Kay, I'm sorry to hear that your daughter is not feeling well.  The first thing that occurs to me---from what you've said in the past about her large number of bone breaks, weight issues, etc.---is that this might have something to do with gastro problems from chronically too-high doses of steroids.  My son also used to complain of headaches when his dose was too high.  Perhaps this would be worth checking out?  Good luck...I hope she feels better soon!