Thanks again, Carol.  I also think it’s better to find an open minded doctor, willing to check everything. I was pushing my ped last week (with whom I have a great relationship with, but is not a specialist), to see if there is ANY other reason for the acth to be so high, just trying to explore all possibilities. He said a tumor could do it, but then the clinical would be different. I’m really struggling to find out what to do next... I know there are many possible answers to Chresten condition, but I seem to be unable to get them.

I’ll let you know. Take care.