Hi, I am sorry that you have not found anyone who can share experiences just now.
I don't know anything here to help you because I have no experience of this. I feel for you because it must be helpful if you could talk with someone who has some experience in this area. I hope that someone does see your post who can relate to your situation.
I found this but I don't know how helpful or interesting it is. You would think that there would be a support network for families with children who have similar conditions, an on-line network at least.
I feel for you when you say that your little boy gets upset. He sounds so dedicated to mastering the toilet. I am sorry that your GP has not been supportive, as you put in your previouse post.
You must be so proud of the little guy, good luckxxx.
Potty Training a Child with Impaired Gastric Motility
Cyd Skinner, Parent
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Po tty training a child with a fully functional intestinal tract is supposed to be the first big challenge for most parents. For us parents of children with impaired gastric motility, it is far from the first struggle and way beyond what another parent would call a challenge. My daughter Chloe was born in 1988 with Hirschsprung's disease. As a result of her subsequent surgeries, she is left with one half of her large intestine and difficulty managing bowel movements.
Until Chloe was 3-1/2 she had 10 to 20 squirts of snake like, soft stool each day; always foul smelling and never fully formed. Our pediatrician, surgeon and then a pediatric gastroenterologist in Philadelphia told us first that it was a virus, then a food allergy and then the final answer -- that it was all psychological and we must have been too stringent in our potty training. I have talked to a frightening number of other parents who have had similar experiences.
While I knew the doctors were wrong, I did not know where to turn next. I had designed behavior modification programs professionally, and as I am not a physician or a surgeon, I tried to attack the problem using my own background and knowledge. It was a classic case of the drunk looking for his keys under the street light, but it worked. Chloe was essentially potty trained within a week.
Chloe's program has been used by two other Hirschsprung's children with similar success. One child, however, after becoming potty trained had problems which necessitated an ileostomy. While his doctors do not think the toilet training program had anything to do with it, I would caution other parents to be very careful. Because of all the unique potential problems our children face, please have your doctor approve this program before trying it with your own child. I can only say what has worked for my child, as one mother to another, not as a professional. This program may not work for every child, but I cannot imagine what we would have done without it. The program is as follows:
- Pick a good two-week period when you are virtually always near a toilet. The first few days/week you will probably have to stay home altogether.
- Buy 10 to 20 pairs of underpants, and plan to wash them daily. It is also important to dress your child in clothes they can easily pull down themselves.
- The morning you are ready to start, tell your child pleasantly, but not with tremendous excitement, that the time has come to get out of diapers. Let them know this is a good thing. Your child will need to buy into the program; attitude is everything. It is important not to get too emotional about the whole program. You're bound to have conflicts with other events during the day and keeping the potty a separate, neutral issue will help.
- Determine the amount of time your child can stay clean, and then have her sit on the potty at intervals just a bit shorter than that time. Chloe could regularly stay clean for about a 30-minute period, so every 25 minutes I had her sit on the potty.
- By sitting on the potty for up to 15 minutes at a time, every 25 minutes, we were bound to catch a squirt sooner or later. Eventually I just knocked some stool that was stuck to her anus into the toilet bowl and called that her first success. You have to start somewhere and you need to breed success. This program is all reward based. If she wasn't able do anything, that was okay and she could try again later (25 minutes).
If your child experiences pain and/or irritation on their bottom, you can try using toilet paper with lotion in it (such as Charmin Plus) or Tucks medicated pads to wipe off what the toilet tissue misses. Also, some children may get cold and shiver while on the toilet this long, so keeping towels warm in the clothes dryer for the first few days can be helpful.
- Chloe's reward was a chocolate covered peanut. You need to choose something the child really likes, is able to experience immediately and then it's gone so she wants to earn another. We kept no other sweets in the house at the time, and chocolate covered peanuts were a novelty to her. I also heaped on the praise for a few minutes, saying things like "Hooray! You did it!"
- More important than any success that first day was getting her to buy into the game. Of course this is much easier with a 3-year-old than it would be with an 8-year-old. Somewhere in that first day Chloe genuinely started to push, and began producing more squirts at one time. For more squirts I gave more peanuts, with a limit of two or three for a lot of squirts. This helped her try to do more at one sitting.
- I didn't want her to have to go potty every 25 minutes. So after two to three days, as she was putting out more stool when she did go, I very gradually started pushing back the next time she was to sit on the potty to 30, 35, then 40 minutes, etc.
- By the end of that first week Chloe was essentially potty trained, but with several accidents per day. What came next, while continuing with the peanuts, were potty prizes; small wrapped toys from the dollar store. At the end of each day, if she had kept her underpants clean, Chloe was allowed to choose one prize from a hidden basket.
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As the potty prizes became more important, I cut back on the peanuts by just forgetting them if Chloe didn't mention them.
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After maybe one or two months of nightly potty prizes, I ran out. I told Chloe that because she had been doing so well for so long, she could go to the toy store the next day and pick out whatever she wanted. This basically ended the initial potty training.
If your child has problems again down the road, as she may very well, you will probably have to return to the reward system for a week, two weeks or longer. The more severe the problem, the more slowly it will take them to get back on track and the more frequently a prize will be needed. As the child gets back on track, you'll need to wean them from rewards until eventually they are fully retrained.
What I've described is an all reward based program. Heap on the praise when there is a success and quickly bypass the accidents. When your child does have an accident, the idea is not to react at all, or to be mildly supportive. You can say something like, "That's okay, everyone has accidents sometimes." Being too supportive after an accident runs the risk of your child wanting the comfort and support more than the potty prize.
The rewards you choose must be based on your own child and it does get trickier as they get older. While I could never have imagined this three years ago, Chloe now has a problem with constipation! She can go weeks without a bowel movement. Now we put a check on the calendar for each day she has a reasonable bowel movement. These add up and when she has 14 checks she may go to the toy store for a small toy. It must seem as though we have spent a fortune on toys, but the truth is we spent much more at doctors' offices with much poorer results.
Chloe is now a beautiful, happy 7-year-old who loves soccer and swimming and is in the gifted program at school. She also has a brand new baby cousin with Hirschsprung's disease. She's going to make a great cousin.
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