Macarena,

If the child really doesn’t have CAH than I would doubt that taking him off treatment at once could lead to an adrenal crisis.  I mean, if a person who was treated with HC, for lets say asthma stops treatment suddenly, than is he expected to have an adrenal crisis because of that?

 My son was also diagnosed with, and treated for SW CAH from birth to about six month.  Through DNA it was realized that he only has one classical (and a real sever one for that) mutation and the other NC gene.  Dr New ordered us to stop all treatment at once (if it was Cornell who had the last word in your situation, I would assume they did it the same way.) and he has done fine throughout...and that’s even though he was running a fever twice, including one that took almost two weeks to get rid of and he is currently on antibiotics for an ear infection.  Even more, according to testing that was done shortly after treatment was stopped it does sound like the CAH is more sever than what was originally expected and after the ACTH stim test I predict they will probably put him back on treatment again.

If your son reacted with an adrenal crisis to the change there is probably something really serious involved and he does have CAH or another major condition.  I’m sorry to hear that things didn’t work out for you.  As others on this board mentioned it would be wise on your part to seek further advice but I would still hold on to Dr New for some time.  Maybe she is doing all she can for you and is researching your case as much as she can.  She is only a person and if things didn’t turn out as she predicted them to in the first place, that doesn’t mean she is letting it run its course.  She will have to come up with some solution sooner or later, or at least admit that she doesn’t know what is happening, even only to save her skin.

Please keep us informed with how things develop.  My heart goes out for you and your child.

Best wishes

Risty