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Are you also from Australia, if so whereabouts? Our oldest daughter was diagnosed at birth, she is now 3 years and 4 months. We have had minimal problems with her condition, a few bouts of vomiting which has required her to spend the night in hospital and one reasonably serious crisis which also required hospitalisation. The day to day management of the condition is relatively easy now that she is a bit older and can just swallow the tablets. Previously we dissolved them in water and syringed them into her mouth. She is a little on the short side, about 30th percentile, and 50th percentile for weight. She is an amazing little girl, very bright for her age. She copes very well with all medical things (blood tests etc), she is used to doctors and hospitals, and actually loves going to hospital (even when she's sick).
We live in Queensland on the Gold Coast and Grace is well managed by a pediatrician on the Gold Coast and an Endocronologist in Brisbane. The Royal Children's Hospital in Melbourne have excellent staff with an interest in CAH. The Australian CAH Support Group also have very good information and an excellent publication available to help you, your family and friends understand the condition.
Having spent a few days in the Royal Children's Hospital we really do feel lucky that Grace "only" has CAH, there are far worse conditions, and once you get into a routine of giving the medication and getting used to the condition, it does become a lot easier. CAH children can lead a relatively normal life, they just have to be monitored a little more closely and receive extra attention when they are not well.
