My son looks like any other toddler; happy, active, destructive. Seeing him you would never know that his first year of life was a struggle. He was very sick and was in a lot of constant pain, until his diagnosis of FPIES just before his first birthday. FPIES stands for Food Protein Induced Enterocolitis Syndrome. It is a form of food allergies but what makes it so unique is the reaction. My son could eat something his is allergic to, also called a trigger food, and seem just fine. But two to three hours later its a different story, that is when his symptoms become apparent and an ER visit is required. The easiest way to describe it is that it is his intestines that go into a sort of anaphylaxis from the trigger food. He will start with violent vomiting until he turns ghost white and passes out. The days that follow usually mean bouts of diarrhea and keeping him hydrated to avoid further dehydration.
We now work with a great team of doctors through Rady’s Children Hospital, and my son’s health and growth is thriving. He is slowly building up a list of safe foods and hasn’t had a reaction in months due to our diligence of making sure to keep trigger foods away.
There is no cure for food allergies of any type and there is so much unknown about FPIES. You can learn more about the condition and other families stories through the FPIES Foundation. Another great resource is IAFFPE, the International Association for Food Protein Enterocolitis. Any donations to these foundations helps with research and treatment of children with this condition.