I am 40 years old, SWCAH since birth. I can help you with any questions you may have. I was one of the first children in Seattle to be diagnosed prior to death after birth. I have always had good Endo doctors, but many times I felt like a science experiment.
Just a couple of things that are more important then others;
I ended up only 5' 6" when everyone in family is tall. I was stress dosed alot when young due to normal kid sickness, ie. flu, colds. Make sure they watch his growth very close.
I had testicular tumors at 20 years old. Both were thought to be cancer, were not, part of meds caused tumors. Your son will need to keep close eyes on testicals, and let doctors know asap.
Although I have a very low sperm count (common to CAH)I have two kids, boy and girl neither have CAH.
please email with questions at broadbandsrvc@verizon.net. I will be more then happy to answer.
Take Care!
