RE: 8 YEAR OLD IN TROUBLE

Lindstrom, Ann (annlindstrom(AT)lucent.com)
Sat, 16 Jan 1999 21:50:29 -0800

Alice - so sorry to here that there are two cases of myelitis in the
family. Your granddaughters case may not be as severe as your daughter's.
They are all different levels. But, by all means, have some other neuros
look at her. There is so much research being done, and so much being
discovered about the nervous system, maybe another doctor can give you a
better diagnosis. To say someone has myelitis is like saying someone has
chest congestion. You don't know if the congestion is from a cold,
pneumonia or something else. Myelitis can be caused be several things - it
is damage to the myelin sheath. The doctor's gave me the same diagnosis
four years ago - I'm still pushing to find out more - Ann

> -----Original Message-----
> From: ALICE ROGERS [SMTP:tarprent(AT)gte.net]
> Sent: Friday, January 15, 1999 7:40 AM
> To: tmic-list(AT)eskimo.com
> Subject: 8 YEAR OLD IN TROUBLE
>
> Good Morning,
> I just found your list and am hoping some of you can help us.
> My oldest daughter was diagnosed with Acute Transverse Myelitis in
> Sept. 1994. She spent 3 months in the hospital and came home paralyzed
> from the armpits down. It took about a year but she is walking and
> doing very well. Of course there are occasional relapses and always
> pain, but she has learned to just live with it.
> Our problem now----my youngest daughters 8 year old daughter has just
> spent 4 days in the hospital. On Monday whe was walking across the
> floor and her legs just colapsed from under her. She cried with severe
> pain in her lower back, from about L2 down. There was immediate
> swelling in that area. Her doctor admitted her to the hospital right
> away. After numerous tests nothing definite was found. She was sent
> home, still in pain, and still with the swollen lump at the lower part
> of her spine. The neurologist said she may have a "mild case of
> myelitis". When told about the Aunt having ATM he just said 'really?
> That's interesting." and walked out of the room. He told my grand
> daughters parents that even if this is myelitis they shouldn't worry
> just make sure she gets plenty of bed rest and increase the pain
> medicine if it gets worse. If the symptoms seem to be getting worse
> bring her back to the hospital. She has marked weakness on the right
> side with some loss of sensation in the lower leg.
> After our experience with our oldest daughter any mention of myelitis
> is taken very seriously. I don't feel that my grand daughters doctors
> are being adequately thorough in determining what is wrong with her.
> Do any of you know of a spinal spcialist in the Panama City, Fla area?
> Tallahassee is close enough also. If absolutely necessary she can be
> transported to Shands Hospital at the University of Florida but we
> would like to minimize travel as much as possible.
> Thanks for any help you can give.
> Alice Rogers
> Tarpon Springs, Fla.