i, too, am so sorry to hear of your struggles. this type of pain at ANY age can be debilitating, but i'm sure it's terribly scary for your young daughter.
like some of the others have said, heat has worked well for me. i have been getting nerve block shots that have been a TREMENDOUS help in relieving nearly all of the pain for awhile. i have also been prescribed some heavy duty pain meds (methadone being one of them) to control it.
is your daughter in physical therapy? does she take any meds for the pain?
i will keep her in my prayers...
shalom,
angie