Hi Risty,

Dr New doesn’t think he had an adrenal crises, and I agree with her (my ped doesn’t). I was very surprised when we got the results for sodium and potasium: they were not that bad (129 and 4.5, respectively) compared to how bad Chresten was. But the big question remains... What did he have? At the ICU they said he was in a pre-shock state. I gave him the shot because I could see how weak he was becoming by moments, with blue lips, nausea, totally down... The results of the hormones test that came some days after showed the ACTH up in the sky and a normal 17 OHP. So, he doesn’t have a 21 defficiency, but then what is it??

I am unhappy with the communication with Cornell, but I still trust them. I trust that their experience will end up with some answers. But then again, we need to move forward quickly. It has been 14 months dealing with different options, hyperplasia, hypoplasia, PHA, nothing at all... I’m willing to do anything to come to a conclusion.

Thanks very much for your support.

Macarena