Max, Age 17 months

My son, Max was diagnosed with FPIES after I stopped breastfeeding and he started on milk-based formula and we started introducing solid foods. He had terrible gastrointestinal reactions which almost ended up in the ER on a couple different accounts. With the diagnosis, we had to switch to an elemental formula which was double the cost of cow’s milk formula. He would go through a 19.8 oz can of Nutramigen every 4 days with his eating schedule at 8 months old. Now, at 17 months old, he has switched to the toddler Nutramigen to continue to ensure he’s receiving proper nutrition as a milk replacement. His other FPIES allergies include eggs, bananas, and sweet potatoes. This has been a challenging road not only from a nutrition perspective, but from a cost perspective of realizing the added cost of elemental formula for potentially years ahead. One of the first questions that I asked when discovering the need for elemental formula was does insurance cover this? Unfortunately, no. It should be as this is an essential part of my son’s growth and development. Without elemental formula, he would not receive the proper nutrition that is typically available in cows milk and soy and his digestion wasn’t developed enough to handle other milk such as goats milk. It’s daunting when you receive a diagnosis such as FPIES and realize you are dependent on a much higher cost product for an unknown duration of time. As every mother out there can attest, we all want to advocate what’s best for our children’s health and development.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.