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What is epilepsy? Causes, Symptoms and Diagnosis | Epilepsy Action

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Epilepsy is a neurological condition affecting 1 in 100 people in the UK. Find out what causes epilepsy, what the symptoms are, and how it is diagnosed and treated.

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Seizures can put you at risk of accidents and injury, so it's a good idea to think about safety.

You'll often find you can still do things you enjoy, with some simple measures to reduce risk.

This page gives advice on how to stay safe inside and outside the home, and do your own safety checks.

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Seizures can put you at risk of accidents and injury, so it's a good idea to think about safety. You'll often find you can still do things you enjoy, with some simple measures to reduce risk. This page gives advice on how to stay safe inside and outside the home, and do your own safety checks.

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On this page, find out what to do if you see someone having a seizure. There is information about the different seizure types and how you can help keep someone safe by following some simple steps.

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Find out about different seizure types and helping with first aid for seizures. How to keep someone safe by following some simple steps.

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Our team consists of our Consultant Paediatrician with Epilepsy Interest, Epilepsy Nurse Specialist and Physician Associate

Dr Shyam Mariguddi Consultant Paediatrician with Epilepsy Interest

Hayley Murphy Paediatric Epilepsy Nurse Specialist

Andrew Bowness Paediatric Physician Associate

To make contact with the team call 01695 656355 (voicemail facility available) or email us on soh-tr.childrens-epilepsy@merseywestlancs.nhs.uk

It can take up to 5 working days to respond to your call or email.

If you would like to send videos of episodes please send them to our WhatsApp on 07721 219608 with your child's name and DOB.

Please note we are not an emergency service and we do not work bank holidays or weekends.

It is our role to support you and your family with your diagnosis of Epilepsy. If you come to clinic for an appointment you will be seen by our colleagues in the Children's Outpatient Department first. They will measure your height and weigh you prior to being seen by ourselves.

We ask lots of questions which help to build a picture about your Epilepsy. It would be helpful if you or your parent/carer could bring along any videos of your seizures and a seizure diary.

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The Epilepsy team cannot give advice or recommendations on alarms and monitors. However we are able to sign post you to the information and guidance on Epilepsy Action.

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Sensors, bed monitors and seizure-alert services. How to choose a seizure alert system. Can I get a free monitor or get help paying for one?

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Night Time Monitoring - further information

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Night Time Monitoring - further information

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Having a seizure in a wheelchair - Epilepsy Action

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General advice about how to help someone who is having a seizure in a wheelchair. Most people will have their own individual care plan.

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Roald Dahl is a UK wide charity providing specialist nurses and support for children with complex conditions.

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Roald Dahl is a UK wide charity providing specialist nurses and support for children with complex conditions.

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Marvellous Family Support Service

The Marvellous Family Support Service helps families with a Roald Dahl Nurse access financial and emotional support.

Roald Dahl's Marvellous Children's Charity

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Roald Dahl's Marvellous Children's Charity

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Roald Dahl’s Marvellous Children’s Charity

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The Marvellous Family Support Service helps families with a Roald Dahl Nurse access financial and emotional support.

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Join the #UnderstandMyEpilepsy campaign and help ensure young people with epilepsy get the support they need to be safe and included at school.

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Information on SUDEP, Sudden Unexpected Death in Epilepsy

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Information on SUDEP, Sudden Unexpected Death in Epilepsy

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Learn about SUDEP, the risks to children and young people with epilepsy, and how to reduce them.

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Epilepsy Action support for people with epilepsy. Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy.

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Discover a vibrant online community at Young Epilepsy Youth Club. Boost confidence, make lasting friendships, and thrive with fun activities. Join now for a UK-wide connection and positive, empowering experiences!

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Seizure Triggers: a trigger is something that can make a seizure more likely to happen. 

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Seizure Triggers: a trigger is something that can make a seizure more likely to happen. 

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This page covers the most common epileptic seizure triggers in children and young people, including poor sleep, missed medication and flickering lights.
What are seizure triggers?

Sometimes, when a young person has epilepsy, certain situations can make a seizure more likely to happen.

