Re: MEDS MAKING THINGS WORSE--

[Guest guest]

,

I couldn't get the link you gave to work (it said no current query).

Could you tell me what exactly you used for your search?

I'm very interested because my 5 year-old daughter has also been

diagnosed LGS. In her case dilantin during the first hospitalization was

a nightmare (couldn't walk, talk, eat--I thought I'd lost her for

good). I had them stop it and she came back, but the depakote

(+zonegran) provided only a very short honeymoon and then 3 months of

daily seizures and tremors and cognitive disfunction and no quality of

life. I opted for the diet then, but it wasn't until I weaned the

depakote over a lonnnng, agonizing 10-month period, that things

improved (ditched the zonegran and short trials of lamictal and klonopin

long before).

Anyway, Claire's last short awake eeg in July was " almost normal " . She

shows no signs of cognitive regression and I cling to the hope that the

LGS diagnosis is incorrect (or, at least, that she is one who can beat

it). The research that says a child can go seizure free for as long as

year and then have the seizures return makes me feel like I'm holding a

ticking box that is either a plain old clock, or a time bomb. Know the

feeling? I, too, wonder about the role of the drugs in the diagnosis

and would like to see the articles you mentioned.

Thanks,

Barbara

sarahbri813@... wrote:

> My daughter is 7 and i believe the meds she is on are making things

> worse.

> One diagnosis she has gotten is LGS, and it is said to get

> progressively worse,

> but what if all the meds is what makes it worse?

> a had a definate experience with lamictal. As soon as she started

> it,

> she started getting myoclonic jerks, i took her off after one week,

> and the

> jerks stopped. She has started with the jerks again when she started

> dilantin in

> November. I kept her on dilantin, because of a status scare, but am

> now weaning

> her.

> There are some great studies and articles that have proven over and over

> again about meds making seizures worse especially LGS at Pub Med.

> Mostly tegretal

> and trileptal. Even dilantin.

> The site is:

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids>

> =9578007&dopt=Abstract

> You can click on the link for related articles and see a whole bunch.

> My daughter is on trileptal, and has gotten alot worse since she

> started, so

> im starting to wonder.

> Also i have heard seizures are a sign of the brain trying to heal itself.

> That is why alot of kids can grow out of them, but if there are kids

> that are

> really doped up, how can their brain even try?

> I wish i had the answeres i needed, and i wish there were definates in

> diagnosing the epilepsys.

> It sucks.

>

>

>

>

[Guest guest]

I dont know why its not working, but it will also work if you go to:

http://www.ncbi.nlm.nih.gov/entrez/queryd.fcgi

Then in the search bar type in:

3780607

Then you can click on to the related articles. I just tried it and it worked

for me. Hope you can get to it!

Good luck

sarah

[Guest guest]

I dont know why its not working, but it will also work if you go to:

http://www.ncbi.nlm.nih.gov/entrez/queryd.fcgi

Then in the search bar type in:

3780607

Then you can click on to the related articles. I just tried it and it worked

for me. Hope you can get to it!

Good luck

sarah