can see it in case your child's a bit sneaky like mine and wants to "help the timer out" a little bit. :)

10) Use a “lap desk” - it is a desk top with a pillow attached under it so it can rest on his lap. He colors, draws, reads or plays with small toys on it.

11) I always make sure he has a glass of water within reach

From nancy

Owen sits on the toilet in the bathroom, but I attach a special kid's seat on it - so that he doesn't have to balance himself on the adult-sized toilet for a 1/2 hour! He has a stool to put his feet up on so they aren't dangling (also - having his knees higher helps him to empty his bowels). Last Christmas we bought him a "lap desk" - it is a desk top with a pillow attached under it so it can rest on his lap. He colors, draws, reads or plays with small toys or organizes his Pokemon cards. I have a tape recorder so he can follow along with book tapes from the library. I don't stay with him while he sits on the toilet. I know some people play games and read to their kids while they sit, but I have another two-year old son that I get ready for bed while Owen is sitting on the toilet. Anyway, I decided early on that this was something he would have to do for a long time (like forever!!) and it would be best to establish some independence about it right away. I administer the enema (he helps squeeze the bottles) then I leave him for 10-15 mins. Then he gets up on the toilet, and I drain the catheter balloon, and remove the catheter. For now, I do the clean up, then I leave him to his activities. I also give him a glass of water to keep within reach because he gets very thirsty. I have a clock in the bathroom, and tell him what time he can get up (like when the big hand is on the 6) He then wipes himself with flushable wipes and flushes the toilet

From Karen

We had difficulty with Mac when we began enemas in September 1999 at age 3 years, 3 months. My husband made a big poster with "Mac's Reward Board" written on it. Following his enema, Mac could choose two stamps (and the color of ink) and a sticker for the board. I was amazed at how he responded to it.

From Ann McCullough in PTN News Vol. 3, #5

Around age 11, Matt began resenting the enemas and let me know it! My impression was that he must have finally begun resisting the whole idea of his bowel problems. Looking back now, I realize he was objecting more to his lack of control over the situation, rather than the problem itself. My desire to “help” was more of an interference and an invasion of Matt’s privacy. I had to “let go”; become less involved myself. He needed to take over and he did just that.

Warnings Re: Latex

From Elizabeth (Mom to Noah)

Warning regarding using fleets bottles to administer enemas - they contain a latex valve, not good if your child is latex sensitive/allergic

From Anne (Mom to Ben)

I removed the valve until I found the irrigation bag that I am now using. The generic brand I bought at Wal-Mart didn't seem to bother him but the house brand at Osco Drugs and the Fleet brand seemed to. Although he didn't have the type reaction that he has experienced when he has come into direct contact with latex, his bottom was VERY VERY sore--there were several days when I had to pick him up from school because he could not stand the irritation & was taking 3 - 4 oatmeal baths a day. I couldn't figure out at that time what the problem was (and it may have been a combination of things) but I'm certain now that that latex at least contributed to it. Also, removing the valve made it very difficult to use the enema bottle--not enough force to propel the liquid. The irrigation bag seems expensive--$25.00--but the woman at the store said that it should last at least a year or more depending on use & care.

From Karen B. (mom to Sammy, almost 4, cloaca, etc.)

We use a 24 fr non-latex catheter (we recently found out that the green silastic catheter we used did have latex in it). The non-latex one is clear, so you can see the water going in (and out!) through it. It isn't very flexible.

Using Catheters and MIC Kits

Test the balloon before inserting it

Put ky jelly on the tip of the catheter that you insert into the rectum

From Peggy (Mom to Sean, 8)

Wash your hands before & after any contact w/stool, EVEN WHEN YOU WEAR GLOVES. Inflate the catheter balloon to 30cc with the syringe before inserting, then deflate to make sure it works. Close the red roller clamp (down position) before adding the fluid to the bag. Add the fluid (450cc), roll up roller SLOWLY and let it drip until the tubing is filled w/ fluid. Close roller (down position) when tube is full. Pull the syringe back to the 30cc mark prior to filling the balloon. Have Scott lay down, lubricate the tip, insert catheter as far as it will go & inflate the balloon about 10cc. Try to insert the catheter a little further, if you can't there is probably stool in the way. Continue to inflate the balloon to 30cc, SLOWLY. Once the balloon is inflated (you can tug on it to make sure it's sealed off his colon. Twist the syringe out and place it by the toilet. (The balloon should remain inflated.) Push the air out of the syringe to be ready to deflate the balloon once Scott is on the toilet. Open roller clamp again. Go from a slow drip to a steady flow of fluid. If Scott complains, roll the red clamp down a bit to slow the flow. Continue until all fluid is inside. When the fluid is gone, roll the clamp into the down position. Try to get Scott to lay on his tummy for 5-10 minutes. The longer the better. When he's ready for the toilet, make sure to carefully move him to the toilet. If you bend the catheter, this should help any leakage if the catheter gets disconnected. Once he's on the toilet, insert the syringe and pull 30cc of air back into it. This will release the balloon. Catch the catheter with toilet paper or wipe. Run water through the bag and catheter with one squirt of anti bacterial soap until it runs clear. Scott should remain on the toilet for 35-60 minutes. You can usually tell if he's had a good evacuation.

From (Mom to Steven, 6, HIA)

My son is almost six, and we just started him on the enemas about five weeks ago. We too had a problem with the water leaking out everywhere. The first week into this I felt like my bathroom needed to be condemned!!! I then found out about the foley catheter with the balloon and it has made things much easier at enema time! Steven uses an 18 French with a 30cc balloon. Let me explain to you what this does, as before I actually got it in my hands I had a hard time visualizing it. It is a catheter that has a split neck at the top, you put the line to the bag in one opening, and the other opening is where you insert the syringe to fill the balloon. I have heard that some fill with water, we just use air. Once I have the line for the enema bag attached to the foley, I put surgilube on the end and insert it in to his rectum. I then take the syringe pull it back so it fills with air, attach that to the other "neck" on the foley and depress the syringe. This fills an outer chamber, and it blows it up while inside his rectum, thus making a seal so the solution cannot seep through. When I first did this, I still got leaking until someone told me to pull on the line that goes into his rectum and keep it held like that. This creates a complete seal and it has made a huge difference for us. No more messes! You also need to keep your finger on the syringe so the air does not leak out the top of the foley. I do this with one hand, and usually read with the other. When we first started five weeks ago I had Steven lay in the tub and I too would try to hold his little cheeks together. This just did not work for us at all! With the balloon in place Steven lays on the floor on a chuck, and when the wait time is up, I help him onto the toilet, keeping a "pull" on the line until he is sitting. I then pull back on the air, Steven gives a push and out it comes. Simple! Steven holds in the enema for 15 minutes, sits on the potty for 20, and then we are done! I got all my supplies from Steven's GI doc initially, then prescriptions for more. One other thing: the foleys say on them one time use, but I use them over and over. I just run hot water through the bag after we use it, wash the end with soap and water, then soak it in my sink with very hot water and soap and I have not had any problems reusing.

From Laura (Mom to Brandon)

1. I put 500 ml of warm tap water in a plastic 2 liter pitcher. I then put between 3/4-1 tsp. of salt in the

pitcher and stir it up until it is dissolved.

2. We use an enteral feeding bag, so I pour all of the saline into the bag (with the clamp in the closed position) and hold it up over the tub, unroll the clamp and let enough saline run through to make the amount in the bag equal 350 ml. I thump the sides of the bag to get the air bubbles out. We use a coat tree to hang the bag from and I adjust the flow of the saline using the roll clamp instead of having to adjust the height of the bag. This works well for us.

3. I pour 3 tsp. of liquid glycerin into the bag. It will all sink to the bottom, making it the first of the liquid to go through the tubing.

4. I have Brandon lay on his left side with his left leg pulled up toward his chest and he lays on one towel folded like a square (extra absorbing power) and another one that is folded in half, and in half again. One end I put on top of the square folded towel, and this is the end his bottom is on. The other end I fold over his right leg and lay his left on top of it to sort of keep things from squirting out, if that should happen.

5. The catheter we use is either a 22, 24, or 26 French Foley catheter (whichever we have at the time, as we get samples at no charge from our medical supplier) with a 30 ml balloon. They are 100% silicone. So far Brandon has not showed any signs of a latex allergy, though. Just being cautious. We have used the silicone coated ones too. I lube the end up really well with K-Y Jelly and insert it until there is only about 4 inches of the catheter that is left on the outside. I think this would make the length that is inserted somewhere between 8 and 10 inches. (The higher, the better) If you can't go this far, that's okay. Go as far as you feel comfortably going. Just go slow. Sometimes I fill the balloon and sometimes I don't. I have found that if he may be impacted, or plugged up, then as the saline is going in, I sort of pull the catheter in and out a few inches at a time. For some reason this helps to break up and loosen the stool. If you do fill up the balloon, after it is full, tug on the catheter until it is snug. This will help to sort of "seal" off the rectum. It doesn't make that good of a seal on Brandon, though.

6. Unroll the clamp until it is about halfway. You may have to open it all the way until the glycerin has passed through (if you chose to add it) because it is pretty thick. You can tell from the flow in the little plastic "window" how fast the solution is going in. I try to keep it at just above a drip. Meaning, it's going faster than a fast drip; the flow is continual, but not at full blast. If you go too fast, the child will have cramps. Sometimes the cramps are good in the sense that you know peristalsis is happening. The child is uncomfortable during this time. It takes roughly 10 min. or so for the saline to empty completely.

7. Deflate the balloon, remove the catheter, and put the child on the toilet (we still use a potty chair) as quickly as you can to prevent leaking. Brandon sits on the potty chair for at least 20 min. Sometimes 30.

8. To clean the catheter, I turn the hot water on full blast in the tub and lay the catheter end in the tub. Since I am right handed, I put two or three squirts of a soft, antibacterial soap (like Soft-soap) in my left hand, hold the catheter with my right and lather it up. Rinse the catheter and hang it from a clothes hanger that I've rigged up on my towel bar at the opposite end of the wall from the shower head to drain into the tub. The bag, I fill up with hot water, and hang it from the shower head. Unroll the clamp and let the hot water run through.

9. On the second enema, repeat steps 1 and 2. On step 3, I put in 1 1/2 tsp. of liquid glycerin though. Steps 4-8 are the same.

The last enema Brandon had, the second one produced completely clear water with mucous-like stuff floating in the water. The indicates that he is completely cleaned out. ]If you need to talk to me, or if anyone has any questions for that matter, please e-mail me privately and I will give you my number.

here's what we do.

From Cindy (Alex's mom)

Here’s what we do:

1. Alex lays down on his side. I mix his enema, 3 tsp salt, 1/2 adult fleet mix and fill bag to a total volume of 700 cc with water. I use warm water for the formula. I fill the syringe to 20 ml. I lubricate the foley, insert it in the rectum, making sure that it is up high enough. I then inflate the balloon with the water from the syringe. (If you don't fill the balloon with enough water, the catheter can come out) If the foley is not inserted far enough, it will be uncomfortable when you inflate the balloon. If this happens, just deflate and push the foley up higher.

2. Pull slightly on the foley until you get a little resistance.

3. Take the stopper out of the foley and insert the tube for the bag, slide the clamp on the tube from the closed position to the open position, raise the bag and keep elevated until all the mixture is gone. (The higher the bag, the faster the solution will go in. You need to experiment to see what's comfortable for Sean).

4. When the solution is gone, crimp off the tube, keeping the bag elevated so that the solution doesn't siphon back into to bag, insert the stopper. Alex then lays still for 5 minutes, gets up and sits on the toilet. He uses the syringe to deflate the balloon and sits on the toilet for 45 minutes. If the foley keeps falling out, your should check to make sure that you're filling the balloon with enough water. If Sean has an enlarged colon, it may need to be filled with more water. Also, if the balloon is broken it won't fill. We've had "blow outs" before.

From Rose

My son (who will be 15 yrs old tomorrow!) recently started a daily enema routine. He handles the whole thing himself. His routine goes like this: he was given an enema bag (by our surgeon) along with a foley (?) catheter. He hooks up the foley to the bag. He fills the bag with about 1000-1500cc's of warm tap water from the sink. Then he hangs the bag from a hook in our bathroom (near the toilet). At the other end of the foley are 2 openings. One is inserted quite easily into his rectum (it also has a tip that inflates into a small balloon once inside of him and it's about the size of a half dollar), the other opening is where he inserts an 'air syringe' that inflates the balloon. Once the balloon is inflated he allows the tap water to drain from the bag into his rectum. All of this is done while he is sitting down on the toilet and the risk of mess is nil. He lets the tap water sit inside for a few minutes then he deflates the balloon and the whole intestine cleans out thoroughly! The foley is cleaned in the sink next to him and he is all set until the next night.

Comment from Lori P. (Mom of Karly, 5, cloaca)

I read your enema steps and they were pretty much the same as we do (did) with Karly. I was amazed though as to how high you are able to go. If I can get even half of the catheter in I feel lucky, usually we can't push it farther than 3" past the balloon. We always use the balloon and then put Karly on the toilet while we let the saline go in. You might try putting Brandon on the potty chair before you release the balloon that way you don't have to rush or worry about any leakage.

From Kathy (Mom to Aaron, 5, IA)

Aaron used to have soiling between enemas also. What we did was to first give the enema with a catheter to get it up higher. We did not blow up the balloon at first but then after some time we started doing that because Aaron cannot hold the solution for longer than a minute or two at the most. The balloon acts as a cork so the solution cannot get past it. You can buy the catheter at any Walgreen's Home Health store, or other medical supply stores. Some states require a prescription to buy it.

From Cheryl (mom to Scott, 4 1/4, high ia)

We use a 18fr foley catheter. I used to struggle with trying to get the catheter up high and often ran into some scar tissue that Scott has. I, then by default just tried to get it up as high as I could and inflate the balloon and figured with the amount of solution I was giving Scott, it has no where else to go but up! At the UOA conference Kathy Guardino said if the kids tend to have soft stool and you're actually inflating the balloon, and preventing the solution from coming back out, it's not as important how high you get the catheter. For those tending toward constipation, you should try to get the catheter up as high as possible. Now, I usually get it about 2-3 inches inside and then inflate the balloon to it's full 30cc's and tug back at it to make sure I have a good seal.

From Nova

I, too, had a problem with enema fluid leaking around the balloon until I got one little hint from NY: towards the end of filling the balloon give a gentle little tug to create a seal around the bottom of the balloon. The child will let you know if the tug is too hard. (I am talking GENTLE here) But it made all the difference back when we were doing rectal enemas.

From Cheryl (mom to Scott, 4 1/4, high ia)

Do you pull the syringe out once the balloon is inflated. I too had tons of leakage until the home health care nurse showed me how these balloons stay inflated if you, once inflated to 30cc, twist/turn the syringe and remove it. This keeps the balloon inflated until you're ready to release it once Brandon's on the toilet. Before I knew this "trick", I would try to hold the syringe and the fleet bottle to make sure the balloon stayed inflated. I could never do it. I needed that third hand! You can practice this prior to inserting the catheter. I now always check the balloon outside of Scott before I begin. You can give me a call if you want direct info. Just e-mail me directly.

Bonnie M. (mom to Amy- 7 years old - VATER)

We use a 24 French (diameter of the catheter) 30 ml (size of the balloon) 100% silicone catheter which we attach to an enteral feeding bag (used for large volume g-tube feedings). Both of these should be readily available at a home health supply. Some stores only carry silicone coated latex catheters (which are safe of latex allergy) but I prefer the 100% silicone since the balloon lasts longer. The balloon effectively acts at a "stopper" at the rectum and would allow us to administer the enema fluid with Amy sitting up on her potty. After all the fluid had flowed in we would deflate the balloon and remove the catheter.

From another note:

You can get the catheters with balloons up to 40 ml. There is a 100 ml bowel maintenance catheter, but it is very expensive. Try the 40 ml first - you should be able to get it for approx. $15 at a home health supply.

Bonnie M. (mom to Amy- 7 years old - VATER)

When we were doing the enemas she was more comfortable being able to lay on the bed to get the catheter in, rather than being in the bathroom where she would have to lay on the floor. I also bought a used IV pole to use to hang to bag so that I was free of having to stand there holding that bag up while the water ran in. Eventually she was able to "finish up" herself - close the valve on the bag when it was empty, deflate the balloon on the catheter and remove the catheter herself. I used those disposable blue pads for her to lay on when inserting the catheter and then to lay on the floor to catch the catheter when it came out.

From another note:

If the bag has long tubing you may need to hang it from either a hanger on the back of the door or the shower curtain bar. I used a clothes hanger when Amy did it in the bathroom.

From Susan,(adult, HIA)

The balloon is part of a Foley catheter tube. The tube is actually one tube inside another. One area of the tube expands after it's inserted when water is injected through a syringe. I finally located an enteral or gravity feeding bag to use instead of the enema bag. It cost me only $4.00 plus several phone calls to medical supply stores, and a lot of time at a home health agency where I had to give many explanations as to why I wanted to purchase such a thing.(!)It was well worth the effort; its easier to control the inflow, you can see the quantity because it's clear plastic, and the end of the tube will fit snugly into a Foley catheter.

From Karen B. (mom to Sammy, almost 4, cloaca, etc.)

We use a standard quart container (like you get at the deli), and put 24 ounces of warm water in it, and add a heaping teaspoon of salt. We have a 6 ounce bulb syringe that we use to put the water from the container into the catheter. We use a 24 fr non-latex catheter. Scott has recently started using the balloon (5cc's) in the catheter.

From Mary R. (Mom to Rich, 10, HIA, 62lbs)

My son, Rich does his enema totally on "the pot" with success and it usually isn't messy other than remembering to clean the toilet and seat more often. Sometimes he only feels comfortable taking the first 2 of 3 cups, I clamp the tube, let him poop and then give him 1 and1/2C.about 20 minutes later. I can't say enough about the MIC bowel management kit. It is all clear so you can see that the air is out. I prefer to use a large 20cc syringe (ours is from a vet!) to put the air into the balloon. Rich's is an 8french with a 100cc balloon, However he can only use 20cc of air...just enough so it doesn’t fall out and the water doesn't leak out. We put a colorful hook into the ceiling not far from the toilet. After he takes in the solution (presently 3 C. lukewarm water with a tsp. of salt and 2tsp. of liquid glycerine), he cant hold it once he has that much ...I release the air, the tube falls out and then he sits there for @ 30-45 minutes.

            Rich can only endure 20cc. of air in the balloon and if we put more than that he lets me know that it hurts and if it's less than that, the water leaks out and the cath will slide out. There is a ring around the tubing (in Rich's it's at the 5 now) so that we insert it only that far. I've asked his ped surgeon and BM nurse to assure we're getting it placed high enough. I just clean the inserted end with soap and water when we're done each night and hang it in the shower. Occasionally, when the tubing or bag looks gunky, I clean it with shampoo and water and one of those "uri-brushes" advertised in the ostomy magazines. That's a rubber coated wire with a brush end.

Other Methods

From Shannon (Nate's mom, 21 months, IA)

Question: I've been giving Nate enemas for 6 months and they were going very well for a while. Lately, as I've been administering the enema, he's decided to "push" as the liquid is going in. The surgeon thinks he might be obstructed, but I think that his natural reaction is to push out something that's uncomfortable. Has anyone encountered this problem and if so, do you have any suggestions? I have tried everything to keep him too distracted to push, but he's persistent. It's also become quite a game for him now, so I'm not sure how to get back on track. Any ideas?

ANSWER from Karen B.: Sammy does the same thing, but is 4 1/2, so Scott can just tell her to stop. He suggested that you try to hold his butt cheeks closed, which works for Sammy. You could also try using a foley with a balloon - we never had any luck with that - it seemed to make her uncomfortable, whereas holding the cheeks closed never posed a problem

From Muriel

In the Netherlands we use a different system. It's like a feeding bag with a tube and a conus made of soft material. The bag is filled with water (or any solution), The child sits on the toilet holding the conus against his/her bottom while the water is going in. The child has the power, he/she can decide how fast the water goes in. When the water is in, he/she can remove the conus and stay on the toilet until he/she is cleaned out. This system can be used by children seven years old. The parent can stand by, but the child does it all by itself.

Timing of Enemas

Excerpted from Bowel Management for Children with Anorectal Malformations by Kathleen Guardino, RN, MSN in PTN News Vol. 5, #2 Spring 1996

The timing of when to give the enema may also play a role in how efficiently it cleans the bowel. We recommend giving it after the main meal of the day so as to take advantage of the gastrocolic reflex. The child should be encouraged to take their time when toileting. This could be time used for homework, special reading, or a favorite TV program.

From Karen B. (mom to Sammy, almost 4, cloaca, etc.)

We mostly do the enemas at night, after dinner, but we also like to be flexible depending on our schedule. We started doing them in the morning before she was in preschool, but we then worried about her having a post enema accident at school, so we switched to the evening. I think that after dinner produces the most consistent good returns, but doing the enema before dinner or skipping a day here and there has not been a problem. If we want to go out to dinner with Sammy, or have an afternoon/evening party with her, we will sometimes skip the enema and do it the next morning, which hasn't caused any problems. If Scott and I are going out without her, and either a baby-sitter is coming over or if she is spending the night at my parents, we will just do the enema before dinner. That also hasn't caused any residual problems. Now that she is in preschool every day, there is no way we could do the enemas in the morning. I would also be too worried about an aftereffect accident, so I think the evening is the best time in general.

From another post by Karen (I am not sure if it was earlier or later than the previous one)

We are lucky in that Scott works at home, so he goes up to do the enema with her while I am making dinner. They are done by 6:15 or so, and then we can enjoy the rest of the evening. We used to do it after dinner, but by the time she was done, it was bedtime, and we didn't think that was fair to her....we were flexible enough in our schedules that we could change it to before dinner.

From Laura (Mom to Brandon)

Hi, Anne, I, too, started doing Brandon's enemas in the a.m. but found that it took too much time. By the time we got finished, the afternoon was over and it was evening. For some reason, it goes much smoother in the evenings. Also, if there is going to be some post enema fluid to come out, I would much rather it come out while he slept than have it come out while we are out in public somewhere.

From Shannon (mother of Nate, IA, 17 months,)

Question: I have recently switched Nate's enema from nightly to in the a.m. after breakfast. I have noticed that Nate is unable to "retain" as much solution when I give them in the morning. It's almost like there's a blockage. Is it better to give them at night? He still has an occasional bm whether given at night or morning.

Answer from Muriel

I think I can answer your question. Breakfast starts up a bowel movement. A bm is stimulated by eating. That's why it might be a bit harder to give enema's after breakfast: the poopoo is coming down, while the enema goes up. It's like driving against the traffic, if you know what I mean.

Debbie (mom to Lydia, 5yo, HIA, cecostomy)

Lydia gets her enema (via cecostomy) in the morning. We were told to start this way although it totally threw off my morning routines. We didn't have much luck until I started to do them about 15 minutes AFTER breakfast. We were doing them first thing out of bed and I should have known better. So if you are switching or contemplating a morning routine, just remember to let the gut 'wake up' and get moving with some food.

From nancy

Most people do daily enemas. When we did that, Owen leaked all the time!! The first day would be great, then he would leak the second. In fact, I gave up on the enemas when he was three because I thought them dismal failure. When we started up again at age five, I was willing to do a little experimenting (with the doctor's guidance every step of the way!) to get it right...reduced the amount of solution first. Smaller leaks, but still frequent....increased the concentration (full-sized Fleets)...much better - but still not perfect. So I gave no enemas for two days....then gave one and waited to see when he would have a leak....figuring that it would dictate the frequency of his enemas. After 48 hrs...still clean!!!!I didn't want to go any longer than that....so I gave him another enema....and he's been clean ever since!!!! Every other day was the key for us...which I love!!! It means he can have sleepovers, and my husband and I can go away overnight and leave the kids with my sister!!

Tips for Getting Better Results

Many children are sensitive to certain foods which will induce accidents. At least one PTN member outgrew these food restrictions over time.

