Re: Re: Lamictal-Tammy

[Guest guest]

Hi Tammy,

That is a fairly large dose isn't it, and is actually where had got to

as well with that med, he was nearly 5 when we started weaning it. It was far

too much for him to cope with, this I know, but he was on 2 other meds

(including depakote which potentiated the lamictal) at the same time, so

probably a bit different.

We took more off the top than we normally would have after he started the diet

because of the toxicity factor, but from memory I think it was 2 separate

reductions within 7 days (one of 50 and one of 25) to take him down to 125 mgs -

but that was in a hospital setting, so a lot different to what we would have

done at home.

We did the rest of the wean over the whole of the next year, actually it took

18 mths I think? That long wean was because he was on the 2 other meds as well

though, and we had to tweak one, then go back and reduce another and so on.

We did a couple of 25 mg reductions after we got home over the next few mths,

then slowed it down to bring it in line with 10% decremental decreases, (usually

once every 2-3 weeks) which was fairly do-able because of the 5 mg pills

available.

He had withdrawal fallout with just about every decrease, the large one in

hospital was kinda hard to tell because he was already having a lot of seizures

again at that point, but once we got daytime control back, we were able to

easily tell what were withdrawal seizures.

They used to come like clockwork actually, one or two drop attacks on either

day 3, 4 or 5 following each reduction - always between about 3 and 5 pm. Not

sure why this timing was in the day, it happened at that time whether we had

taken off the morn or evening dose, which I aways found a bit strange.

Once down to the lower doses (say below 50 mg total) the fallout used to last

a bit longer, sometimes some 'off' behaviour that was prob sub clinical activity

lasting up to about 2 weeks at a time.

The lamictal with was always a bit dicey, we are pretty sure it was one

that had aggravated his myoclonic seizures, he has a predominantly myoclonic

epilepsy syndrome (MAE) and when used in these types of syndromes, it can def

have that effect. Having said that, it is one that has been a successful med for

some other MAE children that I know of, so obviously this is not always the

case.

It is because of the myo aspect that we chose the lamictal to reduce first out

of the 3 meds he was on, as the seizures that returned in the day after his

initial seizure free response were all myoclonic, either myoclonic astatic drops

or myo twitching of extremities. We are pretty sure that the ketosis (protein

binding mechanism of many meds is often altered) boosted the lamictal up and

induced the myos that had initially been controlled on the diet.

He had other effects during reducing as well, like a lot of the side effects

that came with lamictal with him seemed to be enhanced, especially sleep and

behavioural disturbances.

If you are in no real hurry because of toxicity like we were, I think if it

were me I would maybe do 25 mg reductions perhaps every 2 weeks until you are

down to mebbe 125 mgs, then slow it down to 12.5 mg (half a 25 mg pill)

reductions to try and keep it to 10% decremental weaning if possible, depending

on how he goes of course. Then use the 5 mg pills to do 10 mg, 5 g and 2.5 mg

reductions and so on till it has all gone.

Our Neuro is one who doesn't usually do decremental weaning, he usually does

step wise, like he would have said reduce by 25 mgs every couple of weeks till

it was all gone, but we have found this method doesn't work with , as the

percentage reduction actually increases the lower down you go, so more of a

shock to the system I think.

Good luck, let me know if I can help with anything else,

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

From: tkkoski

,

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