Explaining a Parent's Epilepsy to a 4 Year Old

Updated on July 22, 2011
E.S. asks from Helena, MT
9 answers

I have epilepsy and it was controlled by pills until just recently. Now I'm having petite mal seizures, and my four year old is asking a lot of questions (esp. since Mommy can't drive anymore). Most of the literature out about this talks about explaining grand mal seizures to children. I'm having a hard time explaining epilepsy and especially my kind of seizures in a way that she can understand it and not be overwhelmed/confused. I'm wondering if anyone has been either the parent or the child in a similar situation and, if so, what worked/didn't work.

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D.K.

answers from Denver on

I am not a medical expert. However I would maybe draw a picture of your brain showing wires and a light bulb of sorts. How maybe that sometimes when it seems things are fine, there is a short circuit, like maybe use a lightswitch as an example. If the wiring is off sometimes it fails and the bulb won't go on. That is when you have a seizure happens and it takes a while before it fixes itself again. Explaining how if you drove that isn't safe for anyone if the wiring went bad while you were driving and that it is better to just be somewhere it is safer. I think educating them is so great and she will be ahead of the game.

Kids are amazing sponges and as she gets older her ability to grasp it even more is helpful.
I would also teach her about 911, her address and phone number. Seeing that some day she may have to call for you. It is amazing how fast they can learn this. Since I am a single mom both of my kids know what 911 is, how to call it, when to call it, what their full names are, addresses and so on. Just in case. Scary thought but the reality is they could save your life one day.

I don't know how helpful that is, but she will understand even more eachy month that passes, keeping her aware, educated is a gift for both of you. Kids are smart and giving them the truth is so important.

1 mom found this helpful
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S.S.

answers from Cheyenne on

E.,

Sorry this is so long...I don't have seizures and neither do any of my kids, but my dad was a neurologist, so I knew what seizures were from a young age. There was a little comic book called "Seizure Man" that I used to read all the time when I was a little girl that explained seizures to young elementary-aged students. It was really informative and put them in a reasonable, not scary light. It also told the kids what to do and not do during a seizure.

I would also recommend a little role play. Just like how we teach kids to call 9-1-1 with a (uplugged) real telephone and role play, I would show and tell her what it will look like and how long they might last (if you know) and what to do if she sees Mommy on the floor...i.e. how to check your breath, how to roll you on your side (if she can) and how to call Daddy (or another grown-up who knows) if she is worried for you so they can talk her through this. You might also get a phone with the big speed dial #s for 911, fire and Daddy because she may be flustered a bit when it happens until she gets more used to it and might forget the #s.

I would also consider taking her to a neurology appointment with you so she can ask the Dr. as many questions about it as she has. He may have some literature or ideas on how to expain it too if you call him (or see if there is a pediatric neurologist near you that you can call to get ideas as well). I'm sure they both would have ideas as they deal with kids quite often...both in families with seizures and as a patients.

It also might help her to have you make a big poster of pictures for the wall that she can go to or take with her to you that reminds her in pictures of what to do when you are having a seizure. It also might help her to go to class...if she is in preschool or once she reaches Kindergarten... and teach the kids what a sieizure is (if you wouldn't find that too embarrassing). Anyway, hope something here helps. I can remember learning about seizures from about your daughter's age and as long as she is curious and asking questions, she is old enough to learn the answers.

Here are some resources I found online while googling for you...
This list has lots of resources that are available to you that you can contact the guy and he will send them to you...
http://www.efmn.org/index.asp?Type=B_BASIC&SEC=%7BFF0...

Another list, but this has it broken up about 1/2 way down into age range-approppriate books and such...
http://www.vanderbiltchildrens.com/interior.php?mid=996&a...

The seizure man comics (don't google it...some idiot decided to make some very off-color paridy of it...not cool) but here are the names and the author of it so maybe you can contact them.
-Seizure Man: First Aid for Seizures
-Seizure Man: In the Classroom
Both are done by Bowman Grey School of Medicine (now the Wake Forest University School of Medicine on the Bowman Grey Campus) so maybe contact the school and ask for the neurology department and see if they are still in print if your dr. does not know.

Good luck and let me know if you need any other ideas or if the link aren't working. Also, let me know what happens with your daughter...if any of my ideas work. :-)

S., 26, mom of 15-month-old and #2 on the way

1 mom found this helpful
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K.D.

answers from Provo on

I haven't been through this one -- but my nephew has epilepsy. My sister explains his epilepsy to his younger siblings about the age your daughter is. She tells them that something inside his head is broken; like when you break a toy and it still works mostly right, but can't do everything it could before. This can help you explain the petite mal seizures and then move on to the possibility of grand mal seizures. Knowing 911, name, and address are a good idea for your daughter at this age regardless of the epilepsy. Good luck to you. I hope you can get control of it again.

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A.C.

answers from Chicago on

I think honesty is the best answer. I had a grand-mal seizure 5 months ago - witnessed by my 5 yr old daughter. My neuro diagnosed me based on her description of what she saw (she is very verbal and gave a very good description of a seizure). Next three months followed petite-mal cluster seizures and I am finally seizure free for a month. I have told both of my kids (I also have a 3.5 yr old son) I don't drive to be safe and that my brain has hiccups. Little hiccups are no big deal but if I don't answer or have a big hiccup that lasts a long time they call 911 - not because I am introuble, but so that they won't be alone).

