Hi Val,

It sounds like, overall, Ashley's appointment went well....I'm sure you must be relieved that it's over!  Good thing there was no talk about an adrenalectomy....I completely understand and agree with your feelings on that issue.  There's nothing like feeling pressured into having your child be a lab rat for an irreversible procedure, where there is little to no information about long-term outcome. 

So, what exactly is Ash's new dosing regimen again?  I know you were toying with different ideas, and don't quite remember where you ended up.  I'd be interested to hear Dr. Hofman's specific comments about the dosing/circadian rhythm/GH secretion issue.

Have some other thoughts about his wanting to test only for 17-OHP (and renin every 6 months), but will write more about that later.  Just that there seems to be quite a bit in the medical literature which supports the idea that, because of wide variability during the course of the day, a single OHP reading is not very accurate.  If you're testing blood, I have read in a number of places that "androstenedione," which is an indicator of what happens in th androgen pathway, is a much better marker for control.  (I'll collect the abstracts, when I get the chance, and post them.)  I'm also thinking that, with your new dosing regimen,  some rethinking about WHEN to run the blood tests, might be in order.  But, again, more on that later.

For now, I bet you're feeling like a little bit of your load has been lifted!