Hello.I am new here and was reading through some of the posts.I thought I would tell you all about my seizures.I was 13 when I first had one.They were all grand mal seizures.I would be out for about 3 minutes and then wake up with a terrible headache and was very tired.Well I am 45 now and God bless, I haven't had a seizure in 12 years.I don't know why.Maybe it is just dormant for now.I take Dilantin for the seizures.When I had them I could feel it coming on and I would put my head down and yell no and sometimes it went away.
I can relate to all the people in here who go trough this hellish disorder.Does anyone ever feel ashamed after they have one? I always did. Well it was nice to be able to post in here and if I can help in anyway just let me know.
Don

I don't feel ashamed after I have one. If I'm around people that don't know what I'm going through, that is a pain when I finally come through. I just wish they wouldn't make such a fuss over me. The ones that I had around my family went ok. That just kept a watch over me and then when I woke up they were there to talk to me. Things could be worst, so I don't feel ashamed at all.

Blane
I too have only grand mals since I was 19. No, I don't think your epilepsy is dormant, you, like me are fortunate in that it's very well controlled. I've thought perhaps mine was dormant in the past and cut or decreased my med, resulting in another seizure. Are those damn grand mals just the worst thing in the world or what? God, I feel like hell for a day afterwards and have jaw and muscle pain for days. When you asked if you feel ashamed? The first thing I say when I come around is "Oh, God, I'm so sorry!" I've apologized to anyone from my husband to nurses in the ER! I think part of it is the instability of your emotions following a seizure. Anyway, keep taking your Dilantin and hopefully seizures will always remain just a memory...for both of us!

PS..I see your from Pa too!

Hi everyone!

My son Jake, 17 months has E - we are working on control, but right now it's not happening!

How can I best educate him so he doesn't grow up feeling that shame. I don't have a problem with epilepsy - I had a friend in HS who had grand mals, so as much as I hate that my baby has it, I can except it.

What I'm having a hard time with is knowing that others don't often view E in the same manner that I do! And I want him to be ready for the day he may have one on the school bus or class room. Any ideas or thoughts are greatly appriciated!

Thanks

Lisa
Jake 12/31/03

Lisa
I was thinking about your question, and here's my thoughts. As Jake gets older, don't ever conceal or let him conceal his condition. I did that myself for years! Why? because I was ashamed of it, I thought acquaintances would think less of me, think I was less intelligent than I am, think I was weird. It is so liberating to be open about it. As I said in an earlier post, I told my new colleagues at work about it, and guess what? I wasn't fired, or treated different. I got a few "really? you!" responses. I guess I didn't seem mentally handicapped enough! http://www.healthboards.com/ubb/tongue.gif However it is so relaxing to not have to worry about their response if I were to have a sz at work, I won't have explaining to do after I scared the hell out of them. The only way we can change societies attitude is one person at a time understanding what the condition is. Educate his friends and teachers when the time comes. Years ago the Epilepsy Foundation had a public service announcement about epilepsy and it ended with "epilepsy, it's not what you think it is". Children can be cruel, however they also mirror the attitudes they see around them, when Jake is older and his friends see a sz and observe how you and he respond to it, it won't be a big deal to them. There are many chronic condiitions, diabetes, learning disabilities, asthma, why don't people feel shame about these? I think largely it has to do with OLD attitudes that have hung on, and the neurologic component involved. I said it before, Jake is a lucky little boy to have such a great family, he'll do fine with such a strong support system.

Oh, and lastly, there will always be small minded asses out there, they have the condition to be ashamed of!!

The reason I mentioned that I was ashamed of it was because I was called retarded once or twice.And these were people I knew well.I know Jake will be ok because of your great concern about it.I don't open up to Epilepsy to anyone.I am a twin by the way and I seen my brother go through it and I was scared which I shouldn't have been.Epilepsy has kept me from doing the things in life I wanted to do.Don't let your son be that way.Encourage him in everything he does.This way when he gets older he won't feel different or be afraid to do what he likes,i.e. sports,etc.I hope this helps you some.
Don

Terese - Don,

Thanks so much for sharing. I've worried about what his attitude toward E will be.

We have ran into some pretty nasty people. I think the worst was a nurse during his 1st hospitalazation who said she thought he was a Down's baby. She went on and on about it, that I should ask for this or that test. At the time we didn't have a clue about what was going on, but she made me so mad I wouldn't let her treat Jake. But that's a whole nother story http://www.healthboards.com/ubb/eek.gif

Jake can look pretty wild at times. Grand mals cause his face to swell, one eye to droop, they both get this funny squint and his tounge hangs out. ...and then there's "The Claw"! His left arm draws up close to his body and his hand curls into a claw!!

We went through several months of stares every time we took him anywhere. We got use to them, I'm just hoping that he understands that the ******d physical things are just that - ******d physical things!!

Do either of you think there is a learning style that most people with E share. This is a big thing for us right now, how to maximize his learning ability while he's not having daily szs? Just a thought!

Thanks again! Hugs to you both!!

Lisa and Jake

[This message has been edited by LisaGuthrie (edited 06-19-2003).]

Hello Lisa,
As far as I know there should not be any disibility towards learning anything he wants to.It don't effect what a person can learn or be taught.I think the one way for him not learning would be to get very depressed which I did.To this day depression is with me.But everyone is different in their own way.
So just keep encouraging him in all that he does.This will surely help him in the long run.

Keep smiling,
Don