Re: B vitamin deficiency-valproic acid (very long)

[Guest guest]

I have read a lot on internet info from Pfeiffer. Pretty good

reading and they seem reputable. Wish I could take her. I don't

really have the finances for the out of pocket stuff though. Trying

to do the " alternative " stuff on my own the best I can.

The reason why I wondered about the loss of B vitamins is because I

have read in several places that how the meds work are not precisely

known, though I think there are ways that they do know it works.

I'm not arguing for, but just repeating what I read. Seeing as I do

this on my own, I don't want to ignore this idea and just start my

daughter on supps at will.

Also, what I know about B6 is that it has some function in regard to

insulin. Can't recall exactly how at the moment. Anyway, I think

in MY childrens health, insulin and glucose are some significant

issues causing many (but not all) of their symptoms.

I have cut and pasted a post I wrote to another list that kind of

explains my thinking and my children's history:

****************

Thanks for the interesting post. You are way over my head with the

info and I admit I'm struggling to comprehend it! My daughter is on

depakene. One of the ways it works is by blocking glutamines. I

have to put this in simpler language for my own benefit. LOL But,

from what I understand, the seizures are not a disorder, but a

symptom. When there is a build up of glutamates in the brain, the

neurons become so excited that there is a choice of massive neuronal

death and a seizure is a dramatic way to quickly shed this

excitatory buildup. So, a seizure is actually the body's protective

response, much like a fever is protective. We treat fevers even if

they are not the disease.

Anyway, from what I understand, glutamines (being the fuel, right?)

are suppressed by the depakene (valproic acid) in order to protect

it from glutamate toxicity. I think that is what I understand.

Now from reading your post...I have to struggle with this idea and

other things I know. I didn't know that glutamine was very similiar

to glucose so now I'm trying to tie in what this all means for my

girls.

My oldest daughter was diagnosed severe ADHD. My youngest is ASD

w/epilepsy. What I learned is that when the body/brain doesn't have

enough glucose it produces norepinephrine and is forced to run on

adrenaline. When I altered my family's diet to SCD, we saw great

improvement. I believe this largely has to do with the fact that

the foods we eat (and frequent meals as well) keeps the blood sugar

even. The diet we had before (standard american diet) made the blood

sugar spike and bottom out. This might explain a lot of behaviors

that I didn't understand when they were toddlers. About an hour or

two after my oldest daughter went to bed, she would have night

terrors. My youngest would have seizures about an hour or

two after bed. Though she did have seizures at other times. This

would coincide with eating food that would

cause the blood sugar to spike and then bottom out(forcing the brain

to look for a different source of energy). However, the

two girls responded in very different ways, it may have still been

essentially the same issue.

My oldest (ADHD) daughter no longer needs ADHD meds now that we have

this diet we're on (SCD). My youngest has made remarkable progress.

Their father used to have night terrors when he was a boy and also

had passed out a couple of times as a teen. I think this was all

due to blood sugar. His older brother was diagnosed with Type 1

diabetes at age 5.

It doesn't seem too uncoincidental.

So, I didn't realize glutamines were similiar to glucose. I am

trying to understand this and will have to go research it. Like,

does that mean if starved of glucose, the brain gets flooded with

glutamines for the waves of energy. Yet not being able to handle

the glutamate toxicity...goes into an seizure? And then there are

the types who run better on adrenaline (like myself and my oldest

daughter who are both super skinny and hyper) who escape this

effect? My ASD daughter not being the adrenaline type may have an

energy system that will tend to pump out glutamines instead of

norepinephrine (adrenaline)?

What do you think? You know much more than I do. Maybe you seem

something in this that I don't.

What I do know for sure is my oldest daughter has never been

better. As long as she doesn't get foods that make her blood sugar

rise and fall dramatically. My ASD daughter is doing radically

better...yet still has some abnormalities on her EEG. She has only

been on this diet for 6 months though so maybe there is much repair

to be done. Or...maybe the depakene is now messing with her energy

utilization now that it's still doing it's job blocking glutamines?

Thanks for your post.

Oh, I signed on with a different userID but I'm still Mindy

***************************************************

Interestingly, what I have further been reading is that IRON and

INSULIN potentiate eachother. If there is an imbalance in iron,

then insulin will be out of whack too.

From various sources I have read, in the U.S. we believe that if we

are anemic that we have a lack of iron. However, we only excrete 1

mg of iron a day. We eat fortified pastas, cereals, breads, etc. I

think what we lack is nutrients that help utilize and recycle the

iron we already have such as vitamin A, B12, etc.

CHildren with ASD are believed to have metal transport errors. Too

much free iron causes tons of oxidative damage. If a child already

has a metal transport defect, damage from environmental metals

(vaccines?), and then the mother takes iron loaded prenatal

vitamins, feeds iron fortified formulas, gives iron fortified

vitamin drops to the infant...there is a high liklihood of iron

overload. (Which also potentiates insulin!).