Before Giving the Enema

Doing stomach crunches after a meal and before an enema seems to help the enemas be more effective.

From Bonnie  (Mom to Amy)

There are 3 things that Amy can eat the really help her to have a better enema - fresh peaches, fresh mango or dried apricots. I think that it is a combo of the sugars and fiber in these that help. We try to have them right before bedtime since she does her enemas in the AM.

After Giving the Enema

From Bonnie  (Mom to Amy)

Amy gets better results after her enemas if her knees are up. Emily may need a large stool to put her feet on while she is sitting on the toilet

From Karen B. (mom to Sammy, almost 4, cloaca, etc.)

Sometimes after she is done, we have her jump around a bit with the diaper on and more poop sometimes comes out!

Eliminating Leaking After Enemas

From nancy

Owen does rectal enemas every 48 hrs. We used to have a problem with leaking after he got up from the toilet. I increased the concentration of the solution. Owen used Fleets with the child-sized (1/2 adult) + about 200 cc normal saline. He would always leak about an hour or two after the enema. I increased the amount of Fleet to an adult sized but did not increase the salt water to increase the concentration. This gave the bowel more stimulation - and it emptied more efficiently. Later, he started leaking several hours after the enema. I increased the volume of solution to clean out the bowel more effectively. And now we have been on a long clean spell.

From Jane (mom of Tyler, 6 yrs., HIA, cecostomy)

Since getting the cecostomy, the only time Ty may have occasional leaks is when he's on antibiotics, and that's usually only a worry for about an hr. after the flush. He had LOTS of leaks though after rectal enemas. We tried to have him move around on the potty, rubbed his tummy to help things move along, had him stand up a few times, etc The water just seemed like it got stuck up there. Sometimes the movement helped and other times it didn't. Could Jordan be a bit constipated that a dose of a laxative might help loosen it up so it gets flushed out? When we see Ty have a not so good flush, we give him a dose of MOM that night and the next flush is usually a good one. We found adding glycerin to the salt/water works best for Ty. Salt, water and Fleets didn't do it. Using a bit more solution may help too. We will do that sometimes to help him when he's sick and gradually go back to 300cc.

From Beth (mom to Ashllie, 6yrs, IA, Malone)

The first time Ashllie had leakage after her irrigation I called the surgeon. He said that maybe we didn't get her completely cleaned out, to add another pint of the water and salt solution and see if that made a difference. It was a couple days later when we finished the irrigation that I noticed she was having some leakage and so I put her back on the toilet and ran another pint. It worked, and indeed there was more stool that came out.

Monitoring Returns

It is Vital to Monitor Enema Returns for All Types of Enemas

From Susan (Adult, IA)

Are you able to get the solution back which you're using for enemas, or is Brandon retaining it? When I was 2, I had seizures following a "high enema" which the doctor had ordered. I think the tube was inserted very high. Apparently the fluid got trapped behind impactions and remained there. The seizure ended when a doctor in an emergency room finally stuck a tube into me and drained the fluid. My impression is that it was an unusually large volume enema. I don't know whether it was saline or plain water, but I suspect it may have been plain water. (I don't recall hearing my parents talk about saline.) In one post, Marti referred to seeing a child with seizures in the emergency room who had been given large volumes of plain water. This is the only time I've ever heard of anyone else having seizures from an enema, and I've never talked with an M.D. who's ever heard of it either. It was the only time in my life that I ever had a seizure. And I've had many many enemas. I don't want to scare you or anyone else, but felt the need to respond immediately.

From Dee

When he eats a lot and is very active, we have a big return If he is sick and eats very little, sometimes 3 days go by before we have a good enema. Steven has never been impacted. The mucous at the end is a great indicator for us that he is clean, the soft belly and limited cramping also indicates no back-up.

From Cheryl (Scott's mom, 5yrs, HIA & Malone)

Kathy G. said mucous is the sign that the solution has passed completely.

From Laura (Mom to Brandon)

I had the same problem with Brandon about a month ago. I was doing enemas on him as usual, but the color of the water coming out was green. During this time he had soiling in between enema times (every other night). I guess it turned out to be a virus of some sorts because for about 1-2 weeks his poop was green. (Although he had no other symptoms). After, it turned back to brown, the enemas started working again. My guess would be that it is an intestinal bug. Let it run its course. I did keep doing the enemas

during this time.

From Lori (mom of Karly 4 1/2)

There have been many times that Karly has soiled the next day -- usually in the 18-20 hr period after the enema. But usually this is thick toothpaste like poop. The only times that we have liquid poop though is in the time period after the enema and before bed (30 -60 min). Occasionally if she has gone to bed right away then we may have liquid poop in her diaper or pullup and then the 1st time she goes to the bathroom she may be able to push some more out.

Discomfort

The only time when Scott gets uncomfortable is toward the end of his lying down for 10 minutes. Even this isn't uncomfortable each time.

From Kimberly

My GI suggested warming the solution help reduce the burning and cramping from fleet enemas

From Kathy (Mom to Aaron, 5, IA)

The catheter is actually softer than the enema bottle tip, so we found it easier to use because Aaron said it is more comfortable. He fought less while giving it. Warm solution and saline reduce cramping, so if your child is uncomfortable while receiving an enema, try warming the bottles in a sink full of hot water before hand.

From Nova

Three things can cause cramping to my experience:

1) enema solution that is too hot or too cold : body temp is good

2) solution is administered too quickly

3) salt concentration is too high

Note: someone else posted that they drain a 500ml bag in about 2 min. If the child wanted a break, she just clamped the line for 30 seconds or so and started up again.

From Susan (Mom to Joey, 8.us)

Tonight I had inserted the catheter and was putting the fleets and saline in and Joey said, "Have you started yet?" So I said yes that I was almost done and couldn't he feel anything. He said, "No, I feel it when you first put the catheter in, but then I don't feel anything at all until right before I have to poop." Joey has always had a real urgency when he has to go to the bathroom. He says I have to go NOW and he means in the next 5 seconds. So I wonder if maybe his anus has sensation but nothing else does. His anal manometry indicated normal sensation. My husband says that he doesn't think its unusual for him not to feel the catheter after its initial insertion or the fluid going in. So what do any of you think?

From Bonnie M. (mom to Amy - VATER - 7 years old)

Since Amy also has daily enemas I have tried to get an understanding of the mechanisms involved. This is how I understand it - - The colon is a long tube which balloons out at the end right before the rectum. The larger portion is called a reservoir. All during the day feces move through the colon and collect in the reservoir. We are generally not aware of the movement of the feces or the collection until there is sufficient quantity to require a BM. The pelvic floor muscle which surrounds the colon is what actually "feels" and responds to the colon being full. The way I understand it what Joey feels when you insert the catheter is the stretching of the external sphincter and then he would not feel anything until the reservoir was full (as long as the enema fluid was of a tepid temperature - I think there might be some sensation if the fluid was cold or hot). Amy has never seemed to feel the water actually flowing in but does know when she is reaching capacity and tells me she needs to poop. BTW - her surgeon here told me that the typical reservoir would hold 100 to 150 cc. Amy does not have a reservoir which is part of her problems.

Supplies

From Bonnie M. (mom to Amy - VATER - 7 years old)

Amy's surgeon here in Birmingham has sent us a present - a new bowel management catheter! It is 24 French with a 100 ml balloon - 100% silicone. The catheter is longer than the foley we have been using, has a flat ring which slides down the tubing to let you mark how far you want to insert the catheter and even has numbered graduations (for insertion length) marked on the catheter. It is my understanding that the catheter is also available as part of a kit that contains a bag for the enema fluid. It is manufactured by

the Medical Innovations Corporation (MIC) and their number is 800/345-1595 (800/262-4080 in California). Since Dr. Georgeson gave this one to us I have no idea what the cost is.** The bowel management kit is item 0500-24-100 for the 24 French size catheter and the nurse's note says that they also make one with an 18 French. Extra tubes are item 0510-24-100. Now - for those that the smaller balloon catheter is working there really isn't a need to change, but for older children when the 30 ml balloon becomes inadequate then this is the only alternative. The best info I have is that foley catheters are not made with a balloon larger than 30 ml.

            MIC Bowel Management Tube

            100% Silicone

            Manufactured by Medical Innovations Corporation, Milpitas California

            408/945-1730 and 800/345-1595

They also have a web site - don't remember the html but you should be able to find it with a simple search. You must have a Dr. fax the RX for the first balloon catheter (because it comes in different sizes) but after that if it wears out you can call for parts directly.

** From other PTN Posts:

The MIC was about $150 but we've been using it nightly for 5 years and only had to get a new cath twice and a bag once.

Another person said the kit was $98.

From Kimberly

I found a way to obtain irrigation supplies rather cheaply

1 davol irrigation tray with piston syringe - this set come with a piston syringe, catheter tip and luer adapter (this makes it easier to put on the catheter), a collecting basin with has a neat thing on end to put the catheter in, a container that the syringe fits in very nicely,  the syringe is 60 cc. It is reorder number 3849 from davol inc.,100 sockanosset crossroad, cranston ri 02920. 401-463-7000

Saving Money on Supplies

From Michele (Mom to Victoria, 5yrs)

Posted Sept., 2000

I recommend shopping online at http://www.medline.com . I've used them twice now, and find their prices to be about half what I'm paying through a home health agency for tubes, lube, tape and fleets. A box of fifty 15" #8 french feeding tubes cost me about $40 as opposed to the $90 I was paying through a home health firm. I bought tape and enema (fleets) in bulk and saved money over even going to Walmart. It was a bit overkill to get a case of surgilube, but it gave me the freedom to set up "emergency packs" with every thing she needs at grandma's, school, the car, our office, etc.

Just a thought.From Kimberly

You can order saline from your doctor and your insurance may pay for it.

From Kathy (Mom to Aaron, 5, IA)

I read packages of enema solutions in the past, and from what I remember the adult solution was exactly twice the amount of the pediatric solution. Kathy from Dr. Pena's verified this. We now actually buy the adult Target brand enema (it costs a lot less) and pour half into an empty bottle. We then follow this up with saline to make sure all of the enema solution is out of the catheter.

From Laura (Mom to Brandon)

I got my first enteral feeding bag at our local medical supply store. They gave it to me as a sample and it worked. I haven't had to replace it yet (8mos. ago). They also gave me some samples of catheters. I use either a 22, 24, or 26 French Foley catheter with a 30 ml balloon, depending on what they have in stock. Usually I can get a couple of samples and don't have to pay for them. Right now, though, we are trying to get our insurance to cover all of Brandon's supplies, so I had to get a RX from Dr. Miller. I wrote him a letter with a list of supplies that I use and he wrote a detailed letter to the insurance company requesting that they consider paying for them since Brandon will more than likely have to use them the rest of his life.

From Linda

With my son's Malone we still use 1/2 adult fleet at least once a week. When we did "traditional" enemas we always used 1/2 adult fleet with homemade saline. I found Walmart (generic brand) to have the absolute cheapest of the saline enemas. Here in California it is $1.27 for a 2-pack. This 2-pack used to last us 4 days.

Going from Enemas Back to Laxatives

Excerpted from Bowel Management for Children with Anorectal Malformations by Kathleen Guardino, RN, MSN in PTN News Vol. 5, #2 Spring 1996

            In those cases of children who have a successful Bowel Management Program with enemas, the parents frequently ask if this program will be needed for life. The answer is "yes" for those patients born with a poor prognosis type of defect (very high defect, poor sacrum and poor sphincters). However, since we are dealing with a spectrum of defects, there are cases with some degree of bowel control; we subject them to the bowel management program because we do not want to expose them to occasional embarrassing accidents of uncontrolled bowel movements at school. However, as time goes by, the patient becomes more cooperative and more interested and concerned about his/her problem. It is then conceivable that later in life, a patient may stop using enemas and remain clean, following a specific regimen of a disciplined diet with regular meals to provoke bowel movements at a predictable time. Thus, every summer, the patients with some potential for bowel control, can try, on an experimental basis, to find out how well they can control their bowel movements without the help of enemas.

This is done during the summer vacations to avoid accidents at school. We expect the parents and child to stay at home, to socialize very little, to have a regular diet with a regular schedule. The child must sit on the toilet after every meal and try to pass stool. In addition, he must remain alert all day while trying to learn to discriminate the feeling of an imminent bowel movement. If the child belongs to the "constipated" group, we usually suggest they take a laxative every day in a single dose, as to try to provoke an effect as controlled as possible; ideally, that is, a single bowel movement per day. We adjust the dose of the laxative by trial and error. It is best to first try the less aggressive and natural types of laxative, and then, depending on the patient's response, move into medications with more active ingredients. The first choice, of course, must be a laxative type of diet; the next one is either a bulking forming type of product or else a stool softener. If these medications don't work, a laxative with an active ingredient is indicated. After a few days or weeks, the family and child are in a position to decide whether they want to continue with that regimen or go back to the bowel management program. This decision is theirs and is based on the quality of life that they experience with each type of method.

Kathleen (Mom to Sean, 8)

My son Sean is 8 and we have successfully gotten him off enemas. Two summers ago we tried stopping the enemas and starting laxatives, and he got to the toilet 50% of the time. Was he too young? Did we not have the right combination of laxatives? I don't know. This past summer, when he was almost 8, we again stopped the enemas and started the laxatives, wondering if it was even worth the trouble, and to our delight and amazement, it worked. By August, however, he was retaining stool again, and I put him back on enemas. I took him out of school the first half of November to start the laxatives again. This time we are keeping a careful watch on the output. If it seems low on any particular day, he gets an enema. Or, if more than 2 weeks go by without an enema, we might give him one just to be sure he's emptying. He has excellent control, and gets to the bathroom like anyone else. He even gets to the restroom on time when at school. He can even hold it a while if he needs to. As always, I know things may change, and we must be very careful in monitoring his output and medication, but hopefully his success will continue. Before we had success putting Sean on laxatives, I had never talked to anyone who's child had gone from nightly enemas to successfully continent on laxatives. So I am writing this so others may know it may be possible. Regarding the details of the transition: The first night you give your child an enema and laxatives. The next day, if he has enough bm, just give him laxatives at night. If he didn't have enough output, give him an enema and increase the laxative dosage. The two laxatives we use are Senokot and Metamucil. I wouldn't try to make the switch using diet. (And we previously had an all-natural attitude. I used no pain relief medication during the 12 - hour labor, for his birth, etc.) But very often these children's' constipation is so great that food can not help them evacuate sufficiently. Also, it would be difficult to get your child to eat the same amount of the same fibrous foods everyday, and consistency is important in the beginning. Later, once you have determined that your child can be continent, you can experiment with diet. You will need to work with a nurse on this. Kathy Guardino was very helpful. Beth Harrison, at Childrens Hospital Los Angeles is extremely helpful and returns call or e-mails the same day. She has a very good understanding of the condition and offers very good advice and direction. She works with Donald Shaul, pediatric surgeon, who is also excellent. Let me know if you have any more questions.

Alternatives to Enemas - Cecostomy and Malone

Terminology

Marti, MS, RN, CS

Here's a quick explanation about cecostomies. The purpose is to enable the patient to give an enema from "above" rather than "below" in order to get a better bowel cleanout. The actual method used is probably less important than the benefits of giving the enema from above (antegrade). Somehow an opening into the cecum (where the small intestine joins the large intestine, the beginning of the large intestine, and also where the appendix hangs off) is made. If I was more talented I'd scan a picture of the GI tract in, but I'm not capable of this. The cecum is in the right lower quadrant of the abdomen (the solution goes up, across, and down the left side). The enema is given daily or even less often to get complete cleansing of the colon; patients find the individual amount of time between cleansings that they can usually go. For our patients, it has enabled them to completely dispense with incontinent supplies, and enabled them to wear underwear and swim and all those things that continent people seldom think about. The assumption is that you can accomplish the same result with diligent rectal enemas. Unfortunately, many people don't like that method, and just won't use it. The cecostomy gives them the chance to stay clean without inserting anything into their anus, enables some children to perform their enemas themselves, and seems to actually do a better job of cleaning out the colon. For the child who is not continent following pullthrough, the options are usually: diligent rectal enema program, permanent colostomy, or cecostomy. It is really a matter of preference. We are attempting to address the likelihood of continence at younger and younger ages so that the children don't spend their preschool years in the constipation/overflow soiling/impaction cycle. We are very committed to exploring the options with families before children would start school in diapers. The different methods of placing the cecostomy should also be a choice. The Malone antegrade continence enema involves using the appendix as a conduit to pass the catheter through to the cecum. There are variations on every surgery, but the primary method is to make a stoma in the umbilicus through which the catheter is placed. The plus side is that it is not usually visible to others. The negative side is that the stoma tends to stenose, and sometimes they leak. Also, the appendix may be helpful for a urinary diversion if that is also needed, so we try not to use it in that case. The alternate method that is popular is to place an opening right into the cecum and placing a tube device which stays in place. We use a regular foley-like catheter initially, sewn right into the cecum. After 6 weeks we convert to a skin-level feeding device. Some centers place the skin level device initially. Some centers do the initial placement with laparoscopic surgery or in radiology with a percutaneous method. With the tube always in place, the patient then connects an extension tubing for the irrigation, and is otherwise capped off. (No leakage, no stenosis). This is a procedure that surgeons perform regularly in the stomach (gastrostomy feeding tube). It should close on its own if the tube was removed. None of our patients would even consider life without it now, even if they became continent (not usually likely). The skin level devices vary, and in my opinion there is not a perfect one made for this purpose. (The balloon inflatable ones stand out about 1/2 inch from the skin). I have been teased with hints in the literature about the Chait trap-door tube which is flush with the skin, but have not seen it yet (maybe in May at the Pediatric Surgeon's meeting...). Until we started doing cecostomies over a year ago, we could only tell patients who returned to us with soiling and impactions that they had to do the rectal enemas, or return to a colostomy. Now we have another alternative that has worked very well for many of our patients. My case study about one 7 year old with a cecostomy can be accessed through http://www.apsna.com. Being able to offer cecostomies to kids and get them out of soiled pants has been the most rewarding thing I've done in 16 years of nursing.

            A cecostomy is basically an opening into the cecum which is at the beginning of the large intestine. We prefer to put a device (actually a skin level gastrostomy device, commonly referred to as a "button", although we do not use the "button" that is trademarked with that name) into it. Others make a stoma that you put a catheter into. Others (Pena) have moved the stoma from the abdomen to the umbilicus to hide it. Usually the appendix is used as the "inside" tube, and a catheter from outside is placed into it to instill a solution. By using the device, the tube is left in place with a dime size device on the outside, just inside of the right hip bone.

            All of the cecostomy procedures use the appendix if possible. We would not use the appendix if it has been previously removed or if we think the child will need it for a bladder diversion. Otherwise, the "button" we place into the abdomen goes into the appendix.

From Bonnie

            Cecostomy is the general term for any procedure that provides a stoma and conduit to the cecum section of the colon from the abdomen. Malone is the common term for the procedure as developed by Dr. Malone, using the appendix as the conduit. The Monti procedure is another form of cecostomy which uses part of the small intestine to form the conduit to the cecum from the stoma. And there is the plain cecostomy which uses a tube/catheter or a button to provide the conduit from the stoma to the colon.

            The Malone is a type of cecostomy - which is any surgery which creates a stoma for administering an antegrade enema at the cecum level of the colon. The Malone is one procedure - using the appendix or neoappendix to connect from the stoma at the navel to the cecum. Another type is done using a small permanent catheter or a button (like Amy has). .There is also a procedure which uses a small section of the small intestine to fashion the "connection" between the stoma and the cecum.

ACE = antegrade colonic enema

Choosing Between the Malone and the Cecostomy

From Babette

When we were first told of the cecostomy tube, our surgeon also told us of the Malone. He told me his reasons for preferring the cecostomy tube for our particular case.

1. The placement of a cecostomy tube is a relatively simple surgical procedure requiring only a 2-3 day hospital stay,. The post-op care is very minimal. You can start using the catheter almost immediately.

2. The complication rate with the c-tube is much lower. You don't have strictures, (something we have had to deal with other places.), there isn't leaking of stool, (the tube is capped off) etc.

3. Michael would be able to retain his appendix, something he felt was good, if at all possible.

4. Removing the tube is very simple, out-patient, no opening him up. If (when) we ever got to the point when we didn't need the Malone, it would be a major surgery to take it down.

Cons on Cecostomies (as we've experienced):

1. risk of infection this has been easily managed with washing the area with Hydrogen Peroxide and the occasional use of Keflex.

2. The catheter can become dislodged, tugged. We've solved this problem by always keeping the catheter taped very well. If the catheter is dislodged, it can be replaced in outpatient surgery, they do not even open the abdomen. The catheter is replaced using a guide wire. (This happened once, we were in and out of the hospital in a 4 hrs, and there wasn't really any "post-op" care, as he didn't have any incisions.....very simple.

From Jane(mom of Ty 5 yrs. , HIA, cecostomy)

Dr. Fonkalsrud laid it all out. We liked the cecostomy because it was a simpler procedure to perform and to reverse, less complications, and we could keep the appendix if he ever would need it for the mitrafonaff. Our urologist was very happy to see we went this route too. Ty's new surgeon in Ohio, discussed all the options when we saw her a few weeks ago and said she does not like to do the Malone because of the complications and the strictures. Though the Malone is hidden, we didn't like the idea of constantly inserting the catheter "into" him through the appendix. The cecostomy seems to be a more of an external option, never actually putting a tube into his body for the flush, possibly easier to handle emotionally, for us and for him. As far as handling the site of the button, he's very proud of it and doesn't care if anyone sees it. If they ask what it is, he looks at them like "well it's my button, of course!!!". :) He just explains and they are ok with it.

From Nova  (Mom to Skyler)

Pena was hesitant to do the Malone on our son at such an early age for this reason. If we should need the appendix for the Mitrafanoff, then it would be available to use for that FIRST. When I asked our urologist, he said that while the appendix was an excellent conduit, if it wasn't available, he would still find a way to create a Mitrafanoff. Our urologist felt that since it WAS determined we needed the Malone, but not yet determined we would need the Mitrafanoff, then we should proceed with using the appendix for the Malone. This was the word from our urologist that I needed to convince Pena to proceed.

From Connie

Just a bit here about Malone's vs Cecostomies.. The cecostomy is a much simpler procedure, compared to the Malone. And from what I have been told, it is a procedure with less risk of complications. The cecostomy is also functioning by the time the child leaves the hospital. (Usually 48-72 hours post op) With the cecostomy, there are no long hospital stays, no waiting for things to heal, and no need to return to the hospital, or wherever to learn how to use it.

Marti, MS, RN, CS

Our children with the "button" don't seem to mind it at all as far as appearance goes. The biggest difference seems to be the discomfort and complications with the Malone: a catheter is inserted into the stoma at least once per day and some kids don't like that. The stoma can leak or stenose (tighten or close up). The "button" has the catheter connected to it, but has its share of problems with leakage around and "proud flesh" or granulation tissue. All of the procedures do the same thing- allow you to put fluid into the cecum, usually via the appendix, to flush out the bowel. The decision would therefore be based on what the surgeon knows how to do, and how your child would feel about a catheter put into a stoma daily.

From Art

A cecostomy uses an implanted device to create the channel between the skin and the intestine, and the Malone uses the appendix. The cecostomy is quicker and easier, but you have a foreign object for the body to deal with. The Malone takes longer, but there's no device to create a potential avenue for irritation or infection.

From Bonnie  (Mom to Amy, 10, cecostomy)

Both the Malone type and the cecostomies which use a "button" are a surgical procedure. There are pros and cons of both procedures. I would recommend that anyone considering one for their child to read all the available material on the success rates and complications by doing a Medline search. My daughter, Amy, has a Chait cecostomy button. She is 10 years old and is completely able to care for herself now. A Malone was not an option for her since she had her appendix removed when her colostomy was closed. But for Amy I would have still chosen the Chait cecostomy over a Malone - but those choices are very personal and while it was the right one for us it may not be for someone else.

