My son was almost 2 mos old and hospitalized 2 times before he was diagnosed.  Each time his sodium was low and the potassium was sky high.  I would try to find an endocrinologist who has other patients with CAH.  Always ask that question, we were once referred to an endocrinologist  who specialized in diabetes.  She was very vague when we asked her how many patients with CAH she has treated.  We were sorry we doctored with her.  I drive 70 miles, but this doctor is worth the drive.  I would drive further to see him, just becuase of the difference in my son, since we have been seeing him. 

The Cares Foundation, gave me the name of the endo we are currently seeing.  I know they are struggling since the fire.  But Kelly might be able to give you a name.  She is wonderful.