I am curious about this too. Just Doesn't sound right. Janice
From: Gary Thomas
Sent: Saturday, March 13, 2010 10:48 PM
To: Pieter and Heather ; jrushton ; j ra ; tmic
Subject: Re: [TMIC] Re: Hope
I wonder about this also. What surgery would help? Does a medical person not
familiar with TM think it is an ongoing inflammation continuing to do damage?
Not sure if I have heard of headaches as a result of TM, but spasms, yes, and,
of course bladder and bowel dysfunction due to TM. The girl could be helped by
thereapy but, again, what is the surgery for?
Gary
----- Original Message -----
From: Pieter and Heather
To: jrushton ; j ra ; tmic
Sent: Friday, March 12, 2010 7:24 PM
Subject: Re: [TMIC] Re: Hope
I have a question. In the write up it says this young girl needs surgery.
I'm wondering what type of surgery will help her. Also this statement doesn't
make sense to me from the article She said if her daughter's condition remains
untreated paralysis could become permanent and in a few cases transverse
myelitis has been fatal, travelling to the upper body and paralysing the heart,
lungs and other vital organs.
I am wondering how it can now travel to the upper body and paralyze heart
lungs etc if the original damage is already done?
Am I reading this wrong?
Just wondering is all.
I'm sorry to hear of any child who has to join the ranks of us with TM.
Heather in Calgary
----- Original Message -----
From: jrushton
To: j ra ; tmic
Sent: Friday, March 12, 2010 3:16 PM
Subject: RE: [TMIC] Re: Hope
Do they have Shriner's or have they called them because they will
always help when it comes to a child. Also, St. Judes. Gosh, it would be
wonderful if one of them would come thru for her!! Jeanne in Dayton, WA
-------Original Message-------
From: j ra
Date: 3/12/2010 3:45:15 PM
To: [email protected]; [email protected]; Transverse Myelytis
Subject: RE: [TMIC] Re: Hope
Hi everyone,
I have to ask a favour. This is a case that I'm personally getting
involved with and I need some help. It's a pediatric case and I need some
advice as to the best place for the child to receive care. Please read the
article.
FULL STORY
Paralysed girl needs $1.9m for surgery
Julien Neaves [email protected]
Monday, March 8th 2010
SERIOUS CONDITION: Christa Brumant at her home in
Tunapuna last week. -Photo: ANISTO ALVES
ON SEPTEMBER 19 last year then nine-year-old Christa
Brumant awoke at about 6 a.m. with terrible abdominal pains and was taken to
hospital. Five hours later Christa was paralysed from the waist down.
'She said 'mummy I can't walk',' her mother, Ramona
Eligon, recalled.
Christa spent 47 days at Mt Hope Paediatric Hospital
where doctors diagnosed her with a condition called transverse myelitis, a rare
neurological disorder caused by inflammation of a segment of the spinal cord.
Her family is attempting to raise $1.9 million for
medical treatment and rehabilitative therapy at the Johns Hopkins Hospital and
the Kennedy Krieger Institute in Maryland, USA for May 4.
When the Express visited their Tunapuna home last week,
Christa, now 10, was sitting in the wheelchair that she has been confined to
since September.
She was checking out a Barbie Girls website and later
raised her hands in triumph that she was a 'VIP' on the site. She was not in
any visible pain during the interview.
Eligon said her daughter has no feeling from the waist
down but suffers from painful muscle spasms daily, at times so severe that she
would stiffen and fall off the chair.
Her other symptoms include daily headaches, back pain so
severe that it keeps her awake for hours, nausea and acute bladder and bowel
dysfunction. Eligon is extremely worried that her daughter is unable to
defecate for days sometimes, which could lead to a build-up of toxins and
further complicate her medical problems.
She said if her daughter's condition remains untreated
paralysis could become permanent and in a few cases transverse myelitis has
been fatal, travelling to the upper body and paralysing the heart, lungs and
other vital organs.
The family has been able to raise $35,000 so far and has
applied for the Health Ministry medical grant of US$10,000 for children
requiring medical treatment abroad. The Education Ministry has provided a
personal aide to assist Christa as she attends classes at Tunapuna Girls' RC,
and her mother noted she is an 'A' pupil.
Eligon has had to take leave from her job as an
administrative assistant to help care for her daughter and was thankful for the
support of her husband, Evris. To help raise funds the family is hosting a
cruise on March 26 aboard the Treasure Queen and 'An Evening of Elegance' on
May 1. For more information call 777-5080 or 395-5727.
'I really convinced that if everyone in the country opens
their hearts and makes a small contribution not only my daughter can be helped
but others needing assistance can be helped.'
As the Express left the home, Christa wheeled herself
outside, smiled and queenly waved good-bye.
----------------------------------------------------------------------
From: [email protected]
To: [email protected]; [email protected]
Date: Thu, 11 Mar 2010 08:50:25 -0600
Subject: [TMIC] Re: Hope
Love to hear that stuff!!!
Janice
From: Janet Dunn
Sent: Thursday, March 11, 2010 12:36 AM
To: 'Janice Nichols' ; 'tmic'
Subject: Hope
I did forget to mention something: my right leg/foot has been the
afflicted one. The one that I struggle to make move. The one that causes the
pain. I thought it would be forever.
One day as I was listening to the radio, I had an "aha" moment. A
wonderful catchy song was playing, and I looked down and saw that my foot was
tapping in time to the music. I had not been able to do that for a long time.
I could have cried. So - yes, never give up. The positive changes are
sometimes such a part of our life that we fail to recognize them for what they
are.
Janet
From: Janice Nichols [mailto:[email protected]]
Sent: March 10, 2010 7:28 PM
To: Janet Dunn; 'tmic'
Subject: Re: [TMIC] Lesions and Myelin Regeneration
"DITTO", Jan!!!
Janice
From: Janet Dunn
Sent: Wednesday, March 10, 2010 12:06 PM
To: 'tmic'
Subject: RE: [TMIC] Lesions and Myelin Regeneration
I think that the improvement happens. For everybody? Depends. I
have found a few improvements in areas, and some worsening in other areas. I
take it one day at a time, because as we all know, anything can and usually
does happen. But I drag my leg less now, and the intense banding eases up more
readily. So I remain ever hopeful. And it has been since July 2004 that I
have been afflicted.
Janet
From: Jan Hargrove [mailto:[email protected]]
Sent: March 10, 2010 8:51 AM
To: lynne myers; tmic
Subject: Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me
that
I wouldn't get well, nor give me a timeline. The only thing he said
would
not return was my temperature control. He was right!! AND, I've had
improvements throughout the 14 years tm's been in my life........no
matter
how small, improvement is improvement and gives hope for more to
come!!
My 2ยข janh
----------------------------------------------------------------------
From: lynne myers <[email protected]>
To: tmic <[email protected]>
Sent: Wed, March 10, 2010 6:26:13 AM
Subject: [TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM
website:
Even though the lesion(s) are gone, there may be underlying
nerve damage caused by the inflammation and the fact that the nerves were
"unprotected" once the myelin got "eaten" away. The myelin grows back at 1mm a
day, so it takes a while for the body to repair itself, BUT the nerve can
remain damaged.
You will know what damage is left at the 2 yr mark. After this
you can still have some recovery but it is very small and unlikely to be very
noticeable.
This information is provided by one of the site administrators
who is also a Registered Nurse.
----------------------------------------------------------------------
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