A seizure happens due to sudden, excessive electrical activity in the brain. It can cause:

• Jerking movements (convulsions)

• Stiffening of the body

• Staring spells or unresponsiveness

• Loss of consciousness

• Unusual sensations or movements

A first seizure refers to the first time a child experiences one of these episodes.

There are some events that may mimic a seizure, but have in fact happened for a different reason.

Provoked seizures could include:

• Febrile Seizures (in children aged 6 months – 6 years, associated with a high fever, do not indicate epilepsy in vast majority of cases)

• Serious infections/sepsis

• Head injury

• Low blood sugar

• Electrolyte imbalances – e.g. low sodium, calcium, or magnesium

After a first seizure, doctors may perform blood tests and ECG (electrical tracing of the heart), as part of an assessment to check that nothing has provoked it.

A child with an unprovoked seizure will be assessed as to the risk of it happening again (often in a specific 'first seizure' or 'first fit' clinic). Most of this assessment will happen through an experienced doctor/nurse taking a careful history and examining a child.

Tests can be additionally useful to help estimate the risk of seizures recurring. These could include an:

• EEG (electroencephalogram) to check the brain's electrical activity

• MRI scan to check the structure of the brain

  
  

  
  

rcpch_following_a_first_seizure_without_fever_in_cyp_cyp_a4_2020_v1.1.pdf

St John's Ambulance Video Seizure First Aid for Babies

https://youtu.be/CcQZRDcGZpE?feature=shared

St John's Ambulance Video Seizure First Aid for Adults

https://youtu.be/Ovsw7tdneqE?feature=shared

Child's Video for EEG from Young Epilepsy

https://youtu.be/M1hJTIalJdg?feature=shared

How Does an EEG Work?

• Small electrodes (sticky sensors) are placed on the scalp.

• These electrodes detect electrical signals produced by brain cells.

• The signals are recorded as wave patterns on a computer.

• A specialist interprets the patterns to look for any abnormalities.

Why is an EEG Done?

Doctors use an EEG to:

• Check for unusual brain activity after a seizure.

• Diagnose epilepsy and determine the type of seizures.

• Investigate unexplained fainting, confusion, or blackouts.

• Assess brain function after head injuries, infections, or strokes.

  
  

Types of EEG Tests

• Standard EEG – Takes about 20-60 minutes while the child is awake and relaxed.

• Sleep/drug-induced EEG – Done while the child is asleep (sometimes after sleep deprivation) or after having medication such as Melatonin.

• Ambulatory EEG – Recorded over 24-72 hours using a portable device at home.

• Video EEG/ Video Telemetry – Includes a video recording to monitor movements during a seizure.

Preparing a Child for an EEG

• Wash their hair the night before (avoid hair products).

• Encourage them to stay still during the test.

• For sleep EEGs, you may be given additional information.

Why is an MRI Used for Seizures?

A brain MRI may be done after a first seizure to check for:

• Brain abnormalities (changes/differences in the structure of the brain, e.g. from during the first few years of development)

• Scarring or damage from past injuries, strokes, or infections

Not every child needs an MRI after a first seizure (e.g. if a child's epilepsy type is already precisely known).

How Does an MRI Work?

• The child lies on a table that moves into a large, tunnel-like scanner.

• The machine uses powerful magnets and radio waves to take images of the brain.

• A special dye (contrast agent) may be injected into a vein for clearer images.

• The scan takes about 30-60 minutes and requires the child to stay very still.

  
  

Is an MRI Safe for Children?

• Yes, it is very safe. There is no radiation (unlike X-rays or CT scans).

• Some children may need sedation or a General Anaesthetic if they struggle to stay still.

• It can be noisy, so earplugs or headphones are often provided.

  
  

How to Prepare a Child for an MRI

• Remove metal objects (jewellery, hair clips, etc).

• Wear comfortable, metal-free clothing.

• If sedation is needed, sometimes the child may need to be Nil-By-Mouth, the team will explain the times when this is needed from.

• Bring a comfort item (like a toy or blanket) to help them relax.

  
  

What Happens After the MRI?

