Re: Recent diagnosis

Larry Hlavsa (hlavsa(AT)pioneerplanet.infi.net)
Sun, 09 Nov 1997 13:02:01 -0600

At 10:48 AM 11/9/97 -0500, you wrote:
>My name is Jim Hoge and I am searching for information on TM. My 6 month
>old niece has recently (last week) been diagnosed with this condition. She
>is in Children's Hospital in Pittsburgh, PA. She is paralyzed from the neck
>down. Her parents have received limited information thus far. What I would
>like to know is what can we expect? Will she recover from the paralysis
>after the spinal swelling goes away? What is typical treatment? She is
>presently receiving steroid treatments. What are the typical causes?
> Assuming she will recover from her present condition, what is the likelyhood
>that this can re-occur? What kind of pain might she be experiencing now?
> Any other information that you feel might be helpful would be appreciated,
>especially if I could pass it on to my brother and his wife as encouragement.
> Thanks for your consideration and time.

Jim,

Sorry to hear about your niece. Our son--also at six months of age--wound
up paralyzed from the waist down. He had had some innoculations about 1
month earlier including the oral polio vaccine. I continue to be suspicious
that these shots may have been related to the TM. The doctors claim
otherwise, but I don't find their arguments compelling.

Galen spent five days in the hospital, was given many tests, but never any
kind of medication. He is now two years old. He recovered a lot, but did
not recover fully. The doctors say his problems are "nerve damage" related
to the TM. He can walk, but has a strange gait, and cannot walk very far.
The neurologist does not think he will progress much more; i.e. he will
walk in the future, but with noticeable problems.

Throughout his whole ordeal, Galen never seemed to have any pain. He slept
normally and smiled constantly. He shows no signs now of ever having any
pain. We're thankful for that.

I also have knowledge of a six month old girl in North Carolina who also
developed TM a month after having innoculations. I haven't called her
father in several months, but as I recall she was given steroids as
treatment. Her father when I spoke to him last seemed to think she was
going to recover fully.

I wonder how many kids are out there with TM that we just don't know about?

If you'd like to give my name and number to your relatives, feel free. I'd
also like to have their names and addresses. especially if your niece had
had innoculations prior to her diagnosis. I'd like to start a list of
parents of youngsters who've developed TM very early in life. Maybe we
parents can get some kind of support group going. I'm not aware that any
exists.

Anyway, I hope your niece shows improvement. Thanks for leeting this list
know about her case. Aagain, if you could give me the name, address, and
phone # of your nieces parents, I'd appreciate it.

Larry

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Larry Hlavsa
Webmaster
Asian Pen Pals
Box 25193
Woodbury, MN 55125
PH 612-714-4434
FX 612-714-5005
EMAIL: hlavsa(AT)pioneerplanet.infi.net
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