Hi Michelle,

My girls’ 17-OHPs have gone under 100 ng/dl a couple of times.  Values this low were always associated with periods of very poor growth.  Less than 100 ng/dl is the normal range, which we should not be shooting for.

I put a stop to exams of a very personal nature for my girls.  They are much happier to go to the doc now.  Perhaps you can tell the new endo how difficult this is for her, and you can work something out.

I believe your endo means that 22.5mg of Cortef (total dose) when divided by Taty’s body surface area (1.55 sq meters) translates to 14.5 mg/m2.  This is the way that Cortef is dosed to account for different sized people.  I remember reading that most nonclassical children use 5-15 mg/m2.  My younger daughter’s dose is down to about 4.3mg/m2 since we’ve adjusted dosing to match the circadian rhythm.  It was as high as 18mg/m2 on the old dosing schedule.  She’s now growing great and carries no extra weight.

Good luck with the new endo.  Sounds like it’s definitely time for a change.

LauraK