We had lots of little conversations about it and they seem to be doing better. My 5 yr old was angry about me not driving for a long time but now we try to make every outing an adventure. Which is the truth because navigating the suburbs without a car is a bit of an adventure.

Anyone here literary enough to write a book for kids? I certainly am not.

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P.G.

answers from Salt Lake City on

I have lived with epilepsy my whole life and it has not been fun, but I have taught my kids that if when is a problem to please wait a minute until the worst of it is over. I go unconcious for 30 seconds to 90 seconds when I am unable to respond to things. Then I get really tired and usually have to sleep for a while. For me it has always been embarrassing, but if I tell a few people about it they can help me if there is a problem. You should make sure some of your close friends and neighbors know what to do if you need their help sometime. If your daughter sees you having a sezuire sometime and your husband is able to help you through it your daughter will learn eventually how to help you when you are away from home. It's hard to explain to kids, but they learn by watching. Good luck. I hope you are able to take care of this ASAP. P.

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C.T.

answers from Billings on

Hey E.,
First off I am so sorry your seizures have returned. My husband has adult epilepsy however his seizures are strictly grand-mal seizures. We too have a 4 year old son. We recently started educating him a little more about his daddy's seizures and let me tell you it has been tough. I am not sure if this will help or work for you but here is what we have done.

We explained to him that daddy has seizures and this is when he is really sick and needs help. We have had several conversations about what happens (daddy goes to the hospital in the ambulance while he goes to his gramma's then daddy has to sleep for a long time and we have to be quiet). We have not described the shaking, rather daddy's brain does not work when he has a seizure and he forgets everything. We live in a rural area so we have told our son if daddy cannot talk or remember his name then he needs to go to our neighbors house. We have not wanted to teach him to call 911 as we thought he was too little to understand the appropriate times to call.

Unfortunately we have had to resort to very limited time that daddy is left alone with our little guy. Daddy cannot drive, especially with our little man, so we turn that into a game. I have found that having us and our family members talk more about the seizures and what happens is helpful to our son. Rather than shielding him from the aftermath or what seizures are. It has been helpful (as weird as that may sound) if his daddy does get an injury during a seizure we can show our son and explain how it happened. I wish you the very best of luck and if you have any more questions or need to vent frustrations, feel free to contact me!! Take care or yourelf!

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M.V.

answers from Fort Collins on

Hi E.,
My husband does have epilepsy mostly grand mal and we have two boys ages 8 and 4. My husband goes through spurts with his and I have been working with my sons from around 4yrs old to show them with acting out what happens to daddy having a seizure. I also try to go over with them that Daddy does not always have to go to hospitals but that daddy needs to rest. Watch daddy to see that he is not hitting his head. They are to go get a neighbor who are aware of my husbands condition and just monitor him through it.
I asume with petite that he is making sounds and standing abrubtly, I also had a roommate with 20 seizures a day so I have some background there as well. If you just want to talk with me privately feel free to call me or email me at [email protected]____.com and we can be there for each other. Many people just do not have the same fears that us wife's with husbands and epilepsy have.
Don't cover up the problem with the kids be honest and walk through what you want them to do. Remember if you feel you need 911 fine, but you already know he has epilepsy so paramedics will just make sure he is stable.So give your kids guidelines to follow and they will stand ready to be there for their daddy. Best wishes and I am here if you want to talk, not type. M.

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B.K.

answers from Denver on

GREAT response, Sarah! I learned a lot too! Thanks so much. Best to you, E..

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A.B.

answers from Salt Lake City on

Sorry I am responding late, I saw your post when it first came out, but I have been thinking a lot about how to respond. I have siezures, I did not have them as a child and started having them with my last pregnancy, when I was 29. I have 3 different kinds of seizures, and all present different. I have petit mal seizures, grand mal and partial lobe seizures. At the time I was diagnosed, my kids were 8, 6, 3 and 2. Trying to explain all the different things that can happen can be very overwhelming for both parent and child. My 2 youngest knew something was wrong, but didn't understand. In fact they would role play my seizures, with my daughter, falling to the ground and shaking, or staring off into space, and my son would act panicked, moving stuff away from her and talking to her very calmly. It was funny, cute and very sad at the same time.
Explaining to my older kids was much easier, they are pretty mature for their ages. With my younger kids, we told them that sometimes mommy's brain gets tired or overworked and it causes mommy to act funny. We talked about the best thing that they can do is to get dad or call grandma and then to sit by me and talk to me. My oldest daughter, would have the younger kids sing quiet songs or say a prayer until the seizure would stop. My 3 year old felt that if she held my hand during the times that I blanked out that it would help me. Which made her feel very important. My youngest started following her lead.
While seizures are and can be scary for kids, if you give them a way to make them feel like they are helping they deal with it a lot better.
Good luck to you, I will keep you in my prayers.

A.

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