My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at 9 months old that we had food allergies, I had to fight for doctors, diagnosis and coverage for my son. Finally at 18m old my son was diagnosed with FPIES. At the time we were only avoiding 2 foods… now we have a list of 18 foods that he is allergic to that we have to avoid. When Ronan was 21 months old he was put on formula to replace his milk and help him gain weight. After switching to the formula Ronan’s speech has gotten better (he was severely delayed) and he looks healthy. Once he ages out of WIC (they cover the cost of the formula for now) I don’t know how we will afford his food as he eats a very specialized diet of vegan options that is very expensive. WIC covers the formula for now… but once he ages out of WIC we will have to cover all the cost due to tricare not covering the formula and stocking it at military pharmacies.
- Eliot, Age 11