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This post is from a discussion on another seizure disorder group, where we discussed it originally in 2004. 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, 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 [ame="http://www.amazon.com/exec/obidos/ASIN/0721604013/wgntvonline"]Amazon.com: Conn's Current Therapy, 2004 (9780721604015): Robert E. Rakel MD, Edward T. Bope MD: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/21YMNBPE48L.@@AMEPARAM@@21YMNBPE48L[/ame]. 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.
==============
http://onefamiliesjourney.blogspot.com/
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, 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 [ame="http://www.amazon.com/exec/obidos/ASIN/0721604013/wgntvonline"]Amazon.com: Conn's Current Therapy, 2004 (9780721604015): Robert E. Rakel MD, Edward T. Bope MD: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/21YMNBPE48L.@@AMEPARAM@@21YMNBPE48L[/ame]. 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.
==============
http://onefamiliesjourney.blogspot.com/
