When and What Do You Tell Your Kids?

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Hi Everyone,
I thought I'd bring this topic up for discussion. Feel free to discuss from the perspective of either a parent or child.

I am the mother of an infant who has epilepsy. He only has nocturnal seizures and thus would not know anything was wrong unless I told him. Just wondering at what age I should inform him that he has epilepsy (if his condition continues the way it is now). I assume he'd eventually want to know why he is taking his medications. Also, what words would you use to explain the condition to a young child? What if you live in a society in which there is great stigma attached to the word epilepsy? Would you insist on using the word epilepsy (knowing that it has very bad connotations such as demon-possession in your community), or would you avoid it?

That brings me to my next question. I also have a teen son (age 17) who was just diagnosed with epilepsy this year. We have told him what he has but have not actually used the word epilepsy. He understands what his problem is and knows that his younger brother has the same problem, but we have not given it a name and he has not asked. Yes, I know that may sound bizarre but this is what has transpired. The word epilepsy is on the doctor's reports but the doctor uses other language such as "seizures" or "abnormal brainwave activity" when actually discussing the condition.

How important is it that I provide a name/label?

Also my teen son has been having nocturnal seizures. I have informed the doctor and we have adjusted the medications he is taking accordingly, but I did not tell my son about the seizures because I don't want him to panic.

What are your thoughts about this?
 
Within our family, I'm the one who has seizures. My children have witnessed them since they were little tikes, thus they know their mom has a seizure disorder, but I have preferred to tell them I have Epilepsy because that is what it is. I've told them it is a medical condition just like my son's asthma and can be treated accordingly.

The more we educate, the more we can rid society of the negative connotation of Epilepsy (demon possessed, etc.). I'm not a witch, never practiced any weird activity, never had a head injury, encephalitis, meningitis, had a stroke, etc., but started having seizures out of the blue when I was 22 years old. The docs told me I have epilepsy and I haven't had a problem with that word at all because I know I'm not evil. Society can be because of it's ignorance.
 
i do same as cint,i just add the way you are handling it, is why epilepsy has this stigma...you could try saying they got epilepsy because they have but they are not epileptics,there sutble difference
 
um-adam

From my own experience, your young child already knows something is up and the doctors visits you cannot hide, no matter what words the doctor uses. From my point of view you should sit him down and explain things, then tell him its called epilepsy. You might be surprised just what he realizes, or even knows but will not say anything to you. My parents never told me until I was about to go off to boarding school and at that stage I had been so curious, I asked the doctor myself when my parents were not present. As a child my medication was called sweets and I thought I was special because I was the only one getting sweets in the morning and afternoon. So yes I think tell him and explain it to him. You should also use the word epilepsy and do something similar with the 17 year old
 
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In our house we talk about it - openly at all times. So we can educate and continually together look out and recognize triggers and look for potential alternatives (in conjunction with meds, or to help minimize meds side affects)

http://talkaboutit.org/

Suggest - start seizure diary’s today for both your children (I keep one my Son and he is 26, my from vision or perception he has mainly nocturnal seizures ), note every seizure and anything out of norm.

Will be of great help as you move forward on the journey of medication and doctors. They become the memory we have needed so many times...
 
Hi, I'm a Mom of two grown kids & I am the one with Epilepsy.

At what age do you tell your infant & what words to use?
As soon as he's able to comprehend (not just hear) & as a Mom you'll know when the time is right. But I wouldn't wait long. I'm sure it will be a new word to him, but I would tell him he has seizures like his older brother, and it's called Epilepsy.

Just because he has nocturnal seizures, doesn't automatically mean he can't remember anything of the seizure-and that might be frightening him. It's always best to talk about it.
As far as your teen- tell him the truth and that it's called Epilepsy. He's almost an adult & needs to know the full truth.
 
Thanks to those who answered and shared experiences, both here and via PM. I never meant to be secretive about the illness, but I started noticing people's attitudes and wanted to be cautious as I do not want to subject my kids to gossip and other problems such as job or marriage discrimination down the line. I am taking all your words to heart, though, and will do my best to be open with both of my sons.
 
I think you're an awesome mom for even asking this question! It's very thought provoking.

