Re: Re: Depakote withdrawl-La Verna

[Guest guest]

Hi La Verna - a quick jump in

We are one of those that most definitely saw ketones go up after weaning

depakote - but that was a cold turkey experimental type wean, may have been

different doing it all at once, even though was only on a 300 mg

total dose.

We had started carnitine the week before as well, and both things

together - weaning the depakote and adding the carnitine led to overkill,

and saw 's bhb go sky high, (it had already started inching up over

5.0 before the carnitine was at a theraputic level, I should have stopped

the carn there and then .....) which I think then upped his med levels.

That was how the Nov/Dec seizure fest began for us. Ketones too high, and

toxic on his remaining AED which was diaz.

So we kind of got the desired result, which back then was getting waking

ketones higher, but the overall result was ketones higher at all times of

the day, including when they had already been too high by late aft/evening.

So in hindsight, I wish I had lowered his ratio beforehand (or increased

cals in preparation) and never started the carnitine, but as this doesn't

seem to happen to all kiddies, I guess I wasn't quite prepared enough for

the dramatic ketone response.

The increased ketones from the dep wean may have been either from

increased metabolism from not having that drug on board, (it is one that

makes D quite sluggish) or the taking away of that 'competing mechanism'

that depakote and ketosis have been reported to have. (Carolyn's daughter

Jess is one who had to wean depakote to get desired ketone levels and full

control)

He is back on it now, not happy about it, but everything was put back in

hosp in case the wean itself had been the seizure culprit - (I don't think

so Tim....he had steadily improved initially as soon as it was ditched, I

pick the benzo going toxic as a result instead....), carnitine was stopped

immediately, diaz was ditched, and the topomax was eventually added.

Itching to reduce the dep again, but not to get waking higher ketones this

time - the topomax has somehow (?) taken care of that one for us, more to

get rid of what I consider a spare wheel med, but I have just never seemed

to manage to get the timing for weaning it right

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

> We are weaning the second last capsule of depakote and going very slow.

I have noticed this past week that her ketones have been much higher than

usual and nothing has changed in her diet....did you see this with weaning

depakote?

[Guest guest]

Yikes, if high enough to vomit, then yes, looks like you had no choice.

Keep a close eye on her weight in case it is a calorie issue from buring

thru cals faster after the dep reductions though...could be either or, less

dep meaning easier ketone production, or faster metabolism from being on

less of the med, or, well, both??

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

> Hi ,

> Thanks for 'jumping in'.......yesterday her ketones were high again and

in the afternoon she vomited.......sooooo decided that I better do a drop of

the ratio NOW! Dropped it to 2.8-1 today which basically only means less

fat and a bit more protein..easy enough to do. I gave her a drink of keto

orange juice(kooler) at bedtime(has minimal carbs.) and it seemed enough to

keep her ketones manageable until this morning. She actually slept very

good...I had 'real' orange juice handy in case we needed to give it to

her....I've never had to do that and so I'm glad I didn't need to. so we'll

monitor her this week and see where this goes. I wouldn't be surprized if we

have to drop it a bit more. We've never gone below 3.1-1.0 so this is new

territory....yikes!

> LaVerna