Hi April:

I know all too well what you mean although under different circumstances.  My son was not diagnosed with SWCAH until he was 3 years old.  I think he would have remained undiagnosed for even longer, had it not been for the fact that he had started to grow pubic hair.  He was bigger down there but I assumed that it was normal.  In fact, I had actually asked my husband if my stepson was smaller because I had seen him in the shower and noticed a difference - and of course MY son was perfect, right?  ;)

His Endo regularly checks now to make sure his testes aren’t getting bigger, as that is the one of the first signs of puberty.  For the last 4 years, his test results have been great and he has not grown any larger down there.  We are on "puberty watch" all the time to make sure he doesn’t enter puberty too early (before he is mentally ready).  I notice that he pulls his penis alot and is constantly making adjustments.  I think that, unfortunately, it has become somewhat of a bad habit at this point.  He doesn’t even realize that he is doing it anymore.  I asked him about it the other day ("Is it uncomfortable" "Are you itchy") and he told me that it felt good (somewhat concerning to me but that is another story...)

Anyhow, hopes this helps.

Kristin

P.S.  BTW - thanks Eric for your note on where you are at today.  I have to admit as the mother of a SWCAH boy - I am always worried that he won’t live a "full" life and be able to have children so it is comforting to hear your story.