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Really, I agree with Megan's comments from before, so I didn't post earlier because I don't have much new to add. Your daughter's diagnosis is very clear, and I would be very concerned about her inadequate cortisol response. That is unusual for Late Onset, and in my opinion, she absolutely needs to be on steroids right away, if she isn't already. As far as the dose, I'm not sure how it is calculated in children, but I know it goes by weight. Someone on the Main Board may know how it is calculated or someone at Cares. I know it's a scary thought to put your child on steroids for the rest of her life and risk an adrenal crisis, but in your daughter's case, her adrenals aren't working well and she could have a crisis without steroid replacement.
