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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How Did You Explain Your Epilepsy To Your Kid(s)?

A MyEpilepsyTeam Member asked a question πŸ’­
Baton Rouge, LA

Did you show them what to do if you were to habe a seizure around them? I just wanna prep myself to have this conversation when my baby gets old enough

March 20, 2020
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A MyEpilepsyTeam Member

most of my family decided that I'm faking epilepsy and no longer speak to me. While on a trip, my daughter's friend, who was with me in case I needed help, left me on the floor to die when I had a terrible seizure. It lasted 3.5 hours and she never got me any help at all. That was almost 6 years ago and none of them have spoken to me since. It was devastating to me.

March 30, 2020
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member keep it simple. i have partials to grand mals seance i was a kid. the students were trained to set me down on the ground and put me on my side. i was in 1st grade when it happen and immediately the kids new what to do. so when your kid remembers stuff, teach um the ropes.

March 20, 2020
A MyEpilepsyTeam Member

I actually laid on the ground and them roll them over.

April 9, 2023
A MyEpilepsyTeam Member

We started with the more serious discussion: what they look like, what my brain is doing, why I forget things, etc. After, we came up with jokes. My 10 year old boy says Daddy is doing the chicken dance. My 13 year old girls calls me big brain. I taught my son to roll me over and get to my phone, if I were to fall to the ground during a seizure. We actually practiced it. My daughter is a little more in tune and says she feels them coming. Hope this helps but I believe being forward and able to joke about it are both important.

January 24, 2023
A MyEpilepsyTeam Member

I had epilepsy before my son was born and he was born healthy. Thank heavens. So he has grown up, he's now 15, well aware of my issues. Including a crummy memory, seeing events happen, post surgery, walking to school everyday and visiting me in the hospital as a patient after a seizure. Having an entire elementary school support my son on my worst day after a seizure, I consider myself blessed.

December 8, 2022
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