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This video from Young Epilepsy Explains what Epilepsy is!

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

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Learning Disabilities, Autism and Epilepsy

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Learning Disabilities, Autism and Epilepsy

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This information is for carers of someone with epilepsy and a learning disability.

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Epilepsy and learning disabilities - Epilepsy Action

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Advice for carers for people with epilepsy and a learning disability, including information on the link between epilepsy and learning disabilities

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Epilepsy and learning disabilities

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General advice on safety and epilepsy including bathing and showering, general home safety. Bathroom, kitchen, lift and garden safety.

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

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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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North Thames Paediatric Network: Epilepsy and Mental Health Padlet

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North Thames Paediatric Network: Epilepsy and Mental Health Padlet

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Our North Thames Paediatric Network Epilepsy and Mental Health Padlet page for mental health resources

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Focal Seizures

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

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Online training course designed for people with learning disabilities and their parents/carers.

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Be Epilepsy Aware | Epilepsy Action Learning

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Course overview: This free online course is for people with learning disabilities, and their family, friends, and carers. It will teach you more about epilepsy. Learning outcomes: This course will teach you: What epilepsy is What different types of seizures look like How to stay safe if you have epilepsy

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This information more specific to children including advice on riding bikes and other safety elements.

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A suspected first seizure in a child can be alarming, but it is not always a sign of epilepsy.

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.

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Information on monitoring seizures generally and at night.

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

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Young Epilepsy’s information about nocturnal seizure monitors and other equipment, apps and services for parents of children with epilepsy.

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A child's first seizure may be provoked (examples below), or unprovoked (no obvious cause).

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

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What Happens Next?

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

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First Seizure information for Children and Young People from RCPCH (Without Fever)

rcpch_following_a_first_seizure_without_fever_in_cyp_cyp_a4_2020_v1.1.pdf

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Seizure First aid Video from The Red Cross- Visual Guide for Seizure First Aid

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

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How to help a child having a seizure (epilepsy) #FirstAid #PowerOfKindness

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Young Epilepsy Seizure First Aid Poster

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An EEG (Electroencephalogram) is a test that measures electrical activity in the brain. It is commonly used to diagnose conditions that affect brain function, including seizures and epilepsy.

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.

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What happens during an EEG? | Epilepsy Diagnosis Explained

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What is an MRI (Magnetic Resonance Imaging)?

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What is an MRI (Magnetic Resonance Imaging)?

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An MRI (Magnetic Resonance Imaging) is a scan that creates detailed images of the brain and other parts of the body using strong magnets and radio waves. It helps doctors detect structural differences in the brain that might be causing seizures or other neurological conditions.

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

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Genetic testing is increasingly used to help diagnose and understand epilepsy in children, especially when seizures start early in life or have no clear cause. It can help doctors identify genetic mutations linked to epilepsy and guide treatment decisions.

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

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Epilepsy in children ranges in severity and can leave families and carers with many questions about their child's future health. While genetic testing to find the cause of epilepsy is possible it can take a long time, leaving families waiting for answers.

Published in The Lancet Neurology today, this international study sequenced the genomes of 100 babies under the age of one with unexplained seizures from four countries (England, USA, Canada and Australia) to better understand the potential strengths of early, broad genome sequencing (a process which looks for changes across the entire genome) for infantile epilepsy.

The researchers used rapid genome sequencing (rGS) to investigate the impact of an expedited genetic diagnosis on care for the first time. Across all children enrolled in the study, 43 per cent received a diagnosis within weeks, and that diagnosis impacted prognosis in nearly 90 per cent of those cases, guiding treatment options for over half.

Called Gene-STEPS, Shortening Time of Evaluation in Paediatric epilepsy Services, the study is the first collaboration launched through the International Precision Child Health Partnership (IPCHiP), an international consortium ( Boston Children's Hospital, Murdoch Children's Research Institute with The Royal Children's Hospital, The Hospital for Sick Children (SickKids) and UCL Great Ormond Street Institute of Child Health (UCL GOS ICH) and Great Ormond Street Hospital) that leverages each institution's expertise and genomic infrastructure to accelerate discovery and the development of therapies for children.

The UK team, led by Dr Amy McTague (GOSH and UCL GOS ICH) utilised expertise within the Translational Research Team at the North Thames Genomics Laboratory Hub (NT GLH) to establish a new rGS pathway for children enrolled in the study at GOSH.

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Global genomic collaboration improves lives and treatment for children with epilepsy

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An international research collaboration, including GOSH and our research partner UCL Institute of Child Health, has shown that a technique known as rapid genome sequencing can provide a diagnosis for 43 per cent of children with unexplained epilepsy and significantly benefit their care.

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What to record when writing down seizure

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What to record when writing down seizure

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Seizure Recording chart

YE handbook forms

Help to give a detailed description of Seizures

Witnessing a Seizure

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Seizures can sometimes happen without a clear cause, but many children with epilepsy have specific triggers that increase the risk of a seizure. Identifying and managing these triggers can help reduce seizure frequency.

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

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Seizure triggers are things that can make seizures more likely for some people with epilepsy. Finding and avoiding your triggers can help.

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This booklet has been produced by Young Epilepsy for Parents and explains what is Epilepsy, seizure types and more.

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

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Resources for Children and Young People on Epilepsy

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Resources for Children and Young People on Epilepsy

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Information for Children on Epilepsy

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

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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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Young Epilepsy Support Services- Online form

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

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If you're looking for support please use our referral form.
Epilepsy can be one of the most frightening and isolating conditions a young person can experience. The loss of any sense of safety, living in an unpredictable world, not knowing when their next seizure will happen. All this takes its toll on a child's or young person's mental and physical health, as well as impacting their education and social life.
That's why our Support and inclusion team works with young people and their families to help them through their diagnosis and beyond, to better understand their rights, as well as helping them get access to the right services and support.

Why are our Support and inclusion services needed?

Thousands of children and young people with epilepsy are frightened, lonely and their condition is misunderstood. Children and young people with epilepsy urgently need support because their epilepsy means they are missing out on education, work and social life. Without support, this can impact them now and for the rest of their lives.

Epilepsy doesn't just affect a young person when they're having a seizure, it can affect them every day, in all areas of life. Children and young people with epilepsy may struggle at school and they are four times more likely than their peers to have a mental health problem. Children and young people with epilepsy may struggle with anxiety, lack of confidence and low self-esteem.

Epilepsy is often stigmatised, and children and young people may be discriminated against, even bullied, because of their epilepsy.

Often adults responsible for their care don't understand the condition and can be overprotective or misinformed about how epilepsy affects young people, their behaviour and learning.

We know that it's vital to educate others about childhood epilepsy. When schools, colleges and universities are clued up on epilepsy, they can better support their pupils and students with the condition.

How can we help?

Our Support and inclusion team works with children and young people with epilepsy aged up to 25 years old who have a range of abilities and needs. Our team is here to help, and with their knowledge and experience can respond to each child's or young person's individual needs.

Our Youth support coordinators provide one-to-one guidance, whole-family support and social get-togethers for children and young people with epilepsy, and their families. The support we offer includes:

Giving a young person a safe space to speak.

Informing young people of their rights.

Creating a community for young people, to meet others with the condition and share their stories.

Empowering young people to improve their outlook on living with epilepsy, building their resilience, confidence and independence.

Helping children and young people manage their wellbeing and mental health, signposting them to the help they need

If you think you or your child needs support from our Youth support coordinators, for one to one or group support, please contact us using this form (please note referrals are reviewed every two weeks).

If you work with young people, you might find our flyer useful for sharing information about our youth service. Download here.

Our Inclusion programme helps parents, caregivers and professionals working with young people to better understand, through a young person's eyes, what it's like to live with epilepsy, to ensure children and young people are not left out. Our Inclusion programme includes:

Improving adults' understanding of childhood epilepsy, so its not a barrier to children and young people fulfilling their ambitions, like everyone else.

