I don't know if I'm in the right spot - CAH?

OhSewCrafty

This all started with the PA at Ginny's 3 month appointment asking if her "clitoris has always been that enlarged." We were referred to a pediatric endocronologist who ran several tests after confirming that she also had some labial adhesion. That was a few weeks ago, but today the doctor called to say that all of the tests were back and that her 17 hydroxyprogesterone levels were very high, indicating adrenal hyperplasia. We need to go back in for more blood work and an adrenal stim test. I'm trying to stay away from the Google monster, but I'm also kind of freaking out regardless. I asked him what else could cause that test result and he had no real answer. Does anyone have experience with this? I can't find much aside from medical jargon online and would love to just talk with a real parent. If I'm in the wrong spot, I apologize!

OhSewCrafty

Thank you very much, @-auntie- .

KYmama9286

My son does not have CAH but has a condition called Russell Silver Syndrome which really isnt related much besides it being an endocrine type issue also. I just wanted to comment that one organization we are really involved with and have found a ton of support from is called The MAGIC Foundation (Major Aspects of Growth In Children). MAGIC is a parent made/parent run organization that offers education, support and resources for families of kids with a variety of medical disorders. RSS is one of them and so is CAH! Here is a link to their CAH specific page. They offer a 1x/year educational convention (usually in mid July in Lombard, IL near Chicago) that is fantastic! They get a bunch of speakers on each individual medical condition and present info about treatment plans, what to expect, social and family issues, newest research, etc. Just wanted to share a great resource as you begin the diagnostic process! Good luck!

https://www.magicfoundation.org/www/docs/100