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Pyridoxine Dependent Epilepsy

Thu, 11/01/2007 - 08:44
My name is Andrew and I am 37yrs old. I have a very rare type of epilepsy known as Pyridoxine Dependent Epilepsy. I had my first seizure at two weeks old. I was in mum’s arms at home and the seizure was in the form of a slight tremble. I was about 3 weeks old when I had my next seizure. After this I was having many ‘different types’ of seizures a day. Phenobarbital was administered, which turned out to be ineffective. At about 5 weeks old I was admitted to hospital. I spent the first five to six months of my life in and out of hospital. Doctors were mystified by my illness. None of the ‘normal’ antiepileptic drugs that were administered had any positive effects. When I had a severe seizure in hospital doctors administered Paraldehyde to bring me out of the seizure and keep me sedated. Countless tests were done including, EEGs, lumber punctures… etc. A top pediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine HCL (vitamin B6). All antiepileptic drugs were withdrawn and the Pyridoxine HCL was administered (I was five months old). Within two to three days my mother noticed a big difference in me. I’d stopped having severe seizures. I’ve been taking Pyridoxine HCL ever since. When I was 15 years old I underwent a very unsuccessful two year therapeutic trial of AEDs. At 19 years of age I discovered a multi B complex tablet. I had searched for one that contained at least 50mg of Pyridoxine HCL (same as what is in one of the B6 tablets that I am prescribed). The idea was to replace one of these. Since I have been taking this Multi B complex I rarely experience my aura. The only seizures I have now are absent type seizures. I also eat plenty of oily fish (Omega 3) and I have recently added a Magnesium tablet to my daily intake of B vitamins. I do not use any AEDs to control my seizures. http://faculty.washington.edu/sgospe/pyridoxine/index.html http://www.epilepsy.org.uk/info/pyridoxine.html https://tspace.library.utoronto.ca/bitstream/1807/2503/1/pn04035.pdf http://health.groups.yahoo.com/group/b6children/ copy and past the the above URLs into Internet Explorer if they fail to open. Thank you for your time, Andrew

Comments

Re: Pyridoxine Dependent Epilepsy

Submitted by mum2dt on Tue, 2008-03-04 - 13:24

9Hi Andrew,

Thank you for your post. Our son is 8 months old and has just been started on pyridoxine. He suffers from prolonged focal motor seizures that are unilateral, and can last up to an hour before being brought to an end with anesthetic. The seizures can be either side, but never at the same time. Rescue meds including rectal diazepam and buccal midazolam have not worked. We are going to try paraldehyde. He does not lose consciousness. They begin with tremors in his hand (extended arm and gentle 'punching') and quickly spread to mouth, lips, side of face, eye, and eventually toes, foot and leg. He does no have any other type of seizure.

How does this compare with your experience?

All best wishes.

9Hi Andrew,

Thank you for your post. Our son is 8 months old and has just been started on pyridoxine. He suffers from prolonged focal motor seizures that are unilateral, and can last up to an hour before being brought to an end with anesthetic. The seizures can be either side, but never at the same time. Rescue meds including rectal diazepam and buccal midazolam have not worked. We are going to try paraldehyde. He does not lose consciousness. They begin with tremors in his hand (extended arm and gentle 'punching') and quickly spread to mouth, lips, side of face, eye, and eventually toes, foot and leg. He does no have any other type of seizure.

How does this compare with your experience?

All best wishes.

Re: Pyridoxine Dependent Epilepsy

Submitted by Andrew314 on Thu, 2008-03-13 - 17:29

I had my first seizure when I was two weeks old. I was in mum's arms at home and the seizure was in the form of a slight tremble (my whole body) which only lasted a few seconds.   After this my seizures became more severe.  Some of the seizures were very similar to what you have discribed and some were only quick body jerks.  Any of these seizures would happen several times a day.  I was ok when I was asleep but my seizures could start very soon after waking.  When I was in hospital Paraldehyde was sometimes used to stop my severe seizures. After I was introduced to vitamin B6 (Pyridoxine HCL*) my parents realized that I had to take vitamin B6 as soon as I awoke and at regular intervals four time a day.

Regards

Andrew

*I have read that some children's seizures do not respond to Pyridoxine HCL.  Pyridoxal 5'- Phosphate (PLP) is another form of vitamin B6 which is used to treat vitamin B6 dependent seizures.  Please ask your doctor.

I had my first seizure when I was two weeks old. I was in mum's arms at home and the seizure was in the form of a slight tremble (my whole body) which only lasted a few seconds.   After this my seizures became more severe.  Some of the seizures were very similar to what you have discribed and some were only quick body jerks.  Any of these seizures would happen several times a day.  I was ok when I was asleep but my seizures could start very soon after waking.  When I was in hospital Paraldehyde was sometimes used to stop my severe seizures. After I was introduced to vitamin B6 (Pyridoxine HCL*) my parents realized that I had to take vitamin B6 as soon as I awoke and at regular intervals four time a day.

Regards

Andrew

*I have read that some children's seizures do not respond to Pyridoxine HCL.  Pyridoxal 5'- Phosphate (PLP) is another form of vitamin B6 which is used to treat vitamin B6 dependent seizures.  Please ask your doctor.

Re: Pyridoxine Dependent Epilepsy

Submitted by mum2dt on Thu, 2008-03-27 - 00:41
Thanks for this Andrew. All best to you. PS. We are using Pyridoxal-5-Phosphate.

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