NBR: help a friend of mine

Nikki1219 · November 2011

My best friend's younger sister has been very ill and doctors are struggling with a diagnosis. This is a letter that her grandmother sent out stating her symptoms. If you know anyone who could help in anyway, let us know. We are praying for you Emma!

Somewhere in the world, someone has seen this before. We need to find that someone and we need to do it quickly.
Dear family, I sent this to Vicki, she was pursing help from her contacts, thought I would send it on to you all in case you have contacts that might be of help: The first symptom for Emma was last of March, 1st of April while she was running track. She had a rash develop on one hand then the next day in the exact same place on the opposite hand. It worked up her arm and then her face which took the pigment from her skin. Then she started seeing double and had a hard time reading at the end of school which progressed through the summer. Next there were spots all over ( she called them auras). She has a ringing in her ears. She then would be walking along and she would fall down for no apparent reason. In June she did a dive into a pool and her feet flipped over her head and as she was swimming to the side of the pool her back was hurting. That seemed to heal and there is not back pain any more. She then began to tremble. As you would hold her hand you could feel trembles in her arms and hands. She began have hallucinations, which prompted Christine, (her mother), to take her to emergency at children's hospital in Columbus. They gave her some anti anxiety med which really dopes her up. This trembling has progressed to arms flailing uncontrollably and her can't hold her head up and she can't speak because of the trembling in her neck and voice. She is beginning not to be able to swallow when she sucks on a straw. She was walking with her mothers help and has progress to the point of not walking at all. She has head, neck IGI's, Eeg's, blood tests, spinal tap - some tested at Nationwide Children's Hospital and some sent to Mayo Clinic - all come back normal. The last Tuesday was started an IV Ig treatment of 4 hour drip for 4 days, hoping to treat lupus, auto immune problems. Saturday was the last treatment. The tests came back that those were not the problems. She is on the Neurology floor at Children's hospital where she has been all the times she has been in the hospital. Last night they did an longer Eeg and have monitored her all night. Love, Mother

I know it's a long shot but if anyone has any ideas let me know. She's 14 and too young to have these health problems.

TIA

luvboston · November 2011

I didn't see on their that they did an mri scan of her whole body. Also have they taken a stool sample to make sure she didn't get a food born illness? Have them Contact Dr. Michael Scott at Children's Hospital Boston https://specialists.childrenshospital.org/directory/profile.asp?dbase=main&setsize=5&pict_id=9903110

He is a neurosurg but is very old and wise and really helped my lil sis

Also have they tested her for dermatitis herpetiformis

Also some children that have ongoing food allergies get neuro symptoms.

If all else fails contact Tom Tam he is a chinese healer

https://www.tomtam.com/