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I am a mother with a son that has CAH my son is five and a half and it was a real handful to try and cope with the fact that there was something wrong with my son especially since we live in a small town and the doctor thought he had reflux.
I have also been through the how do we explain this and the best thing I have found is to get a hold of the book "Your Child With Congenital Adrenal Hyperplasia" by G.L. Warne it explains things in simple terms and when people ask me I let them read it.
I hear that this condition is different for girls and I don't think I know enough about to give you advice on what to look for but when my son was younger I was told to watch his temperature and to make sure that I always had the phone number for The New Children's Hospital in Sydney so that if I was concerned all I had to do was ring the hospital and ask for the endocrinologist on call.
