Robertahttp://caresfoundation.org/what.html
This web site explains the different types of CAH and I think that Kelly has a daughter with on-set CAH. My children have the severe salt wasting form of CAH at birth and I have boys. My daugther died at age two from an adrenal crisis and fever.
The John Hopkins web page for CAH is also very good about explaining the different kinds of CAH. And the PEN (ped endo nursing society) has booklets about CAH. They booklets are great. Because I have shown the doctors information and get better care for my children. For example the doctor was not prescribing the right amount of sodium for my children. I had to call Dr. Maria New office and they consulted together to get the right amount. My son was in very bad condition without the right amount of salt. He was not gaining weight and lossing weight... I thought he was going to die, too.
If you case - it is obvious that the doctor is NOT prescribing the right amount of cortef. (get a lawyer). Perhaps cortef is not the right medication for her and she needs a stronger type of hydrocortisol. I would get another doctor to look at her (ped endo doctor - with training and experience in CAH). I hate to say the surgery word.... but this is something to check into and get an advice from a "expert". The experts are ... Dr. Maria New in New York; Dr. Pang in Chicago; and the doctors at John Hopkins in Baltimore.