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Dateline NBC: "CJs Story"
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gaross
Nov 3, 2002, 7:36:47 PM11/3/02
to
I'm sorry that other places not 'downstream' of Eastern time, North America,
might not be able to see this, unless you can find a way to NBC's Archives,
but at 7PM Eastern time, a TV Program called "Dateline NBC" is carrying
story above.
It's about a young boy(CJ), about 7? who has some type of progressive
Epilepsy. And his parents are deciding to take him to Australia for his
Surgery, since the State they live in have never done the Surgery (through
the top of someone's head) to remove a Tumour he has that's causing his
particular type of seizures. It's affecting his Short Term memory, so
likely near one of the Temporal Lobes.
Anyway, if someone is West of Eastern time, you might have it still
coming up where you are, OR it's in progress on Eastern Time. G.R.
might not be able to see this, unless you can find a way to NBC's Archives,
but at 7PM Eastern time, a TV Program called "Dateline NBC" is carrying
story above.
It's about a young boy(CJ), about 7? who has some type of progressive
Epilepsy. And his parents are deciding to take him to Australia for his
Surgery, since the State they live in have never done the Surgery (through
the top of someone's head) to remove a Tumour he has that's causing his
particular type of seizures. It's affecting his Short Term memory, so
likely near one of the Temporal Lobes.
Anyway, if someone is West of Eastern time, you might have it still
coming up where you are, OR it's in progress on Eastern Time. G.R.
Cows69
Nov 4, 2002, 7:11:20 AM11/4/02
to
I watched it last night and it was great, CJ was a 4 and half year old little
boy with HH, not sure the spelling of the disorder. He had a tumor in the base
of the brain and the surgery has been performed successfully on 24 children
throughout the world, but only done in Australia. At the end of the story CJ
so far has progressed with no seizures, the mother notes small jerks or CJ
saying like he felt a "spark" coming nothing ever happened. His surgery wa
done in February. It was a great story to see, and hopefully docs here will
get their butts in order and realize that thsi has promise. Ann
boy with HH, not sure the spelling of the disorder. He had a tumor in the base
of the brain and the surgery has been performed successfully on 24 children
throughout the world, but only done in Australia. At the end of the story CJ
so far has progressed with no seizures, the mother notes small jerks or CJ
saying like he felt a "spark" coming nothing ever happened. His surgery wa
done in February. It was a great story to see, and hopefully docs here will
get their butts in order and realize that thsi has promise. Ann
gaross
Nov 5, 2002, 2:12:40 PM11/5/02
to
I realize some of the Health cases like this might involve someone who has
lived with the seizures all their life, in this type of case, so what they
are feeling is 'normal' for them. But for them, and their Parents waiting
in the 'waiting' room, it still was *inspiring to see the type of Bravery
they had to have to decide to go ahead with an Operation that wasn't without
risk.
In CJ's case (not unlike the Cellist [Martha Curtis] who was about 20 on
a PBS? program aired last year, who risked losing her Memory or Ability to
play the Cello if they accidentally removed the wrong part), it was still an
inspiring story of the Courage and Faith they had to feel, to decide to go
ahead with the Surgery.
lived with the seizures all their life, in this type of case, so what they
are feeling is 'normal' for them. But for them, and their Parents waiting
in the 'waiting' room, it still was *inspiring to see the type of Bravery
they had to have to decide to go ahead with an Operation that wasn't without
risk.
In CJ's case (not unlike the Cellist [Martha Curtis] who was about 20 on
a PBS? program aired last year, who risked losing her Memory or Ability to
play the Cello if they accidentally removed the wrong part), it was still an
inspiring story of the Courage and Faith they had to feel, to decide to go
ahead with the Surgery.
I'm glad some of you (hopefully) got a chance to see the show.
(The content wasn't listed in the TV Guide, nor had there been any
'Teaser Ads.' like some stations run to tell you about a show coming up
'later tonight' or 'later this week'. I just happened to click onto it. It
wasn't one I'd usually check if I'm looking for Current Events and News
items that pertain to Canada.)
Now that our Cable TV is above 40+ channels, the Percentage of Chaff to
Content has gone up also. Luckily, the other 39 stations banded together
and had really Boring Stuff, or I might have missed it too! :-< G.R.
"Cows69" <cow...@aol.com> wrote in message
news:20021104071120...@mb-mb.aol.com...
