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Medical Forum / Diseases and Disorders / Epilepsy / January 2004

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TV on epilepsy, news link

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TVA12082208 - 14 Jan 2004 09:03 GMT
> http://wgntv.trb.com/news/local/eveningnews/wgntv-
> 011204medicalwatch,0,1082269.story?coll=wgntv-evening-news-2

Monday, January 12

Vitamin B6

This vitamin saved a dying baby's life and her family figured it out by
looking in the encyclopedia.
A rare disorder and an easy treatment. The latest discovery that could help
children with seizures.
When Madeline first came home from the hospital it was a dream come true. But
in the first day, her parents knew something was wrong.
"She cried an awful lot, very irritable."
And she wouldn't eat.
"After each feeding she would just crunch in extreme pain."
By day eight, Madeline was in crisis. She had lost weight every day since her
birth. She was rushed to the hospital.
Colette McGuire, Madeline's mother remembers, "She was turning like a grayish
blue color and her eyes were starting to go back in her head and her
breathing was labored." Madeline's father, Jason, recollects, "There were 10
nurses
and physicians frantically working on her to stabilize her. They intubated her
to assist her breathing and um things looked very bleak at that point and she
continued to seize uncontrollably. "
No medication could stop the seizures so Madeline was put in a drug induced
coma. Doctors had no clue what to do until Madeline's grandfather, and also a
physician, looked in this book. The 2000 edition of Conn's Current Therapy
The section on childhood seizures had a small paragraph on pyridoxine
dependency and it said there that patients won't respond to normal seizure
medication
and that they need B6.
But the diagnosis was so rare doctors in Milwaukee were reluctant to accept
it. That's when the McGuires came to Children's Memorial Hospital in Chicago
where they gave Maddy B6 and confirmed the diagnosis -- pyridoxine dependency,
where the brain is overly excited because it's out of balance without B6.
Dr. Kent Kelly, assistant professor of pediatrics and neurology explains,
"There is an enzyme in the brain that requires B6 as a cofactor to produce its
proper action. So increase in the B6 allows it to work better. So it improves
the function."
And B6 has continued to help. No seizures. For this family that's something
to celebrate.
It's a genetic condition. In some cases families don't find out about it
until they've lost one child and a second one is born suffering with seizures.
Once a family knows there is a potential problem, the mother can begin taking
B6 during pregnancy and just give the vitamin to her newborn to prevent the
problem.

For more information:
Pyridoxine Dependent Registry
Support Group
Epilepsy Foundation Copyright © 2004, WGN-TV
   
   
TVA12082208 - 14 Jan 2004 16:58 GMT
Dear friends,
Whereas pyridoxine dependency (where patients really depend on B6 and cannot
survive without it) is fairly rare, another species: pyridoxine sensitivity is
of considerable frequency among those with seizures. This means that  a very
large number of patients are very responsive to vitamine B6. Even as little a
dosis as twentyfive to fifty milligrams of pyridoxine-hydrochloride given daily
in the morning can reduce seizures, depression, and sleeplessness.
It must be given as an add-on first, if AEDs are not weaned off, already.
It works better if given with the whole B-complex, even better with foods that
naturally contain vitamine B6 and the B-complex.
US citizens can buy it in their health food stores.
It is a lot cheaper than AEDs. But this is not the point. Vitamine B6 provides
the body with the agents it needs to properly digest the foods we eat, and it
does not - as do the AEDs - deplete the central nerves system of other vital
substances.
Friendly regards,
Katharina

In einer eMail vom 14.01.04 09:57:27 (MEZ) Mitteleuropäische Zeit schreibt
TVA12082208@aol.com:

No medication could stop the seizures so Madeline was put in a drug induced
coma. Doctors had no clue what to do until Madeline's grandfather, and also a
physician, looked in this book. The 2000 edition of Conn's Current Therapy
The section on childhood seizures had a small paragraph on pyridoxine
dependency and it said there that patients won't respond to normal seizure
medication
and that they need B6.
But the diagnosis was so rare doctors in Milwaukee were reluctant to accept
it.

In einer eMail vom 14.01.04 10:02:08 (MEZ) Mitteleuropäische Zeit schreibt
TVA12082208@aol.com:

http://wgntv.trb.com/news/local/eveningnews/wgntv-
011204medicalwatch,0,1082269.story?coll=wgntv-evening-news-2

>Subject: TV on epilepsy, news link
>From: tva12082208@aol.com  (TVA12082208)
[quoted text clipped - 66 lines]
>    
>    
gaross - 14 Jan 2004 23:00 GMT
 I'm not a Vitamologist.  Someone else here will show up.  I thought Most
Green vegetables contain Vitamin B?   So the earlier post about avoiding it,
would require avoiding Green Vegetables, and post below, might have been
solved with more use of Green Vegetables?
  The longer article quoted there earlier was a Particular Case of a Child
with a Particular Syndrome.  It ends (way at the end) saying the Syndrome is
RARE, but at the Beginning suggests that ALL CHILDREN should take
supplements to protect them in case they had the RARE condition?  Or did I
mis-read that?
   My Doctor years ago said that if 'we' have a balanced diet of fruits and
vegetables most of 'us' don't need supplements unless a particular AED
happened to use up more of a particular type.  G.

