This is the story of a child with toilet issues, and our journey in resolving them. I share it for anyone who may be as lost as I am in helping a child with this. It can be embarrassing for the child, a self-esteem issue, and I have felt completely helpless when toilet training just doesn't work.
LJ has been having toilet issues since August 2013. Actually, it has been off and on his whole life, but you've read most of what happened in earlier posts. I think for awhile we were in the "healed" zone...I haven't written in almost 2 years! But this past year, I started homeschooling and we moved, and well, blogging on the Gut Girl was forgotten in the midst of our chaos. Oh, and I have a toddler running around constantly creating havoc, so by the end of the day, I've forgotten what it was I was supposed to do, if it wasn't chasing her.
So we went to the urologist for daytime and night time enuresis (urine incontinence). At the time, that is all it was. Ironically, it took us 3 months to do this despite the fact that my husband works in this field. He claims he knows nothing since he treats adults, not kids. She diagnosed him with bladder spasms. She prescribed a stricter diet, taking out dyes and melons in addition to the other things he already does not eat for optimal gut health. She also prescribed Detrol, but explained there were 20 other drugs that he could try if this didn't work. So we tried it. It helped some, in that he just went to the bathroom less often, so technically he was "drier". If I didn't remind him every hour, he still had fewer accidents. Then I doubled it per her instruction to see if it would help at night as well, since we were still having major issues at night, despite double pull ups. Then I noticed, he basically never went to the bathroom at all. So yes, it made him drier. It made him so dry, he never went, except at night. I started having this niggling feeling something else was going on.
Somehow, I came across this book called "It's No Accident" by Steve Hodges on Amazon's website. I started reading some online, then had the book shipped to me. It is a fabulous book, and I highly recommend it. It clued me in on many things, and helped prepare me for what to do next. The premise was that bladder spasms were rooted in constipation. Well, I knew one of the side effects of Detrol was constipation, and all the dots started coming together. I read some of the book, and after 30 pages, even this gut girl could not read more about pee and poop that night. So I skimmed through the rest, and decided before we tried edemas and Miralax or went to the G/I doctor who I knew would laugh at me for requesting an x-ray, we would try a Magnesium protocol. He had also started having significant meltdowns and bowel accidents this spring, and I had started charting both his behavior and his toilet habits each day (well, I printed it out, he charted it). So we did Magnesium glycinate, which is a chelated form of magnesium, and a good form for any that have struggled with diarrhea. While that was not my current concern, based on his past history, I was afraid too much Magnesium would not be good for him. I introduced it very gradually, also because he is so sensitive to so many supplements and drugs, and has regressed behaviorally and with toilet training on some. Although, I am not sure how much worse we could have gotten. My husband suggested giving him Magnesium Citrate, only it didn't work right away. In fact, it hardly did anything after an adult dose. We scratched our heads a little, since he should have acted like the night before a colonoscopy. He started having multiple meltdowns a week, he had complete urine and bowel incontinence, and he started napping. So we started making the doctor rounds. I was starting to freak out. Not only were his autism symptoms worse than they'd been in 3 years, the naps concerned me. He also has an immune deficiency, and last fall his other immune numbers were not great.
I will skip the part about the other doctors and go straight to the G/I appointment. First of all, if my son did not have significant behavioral symptoms that indicate his autism and are a relevant symptom of what is going on with him most of the time, I would completely leave it out of his medical records. From the very first, the G/I dismissed his G/I symptoms as autism, told me going twice or less a week is not constipation, and dismissed his immune deficiency and food allergies as irrelevant. Now, if you know anything about food allergies or immune deficiencies (um, hello, 80% of your immune system is in your G/I system...did she miss that in med school?), you know that the G/I system is always relevant. So after some crying and begging and pulling out the Pediatrics supplement (HER medical journal) on G/I symptoms in kids with autism from 2010, she finally agreed to do an x-ray. She warned me if it was clear, that his symptoms were probably all behavioral. And then it came back not clear. Not even not clear, but he had fecal impaction halfway up his ribs. He had Mag Citrate the week before, the new vitamins the neurologist gave him had been making him go for a week, and he had had a bowel movement 30 min before the x-ray. This kid was seriously impacted. She prescribed Miralax and senna. Ok, we have a new plan.
But soon we are waiting for our prescription company to send us the Miralax (why pay $20 when you can pay $5?). My husband didn't want to wait, so we did Magnesium Citrate again. Nada. A few days later, the Miralax came, but I was house-bound with the kids due to meltdowns and naps, and forgot to get the senna. She prescribed 8 scoops. Everyone I have talked to has never heard of anyone being prescribed 8 scoops of Miralax for a clean out. So we gave it to him. Nada. He went twice, and went on his merry way. He should have not left the bathroom for hours. I started giving him the maintenance dose of 1/2 scoop twice per day. While the first few days were better, by a week, the meltdowns were back. I called the doctor about doing another x-ray and I was getting worried the Miralax wouldn't work either. The nurse called me back and we talked. She said to get the senna, try again, and she would get me in for an x-ray within the week. I breathed a sigh of relief ...I was not crazy that these things were not working!!! I got some senna, and we went for Round 4 of cleaning LJ out. It worked!!! Only now, the next job is getting his body to do it regularly, and on its own.
And we are still working on that this week...but I think the moral of this story is, follow your gut. My gut said, my son's behavior was the result of his body not working correctly. My gut said, he could not help his accidents. My gut said, he needed help. And I am so thankful that I read that book, begged the G/I for an x-ray (a recommendation by the book, "It's No Accident"), and pursued help for my son despite the skeptics. I believe in God, and I am so thankful that He led me to the answers.
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