• A radiologist reviews the images.

• Your doctor/specialist nurse will explain the results and whether further tests or treatments are needed.

  
  

NHS information on how MRI is performed

MRI scan - How it's performed - NHS

Why is Genetic Testing Done for Epilepsy?

Genetic testing is useful for:

• Identifying genetic epilepsy syndromes

• Understanding the cause of seizures when no other explanation is found

• Personalising treatment (some mutations respond better to specific medications)

• Assessing risks for other family members

Not all childhood epilepsy will have an identifiable genetic cause, but there are certain scenarios where testing will be used.

Who Should Have Genetic Testing?

Doctors may recommend genetic testing if a child has:

• Seizures starting in infancy or early childhood

• Developmental delays or other neurological issues

• A family history of epilepsy or related conditions

Types of Genetic Tests for Epilepsy

There are several types of genetic tests used:

• Gene Panel Testing – Looks at specific genes known to be linked to epilepsy

• Whole Genome Sequencing (WGS) – Analyses the entire DNA sequence and then looks for genes known to be associated with epilepsy.

• Chromosomal Microarray – Detects large genetic changes that may be linked to epilepsy.

How is Genetic Testing Done?

• A blood sample is taken from the child and sometimes also from the parents.

• The sample(s) get sent to a genetics lab for analysis.

• Results can take several months, depending on the test.

What Happens After Genetic Testing?

• If a mutation linked to epilepsy is found, doctors may adjust treatment or offer genetic counselling.

• If results are unclear, more testing or specialist referrals may be needed.

• If no mutation is found, it does not rule out epilepsy but means that there is no current identifiable cause (many cases have non-genetic causes).

  
  

Global genomic collaboration improves lives and treatment for children with epilepsy | Great Ormond Street Hospital

Genetic and genomic testing - NHS

Genetics and epilepsy | Epilepsy Society

Further Videos are available from other websites such as

https://youtu.be/PG12JfJJW9U?feature=shared

What is epilepsy?

Taken from Young Epilepsy

Epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body. This disruption causes repeated seizures.

Epilepsy can affect anyone, at any age, from any walk of life.

A one-off seizure does not necessarily mean that you have or will develop epilepsy.

An epileptic seizure results from a sudden electrical discharge in the brain that causes changes in sensation, behaviour or consciousness.

Seizures can take many forms because the brain is responsible for such a wide range of functions.

Seizure symptoms depend on where in the brain this abnormal burst of electrical activity happens. As a result, there are many different types of seizures - most usually last from a few seconds to a few minutes and usually stop without any treatment.

Epilepsy facts and stats

• Approximately 625,800 people in the UK have epilepsy – around 1 in 107 people.

• There are around 103,600 children and young people with epilepsy in the UK (aged 0-24). This is the equivalent of 1 in 200 children and young people.

• Epilepsy is more common in children and young people as they get older:

  • 1 in 1000 children aged 0-4

  • 1 in 333 children aged 5-9

  • 1 in 200 young people aged 10-14

  • 1 in 133 young people aged 15-19

  • 1 in 111 young people aged 20-24

• Epilepsy affects approximately 1 in 200 school-age children (aged 5-19).

• Around three-quarters of children will either outgrow their epilepsy or it will be well controlled by anti-seizure medications.

• It is estimated that around 40% of children with epilepsy have a learning disability.

• Around 3% of people with epilepsy are photosensitive, which means their seizures are brought on by flashing lights.

• Each year in the UK, around 1,000 people die from causes related to epilepsy.

Epilepsy information from NHS Page

Epilepsy - NHS

Information from Epilepsy Action on Your Child and Epilepsy

Your child's epilepsy - Epilepsy Action

Information from Young Epilepsy

Support for Parents & Carers | Young Epilepsy

Online Learning Course for Parents

Your child and epilepsy | Epilepsy Action Learning

What is epilepsy and types of seizure for children to understand

Young Epilepsy Information for Children and Young People

I have epilepsy | Young Epilepsy

Information from Epilepsy Society for Young People

Young people Nov 23.indd

Information for siblings

My brother or sister has epilepsy - Epilepsy Action

Information aimed at Young People with Epilepsy

The Channel | Young Epilepsy

Home - The Epilepsy Space

Free Text service- Shout for Young Epilepsy if they are struggling

Shout | Support Service for Young Epilepsy

Young Epilepsy Youth Clubs

Connect through Virtual Youth Groups | Support

Parents and Carers Support Club- Epilepsy Action

Parents and Carers virtual Talk & Support Group | Eventbrite

These start in one part of the brain and can be with or without loss of awareness.