These situations are called 'triggers' and they vary from child to child. Commonly reported seizure triggers include:

Overtiredness

Dehydration

Fluctuating blood glucose levels

Illness or fever

Stress and anxiety

Overexcitement

Changes in medication or missed doses

Hormonal changes during puberty for both boys and girls, including menstruation

Photosensitivity (flashing or flickering lights), which affects about 3% of young people with epilepsy

Alcohol or recreational drugs

If you know there are specific triggers that cause a young person's seizures, this can help you to predict when they're more likely to happen and take precautions to protect them.

Tiredness and poor or disrupted sleep

A good night's sleep leaves a person feeling refreshed the next day - and children and young people need more sleep than adults.

But it's not just about how much sleep - the quality of sleep matters too.

Lack of proper sleep, not enough sleep and disrupted sleep can increase the risk of an epilepsy seizure, and can also lead to more intense, longer-lasting seizures.

So, turn off all devices - TV, mobiles, tablets - one hour before bedtime.

We don't know why exactly lack of sleep triggers seizures, but there is a definite link between the sleep-wake cycle and seizures.

During the sleep-wake cycle, there are changes in electrical activity in the brain, as well as hormonal activity.

If they consistently have more seizures when they don't sleep well, it's important to find out what causes the poor or disrupted sleep - and avoid this in future.

Managing sleepovers

Sleepovers can be an important part of a child's social development.

But you might be anxious about the child having a seizure at a sleepover.

The best thing to do is to talk to the child about this and discuss it with the other parents so they understand why you're concerned.

Make sure the parents know:

The child has epilepsy

What their seizures look like

What triggers their seizures, e.g. staying up too late and playing computer games for long periods without a break

How to manage seizures - make sure that they are comfortable about doing this

About emergency medication and are comfortable with having to give it, if needed

Also make sure the other children at the sleepover:

Know about the child's epilepsy

Understand that they need to get an adult as soon as a seizure happens

It might help to ease into sleepovers.

You could start by having a sleepover at your house. Another option could be to pick up the child at an agreed time before bedtime and then work up to them staying overnight.

Missing anti-seizure medication

You can manage some triggers more easily by making sure the young person takes their anti-seizure medication at the right dose, at the right time, as prescribed by their doctor.

This will help to keep a steady level of the medicine in their blood.

Even one missed dose of anti-seizure medication can lead to a seizure - and stopping medication altogether can be very dangerous.

When changing to a new medication, the medication will be closely monitored. You should report any side effects to your team.

Photosensitive epilepsy

Only about 3% of young people with epilepsy have photosensitive epilepsy - they are sensitive to flashing or flickering lights.

A flicker rate of 5-30 times a second is most likely to cause problems.

Other triggers could include:

Geometric shapes

Patterns, such as stripes and checks

Sunlight reflecting on water

Light shining through a row of trees

EEG test results will show that there are changes to the electrical impulses in the brain when looking at flashing lights.

Precautions

If the young person has been diagnosed with photosensitive epilepsy, try to stop them coming into contact with any known photosensitive seizure trigger.

If they do, they should not close their eyes, as this can increase the risk of a seizure.

But they should cover one eye with the palm of their hand and look away from the trigger.

There are also other precautions you can take.

If they are playing a video game, sit them in a well-lit room, at least 3m (9ft) from a TV screen or 1m (3ft) from a computer screen. They should also take a 15-minute break every hour.

If possible, they should use a remote control to change TV channels.

If they approach the TV, encourage them to cover one eye with the palm of their hand.

Don't allow them to play a game on screen when they are tired, as this increases the risk of a seizure.

Encourage the young person to take regular 10-minute breaks following 45 minutes of play and to rest between on-screen games.

Newer TV screens - including LCD and plasma - are less likely to trigger a seizure than older TV screens. This is because they either don't flicker or have a high flicker frequency.

People may prefer an LCD screen to a plasma screen, as plasma screens tend to be brighter and have a higher contrast, which may increase the risk of seizures.

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Learn about common seizure triggers in children and young people, including poor sleep, missed medication, and flickering lights.

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This section may aid discussions with your child about their diagnosis. We also know that their siblings may have lots of questions.

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Epilepsy info just for children. Videos, stories, advice and information about epilepsy tailored for kids along with stuff for schools

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A free, confidential and 24/7 text support service for anyone in the UK who is struggling to cope.

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A free, confidential and 24/7 text support service for anyone in the UK who is struggling to cope.