The cecostomy is easily reversible. If it doesn't work well for Amy we can just have the button removed and the stoma will close in a few days. One thing at this point I don't want to do it put us in any corners. Medical advances being what they are and with Amy only being 10 I don't want to close any doors for future procedures that might offer her a better solution.

From Pat (mom to Kevin,7, IA, PDD)

Last Friday I had an appointment with Dr. Pena and we discussed the Malone vs. cecostomy. He said the reason he doesn't do cecostomy is because he feels that if there is a foreign body of any kind (tube or button) permanently attached to the body, it can lead to trouble. He said there is nothing like that with the Malone. He also said that cecostomies haven't been performed long enough for him to feel they are safe. He said he would give it 10 years.

From Amy (Mom to Bea, cloaca, Malone)

It's my understanding that foreign bodies -- such as the tube or button-- can become a site for infection, or generate allergic reactions. If your kid relies on enemas to remain healthy, then having a painful infection or reaction at the enema site could make enemas quite painful.

From Amy (mom to Katie, VATER, solitary kidney, etc)

Most of you are dealing with kids whose insides look more normal than my daughter's. Her "stuff" is almost all in the wrong place, 1 kidney, no uterus, one ovary, ureter the strangest shape anyone has seen, bladder made of intestine therefore acting/moving differently etc. One of the reasons her surgeon would prefer we have a malone done is because her stuff is in funky places and therefore placement of an artificial piece may be difficult. He would rather create a route using natural tissue (she has no appendix). He literally shuddered when we told him we knew of people doing cecostomy's non-surgically and strongly urged us not to let anyone do anything like that on Katie because in his words "goodness knows what they could puncture."

From Nova

Form what I understand, placing a cecostomy is much like placing a central line where you need to feel confident about the anatomical location and the surrounding landmarks inside the body - since it is done without opening up the abdomen. With the Malone, if things aren't where they are supposed to be, then the doctor can visually see exactly what he needs to see when he opens the child's tummy.

Mary (Mom to Andrew)

Here is something that also should be considered, prior to surgery. Andrew had a bowel resection at 7 days old. We opted for the Malone when he was 8 1/2 yr. old. When the surgeon came out from the procedure, he was scratching his head and informed us that he found Andrew's cecum under his liver, adhered to his gallbladder. Things can migrate after abdominal surgery. Just think of the confusion if they had gone in to do a cecostomy and couldn't figure out where the cecum was.

From Deanna (mom to Deanna, Marika, 7yrs)

After speaking with both Dr. Chait (who is in Toronto, Ontario), and Dr. Blair ('local' to us in Vancouver, British Columbia) we were faced with a difficult decision. Dr. Chait has designed a wonderful device that has not yet been surpassed, in my opinion. He does cecostomys percutaneously (through the skin). It is non-surgical and minimally invasive, low profile, and easy to manage (apparently...Bonnie and Sandy can offer more insight on that one maybe!). The Chait was definately our first choice. However, it would have meant traveling to Toronto (across Canada) for the procedure and follow-ups.

Here in BC, they use a different method, the MIC key in either an appendicostomy or cecostomy, depending on the child. After speaking with Dr. Blair and his fantastic ET, we felt that neither procedure is better than the other. They are both the same idea, but the procedure is different. Dr. Blair is a highly skilled surgeon who has had as much success with his method, as Dr. Chait has had with his own ideas. The radiologist at BC's Children's hospital trained under Dr. Chait and has done the percutaneous cecostomys but has not had the success with it that they would deem beneficial to anyone. Also, before we even spoke with Dr. Blair about it, Jane offered her insight with the MIC key (thanks again, Jane!). It was then that I realized that there are two sides of the coin, neither more precious than the other. Dr. Blair also took the time with us to explain the alternative cecostomy procedures, such as Dr. Pena's method, the "Texas" method, the "Iowa" method, Chait, and so on. He has even consulted with the Europeans for their expertise. Dr. Blair has told us that there are many ways to accomplish the same goal, but no one knows what will work best as each child is completely different. Having done all of Marika's surgery, (except the de-tethering), he knows best what Marika is like inside and out.

I realize that it sounds like we have Dr. Blair upon a pedestal, but in reality, we have given him much grief in proving to us that he can meet our daughter's needs. He hasn't earned his respect from us without a bit of sweat! I guess to answer your question, I would have to say that once we weighed out the pros and cons, the appendicostomy with the MIC key won. Here are my reasons:

1. It is done 4 hours away from home. Follow up and help is a ferry ride away.

2. Dr. Blair has been Marika's surgeon since her diagnosis of IA and colostomy at 10 months.

3. Replacement tubes and buttons are easy to access and close by when necessary.

I would quickly add, however, that what works for Marika will not necessarily work for another child. It is possible that this WON"T work for Marika. We are prepared for that, as well. Dr. Blair suggested that this may be a form of bio-feedback for her, and he doesn't consider this a permanent procedure for her. Fortunately, Marika's prognosis remains good, and Dr. Blair is very hopeful.

If I had a choice between the MIC key and Chait trapdoor, I'd pick the Chait, only for it's low profile and size. However, we have now touched and played with the MIC key a little and feel comfortable with that as well.

I hope I've answered your question. Remember that Jeff and I are new to the cecostomy issue, and so the wisdom and insight of those who have already gone through the cecostomy procedures would be much more conclusive and helpful.

Plain Cecostomy

A plain cecostomy uses a tube that is inserted at the juncture of the small and large intestine, and hangs out of the body 2-4 inches, requiring it to be taped down to the body. Actually, after the tube has been securely anchored (4-6 weeks post op) taping isn't required. although for the younger children, taping maybe desired.

Candidates for a Plain Cecostomy

Marti, MS, RN, CS

I have a very different opinion (than Dr. Pena) about the requirement of achieving bowel management with rectal enemas prior to doing a cecostomy. The patients who have gotten cecostomies (we don't do the Malone) have been incontinent, whether they used rectal enemas or not. Some have been very successful with rectal enemas and chose to have the tube insertion site moved to the abdomen. Some of our families have never tried rectal enemas, CHOOSING soiling over putting a tube in their child's bottom. Some of our families have tried and found it to be detrimental to the parent/child relationship. I take these concerns and choices that these families make as valid as my own. (Putting something unpleasant into your child's bottom is one of the most difficult things we ask parents to do). We do not require that a child "succeed" at bowel management before they get a cecostomy. We consider a cecostomy an alternate method of giving enemas, and let the family choose. A cecostomy is really a way to make the colon serve as an ostomy "bag". If the "bag" doesn't work, you wouldn't use it (and would seek another alternative). Most of our patients with cecostomies did not succeed with rectal enemas (because they wouldn’t do them) and are completely clean with cecostomies. One of the things I've noticed from the antegrade enemas is that they seem to clean out more thoroughly (from above the stool) than rectal enemas. I guess our criteria is chronic constipation and the desire to try the cecostomy. We wouldn't do a cecostomy on a chronic diarrhea patient at this point.

From Bonnie  (Mom to Amy, 10, cecostomy)

We chose the plain cecostomy for Amy for several reasons:

(1) She did not have her appendix. A well meaning surgeon removed her appendix when he closed her colostomy.

(2) To do a Malone type procedure would have meant using part of her small intestine to make the connection from her navel to the colon. I wasn't particularly comfortable with that option and neither was her surgeon. Amy has less than half of her colon so using part of that was out of the question.

(3) We did consider the cecostomy procedure (similar to a Malone) where a small portion of the small intestine is used in lieu of the appendix. Her surgeon would not recommend it.

            There are other reasons to switch to the Malone or cecostomy other than just avoidance of the rectal enema. An antegrade enema is more efficient - washing the colon from the top down instead of the bottom up. It hopefully will also mean that she will be able to spend less time on the toilet waiting for the enema solution to empty. Also, for a girl there is obvious advantages to being able to administer the solution from her abdomen during her periods (when she does start). To give Amy independence in her care. Up until now she was totally dependent on me for her daily enema. That has not only restricted her overnight activities - it has kept her father and I from being away from her. While my mother would do them in a real "pinch" Amy was getting to the age where she did not want anyone other than me to do it.

            I would not think that you would have to establish a rectal enema routine that was successful prior to doing a cecostomy, esp. in a child that tends to be constipated. The routine we are doing now (type of enema fluid, etc.) is very different from the previous so in a way we have started over

From Connie

Dr. Fonkalsrud at UCLA also does not require a successful bowel management program prior to placing a cecostomy tube. I personally know of 4 children who were unsuccessful with bowel management, rectal enemas, etc, that now have a cecostomy tube, they stay clean between "flushings" and as an added bonus, they don't have dietary restrictions.

Information on Buttons and Tubes

From Bonnie  (Mom to Amy, 10, cecostomy)

            Amy had a gastrostomy tube for the first 6 months of her life and that was changed out to a gastrostomy button which she kept until she was 2-1/2. The button was so much better - less stoma problems, leakage, granular tissue build up, etc. - that I felt a cecostomy button would be better than a tube (for Amy). I believe that the button did not give her as much of a problem with irritation since it is placed flush against the skin and since there is less leakage. Also, the tube moved around a lot while the button stays stationary. Amy, has the Chait cecostomy button described at www.cecostomy.com. Amy's surgery was done by Dr. Keith Georgeson at the Children's Hospital of Alabama (Birmingham, AL) (205) 939-9688. (His nurse is Debra Duke (205) 939-5336)The Chait button was developed in Canada and has only been approved for use in the US since late summer (Amy got one of the first ones) so there isn't a list of physicians with experience with this particular design. However, I felt confident that Dr. Georgeson could successfully do her surgery - he is Chief of Pediatric Surgery, has been Amy's surgeon for 8 years and the procedure itself it fairly simple. He did, however, place Amy's button in one step under anesthesia. The literature from Dr. Chait recommends a 2 step process - first a catheter is placed in the cecum and approx. 6 weeks later it is replaced by the button.

            The Chait button is inserted into the colon through a small stoma in the abdomen. The best way I can illustrate it is to tell you that it looks a lot like the valve on a beach ball (honest). It is designed to lie flush with the skin so that it is almost invisible through clothes. It is about 1" x 1/2 " and very slim. Amy's Chait button does not stick out in a noticeable way at all - even under a swimsuit. When needed you open the cap on the top of the "button" and insert a tube to administer the enema fluid and when finished the tube or catheter is removed and the cap on the button is closed. What is unique about the cecostomy button is that it has a cork-screw design internally instead of a short tube with a button under the skin and into the colon. Amy's surgeon said that this should make it more secure than the balloon type and more self adjusting to a child's growth. Rather than being of a fixed length it has a "pig tail" at the end the tube that is under the skin. Think of a coiled phone cord. Should Amy gain weight the tube will just stretch itself out as needed. It is my understanding that changing the button when it is necessary (due to the button wearing out) is no more complicated than changing an earring in a pierced ear.

            The "Chait" Trapdoor button and catheter are distributed/manufactured in the US by Cook Incorporated - Bloomington, Indiana - 800/457-4500, Fax (800) 554-8335 or www.cookgroup.com. It was approved for use in the US in July of ‘99. Amy got the first one in the US. Dr. Chait has asked Amy to post her story to his web site and we've been negligent about getting it done. I asked him if it would be OK with him for Amy to correspond with potential patients since she had such a different procedure and his response was that he is comfortable with both methods of placing the button. What's important is the final outcome.

            The problem with the traditional g-tubes (MIC Key type) is that for some children who have them as a g-tube or as a cecostomy they can face having the tube changed several times a year. Also, the opening required for them is much larger and that has it's own set of problems.

            The only down side I could see to changing mid-stream from the MIC key button to the Chait is that the Chait is significantly more narrow and the opening your son has now would probably have to close up some for it to fit snugly. That would probably require the removal of his MIC Key button and waiting a few days for the stoma to close up some and then inserting the Chait button. You would have the weigh the pros and cons of that.

From Teresa

For more info you can contact Helen Richards at Sick Children's Hospital in Toronto. Her tele # is 416-813-6036/pager 416-375-5337. She works as a nurse in interventional radiology with Dr. Peter Chait. I met with her this week and she gave me a book/pamphlet explaining the procedure and the device(Chait Trapdoor).

From Anna (Mom to Rissy and Alo)

I searched the internet and found this site where they have an actual picture of the trapdoor catheter in a patient's tummy. If you want to see it, here's the webpage... see figure 28. http://www.cecostomy.com/Health_Care_Providers/hcp_frames_contcare.htm

From Jane D. (Mom to Ty)

            The MIC KEY is actually used for feeding. It looks a lot like what you would blow up a floating device for the kids in the pool. It doesn't stick up that much, maybe 1/4" and is maybe 1 1/2" long. His was placed right above his waistline so his pants do not bother it. He does everything the other kids do, rolls around on the floor, scoots around on his stomach, plays sports, and hasn't had a problem. It opens and closes very easily. We attach a tube to the button by pushing the tip into it and giving it a little twist to lock it in. The tube is big enough that we can get the 300cc pushed in quickly, about 1 min. Ty opens and closes it and tries to help push but his hands are still a bit small for the 60cc syringes. I asked his dr. about the Chait, but it was approved in the US just days before he was scheduled to get the MIC KEY and his dr. knew nothing about it or how it worked. She said after she does her own research on it, she might consider doing them in the future but was sticking with the MIC KEY since she knows they are successful.

            Before placing the MIC KEY, Ty had a tube. Ty had about 3" of a broviac catheter coming out about 2" above his belly button. It was not very big. It didn't bother him one bit. We just kept it taped down and didn’t have a problem. I do know that if appearance is a concern for someone, this can be seen but we figured he'd have a shirt on most of the time, except for swimming maybe. If it didn't bother him, then I really don't care what others that see him think. If they don't like it, then they don't have to look at him. :) We liked the tube but think the button is really easier to take care of and to use. It does need to be changed, maybe every year or so but that is done right in the office. Deflate the balloon full of water, remove it and replace with a new one.

From Babette (Mom to Michael, 4, HD)

The tube is a broviac catheter placed in the cecum, run up the abdominal wall and exists somewhere on his tummy. Where it comes out varies from person to person. Initially, Michael's tube came out at the same place his colostomy was, now it is located just under his waist band. The tube is low enough to stay in his undershorts. "How does to tube work?" The end of the catheter has a leur lock system on it. There are threads on it, you screw on a plastic cap when you're not using it, unscrew the cap, screw on syringes, flush in the fluid and screw the cap back on after you've flushed in all the enema fluid. The enema solution runs through the tube, cecum and on down through the bowel....it's an antegrade enema. .

Description of Surgery

From Connie

Here is a new web site for those interested in more information regarding the cecostomy procedure.

//www.surgery.medsch.ucla.edu/divisions/pd/pd_fecal.htm

From Babette (Mom to Michael, 4, HD)

Michael's placement of the cecostomy catheter was not in the x-ray dept. His surgeon had to make a small incision (2 inches) in the abdomen to place the cath. in the cecum properly. He did take some sort of films to double check that there was not any kind of leaks, and the cath. was placed properly. All of this was done in the OR. Now, he has had to have the cath. replaced which did not require opening him up. He used a guide wire, but again this was done in OR, and again x-rays were taken to ensure proper placement. He was able to replace it in this manner because it had not come completely out. The whole thing to place the cath. originally took about an hour, to replace it was 20-30 minutes.

From Jane D. (Mom to Ty)

            Ty got his cecostomy tube at UCLA by Dr. Eric Fonkalsrud. We were very impressed with him and his knowledge of IA and the cecostomy. We had several long conversation before making the trip out. He's a very sweet dr. Dr. Fonkalsrud wrote a very nice article explaining the cecostomy. It's in the Oct. '98 issue of the American College of Surgeons

            Ty needed no bowel prep, had the surgery on a Tues, was using it on Wed., left the hospital on Thurs. and was at Disneyland on Sat. Unfortunately, he had trouble this summer with the heat and granulated tissue and lost the tube but got the MIC KEY button and we love that too. It works great. Dr. Donna Caniano in Ohio did the surgery. He needed a bowel prep for that on a Sun, surgery on Mon. and was using it and home on Tues. He's had great success with both. He's been clean and only spends about 10-15 mins. on the toilet. Sure beats that hr. with the enema.

Marti, MS, RN, CS

Our procedure takes about an hour in the operating room. The kids go home in about 3 days. The worst part is the 24 bowel prep the day before surgery, because most of them have been very constipated for a very long time.

From Bonnie  (Mom to Amy, 10, cecostomy)

Amy has the Chait trapdoor. It can be inserted in two different ways. Amy's was done as a surgery - better for her since she has lost over half of her colon due to earlier surgeries. Her surgeon had to make two incisions so that he could pull her colon down to below her waist and then one to actually place the button. Even with that she was only in the hospital 3 days. Dr. Chait, who is a radiologist, does the button in two steps. First step is the placement of a tiny catheter. Approx. 6 weeks later the catheter is replaced with a button. Using his procedures it is done as a radiological procedure. Follow up for Amy has been minimal. She went back a month after surgery and was checked.

Results with a Plain Cecostomy

Marti, MS, RN, CS

We have done mostly IA kids, most with poor prognosis for continence (almost all of ours have some sacral/caudal agenesis). Cecostomy tubes are fairly new. We have 12 kids now with cecostomies, all are extremely happy with it. We started doing them in October, 1996, so some have had them for 1.5 years. Other than the irrigations, we do not have them do anything . None have failed to become continent.

Risks/Complications of Plain Cecostomy

Marti, MS, RN, CS

There are risks with any surgery, the cecostomy device is a foreign body in the bowel. We have not seen any major problems with this so far. The problems we have are the same as with gastrostomy tubes; skin irritation, leakage, and granulation tissue.

From Babette (Mom to Michael)

The area around the c-tube does in fact get irritated. I simply wash it nightly with Hydrogen Peroxide. This will usually take care of it. If it doesn't, I start "painting" it with Mercurochrome. When his tube has been tugged at (this happened once, now we keep it taped faithfully) it got infected, a course of Keflex coupled with the above did the trick. After 2 years with this c-tube we've never used Silver Nitrate.

Complications and Granulation Tissue

From Sandy (Mom to Kevin, 4yrs..)

Kevin was scheduled for the cecostomy on July 17 of this year. After the procedure we met Dr Chait (of the Chait Trapdoor) and he said everything was exactly where it should have been and the procedure couldn't have been easier. Unfortunately Kevin’s bowel didn’t think things went so well and his intestine paralyzed for a couple of days which resulted in Kevin vomiting every couple of hours. To stop the vomiting a nasal/gastro tube was inserted in through Kevin’s nose and into his stomach. The insertion of the NG tube was the worst part of the whole week in the hospital. Two days later the NG tube was removed and Kevin was able to eat. He had eaten nothing for 9 days and was absolutely fantasizing about food all the time. So the 2 days in the hospital turned into 7 days but basically everything went well. Now at home we attach the tube up to a gravity set and pour through about 350 ml of enema phosphate and salt water. Kevin watches TV or plays Monopoly during his “Big Flush” which takes about an hour. He gets cramps during the flush and asks us to rub his back but he doesn’t seem too uncomfortable. Our only problem at home has been “hyper granulation” of the skin at the site of the cecostomy. The nurse has reassured us that this is more of a nuisance than anything. The bubble of skin that looked so sore and oozy a couple of weeks ago is looking better and better as we treat it with lots of air, salt water baths, and trips to the public pool. Before school starts for the Fall Kevin’s tube will be changed for a Chait Trapdoor, which is like a plastic cuff link that sits on the top of the skin. It is much smaller and I think I will feel less worried that Kevin is going to accidentally pull it out. The relief we feel is unbelievable. I hadn’t realized what stress we were under having to worry about diapers, rash, accidents, etc., for a 4-year-old. Now we just have to get the Big Flush into our daily schedule and keep Kevin sitting still throughout it!

Update Posted on Oct. 18th, 2000

We have just come back from a trip to our cecostomy support nurse at Sick Kids in Toronto. She thinks the trouble with Kevin's tube site may be that he is just too small for it. He is a skinny minny 4 year old with a full-size Chait trap-door in his cecum! This makes sense because the trap-door is always kind of hanging out of him by about 1/2 inch (that is when he doesn't have hyper granulation). It rubs on stuff and gets caught in his underpants, etc. She suggested we tape it so it is flush with his skin and see if that helps. For some reason this new information is a great relief to me. We will just try to manage his tube site and wait for him to grow. We have an appointment with a dermatologist next week . I have said this before and for what it's worth, if it wasn't for this tube site problem I would think the cecostomy was the greatest thing in the world. If in time we find that he grows into the device it will be absolutely amazing!

From Debbie, mom to Lydia 6yo, ready for a new cecostomy tube

Lydia has the Chait cecostomy button. During her flush yesterday, she became almost unglued. Had to

scrape her off the ceiling, she was vomitting and in considerable pain. Nothing different happened in the

whole routine. We use gravity to infuse the saline mixture, her diet, and routines were all unchanged. She

perched up on the toilet (her feet on the seat) and expelled most of the solution--but how can you tell?

 

I called her pediatrician who had us go right to the Children's ER. Of course, by the time we got there Lydia

was almost her usual perky self and I felt like an idiot. But they found blood in her stool. Hours later, they

discovered that the tube had migrated into the small intestine. So I had inadvertently infused 600 cc of

saline into her small intestine. Luckily nothing ruptured. We will have the tube replaced today.

 

I was told that doing something like this will mimic the symptoms of a small bowel obstruction (which was

what we were seeing) and the only reason the symptoms didn't persist for Lydia is that she was able to

squeeze most of the solution out. And rupturing the small intestine can be life threatening. (This may be a

reason to use gravity rather than syringes.) I have no idea how frequently these tubes migrate into the

small intestine, but it is something to tuck away for future reference. I will ask today.

 

And a plug for Kaiser, our HMO--they were great. No test questioned, called in every specialist we needed.

The Kaiser doc himself came in and told me that he would not let a Resident or Med Student near my

daughter.

 

They discovered the problem with fluoroscopy, by instilling a little contrast medium into the tube to see

where it was. The standard X-rays just confirmed that there was a problem with her bowel, not what was

wrong. (Of course, they did this ready to transfer her to the OR just in case they found that she had

ruptured and would need to operate ASAP.) You would not believe the number of professionals huddling

around Lydia, who was smiling, chatting, happy as can be.

 

If I get any sort of answer about the risks of the tubes migrating and/or other symptoms to watch for, I will

post them.

 

From Betsy (Mom to Matt)

My son, Matt (age 12) has had his Cecostomy since April. He continues to get granulation around the button. It's like a small polyp. The dr. has given us silver nitrate which we apply when it starts to get a little big. The silver nitrate immediately kills the skin that it touches, so it gets rid of the granulation. The only thing to be careful of is not getting the silver nitrate on healthy skin. Matt says that the granulation does not

hurt.

From Bonnie  (Mom to Amy, 10, cecostomy)          Amy is getting a small amount of granulation tissue around her cecostomy button. It does not seem to bother her at all.

            Approx. 8 months after receiving the cecostomy, Amy developed some granular tissue at the stoma site. That was treated with some steroidal cream. We used a powder made from ground medication used to treat ulcers to prevent new irritation. The cream we used first - to get the tissue to stop growing/go away - was Triamcinolone Acetonide Cream USP , 0.5%. We applied it around the stoma with a Q-tip 3 to 4 times a day for 10 days. I was amazed at the results. The powder is Sucralfate 1 gm tablets that I grind into a powder using a mortal and pestle. I dust the powder around her button every morning. It probably would be even better if we also did it at night after her bath, but I haven't been very good about remembering to. Since it's not bothering her now we just let it go.

