Your story moved me so.  I am so sorry for your loss.  What pain you must be feeling.  Perhaps others may respond who have experienced negative side effects with Cortef.  My daughter is only 4 with saltwasting CAH.  My older daughter was tested for LOCAH but the test was negative.  I know that when my 4 year old was oversuppressed, she was very cranky, whiney and clingy.  She didn't sleep well and was more aggressive.  I can only imagine if this occurred when she's older and it went unchecked, how it might affect her behavior.  I hope you find some answers.  My prayers are with you.