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Shout

Young Epilepsy partner with Shout, a free, confidential and 24/7 text support service for anyone in the UK who is struggling to cope.

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Young Epilepsy partner with Shout, a free, confidential and 24/7 text support service for anyone in the UK who is struggling to cope.

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Jon Shaw Foundation Supporting young people living with epilepsy

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Jon Shaw Foundation Supporting young people living with epilepsy

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young people living with epilepsy

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Jon Shaw Foundation - Supporting young people with epilepsy, improving the mental health of bereaved siblings and promoting the awareness of SUDEP.

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Further Information - Jon Shaw Foundation

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Supporting young people with epilepsy, improving the mental health of bereaved siblings and promoting the awareness of SUDEP.

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Medicines For Children Information Website

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Medicines For Children Information Website

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Medicines For Children - we provide practical and reliable advice about giving medicine to your child.

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Our vision

Our vision is that any parent or carer, wherever they are, has information on their child's medicines that they can trust.

What we offer

Our medicines information pages cover many of the medicines that are prescribed or recommended for children by health professionals. They answer frequent questions, such as how and when to give the medicine, what to do if you forget to give the medicine, and any possible side-effects.

You can also read information or watch our short videos about giving different types of medicines, including tablets, capsules, liquid medicine, inhalers, eye drops/ointment and ear drops.

Who are we?

Medicines for Children is a partnership programme of Royal College of Paediatrics and Child Health (RCPCH), Neonatal and Paediatric Pharmacists Group (NPPG) and WellChild. Read more about us and our work.

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Medicines For Children - We provide practical and reliable advice about giving medicine to your child

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Our vision is that any parent or carer, wherever they are, has information on their child's medicines that they can trust. Our medicines information pages cover many of the medicines that are prescribed or recommended for children by health professionals.

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Please use this link and scan the QR code using your smart phone to access useful information for your anti-seizure medication

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Epilepsy Action: Tips To Ensure You Do Not Run Out Of Medication

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Epilepsy Action: Tips To Ensure You Do Not Run Out Of Medication

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Medicine shortages: tips to help make sure you don’t run out - Epilepsy Action

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While we lobby the government for long-term solutions, we share our top tips to help make sure you’ve always got a supply of your medicine.

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Medicine shortages: tips to help make sure you don’t run out

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Epilepsy Action - Talk & Support virtual groups

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Scroll down and click on the upcoming events to register your place on the group meetingsEpilepsy Action’s free support groups welcome anybody living with epilepsy to talk, listen and share experiences in a relaxed and friendly environment.Whether you’re new to epilepsy or have been living with it for a long time, our groups offer a place for you to ask questions, share stories and connect with other people who understand.If you have any questions, you can email lso@epilepsy.org.uk or call 0113 210 8899.

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Find out more about your rights in school. 

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Find out more about your rights in school. 

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Schools have a legal responsibility

Your school has a responsibility to make sure you are supported:

Equality laws mean you cannot be discriminated against at school. Your school must make reasonable adjustments to help you.

Your school should have things in place to support you including a written policy for supporting students with medical conditions and staff training. You should also have an Individual Healthcare Plan which provides information about your epilepsy.

You may be entitled to support for special educational needs at school.

You may be able to get help with exams known as "access arrangements". If your epilepsy means you can't do an exam or your ability to do the exam is affected, you could have your marks adjusted.

As a young person with epilepsy, you have certain rights at school. It is your school's responsibility to make sure you have the support you need. But it can help to know your rights and what you are entitled to.

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As a young person with epilepsy, you have certain rights at school including: An Individual Healthcare Plan, reasonable adjustments and support with exams.

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Education, Health and Care (EHC) plans are for disabled children and young people with special educational needs (SEND) who need more help.

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What is an 'Individual Healthcare Plan' and what are the benefits?

An Individual Healthcare Plan (IHP) is a detailed document created for school-age students with medical conditions, such as epilepsy.

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Our campaign calls for UK governments to ensure schools have a current Individual Healthcare Plan (IHP) for every child with epilepsy. Too many children with epilepsy are left feeling isolated and excluded at school, due to a lack of understanding about their condition. We want to ensure every child has an equal opportunity to succeed, and having an IHP in place is the best way to ensure that can happen!

