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Andrew314

Pyridoxine Dependent Epilepsy

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 All antiepileptic drugs were withdrawn and the Pyridoxine HCL was administered (I was five months old).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

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

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

Thanks for this Andrew.

All best to you.

PS. We are using Pyridoxal-5-Phosphate.

Re: Pyridoxine Dependent Epilepsy

Hi,

My daughter now 2 months has been diagnosed with pyridoxal phosphate dependent epilepsy.

We are giving her pyridoxal phosphate 25mg four times a day. I was just curious as to how your kid is doing now. What are the developmental issues and how it was resolved.

Thank you!

Re: Pyridoxine Dependent Epilepsy

My son started having seizures when he was five days old. The Doctors at Arkansas Children's Hospital diagnosed him with Pyridoxine dependent epilepsy. He spent his first month at the hospital, but is now at home doing well so far. I have not been able to find a whole lot of information on this until I came upon this site. If you don't mind me asking, what kind of set backs or delays did you have. My son has shown none so far, but he is only two and a half month's old.

Leigh

Re: Pyridoxine Dependent Epilepsy

Dear Andrew,

Hi! My son is diagnosed with PDS. He's 4 and I just got to know about it 3 days ago. He had almost the same experience as yours. His seizure first started when he was 7 days old. He is now on Topamax and 50mg pyridoxine. My worry is that, he is delayed in speech and fine motor skills. At 4, he can't really say any word properly, but he can understand what I say. Have you had this speech problem before? Did you go to any special school?

I really hope that you could share with me some of your experiences, as my husband and I feel very nervous about his learning capabilities and future. We are from Malaysia, and I'm not sure if there is anyone else here with this type of seizure. Although the doctors know about it, I would feel much better to hear from the family and those who have experienced it.

Best regards,
Ariza

Re: Pyridoxine Dependent Epilepsy

Hi Ariza,

I have two girls that were diagnosed at infancy. My oldest (now age 21) had similar delayed speech, but it was clear she was understanding everything we were saying. Luckily we had access to an early development program that provided speech therapy and extra help and within a year , right around kindergarten, she was fine.