Could the cause be viral?
Has she been in contact with anything new lately....any chemicals, drugs, vaccines....etc....?
Dear girl ...I hope you find some dont give up researching, asking especially other families, have you a support group?
Yes there have been reviews done by Boston Children's and Seattle Children's but no conclusions yet, just that it's not any of the possible diseases they originally thought it could be. Yesterday she had a seizure, which the Dr.s said was unfortunately a common side effect from the Prednisone. At this point there are still no answers :(
I am so sorry I have been doing some research online and as you say its difficult to find any answers, have you seen other Doctors , specialists what about the big hospitals ?