From Jane D. (Mom to Ty)

We have some experience with the cecostomy and granulated tissue. Tyler got the cecostomy tube last Nov. and this was our first experience with it. It occurred on occasion around the site but a touch of the silver nitrate stick cleared it up. Then in June, for some unknown reason, something went wrong. He didn't get an infection but when it got really hot, 90's and above for weeks, the granulated tissue wouldn't respond to the silver nitrate but kept getting worse. I had to wonder if it had to do with the heat and that he sweats terribly. It got pretty bad and it was decided the tube needed to be removed so the skin could heal and we chose to replace it with the button. Not the new one but the MIC KEY button. The new one was just approved the week Ty had surgery. We need to use the silver nitrate around the button every once in awhile, no big deal, but he also got some, for the first time, in a 2 month old incision. It looked at first like a blister, but it wasn't. Once we figured out what it was, the sticks cleared it right up. I thought granulated tissue formed mainly around "foreign objects" like the tube or button. I wondered if anyone had trouble with it around the Malone site. I would think if it could occur around a healed incision, then it could occur around the Malone. I wondered how that would affect inserting the catheter? The granulated tissue isn't uncomfortable for Ty, but the silver nitrate burns for a second when you touch the skin. He handles it very well. If the tissue that needs the silver nitrate isn't "moist" then you need to wet the tip of the stick. We didn't do that once and it REALLY burned. Once we wet the stick, he did fine again.

From Debbie (mom to Lydia, 6yo)

Lydia has the Chait cecostomy button. During her flush yesterday, she became almost unglued. Had to scrape her off the ceiling, she was vomitting and in considerable pain. Nothing different happened in the whole routine. We use gravity to infuse the saline mixture, her diet, and routines were all unchanged. She perched up on the toilet (her feet on the seat) and expelled most of the solution--but how can you tell? I called her pediatrician who had us go right to the Children's ER. Of course, by the time we got there Lydia was almost her usual perky self and I felt like an idiot. But they found blood in her stool. Hours later, they discovered that the tube had migrated into the small intestine. So I had inadvertently infused 600 cc of saline into her small intestine. Luckily nothing ruptured. We will have the tube replaced today. I was told that doing something like this will mimic the symptoms of a small bowel obstruction (which was what we were seeing) and the only reason the symptoms didn't persist for Lydia is that she was able to squeeze most of the solution out. And rupturing the small intestine can be life threatening. (This may be a reason to use gravity rather than syringes.) I have no idea how frequently these tubes migrate into the small intestine, but it is something to tuck away for future reference. I will ask today. They discovered the problem with fluoroscopy, by instilling a little contrast medium into the tube to see where it was. The standard X-rays just confirmed that there was a problem with her bowel, not what was wrong. (Of course, they did this ready to transfer her to the OR just in case they found that she had ruptured and would need to operate ASAP.) You would not believe the number of professionals huddling around Lydia, who was smiling, chatting, happy as can be. If I get any sort of answer about the risks of the tubes migrating and/or other symptoms to watch for, I will post them.

Life with a Plain Cecostomy

Marti, MS, RN, CS

            Our experience with antegrade enemas is that at first the kids have to sit on the toilet from 45- 60 min to get completely empty. It's my guess that the bowel actually shrinks down and works better after staying clean for awhile. We collected lots of information early on- by about 6 months most of our kids were sitting on the toilet 30 minutes, and were starting to do the irrigation every other day. At a year post cecostomy, they report about 20 minutes total time, every other day. They all are completely clean in between.

Our children with cecostomies do only one thing: every other day they sit on the toilet and flush the Mic Key device (which we have placed into their cecum) with a mixture of salt and water and sometimes some soap or glycerine. It takes about 30 minutes. There is no diet manipulation, no medications, nothing else. They only give themselves an enema from "above" every other day through the tube device. I need to change their device every 3-6 months. The kids who are 6 and older are usually OK with the change, the younger children who are frightened by the procedure get Versed beforehand and don't remember it at all.

            One of our patients who has no sacrum, caudal agenesis, and a bladder that doesn't work is able to stay completely clean with daily flushes of GoLytely.

From Bonnie

            Amy uses a mixture of glycerin and tap water. Saline is what was recommended but for some unexplainable reason saline does not work well for her (even when we were doing rectal enemas). I buy the glycerin in 4 oz. bottles in the hand cream section of the drug store. She starts with 20 ml of glycerin mixed with 100 ml of water. She uses 2 oz. catheter tipped syringes to put it through the tube that attaches to her button. She then sets a timer for 10 minutes to let the glycerin "work" - glycerin causes the colon to contract. When the timer goes off she then does another 480 ml of water (8 syringes at 60 ml each) as a flush. She usually has to sit for another 20 minutes or so until she feels like she is empty. On the glycerin - we started with 10 ml with 90 ml of water and gradually increased the glycerin/water mix until we found the right combo for her. Amy only has about 1/2 of her colon due to previous surgeries so any amounts we use may not be applicable to others. However, the surgical group in Iowa that her surgeon's office consulted with (they have been doing cecostomies for several years) say that they have success with the 10/90 or a 15/85 ratio most of the time. That certainly was not our experience. I also found that the glycerin needed to be increased gradually as Amy experienced some nausea and/or cramping at first. This might also be attributed to her lack of experience with the sensation of having her colon contract. Amy also seems to have a very sluggish colon - for which we are grateful - otherwise, this might not work for her at all. By all accounts, she should have problems with diarrhea, not constipation.

            They recommend that everyone starts with 10 ml/cc of glycerin mixed with 90 ml/cc of saline. I understand that someone with a colon of normal length may have to wait up to 15 minutes for it to "start" (at least at first). For Amy it starts almost immediately. If after a few days you do not think that you are getting the colon completely clean (having accidents) then you increase the glycerin by 5 ml/cc and decrease the saline accordingly so that you are always using 100 ml/cc total. You can continue that process until you get to the right mix for you. I do not know what would be the maximum amount of glycerin that would be recommended.

From Jane D. (Mom to Ty)

            We too found saline alone didn't work on Ty. He needs the glycerine to help clean him out. We have a prescript for our glycerin, buy it at the pharmacy in little packets, and our insurance will cover it. We get a 50 count box of 1/3 oz packets of liquid glycerine or castile soap. This box will last us months and cost us only $5.50 which I'm able to submit to insurance as a needed item or supply if I want. But for that amount, it's sometimes just easier to pay it and forget it. This works great for us since this premeasured 1/3 oz. is the amount we use with the 2000 cc of water and 3-4 tsp. of salt for his solution. We mix it up and put it in a rubbermaid container and use 300cc as needed. It's nice to have it premade. No mixing and measuring when we're busy getting ready for school in the mornings.

            Do you let the water run in with a tube and bag or do you use syringes?? We used syringes with the cecostomy tube and he did fine. When he got the button, they gave us the tube and bag to let the water gradually run in. It took much longer and didn't work well for us. We switched to syringes and he's back to staying clean. He needs that extra "push" of the syringes to get things moving along. Ty sits 10-15min. for 300 cc. If Ty moves around likes bends over, leans side to side, maybe stands up once or twice or rubs his stomach, things move along much faster.

From Betsy (Mom to Matt)

My son, Matt (age 12) got his Cecostomy button in April (currently August). He needs to sit for about 30 minutes afterwards. I think a lot depends on the amount you are flushing with and the size of the child. Matt flushes with strictly saline solution. He uses about 450 cc's. It takes about 3 minutes to flow through the tube and into his large intestines. Most of what is going to come out, comes out right away, but it usually takes about another 25 minutes before he is clear. The whole process has become quicker and more efficient over time.

Malone Procedures (also called Appendicostomy)

What Is A Malone?

Excerpted From New Developments in the Management of Fecal Incontinence by Dr. Pena in PTN News Vol. 4, #3 Fall of 1995

During the last two years, we have been performing a surgical procedure designed by Dr. Malone from England. The procedure was designed to improve the quality of life of children who require daily enemas to remain clean and to be socially accepted. The procedure uses the cecal appendix, commonly known to most people as "the appendix",. The cecal appendix is a very small and narrow blind pouch of the right colon. During the procedure, the appendix is connected to the abdominal wall with a one-way valve mechanisms which allows the patient to sit on the toilet, pass a small catheter through a small opening in the abdomen and irrigate his colon. This irrigation is now done in an anti-grade manner, which means that the water runs in the most natural direction, towards the anus. This allows the patient to clean his colon without performing any rectal maneuver. Many normal individuals no longer have an appendix due to appendicitis surgery. For these patients it is possible to make a new appendix to perform the same operation. At our institution we have performed eleven of these operations. In general, these patients have been very pleased with this procedure. Most of the time we can connect the appendix to the umbilicus (Belly-button) and in this way, it becomes an invisible opening in the abdomen. The operation is relatively simple, it takes approximately 2-4 hours and an admission of 3-4 days.

Candidates for a Malone

From Karen B. (Mom to Sammy)

Dr. Pena's approach is that you must proceed in a rationale and logical manner. You start with diet, laxatives, etc. If that doesn't work, you try enemas. If enemas don't work, you revert to an ostomy. The Malone is simply an alternative route, not a different one, to a rectal enema. If cleaning out from below does not work, then neither will from above. Pena, in Continent Appendicostomy for fecal incontinence, Journal of Pediatric Surgery, November 1997 says, "One must realize that this procedure is not a cure for fecal incontinence; rather it is a way for children to live happier lives. As such, children who are successfully managing their fecal incontinence rectally and remain relatively satisfied with this lifestyle should not necessarily undergo this procedure.

            In an article, How to achieve a successful Malone, Curry et al, Journal of Pediatric Surgery, January 1998, the authors say "All other conservative methods of treating these conditions should be exhausted before undertaking such a procedure because it is not without its complications." They also indicate that the failure rate for children under 5 years of age is 70%, and only 25% in those above 5. Another article, The Malone Procedure: Early Experience, Wilcox et al, Journal of Pediatric Surgery, February 1998, says "essential for the success of the Malone procedure is proper patient selection. Three important criteria that need to be fulfilled include: an appropriate anatomic situation, adequate dexterity and mobility, and most importantly, a patient and family who insist on being clean." It goes on to say that there are two anatomic factors that are crucial for success, the first is an adequate length of colon which provides a sufficient reservoir (all the articles I have read say that long segment HD is not a good candidate for this). There should also be no distal stenosis impairing the washout, which will result in lengthy enemas and soiling. "

Results with a Malone in the Literature

Excerpted From The Malone Procedure: Results in a Series of 20 Patients by Karen B. in PTN News Vol. 6, #2 May 1997

            In a new article, Continent Appendicostomy in the Bowel Management of Fecally Incontinent Children, Drs. Levitt, Soffer, and Peña describe their experiences with the Malone procedure, in which the appendix or neoappendix is used as a way to administer enemas without a rectal maneuver. At least 30% of children with anorectal malformations will be fecally incontinent after corrective surgery. In addition, approximately one-half of children with spina bifida suffer from fecal incontinence as do some children with Hirschsprung's disease and intractable constipation.

Study Group

            Between July 13, 1994 and November 1, 1996, 20 patients underwent the continent appendicostomy procedure; 19 of the patients were children ranging in age from 3 to 16 years at the time of operation. Overall, there were 13 males and 7 females in the study group.

Etiology of Fecal Incontinence........20 patients

Anorectal Malformations........16

Spina bifida........3

Hirschsprung's Disease........1

Chronic constipation........1

* one patient had both spina bifida and an anorectal malformation.

Cleanliness

            Nineteen of the 20 patients are completely clean 24 hours a day with no episodes of soiling. One patient who continued to soil also has a suspected hypermotility problem and was never clean even when he underwent daily rectal enemas. He is the only patient to have his appendicostomy closed and continues to fail conventional bowel management. One other patient reported leakage of fluid through the rectum (not feces) several hours after the administration of the enema, a problem that subsided spontaneously.

            Three patients rarely use the appendicostomy because they began having voluntary bowel movements postoperatively (two of these patients had their posterior sagittal repairs redone at the same time as the appendicostomy procedure; one had chronic constipation and began having voluntary bowel movements after the appendicostomy). Each of these patients has chosen to keep the appendicostomy open and irrigate when necessary and none report any problems with the stoma. Most of the children are able to catheterize themselves, which is an additional advantage over rectal bowel management.

Postoperative Complications

            Five postoperative complications arose that could be attributed to the surgery itself. In one patient, the stoma became closed. The umbilical stoma was refashioned, and the patient is now completely clean. Another patient had stomal stricture with inability to pass the catheter. The stoma was revised two months later and has remained open for more than a year since the operation. This patient is also completely clean.

            Three children suffered from leakage of stool from the appendicostomy site. In all three instances, this complication arose at a time when the child developed very loose stools for reasons such as gastroenteritis. The parents of two of the children opted for surgical repair of this problem, and both children are now completely clean and their stomas no longer leak stool even during episodes of diarrhea. The parents of the third child who was leaking stool from the stoma opted not to have surgery and this problem has resolved spontaneously.

            One patient had a dermatitic rash in the region of the stoma due to the wetness produced by mucous from the appendix. Several ointments tried in an effort to solve this problem achieved some success. However, the patient (adult) decided to have his appendicostomy closed, which was done. Another patient continues to have difficulty passing the tube, but there is no evidence of stricture on physical examination, and the tube passes quite easily in the physician's office. One patient suffered a very unusual and unexpected problem when the catheter developed a knot inside his cecum and he was unable to remove it. We elected to cut the tube at the level of the skin and the remainder of the tube was expelled uneventfully with the fecal stream. Finally, one patient was hospitalized one month after the surgery and diagnosed with intestinal obstruction, which resolved without an operation. The patient was discharged 4 days later, and we do not know whether the continent appendicostomy procedure was responsible for this hospitalization.    Level of Satisfaction

            Of the 14 patients who were surveyed, 13 (93%) noted a level of satisfaction of good to excellent. Generally, the procedure has improved self-esteem and confidence among these patients, especially the older ones who face added social pressures. One 9 year-old remarked that her grades in school have improved from "C"s to "A"s and "B"s solely as a result of this procedure. Even the three children who rarely use the appendicostomy (they now have voluntary bowel movements) are happy with the security in knowing that it is available if needed.

Discussion

            The results of this procedure have been very satisfactory. Continued follow-up is crucial since other series have noted several late complications. Our one patient who continued to soil underscores our belief that the continent appendicostomy should not be attempted in those patients who have previously failed traditional rectal bowel management. We use the technique only to change the route of enema administration to an easier and more efficient one. One must realize that this procedure is not a cure for fecal incontinence; rather it is a way for children to live happier lives. As such, children who are successfully managing their fecal incontinence rectally and remain relatively satisfied with this lifestyle should not necessarily undergo this procedure. Nonetheless, many children, especially as they grow older and enter adolescence, are candidates for an appendicostomy. Our placement of the stoma in the umbilical fold, rendering it virtually unnoticeable to others, is an important factor in maximizing body image in a very self-conscious age group. That they can catheterize themselves without parental or other aid is also particularly important.

Karen, mom to Sammy, (almost 4!!), cloaca, etc.

From what I understand, the appendix is definitely the first choice for the Malone procedure, but they haven't had any complications from using bowel tissue as well. If the native appendix is absent, they create a neoappendix from a flap of cecum. Other than leaking during episodes of diarrhea, no other complications were reported (in Pena’s article referenced above) as a result of using a neoappendix,. The leaking could be fixed surgically.

From Teresa, mom to Caroline (6, DS, IA)

Both Kathy & Dr Reyes said gut tissue is always better than having to resort to an artificial plastic tube. The appendix is best because it is already in the shape of a tube. Both presented Dr Pena's data and he has not had any surgical complications. They said that they are now recommending the appendix NOT be removed prophylactically since it may be useful later in the child's life for Malone or Mitranoff or both. The deal with rolling up some other gut tissue to use as a channel did not seem as well studied. .

Excerpted From Trends and Directions by Dr. Pena in PTN News Vol. 7, #1 Feb. 1998

            Malone himself, in our last meeting in Turkey, presented his results and 38 of his patients are not clean after the Malone procedure. They did not try bowel management first because they do not have a systematic approach to bowel management like we do. It is not that the operation failed, it is that they did not select the patients properly. The Malone procedure is just another way of giving an enema. It is another route - there is nothing magical about it. You still have to work at selecting the kind of enema, the time of the enema, the concentration of the enema, the technique of the enema.

            The appendix is connected to the belly button.. We don’t want the patient to leak, so we create a valve - we surround the appendix with the bowel to avoid leakage. About 10% of our patients leak, so we had to go back and tighten the valve. If you make the valve too tight, then you can not pass the catheter. If you make the valve too loose you will leak, so it is a delicate balance.

When To Do a Malone

From Cheryl (Mom to Scott, HIA, 5, Malone)

Kathy Guardino, Dr. Pena's nurse, said they are doing the Malone's on kids as young as 3.

Descriptions of the Malone Surgery Stay

From Debbie

If you want to see how an appendicostomy is done step-by-step, go to this web page. It is really interesting. Most of it is diagrams, but there are some actual photos (may not be suitable the squeamish). http://www.Vesalius.com/graphics/cf_procedures/appy_neoappy/cfpr_appy1.html

Excerpted From Vova’s Malone Procedure by Debra Staples in PTN News Vol. 5, #5 Dec. 1996

Vova’s (age 6) Malone was done by Dr. Pena at LIJ. The lower bowel is resituated so that the beginning end can be attached to an opening in the belly button through a specially created one-way valve usually made from the appendix. Vova was admitted the day before surgery for bowel prep which included drinking a gallon of Go-Litely in 4 hrs. Vova was not allowed to eat or drink all day on the day of admission and for 24-48 hrs. after the surgery (to avoid vomiting). The procedure typically takes 2-4 hrs. Vova had significant scar tissue that had to be removed before the appendicostomy could be completed. The day after surgery Vova was able to get out of bed 2-3 times and took some short walks. We found that it helped to have him count “1-2-3” before we helped him move. That way he had some control over the pain felt in his abdomen area. The following day Vova was allowed to have a clear fluid diet (jello, ginger ale, flavored ice, and broth). On that day he also made several trips to the playroom. The criteria for discharge was to be walking around, no fever, and eating a regular diet. The entire post-surgical period, (Tues.-Friday in our case) required an I.V. for antibiotics and nutrition/hydration. On Friday, he ate normally and was discharged Friday evening.

            Dr. Pena wanted to see Vova in two weeks to show us how to access the opening as well as remove the single stitch he used for the incision. The opening could not be used for bowel irrigations for about 2 more weeks after that. We ended up having the follow-up appt. with Dr. Pena on the following Friday, 10 days after surgery. For us, the entire experience required a 2 week stay in NY. At that appt., Dr. Pena accessed the opening with no difficulty and Vova experienced no pain. Dr. Pena explained to us about the types of problems that have occurred in some patients, such as the opening becoming too narrow or too large. We were given a special bag to use for the enema solution (the same solution as we were using before) as well as several very narrow catheter tubes that attach to it. The tube is used to insert into the opening (only about 2 inches or less is to be inserted) and the special bag allows the solution to flow at an acceptable rate. We have been using the opening for about 6 weeks, and it is wonderful. Vova has no pain as he often did with traditional enemas. I have been using about 1000mls, whereas before if I used more than about 450 mls, Vova would have a lot of pain in his stomach. Even the catheter balloon, upon inflating, would sometimes cause pain. With this method, we don’t have to worry about the catheter balloon breaking up and other mishaps. It is faster because it is all done in one step right on the toilet. Another advantage is that we can add the undiluted Fleet solution first, which for us seems to do a better job of stimulating the bowel. (We used to mix it with the saline.) After the Fleets starts things happening, we add the saline. The whole thing now takes about 45 min. I put a small piece of tape (3M hospital tape) over the tube by the belly button because Vova sometimes moves around so much during this time it can come loose or out. Another big advantage is that it seems to do a better job. As long as Vova avoids popcorn, carrots, etc., he will be clean the next day.

From Cheryl (Scott's mom, 5yrs, HIA & Malone)

To recap Scott's Malone & Prolapse surgery. The golytely was not as bad as the NG tube itself. If Scott knew how to swear he would have easily inserted them into his reply after the resident put the NG tube in, "GET THIS TUBE OUT OF MY NOSE RIGHT NOW!". As it turned out the resident didn't even get it down far enough and it had to be shoved lower into his stomach and retaped hours later. Scott wasn't a happy camper and neither was I. Scott actually sat on a portable toilet for the first round of the golytely while he watched a video. It wasn't much different than when he gets an enema.

            The surgery was suppose to last a min. of 2 1/2 hrs. It lasted 5 1/2hrs due to 1 1/2 hours just to get rid of the adhesions due to prior surgeries. This is unknown before actually going in. Dr. Pena is almost like a plastic surgeon. The incisions are so much better than Scott's previous scars. Dr. P was able to use Scott's "pink, long, healthy appendix" for the valve. His belly button looks great. Unless you were looking for it, you wouldn't notice the spot.

            One thing I thought would be unbearable was Scott not being able to eat or drink for 7 days. We were told not to even drink in front of him. I knew this concern was needless when Scott looked up at this IV bags and one was almost empty he replied "now what am I going to eat?" I personally think he loved not being hassled about what and how much he was eating. I was able to drink tea & coffee in front of him--he had no interest in it, although I never ate in front of him.

            The RMD house was great. We actually met a family that lives 20 minutes from us whose baby is 15months with IA. It's funny, at home our paths had not crossed, but at the RMD house we were like old pals. After 2 1/2 weeks, I felt like it was a home away from home. Scott and I even did Manhattan twice. Once I carried him about 98% of the time and the other we borrowed a stroller from the RMD house.

            Now we're back one week (3 weeks post op) and the last three days we've been fighting the sore bottom stuff. Dr. Pena has Scott on Senokot each night and Scott's stools are normally loose & soft. Poor guy--he also hates to wear a pull-up, but he's been choosing shirts that are extra long. We can begin our old enema routine one week from tonight. Yeah!!!! We will return to NY on July 6th to learn how to access our new "spot". Can't wait!

From Amy (Mom to Katie, 3 yrs.)

Katie had her malone surgery today. I guess I shouldn't be but I'm amazed that NO ONE at the hospital seems to know what that is, we've been educating everyone all day, nurses, residents, medical students, child life specialists... Everything went well, her surgeon had kind of waffled about where he was going to put the stoma, in the belly button, in the right abdominal wall, and he finally ended up in her belly button. I do have one question, he told us that he tacked her Cecum up to her abdominal wall, has anyone heard of that before. Basically he said first of all he needed to get access to it and needed to know where it would be to do the work and then he wanted to releive the stress on the newly formed artificial appendix that he built. I don't have a problem with it just wondering. She has that horrible ng tube hooked up to suction, but so far there hasn't been anything in it, so hopefully there still won't be anything there when I get back in the morning and they can pull it soon, she wants to drink badly.

From another note:

Katie does have a tube in place to hold the Malone open, her surgeon expects to leave it in place for about 3

weeks but I expect it to be longer, usually his estimates don't end up being the true time frame, but that's

fine, it's not really bothering her. She doesn't appear to be sore except when she tries to

walk up stairs or sit up from a laying position.

Surgical Technique

From Nova

Pena uses a technique that seems to take "Malone's" idea one step further. He stitches part of the cecum around the neck of the appendix to create a non leaking valve. Since the inner walls of the appendix are not lacerated by this approach, I am assuming that they will never adhere to each other. Rather they just pinch tight to seal off from fluids flowing out until a catheter (#8 feeding tube) is passed thru. I can send you the article Pena wrote about his technique. I also shows a very explanatory picture (worth a thousand words). . I know that going into this, my biggest worry was "will it leak". It does not. And it looks like his belly button always did - it looks like a belly button.

Experience of PTN Members

Excerpted from Malone Procedure Survey in PTN News Vol. 7, #4 Nov. 1998

Michael Maffei. Malone by Pena at age 5, currently age 6 Post Malone, 500 ml. of saline (2 tsp. salt in 500ml. water), no accidents except for flus. Michael helps administer the antegrade enema.

