I know how you feel & the "system" is very frustrating.  Our wonderful children are being denied healthcare making it extremely difficult for parents, knowing this is a life-threatening illness. Maybe an SSI attorney can help you in your area or someone from your pediatric endo’s office.  Find out if you can contact any patients with CAH who have qualified for SSI.  All I know is the education has to change, the healthcare system needs to take care of us, and mostly insurance has to change.  It’s not working & my child died...whether she could have been saved, I will never know. Part of me blames myself, part of me is angry with my exhusb & everyone else who did nothing to help us. My prayers to you and your grandson, I am so glad you have custody.