Focal Aware Seizures

• The child remains awake and aware

• May experience jerking movements, strange sensations, or emotions

• Can last a few seconds to minutes

Focal Impaired Awareness Seizures

• Awareness is affected – the child may be confused or unresponsive

• May do automatic movements (lip-smacking, fiddling, wandering)

• Can last around 1-2 minutes

Generalised Seizures

• These affect both sides of the brain and usually involve loss of consciousness.

Tonic-Clonic Seizures

• Stiffening (tonic phase) → Jerking (clonic phase)

• May fall to the ground, shake, and be unresponsive

• Can last 0-5 minutes or longer

• Recovery may involve drowsiness, confusion, or headache

• Emergency: If it lasts longer than 5 minutes, or a time specified by your epilepsy team, call 999

Absence Seizures

• Brief staring spells (5-10 seconds)

• The child may seem "daydreaming" or unresponsive

• No shaking or jerking

Myoclonic Seizures

• Sudden, brief muscle jerks (like being startled)

• Often affects arms or legs
  

Atonic Seizures (sometimes called drops/drop attacks)

• Sudden loss of muscle tone – child may collapse or fall

• Can cause injuries due to falling
  

Tonic Seizures

• Body stiffens suddenly (without shaking)

• Can cause falling if standing
  

Clonic Seizures

• Repeated jerking movements (without stiffening first)

• Less common than tonic-clonic seizures

Infantile Spasms

• Sudden brief spasms (bending forward or arms jerking)

• Happens in babies under 1 year old

• Often occur in clusters

Functional Neurological Seizures (FND Seizures) – are seizures that look like epilepsy but are not caused by abnormal electrical activity in the brain. Instead, they are due to a problem with how the brain processes stress, emotions, or past trauma.

Functional seizures can look similar to epileptic seizures but may have:
✔ Shaking or jerking movements (like a tonic-clonic seizure)
✔ Sudden loss of awareness or collapse
✔ Trembling, flopping movements, or weakness
✔ No typical post-seizure confusion (unlike epilepsy)
✔ Seizures triggered by stress, anxiety, or past trauma

Functional seizures are linked to Functional Neurological Disorder (FND), which affects how the brain processes signals. Causes may include:

• Stress or emotional distress (e.g., school stress, bullying)

• Past trauma (e.g., abuse, accidents, medical trauma)

• Anxiety or depression

• Dissociation (feeling disconnected from reality)

They are not done on purpose—the brain reacts automatically, like a reset.

How are they diagnosed (Epilepsy Society)

If you have seizures, your GP will usually refer you to a specialist for diagnosis. This will usually be a neurologist (a doctor who specialises in the brain and nervous system) to see if the seizures are epileptic. Or you may be referred to a psychiatrist or psychologist (as functional seizures are usually classified as a psychiatric condition).

It may be easier for doctors to try and rule out possible physical causes first, including epilepsy. This will influence the types of tests you might have.

Functional seizures can be difficult to diagnose because they can appear similar to epileptic seizures. There are no symptoms that will definitely identify functional seizures from epileptic seizures.

The specialist will ask you about what happens to you during a seizure. If you don’t remember your seizures, you might like to bring someone to the appointment who has seen your seizures. 

Tests

Some tests are used to rule out other causes of seizures, including epilepsy.

• Medical examinations and blood tests can be used to check your overall health and see if your seizures have a physical cause such as diabetes.

• Brain scans such as CT (computerised tomography) or MRI (magnetic resonance imaging) are used to form a picture of your brain.