Providing information, resources and training for education professionals to ensure children and young people with epilepsy are fully included and can thrive at school, college and university.

Helping those living with epilepsy to better understand their rights to equality and opportunity, ensuring they can fully access education and health services.

Providing information and training for employers so young people with epilepsy are not discriminated against in the workplace.

If you are a professional or community leader working with children and young people with epilepsy, take a look at the training and resources we can offer to help you by clicking here.
The Channel
Not every child with epilepsy needs our direct support. We have an online resource that's available to every young person aged 13 and over with epilepsy.

The Channel is a user-led online resource for young people with epilepsy. Filled with relevant and appropriate content The Channel helps young people to navigate the world around them, helps them better live with the condition and enjoy life to the full.

Our Youth Voice Network are young people living with epilepsy, they help co-create age-appropriate content in a language and style young people can relate to but in a well informed and trusted way so young people can get the facts and life hacks they need, straight up.

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Our Support and inclusion team works with young people and their families to help them through their diagnosis and beyond, to better understand their rights, as well as helping them get access to the right services and support.

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Please note the video above is just for Buccal Midazolam, Please give as per the Epilepsy Care Plan.

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.

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Information from Young Epilepsy on anti-seizure medication and monitoring.

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

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This page covers how anti-seizure medications work, how effective they are, finding the right medication for you and getting the right dose, treatment plans and reviews, side effects and safety concerns, and stopping taking them.
Anti-seizure medication is the first line of treatment for epilepsy, allowing about 70% of those with the condition to achieve good seizure control.

Effectiveness of anti-seizure medications

The most common treatment for epilepsy in children and young people is medication.

Medicines used to treat epilepsy are referred to as anti-seizure medications.

Anti-seizure medications do not cure epilepsy or treat the cause. Their purpose is to make seizures less likely to occur.

About 70% of those with epilepsy can achieve good seizure control through anti-seizure medications.

In the UK, there's a wide range of anti-seizure medications.

How do anti-seizure medications work?

The brain is a very complex organ. Its complicated structures and processes are involved in even the simplest things we do every day.

During seizures, for a number of reasons, the delicate balance of these processes is disrupted, causing sudden bursts of abnormal electrical activity.

Anti-seizure medications work by affecting the brain in a way that stops this disruption and makes seizures less likely.

Some anti-seizure medications improve how particular chemical processes in the brain work. Others block or limit the effects of some chemical processes.

Some medications work better for certain types of seizures than for others. There's no test to identify which will be best.

So, finding the right anti-seizure medication can take time and be frustrating because the first drug may not be the best option.

But, don't be discouraged - it's important to persist.

Getting the right dose

Anti-seizure medications are always introduced at a very low dose and then gradually increased. This is sometimes called titration.

This allows your child's body to get used to the medication and reduces the chances of unwanted side effects.

The right dose for children is calculated based on the child's weight as they grow, which means medication doses are tweaked often.

Increasing the dose to the right level may take a few months, so it's vital to follow your doctor's plan.

For some anti-seizure medications, it's important to check how much medication is in a child's bloodstream, so they'll need regular blood tests.

Doctors may also need to monitor how a child's other body systems, such as their liver, are responding to the medication.

What are the side effects of anti-seizure medications?

As with all medications, anti-seizure medications can have side effects.

You should receive a patient information leaflet with the medication that lists any known side effects and how likely they are to occur.

Medicines for Children provides advice about giving medicines to your child. Find out more here.

Some common side effects of anti-seizure medications include:

Drowsiness or lethargy

Irritability or mood swings

Changes in behaviour

Weight loss or gain and increases or decreases in appetite

Difficulty concentrating or learning

Memory problems

Dizziness or unsteadiness

Double vision

Hair loss

It's important you keep a record of any responses to medication, changes in behaviour or possible side effects so you can tell your doctor.

Monitoring behaviour is especially relevant in younger children, as they may not be able to tell you if they are feeling nauseous (sick), but they may be irritable or off their food.

If your child develops a rash soon after starting an anti-seizure medication, or within a month, tell your doctor as quickly as possible. An allergic reaction can be serious.

Safety concerns

Long-term treatment with some ant-seizure medications is associated with a loss of bone mineral density and greater risk of osteomalacia (softening of the bones). These include:

Carbamazepine (Tegretol and other brand names)

Phenytoin (Dilantin and other brand names)

Primidone (Mysoline)

Sodium valproate (Epilim and other brands)

Vitamin D and calcium supplements should be considered for people at risk.

Phenytoin (Dilantin and other brand names) is also associated with a greater risk of serious skin reactions in people of Han Chinese or Thai family background.

Carbamazepine (Tegretol and other brand names) and similar medicines, e.g. oxcarbazepine (Trileptal and other names) and eslicarbazepine acetate (Aptiom, Zebinix and other names), are associated with a greater risk of serious skin reactions in people of Han Chinese, Thai, European or Japanese background.

Anti-seizure medication treatment plans

In discussion with the person with epilepsy, and parents or carers, as appropriate, doctors will develop an anti-seizure medication treatment plan, taking into account:

Sex

Age

The type of seizures

How often the seizures occur

How likely seizures are to occur again

The epilepsy syndrome, if this has been established

Results or findings from electroencephalogram (EEG) or magnetic resonance imaging (MRI) tests

Whether treatment is needed

How and when anti-seizure medications need to be taken

The risks and benefits of anti-seizure medications, including reducing the risk of epilepsy-related death

How they might interact with any other medicines the person is taking

Any co-occurring conditions

The person's preferences, and those of their parents or carers, as appropriate

Personal circumstances, including education, employment, likelihood of getting pregnant, driving, alcohol use and travel

Starting an anti-seizure medication treatment plan

Treatment with an anti-seizure medication usually starts once a diagnosis of epilepsy is confirmed.

Treatment doesn't usually start after just one seizure unless it's clear why it happened and very likely that more seizures will follow.

Doctors will consider starting treatment after one unprovoked seizure, if:

There are signs of damage to the brain, spinal cord, muscles or nerves

EEG test results show definite epileptic activity

Following discussion of the risk of further seizures, the person or their family or carers, as appropriate, think the risk is unacceptable

Brain imaging test results show a structural abnormality

See also Anti-seizure medication, contraception, and pregnancy.

Care plans and individualised emergency management plans

There are different types of care plans. Medical teams should provide care plans for children and young people with epilepsy, as well as individualised emergency management plans.

Find out more about care plans and individualised emergency management plans.

Adults, children and young people with epilepsy, and their families or carers, as appropriate, can ask for a review of their care if they:

Have any concerns

Need support or their care needs change, e.g. to support medicines withdrawal, pregnancy planning or treatment review if seizures start again

Epilepsy specialist nurses

Children and young people with epilepsy should have access to an epilepsy specialist nurse.

Epilepsy specialist nurses can provide information and support in a number of areas, including:

Concerns about how epilepsy and antiseizure medications can affect cognitive function, including memory, attention, concentration, learning and work

Taking anti-seizure medications as prescribed

The side effects of medication and how to cope with these

Changes to anti-seizure medication

Find out more about epilepsy specialist nurses.

Reviewing treatment plans for children and young people

Reviews for children and young people with epilepsy should:

Be discussed with the child or young person, and their parents and carers if appropriate

Be individually tailored to the child or young person's needs, preferences and type of epilepsy

Take place at least once a year

Reviewing treatment plans for adults

Young people with epilepsy usually move from paediatric to adult healthcare between the ages of 16 and 18.

Adults with epilepsy and, if appropriate, their parents and carers, can request a review of their care if they have concerns or need support, or their care needs change.

Examples include supporting medicines withdrawal, pregnancy planning or reviewing treatment if seizures recur.