SallyLou
Nov 6, 2002, 10:30:36 AM11/6/02
to
I'm a member of the support group that was mentioned several times in
the Dateline show about CJ, and wanted to de-lurk here to give a plug
to our homepage: www.hhugs.com . Please stop by when you can, to find
out more about the gelastic seizures and hypothalamic hamartoma, and a
LOT more about CJ, the operation that he had (and the Wizards of Oz -
the Australian doctors - along with the procedure itself.) And if you
- or someone you know - have the same condition, please drop us a
line!
the Dateline show about CJ, and wanted to de-lurk here to give a plug
to our homepage: www.hhugs.com . Please stop by when you can, to find
out more about the gelastic seizures and hypothalamic hamartoma, and a
LOT more about CJ, the operation that he had (and the Wizards of Oz -
the Australian doctors - along with the procedure itself.) And if you
- or someone you know - have the same condition, please drop us a
line!
Sally, the Semi-Senior HH Kid
"gaross" <gar...@rogers.com> wrote in message news:<IKUx9.199062$%h2.1...@news02.bloor.is.net.cable.rogers.com>...
Meckie
Nov 6, 2002, 11:15:09 AM11/6/02
to
My husband was flipping channels and just happened to find this show, too.
It was a great show. I also happened to see it the night before my
appointment with my epileptologist. He is also a surgeon and the head of
the Epilepsy Center at Washington University Dept. of Neurology at Barnes
Jewish Hospital. He is one of those rare docs who loses track of time while
he's talking with you during your appointment...anyway...he is alway talking
about the new different things they are doing there. Studies, experiments,
he tries to stay on the cutting edge. SOOOOOOOOOOOOOOOOOO, I just had to ask
him about this!!
YES! They are already starting to do this surgery there, only with
gamma knife (laser) surgery technique. (I don't remember what the
Australians used, I *saw* it, but don't know what the term was for it). He
was absolutely open to it. I was so happy.--And I could hardly wait to tell
you all! :-)
The thing that bothered him most (he did not see the program, I told him
about it) was that it took a really Rare type of epilepsy to hit
Dateline....when he sees people everyweek who have epilepsy whose seizures
are not under control simply because their epilepsy has been misdiagnosed.
Then, they are on the wrong medication that won't treat the seizures that
they are having and never will and all because they haven't been properly
diagnosed. he said he even has a problem with the hospital right there
(!) -in the ER- if someone comes in having a seizure, they just give them
Dilantin. Why? Because Dilantin is the #1 prescribed anti-convulsant on
the market in the U.S. Even though it won't control all types of seizures
or all types of epilepsies, that is what everybody prescribes.
"Oh, it's a seizure! We know how to take care of a seizure!" they tell
him. (He was rather frustrated, kinda like we get!)
It was a great show. I also happened to see it the night before my
appointment with my epileptologist. He is also a surgeon and the head of
the Epilepsy Center at Washington University Dept. of Neurology at Barnes
Jewish Hospital. He is one of those rare docs who loses track of time while
he's talking with you during your appointment...anyway...he is alway talking
about the new different things they are doing there. Studies, experiments,
he tries to stay on the cutting edge. SOOOOOOOOOOOOOOOOOO, I just had to ask
him about this!!
YES! They are already starting to do this surgery there, only with
gamma knife (laser) surgery technique. (I don't remember what the
Australians used, I *saw* it, but don't know what the term was for it). He
was absolutely open to it. I was so happy.--And I could hardly wait to tell
you all! :-)
The thing that bothered him most (he did not see the program, I told him
about it) was that it took a really Rare type of epilepsy to hit
Dateline....when he sees people everyweek who have epilepsy whose seizures
are not under control simply because their epilepsy has been misdiagnosed.
Then, they are on the wrong medication that won't treat the seizures that
they are having and never will and all because they haven't been properly
diagnosed. he said he even has a problem with the hospital right there
(!) -in the ER- if someone comes in having a seizure, they just give them
Dilantin. Why? Because Dilantin is the #1 prescribed anti-convulsant on
the market in the U.S. Even though it won't control all types of seizures
or all types of epilepsies, that is what everybody prescribes.
"Oh, it's a seizure! We know how to take care of a seizure!" they tell
him. (He was rather frustrated, kinda like we get!)
Anyway, I wanted you all to know, that that surgery is beginning to be done
here in the States, that Dateline didn't do ALL of their homework, and that
there is a doctor out there fighting for all of us!
Meckie
"Cows69" <cow...@aol.com> wrote in message
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