Scott McAllister, Age 5, Malone by Pena, Pre Malone - 1/2 adult Fleet with 400ml. of saline (2.5tsp. salt and 1.5liters water), taking 45-75 min. Post Malone - 1/2 adult Fleet with 500-600ml. saline (same concentration as before) taking 35-45 min. Administered after dinner. Accidents were 1x/week before the Malone and once every 3 weeks after. Scott helps administer the antegrade enema.

Michael Iwanenko, Age 20, Malone by Pena, at 19 Post Malone the process takes 1 hr. He had no accidents before or after the Malone.

Alisha Barron - Malone performed by Pena at age 7, currently age 10. Prior to the Malone she had 4-5 accidents per week and did a daily Fleets enema. Post Malone she uses 1100ml. normal saline. It takes 45 min. and she stays clean for 48 hrs. She has had 3-4 accidents per year. She did have some leakage after the Malone due to the salt and water concentration - the salt needed to be decreased.

Vova Staples - Malone performed at age 6 by Pena, currently 9. Tendency to be loose. Pre Malone 3 accidents a week. Used 500ml saline and 1/2 adult Fleet. Post Malone 1 accident per week and 1000ml. of saline.

Christopher Esposito - Age 11, Malone by Dr. Moneer Hanna, tendency to be loose, The appendix was punctured twice and his appendix was extremely short, so we had to let it close up on its own. We never really got a chance to use it properly.

Anonymous - Malone at age 10 by Pena, now 11. Tendency to be loose. Pre Malone a few accidents per week. 1/2 adult Fleet and the rest saline. Post Malone - accidents are very rare. She uses 1/2 adult Fleet and 175ml. saline. After the Malone, the small opening in her navel began to heal shut after a couple of weeks. We were told that was pretty common and sometimes had to be reopened surgically. We avoided this by inserting a small rod sent by Kathie Guardino each morning and afternoon. Except for a scar leading to her navel, you can not see any evidence of the Malone. There were times just after the surgery that the catheter we tried to insert would bend instead of just going in. To keep it straight and firm we used a blunt, large plastic yarn needle and inserted the tip of the needle into the end of the catheter through the hole that is at the end of the tube. After the tube entered the opening like it should, we pulled the needle back out and continued pushing in the catheter.

Faith Svigos - Malone by Pena at age 5, now 6.5. Tendency to be constipated. Pre and post Malone solutions were the same (2 pediatric fleets) and accidents only rarely both before and after. The only complication is mild leaking sporadically thru the opening when Faith has a GI virus.

Anonymous - Age 12, Malone at age 11 by Pena. Tendency to be constipated. Accidents were rare both before and after. Solution very similar both before and after. he had a slight post-op infection at the belly button.

Elliot Rose - Malone performed by Pena at age 6, now 7. Tendency to be loose. Accidents rare both before and after. Solution similar. No complications.

From Cheryl (Mom to Scott, HIA, 5yrs, Malone)

Scott's Malone looks like a really deep set "innie" (sp?) belly button. Of course there is a very thin lined scar from the bottom of the belly button down to about his pubic bone. I must say the Malone scar looks tons better than his pull-thru scar.

Answers From Nova

For those of you who have experienced the Malone, can you please tell me

1) how well is the opening hidden in the belly button? Could a casual observer tell? No.

2) Does the belly button leak? No.

3) Is there an odor? No, not at all.

4) Is it safe to go swimming? Absolutely.

5) After the surgery, were there any surprises about any of the info you had or didn't have regarding the Malone? No.

From Amy:

Our daughter Bea had a Malone at age 3. While "the tube" is not her favorite part of the day, it has made an enormous difference in her life. Our routine is 1/2 an adult Fleets, followed by 500 mls of normal saline. She is clean in 15 minutes. With this regimen, she is clean for (at least) 24 hours.

From Bonnie M. (Mom to Amy - 10 years old)

Amy sits for at least 30 minutes. She starts with the glycerin/saline mix and sets the timer for 10 minutes to let that "work". She then does a saline flush and sits for at least another 20 minutes to empty. She has tried to shorten that time but seems to still need at least 20 minutes to get done.

Complications to Watch For

From Laurie (Mom to Ariel, pseudo-obstruction, neurogenic bladder, 12yrs)

The Malone does not always work as easily as it is supposed to. Children with severe dysmotility problems frequently do not have good results but this phenomenon is only recently being encountered. Also, it is rare to hear of the Malone down side. My daughter suffered a perforated bowel from the catheter 6 weeks post op and needed emergency surgery to repair it. The appendix was used and the perforation occurred at the site of the anastamosis. The catheter used was the same kind we use for bladder cathing (Mentor self-cath type). Ariel's Malone tract was always difficult to catheterize and when we could not get the catheter in one day the pediatrician worked at it and ultimately perforated the bowel. I do not believe this can happen readily in healthy bowel and it is presumed the area of the Malone never healed properly in Ariel. Nevertheless one must be aware that there can be serious complications. Difficulties continued and exploration under general anesthesia revealed that the appendix had kinked and was therefore unusable. Later surgery found that the appendix had scarred and hardened as well. The Malone had to be taken down to do an ileal conduit. Like Connie's daughter, Ariel has problems with incontinence secondary to the irrigations as the fluid does not clear the bowel easily.

            Ariel has all her surgery done at the University of California at San Francisco. Hers was by no means the first such procedure at UCSF. None others have had significant complications. Perforation at the site of the Malone must be rare as it is unreported.

From Bette (mom to Braden, HD, 3)

For those of you using or planning to use the Malone/ACE one thing to watch out for is it not functioning properly (i.e. water squirting out of the belly button while irrigating or after irrigating but still sitting on the toilet) This happened with Braden and come to find out the ACE had blown. We were using saline and glycerine. After the ACE blew he reacted to the glycerine. Had a very bad reaction and had to revert to plain saline until the ACE was taken down. Braden’s was the first case the docs here had ever seen of this happening. They couldn't even figure out "why" it did. Just a few things I felt I should caution you all about. It's a really good idea in general. I wish that it had worked for Braden, but it wasn't the choice for him. I hope you all have better success with it.

From PTN Guys printed in PTN News Vol.9, #3

One month after the Malone surgery (done by Pena) I started experiencing problems. At first I developed a rash surrounding my belly button. Then my umbilical opening started bleeding when I passed the tube through it to administer enemas. After that I experienced leakage and soiling out of my umbilicus. And, finally, my opening completely closed altogether. There is no definite reason as to why these problems may occur. This past September I went back to New York to be reoperated on. So far, I have had a successful run, but I am still in the six month recovery period.

Post Malone Care

From Nova

The opening to the Malone gets tighter over time - ex. 2 yrs. Pena mentioned that when it does get this tight, to put it in and tape the feeding tube to the body for a week. I’ll need to try this soon.

Debbie, mom to Vova (High defect IA, malone, finger pollicization for absent thumbs, de-tethered cord, unilateral hearing loss, some bladder anomalies)

My son Vova (age 10) had the malone 3 1/2 years ago. Dr. Pena did it. About 1 year ago, Vova had an experience with leaky stoma right after his enema. I t only lasted about an hour or so and then stopped. About 6 months or so later it happened again. And again, it stopped in about an hour. Total, this has happened 3 or 4 times to him. Never lasts very long. Each time we could correlate the problem to getting too involved in a game or something, while doing the enema. In these cases he had the catheter in longer than usual, and was being too active while doing the enema (overly exercising stomach muscles while trying to win the game etc). They doctor is suppose to make a 1-way valve in the stoma, to prevent leakage. It may have to be "adjusted". This is where they make the opening a little smaller. I believe that Dr. Pena said that with his patients, about 10% of the time there is leakage that has to be "adjusted" surgically.. Also, Vova has never had pain inserting his catheter, but initially if he had trouble getting the tube inserted, we used some Surgilube on the end to make it more slippery,

Additional Information on Cecostomies Available in the Literature

From Bonnie

            In a Journal article from 1996 the doctors at Royal Belfast Hospital for Sick Children (UK) reported on 13 children who had received the Malone procedure. Nine of the children has previously undergone pull-through procedures for HD or HIA. Two were suffering from spina bifida and two from "idiopathic functional constipation". Eleven of the children attained a "continent stoma", all of whom would have been considered for sigmoid colostomy before the antegrade enema procedure.

            In an article written by Dr. Pena and published in 1997 he reported that 19 or the 20 patients that received a Malone are now completely clean 24 hours a day. Stricture of the stoma occurred in two patients and required revision. Leakage at the appendicostomy site occurred in three patients and two required a tighter plication. He specifically states that, in his opinion, this procedure must only be used in those patients who have proved success with rectal enemas.

            Doctors from the Great Ormond Street Children's Hospital reported in February 1998 that "stomal stenosis is a frequently encountered problem that may require surgical revision." They reported stenosis in 12 of the 30 patients cited in their study. In September 1997 doctors from the Children's Hospital Medical Center, Cincinnati concluded that "continent cecostomy for the antegrade continence enema is highly effected even in the presence of severe structural anorectal disease".

            Here is a list of the abstracts that I have, along with the authors/doctors and the hospitals. These may provide a resource to doctors doing the procedures.

 

The Cecostomy Button, P.G. Chait, B. Shandling, H.F. Richards

Hospital for Sick Children, Toronto, Ontario, Canada

Journal of Pediatric Surgery, June 1997

 

Transversely Tubularized Ileal Segments for the Mitrofanoff or Malone

Antegrade Colonic Enema Procedures: the Monti Principle, I.D. Sugarman,

P.S. Malone, T. R. Terry, M.A. Koyle

Dept. of Pediatric Urology, Southampton General Hospital, UK

British Journal of Urology, February 1998

 

Refashioned Short Bowel Segments for the Construction of Catheterizable

Channels (the Monti Procedure): Early Clinical Experience, R. Gosalbez,

D. Wei, A. Gousse, M. Castellan, A. Labbie

Jackson memorial Hospital and Miami Children's Hospital and Dept. of

Urology, University of Miami School of Medicine

Journal of Urology, September 1998

 

Antegrade Continent Enema Management of Chronic Fecal Incontinence in

Children, D. E. Meier, M.E. Foster, P.C. Guzzetta and D. Coln

Dept. of Surgery, University of Texas Southwestern Medical School and

Children's Medical Center, Dallas, Texas

Journal of Pediatric Surgery, July 1998

 

Simplified Technique for Antegrade Continence Enemas for Fecal Retention

and Incontinence, E. W. Fonkalsrud, J.C. Dunn, A.I. Kawaguchi

Dept. of Surgery, University of California, Los Angeles School of

Medicine

Journal American College of Surgeons, October 1998

 

Antegrade Colonic Enemas, A.C. Dick, W.A. McCallion, S. Brown, V.E.

Boston

Dept. of Pediatric Surgery, Royal Belfast Hospital for Sick Children,

U.K.

British Journal of Surgery, May 1996

 

Continent Appendicostomy in the Bowel Management of Fecally Incontinent

Children, M.A. Levitt, S.Z. Soffer, A. Pena

Dept. of Surgery, Long Island Jewish Medical Center, New York, NY

Journal of Pediatric Surgery, November 1997

 

Functional Results Following the Antegrade Continence Enema Procedure,

K.R. Shankar, P.D. Losty, S.E. Kenny, J.M. Booth, R.R. Turnock, G.L.

Lamont, R.J. Rintala, D.A. Lloyd

Dept. of Paediatric Surgery, Institute of Child Health, Alder Hey

Children's Hospital, University of Liverpool, U.K.

British Journal of Surgery, July 1998

 

Control of Fecal Incontinence: Continued Success with the Malone

Procedure, S.R. Schell, G.J. Toogood, N.E. Dudley

Dept. of Surgery, Johns Hopkins Hospital, School of Medicine, Johns

Hopkins University, Baltimore, MD

Surgery, Sept. 1997

 

The Antegrade Continence Enema Procedure Why, When and How?, P.S.

Malone, J.I. Curry, A. Osborne

Dept. of Paediatric Nephrourology, Southampton General Hospital, UK

World Journal of Urology, 1998

 

The Antegrade Continence Enema Procedure: A Review of the Literature,

J.L. Graf, C. Strear, B. Bratton, H. T. Housley, R. W. Jennings, M.R.

Harrison, C.T. Albanese

Dept. of Surgery, Fetal Treatment Center, University of California, San

Francisco, CA

Journal of Pediatric, August 1998

 

The Malone (antegrade colonic enema) Procedure: Early Experience, D. T.

Wilcox, E.M. Kiely

Great Ormond Street Children's Hospital NHS Trust, London, England

Journal of Pediatric Surgery, February 1998

 

The Malone Antegrade Continence Enema for Neurogenic and Structural

Fecal Incontinence and Constipation, M. A. Koyle, D.M. Kaji, M. Duque,

J. Wild, S.H. Galansky

Section of Pediatric Urology, Children's Hospital, University of

Colorado School of Medicine, Denver, CO

Journal of Urology, August 1995

 

Role of the Antegrade Continence Enema in the Management of the Most

Debilitating Childhood Recto-urogenital Anomalies, C.A. Sheldon, E.

Minevich, J. Wacksman, A.G. Lewis

Division of Pediatric Urology, Children's Hospital Medical Center,

Cincinnati, Ohio

Journal of Urology, September 1997

 

Appendiceal Cecoplication: A Modification of the Malone Antegrade

Colonic Enema Procedure, J. A. Stock, M.K. Hanna

Dept. of Surgery, University of Medicine and Dentistry of New Jersey,

New Jersey Medical School, Newark, NJ

Technical Urology, Spring 1996

 

Malone Antegrade Continence Enema for Adults with Neurogenic Bowel

Disease, J.M. Teichman, J.M. Harris, D.M. Currie, D.B. Barber

Dept. of rehabilitation Medicine, University of Texas Health Science

Center, Audie L. Murphy Veterans' Affairs Medical Center, San Antonio,

TX

Journal of Urology, October 1998

 

The Malone Antegrade Continence Enema Procedure in the Management of

Patients with Spina Bifida, T.W. Hensle, E.A. Reiley, D.T. Chang

Dept. of Urology, College of Physicians and Surgeons, Columbia

University, New York, NY

Journal of the American College of Surgeons, June 1998

 

Button Device for Antegrade Enema in the Treatment of Incontinence and

Constipation, K. Fukunaga, K. Kimura, J.P. Lawrence, R. T. Soper, L.A.

Phearman

Dept. of Surgery, University of Iowa College of Medicine, Iowa City,

Iowa

Journal of Pediatric Surgery, August 1996

 

Selected Abstracts from Medline from Jan. ‘98 Post

1.Gerharz EW; Vik V; Webb G; Leaver R; Shah PJ; Woodhouse CR. The value of the MACE (Malone antegrade colonic enema) procedure in adult patients. Journal of the American College of Surgeons, 1997 Dec, 185(6):544-7. (UI: 98067381) AT: UCD HealthSci W1 JO929D v.178-185, 1994-1997. Subscription cancelled. UCD MedCtr W1 JO929D Current 15 years-. Currently received. (PE title: Journal of the American College of Surgeons.)

Abstract: BACKGROUND: We report our experience with the Malone antegrade colonic enema (MACE) procedure in adult patients suffering from urinary incontinence and intractable constipation with or without fecal soiling. STUDY DESIGN: Since June 1990, the MACE procedure was initiated in 4 female and 12 male patients 14-54 years old (mean age, 29.9 years) with different pathologic conditions (myelodysplasia, n = 7; anorectal anomaly, n = 3; spinal cord lesion, n = 4; neuropathic disease of unclear cause, n = 2). Three surgical techniques were used: reversed and in situ appendix and tapered ileum). Complex simultaneous urologic continence procedures were performed in nine patients. Two patients had undergone previous operations in the lower urinary tract. RESULTS: After 6.6 years of followup (average, 41.7 months), eight patients (50%) were still using the MACE successfully. They were completely clean day and night and were relieved of symptoms of constipation. Eleven complications related to the MACE procedure occurred in seven patients (44%). Eight patients abandoned the procedure for various reasons. The failure rate was higher in chronically constipated patients without fecal soiling. CONCLUSIONS: The MACE procedure is associated with a high failure rate when used in adults, but it may be possible to identify a subgroup of patients in whom the procedure could be beneficial. Success would depend on overcoming technical problems and difficulties with patient compliance.

 

2. (Sheldon CA; Minevich E; Wacksman J; Lewis AG. Role of the antegrade continence enema in the management of the most debilitating childhood recto-urogenital anomalies. Journal of Urology, 1997 Sep, 158(3 Pt 2):1277-9; discussion 1279-80. (UI: 97402816) AT: UCD HealthSci W1 JO985 V.1, 1917- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 JO985 Current 10 years- (Lacks: v.139, no.4). Currently received. (PE title: The Journal of urology : official journal of the American Urological Association, Inc.)

Abstract: PURPOSE: We evaluated the antegrade continence enema for managing the most severely compromised fecal continence mechanisms and the efficacy of nonappendiceal conduits in children when appendix is unavailable. MATERIALS AND METHODS: Ten patients 3 to 25 years old underwent continent cecostomy for the purpose of the antegrade continence enema. Diagnoses included the VATER association in 4 cases, myelomeningocele in 3, cloacal anomaly in 2 and isolated imperforate anus in 1. Eight patients received a tubularized ileal conduit, 2 received an appendiceal conduit and 2 underwent concomitant fecal undiversion. RESULTS: Followup ranged from 4 to 28 months (mean 17.6). All patients have achieved excellent fecal continence and no significant stomal soilage or difficulty with catheterization has been noted. Patients reported a high degree of satisfaction. CONCLUSIONS: Continent cecostomy for the antegrade continence enema is highly effective even in the presence of severe structural anorectal disease. The tapered ileal conduit is an excellent alternative to the appendiceal conduit.

 

3. Chait PG; Shandling B; Richards HF. The cecostomy button. Journal of Pediatric Surgery, 1997 Jun, 32(6):849-51. (UI: 97343528) AT: UCD HealthSci W1 JO812 1, 1966- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 JO812 Current 10 years-. Currently received. (PE title: Journal of pediatric surgery.)

Abstract: Percutaneous insertion of a cecostomy tube, performed under local anesthesia, to facilitate antegrade colonic cleansing, has been an invaluable advance in the management of fecal incontinence. However, the patient is left with a length of tubing (2 to 4 inches) protruding from the cecostomy site that has to be taped down to the abdominal wall. Available devices for insertion in place of the cecostomy tube are cumbersome and have a relatively high profile, projecting more than 1 cm from the surface of the abdominal wall. Worn under a swimsuit, they are clearly discernible. The inflated balloon within the cecum can occasionally break. Furthermore, in the individual with a relatively thick abdominal wall, such devices are too short to reach from the skin to the cecum. A new form of low-profile trapdoor device has been developed that overcomes the above shortcomings of other available "buttons." It has been successfully used in a clinical setting in 49 patients.

 

4. Kalidasan V; Elgabroun MA; Guiney EJ. Button caecostomy in the management of faecal incontinence. British Journal of Surgery, 1997 May, 84(5):694. (UI: 97315765) AT: UCD HealthSci W1 BR675 v.1-78, July 1913-1991. Subscription cancelled. UCD MedCtr W1 BR675 Current 10 years- (Earlier volumes housed at HSL). Currently received. (PE title: British journal of surgery.)

 

5. Chait PG; Shandling B; Richards HM; Connolly BL. Fecal incontinence in children: treatment with percutaneous cecostomy tube placement--a prospective study [see comments]. Radiology, 1997 Jun, 203(3):621-4. (UI: 97313074) AT: UCD HealthSci W1 RA380 V.1, SEPT.1923; 2, NO.4-6, 1924; 3-5, 1924-25; 8, 1927; 12, 1929- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 RA380 Current 15 years- (Lacks: v.179, no.3). Currently received. (PE title: Radiology.)

Abstract: PURPOSE: To evaluate the technique used for and long-term results of percutaneous cecostomy tube placement for the treatment of fecal incontinence in children. MATERIALS AND METHODS: After an initial pilot study in 15 patients, 42 additional patients with fecal incontinence aged 2-20 (mean, 11.5) years and weighing 9.9-109.0 (mean, 39.2) kg underwent percutaneous cecostomy tube placement. Twenty-nine patients had spina bifida, nine had imperforate anus, three had cloacal anomalies, and one had Hirschsprung disease. Mean follow-up was 265 days (range, 8-503 days). RESULTS: Tube placement was successful in all patients. One patient developed local inflammation after accidental early retention-suture removal, which was treated with suture replacement and intravenous antibiotics. Another developed postprocedural ileus, which resolved. Late complications included constipation in one patient (treated with diet alteration), granulation tissue in seven patients (treated with silver nitrate cautery), and accidentally dislodged tubes in three patients (two successfully replaced at home and one replaced at the radiology suite). Vomiting related to the phosphate enema occurred in two patients. Resolution of soiling was achieved in all patients. CONCLUSION: Percutaneous cecostomy and antegrade enemas are very successful in achieving fecal continence and patient independence and acceptability, with minimal early and late complications.

 

6. Towbin RB. Percutaneous cecostomy [editorial; comment]. Radiology, 1997 Jun, 203(3):604. Pub type: Comment; Editorial. (UI: 97313071) AT: UCD HealthSci W1 RA380 V.1, SEPT.1923; 2, NO.4-6, 1924; 3-5, 1924-25; 8, 1927; 12, 1929- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 RA380 Current 15 years- (Lacks: v.179, no.3). Currently received. (PE title: Radiology.)

 

7. Fukunaga K; Kimura K; Lawrence JP; Soper RT; Phearman LA. Button device for antegrade enema in the treatment of incontinence and constipation. Journal of Pediatric Surgery, 1996 Aug, 31(8):1038-9. (UI: 97016602) AT: UCD HealthSci W1 JO812 1, 1966- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 JO812 Current 10 years-. Currently received. (PE title: Journal of pediatric surgery.)

Abstract: Antegrade enema through an appendicostomy is effective in improving the quality of life for patients with incontinence or severe constipation. For patients without an appendix, a conventional gastrostomy button was used to create a cecostomy (or ileostomy) that served as a port for the administration of enema solutions.

 

8. Shandling B; Chait PG; Richards HF. Percutaneous cecostomy: a new technique in the management of fecal incontinence. Journal of Pediatric Surgery, 1996 Apr, 31(4):534-7. (UI: 96272389) AT: UCD HealthSci W1 JO812 1, 1966- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 JO812 Current 10 years-. Currently received. (PE title: Journal of pediatric surgery.)

Abstract: A pilot study on the percutaneous introduction of a cecostomy tube for colonic irrigations in the treatment of children with fecal incontinence is described. The results were good, and the technique is recommended for certain patients.

 

9. Ellsworth PI; Webb HW; Crump JM; Barraza MA; Stevens PS; Mesrobian HG. The Malone antegrade colonic enema enhances the quality of life in children undergoing urological incontinence procedures. Journal of Urology, 1996 Apr, 155(4):1416-8. (UI: 96230204) AT: UCD HealthSci W1 JO985 V.1, 1917- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 JO985 Current 10 years- (Lacks: v.139, no.4). Currently received. (PE title: The Journal of urology : official journal of the American Urological Association, Inc.)

Abstract: Purpose: Functional alterations of the gastrointestinal and genitourinary tracts, and physical limitations in children with spina bifida, imperforate anus and spinal cord injury challenge the ability to have independent fecal and urinary continence. Urologists have successfully helped these patients achieve urinary continence. We report our experience with the antegrade colonic enema procedure, which allows select individuals to achieve continence of stool, enhancing quality of life. Materials and Methods: Since December 1992, 18 antegrade colonic enema procedures were performed in 12 female and 6 male patients 5 to 31 years old of whom 14 had spina bifida, 2 had imperforate anus and 2 had spinal cord injury. Simultaneous urological continence procedures were performed in 8 patients, including appendicovesicostomy in 4, augmentation cystoplasty in 2 and augmentation cystoplasty plus an ileal Mitrofanoff procedure in 2. Four patients previously underwent urological reconstruction. Results: In 24 months of followup (average 6.6) all patients with a functioning stoma remained continent of stool and 17 were continent of urine. Complications related to the antegrade colonic enema procedure occurred in 4 children (22%) of whom 3 required further surgery. Three patients (17%) had minor stomal stenosis. Conclusions: The antegrade colonic enema procedure is easily performed and it should be considered for any child with significant physical limitations and/or refractory fecal incontinence before urological continence promoting procedures are done.

