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Old 10-27-2003, 12:04 PM   #1
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LisaGuthrie HB User
Cool Wish your parents would have done something different about your E while growing up?

Hi everyone,

There are several new parents on the site with children of all ages. There are lots of newly diagnosed teens as well...

Something I've thought and wondered about for some time now is:

How would you have wanted your parents to act/react to your Epilepsy? What would you have wanted them to do differently and why? What did they do that best supported you?

You can't go back and change your past, but your words NOW could impact a young persons life greatly today.

I don't want to blow it with my kids... Jenny is the one I'm most concerned with at the moment. It's new to her, she didn't grow up with it... How can I best help her?

Thanks everyone,

Love and light

Lisa and kids

 
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Old 10-28-2003, 07:57 AM   #2
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amydianne1 HB User
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Hey Lisa!

I'm SURE you are doing a wonderful job with Jenny! You are obviously a great mother and very supportive to both kids, and do whatever it takes to make them feel better.

I had a grand mal when I was 15, I also had complex partial seizures as well but didn't know what they were. This was back in 1986. I KNEW that something was wrong with me in regards to the complex partial's, but had no idea what they were, and you are so self conscious at that age anyway. I tried to explain them to my neurologist, but he chalked it up to puberty, teenage years, etc, even though I KNEW that it was more than that. He told my parents the same thing, and that's what they assumed it was too because this was coming from a doctor. He told them that you can have a grand mal once, and never had one again, so they thought nothing else was wrong.

I don't blame them for anything, but after all the problems I have gone through the past few months, my mother told me she feels so bad because they maybe could have done something different back then. The only thing I wish is that they would have taken me to a different neurologist when I kept saying that something was wrong with me and had been better able to understand that. But, they took the doctor's advice and just thought it was part of growing up. I was more upset with the doctor for not looking more into it. But, the point is I'm getting taken care of now, and I don't blame anyone, I'm just glad I'm getting them under control now.

Anyway, that's all the words of wisdom I have! Just wanted to share that with you.

Hugs to you,
Amy

 
Old 10-29-2003, 05:16 AM   #3
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Karla HB User
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I am 37 years old. I have been siezure free for the last 10 years but prior to that I had complex partial siezures for as far back as I can remember. They seem to always have been there with me. My parents failed to recognize that I had epilepsy and I went undiagnosed until age 19. I wish they would have been educated about epilepsy and more observant. They have been wonderful supporters since I was diagnosed.

 
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