I find it amazing how treatment varies in the UK.   As Mary states above, there are quite a few ’old school’ specialists who believe a blanket dose of say 20-25mg/m2/day is what is required for all CAH children and their doses are worked out religiously according to this formula, without taking into account the individuals needs.  A dose this high, will be sufficient to cover colds, excitement etc but in the long term is probably too high and could lead to undesirable side-effects.  I personally would prefer my child to be on the dose he needs (at present only 12mg/m2/day - proved to be sufficient by regular home 17OHP profiles and 6 monthly blood tests) and will increase the hydrocortisone a little, as and when required (which isn’t very often).

Janet - does your daughter have 24 hour 17OHP profiles on a regular basis - either at home or as a hospital admittance?  Are you aware of your daughters levels?  Does she have an annual bone-age x-ray and are you told the results?  I only ask, as some endocrinologists also keep results from parents and just tell them everything is fine, which I find insulting!