Adults with epilepsy should have a review at least once a year if they:

Have a learning disability

Have drug-resistant epilepsy

Are at high risk of SUDEP

Have a serious co-occurring conditions

Take anti-seizure medications known to have long-term side effects or to interact with other drugs

Can get pregnant and are taking sodium valproate (Epilim and other brands) or any other high-risk anti-seizure medication known to cause harm to children in the womb

Find out more about anti-seizure medications for girls and young women.

Monitoring anti-seizure medication levels

Doctors should consider monitoring anti-seizure medication levels in people with epilepsy who:

Have uncontrolled seizures

Have side effects from their medication

Have a clinical condition that needs closer supervision, e.g. pregnancy or kidney failure

Don't take their medication regularly as prescribed

Stopping anti-seizure medication

If a person has been free of seizures for two years, they should be assessed to determine the risk of seizures starting again, if they stop their anti-seizure medication.

An epilepsy specialist should carry out the assessment if there's any doubt or concern about the risks.

Before a child or young person stops taking their anti-seizure medication, doctors should discuss with them, and their families or carers, as appropriate:

Their individual risk assessment, including their risk of seizures starting again and the risk of SUDEP

The person's preferences and lifestyle, including whether they drive

If the decision is then made to stop anti-seizure medication, doctors should agree a plan with the person, and their parents or carers, if appropriate, based on the person's risk and personal preferences.

Most anti-seizure medications will be reduced gradually over a three-month period.

Benzodiazepines and barbiturates (both are types of depressant drugs) are usually reduced over a longer period to lessen the risk of withdrawal symptoms.

People taking multiple anti-seizure medications will stop them one at a time.

If seizures start again while or after stopping, the most recent dosage reduction will be reversed and the epilepsy specialist will offer guidance on what happens next.

After epilepsy surgery, antiseizure medication can be stopped under guidance from the epilepsy surgery centre.

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Explore anti-seizure medications, their types, side effects, and tips for effective use. Find resources and support for managing epilepsy.

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Medication for Children Poster on Epilepsy Medication

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Medication for Children Poster on Epilepsy Medication

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QR for parents to scan or professionals to gain information on certain Epilepsy medications

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Medication for Children- General Medication Information

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Medication for Children- General Medication Information

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QR codes for parents or professionals on medications- how to give tablets, capsules etc

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Information taken from the GOSH Epilepsy Surgery Page

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.

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Around 340 children in England could benefit from epilepsy brain surgery each year. The aim of surgery is to completely stop seizures or to significantly reduce the number of seizures the child has.

For children who can have epilepsy brain surgery, it is a more effective treatment than taking epilepsy medicine.

The Children's Epilepsy Surgery Service (CESS) in England is a specialist service that aims to improve access to epilepsy brain surgery for children with difficult to control epilepsy.

It does this by working with other NHS services to ensure children who could benefit are referred. The service then assesses each child's suitability for epilepsy surgery.

Each CESS centre has an expert team of children's epilepsy specialists, neurosurgeons, and other healthcare professionals. These teams have the specialist knowledge and skills needed to assess and treat children who are suitable for epilepsy brain surgery.

The CESS is funded by NHS England for children with epilepsy in England. There are 4 specialist CESS centres that will treat children from all over England, not just those in their local area.

Here is a video of some children talking about their epilepsy surgery.

The CESS centres

Birmingham Children's Hospital NHS Foundation Trust

Great Ormond Street Hospital for Children NHS Foundation

Trust and King's College Hospital NHS Foundation Trust, London

Department of Paediatric Neurology, Bristol Royal Hospital for Children

The Northern Children's Epilepsy Surgery Services (NorCESS) Alder Hey Children's NHS Foundation Trust (Liverpool) and Royal Manchester Children's Hospital (Central Manchester University Hospitals NHS Foundation Trust)

Although CESS is funded by NHS England, it will also treat children who live in Wales but are registered with a GP in England. And they will provide services for children or families in Scotland, Wales or Northern Ireland if their child lives or goes to school in England.

Other children from Wales and Northern Ireland will be referred to the CESS centres for assessment. This is arranged on an individual basis by the local consultant paediatrician or neurologist.

This information looks at what is involved before, during and after epilepsy brain surgery. If your child is already being considered for surgery, the CESS centre will be able to give you more information and answer any questions you have.

Contact details for the CESS centres

Steelhouse Lane
Birmingham
B4 6NH
Tel: 0121 333 9999

Department of Paediatric Neurology
Level 6 Research & Education Centre
Upper Maudlin Street
Bristol
BS2 8AE
Tel: 0117 342 0897

Great Ormond Street
London
WC1N 3JH
Tel: 020 7405 9200

Denmark Hill
London
SE5 9RS
Tel: 020 3299 9000

The Northern Children's Epilepsy Surgery Services (NorCESS) is a joint service between Alder Hey Children's NHS Foundation Trust (Liverpool) and Royal Manchester Children's Hospital (Central Manchester University Hospitals NHS Foundation Trust)

Eaton Road
West Derby
Liverpool
L12 2AP
Tel: 0151 228 4811

(Central Manchester University Hospitals NHS Foundation Trust)
Hathersage Road
Manchester
M13 0JH
Tel: 0161 276 1234 or 0161 701 5072

Types of epilepsy brain surgery for children

There are many different types of epilepsy brain surgery. The type your child has depends on their type of seizures, and where the seizures begin in their brain. Here are some of the more common types:

Focal resection

This is done when surgeons know which part of the brain the seizures start in. Children having this type of surgery have a small part of their brain removed. Although this sounds worrying, the surgeon will only take away damaged parts that aren't needed.

If the part of the brain causing the seizures is in the temporal lobe, the surgery is called a 'temporal' resection. If the part of the brain causing the seizures is in one of the other lobes, it is called an 'extra-temporal' resection.

Corpus callosotomy

During this surgery the 2 hemispheres (halves) of the brain are separated. It is mainly used for generalised seizures, particularly frequent drop attacks ( tonic and atonic seizures), and myoclonic seizures that affect the whole body. It is also used for severe focal seizures that start in one hemisphere and spread to the other.

Hemispherectomy / hemispherotomy

This is major surgery to remove or separate (disconnect) one half of the outer layer of the brain from the other. It is for children who have seizures because one half of their brain is badly damaged or not working properly.

Removing one hemisphere is called 'hemispherectomy'. Sometimes the hemisphere is not removed, but completely disconnected from the rest of the brain. This is called hemispherotomy.

Tests before epilepsy brain surgery for children

To find out if your child will be suitable for surgery, the epilepsy team at the CESS centre will thoroughly assess them.

As part of the assessment, they will ask for your child to have a number of tests, which could include:

What happens on the day of surgery?

Your child will be very carefully prepared for surgery in the operating theatre. They will be put to sleep with a general anaesthetic.

Altogether, this part of the operation may take up to 2 hours.

What happens during surgery?

What happens during surgery will depend on the type of surgery the child is having. Most children will have a small cut made in their skull, so that the surgeon can see their brain. The surgeon may then remove some bone.

On rare occasions, and only usually in children older than 12 years, the surgeon may wake the child up during part of the operation. This is done so that they can find the part of the brain that controls language and movement. The surgeon will explain to your child why this happens. Afterwards, the bone is replaced and fixed to the skull for healing.

Most epilepsy brain surgery takes at least 4 to 6 hours, and sometimes longer.

What happens after surgery?

After their surgery, your child:

Will have a swollen and painful head and face from a few days to 2 weeks. One or both eyes may be swollen and difficult to open

Will need to take painkillers for a few days

Will need to rest and relax for a few weeks, but gradually become more active

Will probably stay away from school for a few weeks, but most children are back by 6 weeks. This should be discussed with your child's surgery team

Shouldn't play contact sports for at least 4 to 6 months

Most children will need to stay in hospital for around 7 to 10 days following surgery. The amount of time can vary depending on the type of surgery. Some children may have to stay in hospital for longer whilst they recover.

Your CESS centre will give you advice about caring for your child once they leave hospital.

