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Absence Seizures--What to tell others.

Tue, 11/10/2015 - 09:30

First a little background:  My daughter (10) has been through a variety of medications in the five years since she started having absence seizures.   She still has a number of absence seizures every day, but they are definitely reduced in length and frequency with her current medication (Depakote).      I started homeschooling her a couple of years ago after she continued to struggle more and more at school (academically and stamina-wise), and that has been a great change for her.  She's thriving academically at home and it's much easier for her to get the rest she needs, which helps reduce her seizures as well.   Overall she's well-adjusted and open about her seizures.      

My question:    My question today is what to tell other people about her seizures.  Since she still has seizures so regularly, I feel like coaches, friends' parents, etc. should be in the loop about them, but I also feel like telling people (especially a new friend) immediately puts up a  wall of her being different.    I've been surprised at how many otherwise nice people (the adults), just keep their kids at a distance socially after I tell them. And her soccer coach instantly  pulls her out of the game whenever he notices a seizure.     I always emphasize that the seizures are very short, not a big deal, and don't need any more care than to be watchful if she's near a street or body of water, but it still usually seems to alarm them.    The only reason  I tell  them in the first place is because I'm seeking understanding for my daughter, so if she stops talking in the middle of a sentence, or stops mid-dribble on a drive to the goal in a soccer game,  or drops something, that they're aware of what the issue is.    

So what do you do?  At what point do you tell others about a child's absence seizures?   How do you approach it with adults?    What about other children who interact with your child?    I'd love to hear your experiences.  

Comments

interesting question..... I

Submitted by just_joe on Tue, 2015-11-10 - 11:44
interesting question..... I say that because I am the epileptic.  You will get some posts in response to your question by parents. I would suggest you look in the get help section and look at the information there. They also have a 24/7 help line which you can call and get questions answered. Anybody can call with questions including your daughter and her friends.  The EFA has ways to get help to the schools and nurses and teachers in those schools. In some areas they also send people to them to discuss this issue. Do call the 24/7 help line since they cal answer your questions. What I did was different, People had to take me as I was and if they didn't it was their decission. In other words I wasn't going to change to suite their wanting. Each person is different and each seizure is different  I hope this helps Joe

Forgot the number is Our Toll

Submitted by just_joe on Tue, 2015-11-10 - 11:45
Forgot the number is Our Toll-Free Helpline: 1-800-332-1000

glad to see that he is being

Submitted by just_joe on Wed, 2015-11-11 - 11:52
glad to see that he is being taken off meds... Hope that goes well Joe

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