Re: Help--need info on Lamictal

[Guest guest]

Hi ,

I didn't notice much change in Gillian going on lamictal untill we started

weaning then I realize how flat she'd become. We couldn't get her to smile

or respond to us in any way. Thinking back thats when she was most

miserable. It didn't help the siezures. Some days she'd have big clusters

of siezures and cry all day. However, I remember thinking in the beginning

how nice it was that it didn't make her so drowsy as the other AED's.

Anyways, coming off has been really crappy up until we introduced large

dose of B6 daily now she's breezing through pretty well. Also I think her

ketones are climbing with each decrease.

That's our experience,

TTFN

Liz

Help--need info on Lamictal

> The diet is not working and the doctor has said that our next step is to

try

> Lamictal. I know I've read many horror stories about Lamictal and it's

> weaning, but I didn't think they applied to me so I didn't save them.

Could

> anyone out there who has any experiences (both good and bad) with it,

please

> post. You can email me privately if you want, or put it on the group.

>

> Thanks a bunch.

>

>

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[Guest guest]

At 05:36 PM 7/9/01 -0400, you wrote:

>The diet is not working and the doctor has said that our next step is to try

>Lamictal.

My daughter was put on Lamictal for about 2.5 months when she was 6 months

old in addition to clonazepam and Sabril. I didn't notice any big changes

in seizure frequency, but did notice that she suddenly got very spastic and

fussy. She's developmentally like a newborn (even today at 30 months

old). We met with a nutritional biochemist about that time and implemented

a feeding regimen that was similar to the diet. She went 1 week seizure

free but was spastic and unhappy the whole time. The neuro. credited it to

the Lamictal and said we could just wean it cold turkey. (I didn't know

about tapering off a drug.) She was a MOST unhappy girl after that and

seized almost all night long for the next 2 months...not fun when you're 8

months pregnant.) Our neuro. said you can't go into status with infantile

spasms so we just toughed it out...didn't know anything about diastat. We

were desperate enough after that to try prednisone which is another

story. However, she has gotten increasingly spastic since using

Lamictal. I don't know if that was a side effect for her, but I've seen

lots of improvement in that area since starting the KGD. I know the diet

doesn't work for everyone but I'd watch your child closely while on

Lamictal. I haven't heard any positive permanent results yet.

Hope you find the what works for you and you child.

mom to Esther (Aicardi syndrome)

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