So, what is an Individual Healthcare Plan (IHP)?

An Individual Healthcare Plan (IHP) is a detailed document created for school-age students with medical conditions, such as epilepsy. It describes their seizures, how their condition is best managed, and the impact it has on their learning and behaviour, including any anti-seizure medication side effects. A clear emergency protocol must also be included, including when an ambulance should be called.

What should an IHP include?

As a minimum, an IHP should include:

The young person's epilepsy diagnosis

A brief description of their seizure type(s) and any signs that a seizure might be about to occur

Any known seizure triggers relevant to the young person

Basic management of seizures/seizure first aid including any follow-up care needed

Current medication, including dosage

Emergency protocol

Impact on learning and behaviour (utilising the ABLE Tool)

Circumstances that call for additional consideration / risk assessment

Reasonable adjustments required, including in the physical environment, curriculum, exams, etc.

Additional training required, which may include administration of emergency medication

Written permission from the parents and headteacher for any medication to be administered during the school day / school activities

Communication protocol - who needs to know about the young person's epilepsy and what they need to know

Contact information

Why are IHPs essential and what are the benefits?

Clarity

A good seizure description can help everyone to recognise what happens to that young person and is much more useful than just the name of the seizure type(s). It can also help staff recognise when emergency procedures need to be followed.

If the young person has more than one type of seizure, different medical management may be needed for each seizure and this can be clearly shown on the IHP. An IHP can provide clear instructions on how parents should be informed about a seizure and when staff should follow emergency procedures.

Accurate Observation

Once a good seizure description has been incorporated in the IHP, school staff can be more aware of what to look out for and what needs to be recorded.

Accurate eye witness accounts can be given to the young person's medical team via the parents and this provides useful information that may influence treatments. Comparisons with previous seizures enable changes to be identified which may indicate the need for medication to be revised.

Reassurance

When school staff, the young person and their parents or carers have agreed what needs to be done, and this is set out clearly in the IHP, everyone can feel more confident about the young person's safety and inclusion in all school activities.

The increased confidence of the school staff will also extend to the class peers, encouraging them to include the young person with epilepsy in their social groups.

Consistency

All school staff will be aware of the young person's condition and know what to do if they have a seizure. They'll also understand the impact epilepsy has on the young person and the strategies in place to support them.

The school should record any changes in the young person's learning, academic achievement, emotions and/or behaviour, and share this information with their parents or carers. Sometimes, it can be difficult to know whether such changes are due to seizures, anti-seizure medication or ongoing brain activity. They may indicate a change in the young person's epilepsy that requires further investigation by their medical team and, possibly, changes in their treatment.

Ideally, the IHP should be developed jointly between the school, the young person, their parents or carers, and healthcare professionals. If a healthcare professional cannot attend, find out what you need from your team to take to the meeting here.

As epilepsy can change over time, IHPs should be reviewed annually, or sooner if circumstances have changed. Parents should be reminded to keep the school informed of any changes in seizure activity, medication or behaviour.

An IHP is needed even if a young person's seizures are currently controlled by treatment, because seizures may reoccur and epilepsy may still be having an impact on the young person's learning and behaviour.

Our Call to Action

No child should feel isolated or excluded at school. Children with epilepsy face unique challenges, but with an IHP, these challenges can be managed effectively. We are calling on UK governments to ensure that every child with epilepsy in every school has an Individual Healthcare Plan. Sign our petition today and help us advocate for the necessary changes that will grant every child the equal opportunity to thrive.
Sign our petition today.
Together, we create possible. It's time for action. Enough is enough!

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What is an 'Individual Healthcare Plan' and what are the benefits?

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An Individual Healthcare Plan (IHP) is a detailed document created for school-age students with medical conditions, such as epilepsy.

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Matthew's Friend - further information on Ketogenic diet.

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Matthew's Friend - further information on Ketogenic diet.

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Who can use them and how to prepare yourself and your family for treatment Watch our cooking channel and download recipes and useful information. Meet others in your situation and find out what Keto events are happening in your area.

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Who can use them and how to prepare yourself and your family for treatment Watch our cooking channel and download recipes and useful information. Meet others in your situation and find out what Keto events are happening in your area.

