Re: Re: Depakene- - Colton

[Guest guest]

We are weaning depakote (depakene/epilim/valproate - whatever brand name, or

form it is in, it works along the same lines, the carb content is a sep issue

again) at the mo, have had many ups and downs of the dosage over the past 3 yrs

that has been on the diet, with his history showing that for him, the

less depakote on board, the stronger his ketones get.

So in his case I think it is the lessening of the apparent competition between

the dep and the diet (both work along similar fatty acid pathways) that causes

this ketone increase.

I think the main metabolic competition that occurs in the body is for usage of

available l-carnitine. The depakote/diet combo can cause a carnitine deficiency,

and (in 's case, again, doesn't always apply...) as the dep level goes

down, the carn levels go up - meaning that there is more carnitine available in

the body to process/metabolise the large amounts of caloric fat, resulting in

higher ketones.

Having said that, dep is an acid inducing med (not to the same degree as the

likes of topomax, zonegran or diamox tho) and there are reports that it can

therefore 'enhance' the diet and it's seizure control benefits. So as with many

other things to do with epilepsy and/or the diet, what is the case for one, is

not always the same for another....

The carnitine issue is one that has def caused problems for some kiddies on

the combo though, and this is the reason that the likes of Dr De Vivo (metabolic

neurologist) recommends they are not used together - if so, it should be in

conjunction with an l-carnitine supplement to ensure a severe deficiency doesn't

result. However...supplementing with carnitine can bring it's own set of

problems, in some rare cases it can cause a seizure increase, so that is another

one that has to be watched closely.

Keppra is one of the few AEDs not metabolised thru the liver, and for this

reason, is one of the few meds that according to a lot papers can be used

'safely', metabolically at least, with the diet. The liver is fairly taxed on

keto from processing large amounts of fat, so any med that is not metabolised in

the same manner is one that doesn't put added stress on it.

Carbitrol - not had any experience with this one, this is in the tergretol

family? If so, tegretol was a nasty for fullstop, so is one I always

shudder about when I hear of it's use, but the problems we had with it stemmed

mainly from it aggravating seizures that were primarily generalised. For focal

seizures, it doesn't seem to have the same effect, but as doesn't/didn't

have those anyway, it is one that should never have been prescibed for him in

the first place. Plus we found out afterwards that it was one specifically

mentioned as aggravating seizures in his syndrome (MAE)

As far as which one should be weaned first - well 3 meds together (esp in

conjunction with keto) always causes more of a problem than two or one, so he

will be better off I'm sure by taking at least one away, whichever you choose.

Perhaps the one you feel could be weaned the quickest with the least chance of

withdrawal seizures, or one that you suspect may contribute to any form of

toxicity or seizures that he may still have (or is he seizure free on the diet?)

As far as the risk of a carnitine deficiency goes with the dep/diet combo, in

's case this didn't come about till he had been on them together for

approx 9-12 mths, so you may still be ok as far as that side of things goes for

a while yet. Again though, every kiddie is different, and it might pay to get a

carnitine blood level done to see if this is an issue that does have to be

addressed, either by weaning the depakene (whihc is why we are weaning it,

's carnitine levels have dropped down very low), or by trialling a

carnitine supplement,

----- Original Message -----

From: hemlockridgePA@...

Hello,

So much information out here... This group is wonderful! For example, I

have

never cooked with pork rinds in my life, but will look for them so we can

try

keto chicken nuggets......

Anyhow, I've been reading the comments about Depakene, as our son was

switched to Depakene from Depakote as we initiated his diet in June, 04.

Our neuro

said that Depakote had too many carbs and that Depakene was carb free.

I've been reading so many comments that Depakote/Depakene interfere with the

diet's ability to work anyhow, but now I'm really confused.... We had

discussed a " wean " schedule for Colton's meds and Depakene was the last one

we were

going to address. I'm thinking I should discuss this with our neuro and

hopefully work to reduce/remove the depakene before we address the others

(carbitrol

and keppra). Any thoughts?

~, Colton's mom, on the diet since June, 04.