Another argument for NOT following the normal reference ranges for children without CAH after pondering on such was that cortisol is one of the main hormones that shoots up in stress.  Children at various ages that has therefore not had blood tests before would be pretty stressed by that really and also various other factors could affect their cortisol levels.  Which in turn suppresses 17 OHP levels.  So even the "normal" ranges are to me going to be somewhat lower  than they would be had the child not been stuck with a needle or had a blood draw.  How therefore do you define what is normal anyway--even in normal healthy kids??? 

I think that the best a Doctor can do is to reflect on those things and to really listen to what the other clinical assessments are telling them.  They need to be more in tune with those and just use the blood ranges as a gauge as to what is happening after they have noted a slow down in growth.  Obviously if the ranges are above 100ng/dl, they then need to step up the blood draws monthly to keep an eye on things to make sure it isn’t getting out of hand.  

I DO think timing is important and that they should be always done just before a dose is due and not after dose is given though because of the reasons outlined in the above post.  Right now I feel the blood spot tests before each dose is about the best way to determine if every dose is doing what it should or over or undertreating.