I like the idea of around age 13 but the experts in the field  go with much earlier and Planning ahead will go with whatever she is comfortable with and I just shared how I felt with own feeling and any time we do it’s bash the people with CAH that don’t follow the experts and that is ok.

All the talking in the world doesn’t make a difference and adults telling the child Ok to say no when they really want this done to the kid? yeah like I would ever say no to my Mom or the Doctor because being a Good Girl was following what the adults wanted.

 

 All I did was present a different treatment opption for this day and age. The parents can report the hair and save the kid some dignity and let them still be a kid. Elaine’s  post was perfect and came from the heart and mine too about feelings not looking this way or that for whom. Yes, Cornell recommends dilations in this day and age but those with CAH want to sweep it as extreme cases which is fine if you aren’t the extereme case like me.  My surgeon felt from the bottom of his heart that being finger dialated by him was less tramatic to a ten year old, I would disagree but he meant well and I would of been better if all this was done 13 or older plus giving me a dialator to take home would of been better. I had a great Endo who with out a doubt believed the way he and the students did the gential exams were the less traumatic- I would disagree see Elaine’s post.

I wanted to let the first poster in on that all the medling in the area is a give away that something was done and if the surgeries are so good these days then maybe this kid was left alone and I really think from having the condition that around 13 is a good age to bring it up because for me all the talking about it prior to that only suceeded in causing anxiety. I had a SINCERE endo that thought the way he did the exams lessened the trauma and no matter doctor or not the focus in that area for a child does something. I talked with the ped Endo recently and he really listened to me and so did the surgeon who did their best based on the knowledge of the time . Each case is different as each child. Mom is awesome and picked me with this condition (I’m adopted ) brought me to the best educated doctors for the time period but info about this?   at anything under 13 please I didn’t want any of it because this is not info that in any way my cognitive development wanted to absorb and it’s enough for a child without this condition to absorb what they have to absorb and I thought about this we are all girl blah blah so seems right to bring up the surgery around the time of the period and earlier makes one a little too educated compared to the other girls you want us to be normal with and thus couldn’t relate to them.  This is my opinion and only speaking for myself : )

I do imagine that 50% of those with CAH and of course parents  will not agree with me and that’s cool to but something how if one doesn’t follow the experts then we get a "talking to instead of just letting it stand on its own.  

I had great blood work but the condition took off on its own for awhile in the early teen years no never had percoucious puberty but still had puberty then on top of that what CAH does puberty is out of wack in general all the perfect blood work didn’t make a difference and all they could do was chart me like a growing bush after puberty things calmed down. All you a trip because you think the surgery and the cortisones are a match for being born with CAH/ excessive androgens maybe DEX  or people less virilized . I was/am a bashful person by nature and all they did was magnify that. As a child the subjest matter in anyform whas to mature for me and made me feel even more rotten. But 13 had a little more handle on things.   

Anyway hope my two posts help or at least give you food for thought.

It’s like ....surgery to help with period flow Ok that is logical to me and something done to help me. Oh yes, focus on the adrenal gland  : )  Plus tell her about the adrenal gland in relation to the other endocrine glands like the thyroid ....know that is an evil gland and tell her to demand that her Endo check it at 20, 25, 30 .....none of this waiting until 35 ; )  get it if you bring up the surgery along with all the other things in life - periods, wacky thyroid gland, Std’s - don’t sleep with anyone without marriage or at the least a condom Plus paper work from the local clinic. No kissing either Herpes I... can kill you try not to let anyone kiss her becasue 80% of the public has this virus  . Oh yes doing well in school and what career. See if you put the surgery in with the rest of life and that boyfriend will love you for you and your CAH -not in spite of it  whewww and don’t drive fast  ...speed kills  seee if you bring up surgery with everything else in life then maybe less anxiety when she goes out to use the darn thing.          

All the best