re: anybody have a child like this?

[Guest guest]

hi,

I was wondering if anyone had a child like mine? She is 15. She has

bouts where her hair falls out, lesions in her scalp, occasinal swollen

lymph nodes, Raynaud's syndrome, Livedo Reticualris, one blood test

indiacated a 1:640 lupus titre, follw up showed 1:80. postive for

Epstien Barr, Postural Orthostatic Tachycardia Syndrome, and has had

blood work come back indicating Positive Anticardiolipin Proteins,

however the doctor said she couldn't confirm it, (this after 11 positve

tests), 4 of the test indicating blood clots, The doctor says

something is evolving she just isn't sure what. (so comforting) Now

she has SMA or Wilkie Syndrome, (Superior Mesenteric Artery Syndrome),

This is considered a wasting disease. She has been told to drink 4-5

boost drinks a day, this does help the nausea. They will retest after

she gains 5 pounds and maintains it. Beside that she is an Aspergers

girl with some sensory issues and has reflux disease. WE dont know

what to do now or where to go any advice.?