Epilepsy in Children and Young People – Epilepsy: The Untold Side

Living with epilepsy

Epilepsy in childhood and adolescence is not only about controlling seizures. It can affect learning, behaviour, confidence, friendships, sleep, independence, family life, school attendance and the move into adult healthcare. Good care therefore needs to consider the whole child or young person, not only the seizure count.

Key point: children and young people should have individualised epilepsy care that includes seizure management, safety, education, mental health, development, family support and preparation for increasing independence.

Why childhood epilepsy needs its own approach

The developing brain changes rapidly through childhood and adolescence. Epilepsy may interact with development, school performance, sleep, behaviour and emotional wellbeing, while the epilepsy itself can also change over time as the child grows.

Some childhood epilepsies are self-limited and often remit with age. Others are associated with developmental or epileptic encephalopathy, learning disability, autism, genetic conditions or drug-resistant seizures. The support needed by one child may therefore be completely different from that needed by another.

Diagnosis in children can be complicated

Not every unusual movement, stare, collapse or night-time event in a child is epileptic. Syncope, daydreaming, tics, sleep disorders, breath-holding attacks, migraine and other conditions can resemble seizures. Conversely, genuine epileptic seizures can be subtle.

Diagnosis relies on the clinical history, witness descriptions or safe video where available, examination and targeted investigations such as EEG and MRI. Age, developmental history and the possibility of an epilepsy syndrome are particularly important in paediatric assessment.

Seizure types may be easy to miss

Children can have tonic-clonic seizures, but they can also have absence seizures, focal seizures, myoclonic seizures, atonic seizures, tonic seizures, epileptic spasms or other seizure types. Some seizures may look like brief staring, dropping objects, sudden falls, repetitive behaviour, speech arrest or a short period of confusion.

Repeated subtle seizures can be mistaken for inattention or behaviour problems, which is one reason accurate seizure description matters.

Read more: Seizure Types →

Learning and school performance

Epilepsy can affect learning in several different ways. The epilepsy itself, seizure activity, sleep disruption, medication effects, underlying brain differences, anxiety, missed school and postictal recovery can all contribute.

Possible difficulties include:

attention and concentration problems
slower processing speed
memory difficulties
language or word-finding problems
fatigue and daytime sleepiness
reduced confidence after seizures
missed teaching because of appointments, seizures or recovery
difficulty keeping up after a medication change

A sudden decline in school performance should not automatically be labelled laziness or poor motivation. It may signal changes in seizure control, sleep, medication, mood or cognition that deserve review.

Behaviour and neurodevelopment

Children and young people with epilepsy have higher rates of some neurodevelopmental and learning difficulties than the general population. Autism, attention-deficit/hyperactivity disorder, learning disability and behavioural difficulties may coexist with epilepsy, particularly in more complex epilepsies.

Behavioural changes can also appear when seizures increase, sleep worsens, medication changes or a child is struggling emotionally. These factors should be considered before assuming behaviour is simply deliberate or unrelated.

Mental health matters as much as seizure control

NHS England identifies mental health and wellbeing as a major area of epilepsy care for children and young people. Anxiety, low mood, social isolation, stigma, fear of seizures, bullying and loss of confidence can all affect quality of life.

Mental health concerns should not be dismissed as an understandable but unavoidable consequence of epilepsy. They deserve recognition and appropriate support. The young person’s own account should be heard directly wherever developmentally possible, rather than relying only on adults speaking for them.

Every child or young person should have an individualised care plan

NHS England’s national bundle of care recommends a comprehensive written epilepsy care plan that is agreed with the child or young person and their parent or carer and updated when necessary. It should inform care at home and in education settings.

A good plan may include:

the epilepsy diagnosis and seizure descriptions
known seizure triggers where relevant
current medication and treatment details
what the child’s usual seizures look like
what their normal recovery looks like
first-aid instructions
what to do if a seizure is prolonged or seizures repeat
rescue medication instructions where prescribed
when to call emergency services
water safety
participation and everyday-risk information
any effect on learning or behaviour
SUDEP information appropriate to the family’s circumstances
who to contact in the epilepsy service

NHS England also recommends that the plan be reviewed at least annually and updated when clinically necessary.

School and college: an individual healthcare plan

For children and young people whose epilepsy may require support during education, schools and colleges need clear, practical information rather than a generic diagnosis label.

An individual healthcare plan can explain:

how the person’s seizures usually present
what staff should do during and after a seizure
whether rescue medication may be needed and who is trained to give it
when an ambulance should be called
how much recovery time is usually needed
whether memory or concentration may be affected afterwards
reasonable adjustments around attendance, missed work or examinations
water, sports, cooking, science-lab, workshop or trip safety
who should be contacted after a seizure

NHS England’s care bundle uses the presence of a school individual healthcare plan as an important quality measure for school-age children with epilepsy.

Reasonable adjustments in education

Support should be based on actual needs. Depending on the child or young person, adjustments might include extra rest after seizures, flexibility around attendance, help catching up missed work, supervised access to higher-risk activities, medication arrangements, additional time in examinations, reduced cognitive load after a seizure or access to a quiet recovery space.

Where epilepsy coexists with special educational needs, the child may also require wider SEN support. In England, some children and young people may need an Education, Health and Care Plan when needs go beyond what the education setting can ordinarily provide.

Medication at school or college

Daily antiseizure medication and prescribed rescue medication need clear arrangements. Education staff should know what they are responsible for, how medication is stored, who is trained to administer rescue treatment, and what to do if medication is missed or vomited.

