Vitamin B/Seizures

[mpalmer118]

Hi everyone,

I usually post on the Child Neuro and Epilepsy boards and someone suggested I post this here also.

Forgive my ignorance, but I have read a lot of references to people taking vitamin b to help with seizure control. But how do you determine that it is needed? or is it something that people have just tried and found some sucess with? How do you know how much to take? Rachel is only 6 and weighs about 57 pounds. Can anyone direct me somewhere for more info, or even better share your knowledge?

I appreciate any feedback.
__________________
Mary- Mom to Ryan, 15, Rachel, 6, dx with epilepsy (simple partials, complex partials) and nystagmus, and Reid, 8 months

[MotherMoon]

I can't say anything to seizures as it is not something I have ever had to deal with. I can say that B vitamins are generally very safe. They are water soluable so your body gets rid of what it does not need easily. You might want to get with your daughter's doctor and see what dosage you might start her out at. I am not sure if B complex is available in chewable form alone. B12 is. But, my 6 y/o just learned to swallow small pills. So maybe you can find a tiny pill for her. Unfortunately, my experience with B complex is they are huge.

[copperhead]

I don't have seizures but a b6 deficiency. The connection between B6 and seizures has been established.

I am not sure what dose your child would need. There can be some toxicity with b6, so the dose with b6 is important. And taurine is also good for seizures.

There may be others who know more about the seizures than I do.

[jcc]

You can check The Gluten File pages on Vitamin B6 deficiency (http://jccglutenfree.googlepages.com/vitaminb6)and Seizures (http://jccglutenfree.googlepages.com/seizuresepilepsy) where I have collected a few things I've found on the subject... and you might find a few links to things of interest on those pages. There are a couple of links that discuss nutritional treatment of seizures, but they are generally geared to adults.

I do believe my daughter's seizures responded to B6, although she was on Depakote at the same time. She was age 12 at the onset of her 'bigger seizures', but we realize now she was likely having absence seizures since about age 3-4. She sure seemed to improve more when we added the B6 on the recommendation of a friend here. Magnesium was also recommended. My daughter later tested positive to a condition called pyroluria, which was another confirmation of her being low in B6. She also had repeated low ALT/AST levels, another indicator of possible B6 deficiency. She weaned off of Depakote after three years. Her compliance with vitamins has been so-so (she is now a young adult), and so far the seizures have not returned. I do really believe that B6 deficiency was a factor in her seizures, although I do not have any conclusive proof of that.

I would not give more than 25-50mg of B6 to a young child, unless directed by a doctor. I'd also give it early in the day (because B vitamins can sometimes interfere with sleep)..maybe 25 mg in the morning to start, and possibly adding 25 mg in the afternoon a couple of weeks later. I'd give a multivitamin with it.

Also, there is a difference between B6 dependency conditions and B6 deficiency...discussed a little on one of those pages in The Gluten File. It could be that a child would in fact require a larger dose of B6 to be effective, but it is something that should be ideally balanced with other nutrients and prescribed and monitored by a doctor.

It is difficult to find doctors who want to even consider nutritional causes of seizures, or do testing for nutritional deficiencies. You could look for an environmental or integrative medicine doctor. We finally took my daughter to a DAN! (Defeat Autism Now) doctor, not because she had autism, but because they are known for doing nutritional testing and understand gluten sensitivity, which we were also dealing with.
DAN Doctor List (http://www.autismwebsite.com/ari-lists/danus.html)
Integrative Medicine Doctors (http://www.savvypatients.com/links.htm)


Source Naturals makes a 25mg. p5p B6 sublingual tablet... it has a strong peppermint flavor. I've had a little more trouble finding it recently, but if you google it, you will be able to find it somewhere. You might be able to find it in a health/nutrition store, but unlikely.

Kirkman Labs might also have something that would work for you, but it will be more expensive. They offer trial sizes sometimes, which can be helpful to see if your child will even take the product.
http://www.kirkmanlabs.com/products/vitamins/vitamins_index.html?shop=categories&sub=Vitamins

Here is a 50mg chewable tablet~ I've never tried it...just peeking around for options.
http://www.kirkmanlabs.com/products/vitamins/b6/B6W291_120.html

Hope this helps a little~

Cara

[mrsdoubtfyre]

So far this thread is very nice and informative! ;)

Many antiseizure drugs deplete folic acid which is a B vitamin.
Taking extra, or too much can negate or remove the seizure control.
This varies with each drug. So that if you are using an AED drug, you should
have your doctor run a blood folate level, and determine how much you can take,
without compromising the effectiveness of the medication, if you need it.

Many AEDs deplete other nutrients as well. If you post any meds I will look that up for you. For example, Depakote depletes l-carnitine as well as folic acid.
In the case of Depakote, serum carnitine can be measured as well.

[mpalmer118]

Thank you everyone! Wow, it is a lot to sort through. I am really hoping the neurologist will be open to at least discussing this, but even if he is not I want to at least explore the possibility.

Cara, Thank you for all the information. Kathy (Rathykay) has been giving me some information on going gluten-free also. I am still reading through all of that. :)

Mrs. D- Rachel is currently on 750ml of Keppra and 4 mg of Gabitril, both twice a day.

Should I hold off on giving any additional supplement until she is tested??

Thank you all again for all your input.

[jcc]

I was just rereading this...and wanted to add that nystagmus can possibly be a symptom of gluten sensitivity, as well. I have a study somewhere in The Gluten File, but you might find it more easily by just googling nystagmus gluten.

Cara