This is my son, E.
He has a condition called FPIES, which makes him allergic to food. I know. It’s crazy, right? I help folks eat better and use food as medicine and my son can’t eat. WHAT ARE THE ODDS?! Oh, Universe. You have a sense of humor.
According to the FPIES Foundation, FPIES is:
- Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.
In real life, this means E eats very few foods. In fact, we view every new food as a potential reactor until we know better. We introduce a new food and hold our breath for a few weeks until we are positive it’s safe. Sometimes it is, sometimes it isn’t. Typically, children outgrow this FPIES by the time they turn three, but it is becoming increasingly more common for children to struggle until they turn seven, and sometimes even beyond. I wrote about our story (part 1, part 2, part 3), with sincere hope to provide a safe space for families who have children with special concerns. FPIES is our story, but there are countless conditions and special needs our children and families face daily.
Every life matters, especially the smallest among us. With compassion and awareness, we can fight for all children to have a seat at the table.