Children and education
A guide for parents and teachers
Epilepsy affects at least 456,000 people in the UK. Although epilepsy can start at any age it often begins in childhood. In the UK, there are an estimated 58,000 children under 18 with epilepsy. This page gives a brief introduction to epilepsy, and how it can affect children. The second half of this page is specifically about epilepsy and education up to 18 years.
What is epilepsy?
Epilepsy is a neurological condition (affecting the brain and nervous system) where a person has a tendency to have seizures that start in the brain. The brain is made up of millions of nerve cells that use electrical signals to control the body’s functions, senses and thoughts. If the signals are disrupted, the person may have an epileptic seizure (also called a ‘fit’ or ‘attack’).
Not all seizures are epileptic. Other conditions that can look like epilepsy include fainting (syncope) which is due to a drop in blood pressure, and febrile convulsions which are due to a sudden rise in body temperature when a young child is ill. These are not epileptic seizures because they are not caused by disrupted brain activity. On this page when we say ‘seizure’ we mean an epileptic seizure.
> More information about epilepsy.
Epileptic seizures
There are many different types of epileptic seizure. The type of epileptic seizure someone has depends on which area of their brain is affected. Different seizures include:
- jerking of the body (convulsions)
- repetitive movements
- blank moments when the child is briefly unconscious
- unusual sensations, such as a strange taste in the mouth or a strange smell, or a rising feeling in the stomach.
In some types of seizure, the person will be aware of what is happening. In other types, the person is unconscious and will have no memory of the seizure afterwards.
> More information about seizures.
Why does my child have epilepsy?
There are many possible causes for epilepsy. Some people develop epilepsy as a result of the brain being injured in some way. This could be due to a severe head injury, difficulties at birth, or an infection which affects the brain such as meningitis. Epilepsy with a known structural cause like this is called symptomatic epilepsy.
For some people, their epilepsy has a genetic cause. This may be inherited from one or both parents, or it may be a new change in the child's genes that happens before they are born. Epilepsy with a likely genetic cause is called idiopathic epilepsy.
> More information about causes of epilepsy.
Will my other children develop epilepsy?
This will depend on whether your child's epilepsy has a genetic cause (see above). Everyone has a level of resistance to seizures, called a seizure threshold. This is included in the genes passed from parent to child. A child with a low seizure threshold may have seizures but a low threshold does not always mean that seizures will start. Other children in the family may have a similar seizure threshold but may not develop epilepsy.
> More information about seizure thresholds.
Diagnosis and treatment
How is epilepsy diagnosed?
Epilepsy may be considered if your child has had more than one seizure. Their GP will usually refer them to a paediatrician - a doctor who specialises in treating children. You (and your child if they are old enough) may be asked to describe in detail what happened before, during and after the seizure. This description is a very important way to help the paediatrician understand what has been happening.
The paediatrician may also suggest a few tests to help with the diagnosis. These tests alone cannot confirm or rule out epilepsy, but they can give extra information to help find out why your child is having seizures.
> More information about diagnosis.
What is a childhood epilepsy syndrome?
If a child has been diagnosed with a childhood epilepsy syndrome, this means their seizures have specific characteristics.
Each childhood syndrome has typical seizures, a typical age when seizures start, and shows a particular reading on an electroencephalogram (EEG). An EEG test is painless, and it records the electrical activity of the brain.
Syndromes follow a definite pattern, which means that your child’s paediatrician may be able to predict how your child's condition will progress. Syndrome vary greatly. Some are called 'benign' which means they will have a good outcome, and usually go away once the child reaches a certain age. Other symdromes are severe and difficult to treat. Some may include other disabilities and may affect a child's development. For more information about syndromes, call the Epilepsy Helpline on 01494 601 400.
Who is responsible for my child’s medical care?
Those involved in your child’s medical care may include a paediatrician, a paediatric neurologist (a children’s doctor who specialises in the brain and nervous system) and an epilepsy specialist nurse. Your child’s GP is normally responsible for their general medical care.
Young people usually start to see a specialist in adult services from around 16 years old.
How is epilepsy treated?
Anti-epileptic drugs
Most people with epilepsy take anti-epileptic drugs (AEDs). The paediatrician can discuss with you whether AEDs are the best option for your child. Although AEDs aim to stop seizures from happening they do not stop seizures while they are happening, and they do not cure epilepsy. Most people stop having seizures once they are on AEDs that suit them.
