My sibling has 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 brother or sister may be able to tell you how it feels when they has a seizure.

Some children can have seizures every day. And other children might only have them now and then.

If your brother/sister takes epilepsy medicine, it might stop all his 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.

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!

If the doctor thinks your sibling has epilepsy, they’ll probably want them to take epilepsy medicine. Sometimes they may have to try a few different medicines before they get the right one for them.

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.

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 sibling knows the best ways for them to keep safe.

They’ll probably say climbing, or having a bath aren’t safe while your brother/sister is still having seizures. They’ll also tell them 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!

See what Jack does to stay safe

Some people, like parents, teachers and classmates may treat your sibling a bit differently when they first start having seizures.

Even you may treat them differently. This is probably because none of you know very much about epilepsy. When you understand better you’ll see they are just the same person as before. This is why it’s great that you’re reading this!

See what Anna does to help herself feel better

If your brother/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.

Do:

1. Keep as calm as you can
2. Put something soft under their head, like a pillow, cushion or coat
3. When they stop moving around, roll them onto their side, if that is easy for you to do. This can help them to breathe
4. Find a grown up as soon as you can

Don’t:

1. Don’t put anything in their mouth
2. Don’t give them 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 sibling during a seizure, and put it on the fridge door.

Practise with your parent what you need to do if your brother/sister has a seizure.

This will help you to feel more confident about it.

Your sibling will have lots of feelings about having epilepsy. Your parents will have lots of feelings about your brother/sister having epilepsy. You will probably have lots of feelings too.

Here are some you may have:

• You may feel frightened when they have a seizure
• You may feel worried that they are going to have a seizure
• You may feel worried about what to do if your sibling has a seizure
• You may feel sad or even angry that they have epilepsy
• You may feel fed up that they are 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.

You may feel:

• It’s not fair that your sibling has epilepsy
• It’s not fair that they get more attention than you do
• It’s not fair that a plan has to change because your brother 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.

The best way to help you and your brother or 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 him a few more hugs?

There might be times that you look after your brother or sister.

This might be:

• If your parent or another grown up is busy, and has asked you to make sure they are safe
• At school – you might feel that you have to look out for them in case they have a seizure
• At night – if you sleep in the same bedroom you might be listening out for them

If you think you’re having to look after your brother or sister too much, ask your parent if other grown-ups can look after them instead.

If you do a lot of caring for your brother or 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.

If you look after your sibling 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 and giving information.

The Children’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.

Childline: https://www.childline.org.uk/

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.