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LOL, I forgot that you have the derm giving her script right? Cause what I was thinking is that all NIH can do is make suggestions, they can't make your doctor change the treatment regimen. But if you were needing an endo to continue treatment...well....that's different.
Do they want her to discontinue her pred to do another stim test? In case something went wrong with the first one.
Not only am I without the symptoms of locah, but especially now that I am on Cortef I am a much calmer person than I think I would have been without treatment. The same may hold true to my daughter, actually I wonder how she would have developed without Cortef. I really can't speak for her because I don't know how she would be at this age without Cortef. I myself don't have acne, or a hairy body, and I don't have trouble with fatigue....I don't know. I wish I could give you a better argument.
I do hope they can get to the bottom of your daughter's issue. I feel that some where down the line I may be in the same boat as you with my son. He carries a deletion. Trying to get treatment for him and no one wants to help cause technically he's a carrier!
Sorry I can't be of more help though. Take care, and have a great trip when you go. Carol VanRyzin is great, you'll like her.
