Living With Epilepsy

Living With Epilepsy

If your child has received a diagnosis of epilepsy, they need understanding and you will all need time to adjust. Generally, your family routines and experiences should remain the same. The main change is that your child will need to take regular medicine and follow some safety advice.

Key points to remember about living with epilepsy

  • learn about your child's epilepsy so you feel confident and well informed - your child will take their lead from you
  • your child needs understanding and time to adjust to their epilepsy
  • generally, your family routines and experiences should remain the same
  • the main change is that your child will need to take regular medicine

What if my child has received a diagnosis of epilepsy?

Learn about your child's epilepsy so you feel confident and well informed - your child will take their lead from you.

It may take you, your child and family/whānau some time to absorb the information from your doctor. To begin with, some children may be afraid to do things they normally do such as going to school or even going to sleep. Your child needs understanding and time to adjust to their epilepsy.

You may have to make some minor adjustments in your family lifestyle. Generally, your family routines and experiences should remain the same. The main change is that your child will need to take regular medicine.

Although not specifically about epilepsy, you might find some helpful information in Coping when your child has a diagnosis of a chronic illness or disability.

Is learning about epilepsy in children important?

Learn about your child's epilepsy so you feel confident and well informed. Your child will take their lead from you. Your confidence helps their confidence and self-esteem.

Encourage your child to talk about their epilepsy and any fears they might have.

Is it important to encourage increasing independence in my child with epilepsy?

Spending time and feeling at ease with friends is important for your child with epilepsy as it is with all children.

As your child gets older, encourage them to gradually become responsible for taking their own medicine. You will still need to check they are taking the medicine correctly.

When my child has epilepsy, what relationship should I have with the healthcare team?

Work in partnership with your healthcare team.

Good communication between you, your child, your family doctor and specialist is important for getting the best seizure control.

What about informing others about my child's epilepsy?

Keep family members, teachers and friends well informed.

Watching your child have an epileptic seizure can be stressful for you. Your other children may also be frightened at the time. Keep family members, teachers and friends well informed about your child's epilepsy. It is important that these people know what to do if they are there when your child has a seizure. Talking about epilepsy with the people involved in your child's life will improve their awareness and understanding.

When my child has epilepsy, how should I communicate with their school?

Talk to your child's teachers about epilepsy and what to do if your child has a seizure.

Going to school for your child should be the same as for anybody else. Talk to your child's teachers about epilepsy and what to do if your child has a seizure. Most schools will have other children with epilepsy as it is quite common. Children with epilepsy should be treated the same as other children. The only difference is extra supervision during activities such as swimming.

Encourage your child to be as independent as possible.

Ask your child's teacher to keep a record of seizures happening during class.

Should I make sure my child takes their epilepsy medicine regularly?

Making sure your child takes their medicine every day will give them the best opportunity to become seizure free. It is a good idea to use a weekly medicine box as this makes it really easy to tell if you have missed a dose by mistake. You can set smartphone alarms to remind you and your child to take their medicine.

When my child has epilepsy, how important is sleep?

Make sure your child gets enough sleep.

Your child might have more seizures if they are tired and don't get enough sleep. The odd late night should do no harm but it's best to avoid repeated late nights.

What about exercise for my child with epilepsy?

Don't let epilepsy limit your child's sports and exercise.

Encourage your child to join sports and activities. Epilepsy should not limit their participation in things they enjoy.

When your child is swimming or bike riding, there are some things you can do to make it safer for them. See Safety for children with epilepsy.

Keeping children active and making sure they have a healthy, well-balanced diet is good for all children including those with epilepsy.

Is my child more likely to have a seizure when they're sick?

Be alert for seizures when your child is sick - there is a higher chance that they will have a seizure then.

What record do I need to keep of my child's seizures?

It is very helpful to keep an up to date record of your child's seizures. See Keeping a record of seizures.

Who can I contact for more information about epilepsy or for help?

Call Epilepsy New Zealand for support - 0800 37 45 37.

You or your child might find it helps to talk to other parents and children who have learned to live with epilepsy in their family.

Epilepsy New Zealand can help with information and support. They can provide contact with other families of children who also have epilepsy. Epilepsy New Zealand has epilepsy educators who can provide more information for you, your child, other family members or your child's teacher.

The content on this page has been developed and approved by the Paediatric Neurology Clinical Network, Paediatric Society New Zealand.

This page last reviewed 23 July 2018.
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