Hi Rebecca: I am sorry for your experience. Being a Physician (pediatrician) myself and a father of a girl with SW-CAH I feel believe it or not sometimes overwhelmed myself getting answers or for that matter doing lit reviews.
My daughter is on Orapred (prednisone). You are right that it is more potent than hydrocortisone but the effects on bone density and growth is more related to suppression of 17-oHP then the steroid itself. Some endos use a more potent steroid such as Decadron even for small children.
You have to see THE COMPLETE PICTURE. that is growth with height and weight, levels of 17OHP, androstenedione levels and renin and BP. Everything needs to fit in perfectly. it does not matter what steroid is being used. 17OHP should be less than 500 but not normal because that causes oversuppression and loss of height. A good endo should be very capable of managing this. Recent studies have shown that women who are compliant and not oversuppressed can get very close to their genetic height. However the pathways involved with steroid responses are too complicated and vary from patient to patient.
I can tell you that all the lit searches are great, but they inform you too much and ultimately one starts questioning everything. While this is not necessarily a bad thing, a good endo has tons of experience , which is better than any research articles you will see.
So keep a professional attitude with your endo. try to get answers from him towards his plans for your daughter. Question those plans and ask if there are any alternatives. Hopefully if he is truly sincere he will appreciate your vested interest and wont feel threatened by your preparedness otherwise you can look for another one.
