Does anyone else have an infant with FPIES?

FPIES stands for food-protein induced enterocolitis syndrome. Very briefly, it is a delayed response food allergy that causes vomiting often to the point of bile, sometimes with diarrhea and mucous/bloody stools. DS was just officially diagnosed on Monday and we are headed to the pediatric allergist next week at CHOP.

I'd love to hear from other families who have dealt or are dealing with this rare form of food allergies.