If the tests show no neurological or physical cause for your seizures, and your specialist thinks it might be functional seizures, you may be referred to a psychiatrist or a psychologist for diagnosis.

Treatment for Functional Seizures

Unlike epilepsy, anti-seizure medications do not work for functional seizures. Instead, treatment focuses on:

• Cognitive Behavioural Therapy (CBT) – Helps manage stress and emotions

• Mindfulness & Relaxation – Reduces stress triggers
  Support Groups & Counselling – Helps address past trauma

Many children and young people recover fully with the right support.

Information on Grounding Techniques for FND Seizures

Grounding Techniques for functional seizures (NEAD) - FND Action

Medicine for Children Leaflet

Midazolam-for-stopping-seizures.pdf

Emergency seizure medication is used for prolonged or repeated seizures to stop the seizure quickly and prevent complications.

When is Emergency Medication Needed?

Emergency seizure medication is given when:
✔ A seizure lasts longer than 5 minutes, Or at a time specified by your consultant.
✔ A child has a cluster of seizures without recovery in between
✔ The child has a history of prolonged seizures

This medication should always been given as per the care plan by your Consultant or Epilepsy Specialist Nurse (ESN)

Types of Emergency Medication

• Buccal Midazolam or Rectal Diazepam

Midazolam and diazepam are both benzodiazepine medications. They have a sedative action (makes your child sleepy) and muscle relaxant (muscles go floppy) and are used to control acute epileptic seizures in children.

Diazepam is given rectally but midazolam is given via the buccal cavity (between the gums and cheek) in the mouth. When administered either through the rectal or buccal route, the medication is absorbed directly into the bloodstream.

Medicine for Children Leaflet- Rectal Diazepam

Diazepam for stopping seizures (PV2) MJ.indd

Paraldehyde has a sedative effect and is sometimes used if benzodiazepines are not effective. This medication is given rectally.

Medicine for Children Leaflet- Paraldehyde

Paraldehyde-for-seizures-2.pdf

Information on emergency medications from Young Epilepsy

Status epilepticus & emergency medication | Young Epilepsy

Medications given in hospital to stop seizure may have different names and be given by different routes.

Information on different types of Anti-Seizure medications

List of anti-seizure medication | Epilepsy Society

Information on Anti-Seizure medications

An introduction to anti-seizure medication | Epilepsy Society

Information on Anti-Seizure medications

Epilepsy medicines - Epilepsy Action

Common seizure triggers include

• Missed Medication

• Lack of Sleep

• Stress & Anxiety

• Illness, Fever & Infections

• Hormonal Changes (Puberty & Menstruation)

• Overstimulation & Sensory Overload

• Flashing / flickering lights (Small number of people with Epilepsy)

• Skipping meals or Fasting

  
  

Seizure triggers - Epilepsy Action

Surgery for epilepsy | Great Ormond Street Hospital

How can surgery help my child’s epilepsy?

The aim of the surgery is to remove the underlying cause of the seizures and therefore cure the epilepsy. In some cases, however, it may only be possible to reduce the frequency of seizures as the cause cannot totally be removed.

Which children might be helped by surgery?

We usually recommend surgery for children with focal epilepsy who continue to have troublesome seizures despite trying antiepileptic medicines. Therefore we will usually consider surgery after a few years of epilepsy.

However, we may consider surgery where it is very clear at an early stage that seizures are particularly difficult. Due to modern methods of investigation, it is now possible to offer surgery much earlier in the course of the epilepsy and to younger children. There is no youngest age for surgery.

Children with epilepsy may have additional problems with learning and behaviour and/or special educational needs and this may also contribute to a decision about surgery.

More information in available on the link above

GOSH information on Ketogenic Diet and Service

Ketogenic diet: overview | Great Ormond Street Hospital

Epilepsy Society Information

Ketogenic diet November 24AM.indd

Further information

Home - Matthew's Friends - Ketogenic Diet

The Daisy Garland

This document is intended to enable schools to manage children and young people with epilepsy effectively in an early years or school setting. Recommendations and guidelines contained within are derived from clinical practices and from contributions from stakeholders across London.

