Aimee,

I first would like to apologize that I have given your the impression I don’t like you. That is absolutely not the case. The information you have provided to the people of this site, especially parents who don’t have CAH themselves, is priceless.  I haven’t always agreed with your answers to others’ posts, but really should have just minded my own business because you have always been a helpful allie to me.

I always hate to hear about the horrible experiences you have encountered when dealing with the medical community or public in regards to your CAH. It is amazing that one person can endure so much. As much as some of your stories make me cringe, they have truly helped to educate me, and make some important decisions. For instance, my daughter hasn’t undergone the physical exams you speak of following her surgery. Her urologist checked her initially following surgery, and upon our check a year later I asked him if it was necessary. I asked this question based on information I gathered from your stories. He said it actually wasn’t, because even if the vaginal canal had contracted, we wouldn’t address it until she reached puberty. He explained he was against dilation, or attempting to keep the vagina open, so we had nothing else to talk about for several years. We haven’t been back since. Her ped. endo also does not do vaginal exams, nor has she ever requested to. It makes me a bit curious about Dr.s who still do. Although I feel this is in her best interest, a part of me feels as though she would have a better understanding of what was to come if she did have more follow-up with the urologist. (Or as you put it, be able to connect the dots.) I now feel like I am just throwing something into the mix that has never been an issue for her before. That is hard to do.

Aimee, I was really hoping you would respond. I appreciate your feedback. People used to tell me you can’t imagine being a parent until you are one. I never knew what that meant until I became one.  I think about you the same way. You can’t imagine having CAH until you do. I would never presume to understand what you understand.

Michele,

Thank you as well for your response. It is refreshing to hear I am not alone. Like you, I read this board every day, but rarely post. I feel the older my daughter becomes, and the more she understands, the less support I need from "the outside." I just try to help others if/when I can. I think you are right about not delving into the emotional roller coaster parents go through when getting the diagnosis. I think that would create doubt for a child. "Why would my parents be so upset." Type of thing or, "What is wrong with me?" questioning. Like Aimee pointed out, though, I would like to hear more about the timing you used with your daughter. How long has she known about the prader scale? Did she have a lot of questions for you? Again, thank you so much for taking the time to respond. It means a great deal!

If anyone else has any advice, I am OPEN! Thanks!

Katrina