Having a Child with Epilepsy
When your child is diagnosed with epilepsy, you may experience a range of emotions. An epilepsy diagnosis may be confusing — there are many different types of epilepsy. Be sure to discuss with your child’s doctor about their particular circumstances, to start the learning process about how to help your child.
When a child has epilepsy, you feel there is less control over what happens to them – because seizures are unpredictable. We say “stay calm” but you see your child having a seizure and it is difficult to not feel anxious, upset and frightened.
You are probably asking “Why?…Why does my child have epilepsy?” “Why has this happening to us? ” What have we done to deserve this?”
The fear, grief and anger – and sometimes guilt, and many other emotions. There are many questions. You are not alone with these questions, and most parents experience these feelings at some stage. You are merely having a normal reaction to being given a diagnosis that creates uncertainty.
Sometimes, diagnosis can be a relief. Finally, you 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?
How do I explain this to my child, my other children, my friends? Who needs to know? How will this affect their future?
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 the condition to a child or other people.
Try not to answer all your questions at once. Speak with your child and see what he/she may want. Work through things slowly or as they arise.
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. It is instinctive, to want to protect one’s children from ridicule, potential harm, or from taking risks. Yet, children take risks every day, as a normal part of growing up, a satisfying of their curiosity. It is important to let them lead as normal a life as possible and sometimes learn from experience and mistakes.
How parents react and respond can influence the child’s response, feelings and behaviour. Keep open communication with your child and answer any questions about the 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.
Talk to Someone
It’s best to discuss concerns with someone who understands. Someone who will not judge you for your worrying about the life of someone you love, small or big. This may be your doctor, a friend, a counsellor or one of our nurse educators.
The message here is TALK about it, LEARN as much as you can, as KNOWLEDGE gives you CHOICE and CONTROL.
For more information:
EAA booklet When your child has epilepsy
Young Epilepsy video to explain epilepsy
If you are a parent with epilepsy
EAA factsheet – Seizure Smart – Parenting with epilepsy if you as a parent has epilepsy.