If your sister has epilepsy you might have lots of questions. Knowing the answers to some of these questions may help you feel better and more able to help your sister. You are not the only one with a brother or sister with epilepsy. About 51,000 children under 16 in the UK have epilepsy.
What is epilepsy?
Epilepsy is when something unusual happens in your brain. Your brain is like a very powerful computer. It controls everything you do. When your brain starts sending too many electrical messages, this can make different things happen to your body. These things have lots of names, like fits, seizures, funny turns and attacks. Here at Epilepsy Action we call them seizures.
Epilepsy is a bit different for everyone. Your sister may be able to tell you how it feels when she has a seizure.
Some children can have seizures every day. And other children might only have them now and then.
If your sister takes epilepsy medicine, it might stop all her seizures.
You can’t catch epilepsy from anyone.
Lots of children and grown-ups have epilepsy. So there may be other children in your school with it.
Why does my sister have epilepsy?
The doctor can only sometimes tell why someone has epilepsy. This could be if:
- They've banged their head badly or
- They’ve had a bad infection when they were a baby or
- Other people in their family have epilepsy
Or they might not know at all.
It certainly isn't because of anything that the person has or hasn’t done. In fact thousands of people in the country and millions of people in the world have epilepsy. Even animals can have epilepsy!
Will my sister get better?
If the doctor thinks your sister has epilepsy, they’ll probably want her to take epilepsy medicine. Sometimes they may have to try a few different medicines before they get the right one for your sister.
Some children can have an operation to help control their epilepsy. And some children go on a special diet to try and stop their seizures.
Some children grow out of their epilepsy. So then the doctor says they can stop taking their epilepsy medicine. Others have to carry on with the medicine to make sure their seizures don’t come back.
Is epilepsy dangerous?
One of the tricky things about epilepsy is that nobody knows when a person might have another seizure.
So it's really important that you and the grown-ups around your sister know the best ways for her to keep safe.
They’ll probably say climbing, or having a bath aren’t safe while your sister is still having seizures. They’ll also tell her to be extra careful when cycling and always wear a helmet. But it’s always good to wear a helmet anyway, isn’t it?
So there are some things that aren’t safe. But you can definitely still have lots of fun together!
Is my sister different now she has epilepsy?
Some people, like parents, teachers and classmates may treat your sister a bit differently when she first starts having seizures. Even you may treat her differently. This is probably because none of you know very much about epilepsy. When you understand better you’ll see she is just the same person as before. This is why it’s great that you’re reading this!
What should I do if my sister has a seizure?
If your sister has a seizure and falls down, get a grown-up to help, as quickly as you can. If you can’t find a grown up straight away, here are some things you can do:
- Keep as calm as you can
- Put something soft under her head, like a pillow, cushion or coat
- When your sister stops moving around, roll her onto her side, if that is easy for you to do. This can help her to breathe
- Find a grown up as soon as you can
- Don’t put anything in your sister’s mouth
- Don’t give her anything to eat or drink
If a grown up wants to know more about first aid for seizures, tell them about Epilepsy Action’s website. They will find lots of information about first aid.
Ask your parent, or another adult who looks after you, to write a plan about how to help your sister during a seizure, and put it on the fridge door.
Practise with your parent what you need to do if your sister has a seizure. This will help you to feel more confident about it.
Is it normal to feel angry/worried/sad about my sister?
Your sister will have lots of feelings about having epilepsy. Your parents will have lots of feelings about your sister having epilepsy. You will probably have lots of feeling too.
Here are some you may have:
- You may feel frightened when your sister has a seizure
- You may feel worried that your sister is going to have a seizure
- You may feel worried about what to do if your sister has a seizure
- You may feel sad or even angry that your sister has epilepsy
- You may feel fed up that your sister is getting more attention from your parents
It’s really normal to feel these things. The important thing is to find someone to talk to about them. If your mum or dad are busy, here are some other people you could talk to:
- Your other sisters and brothers
- Your gran or grandad
- Your teacher
- Your friends
- Your friend’s mum or dad
Maybe you could think of other people too.
What can I do if I feel angry?
You may feel
- It’s not fair that your sister has epilepsy
- It’s not fair that your sister gets more attention than you do
- It’s not fair that a plan has to change because your sister has had a seizure
It‘s okay to feel these things. But it’s not okay to say nasty things or hit people. If you’re feeling angry a lot, try and find an adult you can talk to. They may be able to help.
How can I help my sister?
The best way to help you and your sister is to learn about epilepsy. So you are already being a big help by reading this webpage. If you want to learn even more you can read the answers to our Big Questions.
Other than that, just carry on having fun together. Oh and maybe give her a few more hugs?
What can I do if I feel like I have to look after my sister?
There might be times that you look after your sister. This might be:
- If your parent or another grown up is busy, and has asked you to make sure your sister is safe
- At school – you might feel that you have to look out for her in case she has a seizure
- At night - if you sleep in the same bedroom you might be listening out for your sister
If you think you’re having to look after your sister too much, ask your parent if other grown-ups can look after your sister instead.
If you do a lot of caring for your sister, you might be called a young carer. As a young carer, you might not have enough time to do your homework or have time for yourself. The Children’s Society have information and support for young carers. Your teacher may be able to help you get in touch with them.
Is there a group that can help me?
If you look after your sister a lot, there are some groups you can get help from.
Young sibs: https://www.youngsibs.org.uk/
They are for people just like you who have a brother or sister who has a health condition. They can help by listening, giving information and making it possible for you to meet other people like you.
The Chilren’s Society: https://www.childrenssociety.org.uk/information/young-people/young-carers
This organisation offers support to young people who have to spend a lot of time looking after a brother or sister.
This is a phone number any child can ring to talk to someone about how they’re feeling and what’s happening for them, especially if they’re worried about something. The number is 0800 1111. It doesn’t cost anything.
Now you’ve got to the end of this information (well done, by the way) why don’t you test your parents to see how much they know.
See our free classroom resources can be used on desktop computers, tablets or interactive whiteboards.
This information has been produced under the terms of Epilepsy Action's information quality standards.
- Updated October 2020To be reviewed October 2023