The AA Diet, Low Fiber and Fecal Compaction

The AA Diet, Low Fiber and Fecal Compaction I would just like to start off by saying that I believe that most of you SMA Type 1 parents will be able to take their children off of Mirilax and other stool softeners by adding fiber and more hydration to your child's diet. There are always contradictions but I have calculated a lot of diets and the one thing missing from the AA Diet is an abundant fiber source. After 61/2 years of using Mirilax and Pedialax Shira is now having consistent bowel movements on her own. Please read about our experience below and try adding fiber to your child's diet I think you will be amazed! Also remember to make sure your child is calculated optimally and properly hydrated before adding fiber to your child's diet. Consult your physician or dietician first;) Hi everyone we are back from our trip to Disney. In all we drove over 4000 km this trip and it was not without some health glitches I would like to discuss. As many of you know I calculate a lot of diets for people. Well I’m sorry to say that I was negligent when it came to Shira’s diet and it only drove home the importance of following my own theory of 1) calculate optimally and 2) re calculate often. I had measured and weighed Shira about a month before leaving but never got on it. I just figured I’d up her water in her diet to deal with the low humidity and heat in California. Unfortunately Shira developed a severe case of constipation! It was so bad she didn’t pass a bowel movement for almost 2 weeks. A grapefruit size ball was sitting in her stomach and at her worse she refluxed. HOW I DEALT WITH SEVERE CONSTIPATION The first thing I did was re calculate Shira’s diet. This is embarrassing for me but I’m sharing it to show the importance of re calculating diet often especially when our children have growth spurts. Shira was about 425 mls of fluid under where she should be. The first thing I did was added 425 mls more water to her diet. This still did not allow Shira to pass a bowel movement. After about 3 days I was giving Shira enemas using a 60 ml syringe in the bathtub of the hotel. I was doing this 2 or 3 times a day with no luck! I was getting worried to say the least. Luckily we had a few contacts down south and we ended up at Kennedy Swann’s doctors Dr. Cramer. We started Shira on the same drug they use for men needing a colonoscopy and we thought this would clear Shira out. Of course I’m very concerned about adding so much more liquid into Shira’s diet with such a constipated stomach. Our kids are stomach breathers and we try and avoid doing anything that will hamper their ability to breath easily. Anyways after giving Shira the oral medicine every 4 hours we also tried dealing with the constipation using a suppository (dukolax) from the other end. Shira started passing a little stool but not enough! We took Shira to the ER at Choc and had her x rayed and boy was she constipated. The ER doctor at CHOC was very thorough also and was interested in Shira’s diet believe it or not. He advised I give Shira something easier on her stomach like milk of magnesia but also increase Shira’s water (which I had already done) and add fiber to her diet. Maxine went to the healthfood store and purchased some TripleFiber by renew life and we added a dose to her daily dose of food. At this point I was still giving Shira 3 enemas a day with no results. Shira had refluxed and I had started her on antibiotics I brought because she also had a fever. I’m freaking out at this point also because of insurance reasons. I just wanted to get home in case we needed to be hospitalized. So now we had increased Shira’s daily water intake, added fiber to her food and I started giving her Senna leaf to make her have a bowel movement and I was still giving her half a dose of Dukolax every day. I was going through whole boxes of pedialax and giving shira an enema and nothing was working. Finally by the time we hit Portland about 8 days after Shira’s constipation started she had a bowel movement. I kept up with the pedialax, dukolax and Triple Fiber and by the time we got home Shira was having some strong consistent bowel movements. I also started to notice that Shira was now having a regular bowel movement in the morning without the use of Mirilax or pedialax! It’s now been 5 days since we have used any drug and the only thing different in Shira’s diet has been the addition of the fiber as well as the diet being calculated optimally and timely! I have calculated a lot of diets for parents and like Shira they were all on mirilax (or some other form of stool softener) or pedialax but no fiber in their diet. I would now like to recommend that anyone on the AA Diet with a Mickey Button (G tube) add a dose of fiber to their childs diet I believe you won’t have to use anymore Mirilax. Shira was on Pedialax and Mirilax for almost 61/2 years and we are off it completely now and her stool is healthier than ever! The brand of fiber we use is TripleFiber by RENEW LIFE. REMEMBER CALCULATE YOUR CHILD’S DIET OFTEN AND OPTIMALLY AND ADD FIBER TO IT! Let me know if you can also remove your child from Mirilax after adding fiber to their diet but before adding the fiber consult with your doctor and make sure your diet has been re calculated to insure your child is properly hydrated!