Bonnie - I don’t think you are over reacting at all.  My son is 6 and his bone age is 11 1/2.  We just found out he had CAH in Nov.  They first called it NCAH but revised it to SVCAH because of the degree of his advanced bone age.  Dr. New said they do not see that advanced bone age in NCAH cases.

Anyhow, they are monitoring his bone age VERY closely.  I was told if we had done nothing his final height would have been about 5’2".  His predicted height based mom and dad would be 5’10 1/2".  So, he has already "lost" that potential and they are going to be trying to "make up" some of that ground along the way via treatment.  By treatment I mean careful monitoring of his levels on meds as well as bone age.  In addition, we are going to be pursuing GH - within the next 6-12 months.  It is cheaper if you need to do GH to do it when they are younger because the meds are so expensive and are based on body weight......just something to think about versus "wait and see".

They height they lose by bone age advancing is lost.  You cannot make up that space - just try to keep it from progressing at that same advanced pace.  You end up trying to inhibit bone age but allow bone growth - make sense? You DO NOT want the plates to close too soon.  Once closed, that is it.

So, my advice to you -----STAY ON TOP OF THIS.  Get his bone age checked every six months.  If it keeps advancing he is undersupressed.

Good luck!