We live in Canada and she is under the care of the Head Pediatric Gynocologist in the province. I have done my research on the WEB and I agree that talking to some one other than mom or dad, which she isn't comfortable talking to dad about the situation anyways, wouldn't hurt. Thanks for the support.
I wish I could offer some words of wisdom, but I can't. I know nothing about this syndrome, and any information that I could offer I would get off the internet, and I am certain you have done your research. Are you in the United States? Have you reached out to some of the bigger hospitals like John Hopkins in Baltimore? You can often send copies of reports, etc via email.
Is your daughter seeing a therapist? I think that it is important for her to have someone that she can talk to, someone objective and removed from the situation. Wouldn't hurt mom and day either.
Hugs to you all.
Pam