Well for us personally, I have always noticed that immediately after a dose raise, Ashley’s appetite picks up and he craves proteins--eggs and beans etc--not fun at all really for a few weeks :)-- immediately has a weight gain and then this stops at a certain weight and the height catches up eventually.  That is a sign to me that the dose raise has been a little too much really. (In fact if you look at his growth chart, his growth looks like stair side-on--up sharply and then levels flat, up sharply then levels falt.  I feel in a normal child they would stick to the curve more smoothly.

I think the reason why Ashley did not gain weight when he was on the 10mg at night was more than likely because it was given at night and was for the most part excreted in 12 hours or so.  Then he had 5mg during the day and this determined his appetite during the day.  Because the he had 10mg in the evenings though, this affected his GH secretion through the night and stunted the growth and possibly caused bone loss.  Sooo in effect the reason why we did not get the big weight gain was because at the point where the highest dose was--it could not affect his diet really--it just caused growth problems instead. 

I note that a lot of the children who are having weight gain are having their doses large during the day as well as in the evening.  For example above Lisa’s child not only has the dex at night (which is bound to cause GH and growth issues) but also 20mg of Hydrocortisone during the day itself.  Equivalent as Carol says to near on possibly 60mg Hydrocortisone per day.  I am sure we are all aware that there arn’t even adults with the severest CAH or SWCAH taking that much corticosteroid.  When I read things like this, knowing what happened to Ashley at aged three and up on just 10mg, I find it disturbing really.

I read about kids with Ashley’s severity of CAH doing a great deal better because they are not on anymore than 5mg per day.  he was on three times this amount.  The above is the reason why he did not gain weight in my opinion. :)