 

10. Squire R; Kiely EM; Carr B; Ransley PG; Duffy PG. The clinical application of the Malone antegrade colonic enema. Journal of Pediatric Surgery, 1993 Aug, 28(8):1012-5. (UI: 94046330) AT: UCD HealthSci W1 JO812 1, 1966- Recent issues in HEALTH SCI Current Periodicals; older issues bound in book stacks. Currently received. UCD MedCtr W1 JO812 Current 10 years-. Currently received. (PE title: Journal of pediatric surgery.)

Abstract: Continent, catheterizable enterostomies (Malone stomas) have been formed in 25 patients. A reversed appendicocecostomy was used for the majority, although experience has led to modifications of this procedure. Antegrade enemas are regularly administered via these stomas in the treatment of fecal incontinence and intractable constipation. There have been only two important surgical complications, and the technique has proved to be highly successful. Follow-up of the patients has shown that individual requirements can be met with variations in the administration of the enemas.

Oral Enemas

From Monique (Mom to Sami)

Date: 4 Nov. 1997

I found out the name of the fleet product given by mouth - it is "Fleet's Phospho Soda". It can be found "over-the-counter". Directions should be on the package, but this is what my doctor told me.

1. Given on empty stomach

2. 30 minutes before meal or right before bedtime

3. Dilute "recommended dosage" with 4 oz cool water

4. Drink

5. Follow with 8 oz. cool water (maybe use Crystal Light)

Ages 5 - under 10 - 1 tsp.

Not recommended for under 5

My doctor said to try 1/2 tsp. on Sami, since she's only 2 and adjust it according to results.

If any of you try it, please let me know your results. I don't give enemas to Sami unless she really needs one. I gave her one last week but that was the first one in a couple of months.

From Karen B.

I would have to wonder about nutrition and nourishment if you are cleaning out from above like that. Does it give you a chance for absorption or does it just push everything through faster? Not something I think I would try!

 

Tethered Cord

 

A basic definition of a "tethered cord" is a spinal cord that is unable to move because it is being held by surrounding tissue. The degree of severity in tethered cord depends on where the cord is tethered and how much it is being stretched. The severity is also impacted by the relationship between the tethering and the nerves. Although it is a congential defect, the diagnosis of tethered cord has two peaks - below 1 yr. of age and between 4 and 5 years of age. When I first wrote this section, Stephen was 14 months old and I was trying to gather enough evidence to convince his doctors to repeat the MRI he had had when he was one week old. We did do another MRI at 1.5yrs. and there was no sign of tc. Since then, Stephen has been diagnosed with tc at age 4 and untethered. Within six months of his tc surgery, his "normal" twin was diagnosed w/ a fatty filum and detethered. Within 4 months of Timothy's surgery, the boys' 2.5yr. old sister also had a filum section. What I have learned is that the element of denial is strong in all of us - including our childrens' doctors. I wish I had acted sooner and been more insistent in getting MRIs. PLEASE don't let your fear of looking like a paranoid parent or your fear of this surgery prevent you from pushing for an MRI ASAP. Your goal is to prevent permanent damage (pain, incontinence, etc.). The longer your child has symptoms before surgery, the more likely his symptoms are to be permanent. Know what to look for and if you see it - don't panic! Just try to get an MRI ASAP as well as a second opinion. ALWAYS get a second opinion. Read on.

 

Spinal dysraphism refers to abnormal development of the midline neural structures and overlying bones and soft tissues that is related to a disturbance in closure of the neural folds. At the site of the defect, the spinal cord may be tethered to the adjacent tissues.

 

High Risk Indicators

From Tethered Spinal Cords (PTN article, Vol. 6, #2)

Based on The Tethered Spinal Cord in Patients with Anorectal Malformations by Marc. A. Levitt, Mahendra Patel, George Rodriguez, Daniel S. Gaylin, and Alberto Pena, Journal of Pediatric Surgery, Vol. 32, #3, March ‘97, pg. 462-468

Anorectal malformations 27 of 111 Pena patients (out of 934) who had an MRI were tethered - i.e. 24%. In literature this varies from 10-52%. 18% of kids w/ prostatic fistula had a tethered cord.

Lateral sacral ratio less than 0.6

AP sacral ratio less than 0.4

Presence of myelodysplasia (90%)

Single (56%) or Ectopic (50%) kidney

Sacral (57%) or spinal (43%) hemivertebra

Presacral mass (60%)

Hypospadius (50%)

Other urological abnormalities such as hydronephrosis (30%), dysplastic kidney (25%), and vesicoureteral reflux (10%) were NOT as important.

Foot defects

Hypertrichosis

Scoliosis

From Mothers on PT list

Malformed or missing vertebrae

 

Other Indicators Appearing Over the Spine/Sacrum

From Tethered Spinal Cords (PTN article, Vol. 6, #2)

Based on The Tethered Spinal Cord in Patients with Anorectal Malformations by Marc. A. Levitt, Mahendra Patel, George Rodriguez, Daniel S. Gaylin, and Alberto Pena, Journal of Pediatric Surgery, Vol. 32, #3, March ‘97, pg. 462-468

Hemangiomas (vascular birthmarks that look like strawberries, show up w/in few weeks of birth)

Skin tags

Dimples

Lipoma (Fatty tissue)

From Tethered Cord by Fred Epstein, M.D. (PTN Newsletter article, Vol. 5, #3)

Reprinted from Your Child and Neurosurgery

ANY cutaneous abnormality which occurs in the midline and is at the lumbar-sacral junction or above it has a very high probability of being associated w/ underlying abnormalities of the spinal cord. (angiomas, lipomas, sinus tracts or dimples, hairy patches, atrophic patches, abnormal skin appendages) A sinus that is inferior to lower third of the tail bone of the spine (sacrum) or over its tip, is, in reality, a pilonidal sinus tract w/ no neurological importance. When the identical sinus tract is over the upper two thirds of the tail bone or at its juncture with the lower spine there is a strong likelihood that the tract is, indeed, passing anteriorly and superiorly into the spinal canal and through the spinal cord’s coverings. An MRI scan may be normal. Nevertheless, it is this type of fistula that may be a conduit for bacteria to pass from the skin’s surface into the spinal fluid and cause meningitis. For this reason, all sinus tracts in this location should be excised whether or not there is an associated radiologic abnormality.

From Karen  (Mom to Stephen, VATER, TC, SM and Timothy TC, SM)

Stephen had a small dimple at the top of his butt crack. It was attached to a crooked line which began at the top of his pullthrough scar so I thought it might have even been from the pullthrough. (There is at least one other child on the PTN w/ the same dimple description and tc combination) I asked at least 2 pediatric neurosurgeons and 2 pediatric surgeons about it from the time he was 6mos. to 2 yrs. Everyone said it was fine and NOT an indicator of tc. Not only did he have tc, but now that he is 4 yrs.old, the dimple is actually palpable to reveal spina bifida. In other words, you can put your finger in it and feel how his vertebra is closed in that spot! Stephen had an MRI at 1.5yrs. that showed no signs of tc or spina bifida. Also, I read somewhere that an asymmetric buttocks crease could be a sign of tethered cord.

Genetics Research Study Participants Needed

Tethered cord and spinal dysraphism are considered neural tube defects (NTDs). Duke, in cooperation w/ hospitals all over the country, is looking for the genetic and environmental causes of both open and closed forms of NTDs. Duke in collaboration w/ McLone received a huge NIT grant ($400K/yr. for 5 years) to speed up and continue this work that has been going on for years. All families w/ an individual w/ an NTD are welcome. They are esp. interested in families who have more than one member with any type of neural tube defect. (I believe this includes extended family members) Currently, they have about 800 families and need 200 more to be able to start a gnome study. Other studies and research are also currently going on but large numbers are needed for the gnome. If you are interested, call (800) 283-4316.

Symptoms

Symptoms are usually INTERMITTENT and can be aggravated by flexion/extension of the spine. Symptoms are often one-sided. Symptoms frequently show up during growth spurts although it is possible to not thave any symptoms/pain and still be tethered. Direct trauma to the back or buttocks can precipitate the onset of symptoms. Arching the back or bending to touch the toes can be extremely painful. Symptoms can also be increased by straight leg raising exercises or prolonged sitting. Note that the pain can be "radiating" - that is it can appear to move from place to place rather quickly and may not stay for long at all in any one particular place. Stephen initially complained of leg pain 2-3x/week always on the way home from riding his tricycle. When I asked him where it hurt, he would point to one place than another than another on different legs all w/in a minute or two. This was "radiating" pain. The most common symptoms are motor weakness in the lower extremities, lower extremity pain, and urological difficulties. I have attempted to summarize below signs and symptoms of tethered cord. Please do not think that your child has to have many of these symptoms to be tethered. He doesn't! Stephen's only symptom for two months was that intermittent leg pain for 10min. 2-3x/week. Timothy's only symptom for the first two months was an intermittent tickle sensation in his penis. The goal w/ tc is to catch it as early as you can. If your child has IA and then suddenly develops any of the following symptoms even though the symptom is intermittent you should press for an MRI asap. Your goal is to catch this BEFORE incontinence and gait abnormalities. These are late signs.

 

Skin anomalies along the spine - dimple, skin tag, hairy patch, a dermal vascular malformation, or a noticeable subcutaneous lipoma (fatty lump), asymmetric buttocks crease.

Back - bony abnormality, pain, scoliosis, kyphosis (In Stephen's case, you can actually feel the lack of closure of his sacral vertebra by just pressing in on his dimple and not meeting any bony resistance.)

Gait abnormality - asymmetry, falling down, Walking on toes (flat or curled up), Walking w/ feet turned in or out which may only happen while walking fast or running (or in Stephen's case when he had on heavy sneakers) Should be able to tandem, heel, and toe walk. Should be able to get up off of the floor without favoring one side. Should be able to lead with either leg when going up and down stairs.

Legs - radiating pain (pain that moves around randomly), discrepancy in muscle size or strength, difference in leg length or circumference, muscle atrophy or weakness, pain, hamstring tightness, tibial torsion, knock kneed, numbness (can be described as a cold spot), tingling (I've never seen it listed but Stephen has femoral torsion and both my boys complained of a squeeze pain approx. midway up the thigh.)

Foot - pain esp. in the arch and along the bottom, toe pain, high arch, feet different sizes, alterations in the configuration of toes with hammer or claw digits, valgus deformity, tingling, numbness. Tickle the bottom of his feet. Do the toes on one foot curl more than the other side?

Ankle - weakness at the ankle, rigidity, pain, tingling, numbness (for my kids pain was in the top crease, along the outside bone, in a vertical line going up the back of the ankle, or a squeeze around the whole thing)

Arms - radiating pain

Urinary - bladder spasms, Testicular pain, incontinence (Incontinence can be intermittent and can be only at night and may then progress to early morning and eventually daytime accidents. Timothy often went a week or two with no accidents.), frequency, recurrent infection, increased urgency, dribbling, numbness (my kids described this as a cold spot and often thought they had had an accident when in fact their underwear was completely dry). I've never seen it listed but Timothy complained of a tickle sensation in his penis and occasionally of something sticky at the tip that made it stick to his underwear. Maybe this was a mild infection?

Bowel - constipation, incontinence, Absent perianeal sensation

Sensation - Loss of sensation in extremities may occur and is often patchy in distribution and nondermatomal.

Reflexes - Deep tendon reflexes can be brisk, absent, or normal (At 4.5yrs., which means he was able to cooperate for the neurological exam, Timothy had no neurological deficits both before and after surgery. This includes reflex, sensation, and weakness)

Change in alignment of knees, ankles, and feet - Timothy was definitely not knock kneed at 3.5 and was at 4.5yrs

Change in posture

 

From Caroline (Mom to Michael, 8mos.. HIA)

The main nerve roots that innervate the knee region, L2-L4, also would be consistent with tethered cord symptom. I recently discovered the following tips as well (more for the boys though). If you find that your child has one of the following, and then all of a sudden loses the ability to do it - then you need to start pushing to get your child seen immediately.

1. asses whether your child has an anal wink (is she able to contract any muscles around the anal region). For boys you can gently squeeze the penis, and it should reflexively contract muscles in the anal region.. take a wooden q-tip and lightly scratch around the left side of his anus, and then to the right side (with the wooden end of q-tip). His anus

should contract or tighten. Do both sides tighten equally?

2. boys have a cremesteric reflex - if you lightly scratch your fingernail up the inner thigh, the gonads on that side should lift up. Check both sides.

3. Also for boys, if they have the ability to have an erection, and then all of a sudden they lose this ability- it's time to see a NS!

From Tethered Cord and Associated Vertebral Anomalies in Children and Infants with Imperforate Anus: Evaluation with MR Imaging and Plain Radiography

Radiology 1996; 200:377-382

The onset of symptoms is variable but usually occurs in childhood and may be slowly progressive. Once clinically apparent, symptoms may be irreversible, particularly those associated with neurogenic bladder.

From Cathy  (Mom to Andrew, 10)

Andrew’s tethered cord symptoms started with his complaining of pain, on his spine, about the middle of the back not towards bottom of the spine, and also complaining of tummyache. When trying to pinpoint the pain,.it's on his spine right in the middle of his back or maybe slightly below the middle. The pain comes in waves, severe at times, then subsiding some. Tethered cord definitely can effect continence...every time Andrew has had a cord problem..one of the first signs was loss of continence

From Marti (MS, RN, CS)

The symptoms that I have seen most often in the "borderline" kids (not obviously tethered) are leg pains, gait changes and incomplete urinary continence. Reports of these symptoms have caused me to re-look at the MRI or order another one.

From Connie (Mom to Billy, 8mo., TC, CRS, LIA, etc.)

He had an MRI done at eleven days old. We had three different NS's look at the films (long story). The radiologist reading the study did not think the cord was tethered, and two out of three doctors did. With Billy being so young, it was hard to know if the tethered cord was bothering him..Billy used to arch his back violently whenever I tried to sit him in my lap, so I believe he used to have pain upon sitting down. He started with the excessive arching whenever I tried to bend his legs slowly, but it got to where it was almost all the time. Even his PT commented on it. Sitting was worse than bending while laying down since there was weight involved. At that time I figured that he was doing it because bending was putting too much pressure on the spinal cord, and not the normal arching a baby occasionally does. Billy had surgery done at 4 mo. old. He never arched again after surgery.

Testing

X-rays are not definitive. An MRI should be done and interpreted by a Pediatric NEUROradiologist or Neurosurgeon.

Screening All IA Children

From Marti (MS, RN, CS)

I have a strong opinion about the need for spinal MRIs for all kids with anorectal anomalies. Extensive review of the literature reveals that centers who are looking carefully are finding as many as 50% of the imperforate anus patients with spinal cord anomalies. We have that same rate here. I will be happy to send off the abstracts for some of these articles if wanted- they take up lots of list-space though. The articles also state that there is not a correlation with the level of defect, etc. We screen every imperforate anus patient's spinal cord. We have found not only tethered cords, but the blunt, short cord that ends at T12, indicative of lack of sacral nerves to the bladder and bowel. Either case warrants early detection and intervention as the results of them can cause irreversible bladder and thus kidney damage.

Ultrasounds

From Karen B. (Head of PTN, Mom to Sammy)

From what I understand, ultrasound is only useful to detect a tethered cord if it is done within the first three months. After that, only an MRI can detect the tethering.

Interpreter Should be Pediatric Neuroradiologist

From Gretchen (Mom to Franklin, 16 mos., HIA, bulbar fistula)

A regular radiologist looked at Franklin's films and told us that everything was completely fine, so I think that you do need a neuroradiologist. We were also told to make sure that it was a pediatric neuroradiologist.

MRIs after 3 Months, Importance of Interpreter

From Marti (MS, RN, CS)

We found approximately half of our MRIs misread when not read by the pediatric neurosurgeon. It is very subjective in that the more subtle anomalies escape physicians who are not experts. Dr. Pang in Sacramento is an expert in spinal cord anomalies. MRI has been shown to be the best at detecting a tethered cord. Our California HMOs are trying to push us to just use ultrasound but we are resisting strongly. We routinely get an MRI on every child with an imperforate anus. We prefer to wait till 3 months of age since we get a better image. If they show any signs of cord tethering we will repeat it. We have a very low threshold for looking at the spinal cord. A patient can show the signs of tethering at any age, the symptoms would appear as the cord gets stretched tighter. I have been attempting to retrieve the past 10 years worth of patients that have not had an MRI so we can look before they have their adolescent growth spurt.

From Tethered Cord and Associated Vertebral Anomalies in Children and Infants with Imperforate Anus: Evaluation with MR Imaging and Plain Radiography, by Frederick Long, MD, and Hunter, Mahboubi, Kalmus, Templeton (from Children's Hospital of Philadelphia). It's in Pediatric Radiology, 1996, vol. 200, pages 377-382. On page 382 it says: "Although MR imaging can be performed in newborns, on the basis of personal experience (Jill V. Hunter, MD) obtainable image quality is better and interpretation is easier and therefore more accurate when the infant is at least 3 months of age." She's the one to call! (Phone # for Children’s Hospital of Philadelphia is 215-590-1000) They reported on 86 patients with imperforate anus who had MRIs- that's a large sample. The article is actually very good and explains the association with imperforate anus and spinal cord malformations very well.

Tips for Getting MRIs Scheduled Quickly

From Bonnie

They scheduled a MRI ASAP (two weeks) and told me that if his symptoms got worse (loss of continence) they could get him in thru ER if needed.

Evaluating MRIs

From Tethered Cord and Associated Vertebral Anomalies in Children and Infants with Imperforate Anus: Evaluation with MR Imaging and Plain Radiography

Radiology 1996; 200:377-382

MR images were evaluated for the following:

(a) spinal cord position, including location and shape of the conus

(b) syrinx

(c) ventriculus terminalis (identified as an ovoid cystic structure localized to a normally positioned conus) which we do not consider a pathological finding

(d) spinal lipoma, including fatty infiltration of the filum terminale

(e) thickening of the filum (>2mm)

(f) shape of the dural sac.

A diagnosis of tethered cord was made at MR imaging if

(a) the level of the conus was abnormally low (below the L2-3 intervertebral disk space)

(b) the filum terminale was diffusely thickened (>2 mm, usually associated with fat or a “fibrolipoma”, traction occurs from adhesion or fibrofatty infiltration of the filum)

OR

(c) the cord appeared to be fixed by a spinal lipoma.

31 of 86 patients (36%) were diagnosed with tethered cord. Of these, 23% had a low conus with a tethering lipoma, 35% had a low conus with a thickened fatty filum, and 42% had a normal conus position with a diffusely thickened fatty filum. The potential importance of identifying a diffusely thickened fatty filum in these patients is evidenced by two of our patients who developed motor deficits at age 3 and 8 years that improved after surgical untethering and by two patients who developed neurogenic bladders at age 2 and 8 years.

From Surgery of Infants and Children, Edited by Oldham, et. al,, Chapter 83 Rectum and Anus by Charles Paidas and Alberto Pena

Normally the conus is at the level of L3 at birth, ascends to the upper border of L2 by age 5, and remains there through adulthood. Detecting the conus below L3 suggests tethering.

From Marti (MS, RN, CS)

The questions I ask when I request an MRI on a patient is as follows:

How many sacral segments are there and are they normal? (normal is 5) Which ones are missing?

Where does the spinal cord end? (normal is bottom of L1)

What does the end of the spinal cord look like? (should be tapered, like a ponytail, not blunt or wedge shaped.)

Is the end of the spinal cord attached to anything? (abnormal)

Are there any "potential tethering lesions" e.g. lipoma, syrinx, scar

Is the dural sac normal (not tapered or narrow)?

Are there any other vertebral anomalies?

Is the width of the filum normal? (should be less than 2mm)

Getting Copies of MRIs

From Joe (radiologist, father of John , IA, 3months)

A note on any image that is acquired digitally - these are usually archived on tape on the machine on which the images were acquired. They are therefore able to make multiple copies of the same "original" copy. Anytime you go for an MRI, US or CT you could ask ahead of time for a copy of the exam if you know you will be taking it to another doctor. At our MRI center (I am a radiologist) we frequently give patients copies of their exams. This is often to give to their doctor but also sometimes for a second reading. We (the radiologists) also send cases for second readings - it is our policy to pay for the second reading that we initiate with the funds from the original reading (often at a loss). I know that many insurance companies will pay for second readings (just like they will pay for second opinions with other doctors).

Tips Regarding Obtaining MRI Results

From Karen  (mom to Stephen, VATERS, 4)

1) Be sure when you ask about the filum, that the drs. can actually see it! Stephen had an MRI to rule out tc at 1.5yrs. I asked the dr. all of the questions Marti has taught us to ask including whether the filum was thick or tight. I was told it was fine. When Stephen turned 4, we found out that he was tethered - the filum was connected to L5. I was told it had probably been that way since birth. Here is the kicker, the dr. couldn't see the filum on the 1.5yr. old films but he told me it was ok not that he couldn't see it. I have a feeling that the drs. are going to wind up doing MRIs on all kids at risk for tc when they are 4yrs. old or so that they are old enough to see the filum clearly. This is not the first time a surgeon told me that something was "ok" when in fact he/she couldn't see the something in question. Stephen is missing S4 and S5. I had 3 different surgeons tell me he had all of his sacral vertebra when they looked at his MRI films from birth (6 days old). Not one surgeon told me, it was too small or too unclear to see. Be careful! If at all possible, ask the drs. to show you the filum on the film. Otherwise, they may tell you it is ok when they really can't even see it.

2) Get a copy of all MRI radiology reports and neurosurgeon clinic notes. I made the mistake of just getting the clinic notes which said there was no change in Stephen's MRI since the last one but the radiology report said there was a tethered cord. As a result, Stephen was tethered for a year and a half before we knew about it and the neurosurgeon acknowledged it. How did the neuro miss it? See point 3).

3) I would strongly recommend against having an MRI and clinic visit on the same day unless you can get the films from radiology to the surgeon in time for your visit. What happened w/ Stephen is that he had his MRI and then we went over to the clinic to get the results. At this point, Stephen was 2.5yrs. old and we were doing a follow-up on a small cyst. The surgeon called radiology and asked them to check to see if the cyst had grown from when Stephen was 1.5yrs. old. The radiologist told the neurosurgeon the cyst was still the same size. The surgeon gave us the good news and we left. I mistakenly thought we had ruled out tc at his 1.5yr. visit since he got great answers to all of Marti's questions and had no hemivertebra, scoliosis, lipoma, etc. to complicate things. When I got my clinic notes from the surgeon, it said there was no change in the MRI from the last one. But, the radiology report clearly stated that a tc was present. I don't think my neuro ever read the radiology report or looked at the films. This was a pediatric neurosurgeon at a teaching hospital. Please be very careful if you have a clinic visit w/out films present! I will never let Stephen have an MRI again w/out being sure to have the neuro show me the films - then I'll know he looked at them!

From Mary B. (Mom to Andrew)

I wish to second the tips that Karen wrote about. We were assured that Andrew was not tethered. I remember that visit quite well. The Doctor was very rushed (we saw him because he was considered "the best"), he kept leaving the room looking for something, then examined Andrew and checked for sensation around his anus. He said he had good sensation and come back and see him in a year. I never saw him with the films or a report. I am convinced to this day that he never saw the MRI. He must have seen the radiologist report since he knew about Andrew's missing sacral segments. The reason I say this is that after a year of being put off by our HMO for a referral to a neurosurgeon in their network, we got to see a different doctor (he was now 4 1/2 yr. old). I picked up the 2 year old films and hand carried them to the appointment. The new neurosurgeon examined Andrew, and noted neurological deficits in his lower extremities. I asked him after his exam if he had looked at the old MRI, he said he had not and he went and brought them into the room right then. He put them up on the light board and instantly said "well there is the problem, he has a tethered cord" He then pointed it out and explained that andrew needed immediate surgery. I remember so clearly the surgeon saying, "I can't believe (insert the other doctors first name) missed this one". The doctor who saw Andrew when he was 2 1/2 yr. old, is the head of the spina bifida association and heading up the pediatric neurosurgery department in a major hospital. Always insist on seeing the films, if for no other reason than to ensure that the doctor has seen them himself. Andrew has never gained back the sensation that was present at that exam when he was 2 1/2. By the way the same sensation was noted by his surgeon (until he was 3) and noted as absent by the time he was 5.

