Yes - I agree get testing.  We had genetic testing done by Dr. Maria New at Cornell University in New York City. It was just a blood test taken locally and then the sample sent to Cornell - with the results back the local doctors.   Also Dr. Maria New is an expert with non-classical CAH.   I would go to Dr. Maria New at least once a year - then a local doctor for follow-up. 

CARES can help you. Please go to the CARES web site (also Kelly has information about free travel assistance for medical treatment).  Most doctors won’t know what tests to run or how to evaluate them. You need a good doctor for CAH.

web site: www.caresfoundation.org

1-866-CARES37 is the phone number or 1-866-227-3737

kelly@caresfoundation.org - email