My Son's Journey with FPIES

By Sara, United States, February 28, 2014

I have twin four-year olds. Only one of them has FPIES - or Food Protein Induced Enterocolitis Syndrome. FPIES is like a food allergy for the gut. It's hard to diagnose, there are no tests, just symptoms. Symptoms like profuse vomiting about 2 hours after eating the food. Vomiting lasts for hours. Diarrhea. Shock. Dehydration. Low blood pressure. Lethargy. My son was 4 months old when eating rice baby cereal almost put him in the hospital. Feeding him became like playing Russian Roulette, we never knew which new food might cause a reaction. We didn't get a diagnosis until he was one year old, because FPIES is rare and most doctors haven't heard of it.

My son is "lucky" in the FPIES world. He only has 6 trigger foods: bananas, rice, chicken, turkey, eggs, and fish. He also has a myriad of other IgE allergies to contend with. There are many children who have no safe foods and only can survive on breastmilk or special elemental formulas. We are hoping that doctors can begin to understand what causes FPIES and how to prevent it in future generations.

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