Not the greatest answer, but I am finding that the best people who know about CAH are the one who make CAH a big part of their life. I went to the CARES conference in Indianapolis last year (held at Riley Children’s Hospital). You might think of going there, as they have experience  with CAH to back up their Children’s Hospital.

I lived in Pittsburgh, and have used Children’s Hospital too often. I know they are great. But to have such extreme diagnoses is outrageous. Find an expert (look a the list of consulting physicians to CARES, that is a place to start your search).

I wish my kids didn’t have CAH.