One year old on Zonegran or Topamax????

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saborazul@hotmail.com - 19 Feb 2005 08:25 GMT

Hi everyone,

We hadn't posted in a while. We had actually been enjoying having a
seizure free baby until just very recently. Delilah is now one year
old and she has had a few breakthrough seizures. One in late December
(her phenobarb dose was increased from 5mls to 6mls) and two in the
last 10 days. The most recent was a 2 minute grand mal in which her
finger tips, lips and eyelids turned purple due to insufficient oxygen.
Very dramatic.

She is currently on 7mls of phenobarbital (70 mgs per 5 mls) After
this last seizure her neuro wants to up her phenobarb to 8mls and wants
us to consider switching to Zonegran or Topamax.

Could anyone share more information with us on these two drugs. Our
neuro gave us the basics. We'd like to know how taking these drugs
makes a grown up feel. We'd like to also hear from anyone who has
children with epilepsy and what their experience has been with epilepsy
drugs. Any recommendations or advice please.

We thank you and so does Delilah.

Cynthia and Delilah

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Liz & Allan MacDonald - 19 Feb 2005 13:16 GMT

Hi Cynthia,
I have experience with Topamax which I wouldn't wish on anyone. It put
me into a state resembling clinical depression. That is not an uncommon
side effect, even if the dose is increased very slowly, as mine was.
Of course I'm only one data point, but I'm not sure how you'd be able to
tell if it's having that effect on Delilah.
Liz

> Hi everyone,
>
[quoted text clipped - 11 lines]
>
> Cynthia and Delilah

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Dave ???? - 19 Feb 2005 16:53 GMT

Howdy!

I had some side effects with Topamax too.

My mood swung the other way... from "normal" to (for want of a better word)
"incited." I ALMOST got violent once or twice.

Signature

Dave ????

http://www.howdydave.com

> Hi Cynthia,
> I have experience with Topamax which I wouldn't wish on anyone. It put
[quoted text clipped - 19 lines]
> >
> > Cynthia and Delilah

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Sofia - 20 Feb 2005 02:32 GMT

> Hi Cynthia,
> I have experience with Topamax which I wouldn't wish on anyone. It put
[quoted text clipped - 3 lines]
> tell if it's having that effect on Delilah.
> Liz

Hello Liz, sorry to hear you had such nasty side effects from topiramate,
as it seemed to control my seizures quite well, but like usual, we're just
two different individuals having our own different side effects to the
drug.

My side effects to topamax were much closer to those of angeleyes, as in
the beginning, when I first started taking it, I used to get an
extremely bad loss of appetite and concentration, but later on, this began
to fade away till I was left with just the drowsiness and tiredness like
most other drugs.

By the way, can I also ask Cynthia if her neurologist has told her how
long Zonagram has been around, as I don't think I've ever heard of it.
I mean, if it's a very new drug, and nobody has said they've been on
it yet, to have suffered it's after effects, then maybe Delilah is
one of the first...unless somebody can prove me wrong of course, and tell
us all how they've been on it for years, and all the consequences and side
effects that come with it.

Sofie

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turbinado - 20 Feb 2005 03:17 GMT

Topamax had a bad effect on me as well - depression, speech difficulties,
muscle spasms and when the dose was raised to 500 mg, something like
psychosis.

> Hi Cynthia,
> I have experience with Topamax which I wouldn't wish on anyone. It put
[quoted text clipped - 19 lines]
> >
> > Cynthia and Delilah

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angeleyes1@ntlworld.com - 19 Feb 2005 22:00 GMT

>Hi everyone,
>
[quoted text clipped - 19 lines]
>
>Cynthia and Delilah

I had the unpleasant side effects from Topamax a few years back. I
was really depressed and couldn't eat. I tried to force myself to eat
a sandwhich but I only managed half in one day.

On the upside, I have heard of cases where it was very successful.

Best of luck

Angeleyes

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turbinado - 20 Feb 2005 03:30 GMT

I also lost about 15 lbs - which in my case was a good thing, but might not
be for everyone.

> >Hi everyone,
> >
[quoted text clipped - 29 lines]
>
> Angeleyes

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