Saturday, August 4, 2012
Took her two weeks ago to see a Metabolic Geneticist at Riley Childrens Hospital to see if he could figure out what is wrong with her or at least find a clue. They are doing full genetic testing on her to see if something like that could be the cause, but I think he is thinking its GI related because her symptoms would most likely be worse than they are. But there is the possibility she has a gene that is damaged rather than missing and that could cause more minor symptoms. So still waiting for those results. I think this was mainly to rule stuff out before her pedi GI does more tests, or at least lead us in the right direction. We have them scratching their heads and they have been discussing it trying to figure it out. The biggest issue they can't figure out is that it takes 3-5 days for her to react...usually. However, lately she seems to react sooner than normal. I sure hope they figure it out quick though because the bills are racking up big time and not sure we can keep doing it if it's just going to get more and more expensive. We are 100 percent sure it has something to do with fructose but as the geneticist and gi doc suspect, could be all sugar in general and the fructose just sets her off more than glucose or other sugars, which includes carbs. So it's been a rough road, but we owe it to her to figure it out. So wish us luck we find an answer, and very soon!
Posted by Megan at 6:03 PM