Hi Kate
As I said above, my son was also very small and failed to gain much weight in infancy. He caught up in later years though, so don't worry too much - I am sure your daughter will too! My son also took 150mcgs of fludrocortisone at this age and his hydrocortisone dose remained the same from birth until he was 7 years old! Looking back, I feel this dose was obviously far too high in infancy and probably caused his slow growth but his bone age was very delayed too, so in effect growth was just delayed, not lost. If your daughters bloods are being checked and results remain within the normal ranges for a child her age with CAH, then her dose must be appropriate.
As to checking blood sugars, some children with CAH can become hyperglycaemic - has your daughter experienced episodes of this? If she becomes ill, they may suggest checking her blood sugars, which can be affected if her cortisol level is too low. This certainly does not mean she will develop diabetes! My son occassionally had low blood sugars when he was little and we have a machine at home too but haven't used it for years (he is now 18)!
As for being thick - that is ridiculous! Your questions are very sensible and show you are a loving, caring mum, who wants the best for her daughter. It takes time to learn about a condition such as CAH but don't be afraid to nag her consultant for answers, if you are not convinced or satisfied with anything you have been told!
Sue@cah.org.uk
