Hi all...

My 6yo daughter has non-classic CAH. Her bone age is on the "high end of normal" and has been read anywhere between 8yrs 10 months,  and 7yrs 10 months. She has some pubic hair and occasional acne, slight fatigue, but generally no other symptoms. When she was initially tested, her 17-oh was 1,080, and went up to 12,400 stimulated. We did not treat her at that time. 2 months later she was tested at the NIH, and her 17-oh was 455; 7,680 stimulated. After talking to the NIH, it turns out that treating her at this point really is optional, as her initial 17-oh is actually in the range of "normal," even without treatment. Apparently the biggest concern is whether or not her bone age will advance and/or she will get other symptoms...The NIH has said we can do the "watch and wait" thing, or treat her now...My husband and I decided to start treating her, and I started her on the Cortef recently. She has a very difficult time tolerating it. She has had severe GERD ever since she was born, and takes Prevacid twice a day, but even with that and taking the Cortef with food, she gets severe abdominal pain and nausea...Starts gagging and even vomits a bit about 45 minutes after any dose at or over 3.75mg at a time. The NIH had recommended 10mg per day--there is no possible way that can happen with her stomach problems. And what about when we have to stress dose her?? I called the NIH back about this problem, and they had no real thoughts as to what to do to change matters. They thought maybe she could stay on 1.25mg three times daily and have labs drawn in February to see where she is at...She might end up being okay on that low dose...But you know, I’m really thinking that maybe we shouldn’t treat her at all. If she can’t tolerate an adequate dose of the Cortef, why are we even using it, you know? Why cause adrenal insufficiency when she isn’t getting much in the way of benefit from it? Additionally, even on this very low dose, she is eating a TON of food. She has gone from 47 pounds at the end of November, to 53 pounds already. We can’t keep her out of the fridge--she’s starving! This seems ridiculous, but...What to do?? I don’t want her to suffer from the CAH. My husband and I aren’t overly tall people, so 4’11, which is my daughter’s predicted height, doesn’t seem too bad. I don’t know...I am torn...

Does anyone have any thoughts on this?

Christine