Heidi, I am so sorry to hear about the problems you have had with your son's treatment. I hope you are comfortable with your son's endocrinologist now. NIH is the National Institutes of Health located in Bethesda, Maryland. It is part of the federal government. They are currently conducting a study on a new treatment regime for children with CAH. Children in the study are treated with the usual CAH medications plus 2 others. Early results from this study show that this treatment may reduce the amount of hydrocortisone required (and therefore reduce side effects from hydrocortisone) and may improve growth. They are still recruiting patients for this study. If you want more info the web site is: http://clinicaltrials.gov/ct/gui/c/a1r/action/GetStudy/screen/ResultScreen?order=1&xml_file_id=xmlfiles%2FCC__96-CH-0033.xml%40csdb&JServSessionIdcs_current=bg8ju3ccpq Sorry it's so long--I didn't make it up! If that doesn't work go to http://clinicaltrials.gov/ and type CAH in the box for condition and it will take you to the right place. Several people on this board are participating in the study. Hopefully they will respond to your post too. Also, there is another study that people on this board are participating in using growth hormone to improve growth in kids with CAH. I don't know much about it all but I think it is Dr. Maria New at Cornell in New York City who is conducting the study? That is something your son may benefit from also. Your experience really shows how important it is for us to understand our children's medical condition (as best we can anyway!) and medications, and how important it is to ask our doctors lots of questions and challenge them if we don't think are children are receiving the best possible care. You sound like a great mother who is doing the best she can under very difficult circumstances. CAH is very complicated and confusing. I feel so lucky that I found this board when my son was born. Without it I wouldn't know anything! Good luck to you and your son!! (sorry this is so long!)