An updated guide is due to be released soon.

This includes information and guidance for schools on how to support children and young people with Epilepsy, this includes effects on learning and behaviour.

Education and Epilepsy- Support and Rights

Education and epilepsy - Epilepsy Action

Advanced Epilepsy for Schools Training

Advanced epilepsy for schools | Epilepsy Action Learning

Young Epilepsy Online Training for Schools

Training courses | Young Epilepsy

For training in schools: Checks if this is provided by School Nurse/Epilepsy Specialist Nurse

Guide for schools. Training & awareness | Young Epilepsy

Care Plans

Individual healthcare plans information | Guide for schools

Effect of Sleep on Seizures

• Sleep Deprivation: Increases seizure frequency and lowers seizure threshold.

• Nocturnal Seizures: Some types of epilepsies have seizures predominantly during sleep.

• Sleep-Wake Cycle: Seizures can be linked to specific sleep stages, such as Non-Rapid Eye Movement (NREM) sleep.

  
  

Effect of Epilepsy on Sleep

• Fragmented Sleep: Frequent seizures can lead to poor sleep quality.

• Daytime Sleepiness: Many children with epilepsy experience excessive daytime sleepiness due to disrupted sleep.

• Comorbid Sleep Disorders: Conditions like obstructive sleep apnoea, insomnia, and parasomnias are more common in children with epilepsy.

  
  

Medication and Sleep

• Anti-Seizure Medications (ASMs): Some drugs, like benzodiazepines, can induce sleep, while others, like stimulants or levetiracetam, may cause insomnia.

  
  

Management Strategies

• Good Sleep Hygiene: Regular bedtime, avoiding screens before bed, and ensuring a quiet sleep environment.

• Optimizing Medication Timing: Adjusting ASM schedules to minimize sleep disruption.

Further Resources

Sleep and epilepsy | Epilepsy Society

Sleep seizures - Epilepsy Action

Sleep development, 0–18 years | Young Epilepsy

Guide for schools. Sleep | Young Epilepsy

General Sleep Advice for Children and Young People

Children - The Sleep Charity

Please register with SUDEP Action for a copy of this.

These links further explain what SUDEP is and what is thought to happen.

Further information From Young Epilepsy

Sudden unexpected death in epilepsy (SUDEP)

Additional Learning Disability Easy Read Information is available.

Safety Advice for Parents

Looking after a baby or young child - Epilepsy Action

Further Safety Advice

Safety and risk | Epilepsy Society

Sports and Leisure Advice

Sports and leisure - Epilepsy Action

Water Seizure First Aid

Water first aid | Epilepsy Society

This page also includes information on monitoring and alarms, including information on potential funding grants.

Further Information

Alarms and monitors - Epilepsy Action

Alarms and safety equipment | Epilepsy Society

Other types of passport may also be available in your specific area.

Further Information

5 things to know about 'Transition' | Young Epilepsy

Further Resources

Principles for Transition for Children with Complex Conditions

8 Principles for Transition: Guidance | WellChild

Alder Hey Transition Resource

Home - 10 Steps Transition to adult services

People with epilepsy are eligible if

• epilepsy which needs continuous anticonvulsive therapy

Further Information

Driving - Epilepsy Action

Driving rules for epilepsy - Epilepsy Action

Further Information

Claiming benefits March 2023.indd

What help is available? | Epilepsy Society

Further Information

Epilepsy and your rights - Epilepsy Action

Alcohol, drugs and epilepsy | Epilepsy Society

Sex and contraception - Epilepsy Action

Pregnancy and epilepsy | Epilepsy Society

Women and girls and epilepsy | Epilepsy Society

Starting a family - Epilepsy Action

Work, employment and epilepsy | Epilepsy Society

Work - Epilepsy Action

The Channel | Young Epilepsy

Home - The Epilepsy Space

Heeadsss on the App Store

Further Information

The Mix - Essential support for under 25s

Home - Kooth

Young people | Good Thinking

Barnardo's | Children's charity | Barnardo's

Shout: the UK's free, confidential and 24/7 mental health text service for crisis support | Shout 85258

Step Forward (Tower Hamlets) | Young People's Charity East London – Free Support Services – Counselling, Wellbeing & Mental Health, LGBTQ | Supporting young people since 1988 (Tower Hamlets)

Contact — Docklands Outreach (Tower Hamlets)

Home - Mind

Home - HappyMaps: Help and Resources for Children's Mental Health

A Local Offer gives children and young people with SEND, and their families, information about what support services the local authority think will be available in their local area. Every local authority is responsible for writing a Local Offer and making sure it is available for everyone to see.

