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Newy, I hope you had some luck with the uk support group? I have found them to be very supportive.
I have a 6month old baby girl with SWCAH. aia think it is awful that some people with children with the same needs get the highest component of DLA and some, like yourself, get no help. I don't see how they can argue that babies with CAH require no more care than other babies, you are keeping your daughter healthy by giving medicine etc. Stress that you have to provide the injection in emergencies and that the condition can be life threatening if not treated properly by yourself then appeal if you have to. Just have a read through some of the posts on the UK support groupsmessage board too. I agree, childcare must be very hard to come by and I think it is ahuge responsibility for anyone to babysit as, when you run through the list of medicine plus what to do in an emergency it must sound really scary to people who aren't used to it all!
