We will see a GI specialist and an allergy specialist to find out more, but until then here is what we know:
What is FPIES?FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy, in which food is considered a foreign invader and the body “fights/attacks” it until it can violently expel it; although the exact mechanisms are still not well understood.
Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These can lead to: lethargy, low body temp or fever, hypo-tension, and in severe cases, sepsis and shock. And still yet, many children also experience many discomforting symptoms while the body "fights" this reaction and these can include: extreme stomach pains, gas, runny stools with or without mucous or blood, persistent hiccups, acid reflux, rashes, sleep disturbance, and agitation.
FPIES is a clinical diagnosis (based on symptoms), there is currently no test for it.
Good Morning America featured a little boy just this week, who has this rare syndrome. He can only eat 10 foods. Just like Jake, his parents had to take him to the ER on several occasions when he ingested certain types of foods.
Jake's symptoms were pallor, lethargy to the point he scared me to death, limp, sleep disturbances, vomiting, throwing up blood, and constipation to name a few. So far the offending foods include rice cereal and peaches. Two hours later, our boy turns a white/grayish color, turns limp, eyes not focused on anything, then projectile vomits. It is scary and it breaks my heart, but this is his life and we will make the best of it.