Hi Valerie:  I’m preparing your packet and hopefully will get it in the mail before Christmas.  I was on birth control pills off & on since I was 16yrs old until the birth of my 3rd child which was about 10yrs ago.  I believe the pill helped many of my symptoms stay at bay.  But the last 10yrs they have gotten worse.  Depression, acne, hair growth on places where I don’t want hair, extreme fatigue, weight gain.   Some of your families’ symptoms do not sound to go with NCAH, but I’d honestly don’t know.

The docs at NIH thought my kids’ NCAH was mild, so they wanted to try them off meds.  Rachel, 17yrs old, has it the worse in our family and since she has been off her fatigue has gotten worse and her testosterone went way up.  So, that is why she is back on.  She has labs again next week so we will see where she is at that time.  Quinn, my 2nd daughter, 14yrs old, hasn’t started her period and seems to have an extremely mild case.  Hopefully, once she starts her period things won’t go crazy.  Clark, 10yrs old, is growing fine and is starting to get a little pubic fuzz which is OK because he is in the puberty range even though us girls tended to start puberty late.  Quinn & Clark are off meds.  Clark still wears a bracelet because his ACTH stim test only went up to 18points and should be up to 19points to pass.  He would only need stress dosing if he got really sick.  Quinn does not wear a bracelet.   She would only need stress dosing if she were in a serious accident and was in ICU.  Rachel wears one again since she is back on meds and I really need to get on myself since I am on meds.

Your son should definitely have an ACTH stim test, if not already.  This is the BEST way to determine exactly how his adrenals work under stress no matter what the DNA or labs say.

Just keeping asking questions because we are all here to help eachother!!

God Bless and Merry Christmas!