Re: Has anybody heard of Vigabatrin?

[Guest guest]

I don't know anything about it but I would love to know more!

sara_weakland <juie0208@...> wrote:

I am a new member. I have a 21 year old son who has been epileptic

since he was 4. We have tried numerous medicines and he is now

taking Trileptal and Lamictal. Our local paper ran an article

Sunday regarding a 17 year old girl who had been having up to 50

seizures a day, had her frontal lobe and temperal lobes removed and

also had the VNS. She was so doped up she couldn't function. Her

mother heard about the drug Vigabatrin, which is only available in

Canada, and started her daughter on it in February. To this date,

she is seizure free, wide awake and learning like a sponge.

I was hoping somebody else has heard of this or tried this. I need

some feedback to go back to his Neurologist with, so hopefully I can

get a script.

[Guest guest]

i've never heard of it!! it sound intresting.last year alone from jan.15-june

11th2003 i had 700 seizures i know how your son feels i've had it since birth

and i'll be 46 in august.

sara_weakland <juie0208@...> wrote:I am a new member. I have a 21

year old son who has been epileptic

since he was 4. We have tried numerous medicines and he is now

taking Trileptal and Lamictal. Our local paper ran an article

Sunday regarding a 17 year old girl who had been having up to 50

seizures a day, had her frontal lobe and temperal lobes removed and

also had the VNS. She was so doped up she couldn't function. Her

mother heard about the drug Vigabatrin, which is only available in

Canada, and started her daughter on it in February. To this date,

she is seizure free, wide awake and learning like a sponge.

I was hoping somebody else has heard of this or tried this. I need

some feedback to go back to his Neurologist with, so hopefully I can

get a script.

[Guest guest]

I have heard of this drug, But I dont know too much about it...My

son has Lennox Gastuat syndrome and will have hundreds of seizures a

day, Hes on nitrazepam which I have to get from canada, It has been

increasingly hard to get, The BIG Pharma is putting so much pressure

on the government to stop importing drugs, Unfortunately for those

who dont have a choice. His medicine has been opened and examined by

customs, I would not encourage anyone to try and get medicine from

canada, I am looking for an alternative to his nitrazepam, But the

only thing close to it is also only available in canada! If the drug

companys are not going to make a fortune off a drug they wont market

it! They would rather market Viagra then a seizure medicine that has

saved lives! Just another reason I hate Pharma!

I am a new member. I have a

21 year old son who has been epileptic

> since he was 4. We have tried numerous medicines and he is now

> taking Trileptal and Lamictal. Our local paper ran an article

> Sunday regarding a 17 year old girl who had been having up to 50

> seizures a day, had her frontal lobe and temperal lobes removed

and

> also had the VNS. She was so doped up she couldn't function. Her

> mother heard about the drug Vigabatrin, which is only available in

> Canada, and started her daughter on it in February. To this date,

> she is seizure free, wide awake and learning like a sponge.

>

> I was hoping somebody else has heard of this or tried this. I

need

> some feedback to go back to his Neurologist with, so hopefully I

can

> get a script.

>

>

>

>

[Guest guest]

http://www.healthandage.com/Home/gid6=4407

Vigabatrin. Vigabatrin (Sabril) is a chemical called gamma-vinylGABA.

It was designed to increase the brain levels of gamma aminobutyric

acid (GABA), the enzyme that inhibits seizure activity. It has serious

side effects, however, and is generally prescribed in the US in only

certain cases, such as in low doses for patients with Lennox-Gastaut

Syndrome. Overseas it is also used for partial seizures and as first

line therapy in children with infantile spasms (West syndrome).

Between 10% and 30% of people on long-term treatment have developed

irreversible visual disturbances, including reductions in acuity and

color vision. Men are at higher risk for this side effect than are

women. Further studies are needed to determine the extent and severity

of this complication, particularly in children. There is a slight risk

for depression or psychosis when vigabatrin is used as add-on therapy,

and particularly if the drug is administered too quickly. These risks

are far lower if the drug is used as sole therapy.

I am a new member. I have a

> 21 year old son who has been epileptic

> > since he was 4. We have tried numerous medicines and he is now

> > taking Trileptal and Lamictal. Our local paper ran an article

> > Sunday regarding a 17 year old girl who had been having up to 50

> > seizures a day, had her frontal lobe and temperal lobes removed

> and

> > also had the VNS. She was so doped up she couldn't function. Her

> > mother heard about the drug Vigabatrin, which is only available in

> > Canada, and started her daughter on it in February. To this date,

> > she is seizure free, wide awake and learning like a sponge.

> >

> > I was hoping somebody else has heard of this or tried this. I

> need

> > some feedback to go back to his Neurologist with, so hopefully I

> can

> > get a script.

> >

> >

> >

> >

[Guest guest]

This was one of the first drugs that my daughter was put on. It did not

suit her as it severely affected her mood, caused weight gain, and didn't

stop her seizures. There is also a need to have regular vision checks

whilst on this medication.

Jill

At 04:27 AM 27/04/2004, you wrote:

>I am a new member. I have a 21 year old son who has been epileptic

>since he was 4. We have tried numerous medicines and he is now

>taking Trileptal and Lamictal. Our local paper ran an article

>Sunday regarding a 17 year old girl who had been having up to 50

>seizures a day, had her frontal lobe and temperal lobes removed and

>also had the VNS. She was so doped up she couldn't function. Her

>mother heard about the drug Vigabatrin, which is only available in

>Canada, and started her daughter on it in February. To this date,

>she is seizure free, wide awake and learning like a sponge.

>

>I was hoping somebody else has heard of this or tried this. I need

>some feedback to go back to his Neurologist with, so hopefully I can

>get a script.

>

>

>

>

>