Below are some general guidelines for activities parents commonly ask about:

Hair washing

You can usually wash your child's hair before they leave hospital. This might be with the support of the ward nurses. Depending on your CESS centre's practice, this is likely to be between 3 and 7 days after their surgery.

It will also depend on the type of stitches used. The advice is only to use shampoo and no other hair products, such as conditioner, until the wound has completely healed. Hot hair dryers and straighteners should be avoided initially. Your epilepsy nurse will be able to advise you further.

Returning to school

This is very much decided on an individual basis but may be up to a few weeks. It is recommended that going back to school starts off slowly - usually with a visit and then gradually building up from a couple of hours to full time. Most children are likely to be back by 6 weeks after surgery. If your child returns before then, they should avoid any outdoor play until 6 weeks after surgery.

Leisure activities (excluding contact sports)

Your child can go back to their usual activities between 6 and 12 weeks after surgery. Please discuss this further with your surgeon or epilepsy surgery specialist nurse practitioner.

Contact sports

While your child should avoid contact sports in the initial post-surgery recovery period at home, they can usually go back to them between 6 and 12 months after surgery. Some surgeons are happy for this to start earlier. It is very important to discuss this with your surgeon and epilepsy surgery specialist nurse practitioner as this can vary depending on the contact sport.

Swimming

Because of the risk of infection, it is important your child avoids swimming for 6 weeks following surgery. When they start swimming again, it is very important that their usual measures for having epilepsy and being safe in the water are in place.

Flying

If you are planning to fly soon after your child's surgery, it is important to discuss this with their surgeon or epilepsy surgery specialist nurse practitioner. Your child may require an x-ray to check they are safe to fly and might need a fit-to-fly letter before being able to travel.

After surgery care

Once your child leaves hospital, their care will be shared between the CESS centre and the doctor who referred them for surgery.

Epilepsy medicine after surgery

Your child will usually need to continue taking their epilepsy medicine for between 6 months and 2 years after their epilepsy surgery. The decision about reducing or stopping it will depend on whether or not they are still having seizures, and your thoughts and feelings.

If their medicine is reduced, this will be done gradually. You will be told how to do this and will be supported during the process.

Follow-up appointments

Your child's local healthcare team will:

Arrange follow-up appointments to check their progress after surgery

Keep in touch with your child, possibly for several years after surgery

Arrange any development, emotional, behaviour or local services your child needs

Success rates for brain surgery in children

Many children will no longer have seizures following their epilepsy surgery. Across all the surgery types, around 6 in 10 children will be seizure free after 5 years. Once a child has been seizure free for 5 years, it's rare for their seizures to come back.

The success rate varies between the different types of surgery. Hemispheric surgery is the most effective in stopping seizures, followed by temporal lobe resection and then extra-temporal lobe resection.

For children whose epilepsy is caused by some damage or other problem in a specific part of the brain, over 7 in 10 could stop having seizures after surgery.

Benefits and risks

The tests and assessments done before epilepsy surgery are very thorough. They are to make sure that the benefits of surgery are higher than the risk of any complications.

The main benefits are stopping or significantly reducing seizures. But successful epilepsy surgery may also have other benefits, such as:

Being able to stop or reduce epilepsy medicines and their side effects

Improved quality of life

The risks depend on the part of the brain being operated on. You will be able to discuss these with the surgery team before the final decision is made about surgery for your child.

Here are some possible risks:

Complications from surgery

As with any major surgery, there is a small risk of infection or bleeding. If there are any complications from surgery, this could mean your child will need to stay in hospital longer than expected.

Memory problems

The temporal lobes handle memory and language, so any surgery on the temporal lobes can cause problems with remembering, understanding and speaking. The memory problems can be for things that a child has seen ('visual memory') or for things that a child has heard ('auditory or verbal memory').

More seizures than before

Cutting the connections between the 2 hemispheres (sides) of the brain in corpus callosotomy stops seizures spreading from one hemisphere to the other. But it doesn't stop all the seizures, only the drop attacks. In fact, some children may have more focal (partial) seizures, but they are less severe.

Visual symptoms

After removing one hemisphere of the brain in hemispherectomy, a child's vision might be affected for a few days or weeks. Their vision might be reduced, or they might have double vision. They might also have some problems with their peripheral vision. This could be temporary or permanent, depending on how much of the brain has been removed.

One-sided paralysis

After hemispherectomy or hemispherotomy, a child may have limited use of one side of their body. This paralysis is called a 'hemiparesis' or 'hemiplegia'. Physiotherapy and occupational therapy can help children affected with this.

Behaviour problems

Some children may have had behaviour problems before the surgery. Or they may have had problems communicating or relating to other people. Epilepsy surgery itself will probably not help these problems. It is even possible that a very few children will have worse problems than before.

Referral to a CESS centre

The National Institute for Health and Care Excellence (NICE) says that children with epilepsy should have regular reviews of their epilepsy and treatment. At their review, or if they are having problems with their epilepsy at any other time, they may be referred to a CESS centre.

This is most likely if:

An MRI scan shows that there is some damage or other problem in a specific part of the brain or

Initial treatment with epilepsy medicines does not result in a seizure free period of six months

The CESS centre will look at the information in the referral and should accept it if the child has any of these things:

Severe epilepsy that started in the first few years of life, and is thought to come from a single part of their brain

A magnetic resonance imaging (MRI) brain scan which has shown an abnormality in one or more parts of the brain. An example might be a benign tumour or a hypothalamic hamartoma

Focal epilepsy (also called partial epilepsy) that has not been controlled with 2 epilepsy medicines, used either singly or together. These children may, or may not, have an abnormality on an MRI scan

A weakness down one side of the body (hemiplegia) and epilepsy that has not been controlled with 2 epilepsy medicines, used either singly or together

Sturge-Weber syndrome or Rasmussen's syndrome

Drop attacks

Tuberous sclerosis complex (TSC) with epilepsy that has not been controlled by 2 epilepsy medicines, that have been used either singly or together

Support and services

The centre your child is referred to will make sure you and your child have access to the support and services listed below. This includes during the assessment, before, during and after their surgery:

The chance to visit the CESS centre and meet the surgery team before surgery

Support for your family for the time when your child is in hospital

A child-friendly environment with toys, books and activities that are right for your child

A management plan agreed with you and your child. This should include details about follow-up care, and the monitoring and review process

A named doctor or healthcare professional who will coordinate your child's care and act as a link between you and the people treating your child

Access to a member of the team for advice, information and support 24 hours a day

Access to an epilepsy specialist nurse

You will also be given clear information about your child's condition including:

A description of their epilepsy

How their epilepsy will be managed

Medicines and other treatments they might receive

How you and your child can get the best from their treatment

Emotional and behavioural support

Details of patient support groups and charities

Contact details for your child's named nurse

Download our info on children's surgery

Sign up for the latest updates from Epilepsy Action

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Children's Epilepsy Surgery Service in England (CESS) - Epilepsy Action

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The Children's Epilepsy Surgery Service (CESS) in England is a specialist service that aims to improve the quality of epilepsy brain surgery available for children

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Vagus Nerve Stimulation (VNS) is a treatment option for children with drug-resistant epilepsy (when seizures do not stop with medications). It involves implanting a small device that sends electrical pulses to the vagus nerve, which is believed to help reduce the frequency and severity of seizures.

More information in available on the link above

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Vagus nerve stimulation (VNS) therapy - Epilepsy Action

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Vagus nerve stimulation (VNS) therapy involves having a small device implanted under the skin to try help reduce your seizures.

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The ketogenic diet, or ketogenic diet therapy, is sometimes used as a treatment for epilepsy. For some children and adults, the ketogenic diet helps to control their seizures.

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

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Ketogenic diet for epilepsy - Epilepsy Action

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The ketogenic diet is a specialist medical diet for people with epilepsy whose seizures can’t be controlled with epilepsy medicine.

