Re: By: Emily H (9:37 PM 01/04/2011)
Welcome to the group! Although I'm sure there's a lot of 9 years of life that we're missing in this short introduction, I can tell that you've been through a lot. We have a few parents in our group of older children and I hope you can get to know them and help to find some answers.
Sounds like the biggest thing you need is to work with a good GI and dietician who can help her to find a diet that will help keep her hydrated. I know of some older children and even adults who've needed some tube feeding to supplement normal diets to stay hydrated... Sometimes just for a while so that the intestine can adapt. Others have benefited from just adding elemental formulas and drinking fluids specifically designed to maximize hydration.
Where are you located? What's her diet like?
I don't recognize the abbreviation UAB. What is that?
Best of luck. Hope we can help.