Congenital Adrenal Hyperplasia

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re: re: To Kat
Jan. 25th, 2007   9:57am

Hi Kat!

Thanks for all the info- I find it very interesting because I, too, do not really buy into my daughter just being a carrier because of her symptoms already and she is just 5!  We will know more when we see Dr. New in NY and I will definitely keep you posted.  I also had the ranges from LabCorp and thought it strange that nobody seemed concerned with any of the other markers that were high - just looked mainly at 17 OHP numbers???

Our insurance has been great and as long as the CPT and diagnosis codes are in line with that diagnosis, they will pay.  I guess I am hoping they don't give us hassle on our daughter's since they approved our son's no problem!

How old is your daughter?  Is she in puberty age and thus they felt comfortable with BCP or is she younger (just curious how early they start to treat an assumed case of PCOS).  HAve you thought of trying a second opinion from another endo? Where do you live?

Oh, one last thought, if your insurance is giving you issues on genetic testing, have you thought of going to NIH for their study?  They will fly you and her out there and it includes all relevant testing including genetic testing for free.  That might be a good option for you to get better answers.  I spoke with my endo and we are going to see what Dr. New says about participating in the NIH study for us (since we are seeing her - supposed to be world's expert on CAH) and don't want to step on any toes right off the bat!  But, I have already spoke with Carol VanRyzin at NIH and if we are interested in doing the study it would be this summer........

Valerie




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