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Ketogenic diet for epilepsy

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London Schools Guide

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.

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Information for Schools from Young Epilepsy

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

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Welcome

This guide is for people who work in schools or other educational settings. It provides wide-ranging information, guidance and educational strategies for supporting young people with epilepsy to ensure they are safe and included in all aspects of school life.

Schools should ensure each young person with epilepsy has an Individual Healthcare Plan (IHP) and that the school has a policy on supporting pupils with medical conditions.

Good communication between the school, parents and the young person plays a key role in ensuring the right support is in place.

All staff working with a young person with epilepsy should also be trained to understand the young person's condition and its impact on their life at school.

If you're a parent or young person, please share this guide with your school. We also have lots of useful information for parents onour website and for young people here.

About the Guide for Schools

This guide outlines the key elements of support.

You'll also find useful information on seizure types, triggers, treatments and first aid, keeping accurate seizure records, and emergency medication.

The guide has information on how epilepsy can impact on young people's learning, emotions and behaviour.

The guide also includes an overview on the different legal framework and guidance for each UK nation relating to medical conditions, disability and education, and special educational needs.

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This guide is for people who work in schools or other educational settings.

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When your child has epilepsy, it’s natural to worry about them having seizures at school. But with the right communication and school support, having epilepsy should not stop your child getting the most out of their education.

Education and Epilepsy- Support and Rights

Education and epilepsy - Epilepsy Action

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My child has epilepsy - How can I make sure they are looked after properly while they’re in school?

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Information for working in partnership with schools about your child's epilepsy

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Access resources and strategies to support children with epilepsy at school. Learn how to manage their educational needs effectively.

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Information on Epilepsy and SEND for schools

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England: Special educational needs and disabilities (SEND)

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Access resources and strategies for supporting children with special education needs and epilepsy in England. Learn how to manage their educational needs effectively.

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Free Epilepsy Online Training For Schools-

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Free Epilepsy Online Training For Schools-

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Basic Epilepsy Training for Schools Click above.

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

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Basic epilepsy for schools | Epilepsy Action Learning

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Course overview This free online course is designed for anyone working in a school. It provides a basic introduction to epilepsy. If you’re a school leader, teacher, or are responsible for SEN needs, we recommend you complete this course and our Advanced epilepsy for schools which looks at epilepsy and learning in more detail. Updated […]

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Sleep plays a crucial role in epilepsy, influencing both seizure occurrence and management. Here are key points about the relationship between sleep and epilepsy in children:

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.

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Sleep and Epilepsy Young Epilepsy Video

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

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What Are Functional Neurological Seizures (FND Seizures)?

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What Are Functional Neurological Seizures (FND Seizures)?

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What Are Functional Neurological Seizures?

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

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This website uses cookies to enhance the browsing experience. By continuing you give us permission to deploy cookies as per our Data Protection & Privacy Policy. Accept Read More

Data Protection & Privacy Policy

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Grounding Techniques for functional seizures (NEAD) - FND Action

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Grounding techniques for Functional Neurological Disorders, functional seizures, non epileptic attack disorder. NEAD FND

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A teacher and parent screening tool for all school-aged pupils with epilepsy

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Epilepsy will affect every child differently. Some children have problems with learning and behaviour, while others don’t.

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

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Epilepsy, learning and behaviour - Epilepsy Action

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This page covers issues children with epilepsy might have in regards to their learning and also potential behavioural problems

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Epilepsy Information in Different Languages 

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Epilepsy Information in Different Languages 

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General Epilepsy Information that can be translated into different languages

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Epilepsy and Seizures :: Healthier Together

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Epilepsy is very common, and people of all ages can develop epilepsy. Epilepsy is when a person has recurring seizures, so having just one seizure doesn’t necessarily mean you will have epilepsy. For more information on epilepsy visit www.epilepsy.org.uk.

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Seizure information and Seizure First Aid (Can be Translated)

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Seizure information and Seizure First Aid (Can be Translated)

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Seizure Information and Seizure first aid which can be translated on the website

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This is when someone with epilepsy dies and no other cause of death can be found during the post-mortem. Many of those who die are often young and otherwise healthy.

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

Further information From Young Epilepsy

Sudden unexpected death in epilepsy (SUDEP)

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SUDEP stands for Sudden Unexpected Death in Epilepsy

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North Thames Paediatric Network SUDEP Article

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North Thames Paediatric Network SUDEP Article

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Information on the work, we as the network has done to establish SUDEP practices across the North Thames Paediatric Network

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North Thames Paediatric Network sign up for the Children’s Checklist - SUDEP Action

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North Thames Paediatric Network sign up to the Paediatric SUDEP and Seizure Safety Checklist.

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SUDEP Action: Paediatric SUDEP Checklist 

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SUDEP Action: Paediatric SUDEP Checklist 

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This is a link to the Paediatric SUDEP Checklist for professional to assess risk for SUDEP in their Paediatric Patients.

Please register with SUDEP Action for a copy of this.

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Children’s SUDEP & Seizure Safety Checklist - SUDEP Action

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Please note that Checklist Registrations will next be processed in the week commencing 24th February.

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Information leaflets for professionals, parents, carers, and young people on SUDEP.

Additional Learning Disability Easy Read Information is available.

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For one-to-one support after an epilepsy death contact our support team today

We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.

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For one-to-one support after an epilepsy death contact our support team today We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.

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Hope For Epilepsy London- Family Support and Anti-Suffocation Pillow Scheme

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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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send_reforms_-_the_local_offer_explained_august_2014.pdf

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

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Learning Disability Hospital to ensure appropriate care for people with learning disabilities in hospital.

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

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Learning Disability Hospital Passport by GOSH

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Learning Disability Hospital Passport by GOSH

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Learning Disability Hospital Passport made by the GOSH LD Team which could be more appropriate for children with Learning Disabilities

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Autism Health Passport from NAS to ensure appropriate care for Autistic Individuals.

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Learning Disability Annual Health Checks

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Learning Disability Annual Health Checks

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Information on Annual Health checks available via the GP for people with learning disabilities from 14 years old.

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People with a learning disability often have poorer physical and mental health than other people. This does not need to be the case.
Annual health checks are for adults and young people aged 14 or over with a learning disability.

An annual health check helps you stay well by talking about your health and finding any problems early, so you get the right care.

You do not have to be ill to have a health check - in fact, most people have their annual health check when they're feeling well.

If you're worried about seeing a doctor, or there's anything they can do to make your visit better, let the doctor or nurse know. They'll help make sure it goes well for you.

Watch this film about annual health checks for people with a learning disability.

Who's eligible?

Anyone aged 14 or over who's on their GP's learning disability register can have a free annual health check once a year.

You can ask to go on this register if you think you have a learning disability.

The learning disability register is different from the register of social care needs managed by local councils.

Check with your GP practice if you or the person you care for is on the register.

How will it help?

You'll get to know your GP better, which will help if you ever do get ill.

Most health problems are simple to treat once you know about them.

Your GP can help stop you getting a serious health condition. This is better than waiting until you're ill.

You can ask your GP questions about your health, how you're feeling, your care or any medicines you take.

Your GP can give you information you need in a way that will help you.

How do you get an appointment?

Adults and young people aged 14 or over with a learning disability who are on the GP practice learning disability register should be invited by their GP practice to come for an annual health check.

What if my GP doesn't offer the annual health check?

Most GP surgeries offer annual health checks to people with a learning disability. However, GP surgeries don't have to offer this service.

If your GP surgery hasn't offered you an annual health check, you can ask them if they could provide one. If they say no, ask your local community learning disability team for advice. They should be able to help you access an annual health check.

Find local learning disability services.

What happens during the annual health check?

