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Epilepsy Is A Family Affair

Parents of Children with Epilepsy | Parents Who Have Epilepsy |
Siblings
| Grandparents | Friends & Caregivers

The person with seizures isn't the only one affected by epilepsy. Studies show that the way parents feel about epilepsy has a major effect on how the child feels about having seizures and how he or she copes with their effects. Families that are open and accepting, and help the child build on strengths, can make a positive difference in the child's life.

Siblings and other relatives are also important contributors to the family's strength and ability to handle seizures and the reactions of others to a family member's epilepsy.

Stacey

Stacey and Sirena
Home: Nebraska

Q: When did Sirena begin having seizures?

A: Late Winter 2004 is when we first knew something was wrong and she was diagnosed with epilepsy.


Q: What was your first response when you were told that she had epilepsy?

A: Actually, we were relieved because the entire previous year she had been misdiagnosed with Acid Reflux, Irritable Bowl Syndrome and migraines. It was just nice to know what we were really dealing with.


Q: What is the most challenging thing for your family about having a child with epilepsy?

A: Her education. Getting the school on board with all the necessary changes with her educational needs has been an ongoing challenge.


Q: What advice do you have for other families who have a child with epilepsy?

A: Talk to other parents. Find out what worked for them, both at school, with meds, at home, etc.

Go to support group meetings and find others who know what you are going through and get involved.

One of the down sides about epilepsy is you feel out of control, so take control of things that you can like being an advocate and encouraging education on epilepsy.

Parents of Children with Seizures

Emphasize the positive; praise success.

Build on things your child can do.

Encourage a special hobby or lessons to acquire a special skill.

Discuss seizures and epilepsy openly with your child and answer her questions.

Encourage your child to have as much social contact with other children as possible.

Try not to make your child's seizures a reason not to do things the family would otherwise do, or fail to discipline the child on that account.

Set aside time to do something special with your other children.

Take some time for yourself without feeling guilty about it.


Parents Who Have Epilepsy

If you have a baby or small child and your seizures are not well-controlled:

  • Use a baby carrier or stroller around the house if you fear having seizures.
  • Do not hold your child while you're cooking.
  • Sit down to feed your baby.
  • Don't bathe your child without someone else in the house.
  • Consider changing your baby's diapers on a changing pad on the floor rather than on a table.

If you have older children:

  • Teach then how and when to call 911.
  • Teach then how to respond if you have a seizure.
  • Encourage your child to ask questions, and answer them honestly.

Siblings

Remember that even though your sibling with epilepsy may require more attention, you are an equally important part of your family.

Make it your business to learn all you can about epilepsy, and teach your friends.

Talk to your parents about spending time just with them.

Pursue your own interests and hobbies.


Grandparents

Learn as much as you can about epilepsy. Understand that what was "common wisdom" in caring for someone with seizures when you were growing up may have changed.

Learn what to do - and what not to do - if your grandchild has a seizure in your presence. Never put anything in the mouth of someone who is having a seizure.

Spend time with the other children in the family.

Encourage the child with epilepsy to participate fully in family and school life.


Friends & Caregivers

Learn about seizures and how to respond to them.

Be an advocate. If your friend has a seizure around other people, explain to them what is happening and how they can help.

Understand that the last thing your friend wants is to be treated differently. Seizures are brief episodes before and after which life continues normally.

Remember that language matters. Don't define your friend in terms of his seizures. He is not an epileptic. He is a person who has epilepsy.

Copyright © 2010 Epilepsy Foundation North/Central Illinois, Iowa, Nebraska. All rights reserved.
An Independently Incorporated Affiliate of the Epilepsy Foundation of America