Me and my mum

A story to help parents explain their epilepsy

Introduction

This information is for anyone with epilepsy who is a parent or cares for a young child. When you decide to tell your children about your epilepsy is your decision. However, from the many parents and carers that we speak to on our Epilepsy Helpline, we know that lots of you would like some information to help you know what and how to tell your child.

Perhaps most importantly, children need to know what epilepsy is and that it’s nothing to be afraid of. They also need to know what they should do if you have a seizure.

This is a story about a young boy whose mother has epilepsy. You can either read this story to your child, or use some of the information about epilepsy in the story to help explain your epilepsy in your own words.

The story begins

This is a story about me and my mum. We live with my dad and my big sister Jess. Jess is 17 and she goes to college. We’ve got two dogs, called Rascal and Tiny. Every day after school, me and my mum take Rascal and Tiny for a walk in the park. Sometimes Jess comes too.

Mum starts feeling funny

One day me and Mum were in the park with Rascal and Tiny. We were throwing a stick for them to fetch.  Jess was on the other side of the park, watching her boyfriend Ali play football.

Then Mum said she was feeling a bit funny.

“I think I’ll go and sit down on the bench,” she said.

I carried on throwing the stick for Rascal and Tiny. Then I threw the stick too high and it got caught in a tree. I couldn’t reach it, so I went to get Mum.

Mum has a seizure

But when I looked round, Mum wasn’t on the bench, she was lying on the ground. I ran over to her. Her arms and legs were jerking and she wasn’t breathing properly.

“Mum, what’s wrong? Mum!” I said. But she didn’t answer me.

I was really scared, but I ran and got Jess.

“Something’s wrong with Mum,” I said.

Jess ran over to Mum and Ali came too. Ali took off his sweatshirt and put it under Mum’s head.

“I think your Mum is having an epileptic seizure,” said Ali. “My cousin Ben has epilepsy. Is it the first time your Mum’s had a seizure?”

Me and Jess said yes, it had never happened before.

“Then we should call an ambulance,” said Ali.

Ali and Jess take charge

So Jess used her mobile phone to call an ambulance. Then she phoned Dad and told him to come over to the park.

Soon Mum stopped jerking and her breathing went back to normal. Ali carefully put Mum in a special position on her side. Ali said that this was called the recovery position.

After a while, Mum started to move and she looked up at us. She was very confused and her mouth was bleeding because she’d bitten her tongue.

“What happened?” she said. “The last thing I remember is walking over to the bench.”

“We think you might have had an epileptic seizure,” said Ali. “Jess has called an ambulance and they’ll be here soon. Have you ever had a seizure before?”

“No, never,” said Mum.

The ambulance arrives

When the ambulance came, Dad went with Mum to the hospital. Jess and Ali took me home because the dogs needed their dinner. Then Ali made us some dinner too. It was fish fingers and spaghetti rings, which is my favourite. But I couldn’t eat it all because I was worried about Mum.

Ali explains about his cousin

Ali told us about his cousin, Ben.

“Ben’s had epilepsy for a couple of years,” he said.

“What is epilepsy?” I asked.

“It’s to do with your brain,” said Ali. “Something goes wrong for a few minutes and then it’s okay again”.

“How does your brain go wrong?” I asked.

“Your brain sends messages to the rest of your body to tell it what to do. Different bits of your brain work different bits of your body. If you’ve got epilepsy, these messages get a bit mixed up sometimes and that’s why you have seizures,” said Ali.

Mum comes home

Mum was really tired when she came home. Before she went to bed she gave me a big hug.

“I don’t really remember what happened, but it must have been scary for you. Well done for being so brave,” she said.

Mum had lots of leaflets about seizures and epilepsy from the hospital. They said she’d need to come back in a few weeks for tests to help find out why the seizure happened. Dad showed me some information about first aid, so I’d know what to do if it happened again.

Walking to school

Because of the seizure, Mum wasn’t allowed to drive. The hospital said that she would be able to drive again if she didn’t have any more seizures for a whole year. That meant that we had to walk to school and back, but I didn’t mind. Mum brought Rascal and Tiny with her when she came to walk me home after school.

Knowing what to do

One day when we were walking home, it happened again – Mum had another seizure. This time I knew what to do. I tied the dog’s leads to a lamp post. Then I took my coat off and put it under her head. A woman on the other side of the road ran over.