Iron is stored preferentially to the fetus. The pregant woman's

body goes to a lot of trouble to unload iron. An infant has its own

6 month supply of iron at birth.

Here is a wild looking website that explains it simply and in great

length. This is not the only place I've read this though. I've

read a lot on iron in other sources.

http://www.autismhelpforyou.com/Redefining%20The%20Role%20Of%

20Insulin.htm

I didn't mean for this to get so long, but wanted to put this out

there for everyone on the list to thumbs up or down. I'm not saying

this information is true for everyone, of course...but it really

makes sense in regards to what I know to be true for my kids.

Mindy

>

> Mindy, When meds like depakene are being taken the loss in B

Vitamins

> (as well as other things) is merely a side effect of the

medication -

> it is not the reason the medication works. You are smart to think

of

> supplementing for the vitamins and minerals that are depleted by

> AED's You are safe in using the B vitamins and magnesium as the

body

> will simply excrete excess amounts that it can not use.

>

> Have you thought of having a consultation regarding your daughter

> with The Pfeiffer Treatment Center? they specialize in the type of

> protocol you seem interested in using and they are very familiar

with

> working with children who take AED's as well. You can visit them

on

> the web for more information. Not sure but i think the website is

> www.hrip.org

>

> Good luck with your search for answers.

> M

[Guest guest]

You've done good research and have very valid ideas. My son has been

seizure free without meds on a modified version of the Atkins Diet

and I have to say my thought it is the glucose control that has

helped to accomplish this though the Neuro who is supervising the

diet would probably tell you it is the production of ketones that is

supressing the seizures. 6 of one a half dozen of the other I guess.

Pfeiffer does have a financial assistance program if you are serious.

However I will say another resource that is much more affordable is

Dianne Craft at www.dianecraft.org

If you are not already a member of the group epilepsyresearch

you might want to get a membership there. Lots of excellent

information and you will be able to get confirmation or answers to

the questions and points you have brought up here.

[Guest guest]

hi

I'm quite new to this group. My son has ASD and epilepsy and is on

valproic acid. The info that you have posted seems useful to me. Can

you pls share with me what kinds of foods we should avoid, such that

sugar levels do not spike and drop drastically?

Thanks

> >

> > Mindy, When meds like depakene are being taken the loss in B

> Vitamins

> > (as well as other things) is merely a side effect of the

> medication -

> > it is not the reason the medication works. You are smart to think

> of

> > supplementing for the vitamins and minerals that are depleted by

> > AED's You are safe in using the B vitamins and magnesium as the

> body

> > will simply excrete excess amounts that it can not use.

> >

> > Have you thought of having a consultation regarding your daughter

> > with The Pfeiffer Treatment Center? they specialize in the type

of

> > protocol you seem interested in using and they are very familiar

> with

> > working with children who take AED's as well. You can visit them

> on

> > the web for more information. Not sure but i think the website is

> > www.hrip.org

> >

> > Good luck with your search for answers.

> > M

[Guest guest]

Thanks for the info on the Pfeiffer financial help. I do not feel I

will be able to pursue it, but I thank you for sharing the

information. (Basically, unless everything was free(travel, hotel,

etc, I just can't do it). I'm okay with that, I'll just plug along

learning what I can. In a perfect world, would love to have this

and that test to get a good picture other than relying on my

observations of my daughter. Might make it a bit easier. LOL

My daughter is on SCD where there is really no limit (other than

being unreasonable) on carbs, just the types of carbs. I would

think since she is not in ketosis that the glucose control could be

a strong argument in her case. On the other hand, there is this

explanation:

I have been reading that the environment in the gut (too many bad

bugs vs. good) can change the way the body uses energy. That's in a

nutshell, not the big explanation I've read. Anyway, the idea being

that perhaps in addition to having level glucose, that the

correction of gut flora can cause the body to utilize energy the way

it was meant to.

So many this and that possibilities!

I do know that although she's not eating chocolate cakes, french

fries and doritos like she used to, she has regained much of her

health,cognition and strength in return. So, something good is at

work here.

In my next life, I'm asking for a complete set of instructions

before I go in. LOL

Mindy

>

> You've done good research and have very valid ideas. My son has

been

> seizure free without meds on a modified version of the Atkins Diet

> and I have to say my thought it is the glucose control that has

> helped to accomplish this though the Neuro who is supervising the

> diet would probably tell you it is the production of ketones that

is

> supressing the seizures. 6 of one a half dozen of the other I

guess.

>

> Pfeiffer does have a financial assistance program if you are

serious.

> However I will say another resource that is much more affordable

is

> Dianne Craft at www.dianecraft.org

>

> If you are not already a member of the group

epilepsyresearch

> you might want to get a membership there. Lots of excellent

> information and you will be able to get confirmation or answers to

> the questions and points you have brought up here.

>

>