question

November 8, 1999

wow!!! felbatol is one of the last resort drugs that doctors talk about

becasue of the side effects. liver damage and aplastic anemia. how long have

you been on it. they are talking about trying it on my son and would like to

learn more

julie

November 8, 1999

In a message dated 11/08/1999 4:12:14 PM Eastern Standard Time,

Topmom7698@... writes:

<< From: Topmom7698@...

wow!!! felbatol is one of the last resort drugs that doctors talk about

becasue of the side effects. liver damage and aplastic anemia. how long have

you been on it. they are talking about trying it on my son and would like to

learn more

julie >>

Be real cautious with Felbatol.. My son was on it a few years ago. Evidently

the aplastic anemia hits fast.

November 8, 1999

June,

I was diagnosed with epilepsy (absence - petit mal) at age 10. They put me

on Depakote which I was on until the age of 17. I had my first Grand Mal at

14. My biggest problem with Depakote was that it made me sluggish, tired

and I had some weight gain. None of these were severe enough to greatly

interfere with my daily life, but as a teenage girl, I despised the weight

gain. When I was 17 I was changed to Felbatol. My Dr. was one of the

" research Dr.'s " on Felbatol. I absolutely loved it! I lost all of the

weight I had gained, was not tired all of the time and to be honest, I don't

think I had ANY side effects with it. About 15 months ago, (I just turned

23) I was having problems controlling my seizures. This could have been for

a number of reasons, I had recently lost my mother, I started a new job, I

was engaged to be married etc. This continued for about a year. When I say

I was having trouble controlling them I mean 1 every 2 months or so. They

upped my dosages a few times, then finally put me on dual therapy, 1200mg

Felbatol and 1 ½ tablets Lamictal (I have no idea how much that is - I

should) in the morning, 1200mg Felbatol in the afternoon and 900 mg

Felbatol, 1 ½ tablets Lamictal at night. I feel great. I don't know if I

feel better because the Lamictal eased my mind and I wasn't constantly

worried that I would seize, or if it just gave me more " pep " . Either way, I

am happy with my meds for now. Being newly married we are planning children

in the future - 5 years or so. Once we get closer I'll look at dropping one

of the two or changing to something else, who knows what they will have in

the way of treatments by then. I don't know much about Tegratol of

Dilantin, but I've heard that the side effects from the two tend to be more

severe than with many of the other treatments - but then again, I'm no Dr.

I hope you find the answers and piece of mind that your looking for.

Best of luck,

Amy Caruso

[ ] question

From: june najdek <jn516@...>

I joined this list because I would like those who are on

meds for

seizure control, to give me their input on their experiences

with

different meds.

My thirteen year old grandson was diagnosed @ 8 years of

age, with

complex partial seizures. In the first couple of months he

was given

several different meds for seizure control. The first two

had terrible

side effects. Tegratol (sp?) changed him into an 8 year old

who seemed

to be possessed. It was a frightening experience. Next was

depakote

which was not much better and also made him violently sick

to his

stomach. The last med, Dilantin (sp?) is the one he has been

on and

remains on.

I've seen such changes in him since he started on meds.

Prior to the

meds, he was a very spontaneous child, who talked non stop,

and learned

at a rapid rate. He loved to read books and would sit for

hours doing

so.

Once the meds started, it seemed like he was in a fog much

of the time,

the spontaniety gone. So much of the time, it seems like he

is in

another world. He has noticed this and has commented to me

that his

memory is not sharp like it used to be.

He also has developed major problems with school and is

currently in a

dangerous situation. He absolutely refuses to go to school.

He is a big

boy for his age (I think he is starting puberty) and his

mother no

longer can physically force him to go. His parents, along

with him, have

had to see a state probation officer because of this. They

are trying to

get him into a special program, which involves up to eight

weeks of

intense therapy along with school work.

I feel that at least part of this situation is caused by

personality

changes from the meds. I realize that while the meds are

probably not

the entire cause of the problem, they do play a significant

part.

I would really appreciate feedback from all of you about

this. I'm sorry

this is so long, however I am sick over this whole

situation. Thank you.

