Having a Child with Epilepsy
When your child is diagnosed with epilepsy, it can be a shock and you may experience a range of emotions. Be sure to discuss with your child’s doctor about their epilepsy type so you can start the learning process about how to help your child.
Seizures are unpredictable and very upsetting to see. We say “stay calm” but you see your child having a seizure and it is difficult to not feel panicked, anxious, upset and frightened.
You are probably asking “Why?…Why does my child have epilepsy?” “Why is this happening? ”
You are not alone with these questions, and most parents experience uncertain feelings. You are merely having a normal reaction to being given a diagnosis that creates uncertainty.
Sometimes, diagnosis can be a relief especially if its taken a long time. You finally know what is happening with your child and can face the future with some understanding of what to do and expect.
Who Should We Tell?
You should consider telling the people involved in your child’s daily care – for example, child care or school staff and teachers – that your child has epilepsy. They need to understand what this means, as well as how to manage a seizure if it happens.
Once you’ve got a better understanding of your childs epilepsy, then you may feel more prepared to explain things to others. There are a number of resources available that can help you explain epilepsy to a child or other people.
This may be useful for your childs teachers – Information for teachers as a start, but they should also consider becoming a Seizure Smart School and have a Seizure Management Plan and have relevant staff undertake training to raise epilepsy awareness and understand what to look out for and what to do.
Talking to your child
Speak with your child and see what he/she wants to know. Work through things slowly or as they arise. See the factsheet for children – Epilepsy and Seizures
For younger children watch Ben and Sunitas big day out
Jumo Health have developed two digital resources about epilepsy for children aged 8-12 years
E-quip: An Epilepsy Resource for Youth: Developed for teenagers and young adults, this resource covers topics, such as dating, depression, study and work matters and has a number of videos featuring young Australians discussing their personal experiences.
Our first aid video animations for children are also useful to watch (there are other first aid animations for adults also available.
Protecting Your Child
Wanting to protect your child is natural, and some parents find it difficult not to over-protect their child particularly when there are additional needs to consider. Although you need to consider additional safety issues if your childs seizures continue, it is important to let children lead as normal a life as possible and sometimes learn from experience and mistakes.
How parents react and respond can influence the child’s feelings and behaviour. Keep open communication with your child and answer any questions about epilepsy they may have. Accepting epilepsy and treating your child as you treat your other children, will lead towards a positive effect on the child’s acceptance and self-esteem.
Epilepsy is more than seizures
While seizure management and safety are often prioritised, the effects of epilepsy extend way beyond seizures, and can impact life in many ways, and can also affect thinking and learning, memory, mood and concentration, all of which may have an impact on the child’s school experience. Epilepsy Action have some tools and resources which may help you understand this and how to manage or seek further help.
We have two free online courses for school aged children:
- Epilepsy Awareness ages 4-7 years
- Epilepsy Awareness ages 7-12 years
- Strong Foundations – designed to help parents with a child attending mainstream school identify any epilepsy-related learning challenges. It aims to give parents ideas about how to support their child to achieve their potential.
Further online tools and information
What do you wish people knew about epilepsy?