Joy Meyer, DTR Co-Founder/Co-Director The FPIES Foundation.
Samuel was diagnosed with FPIES at 11months; although he had chronic illness for months prior to the diagnosis, we didn’t know what it was that was making our little baby so sick.
Samuel is our 4th and youngest child, 2 of our other boys had varying levels of milk protein intolerances so when Samuel started to show sensitivity to my breast milk, (gassy, “colicky”, spit-up, projectile vomit, explosive/loose stools, disturbed sleep) we assumed he had the same troubles with dairy through my milk. A trial of milk-based formula confirmed this, with projectile vomiting and diarrhea and an increase of his intolerances and symptoms. Reflux crept in, so we tried to add rice cereal to his diet, thinking this would control the reflux activity of a breast-fed only baby. He seemed to tolerate this for a few days and then started to refuse it. He then had increased spit up, fussiness, disturbed sleep, and increased reflux. This was the course of things for the next few months – every effort we tried to control his symptoms, seemingly every new food introduced resulted in him getting progressively worse. We started to wonder if we were missing something, that this was more than just milk protein intolerance that we suspected. We needed help. Our pediatrician consulted with Gastroenterology specialists and a trial of reflux meds and elemental formula was started. This is also when he had his first endoscopy which ruled out Celiac disease and Eosinophilic Esophagitis, but did find non-specific inflammation and lymph nodular hyperplasia. At the GI recommendation, we took him off of breast milk and all foods and put him on a strict elemental formula-only diet. For Samuel, this is when things continued to get worse and yet clearer.
The elemental diet was necessary and helped us see what his body was doing. Samuel stayed exclusively on the elemental diet for several months, however often still getting sick. After a few months, we were advised that his intestinal inflammation would be healed and we could re-start him on foods. We re-started with rice…. because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on the acute vomit reaction. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. Although this was very disheartening and scary for us to watch him, it did bring us one step closer to the diagnosis that would help us manage his symptoms
No one knew what was wrong with our little boy. Finally, after many months of searching, our Pediatrician suspected a little-known condition called Food Protein-Induced Enterocolitis Syndrome (FPIES). A trip to an Allergist familiar with this diagnosis confirmed our suspicions and he was given the diagnosis of FPIES.
Samuels’ FPIES is a chronic diagnosis for him. Many children typically outgrow this condition by the first year of life, most by 3-6years of age although there are several children that do not. Unfortunately, Samuel is one of them that has not yet outgrown.
Even after his diagnosis, it took another 2 years to find him safe complete nutrition, being allergic to one ingredient or another in commercial formulas – we literally didn’t have food to feed him! While continuing to trial foods to fill in the gaps in his nutrition, he needed to be on Total Parental Nutrition (TPN) for a time for the gut rest and healing he needed. Then, at 3 years old, he transitioned to a Gastrostomy tube and started to truly thrive on a blenderized diet of his still very limited, but more nutritionally adequate, diet.
Over the years, his diet has expanded and at 11 years old, he has shown signs of outgrowing many of his allergies. We remain hopeful he will one day conquer this diagnosis. While he still lives with it, it has not slowed him down. Samuel is a kind, witty, cuddly, caring, active young man who loves Legos, playing soccer, basketball and piano.