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The Brain Charity helps people with all forms of neurological condition to lead longer, healthier, happier lives.

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The Brain Charity helps people with all forms of neurological condition to lead longer, healthier, happier lives.

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Benefits and epilepsy | Epilepsy Society

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Having epilepsy does not automatically entitle you to claim benefits. These are some of the…

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Disability Living Allowance (DLA) for children

Help for children under 16 with disabilities - DLA rate, eligibility, how to apply, claim form.

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Disability Living Allowance ( DLA) for children may help with the extra costs of looking after a child who:

is under 16

has difficulties walking or needs much more looking after than a child of the same age who does not have a disability

They will need to meet all the eligibility requirements.

The is between £26.90 and £172.50 a week and depends on the level of help the child needs.

If your child lives in Scotland

You need to apply for Child Disability Payment instead of DLA for children.

If your child is getting DLA for children but they have moved to Scotland, you'll need to report this change so they can get Child Disability Payment instead.

If your child moves from Scotland to England or Wales

If your child gets Child Disability Payment, you must:

Your Child Disability Payment will stop 13 weeks after your child moves - apply for DLA as soon as possible after moving or your payments could be affected.

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Disability Living Allowance (DLA) for children

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Help for children under 16 with disabilities - DLA rate, eligibility, how to apply, claim form.

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Treating Uncontrolled Seizures in Children | VNS Therapy

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With early use of VNS Therapy, studies show children have seen improvements in alertness, concentration and energy at a critical time in their development.

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Photosensitive epilepsy is rare. Around 1 in 100 people in the UK have epilepsy. And of these people, 3 in every 100 have photosensitive epilepsy.

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Photosensitive epilepsy - Epilepsy Action

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Information about photosensitive epilepsy, how you can test for it and how you can treat it

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Helping families with children affected by Epilepsy

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HOPE for Epilepsy | Charity | Children with Epilepsy

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HOPE for Epilepsy is an award winning charity dedicated to supporting and connecting families and children that have been affected by Epilepsy.

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Make epilepsy learning possible for others in future and donate today

Epilepsy Action Learning has a range of online courses and learning resources to help you understand more about epilepsy.

Courses contain information, learning activities, videos and more. All the learning resources have been written with and reviewed by epilepsy experts. We make sure the content is up-to-date, accurate and accessible. You can work through the courses at your own pace and at a time that suits you.

Choose the right course for you

Epilepsy Action is the working name of British Epilepsy Association, a registered charity in England and Wales (No. 234343) and a company limited by guarantee (No. 797997) in England.

Registered Office: New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY, United Kingdom

Main office: +44 (0)113 210 8800

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Epilepsy Action Learning: online learning

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Learn about epilepsy online now. Interactive courses for the general public, people with epilepsy, schools, care professionals and others.

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This padlet is aimed at children and young people (CYP), parents and carers, and anyone who works with CYP with Epilepsy.

Each column is titled with its contents and who it is aimed for (parents/carers, children and young people, professionals.)

Scroll right to see all the columns and topics.

Scroll down each column to find additional information.

Click on website links or images to open the web page or document.

A search bar at the top right corner can be used to search the padlet for specific content you are looking for.

New content is always being added.

Content is reviewed bi-annually and any out of date information, or broken links are removed/replaced.

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Epilepsy Action: I have epilepsy. An explanation. 

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Epilepsy Action: I have epilepsy. An explanation. 

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Basic information/summary on what epilepsy is. Every child is different.

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What is epilepsy? Causes, Symptoms and Diagnosis | Epilepsy Action

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Epilepsy is a neurological condition affecting 1 in 100 people in the UK. Find out what causes epilepsy, what the symptoms are, and how it is diagnosed and treated.

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This section may aid discussions with your child about their diagnosis. We also know that their siblings may have lots of questions.

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Epilepsy info just for children. Videos, stories, advice and information about epilepsy tailored for kids along with stuff for schools

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Helping your child to swallow tablets – Medicines For Children

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This page offers practical advice about helping your child to swallow tablets. The same techniques can be used for swallowing capsules. Specific information on individual medicines is available on the Medicines Information pages.

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The Daisy Garland charity supports children in the UK with drug-resistant epilepsy. Funding ketogenic dietitians, life-saving monitors and providing vital family support.