I totally understand what you are going through.  It is very hard to understand everything about CAH and then putting your child on a daily medication is awful.  I do think that my son on dexamethasone doesn’t seem to have the weight gain, etc.  Maybe you could talk to your doctor about putting him on dex instead of Cortef.  I always think a second opinion is great, so you might want to go to a different endo. to see what is going on.  Good luck and keep us posted.