During the health check the GP or practice nurse will:

do a physical check-up, including weight, heart rate, blood pressure and taking blood and urine samples

talk to you about staying well and if you need any help with this

ask about things that are more common if you have a learning disability, such as epilepsy, constipation or problems with swallowing (dysphagia)

talk to you about your medicines

check to see if your vaccinations are up to date

if you have a health problem such as asthma or diabetes, the GP or nurse will check how it's going

check to see if you have any other health appointments, such as physiotherapy or speech therapy

ask if family and/or carers are getting the support they need

help make sure that things go well when children move to adult services at the age of 18

If your learning disability has a specific cause, the GP or practice nurse will often do extra tests if there are any other health risks.

For people with Down's syndrome, for example, they may do a test to see if the thyroid gland is working properly.

You'll be asked for your consent (permission) to share information with other services that provide your care. This will help you get the right support if you go to a hospital, for example.

The GP or practice nurse will also give you health information, such as advice on healthy eating, exercise, contraception or stopping smoking.

Making reasonable adjustments for you

A reasonable adjustment is when somebody changes how they do things to make it better for you.

People with a learning disability have a legal right for reasonable adjustments to be made so they can get the same benefits from healthcare services as everyone else.

Ask your GP if you need any reasonable adjustments, such as:

using pictures, large print or simpler words to say what's happening

booking longer appointments

putting an appointment at the beginning or end of the day, if you find it hard to be in a busy waiting room

The reasonable adjustments you need should be written down in a health profile or health action plan that the GP or nurse can use.

Do you have to have an annual health check?

No. All parts of the health check are voluntary.

Anyone who's having the health check, or their carer, can ask the GP or practice nurse for more information about the process.

The person can then give their consent before any tests or procedures are done.

Is it the same as the NHS Health Check?

No. The NHS Health Check programme is for all adults aged 40 to 74.

It assesses their risk of heart disease, stroke, kidney disease, diabetes and dementia every 5 years.

Find out more about the NHS Health Check.

How many people have the annual health check?

From 2016 to 2017, about 53% of people with a learning disability who are on their GP's learning disability register had a health check. This means just under half of people who are on the register did not have a health check.

However, not everyone with a learning disability is on their GP register, so even more people who could benefit from the free annual health check are missing out.

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Learning disabilities - Annual health checks

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People with a learning disability often have poorer physical and mental health than other people. This does not need to be the case. Annual health checks are for adults and young people aged 14 or over with a learning disability.

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Information for Families of people with Learning Disabilities on decision-making including the mental capacity act and Deputyship

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Consent

Consent to treatment - NHS

Consent to treatment - Assessing capacity - NHS

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People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances.
Like adults, young people (aged 16 or 17) are presumed to have sufficient capacity to decide on their own medical treatment, unless there's significant evidence to suggest otherwise.

Children under the age of 16 can consent to their own treatment if they're believed to have enough intelligence, competence and understanding to fully appreciate what's involved in their treatment. This is known as being Gillick competent.

Otherwise, someone with parental responsibility can consent for them.

This could be:

the child's mother or father

the child's legally appointed guardian

a person with a residence order concerning the child

a local authority designated to care for the child

a local authority or person with an emergency protection order for the child

Parental responsibility

A person with parental responsibility must have the capacity to give consent.

If a parent refuses to give consent to a particular treatment, this decision can be overruled by the courts if treatment is thought to be in the best interests of the child.

By law, healthcare professionals only need 1 person with parental responsibility to give consent for them to provide treatment.

In cases where 1 parent disagrees with the treatment, doctors are often unwilling to go against their wishes and will try to gain agreement.

If agreement about a particular treatment or what's in the child's best interests cannot be reached, the courts can make a decision.

In an emergency, where treatment is vital and waiting for parental consent would place the child at risk, treatment can proceed without consent.

When consent can be overruled

If a young person refuses treatment, which may lead to their death or a severe permanent injury, their decision can be overruled by the Court of Protection.

This is the legal body that oversees the operation of the Mental Capacity Act.

Page last reviewed: 08 December 2022
Next review due: 08 December 2025

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Consent to treatment - Children and young people

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Find out how consent applies to children under 16 years of age and young people aged 16 or over.

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Government Website on application and information for Deputyship

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You can apply to become someone’s deputy if they ‘lack mental capacity’. This means they cannot make a decision for themselves at the time it needs to be made. They may still be able to make decisions for themselves at certain times.

People may lack mental capacity because, for example:

they’ve had a serious brain injury or illness

they have dementia

they have severe learning disabilities

As a deputy, you’ll be authorised by the Court of Protection to make decisions on their behalf.

Types of deputy

There are 2 types of deputy.

Property and financial affairs deputy

You’ll do things like pay the person’s bills or organise their pension.

Personal welfare deputy

You’ll make decisions about medical treatment and how someone is looked after.

You cannot become someone’s personal welfare deputy if they’re under 16. Get legal advice if you think the court needs to make a decision about their care.

The court will usually only appoint a personal welfare deputy if:

there’s doubt whether decisions will be made in someone’s best interests, for example because the family disagree about care

someone needs to be appointed to make decisions about a specific issue over time, for example where someone will live

Read the full guidance about when you need to make a personal welfare application.

Becoming a deputy

You can apply to be just one type of deputy or both. If you’re appointed, you’ll get a court order saying what you can and cannot do.

When you become a deputy, you must send an annual report to the Office of the Public Guardian (OPG) each year explaining the decisions you’ve made.

How to apply

Check you meet the requirements to be a deputy.

Send the application forms to the Court of Protection and pay the application fee.

You do not need to be a deputy if you’re just looking after someone’s benefits. Apply to become an appointee instead.

Checks on your application

The Court of Protection will check:

whether the person needs a deputy or some other kind of help

there are no objections to your appointment

If you’re appointed, the Office of the Public Guardian will help you carry out your responsibilities.

You’ll continue to be a deputy until your court order is changed, cancelled or expires.

Other ways to make decisions for someone

If you want to make a single important decision, you can apply to the Court of Protection for a one-off order.

If the person already has a lasting power of attorney (LPA) or enduring power of attorney (EPA), they do not usually need a deputy. Check if they have an LPA or EPA before you apply.

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Deputies: make decisions for someone who lacks capacity

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How to become and act as a Court of Protection deputy - eligibility, responsibilities, how to apply, fees, supervision and when your deputyship ends

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Easy read information on reasonable adjustments which can be made in healthcare for people with Learning Disabilities

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Reasonable adjustments are small changes that can help people with a learning disability A learning disability is to do with the way someone’s brain works. It makes it harder for someone to learn, understand or do things. be treated equally. Easy read

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Barts Health Video on which explains what transition is.

Further Information

5 things to know about 'Transition' | Young Epilepsy

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Transition from child to adult health services

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Ready Steady Go: Resource which is used for transition and long term conditions.

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

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You, if you or your child, is over 11 years old with a long term condition

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Wider Tool kits for Transition including employment and independent living

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Preparing for Adulthood: All Tools & Resources - NDTi

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Great stories and discussions where inclusion really works helping us to learn from each other and to try and build a more inclusive society for all children and young people.

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Information on eligibility for medical exemption form to ensure free medication in adulthood.

People with epilepsy are eligible if

epilepsy which needs continuous anticonvulsive therapy

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Who is entitled (medical conditions)

You're entitled to a medical exemption certificate if you have either:

a permanent fistula (for example, caecostomy, colostomy, laryngostomy or ileostomy) which needs continuous surgical dressing or an appliance

a form of hypoadrenalism (for example, Addison's Disease) for which specific substitution therapy is essential

diabetes insipidus and other forms of hypopituitarism

diabetes mellitus, except where treatment is by diet alone

hypoparathyroidism

myasthenia gravis

myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)

epilepsy which needs continuous anticonvulsive therapy

a continuing physical disability which means you cannot go out without the help of another person

cancer and are undergoing treatment for either:

cancer

the effects of cancer

the effects of cancer treatment

These are the only conditions that entitle you to a medical exemption certificate. If you're not sure about the name of your condition, speak to your doctor.