Pediatric Neurosurgeons

Dr. David McLone, Chicago, (773) 880-4345 used by Gretchen,Roseann, and Nova

Pediatric Neurosurgery

Childrens' Memorial Hospital

2300 Children's Plaza - #28

Chicago, IL 60614

(773) 880-4373

Note: When I spoke with Dr. McClone’s secretary, she said he will see new patients within a week if he is not traveling which he does 25% of the time. She also said that he reserves an operating slot for new patients that same week so you can do it all in one trip. If you send him your child’s films, he will give a reading for a fee but legally they can’t call it a second opinion because he hasn’t personally examined your child. He has cut way back on doing readings and now prefers you to bring your child to him.

Dr. Fred Epstein at Beth Israel in New York (212) 870-9600

Dr. Rick Abbott at Beth Israel in New York, (212) 870-9660 also used by Gretchen

Dr. Dachling Pang at UC Davis Medical Center in Sacramento, (916) 734-0362 recommended by Marti CPNP

Dr. Micheal Scott at Boston Children's Hospital (617) 735-6011 used by Michelle (Mici)

Dr. Timothy George at Duke Medical Hospital (919) 684-5013 used by Karen

Dr. David Frim at the University of Chicago Childrens' Hospital, (773) 702-2475

Dr. Sutton at Children's Hospital of Philadelphia (215) 590-2780 used by Connie

Pediatric Neuroradiologists

From Joe (radiologist, father to John, 3mo, IA)

Dr. Barkovich is a famous pediatric neuroradiologist who is the author of one of the best textbooks on the subject. I have not worked with him or ever met him, but he is a quite well known radiologist. If I had a difficult case, I would consider sending him the films for a second opinion. UCSF in general is one of the best radiology programs in the world.

A. James Barkovich, M.D.

Professor of Radiology, Pediatrics, Neurology and Neurosurgery

Chief of Pediatric Neuroradiology

Tel: (415) 476-5911/8268

E-mail: jim.barkovich@radiology.ucsf.edu

 

Deciding to Operate

The level of tethering indicates the probability of retethering.

Note: In cases where the tc is more than just a filum issue (I believe these types of tc are usually found at birth or soon after), a duragraft may be necessary. If so, you may want to ask your ns about gore-tex. There have been both good and bad reports on it as of early 2001.

Pena

Pena does not recommend prophylactic untethering (patient has no symptoms). He does not think there is hard evidence to support many authors’ claims that untethering positively affects bowel and bladder function. On the other hand, Cathy (mom to Andrew tethered 3 times) says constipation improves dramatically! So did Bonnie Lynn(mom to Patrick).

From Surgery of Infants and Children, Edited by Oldham, et. al,, Chapter 83 Rectum and Anus by Charles Paidas and Alberto Pena

The pudendal nerve is derived from the sacral plexus roots S2 to S4. This nerve is both motor to the external sphincter and sensory to the skin around the anus. Autonomic innervation of the external sphincter is via the nervi erigentes, derived from segments S2 to S4 of the spinal cord.

From Bonnie (Mom to Patrick)

After Patrick started the lactulose his poop got soft but he still didn't go on his own without the BabyLax. That worried me cuz everything that Pena told us, he should have had better results. THEN after his tethered cord was released.... about 6 weeks later I have notice that he has not needed a babylax in almost a week. I never expected that since everyone said the bowel/bladder thing doesn't improve.... I guess it hadn't damaged anything yet.

From Karen B. (Head of PTN, mom to Sammy)

The literature indicates that surgical untethering does not improve bladder or bowel function, but many of these kids also have deficits in their legs or arms or other problems from the tethering. If this happens, you want to untether the cords before any further damage is done. Pena's article mainly focuses on the relationship between the tethered cord and continence, which isn't the only issue at stake.

From Marti (MS, RN, CS)

Let's see if I can explain tethered cord and the role of the filum terminale a little more clearly. The spinal cord is not particularly stretchy; imagine it to be a small piece of rope. At the bottom end of the spinal cord is the filum terminale; imagine it to be a rubber band. They are connected/continuous with each other. During fetal development, the vertebral column grows more rapidly than the spinal cord, and thanks to the stretchy/elastic filum terminale, the spinal cord doesn't get overstretched.

            The filum terminale can develop several problems:

1. It may not be as stretchy as it should be due to increased fibrous tissue or increased fat which formed in it during differentiation. To carry the rubber band analogy further, this would be a very tight or strong rubber band which doesn't stretch much. It is thought that a filum terminale which measures greater than 2 mm across is abnormal, meaning it may be fibrous or fatty. There is controversy in the literature as to whether to release or split the filum at this point. Medicine is not a perfect science, and basically there's still a lot that's unknown. I included a brief medline search on tethered cord (note that Dr. McLone has published many articles) yesterday. The problem with tethering is when it causes overstretching of the spinal cord. The only way you know if the spinal cord is stretched is by symptoms (back pain, incontinence, etc.), or if the MRI shows the cord to end lower than it should. (It should end at the L1-L2 interspace). As the child grows, this less elastic filum may cause the cord to start to overstretch, which would show on MRI by the placement of the caudal end of the cord. If you take your rope/rubber band and stretch it out, at some point the rope will be at it's full length and the rubber band will need to stretch. If it is not very stretchy, then it will cause tension on the rope, and will cause the rope to end lower than it would if the rubber band stretched more. How elastic or inelastic a particular filum is would be difficult to determine.

2. The filum terminale can become fixed to something which causes it to not be able to stretch as it should. The types of things it can become fixed to are lipomas (fat), tumors, syrinx (cyst), or scars. Again, the rubber band cannot stretch if it is fixed to something.

In summary, you don't want the spinal cord to overstretch. The symptoms are subtle, progressive and thought to be irreversible. How do you know if the cord is overstretching? An MRI will show you either that the filum is thick and perhaps less elastic, which may or may not mean the cord is overstretching, and the MRI can also show you that the cord is pulled down below the L2 interspace which is too low and indicates tethering. The MRI can show a potential tethering lesion like a piece of fat or a cyst. Whether any of this gets operated on is subjective, both on the part of the surgeon and the patient/family. Some surgeons will definitely operate on a lipoma which could tether the cord at some point, others would watch and wait. The decision basically comes down to "Do we want to undergo another surgery to prevent a potential problem which is hard to detect, or do we want to wait and watch carefully for the onset of symptoms which will hopefully be reversible if caught early." This is not an easy decision, and other medical problems may take precedence. It does complicate any kind of prognosis for continence since a tethered cord can cause incontinence. Here in our little corner of the world... we have two pediatric neurosurgeons, one of whom has been very interested and excited in our (pediatric surgery) interest in tethered cord. He usually treats/operates on anything that is obvious, e.g. a lipoma, or an obvious tether. He wants to watch and wait on some of our kids who just have a borderline low placed conus but no tethering seen on MRI. The other neurosurgeon waited and watched a large lipoma and syrinx, and when the child developed gait disturbance, it was operated on.

From: Grace (mom to Autumn)

When we were in New York last week (Nov. ‘99) another girl about ten months old had her cord untethered. After they went home she started leaking spinal fluid and had to fly back to New York. She underwent two further operations to stop the leaking. Apparently there is a risk of spinal meningitis. After the third operation, in which they had to cut through muscle she was in a lot of pain. I am telling this story to demonstrate that untethering is not always a simple operation and that it too carries risk. Sometimes untethering may prevent further damage and sometimes no further damage will occur if nothing is done. This is a controversial topic. Our family has decided to hold off for now and to keep an eye out for changes.

Experiences of PTL Kids

Retethering and MRIs Don’t Always Detect Tethering

From Cathy  (Mom to Andrew, 10)

Date: Sun, 12 Oct. 1997 1

MRI's were not available when Andrew was a baby. He was briefly examined for tethering symptoms when he was very small. We were told that it didn't seem to be a problem. Years later, when he was almost 6, he started complaining of back pain. At first we thought it was related to recent abdominal surgery he had had. However, pain continued to worsen and started radiating down legs and arms. After much screaming by me, they finally did an MRI which showed a very tightly tethered cord, lipoma..etc. He immediately had surgery and was better. After that surgery, during recovery time he began to get headaches. Very violent ones that were concentrated on one side. Eventually, another MRI was done and it was determined that he had "Chiarri's Malformation". About 20% of kids with tethered cord also have or develop Chiarri's. He had brain surgery for that and post-op couldn't turn his neck. After months of therapy etc., they eventually inserted two titanium plates into his cervical spine. That has taken care of that. Unfortunately, in less than 2 years from the original untethering, he retethered. Here is the important part - he was having the same old familiar symptoms BUT the MRI showed NO tethering. After much debate and prayer, we decided to let them do an exploratory. Turns out he had retethered cord. It was actually WORSE than the first time. The doctor was stunned because he had actually shaved bone during the first surgery to help prevent retethering and that bone had already grown back. The second surgery they also took a skin graft to put around the dura to help prevent future retethering. We are now 7 months post op.. So far, so good. I'm not sure what the moral of this story is other than tests are NOT always conclusive and tethering can occur later in childhood. It does not always present to an infant or even toddler.

Note: Andrew was tethered again and has his 3rd untethering surgery in Jan. of ‘98. Tethering was diagnosed in Nov. of ‘97 by MRI after Andrew started having back pain and numbness again.

Tethering Years After a Clean MRI

From Dee (Mom to Steven) printed in PTN News Vol. 8 No.2

Steven had an MRI done 2.5yrs earlier (editor's note: approx. 7 yrs. old? definitely not a baby)) and we had been told that his cord was NOT tethered so I assumed we were home free. Around Christmas this year, I noticed that Steven seemed a little more “off center” than usual. Given the hemivertebra, scoliosis, and semisacrum, I just thought it was more obvious because he had grown a significant amount in what seemed like a short period of time. Shortly after Steven started back to school, he came home complaining of leg pain. This is a child, probably like yours, that has an unnaturally high threshold for discomfort. One week later, he wet his bed. Steven has been urine trained from an early age so we knew something was wrong. Steven had another MRI and the pediatric neurologist, pediatric neurosurgeon, and pediatric neuroradiologist all agreed he was tethered. Not that it was obvious to anyone just based on the MRI because of his hemis and missing vertebrae, it was difficult to understand exactly how they had counted the vertebrae on the first MRI to document exactly where the tip ended. To clarify, one way that you can access an anchored cord is by comparing MRIs over time to determine if the cord is migrating up naturally as the child grows. Obviously, that tells you that the cord is not tacked down. Some children have clearer external signs like a mass, hair or dimple on the spine, we had none of these indicators. The linchpin seemed to be the syrinx was located towards the bottom of his cord, that did NOT exist 2 years ago.

Karen  (mom to Stephen, VATER, tc, sm, etc.)

Stephen's leg pain was intermittent before his detethering. Stephen would point to different places on different legs so I didn't take him as seriously as I should have. He was almost 4 yrs. old at the time and we had had 3 MRIs to check for tethered cord - at 1wk, 1.5yrs, and 2.5yrs - which all came back clean - no fatty/thick filum, no lipomas, etc. Stephen complained maybe 2 to 3 times a week starting the last week in August - always after riding his bike and he never pointed to the same place twice. On Oct. 17th, he complained of leg pain 4 times in one day and we hadn't done anything "physical" that day. It was the first time he complained twice in one day and the first time he complained at a time other than when getting right off of his bicycle. I called the ns that day, got an MRI and surgery "asap" which ended up being 11/6. Between 10/17 and 11/6, he started falling down, his left foot turned in, etc, etc. Stephen is a special case because he also had a syrinx so we can't be sure where the symptoms were coming from - the syrinx or the tether. My ns said that for symptoms to be permanent, they have to be there for a long time - months and years.

Need to Redo MRIs Done at Birth and Tethering without Symptoms

From Mindy (mom to Zack, 20 months, VATER)

Date: Wed, 19 Nov. 1997

Zack had an MRI of his spine when he was 7 days old and I was told everything was fine. When I joined the group, I was made aware of tethered cord, its symptoms and its implications. On the advice of those of you who have " been there before ", I got referred to a neurosurgeon at Children's in Chicago and met with Dr. McLone. He looked at Zack's original MRI and said that Zack was too small to see anything. We did a repeat MRI yesterday. Zack shows no signs or symptoms of tethered cord, yet the surgeon told us that his cord is tethered and Zack has a lipoma (Fatty stuff) where it shouldn't be. He is scheduled for surgery on Dec. 11. Zack's surgery should be pretty minor since we caught it so early.

Need to Redo MRIs Done at Birth, Importance of Qualified Interpreter, and Thickened Filum

From Roseann (Mom to Carl.edu)

Date: Wed, 4 Feb. 1998

Carl had an MRI shortly after birth while in the NICU and it was fine. Because of information we got from the pullthru list (i.e., that tethered cord can easily be missed in an MRI of a newborn), we decided to have another MRI done to check for tethering when Carl was 2.5yrs. The radiologist said everything looked normal. The neurosurgeon was concerned about a syrinx, and asked if he could send the films to an expert, Dr. McLone in Chicago. Dr. McLone said not to worry about the syrinx, but that he was concerned about a thickened filum terminale. Because we couldn't get a clear answer from anyone about the significance of that finding, and because Carl was asymptomatic, we decided to do nothing. No one really knows the consequence of leaving an asymptomatic, thickened filum terminale alone - before MRIs, they weren't even diagnosed. *Not* doing the surgery is the conservative, wait-and-see approach - the typical response Paul and I have when we can't get definitive answers. However, I have since learned that a thickened filum terminale is considered a mild form of tethered cord. I found that out on the web (should have written down the URL - it was the transcripts of a meeting about spinal cord anomalies, and IA-associated tethering was covered as a separate type), and it's a fairly new way to interpret the finding of a thickened filum terminale. So, Carl will have another MRI to see if anything has changed. It is my impression that with tethered cord, symptoms can develop as the child grows taller. The cord, being tethered, cannot move freely as the spine elongates, and the distal nerves can get pinched, causing symptoms. Because symptoms can be irreversible, once they develop, I think it is prudent to have periodic MRIs in the case of a less-than-completely-normal cord, like Carl's. So, if the cord is completely normal at, say 1 year of age, I think you can heave a big sigh of relief. If it's borderline, it should be watched (i.e., periodic MRIs). If it truly is tethered, it should be released. As usual, the gray area is what gives us all gray hair.

From Mary (Mom to Andrew, 10 yr. old, HIA)

My son was not diagnosed with his tethered cord until he was 4 1/2. He had a Lumbosacral MRI at 2 1/2. We took the MRI to the "best" Neurosurgeon in Phoenix. He told us that Andrew was missing S5 but said the cord was not tethered. Poised with this information we went on with life until 2 years later when Andrew experienced weakness and tingling in his legs and was suddenly pigeon toed. With the 2 year old MRI, we went off to a different neurosurgeon within the week. This neurosurgeon spotted the tether right off the bat. We found out later the 1st doctor had never seen the MRI. Three weeks later we were in Phoenix Children's Hospital doing the release. The doctor who did the surgery was for the surgery, the other neurologist in the office told us that we just got a bonus surgery. He said it would not have made a difference. I don't agree. We saw improvement in him after the surgery. He has not had further damage since the surgery and has regained some feeling. He walks normal but is slightly left side weak. The surgery should have been done when he was 2, then he would not have intermittent tingling in his feet.

Note: Andrew has 2 deep dimples above the crack in his bottom and the crack is not straight, this is a sign of spinal deformity

Thickened Filum

From: Karen B. (Mom to Sammy)

I'm pretty sure that Sammy also had the thickened filum. I think that the general consensus is that if there are no outward symptoms, the surgery is more of a risk than doing nothing. Sammy had obvious deficits in her right leg, so we felt it was definitely worth doing the surgery. Dr. McLone has a great reputation, so I would go with what he says.

From Heather (Mom to Kyle, 2 /34yrs, HIA, TC)

Kyle had a fatty filum as well. His neurosurgeon (Dr. Hugh O'Donnell - Dupont Hospital for Children) had initially wanted to wait until Kyle was 4 or 5 yrs old to do the surgery. The thinking was that as Kyle grew taller, the more damage the filum would cause to his nerves around the spine. But apparently the new thinking is, the more active the child - the more damage caused. And Kyle is nothing if not active! So they did the surgery this June, when he was 2 1/2 years old. Dr. O'Donnell wants to continue to monitor with MRI's, to make sure that the tissue doesn't re-attach. It was not removed during the surgery - instead it was separated to pull it away from the spine. The analogy the dr used to explain it to us was that the filum was like a rubber band, when it was cut in half it would spring back away from the spine. He said that attempting to remove the filum would cause more damage to the nerves than leaving it in there.

Filum Terminale

From Gretchen (Mom to Franklin, 16 mos., HIA, bulbar fistula)

Date: Wed, 4 Feb. 1998

Franklin has a lipoma on his filum terminale, which is like a thickened filum terminale. Our local neurosurgeon diagnosed it and advised that we take a wait and see approach. Dr. Pena and his neuroradiologist looked at Franklin's films and were adamant that Franklin did not have tethered cord and that we not do anything and, if fact, didn't even need to repeat an MRI. We also sent Franklin's films to Dr. McLone and to Dr. Rick Abbott in New York, who both said that we should operate even though Franklin is asymptomatic. Dr. McLone seems to take a more aggressive approach to surgery. At this point, we have decided to continue to watch Franklin very closely for symptoms (urine dribbling, toes pointing in, etc.) and have MRI's once or twice a year (he is 16 months old and has already had 3). He sees the neurosurgeon every 3 months. We have also been warned that the surgery can cause scarring which can cause more problems than the lipoma. I am not completely comfortable with this decision since 2 very respected neurosurgeons have said that we should operate, but as long as he continues without symptoms and has clean MRI's we will wait. In our situation there is no one "right" answer which makes things much more frustrating. If it gets to the point where Franklin does need the surgery, I think that we will probably go to McLone, but we are not yet to that point.

Dimple over Sacrum, Difference in Legs

From Karen B. (Head of PTN, mom to Sammy)

Sammy didn't have an MRI until she was about 20 months. We kept asking about a dimple over her sacrum and whether it could be a tethered cord, and everyone kept saying no, don't worry about it. It wasn't until she started walking that we really noticed the difference in her two feet and legs, and brought it up to her physical therapist. She was the one who really pushed us to get the MRI, which we did immediately, and it was an obvious tether. While I think that she was born with the level of deficit in her leg, I can't help but think that if we did something earlier it may have made a difference.

Importance of Interpreter, Difference in Legs, Unable to Urinate Temporarily After Surgery

From: Bonnie  (Mom to Amy, 8yrs, VATER)

Amy was diagnosed with tethered cord shortly after birth (by MRI) and the first neurosurgeon we saw recommended that we wait and have the release surgery done when she was 5 or 6 and showing symptoms. The symptoms we were warned to watch for were falling down a lot, and bowel or bladder problems. We took his word for it and got busy seeing to all the other things going on with Amy. (BTW - this guy was not a pediatric neurosurgeon). When Amy was about 5 months old we were referred to a pediatric neurologist in order to deal with her developmental delays. Lots of surgery, etc., in her young life and she needed PT and OT and that sort of stuff. When Amy was 2, this neurologist recommended that we go ahead and pursue the tethered cord. If Amy had not had all the other issues he told us that he would have recommended that she have the release done as early as 6 months to prevent stretching of the spinal cord. It was his opinion that any damage done could rarely be reversed. So we went for another MRI. The new neurosurgeon told us that Amy did not have a tethered cord. We were so pleased to have one less thing to worry about. And another year passes. Amy was a reverse mainstream/medically fragile student at the Cerebral Palsy Pre-school in our area. As part of that program she received a very thorough annual exam by the physical therapist. It was at that time that it was discovered that Amy's right leg was smaller (muscle mass) and 1/2 inch shorter that her left leg. The PT recommended that we have another MRI done for tethered cord as these were typical symptoms. So we did. The new (3rd one so far) neurosurgeon showed me the MRI and even I could see how her spinal cord was being stretched. We scheduled the surgery immediately. Amy did great after the surgery.

Need to Repeat MRI Done at Birth

From Bonnie (Mom to Patrick 2 1/4; VACTERL Assoc.)

They did an MRI on Patrick at birth and told me he was fine. Well to make a long story short, they just untethered his cord last month. I just couldn't get rid of "that feeling". Since his untethering, he is a different kid. He doesn't cry thru PT and he climbs EVERYTHING. His Physical Therapist can't get over the improvement in his movement in just that short time....... and "they" all thought I was nuts... just humoring me with the repeat MRI (all except the Ortho guy who did it) ...

Leg Pain Relieved by Untethering but MRI & Surgery Did Not Show Tethering

From Kathy (Mom to Aaron, 5.5, HIA)

My son Aaron had MRI's when he was 5 months and 3 years old which both read negative for his cord being tethered. He started having leg pain at 4 1/2 and it ended with him having surgery to cut the filium terminale. It resolved the pain. The surgeon said that he saw no tethering while doing the surgery, and that upon cutting the filium it reacted normal, not like it had been tethered. Sorry to make controversy, I don't understand it either. We sent the MRI pre-op films to Dr. Pena, and he confirmed the reading. Please do not get paranoid that this will happen to your child also. I don't know of any other children who had leg pain and a negative MRI also that required the cord to be untethered. I just want to share our experience.

Post Surgery Care

From Karen  (mom to Stephen, 4, and Timothy 4)

Timothy and Stephen both had a filum section at age 4yrs. Stephen also had a subarachnoid stent placed to drain a syrinx. The were both operated on a Monday morning. Stephen didn't get out of the OR until approximately 4pm. Both of them were home by Wed. evening. Timothy had a prescription for Roxicet (pain killer) but we never needed to use it. I don't think I even gave him Tylenol more than once or twice. They had to be flat on their back for 48 hrs. post op. After that, the bed was raised a certain amount of degrees every hour or two. A cath was left in for the first 24 hrs. Once it was removed, we could use a diaper or urinal. The gaiting factor to going home was being able to sit up and walk across the floor w/ help. When we left on Wed., they were allowed to walk and sit up at home as much as they wanted to. They couldn't run, climb, or jump for a while though. After surgery, there were no restrictions on eating and drinking except to go very slow at first because of the nausea the anesthesia causes in some patients. Stephen was eating a lot w/in hours and had no problems. Timothy was nauseous and took a while to be able to keep things down.

From Cindy (mom to Lindsey, 4 1/2, cloacal exstrophy.com)

Lindsey had her cord untethered in May. We were really worried about her having to stay flat for 5 days. We have heard that some surgeons only do 3 days, but we did the 5. She had her surgery one morning and came home the following night. We did get a pediatric backboard from the fire dept. to transport her on in the back seat of the car. I wanted to have her buckled in!!! It was great for carrying her into the house and from room to room. We have stairs, and if it were not for the backboard, they would have been unmanageable. She only weighted 40 lbs, so I could carry her by myself. We had a wagon large enough to pull her around in outside. We had a handyman make a board long enough to insert into her large baby stroller so that we could walk the halls of the hospital, etc. I put one of her old baby bed mattress in the floor of the family room so she would not have to lay on the sofa all the time - plus, the sofa was not firm enough to keep her level enough. She could roll from side to side, and from front to back. We just had to make sure that her head was never higher than her butt. The surgeon did allow her to use a flat pillow. To be honest, for the first 3 or 4 days, she really didn't want to get up. We played a lot, and watched every video made!!!!

