Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
vitamine B6 dependant epilepsy, want to find others......
Tue, 11/02/2004 - 01:43Topic: Family & Friends
Dear reader,I am a mother of a son (almost 2 years) that has vitamine B6 (pyridoxine) dependant epilepsy (he has no authism). I would like to get in contact with other people/parents that have the same illness. It is only 20 years ago that this type of epilepsie has been discoverd. So I dont know if there are many among you, but I would like to exchange information, thoughts and feelings. I would like know what prospectives my child has. We just found out that when Sam (my son) had a fever he had an attac. So B6 on his own is not always enough. Maybe their are more things that can end up in a seizure. We would like to find out.Thanks,Bomy email addres is: bo@kruiper.org
Comments
RE: vitamine B6 dependant epilepsy, want to find others......
Submitted by bokruip on Tue, 2004-10-19 - 12:50
Dear Tibet,thank you so much for this information.I mailed a few people with a child with the same disorder. I hope i get a reply.You are a star,Bo
RE: RE: vitamine B6 dependant epilepsy, want to find others.....
Submitted by tibet2 on Tue, 2004-11-02 - 01:43
bump for erikathis is a long shot. but vitamin B6 dependent epilepsy ( pyridoxin dependent) is one scenario where seizures occur prior to birth. you might try mailing bo and talking to her.
RE: vitamine B6 dependant epilepsy, want to find others......
Submitted by tibet2 on Mon, 2004-10-18 - 17:55
hi bo, here's a link to a couple of good sites for parents of kids with epilepsy. you can do a search by diagnosis and find other parents of kids with B6 dependant E. http://www.kidsepilepsy.com/http://www.our-kids.org/if you go to MGH braintalk and go to the child neuro board there are other families dealing with the same problem. http://brain.hastypastry.net/forums/i hope that connects you to a few families coping with the same problem. best of luck.