Well Liz, it looks as if we have both misunderstood each other.  Your post title got to me, but I can assure you I can absolutely relate to all you say and yes I have not walked in your shoes, but I can empathise with everything you say.  I have carried my son’s shoes...... Dex is really awful if you are not on the right dose and this is what happened to my son, in fact he was given an over dose which caused so many problems, gave him terrible acne, he has the stretch marks, he could also be infertile, he has low bone density and the list goes on. No I am not comparing as you both have been through a tremendous amount, but really what my point is, now I understand you were not really trying to compare but the way the title was written seemed that way. I feel that CAH is NOT always taken seriously enough by the medical profession because it is merely replacing what is missing.  My son is now thin, but he still sees himself as fat.  I was only pointing out that not everyone has an easy time with CAH and really do not feel blessed in my son having it. It is good that you can be so positive about things but I guess I am still hurting because my son has had such a tough time of it. One doctor took an interest in him and saved his life, he would not be here today if not for him and I would not wish that on anyone.  I chose to tell his story to help others as he had to resort to using a diabetic pump to infuse his hydrocortisone, without it, he will not survive, so he does not even have the choice of taking tablets.  Luckily it has changed his life for the better and he is a new person, can go to the gym even but he still has the emotional problems that were caused from being overweight and the problems CAH caused him. You telling parents this and sharing your feelings of what it really felt like is important as we can only learn from each other. It is about time that treatment got better for all, I think it has improved a lot. My son was badly treated because he ’only’ had CAH........ children have died because the mothers neurotic. So I apologise if you thought I was judging you, not at all. I have learnt so much and found a lot of comfort in reading parents ’bitching’ because then I don’t feel so alone. I wish you and your little girl all the best.