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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 All antiepileptic drugs were withdrawn and the Pyridoxine HCL was administered (I was five months old).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 lmajackson on Mon, 2012-10-22 - 16:57

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.

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.

Hi. My son Aidyn is going to

Submitted by tragicwasteoftime@hotmail.com on Tue, 2014-09-16 - 12:25
Hi. My son Aidyn is going to be three next month, and just last week he was diagnosed with PDE. His seizures started December 2013. And weren't controlled with keppra, lamectal, or topamax. We just started 50mg of vitamin b6 daily on top of 4ml of onfi twice a day, 3ml of levocarnitine every 8 hours, 2.5ml twice a day of valporic acid, 3ml once a day of valporic acid at 10pm, and 10ml of zonisamide at bedtime, plus 7.5mg of diazepam in case of a seizure lasting 3min or longer, a cluster of seizures, or more than 3 seizures in a twelve hour period. He's currently in speech and occupational therapy twice a week, and we're looking for early intervention through the schools as well. He's still having grand mal seizures a few times a week, as well as myoclonic and absent seizures daily. 

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