Thank you for your input.  Unfortunately, the Dr. wants to keep her on the pills since thats what she has been on.  We are still trying to figure out what is going on with her since her past results have been 17OHP 10 ng/dl/hr then 4 weeks later 25 ng/dl/hr and most recently (the first time we checked it with no meds given in the morning at 7:30 as the Board suggested, thanks for that too!) 11 ng/dl/hr.  Her Renin levels have gone from .17 ml/hr to .21 ml/hr to .48 ml per hour.  We keep reducing the cortef meds but from what I have read on this board those are well within the normal ranges.  The OHP being a tad low, I believe, if the abstracts y’all have presented here say from 200 or 500 to 1,000!   Maybe I have read it all wrong but anyway, the doctor says she is taking low amounts but not out of the normal range for babies this age.  I think the florinef she takes (still at .1mg 2x per day) could be keeping the cortef minimal.  The genes are still out being sequenced (since none of us had the top 10 mutations) and we still don’t know if she has 11 beta yet.  I will say, however, every time we lower the meds she sleeps SO much better.  Still not much of a napper but she has so much trouble tuning out the world:)  

Thanks for sharing all your experiences.  I learn so much here!

Rebecca