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Hi, I have to say your message really surprises me, as all children with CAH (whether salt-losing or non-salt-losing) should be referred to a paediatric endocrinologist, who has experience in treating the condition. I also find it most odd that they have decided to treat your daughter and not your son, as without treatment your son could experience early puberty and have a poor final height prognosis. CAH is quite rare but well understood but should certainly not be managed by a general paediatrician, refering to a text book! I would urge you to request a transfer to a paediatric endocrinologist so that your children receive specialist care, in order to ensure that they develop normally and do not experience problems. You can do this by either asking the paediatrician (who should know that he/she should have done this already) or via your GP. Whereabouts in the UK are you? I can let you know your nearest hospital with the appropriate expertise.
I don't wish to alarm you unduly as CAH when treated appropriately is not a condition that will affect your children greatly and they will continue to lead normal lives. It is however important that they do receive expert care. If you need further help, reassurance or advise, please feel free to contact me direct: sue (@) cah (dot) org (dot) uk
