Hi Heidi, this is Katie. I mentioned in my letter, yesterday of a hospital I take my two boys with cah. The hospital is the Natonal Institute of Health in Bethesda, Maryland. You can ask to speak to the ninth floor pediatric unit. Tell them you have a son with CAH and you feel he is not being controlled properly. They have done wonders with my 9 year old son. Please e-mail me with any questions.I want your son to have every option. Life is tough enough! Hang in there, things will get better! Another consideration might be to contact the Magic foundation and ask them if they can help you contact a Dr. Songya Pang, at the university of ILLinois. The CAH director for Magic is named Kathy. I believe the screen address is www.magicfoundation.org.. In this summer's newsletter there were a few people who wrote in that had children in the NIH protocol. I hope you find this helpful!!!