I'm the mother of 3 kids, and I'm the one with seizures. My kids are 11, almost 3, and 7 months. I've talked to the 11 year old openly about epilepsy because I have no way of knowing if/when I'm going to have a seizure in front of him. I want him to understand that's a possibility, not so that he'll be fearful, but so that I can prepare him for the reality. Watching someone have a tonic-clonic is scary. I had one 2 weeks ago as I was getting my kids ready for school. I'm soooooooo glad I'd told the 11 year old about it, because he was able to help calm my 2 year old down when he got scared. When the 2 year old is old enough to understand, I'll talk openly to him as well...and same with the 7 month old.

I hate that the word "epilepsy" has negative connotations. I use the word "epilepsy" because I want my kids to be educated, and want them to be able to be sensitive to others they may encounter in their lives that have epilepsy. I've talked with the 11 year old about the stigma, and he understands what attitudes other people may have about it. He also understands that the attitudes come from a total lack of education on the matter.

My two year old has febrile seizures...not diagnosed with anything else so far. We also talk about those very candidly with everyone around us, just in case a seizure ever happens. I haven't talked to my two year old about these because he isn't really old enough to understand - and they're tonic-clonic seizures, so he has no awareness of them.
 
thank you Summerf. That is the best way to do it. My 10y.o. boy knows all about it and is used to my condition. He knows when i have a blankout-absence seizure by the look in my eyes and silence. He is kind and maybe now i should talk with him about the stigma attached to that term. And he has not seen it yet but knows i also have T/C seizures. i think he would be ok if it happened in front of him. You're such a cool mom for being frank with them. (pun intended)
 
um-adam said:
That brings me to my next question. I also have a teen son (age 17) who was just diagnosed with epilepsy this year. We have told him what he has but have not actually used the word epilepsy. He understands what his problem is and knows that his younger brother has the same problem, but we have not given it a name and he has not asked. Yes, I know that may sound bizarre but this is what has transpired. The word epilepsy is on the doctor's reports but the doctor uses other language such as "seizures" or "abnormal brainwave activity" when actually discussing the condition.

How important is it that I provide a name/label?

Also my teen son has been having nocturnal seizures. I have informed the doctor and we have adjusted the medications he is taking accordingly, but I did not tell my son about the seizures because I don't want him to panic.

What are your thoughts about this?
Click to expand...

If not told what it is, more than likely your teen son will panic if/when it happens and you're not around to help him. Knowledge IS power! The more he knows about his condition, the better off he will be prepared for life in the long run. If I had not told my children what to do when they witnessed my seizures (and they saw many when they were very young), 911 would probably have been called several times a month. My kid's first witnessed me have a TC when my daughter was only 6 years old and my son was 3. And their dad was a pilot, so they had NO one to help. So I had to tell them and prepare them for my seizures.

Societies (and some religions) provide labels for Epilepsy. It is an ancient stigma that we need to get rid of.
I tell others that I have Epilepsy, nothing to be ashamed of.....
 
The best idea is just to explain assimply as wht epilepsy is and what to expect. I used to be a director at a before and after school day care center. I took some time with the children and explained the illness and they seemed interested, especially when I let them feel the holes inmy skull from my depth electrodes. They knew to call another staff member if I needed help and it happened once. No problems. However several months later a parent witnessed one when she came to pick up her child and I got fired. If more people took the time to explain this ilness andwhat to expect and what they can do to help so much of the stigma would be erased. Good luck to you.
 
Thanks again, everyone, for all your help. I finally sat down with my older son and told him that I wanted to make sure he understands his health condition, and that it is called epilepsy. I started thinking about what would happen if, God forbid, I passed away, leaving him unaware of the actual name of his illness. What kind of mother would I be then?

As I suspected, he did not know the name of the condition and was a bit surprised. He felt that nothing had really changed, though, since it is a mere label.
 
We told the kids a little after my first one, but my daughter witnessed the next one that I had at home. We 'came clean' about everything. It's always surprising just how much they understand (mine are 11 and 7). And I love it because they know what to do now if I have a seizure. They know where to find the phones already, and can find my cell phone number easily to call their dad. And, they know where we keep one of the rescue medications. (I keep my old bottles so i can have a few of them, one goes in my pocket when we go out, another in my purse. And there are two in the house, one in my bedroom and one in the kitchen. They know that it's "normal", but to also call 911 if daddy isn't going to be home right away.
 
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