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Re: carnitine

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melissasokulski@... wrote:

> Hello,

> Someone here had a question about carnitine possibly increasing

> seizures...I'm sorry I did not save the email, but I wanted to

> comment...

>

That was me :)

> I was just reading about carnitine yesterday, and thinking about

> possibly

> supplementing it in Molly's diet...the neuro mentioned her bloodwork

> was a

> little low in it, and she wants to watch it and may add " carnitore " .

> I was reading " The Encyclopedia of Natural Medicine " by

> Murray, ND,

> about it...he mentioned there is L-carnitine, D-carnitine, and

> D,L-carnitine

> available, and the D and D,L can make symptoms of carnitine deficiency

> WORSE.

> Did you happen to notice which form you were giving?

>

Actually we were using the prescription form which is L-carnitine, I

know they say to stay away from the kinds you can get over the counter.

> Also, I'll be interested to hear people's replies about supplementing

> carnitine, did it increase seizures for anyone else's child? Did it

> decrease

> anyone's? Did it help other things?

The majority of people find it helpful on the diet. In theory it should

be because it helps metabolize fat. I have been on the list four years

and am only aware of two other parents who felt it might have been

harmful. But thought I would ask, never know when someone new might

have something new " _

, 's mom

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We've always used L-carnitine with Depakote. 750/day, minimum. Once, I ran

out for a few days and saw an immediate difference. Much more spacey,

lethargic, less engaged. Never let that happen again! I do not see that it

affects seizures at all. I give my son 250 twice a day, and a 330 Carnitor

before bed with his three Depakote capsules. For him, it makes a huge

difference in keeping him alert and present. Without it, the ammonia level

in his liver rises much too high. Jane

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Carnitor caused AWFUL diarrhea for Katera. She was never tested.... they just

prescribed it thinking all Keto kids probably need it. After two months of that

I said NO.... unless they wanted to test her levels, which they never did.

Patti

Re: carnitine

-- I know of at least one child on this list

(Sevi -- if you're reading, Nan!) whose seizures got

worse on carnitine. I remember Nan saying she'd

actually seen this listed as a possibility on the

Sigma Tau carnitine website. If she's low on it,

though -- you may want to try it. I think there's

also another child (Leah, maybe?) who didn't get

control until the carnitine was added because she

needed it to metabolize the fat.--D

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