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When Your Child has Epilepsy

separator When you find out your child has epilepsy, one of the first things you need to do is inform the people in the child’s life. What are some good guidelines for doing this?

Telling children
Children need to know if they have epilepsy. There was a time when there was a stigma attached to having epilepsy. Parent sometimes hid the truth from their children, and never told them they had epilepsy. But you can’t protect your child from the truth. By about age three, children are ready to know if they have epilepsy. You’ll need to keep the words simple for children this young. For older children, you can adjust your description to their ability to understand, and answer their questions honestly. Your doctor can give you advice about what to say.

Telling family members
Any relatives who take care of your child need to know about epilepsy. It’s that simple. You know your family members best, so you know best how much to tell. If a relative sees a child infrequently, it’s probably not important to say much about the epilepsy, but keep in mind that it’s nearly impossible to keep secrets within a family. Word always seems to get around. Being honest with everyone will probably make things easier for you in the long run.

Remember that you need to have confidence in the way you’re handling your child’s epilepsy. Family members may want to give advice, but you’re the one who makes the decisions.

The school environment
Since your child spends so much time at school, it’s important for teachers and the school nurse to know about the epilepsy. Teachers should know how to recognize a seizure, and how to administer first aid. They should also know about side effects of any medications your child takes.

While you want teachers to be aware of the epilepsy, you also don’t want them to single your child out. The other children will take their cues from the teacher, so a teacher who is calm during a seizure and matter-of-fact about the condition will be a good role model for the rest of the class.

If your child has frequent daytime seizures, the other kids in class should probably know how to recognize seizures and what to do when one is occurring.

Children’s friends and friends’ parents
When children are very young, until about age 8, you’ll need to tell your child’s friends and their parents about epilepsy, usually without your child present. Generally, when a child spends a lot of time at a friend’s house, the friends and parents will need to know what to do in the event of a seizure.

By about age 8 or 9, children should be involved in your discussions with friends about the epilepsy. They should have some input into what you way and how you say it. Don’t be surprised if your child doesn’t want to tell friends. Kids hate to be thought of as “different,” so there may be some struggle.

Be sure to talk with your doctor if you have any questions or need advice about talking with friends and loved ones about your child’s epilepsy.

O. Devinsky. Epilepsy Patient & Family Guide. F.A. Davis Company, Philadelphia, Pennsylvania, 2002; The Epilepsy Foundation.
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