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A medical exemption certificate entitles you to free NHS prescriptions. Find out if you’re entitled to NHS dental treatment and other help with health cost using the NHS eligibility checker. Check your medical exemption certificate is valid Check that your exemption certificate is valid before cl…

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How to apply for a Freedom Bus Pass

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Freedom Pass provides Londoners over the age of 66 and those with eligible disabilities free public transport across the capital and on local buses across England. Find out more about this scheme and apply for, or manage, your Freedom Pass here.

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Freedom Pass provides Londoners over the age of 66 and those with eligible disabilities free public transport across the capital and on local buses across England. Find out more about this scheme and apply for, or manage, your Freedom Pass here.

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Disability Living Allowance (under 16 years)

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Disability Living Allowance (under 16 years)

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Government website for DLA application

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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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Government website for PIP application

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Personal Independence Payment ( PIP) can help with extra living costs if you have both:

You can get PIP even if you're working, have savings or are getting most other benefits.

You can also read about PIP in Welsh (Cymraeg).

How PIP works

There are 2 parts to PIP:

a daily living part - if you need help with everyday tasks

a mobility part - if you need help with getting around

Whether you get one or both parts and how much you get depends on how difficult you find everyday tasks and getting around.

Daily living part

You might get the daily living part of PIP if you need help with:

preparing food

eating and drinking

managing your medicines or treatments

washing and bathing

using the toilet

dressing and undressing

reading

managing your money

socialising and being around other people

talking, listening and understanding

Mobility part

You might get the mobility part of PIP if you need help with:

working out a route and following it

physically moving around

leaving your home

You do not have to have a physical disability to get the mobility part. You might also be eligible if you have difficulty getting around because of a cognitive or mental health condition, like anxiety.

How difficulty with tasks is assessed

The Department for Work and Pensions ( DWP) will assess how difficult you find daily living and mobility tasks. For each task they'll look at:

whether you can do it safely

how long it takes you

how often your condition affects this activity

whether you need help to do it, from a person or using extra equipment

Help with PIP

If you need help understanding or applying for PIP you can:

If you live in Scotland

You need to apply for Adult Disability Payment (ADP) instead of PIP.

If you currently get PIP, you'll be automatically moved to ADP by summer 2024.

When the move begins, you'll get letters from DWP and Social Security Scotland. Read more about the moving process.

If you move from Scotland to England or Wales

If you get ADP and move from Scotland to England or Wales, you must make a new claim for PIP instead.

Your ADP will stop 13 weeks after you move - apply for PIP as soon as possible after moving or your payments could be affected.

If you get Disability Living Allowance (DLA)

Disability Living Allowance (DLA) is being replaced by PIP for most adults. You'll keep getting DLA if:

you're under 16

you were born on or before 8 April 1948

If you were born after 8 April 1948, DWP will invite you to apply for PIP. You do not need to do anything until DWP writes to you about your DLA unless your circumstances change.

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Personal Independence Payment (PIP) replaces Disability Living Allowance (DLA) - how and when to claim, rates, eligibility.

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Epilepsy information and Driving Government Website

Further Information

Driving - Epilepsy Action

Driving rules for epilepsy - Epilepsy Action

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You must tell DVLA if you've had any epileptic seizures or blackouts.

You must stop driving straight away.

You can be fined up to £1,000 if you don't tell DVLA about a medical condition that affects your driving. You may be prosecuted if you're involved in an accident as a result.

Car or motorbike licence
Report your condition online
You can also fill in form FEP1 and send it to DVLA. The address is on the form.

Your licence may be taken away. When you can reapply for it depends on the type of seizure you had.

You've had epileptic seizures while awake and lost consciousness

Your licence will be taken away. You can reapply if you haven't had a seizure for at least a year.

If you had a seizure because your doctor changed or reduced your anti-epilepsy medicine, you can reapply when:

the seizure was more than 6 months ago

you've been back on your previous medication for 6 months

you haven't had another seizure in that time

You've had a one-off seizure while awake and lost consciousness

Your licence will be taken away. You can reapply when both the following are true:

Medical advisers will base their decision on information you and your doctors send them. If they need to carry out an investigation they'll let you know.

Otherwise you can reapply after a year.

You've had seizures while asleep and awake

You may still qualify for a licence if the only seizures you've had in the past 3 years have been while you were asleep. DVLA will let you know whether or not you qualify after you've filled in the form. Until you hear from them you must stop driving.

You've only had seizures while asleep

You may still qualify for a licence if it's been 12 months or more since your first seizure. DVLA will let you know whether or not you qualify after you've filled in the form. Until you hear from them you must stop driving.

You've had seizures that don't affect your consciousness or driving

You may still qualify for a licence if these are the only type of seizure you've ever had and the first one was 12 months ago. DVLA will let you know whether or not you need to give up your licence after you've filled in the form. Until you hear from them you must stop driving.

Bus, coach or lorry licence

Fill in form FEP1V and send it to DVLA. The address is on the form.

How long you will lose your licence for depends on what type of seizure you have.

You've had more than one seizure

Before you reapply for your licence, you must show you haven't:

had an epileptic seizure for 10 years

taken any anti-epileptic medication for 10 years

got a 2% or higher risk of another seizure, according to DVLA 's medical advisers

You must also have a car and motorbike licence.

You've had a one-off seizure

Before you reapply for your licence, you must show:

You must also have:

a car and motorbike licence

been assessed in the past 12 months by a neurologist

results from medical investigations for epilepsy that are satisfactory to DVLA 's medical advisers

Medical advisers will base their decision on information you and your doctors send them. If they need to carry out an investigation they'll let you know.

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You must tell DVLA if you've had any epileptic seizures or blackouts. You must stop driving straight away. You can be fined up to £1,000 if you don't tell DVLA about a medical condition that affects your driving. You may be prosecuted if you're involved in an accident as a result.

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Information on benefits for available for people with Epilepsy.

Further Information

Claiming benefits March 2023.indd

What help is available? | Epilepsy Society

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Info on UK welfare benefits including Personal Independence Payment (PIP), free bus passes, Disability Living Allowance (DLA) and blue badges

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Information for Young people

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

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Between 13 and 16 with epilepsy? You probably have all sorts of questions about how epilepsy could affect your life, or maybe you have a friend, brother or sister who has epilepsy.

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NICE Guidelines on Transition to Adult Services

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Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body.

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Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body.

It's often helpful to think of your brain as a computer. In someone who has FND, there's no damage to the hardware, or structure, of the brain. It's the software, or program running on the computer, that isn't working properly.

The problems that cause FND are going on in a level of the brain that you cannot control. It includes symptoms like arm and leg weakness and seizures. Other symptoms like fatigue or pain are not directly caused by FND, but are often found alongside it.

Symptoms of FND

FND can have many symptoms that can vary from person to person. Some people may have few symptoms, and some people may have many.

A diagnosis of FND should be made because you have one or more clinical features that a specialist can recognise as typical of FND. It shouldn't be made just because scans or tests for other neurological conditions that have similar symptoms are normal.

A clinical feature is a distinctive way that your symptom presents that is unique to FND. For example, it could be that your eyes close during seizures, or that limb weakness briefly disappears during certain physical tests. Clinical features are what specialists use to identify FND from other neurological conditions with similar symptoms.

Functional limb weakness is when a leg or an arm doesn't work properly. In FND, this happens because of a problem with how the nervous system is functioning.

It can cause a range of symptoms, including:

problems walking

heaviness down one side

dropping things

feeling like a limb isn't part of you

Functional limb weakness can often look a symptoms of a stroke or multiple sclerosis. If you have FND, any scans you have will show no damage to the brain to explain the weakness.

A specialist will diagnose functional limb weakness based on specific clinical features (symptoms) they find when they examine you.
Read more about functional limb weakness
A functional seizure (also called a dissociative seizure) is an episode where someone loses either their awareness of, or their ability to interact with, their surroundings. It may look like an epileptic seizure or a faint.

