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re: my grandson has just been diagnosed with ACH Jul. 2nd, 2007 8:34am
We are living on the Gold Coast and have an 8 year old CAH daughter. She lives a very "normal" life, is top of the class at school, and doesn't get "sick" any more often than her non-CAH sisters. We do have to be very watchful and careful if she is showing signs of being unwell or if one of her sisters gets sick, but other than that it's just a matter of giving medication on time (or near to) each day. When she does get sick we give extra medication and if necessary she is hospitalised usually just overnight. We would have 2 or 3 hospital visits each year when she was a baby but she recently spent a day in hospital with a vomitting bug and it had been 3 years since her last visit - a record! It gets easier as they get older to read whether or not they are getting sick or are lethargic, the child can also let you know how they are feeling. CAH children can really be "normal", they look normal, they behave normal, you just have to keep an extra eye on them when they get sick.
Best of luck.
Jenni.
P.S. Get in touch with the Australian CAH Support Group, they have some wonderful information and a great booklet.
