Samman Association

Parent’s Guide

If a child has epilepsy, a parent or caregiver has to explain to the child what the illness is about in a way that s/he can understand. The following narration is meant to help the parent / caregiver do this.

“Everyone falls ill at some time or the other. Last month your ‘didi’ was in bed due to a fever, last week Nani could not get up from the bed due to a bad backache etc. (explain recent illnesses in the family to your child). We called the doctor who gave medicines which made them feel better and ‘didi’ was able to go back to school……….

You know you take medicines everyday, one in the morning and one in the night even though you don’t seem sick, laid up in bed like your ‘didi’ or ‘nani’. This is because what happens to you happens only sometimes (explain what happens which could be any of the following): You know sometimes

  • Your arm / hand / leg / foot may shake without you wanting it to shake.
  • Things seem strange to you for a moment: you may hear sounds or see things
  • You could fall down, get stiff and shake all over for one or two minutes
  • You could move around as if in a daze or half asleep.
  • You stop and stare blankly for just a moment

When this stops happening to you for 2-3 years, the doctor says s/he will stop the medicines. But now you have to take your medicines so that this stops happening to you.

The doctor says the name for this kind of a disorder is ‘Epilepsy’. I (the person who is explaining the disorder to the child) myself wanted to know why this happened to you and the doctor told me that this could happen to anyone. In fact thousands and thousands of people have had this very same disorder before you, thousands and thousands of people have it today. These people are working and have kids too and are living happy lives. Some of them are school children like you.

Seizures start in the brain and anyone having a brain could get epilepsy! The brain consists of tiny cells that send signals to each other, so fast, you cannot imagine. Most of the time this ‘signal sending’ or messaging works well without you even knowing it. For example messages from the brain are sent to your body when you want to jump, when you want to study, when you want to eat, when you want to do just about anything. But sometimes, for a very short time this messaging gets messed up and that is when a seizure or fit happens.

In spite of having epilepsy, you can enjoy life just like your schoolmates. You can take part in sports, you can study just as well, you can do everything you were doing before epilepsy. However since you are still having seizures or fits you must never remove your life jacket when in the swimming pool. When cycling too, you can do so if we are around and you wear your helmet and protective gear.

You have to know these facts about epilepsy, so that you are able to explain it to your friends in school, who may question you about it.

  1. You cannot get epilepsy from someone else – it is not contagious.
  2. You will not hurt anyone else during a seizure
  3. Seeing something that is not there or hearing a funny noise does not mean you are mad or crazy. These things are caused by little seizures in the brain and stops as soon as the seizure stops.
  4. You cannot swallow your tongue during a seizure, it is attached to the bottom of your mouth.
  5. No one should put anything near your nose or in your mouth during a seizure.

What your friends should do for you if you get a seizure when they are around:

  1. Move things out of the way.
  2. Put something soft under your head if you’re on the floor.
  3. Turn you on one side.
  4. Be a friend when you wake up and don’t be scared.

I have explained all this to your class teacher. I also told her that may famous people like the international cricketer Jonty Rhodes and the Olympic Cyclist Marion Clignet (picture below) have epilepsy.”

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