Chris, In answer to your question about whether it matters if the blood is drawn before or after the am dex:

In my opinion, you can certainly do it either way. However, I think you would have to use much different parameters to decide what constitutes good or bad control. In other words, a 17-ohp level of 350 ng/dl BEFORE medication is certainly NOT the same thing as 350 ng/dl AFTER medication. Neither is 350 ng/dl gotten in the morning the same thing as 350 ng/dl gotten in the afternoon. What’s more, 350 ng/dl gotten in the afternoon, two hours after a dose of HC may not even be the same thing as 350 ng/dl gotten in the afternoon eight hours after a dose of dex. The trick then is to decide what constitutes under or oversuppression, in each given situation. That is the part that gets really tricky and why I think doctors seeem to be all over the map with this issue....in my opinion, there really is no one-size-fits-all answer.

As for others’ questions/worries about dex use in children:

Of course, I am perfectly aware of dex’s bad rep...I have been from day one. Our doctor was very forthright in telling us that this was NOT the drug that most other doctors used and why. But, CONVENIENCE was certainly not the reason why we elected to go with the dex...it was because he made a reasoned, logical argument for preferring the dex over hydrocortisone.

As for how my son has done on the dex: He was diagnosed at the age of 6 1/2 with a ~12.75 yo bone age. Based on his height at the time of diagnosis and his advanced bone age, his adult height prediction was ~5’-2"....5’-4" if we were lucky.

Today, Nick is 11 1/2. We just saw his endo a week ago....he is now just a fraction under 5’-5"....already taller than the most optimistic estimate 5 years ago. His current bone age is 13.5, meaning his height prediction has increased significantly since diagnosis. Yes, while being treated with dexamethasone. To be fair, we have also used hydrocortisone at different times in the last five years, but the breakdown if probably along the lines of 4 years dex/ 1 year hydro.