Re: Lamictal Question

[Guest guest]

,

I'm going to echo Bill's thought that if Lamictal had been doing the

trick for Langan, you probably wouldn't be trying the diet.

Medications are known to interfere with the diet in many cases. From

what I've learned, Depakote, Lamictal and Topamax seem to be the

biggest culprits. We came off Depakote cold turkey at the start of

the diet. Then weaned off Felbatol after 3 weeks on the diet. We

did have complete seizure control from the beginning, but I think

that maybe that isn't altogether necessary in order to start weaning

drugs. Our keto team is very agressive about getting off the drugs

and letting the diet do what it will do. You've had a very positive

experience with seizure control, although not perfect. I honestly

believe the only way you will ever know if the diet will eventually

control Langan's seizures completely is to get rid of the drugs and

work with the diet. The drugs are BIG variables and if they are on

board, you really will never know if they are goofing you up or not.

You can always go back on Lamictal or something else later on.

It is normal to have lower ketones in the morning and then see them

rise during the day. Kids use up the fuel from their dinner and

are " coasting " in the morning when they wake up. If Langan were to

skip breakfast and maybe lunch, you would see her ketones rise

because she would begin to burn stored body fat or breakdown muscle

for fuel. Since you don't want her to burn body fat or muscle, you

feed her breakfast and then she has fuel again and her ketones rise.

She refuels throughout the day but then has the overnight again. If

she's not having seizures in the morning, the lower ketone level is

probably ok, especially if it rises later in the day. Increasing the

ratio from 3.4 to 3.6 is a very small jump. I'm thinking it won't

make that much difference either way, but some kids need very tight

limits, so it's worth a try. It's good to make one change at a time

so that you know if it helped or not. I would wean from Keppra and

wait until all the residual drug is out of her system. Then, based

on ketone levels and seizure frequency, I would adjust the diet.

Just my 2cents... hope your appointment with the neuro goes well

tomorrow.

Cammie

> Hello all. I have been reviewing the archives and have seen so

many

> posts on lamictal weaning. It is a scary proposition!!

>

> I thought we would wait a while before starting to wean, but now I

> am wondering if the lamictal is part of the problem. Langan is

only

> on a small dose of lamictal (75 mg a day, at 25mg 3X). We went 16

> days seizure free when starting the diet but started having

seizures

> after that and have had 4 (2 the first night, then one 3 1/2 days

> later and then one 2 1/2 days later). This made me think that we

> would wait longer for the weaning to begin until I noticed

something

> very strange- each of these seizures has occurred within 1 1/2 to 2

> hours AFTER a lamictal dose. That, to me, raises some red flags.

> Am I just dreaming?

>

> We meet with our non-keto neuro today and I want to talk to him

> about this. He is the one who put Langan on lamictal and I know

> that he thinks it is the drug of the century. He did agree to

lower

> her to this dose (which is close to half her " therapeutic dose " )

> several months ago after much insisting by me. We did a VEEG in

> July and Langan was off all medicines and doing so well and with no

> seizures. They couldn't get a seizure on the VEEG, unhooked her,

> gave her 50mg of lamictal that morning, and she had a seizure that

> night. At the time, I thought it was dumb luck. Now I am

wondering

> if the lamictal could be part of the problem. It is the only drug

> Langan is on and we are scared to death to fly without a net but at

> the same time what happens if we never get seizure control on the

> diet b/c we stay on the lamictal waiting for seizure control?

> Should I insist on a slow wean now? Should I wait? Help!!! = )

>

> , mom to Langan