Hi Jacki,

We are in a similar situation as you...my son was diagnosed at age 6 1/2 with a ~12.5 yo bone age.  He is now 9, almost 10.  Happily, his bone age has progressed very little since start of treatment....it has been in the ~13 range, for a while now.

I think that you may want to keep an eye out for the start of central puberty, in your son.  Many CAH kids will have signs of androgen excess from time to time---resulting in symptoms such as acne, body odor, pubic hair, etc.---but it doesn’t necessarily mean they are actually undergoing puberty.  Real puberty only starts when the pituitary gland becomes active, stimulating the ovaries and testicles to also become active. 

Some CAH kids are more likely to undergo early puberty than others.  The ones who are at greater risk are those who have a very advanced bone age, and those who are diagnosed in later childhood.    With a bone age of ~13, and being late-diagnosed, your son is kinda a prime candidate.  This may be what is causing the body changes that you see...even the 1:1 bone age to chronological age advancement. 

Has your doctor mentioned this possibility at all?  If not, then I think you really may want to get a second opinion soon. 

Many kids who are actually undergoing early puberty are also treated with a drug called Lupron.  This will stop puberty from progressing, delay bone age advancement, and help to preserve height potential.

Any rate, this probaby just skims the surface of this topic....please let me know if anything seems confusing or unclear.  Like Christine, I also know exactly what you are going through.  Keep us posted!