JudyFirst take a deep breath. Everything you are feeling is very normal so don’t feel like your overreacting. My son is almost 9 now but I do remember the overwhelming feelings in the beginning. I think the best piece of advice I can give you is to remember that this is your child’s life so try to step back a bit and realize that relaxing a bit will do you both some good. If you stay feeling uptight then your daughter will pick up on that. That may even be some of what she is responding to. That being said however, trust your instincts. Even though you are new to this you know your child better than the doctors. If your doctor is not supportive of questions then they are not the right doctor for you. I used to call my doctor all the time in the beginning (not the pedi but the endo) with all sorts of questions. I tried to stay calm and rational when I spoke with her so that she would take me serious. I just made it clear that I wanted to be the best for my child and that being informed was the only way I felt I could do that. She has always been very receptive to me for that. I don’t feel that I am an expert on CAH even though I feel very informed with regards to my son and his specific needs so I don’t feel that I can or should say what I feel may or may not be going on with your daughter (don’t mean to frustrate you). But your questions are valid and you should contact your doctor immediately even if to just put your mind at easy. Ask for blood work to be done now to double check. I remember in the beginning with my son we did blood work every week, then monthly and then just every 3 /4 months when we saw the endo. We would do the blood locally with the assistance of our pedi and they would convey the results to his endo. There is no need to always see the doctor but keeping an eye on the blood is a great indicator in the early stages until the child has been well controlled for awhile. My endo felt that until she knew exactly how my son would react to the meds and develop she wanted to be right on top of him. This also gave me a sense of security and confidence in her.
Good luck and remember that having CAH is not the end of the world but can be the beginning of something very special.