Epilepsy/Seizure disorder

I was interested in possibly starting a peer support group for those living with epilepsy or a seizure disorder or parents that have children. Is there anyone interested in this? The education department at the hospital said that support groups don't work here because most only show up once or twice. My son has been recently diagnosed and I have to figure out how to live with this instead of it running our lives, doctors really aren't great in that aspect.

Don't blame the docs. It's not their domain. Leave them otta it.

rocks wrote:

Don't blame the docs. It's not their domain. Leave them otta it.

Thank you for reiterating what I said, that's my point exactly, thanks for the support.

This is a bit discouraging. No one else has seizures or children with seizures that can be a part of a much need support team? People wonder where our community went...

I'm sorry to say, But in Malone its like going to AA, their a stigma to it and people talk.
Try Plattsburgh.

Trust me I know.

xd

just a mom4 wrote:

I was interested in possibly starting a peer support group for those living with epilepsy or a seizure disorder or parents that have children. Is there anyone interested in this? The education department at the hospital said that support groups don't work here because most only show up once or twice. My son has been recently diagnosed and I have to figure out how to live with this instead of it running our lives, doctors really aren't great in that aspect.

i would do a google search for support groups, you might be surprised at what you find online.

and i forgot to wish GOOD LUCK to you and your family!

Try My.epilepsy.com Community.

I hope it helps.

xd

bogey-man wrote:

<quoted text>
i would do a google search for support groups, you might be surprised at what you find online.

I was hoping to find a way to gain access to immediate feedback. I've tried to ask questions in online groups and such but no one responds. I have a 6 year old that has seizures and we have found that is actually MUCH harder to live with then we expected. I need real-life solutions.

xdrunk wrote:

I'm sorry to say, But in Malone its like going to AA, their a stigma to it and people talk.
Try Plattsburgh.
Trust me I know.
xd

I went to AA Meetings with a friend for support there were a lot of people there then. I don't know why there has to be a stigma to seizures, it's medical and uncontrollable. People are so cruel and ignorant.

bogey-man wrote:

and i forgot to wish GOOD LUCK to you and your family!

Thank you =)

I also have a young child who suffers with epilepsy. It is incredibly tough on not only the child, but the family, so I understand the want for a support group. I live in Plattsburgh, and am not aware of any groups even out here. Did they classify what type of epilepsy your son has? or were they able to find a cause, I just know it took some time for us to figure out hers was temporal lobe epilepsy. I know it can be incredibly frustrating because it can take alot of time and alot of testing to get to the bottom of the problem, and get medication regulated. Good Luck to you and your family, stay strong, I know its not easy!

MommaMia wrote:

I also have a young child who suffers with epilepsy. It is incredibly tough on not only the child, but the family, so I understand the want for a support group. I live in Plattsburgh, and am not aware of any groups even out here. Did they classify what type of epilepsy your son has? or were they able to find a cause, I just know it took some time for us to figure out hers was temporal lobe epilepsy. I know it can be incredibly frustrating because it can take alot of time and alot of testing to get to the bottom of the problem, and get medication regulated. Good Luck to you and your family, stay strong, I know its not easy!

Call the TBI Center at SUNY Plattsburgh. They are a good source of support groups for all kinds of medical concerns.

Thank you BOGO 12953, I will have to look into that!:)

I would think the people running the Community Health Services at Alice Hyde should be able to steer you in the right direction. Josie Delaney
( spelling???).

I have a child who has tonic cronic epilispy as well he has adalession sezuires. It is hard on children as well as just as hard on the family. Everytime my child has one it takes alot out of a child so i am with you. It gets better they have had my son on Trileptal his he was 2 and it works wonders. Good luck.

City Slicker wrote:

I would think the people running the Community Health Services at Alice Hyde should be able to steer you in the right direction. Josie Delaney
( spelling???).

No, she just called me a liar the other day when I spoke to her. Claims I never left her any voice mails over the last 2 months. She said Malone won't even consider one because Alice Hyde has no neurologists.

MommaMia wrote:

I also have a young child who suffers with epilepsy. It is incredibly tough on not only the child, but the family, so I understand the want for a support group. I live in Plattsburgh, and am not aware of any groups even out here. Did they classify what type of epilepsy your son has? or were they able to find a cause, I just know it took some time for us to figure out hers was temporal lobe epilepsy. I know it can be incredibly frustrating because it can take alot of time and alot of testing to get to the bottom of the problem, and get medication regulated. Good Luck to you and your family, stay strong, I know its not easy!

Well, they haven't classified it as far as I know, some say epilepsy, some say seizure disorder. In March he started having partial complex seizures due to a congenital brain defect. He should have been seizing much younger and they have no idea why it manifested at the age of 6. They think he should be severely handicapped yet he was reading at 3. They have placed so many restrictions oh him that it affects all of my children. It's a complete emotional roller coaster, I wonder how we could get in touch, I would be happy with just having people to call and be able to return some favors. We have a follow up Wednesday in Burlington.

Mother of one wrote:

I have a child who has tonic cronic epilispy as well he has adalession sezuires. It is hard on children as well as just as hard on the family. Everytime my child has one it takes alot out of a child so i am with you. It gets better they have had my son on Trileptal his he was 2 and it works wonders. Good luck.

My son just had 2 seizures on Tuesday, we're still recovering. It's horrible. I don't know what tonic chronic epilepsy or adalession seizures are. My son takes Keppra

BOGO 12953 wrote:

<quoted text>
Call the TBI Center at SUNY Plattsburgh. They are a good source of support groups for all kinds of medical concerns.

I will do that for sure!