--

June

" Do little things with great love. " Mother

mailto:jn516@...

http://www.geocities.com/Wellesley/1204

http://www.geocities.com/heartland/meadows/6250

http://www.geocities.com/athens/forum/7306

---------------------------

November 9, 1999

In a message dated 11/09/1999 7:58:45 PM Eastern Standard Time,

poohbear@... writes:

<<

Be prepared for a lot of weight loss on Felbatol. There is now a urine test

(sponsored by the drug company that makes Felbatol) that can catch early

indicators of likelihood to get aplastic anemia.

Good luck!

aa. >>

My son, now obese from all these drugs, experienced no weight loss on

Felbutol.

November 10, 1999

Be prepared for a lot of weight loss on Felbatol. There is now a urine test

(sponsored by the drug company that makes Felbatol) that can catch early

indicators of likelihood to get aplastic anemia.

Good luck!

aa.

Topmom7698@... wrote:

> From: Topmom7698@...

>

> wow!!! felbatol is one of the last resort drugs that doctors talk about

> becasue of the side effects. liver damage and aplastic anemia. how long have

> you been on it. they are talking about trying it on my son and would like to

> learn more

>

> julie

November 10, 1999

> My son, now obese from all these drugs, experienced no weight loss on

> Felbutol.

Well, everybody's different. But the literature states that while Depakote

often

leads to weight gain, Felbatol often leads to weight loss, usually because of

decreased appetite and nausea. I lost 20 pounds on it. Gained about that much

on Depakote (coming to it from Felbatol) before switching back to Felbatol.

aa

November 10, 1999

my son was on depakote for a very short time and gained 10 lbs the first

week. he's been on neurontin for quite sometime and although he's a big kid

he isn't considerd fat.

one problem we're having is that he seems to be having a problem with his

skin only facial and I'm not sure if it's an allergic reaction or not. his

eyes are puffy and his skin looks like small hives. i have given him bendryl

in hopes that it clears. any thoughts would be helpful.

julie

November 10, 1999

In a message dated 11/10/1999 9:08:12 AM Eastern Standard Time,

Topmom7698@... writes:

<< From: Topmom7698@...

my son was on depakote for a very short time and gained 10 lbs the first

week. he's been on neurontin for quite sometime and although he's a big kid

he isn't considerd fat.

one problem we're having is that he seems to be having a problem with his

skin only facial and I'm not sure if it's an allergic reaction or not. his

eyes are puffy and his skin looks like small hives. i have given him bendryl

in hopes that it clears. any thoughts would be helpful.

julie >>

Does his neurologist know about this rash? With lamictal, rashes are red

flags to potential problems.

My son was on Neurontin, too, for a couple of years.

Please tell the doc about the rash even if benadryl provides some relief.

M

November 11, 1999

In a message dated 11/11/1999 7:20:09 PM Eastern Standard Time,

amy.norsworthy@... writes:

<< Does anyone else have any long term experience with Lamictal? >>

My son, formerly on Felbutal for over a year, and also on and off

Neurontin along with Depakote and Lamictal, is now on Depakote and Lamictal

alone for about two years.

We are told to watch carry for rashes every time his dose in increased.

He seems to tolerate it quite well and is on lower doses of Depakote because

of it.

November 11, 1999

In a message dated 11/11/1999 7:10:47 PM Eastern Standard Time,

amy.norsworthy@... writes:

<<

From: " Amy Caruso (Norsworthy) " <amy.norsworthy@...>

I started before the aplastic anemia report surfaced. I was on it before it

was officially released to the public. I had already been on it longer than

6 months so my doctor gave me the option to stay on it or change. It was

working well for me and all cases of aplastic anemia had been reported

during the first 2 months of treatment. If a person had been on the meds

longer than that, they were considered " safe " . Seems to me that considering

the side effect that ALL antiepileptic drugs have, the benefits to Felbatol

for outweigh the risk. The reported cased of aplastic anemia weren't

actually as high as it seems. 1 in a few hundred thousand or so. Most

cases were in the African American population. Never the less, if you are

that one person, you really don't care about the statistics. As for liver

damage, I don't know the stats on that. My doctor, who is wonderful by the

way - he is a pediatric Neuro. But has agreed to see me as long as I want -

could probably tell you anything you wanted to know about the drug. His

name is Dr. Roy Elterman in Dallas, TX. If you like I will gladly give you

his number, you can call me too if you'd like. I'll help in any way that I

can.

>>

Amy

thank you for sharing this with use. Yes, I would appreicate contact

information on Dr. Elterman.

November 12, 1999