> Dear friends,
> Whereas pyridoxine dependency (where patients really depend on B6 and cannot
[quoted text clipped - 21 lines]
> The section on childhood seizures had a small paragraph on pyridoxine
> dependency and it said there that patients won't respond to normal seizure
********************************************************** ??
> medication  and that they need B6.
*****************************
> But the diagnosis was so rare doctors in Milwaukee were reluctant to accept
> it.
[quoted text clipped - 12 lines]
> >looking in the encyclopedia.
> >A rare disorder and an easy treatment. The latest discovery that could help
*****************
> >children with seizures.
*****G. * I don't understand if they meant that Children w. Seizures was
'Rare' or if they meant a particular type of childhood seizures that they
were discussing. /

> >When Madeline first came home from the hospital it was a dream come true. But
> >in the first day, her parents knew something was wrong.
[quoted text clipped - 6 lines]
> >blue color and her eyes were starting to go back in her head and her
> >breathing was labored." Madeline's father, Jason, recollects, "There were
10 nurses
> >and physicians frantically working on her to stabilize her. They
intubated her
> >to assist her breathing and um things looked very bleak at that point and she
> >continued to seize uncontrollably. "
[quoted text clipped - 12 lines]
> >Dr. Kent Kelly, assistant professor of pediatrics and neurology explains,
> >"There is an enzyme in the brain that requires B6 as a cofactor to
produce its
> >proper action. So increase in the B6 allows it to work better. So it improves
> >the function."
> >And B6 has continued to help. No seizures. For this family that's something
> >to celebrate.
> >It's a genetic condition. In some cases families don't find out about it
*********************************
> >until they've lost one child and a second one is born suffering with
> >seizures.
[quoted text clipped - 6 lines]
> >Support Group
> >Epilepsy Foundation Copyright ? 2004, WGN-TV
TVA12082208 - 17 Jan 2004 18:06 GMT
Dear Gaross and list,
The article was written by a journalist, not a specialist.
Here are the Clarifications you requested and marked  by ****:

1. "Normal medications" are the AED brand names frequently discussed here in
this group.

2. "Rare" means that in all the different types of epilepsy that occur in
children, Pyridoxine-dependency (PD) is rare. If not diagnosed and treated
properly [with either pyridoxine-hydrochlorid or pyridoxal phosphate ], these
children must die very young sometimes as newborns or infants, or they
inevitably become children of special needs in various fields and degrees, such
as cognitive and sensory and motor and behavioral skills. ONLY
pyridoxine-hydrochlorid or pyridoxal phosphate (two forms of B6)  can save them
from such a fate, not because they lack B6 in their nutrition, but they CANNOT
METABOLIZE B6 from their nutrition. It is inborn.  But if they ARE diagnosed
properly and if they DO get the B6, they are as bright and promising as any
other little child. The word Dependency is used here in a medical sense, and
refers to the process of metabolism of neurotransmitters where  B6 is required.
"Dependency" is not used in a psychological sense here.
Pyridoxine dependency is one of the rare metabolism diseases(, just like
phenylketonuria PKU. Same thing there: right diagnosis and treatment, no
disablement).

3. Yes, pyridoxine dependency is genetic, it is inborn.

4. Gaross,  
a) the first post was not by me, but a complete quote of an article with a link
to its source.  
The second post was a comment and further info by me, as is this one.
b) I do not see where you took the reading from that one should avoid B6. Is it
that you took "dependency" for something bad, as expressed in the psychological
sense of "dependency"? If so you misunderstood the use of the word dependency
here. please see above it is explained in number 2. : "dependency" in
"Pyridoxine dependency" is a MEDICAL term. It is often the case that different
sciences use the same vocabulary, but the word means entirely different things
in a different entourage. Misunderstandings will linger on until the terms are
clarified.

5. Now, pyridoxine dependency is rare, but pyridoxine sensitivity IS NOT RARE,
IT IS A WEAKER FORM OF pyridoxine dependency. It also affects the metabolism of
neurotransmitters. While PD children mostly need their dosage as injection, in
cases of emergency even as intravenous injection, those with the weaker form
can take tablets.  
Now, if people are pyridoxine sensitive (onset of epilepsy is much later in
life) i. e. they have a weaker form of this metabolic disorder which will give
them seizures, imagine what happens, if they DO have seizures, go to the
doctor's and get a wrong diagnosis (metabolic disorder goes undiagnosed!!!) and
on top of being misdiagnosed,  the AEDs they are given will deplete them of B6!
that will worsen their condition, chronify their condition, and I do not need
to tell you what else in daily life.

So my second posting refers to this weaker form.

Result: we have the possibilities: someone with seizures is
a) pyridoxine dependent i. e. has a heredetary metabolic disorder (desasterous
if misdiagnosed)
b) pyridoxine sensitive or responsive (as a synonym) i. e. weaker form of
metabolic disorder (very detrimental if misdiagnosed, becomes chronically ill )
c) pyridoxine depleted by malnutrition (seizure frequency and other symptoms of
the central nerve system rise)
d) pyridoxine depleted by AEDs (meds don't work well, they might even cause
seizures  and other symptoms of the central nerve system rise)
e) pyridoxine depleted by AEDs plus malnutrition (add c) plus d) and suffer
chronic illness)

Even people without seizures who are depleted of B6 have bad symptoms as
depression, sleeplessness, irritability, headaches, migraines, incontinence
etc.

If you don't take Dilantin at the moment (Dilantin and B6 interfere with each
other), I want to encourage you to try, if you are depleted of B6. And do not
let your MD talk you out of it.

I am not very often reading and writing on the board, so
anyone with further questions may contact me offlist
email   webpostbox1@aol.com
subject line: alt.epilepsy.support
other subject lines will be kicked off the server.

Best to you, Gaross and all,
Katharina

>Subject: Re: TV on epilepsy, pyridoxine sensitivity
>From: "gaross" gaross@rogers.com
[quoted text clipped - 137 lines]
>> >Support Group
>> >Epilepsy Foundation Copyright © 2004, WGN-TV
 
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