A functional seizure can appear as:

uncontrolled shaking

suddenly going motionless and unresponsive

staring without responding to surroundings

Some people are aware that seizures are about to happen, while others experience them without warning.

A specialist will ask you and your friends or family about what happens during a seizure, and will look at any video footage you can provide. They'll use this evidence to decide if it's epilepsy, a faint or a functional seizure.
Read more about functional seizures
Functional dystonia is a type of muscle spasm. It causes a part of the body to become stuck in an unusual position. This can be for a short or a long period of time.

Someone with functional dystonia will often present with curled fingers, a clenched hand, or an ankle that turns in.
Read more about functional dystonia
A symptom of FND can be jerks or twitches, which is when someone makes sudden movements.

Everyone experiences random jerks occasionally, like when you jolt awake as you're falling asleep. In FND, however, these uncontrolled jerks and twitches can become much more frequent.
Read more about functional jerks and twitches
Problems with your memory or concentration can be a symptom of FND.

You might find that you:

lose track while doing things, for example being unable to remember why you went into a room

go blank, for example when trying to recall your pin number

lose track during conversations

misplace important things, like your keys or phone

forget words

It's normal to experience these things occasionally. For someone with functional cognitive symptoms, these things happen so often that they interfere with work and home life.

The cognitive symptoms of FND can sometimes be mistaken for dementia. Specialists will look for features that are typical of functional cognitive symptoms when diagnosing FND.
Read more about functional cognitive symptoms
Functional speech and swallowing difficulties can be a symptom of FND. You might experience:

slurred speech

a new stutter

difficulties finding the right word

unintentionally mixing words up

whispering or hoarse speech (dysphonia)

difficulty swallowing, including feeling like there's something stuck in your throat

A specialist will diagnose functional speech and swallowing difficulties based on specific features.
Read more about functional speech and swallowing difficulties
Visual symptoms can be a part of FND. You may experience changes to your vision, like:

blurred vision

double vision

photophobia (sensitivity to light)

reduced vision

A specialist will diagnose functional visual symptoms based on specific features that they find when they examine you.
Read more about functional visual symptoms
Dissociative symptoms are common in FND, although there are many other causes. These symptoms can be hard to describe, but are often described as feeling:

that your body is disconnected from you

that your body doesn't belong to you

disconnected from the world around you

spaced out

that you are floating

that you are having an out-of-body experience

there but not there

You may also be able to hear what's going on around you, but not be able to respond.

These experiences are called dissociation, and can link into other FND symptoms.
Read more about dissociative symptoms
There are other symptoms or conditions that are commonly associated with FND. These include:

What causes FND?

We know that the symptoms of FND happen because there's a problem with how the brain is sending and receiving messages to itself and other parts of the body. Using research tools, scientists can see that certain circuits in the brain are not working properly in people with FND.

However, there's still a lot of research to be done to understand how and why FND happens.

Why does FND happen?

FND can happen for a wide range of reasons. There's often more than one reason, and the reasons can vary hugely from person to person.

Some of the reasons why the brain stops working properly in FND include:

the brain trying to get rid of a painful sensation

a migraine or other neurological symptom

the brain shutting down a part or all of the body in response to a situation it thinks is threatening

In some people, stressful events in the past or present can be relevant to FND. In others, stress is not relevant.

The risk of developing FND increases if you have another neurological condition.
Read more about how and why FND happens.
Diagnosing FND

When diagnosing FND, your healthcare provider will carry out an assessment to see if there are typical clinical features of FND.

Your healthcare provider may still choose to test for other diseases and conditions before diagnosing FND. This is because many conditions share the same symptoms and, in around a quarter of cases, FND is present alongside another neurological condition. Someone can have both FND and conditions like sciatica, carpal tunnel syndrome, epilepsy, or multiple sclerosis (MS).

The diagnosis of FND, however, should be given because you have the clinical features of FND. It shouldn't be given just because there's no evidence of other conditions or illnesses.

Because the symptoms of FND are not always there, your healthcare provider may ask you to video your symptoms. This will allow them to see what your symptoms look like.

Treatments

FND is a really variable condition. Some people have quite short-lived symptoms. Others can have them for many years.

There are treatments available that can manage and improve FND. These treatments are all forms of rehabilitation therapy, which aims to improve your ability to carry out every day activities. Many of these treatments are designed to 'retrain the brain'. Some people with FND benefit a lot from treatment and may go into remission. Other people continue to have FND symptoms despite treatment.

Do not stop taking any medicine that's been prescribed without checking with your GP or healthcare provider first. You could make yourself very ill.
Read more about treating FND
FND in children and young people

FND is broadly the same condition in children and young people. It's unusual for it to occur under the age of 10. It becomes more common through the teenage years.

The treatment for FND in children and young people is similar to adults. It's especially important for families and schools to learn about the condition, so they can respond in the most helpful way.

Where to find support

If you've been diagnosed with FND there are sources of information, charities and support groups that can help you.

The Neurosymptoms FND Guide has more detailed information. There's also an app available with further details about the condition.

My FND is an app that allows you to learn about your symptoms. It helps you track them, and offers advice for managing them.

FND Hope UK is a charity that raises awareness of FND. It provides further information, resources, and support services for those with FND.

FND Action is a charity that provides information on FND and support for those with a diagnosis.

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Information about functional neurological disorder (FND), including the symptoms, causes, and treatments of this condition. For patients in Scotland.

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What is Functional Neurological Disorder - FND Action

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Functional Neurological Disorder (FND) affects how the brain sends and receives information. Learn about symptoms, diagnosis, and treatment options.

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Hope London Epilepsy

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

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Paediatric Epilepsy | HOPE London | Charity

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We are a small award winning London charity dedicated to supporting and connecting families and children that have been affected by Epilepsy.

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Consent

Consent to treatment - NHS

Consent to treatment - Assessing capacity - NHS

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People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances.
Like adults, young people (aged 16 or 17) are presumed to have sufficient capacity to decide on their own medical treatment, unless there's significant evidence to suggest otherwise.

Children under the age of 16 can consent to their own treatment if they're believed to have enough intelligence, competence and understanding to fully appreciate what's involved in their treatment. This is known as being Gillick competent.

Otherwise, someone with parental responsibility can consent for them.

This could be:

the child's mother or father

the child's legally appointed guardian

a person with a residence order concerning the child

a local authority designated to care for the child

a local authority or person with an emergency protection order for the child

Parental responsibility

A person with parental responsibility must have the capacity to give consent.

If a parent refuses to give consent to a particular treatment, this decision can be overruled by the courts if treatment is thought to be in the best interests of the child.

By law, healthcare professionals only need 1 person with parental responsibility to give consent for them to provide treatment.

In cases where 1 parent disagrees with the treatment, doctors are often unwilling to go against their wishes and will try to gain agreement.

If agreement about a particular treatment or what's in the child's best interests cannot be reached, the courts can make a decision.

In an emergency, where treatment is vital and waiting for parental consent would place the child at risk, treatment can proceed without consent.

When consent can be overruled

If a young person refuses treatment, which may lead to their death or a severe permanent injury, their decision can be overruled by the Court of Protection.

This is the legal body that oversees the operation of the Mental Capacity Act.

Page last reviewed: 08 December 2022
Next review due: 08 December 2025

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Consent to treatment - Children and young people

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Find out how consent applies to children under 16 years of age and young people aged 16 or over.

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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

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YoungMinds | Mental Health Charity For Children And Young People

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YoungMinds are a mental health charity for children, young people and their parents, making sure all young people can get the mental health support they need.

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Buccal Midazolam, Rectal Diazepam and Paraldehyde are sedating medication and every child reacts differently to these medication. These medications can have an effect on breathing.

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

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How to do Child CPR - First Aid Training - St John Ambulance