Re: WGN broadcast on B6 / pyridoxine dependency

[Guest guest]

Two links for the TV news.

> http://wgntv.trb.com/news/local/eveningnews/wgntv-

011204medicalwatch,0,1082269.story?coll=wgntv-evening-news-2

<http://wgntv.trb.com/news/local/eveningnews/wgntv-

011204medicalwatch,0,1082269.story?coll=wgntv-evening-news-2>

>

[Guest guest]

In einer eMail vom 14.01.04 09:53:01 (MEZ) Mitteleuropäische Zeit schreibt

TVA12082208@...:

> 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, , 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 <A

HREF= " http://www.amazon.com/exec/obidos/ASIN/0721604013/wgntvonline " >Conn's

Current Therapy </A>

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 , 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:

<A HREF= " http://faculty.washington.edu/sgospe/pyridoxine/ " >Pyridoxine Dependent

Registry</A>

<A HREF= " b6children " >Support Group</A>

<A HREF= " http://www.epilepsychicago.org/ " >Epilepsy Foundation</A> Copyright ©

2004, WGN-TV

[Guest guest]

I saw it, it's amazing that the grandfather, being a doctor himself, had

to convince other docs to try the B6 IV to help his grandbaby.

Grace

On Wed, 14 Jan 2004 03:51:44 EST TVA12082208@... writes:

> Two links for the TV news.

>

>

> > http://wgntv.trb.com/news/local/eveningnews/wgntv-

> 011204medicalwatch,0,1082269.story?coll=wgntv-evening-news-2

>

> <http://wgntv.trb.com/news/local/eveningnews/wgntv-

> 011204medicalwatch,0,1082269.story?coll=wgntv-evening-news-2>

> >

>

>

>

>

[Guest guest]

Hi Folks,

This message was originally posted in 2004 (#1136). It is a news story

showing that doctors often overlook B6 dependency (and deficiency) as a cause of

seizures and a child who nearly died as a result of unrecognized B6 dependency.

Some of you may recognize your own situation in this article. A link to an

update about the family is below.

Zoe

>

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, , 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 <A

HREF= " http://www.amazon.com/exec/obidos/ASIN/0721604013/wgntvonline " >Conn's

Current Therapy </A>

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 , 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.

==============

http://onefamiliesjourney.blogspot.com/

[Guest guest]

I take B6 and B12 along with Bacopia and Fish Oil to help control my Memory loss

due to Epilepsy.  So this does not surprise me.

 

Deborah Alonso

From: zoe88025 <Zll51@...>

Subject: [ ] Re: WGN broadcast on B6 / pyridoxine dependency

Date: Monday, February 8, 2010, 9:46 PM

 

Hi Folks,

This message was originally posted in 2004 (#1136). It is a news story showing

that doctors often overlook B6 dependency (and deficiency) as a cause of

seizures and a child who nearly died as a result of unrecognized B6 dependency.

Some of you may recognize your own situation in this article. A link to an

update about the family is below.

Zoe

>

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, , 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 <A

HREF= " http://www.amazon. com/exec/ obidos/ASIN/ 0721604013/ wgntvonline " >Conn's

Current Therapy </A>

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 , 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.

============ ==

http://onefamiliesj ourney.blogspot. com/