Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it the higher cost of specialty food that they had to eat because it was medically necessary due to ingredient load… that five-year total was upwards of over $120,000. We spent more every month on medical nutrition for our children than we did on our mortgage, taxes, insurance, car payments and car insurance combined. Because of their fragile medical state, One parent had to be home at all times. Meaning income was significantly altered by the inability to hold down a second stream of income outside the home. Thus using up all funds saved in Sep Ira/ retirement accounts. We made too much to qualify for secondary Medicaid insurance, and didn’t have proper diagnosis codes to file for Katie Beckett waivers in New Hampshire for medical assistance. Due to lack of medical testing to confirm food protein induced enterocolitis syndrome and mast cell activation syndrome, my children fell through the gaps of what is needed to provide physical proof determining need for amino acid formula. As we have no need for feeding tubes, which is the criteria with which they would pay…. we were left to pay out of pocket for their medical nutrition.
- Rylan, Age 10