Key points 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 whānau routine and experiences should remain the same
- the main change is that your child may need to take regular medicine
What if my child has received a diagnosis of epilepsy?
It may take you, your child and whānau some time to absorb the information from your health prodessional. To begin with, some tamariki (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 to the lifestyle of your whānau. Generally, the routines and experiences of your whānau should remain the same. The main change is that your child may need to take regular medicine.
Although not specifically about epilepsy, you might find some helpful information about how to cope with your child's diagnosis.
Coping When Your Child Has A Diagnosis Of A Chronic Illness Or Disability
Learning about epilepsy is 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.
Encourage increasing independence in your child
Spending time and feeling at ease with friends is important for your child with epilepsy as it is with all tamariki.
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.
Relationships with the healthcare team
Work in partnership with your child’s healthcare team.
Good communication between you, your child, your health professional and your specialist is important for getting the best seizure control.
Informing others about your child's epilepsy
Keep whānau, friends and teachers well informed.
Watching your child have an epileptic seizure can be stressful for you. Your other tamariki may also be frightened at the time. Keep whānau, friends and teachers well informed about your child's epilepsy. It’s important that these people know what to do if they’re with your child during a seizure. Talking about epilepsy with the people involved in your child's life will improve their awareness and understanding.
Communicate with your child's 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 tamariki with epilepsy - it’s quite common. Tamariki with epilepsy should be treated the same as other tamariki. 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.
Supporting your child to take their epilepsy medicine regularly
Making sure your child takes their medicine every day will give them the best opportunity to become seizure free. It’s 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 your child to take their medicine.
Epilepsy and 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 shouldn’t harm them, but it's best to avoid repeated late nights.
Epilepsy and exercise
Don't let epilepsy limit your child's sports and exercise.
Encourage your child to join sports and activities. Epilepsy shouldn’t stop them from doing the things they enjoy.
When your child is swimming or bike riding, there are some things you can do to make it safer for them.
Keeping tamariki active and making sure they have a healthy, well-balanced diet is good for all tamariki, including those with epilepsy.
Safety For Children 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.
Keep a record of your child's seizures
It’s very helpful to keep an up to date record of your child's seizures.
More information and support
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. You can contact your local educator at 0800 37 45 37.
Acknowledgements
The content on this page has been developed and approved by the Paediatric Neurology Clinical Network, Paediatric Society New Zealand.
