Posted 14 February 2018 - 09:17 PM
New to this disorder, so have some questions. I have an 18 year old son with non verbal Autism who got sick with what we thought was a stomach virus or bug last may ( 2017) he seemed to recover from the vomiting just fine, but continued to have diarrhea....this continued over the summer and into the new school year. During this time I went to the Dr at least 4 times, saw the allergist ( thinking it was a food problem) and even asked about a stool test, but was not given one for him, but she did prescribe medicine for pinworms, since I had said he was scratching his bottom in his sleep and after bowel movements. Pinworm medicine did nothing ( because he didn't have pinworms) and the issue got worse to the point where he was also vomiting quite a bit, and having 8-10 watery stools a day. Primary Dr sent him to GI and he was diagnosed with Giardia, and C Diff at the same time......14 days of Flagyl, screaming his head off, behaviors I have not seen in years assumingly from the parasite die off, and we thought he would finally get better....but he didn't. Now after testing several more times for parasites, giardia, c diff,...nothing has come back positive. His calprotectin levels are very high...last one I did was 900, but it was down from 1500, but up from the original one I had done right after the flagyl, which was 500. Dr just threw me some Imodium for him and said there was nothing he could really do. He has been doing much better, but what we are dealing with now is several liquid floating foul smelling bowel movements in the Am right as he wakes...I tried 1 pill of Imodium and it did nothing, then the next night I tried 2, and it worked, no watery diarrhea! I called the compounding pharmacy I had used for the flagyl and asked if they could compound me some dye free liquid Imodium, and he said he would, but remembered me from the previous month and suggested I give rice water to see if it would help firm up the stools in the AM because he didn't think imoduim is something that I should give long term. Sam is gluten/dairy/soy/corn/peanut free and has been his whole life due to issues with the gut starting at about age 18 months, so I already follow a very strict diet for him. The Dr never formally diagnosed him with PI IBS, but im pretty sure this is whats happening. Any suggestions would be appreciated, his life is hard enough as it is without this crap injected into it and I so want him to get better. I purchased some acacia fiber to see if that works also, but have not tried it just yet...still holding out hope the rice water will kick in and work for him.
Sam's mom Sarah
Posted 14 February 2018 - 09:59 PM
My 13 year old daughter has had GI issues her entire life...but after a trip to Mexico that unsettled her a bit, she got hit with a bad stomach virus Nov 2016. Since then terrible stools and cramps/gas. GI also threw Immodium at us, which I wasn't too pleased about. I researched this to death and found a product called Silicol Gel (Amazon sells it) and I can't believe how much it's helping her. It absorbs toxins in the gut. Something to look at. Good luck! So frustrating.
Posted 16 February 2018 - 10:47 AM
I looked at that product, but it has a lot of preservatives in it, and he is so sensitive to things like that. I am still using rice water, and it seems to be working, although, last night I tried a new probiotic, and of course, this morning he had diarrhea again......im pulling the l glutamine and probiotics for a little bit until we get the diarrhea in the am completely under control. called the dr yesterday for another calprotectin test to be done.