North Central London

• Barnet Local Offer :: Home

• SEND Local Offer - Camden Council

• Find Your Islington | SEND Local Offer

• Enfield's local offer for SEND | Enfield Council

• Local Offer | Haringey Council

North West London

• SEND Local Offer – London Borough of Hounslow

• SEND local offer - Hillingdon Council

• SEND Local Offer – London Borough of Harrow

• SEND Local Offer | Brent Council

• Ealing Families Directory | Ealing Local Offer

• Local Offer for SEND | London Borough of Hammersmith & Fulham

• Kensington and Chelsea Family Information Hub | SEND Local Offer

• Westminster Family Information Hub | SEND Local Offer

  
  

North East London

• Home - Barking and Dagenham SEND Local Offer

• 0-25 SEND Local Offer | Family Information Service

• Local Offer | Havering Directory

• Newham Families Advice and Support | Special Educational Needs & Disability Local Offer

• Redbridge FiND | Welcome to the Special Educational Needs & Disability (SEND) Local Offer

• Tower Hamlets Local Offer :: Home

• Local Offer: Special Educational Needs and Disability (SEND) | London Borough of Waltham Forest

But overall, children with epilepsy are more likely to have these difficulties than other children. Getting the right support can really help.

Epilepsy Society | Transforming lives through advocacy, research and care

Home - Epilepsy Action

Young Epilepsy | Homepage

Dravet Syndrome UK - independent UK charity

Home | SUDEP Action

The Daisy Garland

Home - Matthew's Friends - Ketogenic Diet

Epilepsy Research Institute - Radically advancing research into epilepsy

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

Other Charities- Grants and Possible Funding

Learning Disability - Down syndrome - Williams syndrome | Mencap

National Autistic Society

Angelman Syndrome - UK Support, Education and Research Trust - Angelman Syndrome

The Edward Gostling Foundation - Get Grants

Boparan

Caudwell Children | Transforming Lives of Disabled Children

Children Today

Elifar

Family Fund

Florence Nightingale Aid in Sickness Trust

Hospital Saturday Fund – Making Medical Grants to Improve the Health of Communities

Independence at Home - Towards Independent Living

LHH – League of Helping Hand; Linking Help with Hope

Home | Lifeline 4 Kids

Newlife the Charity - Changing the lives of disabled children

HOME - Promise Dreams

What We Do • REACT

Home | Roald Dahl's Marvellous Children's Charity

Sullivan's Heroes - Building brighter futures for disabled children

Variety, the Children's Charity

National UK Charity for Seriously Ill Children | WellChild

Consent to treatment - NHS

Consent to treatment - Assessing capacity - NHS

If you think you may have given your child too much medication, or your child’s breathing slows down or stops, telephone for an ambulance straight away. (Medicine for Children)

In the event that you may need to attempt or are directed by 999 to perform Basic Life Support. Here are videos by St Johns Ambulance showing the steps required.

Child

https://youtu.be/0aV9NS0ogiM?feature=shared

Baby

https://youtu.be/avYRvVHAvfM?feature=shared

Adult

https://youtu.be/BQNNOh8c8ks?feature=shared

Recovery Position

Child

https://youtu.be/GmqXqwSV3bo

Baby

https://youtu.be/NupCeGFUuoo

Adult

https://youtu.be/GmqXqwSV3bo

Consent to treatment - NHS

Consent to treatment - Assessing capacity - NHS

YE handbook forms

Help to give a detailed description of Seizures

Witnessing a Seizure