Hi Tonya,

Yes, my son has SVCAH. He was first diagnosed as a SW but after much investigation on my part and DNA I was able to re diagnose him as a SV. He has never had a crisis or even been close to one. He has been sick with a high fever once or twice but I never had to more than double, (mostly out of precaution). He never looked like he needed it (physically).

He also went through what I thought was a traumatic experience with a 2nd and 3rd degree burn on his arm and a little on the side of his chest (long story) and he did great. I had given him a 1.25mg cortef (I wasn’t sure how much to give him for this stress) before going to the hospital  and he never again had a stress dose.

He is currently on .5mg of cortef. The increased it from 3.75 from our last visit because of his high 17ohp. I don’t know if you read my posts below but what really bothered me about this is that his 17ohp was so high but his Andros., Testos, and PRA were perfect. My endo here told me to increase the cortef. The endo in NY, told me to disregard that number because it was  probably incorrect. I was concerned because the 17ohp and PRA are the only two things that my doctor here checks. I just happened to request that she do the other two in addition. How could she justify raising or lowering my son’s medication on a number that is not completely accurate? Without the other tests, she would have thought of it as accurate. Things like this concern me a great deal.

How was your husband diagnosed?

Thanks for you responses!

Sandra