My niece has PKU, which is Phenylketonuria. It is a rare inherited metabolic disorder in which her body doesn’t produce Phenylalanine Hydroxilate like ours do. Because she doesn’t have that enzyme, protein that we normally convert to Tyrosine in our bodies, builds up in her blood stream, concentrating in her brain. Her body does not get enough Tyrosine. If the protein level, the phe, builds up too high in her brain, it can cause brain damage, lots of physical discomfort, psychological abnormalities, mental retardation, and eventually death. She is on a diet low in protein to control that part - she uses lo-pro foods to replace much of our food. She also drinks a formula rich in Tyrosine called Phenyl-Free.
The problem is that now that her father is retired from the Air Force, they are having trouble getting their insurance (Tri-Care) to give her the phenyl-free she needs to maintain her diet. They say it’s a nutritional suppliment. It’s not. It’s a necessity.
Does anyone know of other PKU kids who are using Tri-care? I would love to be able to give my sister an email address of anyone who could help her.