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Re: Lamictal

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Hi. I'm eavesdropping from the atkins board and noticed your comment

about weaning from Lamictal. We've been on the atkins diet 2 months

now with major seizure reduction (not seizure-free), but our 6 year

old is still on 100 mg of Lamictal, twice a day. How do the doctors

usually do the weaning, and what kind of danger withdrawal symptoms

do we look for?

Thank you so much!

Tammy

> Hi Viola,

> A decrease in seizures means Caden is 'responder' of some sort,

so that is the good news...some kids see no improvement whatsever,

sometimes even a seizure increase, so def a reason to be optimistic.

> The bad news (well not really bad, more frustrating than

anything...) is that yes, medications can mean the difference between

seizure control and not - and basically the only way to find out if

weaning the meds is the answer, is to go ahead and do it and wait for

the response.

> This can take a long time, er, still not med free after 3 yrs on

keto here with , but - don't take his scenario as a benchmark,

lots of other road bumps interfered with his control in that time.

His main problem included the benzodiazepine medications he was

plagued with for the first 2 yrs on the diet (and pre diet as well).

> In answer to your question - have others started out that way to

go on to become seizure free? Def yes, more so than those who are

seizure free from the word go.

> Some on here have taken months, cripes - even yrs to get there,

and a big percentage of those cases have involved drug complications.

It is very hard to finetune the diet aspect when meds are on board,

trust me on that.....and v difficult to know what to do first when

control is still elusive.

> If ketones are in a good place (like not too low or too high) and

weight is stable (not too big a decrease or increase), then meds

would prob be the first place to start.

> We didn't get the go ahead to wean with , we did it

ourselves based on advice and experiences on this list. He had

daytime control early on (about 3 days after diet intiation), still

sleep sizures in the early am, but we were happy enough with that at

the time, until about 2 weeks later when the seizures came back in

the day bigtime - turns out the ketosis/AED combo had tipped him into

toxicity and in the end a rapid reduction (lamictal in his case) in

hospital was the way we got control back again. A Jnr Dr at our

hospital agreed to take a punt on our theory and 'allow' us to

reduce, and 5 days afterwards (following a short hit of diastat to

break the withdrawal cycle) 'came back' to us.

> Every case is different as to how they will react with meds on

the diet, and how they respond to weaning etc, but med

weaning/rationalisation is deifnitely high on my list as fine-tuning

measure. If there are any signs at all that the dep is interfering,

like not attaining stable ketones, seizures more prevalent as the med

doses peak, anything like that, I personally would try reducing

sooner rather than later. Perhaps telling your Drs that there are

children on the diet you know of who didn't get control till after

meds were weaned, or even reduced, may help him support you more in

attempting it?

>

>

>

> ----- Original Message -----

> From: vihairaffair2000

>

>

> Hi my son Caden has been on the Keto diet for about a month

now.We

> have seen some decrease in the seizures, but still having some

> everyday, i hoping its his meds that are interfering with the

diet ,

> he is on Depakote, ive heard that this is not a good drug with

the

> diet. Hope his doctor will try to take him off soon to see if

there

> is a improvment.If you dont see the seizures stop pretty

quickly, is

> this the best they are going to get , iknow we have to do some

fine

> tuning still.Was wondering the longer you work with diet the

> seizures will get better or you have abetter chance of them

> stopping, i know its early in but you just worrie so bad that

this

> is all your going to get.Has anybody started out this way and

end up

> seizure free after awhile. iknow iam asking alot of questions,

but

> iam just so new to this diet you just worrie about

everything.

> Caden,s mom Viola, Thanks.

>

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