I'm looking for the same thing. I looked up this NG hoping it was going to
be an active group, but sadly it seems it doesn't get many posts, which is
really to bad considering how many people have to deal with this disease. I
have a 9 year old daughter that has had epilepsy since she was 3. It was
manageable for many years, but this last year has been pure hell for us all.
She missed almost 3 months of school last year because of her seizures and
we have been trying so hard over the summer to try and get them under
control with very little luck. Anyway her problem is tearing my marriage
apart. The stress is overwhelming and constant. Any info would be greatly
appreciated. JLC

I Glen, welcome to our group.  I haven't checked in lately, been kind
of busy and today I am testing the google group.  I think you make a
good point.  It would be good to have more support for those family and
friends who are coping with someone who has epilepsy.  I have had
epilepsy since I was a pre-teen.  My husband and I drop in on our local
epilepsy support group once in a while.  I think the most helpful to
him has been when we have a guest speaker who specializes in epilepsy.
That is how we found our epileptologist.

But I also think it will help you to know where we are coming from to
help you understand how we feel before, during and after a seizure.

So let's start with some basics.  Who in your family/friends has
epilepsy, age group, gender, what type of seizures does he/she have and
how long have you been coping?

We'll have more questions as the discussion progresses.

Julie, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

I have a brother who is an epileptic.  I find this newsgroup valuable
because part of dealing with a family member with a seizure disorder is
to not feel like an island, coping by yourself.  It is helpful to know
that the things he deals with and the way he feels about himself, his
disorder, his life, his doctors, his meds, not being able to drive,
whatever - is not strange or unusual.  I find the sharing among those
with epilepsy here helps me understand more about what he is going
through and gives me clues how to deal with him empathically.

Even being involved in the local Epilepsy Foundation doesn't exactly
fill that gap because the chapters are so far apart and you don't always
have others geographically close to you to give or get support.  My
brother is living independently now, after living with me for many
years, so he can be close to and involved with the 'local' epilepsy
foundation - but that leaves him an hour away from the closest family
member. It is a challenge now to stay atune with him.

Good luck in your search.  There is more support for everyone here than
before, there will be more support as time goes on.

Kathie Robinson
Big sis

I have looked for them too. Those that have loved ones with epilepsy suffer
really badly too. My son has had epilepsy for 16 years. Here is his story.
http://www.mayoclinic.org/checkup-2006/track-jan.html
I have found that people don't want me to talk about it. I joined the pen
pal club at The American Brain Tumor Association and have made a life long
friend from it. She listens better then I do when she's gone through hell
too. My son is doing so well and her daughter is getting so much worse. She
had a large brain tumor that left her using a walker to get around at age
28. She will probably always live with them. Yet,my friend consoled me,gave
me info and held me up more then I did her.
We never knew what to expect from the medications. David was on Dilantin for
15 years but they kept adding another drug to try and stop his seizures. He
was taking 16 to 17 pills a day and it got to where I worried more about the
toxic affects of the meds then the seizures. Plus, no med ever really
controlled his seizures. And the side effects were often more terrifying to
me then the seizures. He would just bolt before we could catch him and he
was almost hit by cars several times before someone could catch him.
Yet,none of my friends and family even seemed to want to hear about it so my
friend was all I had. I had some counseling but it's so expensive and so
hard to find a counselor that you like,it just was not worth it to me.
Feel free to email me anytime.
Janie