Help!!!Kids and family living with epilepsy, how to help them cope?

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seetseet

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My kids are 4 & 6 years old and since January they have seen 3 of my TC seizures, the first two being nocturnal, which scared the hell out of them because they thought o had turned into a zombie. The last being a daytime one, where there was a lot of blood again with the scary sounds.
They both thought i was dying with the first two, this third one my eldest thought "i was going to have a baby come out of my tummy" (hehehe pretty funny) but the little one thought i was dying again. We have tried to explain it to them, but any advice and ideas as to what i can say to them i would reeeeeally appreciate!!
My husband struggles with it a lot too, and now that my nocturnal seizures have turned to daytimee ones, he is really out of it as well (because we basically solved it by sleeping separately, him with the tv on in his room so he couldnt hear it as much when they happened and me not falling asleep infront of the tv or anything) because even like that he was out of it after a NOCTURNAL for a good 2 weeks, sweaty palms, high blood pressure, really pale constantly!
So i cant imagine what they must be going through now!
Please help me with any ideas, experience, advice, links ANYTHING that could help them!!!
Thank you ahead of time!
 
Educate them.

Teach them as much as you can considering their age.

My mother had seizures when i was 3-6yrs old.
 
What sort of things would you say to them? What did they say to you? How did you cope with it?
 
Hi seetseet,

I would be very open with the kids and break down what epilepsy is so they could understand it. (ex. to much electricity going on) or if you can think of something different.

I've found being very open about the seizures is a big help and I have told all of my family as well as all of the students and staff I work with in public school. I teach them about epilepsy and what to do if I have a seizure, this helps them understand it much better and not to be afraid.

I've had epilepsy for 46 yrs. now and had 2 surgeries. I just tell myself it could be a lot worse the seizures only happen every now and then but look at a person who suffers with other medical conditions like cancer they have to live with it everyday.

Wishing you the best of Luck and May God Bless You and Your Family,

Sue
 
Again I recommend being totally honest but note that I'm not a doctor. They should know what to do if you keep seizing. Tell all of them again and again and again.
 
Again I recommend being totally honest but note that I'm not a doctor. They should know what to do if you keep seizing. Tell all of them again and again and again.


Be totally honest with them by showing and telling them what to do in case of Emergency. My two now grown children saw their momma have plenty of seizures when they were growing up (CPs as well as TCs). When my daughter was 6 and my son was 3, they witnessed the first of many tonic/clonics. At that time I had tried to educate them on what to do and who to call. My daughter knew to call the neighbor, who was aware of my seizures, as well as calling 911. Their father was a pilot, so there was no way my children could roll me on my side by themselves. My daughter did call 911 and then the neighbor(s) came to rescue my kids. My husband flew home later that day to rescue all of us.

For some great tips on seizure first-aid, here is a website that all with epilepsy should view:
https://www.epilepsy.com/learn/seizure-first-aid-and-safety
 
There are books for children to educate them about epilepsy. It's fear of the unknown that's worse for them and once they understand what's going on and that you are not dying but have a very common health condition they'll be able to deal with it better. Perhaps your husband should read it too because his fear will make them feel all the worse - he needs to educate himself and support you not shut you away, it's just a seizure and he can deal with it - if he tries.

Plenty of books on eBay & Amazon, here's one.
https://www.ebay.co.uk/p/My-Mommy-H...6%26rvr_ts%3De6d943b51630a9c48b435eaefffe50c2
 
There are books for children to educate them about epilepsy. It's fear of the unknown that's worse for them and once they understand what's going on and that you are not dying but have a very common health condition they'll be able to deal with it better. Perhaps your husband should read it too because his fear will make them feel all the worse - he needs to educate himself and support you not shut you away, it's just a seizure and he can deal with it - if he tries.

Plenty of books on eBay & Amazon, here's one.
https://www.ebay.co.uk/p/My-Mommy-H...6%26rvr_ts%3De6d943b51630a9c48b435eaefffe50c2
Thanks Freda, I will definitely check it out x

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