I don’t think that you are in a easy situation and actaully would lean toward some sort of middle grown where alos this subject is given out a little more and a little more. I was adopted and just always knew.

I was part of medical education for CAH back in the 70/80’s and am pretty much a cracked egg for that but I’m also delighted that waht I went through might of helped someone else. My parents were and are always big on donating to the bigger cause/idea of things with not always money but rather yourself..... what you offer in a selfless manner. My Dad.....who was very much into voluntering at the theater and thought a great deal of academics and the arts on a personally level that wasn’t trying to impress or opress anyone ...actaully donated his body to science when he passed to the next realm.

I actually meet a praticing ped -endo that was an alum of the teaching university that I was turned out of and he proudly told me that he went to school there and then I told him that I was at that place in the 70’s/80’s and then he went "Oh, my gosh."

Having any condition sucks and i thought suicide was a wonderful idea after the surgeon came in .....I think it was age ten or could of been 12 but having him go now slide down and push on my finger was actually something he thought was less traumatic then what was done to another lady at 14 with him using the dialator on her as the surgical residents looked on. "Medicine isn’t always right but it is forever changing" and that is something cool.  They have changed since I was 14 and I had some man ..medical student pulling apart the man made labia with making a V with his fingers but maybe this helped someone else along the way becuase then he was able to compare what the area was supposed to look like vs. someone that wasn’t getting enough cortiosne. Yep....even those just take a peek ..."a peek" will always burn my ears but then again they were able to see what the should look like for someone with CAH at that age and maybe that somehow helped another kid that came in with percosious (sp) puberty becuase then then now doc was able to now what "normal" for CAH could actaully look like. I had an adult endo before the one that i had know that did a sing song that .."you had percoucious puberty..." he assumed but I actaully never had that.  The surgeon that wanted me to sit on his finger actually meet well and truely thought this was a better option to the lady that I know that got the actual dialators. They really didn’t konw back then and it was trial and error ..they weren’t alot born with that degree of virilization and he had no idea about his surgery but they were able to take that info and build on it for the future. A sheet would of helped and being left alone to see if the period flow came out on it’s own might of been better but maybe that would of caused infection and pooling. It would of been even better to be left alone totally but if you fix the adrenal gland then you fix what the adrenal gland did as well. They were proud and thought I was on the same page and I more like had the feeling of a cat being given a bath and shoved into their ideal of gender..shoved into their idea instead of being you.

I think you are in a hard situation and relatives or family friend that brought up the condition always ment well and wanted me to know becuase maybe they thought it would make me comfortable that they had some idea of the condition and that is where your concern is ..people focus on different things and things your child might not be aware of ......I have no idea what anyone should do and i don’t envy the situation but I hope that if Cah could have a more rounded picture of the condition oput there and what we are relaly like then maybe it could someday be thought of on the same level as diabetes. I’m pretty much a boring idiot and really the majority of people here don’t like me and It’s Ok ....The one parent wrote oh I was born was "ewwww gross .......but she had learned so much " and I hope here daughter never knows what her mother feels.

I really have womdered how a parent would tell everything about CAH ...sooo this is an awesome thread. I really am old and came remember watching a rerun episode of Trapper John M.D. where they actaully a really good episode about CAH that did the we thought boy but with test you have a girl and on top of that ..this condition may kill you. They had the Dad with the baseball but Trapper told them..wasn’t a boy .......I wonder what would happen if someones kid with CAH was at a slumber party or something and some show came on and did this small point about CAH and the kid has been sheltered from the condition. I like the part of giving things out in pieces and also agree that it’s good to try and be a kid .....those genital peeks ruined that one but I digress ...maybe the ones that don’t konw could be first told that this does happen in the condition and it’s just part of nature when one little gland doesn’t work ...and then told little more and little more....just an idea as I don’t have children and can’t because of maybe the CAH, ovarian cyst, hashimoto’s thyroiditis, celiac sprue but the gyno cancer two years ago really made sure that it wasn’t in the cards and actually i was gald because they sliced off waht I was born with  and diced me at five to make their man made vaginal canal to get to the uterus they treasured every six months had them viewing what they did and teaching others which I can respect but really would of been nice to be left out of their good intentions but really was no choice becuase fix the adrenal gland and the rest does follow...you can’t fix just one part of a breaking system.

I saw someone on Sally Jesse Raphel  (remember her?) in the afternoon that had CAH and I was just flippin channels and this person was older and wasn’t able to tollerate daily cortiosne and was born extremly virilized and was living in a male gender ...so how does one tell about that same part of CAH. There are so many conditions but this one isn’t that easy at times. 

If you decide to tell her know or later"? I would be positive about it.

I would like this condition to get where you could walk into an ER and the Docs would go " Oh yeah we know what that is" and somehow then the curiosity part would stop.

Sometimes it is a lonely condition and i wish that wasn’t so,

I have no idea about what you should do but so wanted to write in support even though most don’t like me and just pick apart my postings.

Even on the Cornell Urology CAH surgical site it mentions intersex and I want to konw how the heck would you explain that to some kid/teen?

I’ve written to much but it was good to see this post because I bet this is something other parents wonder about but just can’t bring it up.

take care.