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Pyridoxine Dependent Epilepsy
Thu, 11/01/2007 - 08:44Comments
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 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.