My grandson who is 10 yrs old with SWCAH also had a very big penis when he was born. The endo said that was one of the signs of having CAH. 

A gene specialist came in along with a team of Dr.s came in with a ruler and was measuring and all taking turns looking at it. At first we were all in shock with the diag. then I really got mad at them. 

Every visit from then on she has also looked down there but........I refuse to let the team of Dr.’s at every visit do the same. I’m all for new Dr.’s to learn all they can about CAH for our children but there is a limit. 

THe endo did tell me when this was first brought to our attention that he wouldn’t keep growing and it did all match up with his body as he grew. 

I don’t remember anyone taking pictures but then thinking back I’m not sure. Like I said we were still in shock at all this. I’m going to ask at the next visit.

Jenny