Update to..My son's story..Anyone else going or gone through this?

avacura15

Hey ladies just wanted to give you an update on my boy. We did some allergy blood testing and everything came back negative. Yesterday we went back to see the head GI doctor and at this point they have no idea what to do. There is nobody else at his age with the same problems so they have nothing to go on. They did say there is one test that they haven't done but its for a condition so rare that none of the GI docs have actually seen it. When I asked the docs the name of the condition they didn't even know as its so rare. At the moment they are researching on how to go about conducting this test. I will keep ya posted.

shotzie

I remember your previous post about your son. I'm so sorry you still haven't gotten any answers. Have you heard/read about FPIES or EoE? Not sure if your LO's symptoms might fit either of those conditions...I'd never heard of them until this board. 

avacura15

Thanks for the info. I just read the info on FPIES. He's never vomited but he definitely has the bloody diarrhea.

As far as the EoE, they did an endoscope and everything in the upper part of his body looked fine. His large intestine is covered with ulcers. Still don't know what his small intestine looks like but the blood is always bright so they think its just his large intestine.