"F-PIES" like apple pies. What?

I heard back from the allergist and they officially say Jenson does not have a soy allergy. So I say, "Can you ever get a false negative on the blood work?". I'm assured you can't get a false negative and there is nothing to worry about. I then say "I'm very skeptical and find it hard to believe he's not allergic to soy since he throws up every time you feed him straight soy/soybeans". So then they say, "Well he could have this rare thing called F-PIES (food protein induced entercolitis syndrome)".

I'm thinking... SERIOUSLY???? another rare thing that I've never heard of and can't remember the name of, let alone pronounce??? why did you not mention this might be something he could have earlier??? would you ever have told me about this if I hadn't challenged your assessment???

So I go on-line and do some research and get the definition of what F-PIES is:
Enterocolitis is inflammation involving both the small intestine and the colon (large intestine). It's a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. Upon removing the problem food(s), all FPIES symptoms subside. The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley. A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. The next time they feed their children the same solids, the dramatic symptoms return.

Are you kidding me???? Jenson has presence of LCH cells in his small intestine and colon. This is exactly what was happening when we would feed him soy/soybeans...extreme reaction of vomitting. We obviously removed them after figuring out it made him vomit regularly.

We're now suspecting products with soy fillers or soy lechitin (like most everything shelf stable in the grocery store including cow's milk formula, most hot dogs, most crackers/cookies, all chocolate, etc) were part of what kept causing him to have these unexplainable rashes on his face which have gone away since we've eliminated any kind of soy/soy fillers/lechitin from his diet. His diet has now been 100% soy free for over 3 weeks and guess what? No rashes or other strange symptoms.

Before we started chemo almost a year ago, the doctors had always struggled with why in Jenson's case his skin breakouts were improving (like his body was starting to self-correct) and then all of the sudden the vomitting started and he wound up with an incredibily rare case of LCH in the GI tract. They had said repeatedly it just didn't really make sense and was different than other cases they had seen.

In my mind, it starts to make sense if you put this F-PIES information into the puzzle as well. It certainly doesn't change the fact that Jenson has LCH (histiocytosis) but it is the first thing that does explain why he so rapidly got so much worse and wound up with a case of LCH in the GI tract... when his GI tract was attacked by F-PIES reactions his body must have overfired.

I'm feeling better at least feeling like this is a major insight into what's happening. Not sure the doctors believe me on this one, but I don't care. I know this is one of the first things that has made sense and I've already seen results since we eliminated soy 100% from his diet.

Just goes to show you, follow your instincts and push doctors if something feels wrong as they are typically trained to look for the most common thing and rule out things more rare. This is now the second major time doctors have told me "not to worry" and my instincts have told me otherwise.

Lesson: Don't be afraid to challenge things.

Kristin