Information for Parents

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Having a Child with Epilepsy

When your child is diagnosed with epilepsy, you will 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 questions are endless. The fear, grief and anger – and sometimes guilt, causes unbearable emotional anguish. You are not alone with these questions, in fact most parents experience these feelings at some stage. You are merely experiencing a normal reaction to being given a diagnosis that creates uncertainty.

Sometimes, diagnosis is a relief. Finally, you know what is wrong with your child and can face the future with some understanding of what to do and expect.

Fortunately, for most, this expectation can be that their child will have a reasonably normal life, with a few restrictions. Most seizures will respond to medication and it is quite possible your child will grow out of their seizures.
 
Who Should We Tell?

Once you’ve got a better understanding of your childs epilepsy, then you may need 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.

Other issues will be “How do I explain this to my child, my other children, my friends”? Who needs to know? How will this affect their future?

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

One of the most difficult areas parents speak about is not over-protecting their child. This is instinctive, 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 mistakes.

How parents react and respond greatly influences the child’s response, feelings and possible behaviours. Learning about epilepsy, talking openly to your child, accepting the epilepsy and treating your child as you treat any other child, will lead towards a positive effect on the child’s acceptance and self-esteem.
 
Talk to Someone

It’s best to discuss these concerns with someone who understands. Someone who will not judge you for your worrying about the life of someone you love. 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, KNOWLEDGE gives you CHOICE and CONTROL.
 
Questions you may have

There are countless questions & concerns that parents have expressed. You may want to add yours to the list, if so please email us.

  • Why us?
  • Is it normal to feel so angry?
  • Why isn’t there a cure?
  • Will my child be able to have a family?
  • Can they play sports?
  • Do I tell the teacher? Do I tell his friends?
  • How do I explain this to..?
  • How do I deal with their anger?
  • How do I deal with their refusal to take their medication?
  • What are the long term side-effects of the medication?
  • Can they drive?
  • Does it restrict their choice of employment?
  • Is it genetic? Will they outgrow it?
  • What can trigger a seizure?
  • What causes epilepsy?
  • What are the treatments?
  • Is there any alternative to taking medicines?
  • Can surgery help?
  • Do seizures cause brain damage?
  • Will it affect their learning?
  • Will their children have epilepsy?

Many of these questions can be directed to your specialist, or discussed with an educator from Epilepsy Action Australia.
 
If you are a parent with epilepsy

EAA factsheet – Seizure Smart – Parenting with epilepsy if you as a parent has epilepsy.

Storybooks to explain epilepsy to children
 
For more information:

EAA booklet When your child has epilepsy 

EAA factsheet – Seizure Smart – Epilepsy for Kids

Young Epilepsy video to explain epilepsy

Giving medications to children