My son is 14 months old and has been diagnosed with CAH since he was about 2 weeks old.  The endo at Akron Children’s Hospital always thought he was non-classical because he had no symptoms at all.  His lab tests always came back high though.  When he was 1 year we took him for genetic testing.  The results came back showing that he was a salt-waster.  One thing that confused me was the genetic counselor said he is a salt-waster, but his mutations were different than most with SWCAH.  This is very confusing to me, because I am left wondering if maybe he isn’t a salt-waster.  Has this ever happened to anyone else?  My son is very healthy and has never had a problem (knock on wood!).

Also, I really want to get a second opinion.  We aren’t too far from Cleveland and they have some really great hospitals.  Can someone tell me how to go about getting  a second opinion?  Do we need a referral and what do we do about our insurance - do they need to give an ok?  Is anyone familiar with Rainbow Babies (Cleveland) or the Cleveland Clininc - can you tell me anything about their endos?

Thanks in advance for your help.

Jennifer