“What’s wrong with her?” she said. “Is she drunk?”

“No!” I said. “She’s having a seizure.”

“Oh,” she said. “Should we call an ambulance?”

“No,” I said. “We just need to stay with her. She should be okay in a few minutes. We don’t need to call an ambulance unless it lasts longer than five minutes, or she hurts herself badly.”

Soon the seizure stopped and I got the woman to help me put Mum in the recovery position. When Mum felt better, she got up.

Mum felt a bit wobbly but she said she was okay to walk home. We were nearly home anyway so it didn’t take long.  I told Dad what had happened and we wrote it all down in the special seizure diary that the hospital had given Mum.

The tests

A few weeks later, Mum went to the hospital to have an EEG test. EEG stands for electroencephalogram, which is a very long word! I asked if I could go with her.

When we got to the hospital, the doctor measured Mum’s head to see how big it was. Then he drew some little marks on Mum’s head, to show where to put the coloured EEG wires. The EEG wires had little round pads on the end of them.

Then the doctor put the pads on Mum’s head. He used something that looked like jelly to keep the wires on her head, while she had her EEG. The doctor said that sometimes people have a cap put on their head to hold the wires.

“It doesn’t hurt,” said Mum. “It just feels a bit weird!”

The wires went from the pads on Mum’s head into a machine.

“Sit back and relax,” said the doctor. “And try to stay as still as you can.”

The machine drew a pattern of squiggly lines.

“Take some big breaths,” said the doctor.

“Now I want you to open and close your eyes. Now look at these flashing lights.”

The whole test only took about half an hour. The doctor said Mum would get the results in a couple of weeks.

“The EEG won’t definitely say if you have epilepsy or not, but it should give us some useful information,” he said.

Visiting the doctor again

A couple of weeks later, Mum went to see the neurologist at the epilepsy clinic. A neurologist is a special doctor who knows lots about brains and nerves. I didn’t go with Mum this time, but Dad did. Before the appointment dad got me to tell him exactly what happened both times Mum had the seizures. He wrote it all down, so he could tell the neurologist. He also took the seizure diary with him.

The neurologist asked Mum and Dad what happened when she had her seizures. He looked at Mum’s EEG test results and the seizure diary. The neurologist decided that Mum did have epilepsy. 

Getting the medicine

The neurologist gave Mum some special medicine to help stop the seizures happening.

“You need to take this medicine every day,” he said. “This medicine can’t cure epilepsy, but it can help stop you having seizures.” said the neurologist. “If this one doesn’t work, there are other medicines we can try. The medicine is also known as anti-epileptic drugs.”

Why did it happen?

Being told she had epilepsy was a big shock for Mum, but she was relieved to know why she’d had the seizures. The neurologist couldn’t find what had caused Mum to have epilepsy, but he said that was quite normal. For lots of people, doctors can’t find what’s caused their epilepsy. Epilepsy can happen to anyone at any time. Sometimes it just comes out of nowhere.

Meeting the special nurse

Mum had a few more seizures and went back to the epilepsy clinic to talk to the neurologist again. I went with her to see the Sapphire Nurse, who is a kind of epilepsy nurse. Her name was Janine and she gave my Mum a card to keep in her pocket. There was a space where she could write “I have epilepsy”, and my dad’s mobile phone number in case of an emergency.

At first it was strange to think of my mum having epilepsy. She’d looked after me lots of times when I’d been ill, but I’d never had to look after her. Knowing what to do if Mum has a seizure made me feel really grown up.

Setting up a local branch

Mum decided to help set up a local branch of Epilepsy Action. Now we know lots of people with epilepsy that live near us. Sometimes me and Mum do sponsored walks for Epilepsy Action and Rascal and Tiny come too. I even did a talk about epilepsy for my class at school. I want everyone to know more about epilepsy and that it’s nothing to be scared of.

Thank you for reading my story. I hope you enjoyed it.

The end.

If you want to know more about epilepsy, you can call the Epilepsy Helpline, freephone 0808 800 5050 (UK) Or you can email us at helpline@epilepsy.org.uk.

You might also like to look at our children’s website at kids.epilepsy.org.uk

For more resources for children, visit our online shop

In particular, you may like these books:

“My doctor says I have epilepsy: a child’s journey”
“That’s what friends are for”
“What’s up with Wendy”

You can order any of these books from Epilepsy Action.