I recently connected with a neice who lives 1500+ miles away. Thus I am new to this segment of medicine. I started researching Fpies so I could support her in this journey. Her son can eat nothing! Neocate, water and ice. Apparently even a few crumbs sends him into shock and the E.R.
So I started digging on line and came across another condition which I think could be the likely villian and am wondering if anyone on this site has had a doctor follow this possibility.
Its called MCAD/S.
Mast cell activated disorder/syndrome
It is not reconisable on standard tests, such as those for FPIES.
Although the tests are the same (blood/biopsies/bonemarrow/throat/intestines etc) the lab methods are different and extreamy specific. Meaning they MUST be looking for MCAD to find it.
So have any of you had doctors look for this?
Has it been ruled out?
Another question, I see alot of kids with the gastor tube and backpack for feeding. What are the pro's and con's?
To me it appears it would give my neice and her son a better quality of life vs. 20 bottles per 24 hours.
To the experts who may read this, what is the difference between Fpies and MCAD in the various gastrointestional tract?
What if a patient had MCAD in all segements of the tract? It seems to me it could explain my neices sons issues, what do you think?
My father died of a MCAD, and I'm about to be tested for it.