Unexplained Chronic Diarrhea in 2yr old

[kbell2241]

I have a 2 year old who was diagnosed at birth with an extremly rare genetic abnormality. She has an unbalanced chromosome translocation. Generally, she is a healthy, happy kid, but in July she had suddon onset diarrhea. She lost a little over 2lbs and we could not stop the diarrhea. The pediatrician and our peds GI tested her stool and blood for all of the obvious causes. They tested immune disorders, pancreas function, and scoped her lower and upper GI. All tests were negative/normal. The scope showed that she has 3 small polyps in her small intestine and lots of inflamation in her colon (caused by the diarrhea). They felt that none of these things explained the cause. We ended up putting in a central IV and giving her TPN for nutritian and stopped all formula (she is Gtube fed). After about 6 weeks with the TPN and steroids, the diarrhea improved. Two weeks later she was put on amoxicillin for a sinus infection. After 2 doses, the diarrhea was back, and bad! We stopped the amoxicillin, but the diarrhea has continued for another 3 weeks and she has again lost 2lbs. Our doctors are out of suggestions, and say that this is just how it's going to be. I refused to believe that there is no source of this diarrhea and therefore nothing that we can do about it. My daughter is miserable. She is losing weight, not interested in eating, tired all the time, and her balance is now effected (she keeps falling over). Please help!! I would be willing to look at any options. They have also ruled out giardia, ceiliacs, chrohns, and ibs. They think it is 'non specific colitis'.

[mammo]

You need to get your daughter to the top Pediatric Gastroenterology Unit in the country and this is Cincinnati Childrens Hospital.  People bring their children from all over the country to be treated there, as they are the best.  We have a genetic colon disease in our family, and I have been told by several hospitals, doctors and geneticists that this is the premiere unit for gastro problems in children.  They have a McDonalds House for families to stay in.  You are right in not accepting what the doctors tell you, keep going!!  It took a fourth gastro doc to properly diagnose my son.  If I can help in any way, please let me know.  I know several doctors there and can get you all the info you will need. Take care.

[patient915]

Welcome to the gastroenterology community!  I don't know anything about her genetic problem so I don't know how that is affecting things.  Was she ever having diarrhea when she was being fed by TPN?  Sorry I can't be more of help.