Came back from the hospital and not much new to report. My son had 7 more vials of blood taken and the next test will be a CT scan in 3 weeks.
Had my questions addressed by the nurse practitioner. Still have not gotten to see a GI doctor. She pretty much said that they don't believe that yeast overgrowth problems exists or that the thimerosal mercury still in some vaccines ( my son got a meningicoccal vaccine + 2 other vaccines and the severe gastro problems started within 48 hours of the shots) can cause gastro- intestinal problems, at least from the many cases that she has looked at.
She thought from the tests done so far, it wasn't pointing toward Crohns or Ulcerative Colitis, also didn't look like an ulcer but that one is a little tricky. She also told us that even though my son is better off gluten, he needs to stay on it so that they can see if it is damaging his gut. That was bad news because school will be starting in a few weeks and we have been doing everything to get him functional for that.
She told me that the digestive enzymes we had him on, the chewable kind, were not worth anything because they denature in the gut rendering them totally useless. Only the ones with the very thick coating like the prescription ones used for Cystic Fibrosis patients are effective. I need to do more research on the enzymes as everything I have seen to date- the chewable, capsule, pill form over- the -counter ones have been effective in many, many people.
The immediate concern was that my son has dropped 12 lbs in 7 weeks. A lot of it due to the fact that he just can't tolerate food and has developed an aversion to eating which I don't blame him.
She wanted me to put him on high calorie smoothies, the problem is that almost all recipes she gave me require milk and Carnation instant breakfast. He can't tolerate soy milk either. I'm going to have to revamp the recipes with rice ice cream and rice milk. I am hoping he can tolerate that.
Now it is just a waiting game. I really don't know what to think as yes, I want an answer but I don't want my child to have some serious disease . I also don't want my child to have IBS and have to possibly face a life of never knowing when the next D attack will hit, of having to map out every bathroom location, not being able to eat the food he loves, not being able to go on camping trips or travel for fear of an attack on the plane, bus, car, whatever. This doesn't even address the impact of working or going to school. I don't want him to have any of it, I just want him to be well!