From Bonnie  (Mom to Amy, 8, VATER)

Amy was 3 when she had her tethered cord surgery. It went really well - - I was worried about that one more than any of the others because of the issue of keeping her still. We did several things - we got her a bag of small surprises to open each day to help keep her entertained. Lots of story books and small toys that she could play with while lying down. We also blew lots of bubbles - - that was an idea that one of the nurses had. That helped with her breathing since she couldn't sit up which can be real important after surgery. Amy was up and playing 3 days after surgery. Now I understand that it isn't always that easy - there is a slight possibility of spinal fluid leakage which is why getting up and around is done gradually. Amy was unable to urinate on her own for about a month following the surgery. (Note: This also happened to Andrew  after his third untethering and at least one other PTL member) The neurosurgeon said that it was due to swelling and felt that it would go away and it did. We used a tiny self cath (about the size of a cocktail straw) to catheterize her 4 times a day in the hospital and after coming home. It took Amy's Dad and the nurse to hold her down for me to do it the first few times - then the nurse and I could handle it. When we were discharged my husband and I could do it in the morning, late evening, and at night. I had a home health nurse come by in the middle of the day to help. After a few days, Amy decided to cath one of her dolls and after that she would lay there and let me do it by myself. Amy told her doll "if you don't wiggle it won't hurt".

From Kathy (Sam's mom, high IA, 18 mo.)

Sam has finally started urinating on his own 4 weeks after his tethered cord release. We are so relieved

Note: Tylenol has a reverse reaction to the Ditropan and can cause the bladder dormancy to continue longer. See the Pull Through section.

From Mary (Mom to Andrew, 10 yr. old, HIA)

This was Andrew's 6th surgery and the most painful of all. Maybe it was his age. Maybe it was the fact that he had had surgery 2 weeks before for a vesicostomy (could not do both surgeries at the same time and could not put off either one). He spent 2 days in ICU and 4 days in a regular room. He could not sit until the 5th day. He was back on his feet and acting close to normal 2 weeks post op.

Yes, scar tissue massage is one of the best ways to prevent scar tissue adhesions. It is best to begin scar tissue massage approx. 5 - 8 days after surgery, or when the scab formation has fallen off. There are several different techniques that are beneficial, I will list a few of these below. The instructions that follow are for a tethered cord surgery, but may be used on any scar.

1) The Push & Pull: Place two fingers on top of your child's scar. The fingers should be perpendicular to the scar. Gently push the scar toward his/her side. Your fingers should not slide across the skin, they should move with the scar. USE VERY LIGHT PRESSURE, APPROX. 2-3 OUNCES. When the skin stops moving, continue to hold light pressure on the scar for 1 to 2 minutes. Now pull scar toward opposite side, hold 1 - 2 minutes. Repeat, lightly pushing and pulling scar up toward the head, and down toward the feet. You will find one direction is more STUCK than another. Spend more time going in the direction that feels stuck.

2. Push & Pull II: Follow directions as above, however gently push and pull scar tissue in a rhythmic manner holding only for a 1/2 second or less in each direction.

3.Skin Plucking: Lightly grasp one end of the scar between your thumb and the side of your first finger. Lift the scar away from the body, separating it from the underlying tissue. Gently move your fingers side to side for 30 seconds. Move fingers to the center of the scar and then to the opposite end of the scar, and repeat

Retethering

Note: The chance of retethering would depend upon the cause of tethering and other factors. It is not the same for every child. The chance of retethering for a tight filum is about 5% for some of the complex detethers such as seen with spina bifida babies the chance can be 33%.

Symptoms are an important tool, but you can't go by them alone - there are many conditions that have same or similar symptoms. You can't just assume it is tethered cord.

From Colleen (Mom to Molly, cloaca, 21mos)

In regard to the cord retethering, our neurosurgeon recommended that Molly get an MRI every 1 - 2 years to make sure it does not retether because it is definitely a possibility.

From Connie (Mom to billy, IA)

If it is a retether, I know that the MRI alone can't tell you as much, because often a cord that was previously tethered will still look that way since the cord does not spring back to a "normal" position after the surgery. Then the NS has to use the MRI and symptoms to determine retethering. Also, scar tissue can make a retether harder to see.

From Marti (MS, RN, CS)

I asked a neuroradiologist at a conference once about determining tethered cords on MRI and he said one trick is to do the scans both prone and supine and look to see if the cord moved forward or back with the position change. A tethered cord would not move. I haven't asked for this routinely (it would be more difficult to change positions if the child were anesthetized) when ordering scans, but might if the result came back equivocal and we were getting another MRI. Just a thought.

From Caroline

If you decide to take the less conservative approach (not to do surgery), I would personally recommend you find a very good pediatric physical therapist, and have her/him do manual muscle tests (MMT), and take reflexes of the lower body one to two times per year. It is important to get a base line of what your childs strength is now, so that if it changes, you will know to what extent it has changed. (In Dr. McLone's office, it is the physical therapist that does a manual muscle test prior to the surgery, and after the surgery).

After Effects/Side Effects of Tethered Cord

From Karen  (Mom to Stephen, VATER, tc)

There are chapters on urological concerns, bowel incontinence, and orthopedic concerns in books on spina bifida written for parents. The two books I read recently are Living w/ Spina Bifida by Adrian Sandler ('97) and Children w/ Spina Bifida edited by Marlene Lutkenhoff ('99). They were both good but I found the second one's format to be easier to use. Unfortunately, the info on tc itself was very brief but the info on the effects of tc - bowel, bladder, orthopedic - was extensive. I got these books at our local public library. They are approx. $15-20 each. I definitely recommend reading them. There were even good tips on the emotional issues.

Spinal Shock

After spinal surgery, the nerves can be swollen and reacting to the procedure - called spinal shock. It isn't necessarily permanent - or an indication of damage to nerves - they just need time to get calmed down.

Arachnoiditis

From Jane

Much of the information I found on arachnoiditis was regarding arachnoiditis that can follow any spinal or brain surgery. I have heard of people even becoming tethered following spine surgery for herniated disc due to scarring likely due to postop arachnoiditis. My daughter's situation is a little different because she had arachnoiditis prior to any surgery. They have no idea what caused it sometimes it is secondary to meningitis but to our knowledge our daughter never had that either. Arachnoiditis can be localized to a small area, e.g.around the surgical site, or it can be widespread as likely is the case of our daughter. Wherever there is arachnoiditis, there is the potential for scar tissue to bind down spinal nerves or even the spinal cord. From Jean Goins (Mom to Ellen(5)TCS, nuerogenic bladder, arachnoiditis)LMC list Ellen's arachnoiditis was diagnosed during her 2nd surgery. She did not have a myelogram. We chose not to do it after we looked up info on them. We figured why do it if there is no cure anyway.

Defining Muscle Weakness

From Caroline

Pronating Feet/Hyper Extended Knee

From J

Pronating his feet means that he is walking on the inner part of the foot. Because of this, he is snapping his knee back to a position (hyperextended knee) that looks like he is almost bending it backward. This is only happening with his right knee though he pronates bothfeet. Flat Feet Flat feet (lack of arches) seems to be common in children w/ tethered cord. From Caroloine I will try and explain from an anatomical educated guess, not from experience! The toes would most likely begin curling first (flexor digitorum muscles innervated by S2-S3), pointing of the foot would occur next (gastrocnemius/large calf muscle gets innervation from sacral nerves S1-S2), which would lead to heel cord/tendon tightening. Becoming 'flat footed' would probably be a complication of the arch flatening out secondary to "toes curling, and foot pointing. From Mary(mom to Andrew) When the nerves are damaged to a tendon it tightens up. When the Achilles tendon tightens up it causes flat footedness. Muscles, tendons and ligaments need proper nerve control to grow and stretch properly. With Andrew's first tether his tendons got tight and did relax a bit after it was released but his Achilles tendons were still way to tight so they were lengthened when he was 6. He still cannot flex his feet as well as a normal kid, but it is much better than before. With the second tether his toes would (he says painfully) curl under and freeze for a while and then relax. This looked horrible and reminded me of patients with head injuries. Spasms from the nerves being stretched I believe. This stopped after the surgery last july.

Sources of More Information

Sacral Anomalies/Tethered Cord

www.neurosurgery4kids.com/tethered%20spinal%20cord.htm#filum

www.lfsn.org Lipomylomeningocele Family Support Group

www.tetheredcord.com

http://www.pain.com/ covers pain management

http://jinglesweb.com/TCS/ (neurosurgeon's familiar w/ TCS)

http://www.neurosurgeon.com/ (database of neurosurgeon's world wide)

http://pedsurg.surgery.uab.edu/cme/lbh/lbh.htm (Alabama Children’s Hospital)

http://www.bcm.tmc.edu/pednsurg/disorder/tethered.htm (Texas Children’s Hospital)

http://www.neurosurgery.org/focus/jan01/10-1-nsf-toc.html (Jan. 2001 Neurosurgical  Focus Magazine)

http://www.sbaa.org/html/sbaa_med-update.html (article on sb occulta)

From Karen B. (Mom to Sammy, Head of PTN)

There is a group for kids just with TC, called the LMC-TC Support Network. For more information, you can e-mail Pam at Pamela.Young-Carriere@nrc.ca

From Marti (MS, RN, CS)

Dr. Pang's article entitled "Sacral Agenesis and Caudal Spinal Cord Malformations" in Neurosurgery, Vol. 32, No. 5, May 1993. He describes 34 cases of sacral anomalies and classifies them into two groups: those with the sacrum ending at S1 and those with S2 and lower present. The lower sacral anomalies (paradoxically) had a much higher incidence of tethered cord. (Which means, that the more "mild" the sacral agenesis, the more likely a tethered cord may exist). I would recommend it to your neurosurgeon; it is the most comprehensive explanation of sacral anomalies that I've seen (I'm only a little biased since I am privileged to work with Dr. Pang). My own article on tethered cord (Anorectal Anomalies and Spinal Cord Deformities) can be accessed through www.apsna.com, in resources, continuing education. I'm happy to answer any questions related to the article since it was written for nurses.

From Jeana

I was doing some research on tethered cord and I found this article to be somewhat informative. It is written mainly for adults with TCS, but there is some pertinent info for children. http://www.geocities.com/HotSprings/4456/madsen.html

 

1. MEDLINE/HealthSTAR 1995 - 2000 McLone, DG.Images in Pediatric Neurosurgery. Lipoma of the nervous system. Pediatric Neurosurgery, 2000 Mar, 32(3):163. (UI: 20327407)

2. MEDLINE/HealthSTAR 1995 - 2000 McLone, DG; La Marca, F.The tethered spinal cord: diagnosis, significance, and management. Seminars in Pediatric Neurology, 1997 Sep, 4(3):192-208. (UI: 97465081)

Abstract: Tethered cord is the result of fixation of the spinal cord, which limits motion in the caudal-rostral direction. Most children either have cutaneous markers or a predisposing condition. Prophylactic release of the spinal cord can prevent the long-term disabilities associated with this condition. Although delayed release, following the onset of a neurological deficit, may reverse some lost function, it is unlikely to restore bladder and bowel function.

3. MEDLINE/HealthSTAR 1995 - 2000 La Marca, F; Grant, JA; Tomita, T; McLone, DG.Spinal lipomas in children: outcome of 270 procedures. Pediatric Neurosurgery, 1997 Jan, 26(1):8-16. (UI: 98026966)

Abstract: Spinal lipomas are a common cause of spinal cord tethering. Recently, prophylactic surgical removal of spinal lipomas has been questioned, especially of the conus medullaris. Unfortunately, few statistically significant series have been reported. A total of 213 children with spinal lipomas were operated on at the Children's Memorial Hospital in Chicago, Ill.,USA, on whom 270 procedures were carried out between 1975 and 1995. Th status of these children was retrospectively reviewed to determine the differences in outcome between patients prophylactically operated on before the onset of symptoms and those operated on after the onset of symptoms. Fifty-five patients presented with a lipoma of the filum terminale and 158 with a lipoma of the conus medullaris. In the filum terminale group, 28 were asymptomatic at the initial operation, and 27 presented with symptoms. Of the asymptomatic children with filum terminale lipomas, none worsened after surgery, and all remained asymptomatic throughout follow-up (mean follow-up: 3.4 years). Benefits were also observed for the symptomatic patients in this group as no cases of further deterioration were noted, and 5 patients returned to normal clinical status. In the conus group, 71 patients were asymptomatic at initial surgery, and 87 presented with symptoms. In the case of conus medullaris lipomas, 9 of the 71 children who were operated on prophylactically, later deteriorated (mean follow-up: 6.2 years) and required a second untethering operation which resolved all symptoms in 4 cases. Thus, 5 of 71 deteriorated, while 66 remained normal (93%) throughout the period of follow-up. On the other hand, of the 87 patients operated on after the onset of symptoms, 36 (41%) deteriorated further and required subsequent reoperations. In these 87 children, the final outcome at the end of follow-up (meanfollow-up: 6.6 years) showed that 20 (23%) patients had deteriorated compared to initial presentation and 44 (51%) remained at initial clinical baseline, while 23 (26%) improved or returned to normal clinical status. Prophylactic surgery in the case of the asymptomatic infant with a spinal lipoma showed a clear benefit. Good outcome was also observed when surgery was carried out after the onset of symptoms. Prophylactic surgery also had a better general outcome by actuarial calculations when only patients with a follow-up of more than 5 years were considered. Deterioration occurred in 5 (16.7%) of the 30 children with a follow-up of more than 5 years, while 25 (83.3%) remained normal. Furthermore, in cases which had prophylactic surgery, there was not only a smaller incidence of deterioration requiring a reoperation, but this group of patients also experienced a longer time interval between initial surgery and the need for reoperation compared to the patients operated on after the onset of symptoms. The authors conclude that spinal lipomas should be operated on as soon as possible on a prophylactic basis, and careful and constant follow-up should be carried out to permit prompt reintervention in cases with deterioration.

4. MEDLINE/HealthSTAR 1995 - 2000 Byrd, SE; Darling, CF; McLone, DG; Tomita, T.MR imaging of the Pediatric spine. Magnetic Resonance Imaging Clinics of North America, 1996 Nov, 4(4):797-833. (UI: 96436578)

Abstract: An overview of MR imaging of the pediatric spine is presented with a systematic approach to the analysis of spinal dysraphic disorders. An introduction to the most commonly used MR imaging techniques, with an emphasis on the newer pulse sequence of cine MR flow of the cerebrospinalfluid and embryogenesis of the spine and spinal cord, provides the orientation for diagnosis of this common pediatric disorder.

5. MEDLINE/HealthSTAR 1995 - 2000 Byrne, RW; Hayes, EA; George, TM; McLone, DG.Operative resection of 100 spinal lipomas in infants less than 1 year of age. Pediatric Neurosurgery, 1995, 23(4):182-6; discussion 186-7. (UI: 96432141)

Abstract: A retrospective analysis of 100 children followed at Children's Memorial Hospital, Chicago, who underwent surgery for a spinal lipoma was performed. The mean follow-up was 5 years. We found that an operation performed during the 1st year of life with the goal of untethering the spinal cord and debulking the spinal lipoma was safe and effective, whereas a cosmetic (nonuntethering) procedure always led to delayed postoperative deterioration (symptomatic tethered cord). Of the infants that presented with motor, urologic or orthopedic symptoms, 39% improved, 58% stabilized,while 3%. worsened as a result of surgery. No asymptomatic infant deteriorated postoperatively and 93% of these children remained symptom-free at follow-up (mean follow-up was 44 months). The overall outcome of infants after untethering procedures in this study was significantly better than the natural history of spinal lipomas. Several risk factors were identified that may predispose children to delayed postoperative deterioration: an initial cosmetic procedure; the presence of preoperative symptoms, and the presence of a lipomyelomeningocele.

6. MEDLINE/HealthSTAR 1990-1994 Byrd, SE; Darling, CF; McLone, DG.Developmental disorders of the Pediatric spine. Radiologic Clinics of North America, 1991 Jul, 29(4):711-52. (UI: 91288767)

Abstract: Developmental disorders of the pediatric spine are a group of congenital malformations commonly referred to as spinal dysraphism. These malformations are characterized by incomplete or absent fusion of midline mesenchymal, bony, and neural structures. They can be classified according to the presence or absence of an associated back mass. A detailed analysis of the embryology, clinical findings, and radiologic characteristics of the common forms of spinal dysraphism is outlined.

7. MEDLINE/HealthSTAR 1985-1989 Kaplan, WE; McLone, DG; Richards, I.The urological manifestations of the tethered spinal cord. Journal of Urology, 1988 Nov, 140(5 Pt 2):1285-8. (UI: 89037435)

Abstract: The tethered spinal cord is an entity with potentially grave neurourological implications. Presenting urological symptoms include incontinence, symptomatic urinary tract infections and stool soiling. These symptoms may be the first to herald a tethered cord. The patients with previously repaired myelodysplastic defects are particularly prone to development of this lesion. We correlated urological history with preoperative and postoperative cystometry in 20 myelodysplastic children. In this study we noted that clinical symptomatology and urodynamic parameters improved in 60 per cent of those children who underwent cord untethering. A better result was evident in children whose condition was repaired promptly.

8. MEDLINE/HealthSTAR 1985-1989 Karrer, FM; Flannery, AM; Nelson, MD Jr; McLone, DG; Raffensperger, JG.Anorectal malformations: evaluation of associated spinal dysraphic syndromes. Journal of Pediatric Surgery, 1988 Jan, 23(1 Pt 2):45-8. (UI: 88172001)

Abstract: The early recognition and treatment of correctable lesions of the terminal spinal cord in patients with anorectal malformations may preserve important neurologic function. Tethered cord and intraspinal masses are detectable with the use of high-resolution ultrasonography in the neonate. Fourteen infants and children with anorectal malformations and associated spinal dysraphism have been identified in our institution over the past 7 years. Six patients had cloacal exstrophy, and eight had imperforate anus (four high and four low lesions). The spinal lesions caused symptoms in only seven children; progressive neurologic deficit in five, and urinary incontinence or retention in two others. Five asymptomatic patients with cutaneous abnormalities on the back were studied and two were discovered during scoliosis evaluation. Imaging techniques included high-resolution ultrasonography, computed tomography with and without metrizamide myelography,and magnetic resonance imaging. Spinal sonography was highly accurate in the neonatal period. The application of ultrasonography can be of great advantage in early screening of patients with anorectal malformations and, in some cases, may eliminate the need for invasive imaging techniques.

9. MEDLINE/HealthSTAR 1985-1989 McLone, DG; Naidich, TP.Laser resection of fifty spinal lipomas. Neurosurgery, 1986 May, 18(5):611-5. (UI: 86231367)

Abstract: The value of laser resection was assessed in the last 50 of 128 consecutive cases of pediatric spinal lipoma. In this series, there was no mortality. No patient suffered increase in neurological or urological deficit. Postoperatively, 8 of 20 patients with prior motor deficit (40%) had substantially improved motor function. Two of 17 previously incontinent patients became continent of urine (12%). Use of the CO2 laser reduced the length of operation, the intraoperative blood loss, and the degree of manipulation of the spinal cord and nerve roots. Most of the fat could be removed successfully from the liponeural junction, permitting more nearly anatomical removal of the intramedullary component of the lesion and greater ease in replacing the cord into a reconstructed arachnoid-dural canal. In the authors' opinions, proper management of the patient with spinal lipoma now requires early prophylactic resection of the lipoma and untethering of the spinal cord.

10. MEDLINE/HealthSTAR 1985-1989 Naidich, TP; McLone, DG.Working and learning together: neuroradiology and neurosurgery. Pediatric Neuroscience, 1985-86, 12(6):286-8. (UI: 88068134)

Similar Problems

Syrinx

From Syringomyelia Connections

Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.

From Bonnie

I found the following websites which may also have information that will be useful for you.

http://062800.ninds.nih.gov/patients/Disorder/syringo/syrinsum/htm

www.apsna.com/Resources/Articles/fledderman2.htm

www.pressenter.com/~wacma

 This has a list of doctors recommended by their members

www.neurogsurgery.org

http://nyneurosurgery.org/staff/r_abbott.html

http://nyneurosurgery.org/syrinx/syrinx.htm

www.boston-neurosurgery.org/pediatrics.html

http://cpmcnet.columbia.edu/dept/nsg/PNS/Welcome.html

 has a link to syringohydromyelia http://cpmcnet.columbia.edu/dept/nsg/PNS/Syringohydromyelia.html

www.waisman.wisc.edu/child-neuro/index.html

www.medmark.org/ped/ped2.html

www.medmark.org/ns/

1-800-ASAP-282, American Syringomyelia Alliance Project Inc., P.O. Box 1586 Longview, Texas 75606-1586

http://neurosurgery.mgh.harvard.edu/pedi-hp.htm#Syrinx, Spina Bifida/Syrinx/Hydrocephalus

Spina Bifida Occulta and Sinus Tracts

From Karen B. (Mom to Sammy, Head of PTN)

Neural tube defects are those that are related to the spine such as spina bifida. They are the ones that are linked to folic acid deficiencies in the mom. Many of our kids do have them as part of the IA. Sammy was said to have spina bifida occulta, which basically means that she had a dimple over her sacrum, but it didn't cause any neurologic impairment of her legs, etc. When they repaired her tethered cord, she did in fact have a sinus tract (an opening) from her spinal column to the outside. It could have potentially been a very serious problem if it had gotten infected. From outside, it looked like a pinprick, right in the middle of the dimple, but no one thought it went anywhere. I know that many other kids in this group have the spinabifida occulta diagnosis as well. It's kind of like the chicken and the egg...what causes the impaired bowel and bladder function? The imperforate anus, or the lack of proper nerves from the spinal defects? This is why the addition of sacral defects makes the prognosis for bowel control plummet in these kids.

Chiarri’s Malformation

About 20 % of kids with tethered cord also have or develop Chiarri's (from Cathy , see above)

From Syringomyelia Connections

Chiari malformation (also called Arnold-Chiari malformation) is a rare congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, are longer than normal and protrude down into the spinal canal. Chiari malformation may be associated with many other anomalies including myelomeningocele, syringomyelia, and spina bifida. Hydrocephalus (increased intracranial pressure) may also occur. In most cases, symptoms begin during infancy, however onset of symptoms may be delayed until adolescence or adulthood. Symptoms usually include vomiting, muscle weakness in the head and face, difficulty swallowing, and varying degrees of mental impairment. Paralysis of the arms and legs may also occur. Adults and adolescents with Chiari malformation who previously were asymptomatic may show signs of progressive brain impairment as they grow older, such as involuntary, rapid, downward eye movements. Other symptoms include dizziness, headache, double vision, deafness, an impaired ability to coordinate movement, and episodes of acute pain in and around the eyes.

Websites for Chiarri’s Malformation

http://www.geocities.com/Athens/Acropolis/3605/RIGHT.HTM

http://www.geocities.com/HotSprings/2830/index.html - World Arnold-Chiari Malformation (ACM) Association

http://neurosurgery.mgh.harvard.edu/pedi-hp.htm#Syrinx - Spina Bifida/Syrinx/Hydrocephalus Homepage

http://www.geocities.com/HotSprings/2830/cases2.html - ACM/SM PERSONAL CASES

Somosensory Evoked Potential Test for Blockage in Spinal Column

From Mary  (mom to Patrick HIA, 2.5yrs

Date: Mon, 2 Feb. 1998

Patrick had a normal MRI at 18 months. His gait has gotten worse and so we are having a test done tomorrow that I've never heard of. It's called Somosensory Evoked Potential test and from what I understand, it tests the nerve impulse as it goes thru the spinal cord and to the brain. Our neurologist said that she has had patients that have had normal MRI's and then this test showed that there was a "blockage". They have to sedate him for the test, so it's pretty much an all day thing.<