Rescue medication should only be given according to the person’s prescribed emergency plan and by someone appropriately trained or authorised.

Participation should be encouraged, not automatically restricted

Children with epilepsy should not be excluded from ordinary school, sport, trips or social activities simply because they have the diagnosis. Risk assessment should be individual and proportionate.

Activities involving water, heights, traffic, machinery or delayed rescue may need additional planning, but many risks can be reduced through supervision, adaptation and staff understanding rather than exclusion.

Bullying, embarrassment and stigma

A seizure in front of classmates can be frightening or embarrassing, particularly during adolescence. Some young people may hide their epilepsy, avoid activities or stop taking medication because they do not want peers to know.

Schools and families should take stigma and bullying seriously. Education about epilepsy can help, but information should be shared in a way that respects the young person’s privacy and wishes whenever possible.

Puberty can change the context of epilepsy care

Adolescence brings hormonal changes, changing sleep patterns, increasing independence, alcohol or recreational-drug exposure for some young people, relationships, contraception and eventually driving or employment.

For girls and young women, medication choice can also have important implications for contraception, pregnancy planning and reproductive safety. These discussions should begin early enough to support informed decisions rather than waiting until pregnancy is being considered.

Medication adherence often becomes more complex in adolescence

As young people become more independent, responsibility for taking medication gradually shifts from parents or carers to the young person. Missed doses may happen because of disrupted routines, embarrassment, forgetfulness, side effects, denial of the diagnosis or deliberate stopping.

Transition planning should therefore include practical skills such as understanding medication, requesting prescriptions, knowing what to do after a missed dose and knowing when to seek help.

Sleep deserves special attention

Teenagers naturally develop later sleep timing, while school schedules, social life and screen use can reduce sleep duration. For some people with epilepsy, disrupted or insufficient sleep is associated with increased seizure likelihood.

Persistent snoring, breathing pauses, insomnia or excessive daytime sleepiness should not automatically be blamed on epilepsy, because separate sleep disorders can coexist.

Read more: Sleep & Epilepsy →

SUDEP and epilepsy-related mortality should not be ignored

NICE and NHS England recommend discussing epilepsy-related mortality and SUDEP in a way that is individualised and appropriate. Families should not be left to discover this information accidentally online without context.

The aim is not to frighten children, young people or parents. It is to explain risk honestly, identify modifiable factors such as uncontrolled tonic-clonic seizures and medication non-adherence, and support safer care.

Read more: SUDEP — Straight Facts →

When specialist tertiary care is needed

Children and young people with drug-resistant epilepsy, uncertain diagnosis, complex syndromes or possible surgical epilepsy should have timely access to specialist tertiary services. NHS England specifically highlights improving access to specialist neurological care and the Children’s Epilepsy Surgery Service.

Failure of two appropriate antiseizure medication schedules should prompt consideration of drug-resistant epilepsy and whether tertiary assessment is appropriate rather than simply continuing an indefinite sequence of medication changes.

Learning disability and autism require adapted care, not lesser care

Children and young people with learning disability or autism may need longer appointments, adapted communication, reasonable adjustments and greater coordination between neurology, paediatrics, learning-disability services, mental-health services, education and social care.

Learning disability should not be used as a reason to exclude someone from appropriate investigations or referral for epilepsy surgery assessment when clinically indicated.

Transition to adult services should start before the handover

Transition is a process, not a single appointment. NHS England recommends that young people with epilepsy have a named worker responsible for transition planning and that preparation begins well before transfer.

The transition period should cover:

understanding the diagnosis and seizure types
managing medication and prescriptions
knowing when and how to seek help
safety and SUDEP
education and employment
driving rules
contraception and pregnancy where relevant
how adult epilepsy services work
what happens in an emergency
which family members or carers the young person wants involved

For young people with complex epilepsy, learning disability or multiple specialist needs, transition may require a longer, more coordinated process involving several services.

Transfer should be developmentally appropriate

NHS England recommends avoiding a rigid age-only approach. Where possible, transfer should happen at a time of relative stability and after the young person has been prepared to navigate adult services.

Paediatric and adult teams should review the diagnosis and management plan together during transition, particularly where the epilepsy is complex or specialist treatment must continue seamlessly.

Parents and carers also need support

A child’s epilepsy can affect the whole family. Parents may be managing night-time monitoring, rescue medication, school communication, appointments and fear about seizures while also trying not to restrict the child’s independence unnecessarily.

As the young person matures, care should gradually become more directly centred on them while still involving parents or carers where appropriate and where the young person agrees, subject to capacity and safeguarding considerations.

The central point

Good paediatric epilepsy care is bigger than seizure control. It should support the child’s brain development, education, emotional wellbeing, safety, family life and growing independence while making sure complex epilepsy receives specialist care early enough.

The goal is not simply to get a child through childhood with epilepsy. It is to help them reach adulthood with the knowledge, confidence, support and continuity of care they need.

Where next?

Epilepsy Syndromes →
Seizure Types →
Diagnosis and Tests →
Mental Health & Epilepsy →
Safety & Everyday Risks →
Back to Understanding Epilepsy →

Related neurodevelopmental conditions

ADHD and Epilepsy →
Autism and Epilepsy →

Sources

Medical note: This page is for education and awareness. Individual children and young people need personalised assessment and care based on their seizure type, epilepsy syndrome, development, treatment, comorbidities and circumstances.

Related researched deep dives

Evidence checked: September 2026.