Nicole, we are in the process of enrolling our son in the NIH study. He is currently on Cortef. He was on Florinef but his renin dropped to below 20 (unreradable, it was so low) so the ped. endo d/c'd it. I disagreed with her decision. I thought she should have lowered his dose instead of d/cing it. Anyway, from what I understand, the 'conventional' treatment in the study is still a great improvement from what we are on right now. I am so excited about how closely they will follow him and all the 'extra' tests that will be run on him. All his now is his progesterone, testosterone,renin bloodwork (once a month) and he's had one bone age scan done. NIH appears to be so much more indepth. Thanks for your response. Selena