18 Nov 2010
Pyridoxine – Vitamin B6
I am looking for first hand experience with vitamin B6 and any of “our kids” (if I may be so bold). It is sometimes used specifically with infantile spasms or to counter negative side effects of the anticonvulsant Keppra, as well as other neurological issues.
I am not looking for other information, not opening a discussion on homeopathy, alternative treatments, etc. Nor do I need links to studies, I have researched many. I am purely interested in first-hand experience, either in the comments or via a private email.
Thanks in advance.
You might want to ask on the Facebook page for Prader Willi Syndrome Problem Solving. A lot of the parents use supplements of various kinds and might have had experience with that particular one. It’s no guarantee, but might be a lead for you.
http://www.facebook.com/pages/Prader-Willi-problem-solving-solutions-exchange/111542802212411
Sophie was tested for the B6 deficiency when she was diagnosed with infantile spasms at three months of age. She tested negative. We tested her again later and it was still negative. However, we do give her a multi-B vitamin — mainly for “female” issues on the advice of her naturopath. I’ve never heard about Keppra and B — and Sophie has been on Keppra for almost eight years. Don’t ask me why, though, since it doesn’t help her one bit.
We tried it when my dd was diagnosed with Infantile Spasms. She was about 5 months I think. Took it for quite awhile and saw no benefits.
I have heard about Keppra and B-complex. We haven’t really seen any change, but Marissa is noncommunicative so I really don’t know if it does any good.
We give it anyhow.
My son Thomas was on B-6 for about a month while on Keppra-Keppra did nothing and didn’t notice that the B-6 did anything either. He had IS for about 6 weeks at 9 months old,resolved on day 3 of ACTH, seizure free on no meds for 10 years then started with “epileptic spasms”. Currently controlled with Depakote and Felbatol.