Gisela,
I don't think you mentioned how old your daughter currently is.
The only way you will know for sure whether she has CAH, is to have the blood tests done...but I can understand your fears.
Some of the problems of not being treated though (should she have CAH) is, she may not be as happy with a 5' height outcome as you have been. For you, a diagnosis for whatever reason, was not made until twenty-one years old but you now have the responsibility of knowledge that there is an outside chance that she could have CAH. How may she feel in the future when she realizes that you have the same condition, especially if she is diagnosed late and it becomes detrimental to her?
Untreated CAH has a high rate of infertility...so eventually she would need to take medication if a pregnancy, was a desired goal.
There are other medications apart from dexamethasone she could have. It is more likely that for a child they would administer hydrocortisone which can be given in fairly fine-tuned doses. Obviously you are a little disillusioned but there are some very good CAH experts in London and I'm sure she'd be in excellent hands.
The fact that you have written on this board means you are seeking to be the best possible advocate for your daughter.
Please let us know the outcome of your journey!
