NeuroTalk Support Groups - Vitamin B6 Dependent Epilepsy, Dyslexia & AS

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Vitamin B6 Dependent Epilepsy, Dyslexia & AS

Hi All,

New kid on the block!

My name is Andrew. I had my first seizure at two weeks old. I spent the first 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. At this time I was having many ‘different types’ of seizures a day some of which went status. Countless tests were being done including, EEGs, lumber punctures… etc. A top paediatrician 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 Hydrochloride (vitamin B6). Pyridoxine Hydrochloride 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. Because of the positive effects that Pyridoxine had on my seizures doctors slowly weaned me off all the antiepileptic drugs (this was back in 1970-71). I’ve been prescribed Pyridoxine Hydrochloride on a daily bases ever since.

I have also had a late diagnoses of both Dyslexia and Asperger's Syndrome (AS).

Some of my interests include Computers, Computer Aided Design (CAD, both 2D & 3D), Cosmology, Biochemistry, Vitamins (mainly vitamin B6), Geometry and Solving Puzzles including the V-Cube 7 (a 7x7x7 version of the 3x3x3 Rubik's Cube).

Looking forwards to hearing your stories,

Andrew

Great to meet you!!

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Andrew,

:Wave-Hello:It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

My best advice for you is to see an Epileptologist at an Epilepsy Center you can usually find them at big or university hospitals, have your Doctor refer you to one and they can pinpoint the exact cause of your epilepsy. Get a calendar and start keeping track of your sz. write down what time it happens along with a discripition of the sz. Also try taking vitamin B12 1000 mcg. once a day it has reduced my sz. greatly. If the Dr. does an e.e.g. on you again ask them to flash different color strobe lights one at a time this will tell what colors are triggering sz. for you. Also avoid bright flashing like in a theater, just cover your eyes when appears in a movie.

Here is a forum for you to click. There you will finds some caring friends to assist you.

Epilepsy:
http://neurotalk.psychcentral.com/forum11.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene

pyridoxine dependent epilepsy

Quote:

Originally Posted by VitamanB6 (Post 1030670)

Hi Andrew!

My 5yr old son, Scott, has recently been diagnosed with pyridoxine dependent epilepsy. We have been searching for others with this rare genetic condition to network with! Would you be willing to share information with us? We are aware of all the medical research out There but would love some personal experiences so we can give our son the best care. We look forward to hearing from you!

Lisa (mom) and Scott