lamictal/lamotrigine survey

[Guest guest]

Our son started taking Lamictal 1 year ago. It has been wonderful for him.

He has virtually no side affects from it. He is 4 and tkes 175 mg a day. We

crept it up very slowly about 7.5 mg evry 4 days. When we got it up to 75

mg, that was when ewe saw a huge change in his alertness and mood. He now

acts like every other wild 4 yr. old boy! tina

[Guest guest]

Hi everyone

Yet another survey but I'm really curious. How many of you have had a positive

experience with lamictal/lamotrigine? And would recommend it?

Connie ('s mom)

[Guest guest]

Nope. Especially not for any suspected syndrome with a large myoclonic

component.

Hill

lamictal/lamotrigine survey

> Hi everyone

>

> Yet another survey but I'm really curious. How many of you have had a

positive experience with lamictal/lamotrigine? And would recommend it?

>

> Connie ('s mom)

[Guest guest]

Connie,

To base an opinion about lamictal on recommendations of this group

would be a bad mistake -- because of something called selection

bias. Most of the people here have had bad experiences with just

about everything. If you were to find a forum of " people on

lamictal " you would probably get a very different view.

My wife and I argued about lamictal. She was scared to death of the

potentially fatal rash. We tried it. It made our daughter worse,

but she has myoclonic epilepsy, which is one type that tends to be

made made worse by lamictal. (Your survey should include type of

seizures being treated and underlying disorders, if any.)

As you probably know, lamictal is a potentially dangerous drug in

young kids. If other drugs haven't worked it probably won't either.

But on the other hand " it could be THE ONE. " That's the hard part.

There's no crystal ball. It takes a LONG TIME to see if it works.

If you have other drugs on the list that take less time to try, I'd

say go with them first.

If you've tried a couple of other drugs already, I'd definitely try

the diet first. Without knowing 's story, I would guess it

probably has a higher chance of working than lamictal unless your

neuro has some specific reason why it might be the magic bullet for

your son's seizures.

Neil (Lisette's dad)

> Hi everyone

>

> Yet another survey but I'm really curious. How many of you have had

a positive experience with lamictal/lamotrigine? And would recommend

it?

>

> Connie ('s mom)

>

>

>

[Guest guest]

Hi!

We've never tried lamictal, but my husband had a good suggestion--if you go

the the Epilepsy in Young Children website (Just do a search for it in

google--it will come right up, I don't know website off hand), you can look

up " by therapies " and click on " Lamictal/Lamotrigine " and it will list all

the kids who've tried it, and whether it was positive, negative, or neutral

(or unknown.) Then you can click on any of the kids you'd want to read the

specifics of. It is a very helpful site...well organized and all written by

parents (you can list your kid...Molly's on there, but I haven't updated in a

while.) There are about 1500 kids now listed I think, it is a very good

resource.

[Guest guest]

Not sure if this is the site you are looking for or if it is ok to post

it. Someone give me a slap on the hand if this isnt allowed please

http://www.geocities.com/HotSprings/1000/

HTH

Jenn

melissasokulski@... wrote:

> Hi!

> We've never tried lamictal, but my husband had a good suggestion--if

> you go

> the the Epilepsy in Young Children website (Just do a search for it in

>

> google--it will come right up, I don't know website off hand), you can

> look

> up " by therapies " and click on " Lamictal/Lamotrigine " and it will list

> all

> the kids who've tried it, and whether it was positive, negative, or

> neutral

> (or unknown.)

[Guest guest]

Hi Connie.

We tried Lamictal briefly with my son, who has myoclonic seizures. We didn't

get an increase in seizures, but he did develop a tic (clearing his throat

constantly to the point of madness, for him and for us), which was what

convinced our neuro to drop it. I also found that as we upped the dose my

son was getting way to aggressive. He's normally a very passive child. Too

passive, so when we first started the drug he was very pleasantly

extroverted. As we upped the dose he got very nasty, in-your-face, and

seemed out of control of his physical strength. It was pretty awful. So at

least that's one more drug that's off our neuros " wish list " .

,

Joe's mom

[Guest guest]

Connie,

Lamictal made have myoclonics. As the dose went up, we started seeing

jerking and twitching. Our previous neuro did not believe us (thought I was

a neurotic mom!). Our current one told us that Lamictal can increase

myoclonics ( probably had " drop " myoclonics, but not the repetitive,

jerking, twitching kind). He upped the dose enough so we'd know for sure one

way or the other. Sure enough we started seeing TONS of myoclonics (50-70

episodes per day, lasting 30-45 sec each). As soon as we were off the drug,

myoclonics disappeared. On the plus side, we didn't see any of the horrible

behavioral side effects that we've seen with some of the other meds. And I

think it did help with other seizure types.

ashley

----------

To: <ketogenic >

Subject: lamictal/lamotrigine survey

Date: Sat, Jun 22, 2002, 2:58 PM

Hi everyone

Yet another survey but I'm really curious. How many of you have had a

positive experience with lamictal/lamotrigine? And would recommend it?

Connie ('s mom)

[Guest guest]

All I can say regarding lamictal is that when Karley could not be controlled

by anything else during a 4 day hospital stay finally a new neuro that we had

not seen suggested lamictal in conjunction with depakote and it provided the

best control we had seen and she's been on the combo for 5 years. We have

seen some behavioral problems and she still has tonic clonics at night on

occassion and some clusters ev. 3 mos or so. Did the lamictal cause any of

these problems or is it a result of her condition (tuberous sclerosis)? Who

knows. We are hoping the diet will allow us to go off the meds so we can

see.

[Guest guest]

Wow -- I'd forgotten about the throat clearing thing

until I read this. ARGH -- that was so annoying. .

.. did it all the time and a nurse actually

mentioned to us that it was a side effect of Lamictal

and that it was a tic. Scary stuff -- we had the

agression, too.--D

--- sjlit@... wrote:

We didn't

> get an increase in seizures, but he did develop a

> tic (clearing his throat

> constantly to the point of madness, for him and for

> us), which was what

> convinced our neuro to drop it. I also found that

> as we upped the dose my

> son was getting way to aggressive.

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