Like all drugs, AEDs can cause side effects in some people. Some side effects go away as the body gets used to the medication, or if the dose is adjusted. If you are concerned about your child's AEDs you can talk to their paediatrician, epilepsy nurse, GP or pharmacist.
You should never change or stop your child's medication without first consulting the doctor, because this can cause seizures to start again or make seizures worse.
Although AEDs work well for many children, this doesn’t happen for every child. If AEDs don’t help your child, their doctor may consider other ways to treat their epilepsy.
> More information about medication for children (12 and under).
> More information about medication for adults (13 and over).
Ketogenic diet
For some children who still have seizures even though they are on AEDs, the ketogenic diet may help to reduce the number or severity of their seizures. The diet is a medical treatment, and must be supervised by trained medical specialists and dietitians.
Triggers for seizures
Some children’s seizures happen in response to triggers such as stress, excitement, boredom, missed medication or lack of sleep. You might find it helpful to keep a diary of their seizures to see if there are any patterns to when seizures happen. If you can recognise triggers, then avoiding them as far as possible may help to reduce the number of seizures your child has.
> Seizure diaries are available from NSE.
Getting enough sleep and well-balanced meals will help keep your child healthy, and may help to reduce their seizures.
Will my child’s epilepsy change as they get older?
A person’s seizures may change over time, either in type or frequency. Some children outgrow their epilepsy by their mid to late teens. This is called spontaneous remission. If they are taking AEDs, and have been seizure-free for over two years, their doctor may suggest slowly stopping medication.
Some girls find that their seizures become more frequent around the time of their period. Their doctor may suggest adjusting their AEDs around this time to see if that helps.
Will epilepsy affect my child’s life?
Immunisation
Some parents are nervous about immunisation, whether or not their child has epilepsy. The Department of Health recommends that every child is immunised against infectious diseases. This includes children who have epilepsy. If you have concerns about your child being immunised you can talk to their GP or paediatrician.
For information about epilepsy and immunisation, call the Epilepsy Helpline on 01494 601 400.
Further information on immunisation is available from the Department of Health's publication: The Greenbook (opens in a new window).
Behaviour
For many children, having epilepsy and taking AEDs will not affect their behaviour. However, some people may notice a change in their child’s mood or behaviour, such as becoming moody, irritable or withdrawn. Having epilepsy does not change someone’s character, but some children may be responding to how they feel about having epilepsy, and how it affects them. They may also want to be treated the same as their siblings or friends, and to feel that having epilepsy isn’t holding them back. Encouraging your child to talk about epilepsy may help them feel better.
Behaviour changes and problems can happen in all children regardless of having epilepsy and for many, may just be part of growing up. In a few children, irritable or hyperactive behaviour may be a side effect of AEDs. If you are concerned about changes in your child’s behaviour, you may want to talk to their doctor or epilepsy specialist nurse.
Leisure activities
Most children with epilepsy can take part in the same activities as other children. Simple measures can help make activities such as swimming and cycling safer. For example, making sure there is someone with your child who knows how to help if a seizure happens.
> More information about epilepsy and leisure.
Adolescence
Adolescence is when many young people become more independent and will want to make their own choices about their lives. Finding out what affects their epilepsy can be part of making informed choices. Late nights, emotional stress, and trying alcohol or recreational drugs can be typical parts of teenage life. However, all these can make seizures more likely to happen.
Some young people find epilepsy difficult to live with, especially if they have frequent seizures or side effects from their medication. They may decide to stop visiting their doctor or to stop taking their medication. It may help them to talk to someone they feel comfortable with. Feeling supported can encourage young people to take control in making decisions about their epilepsy.
> your epilepsy - now and next is NSE's guide for young people.
> NSE's web forum has a section for young people.
> Youthhealthtalk (opens in a new window) has audio, video and text clips of young people talking about their epilepsy.
Your feelings as a parent
If your child is diagnosed with epilepsy you may have mixed emotions - for your child and for yourself. It can take time to come to terms with a diagnosis and how it might affect family life. How you feel about the diagnosis may also change over time. Reading about epilepsy or talking about it may help. If you would like to talk to other people in similar situations, there are epilepsy support groups around the country - details of support groups are available from the Epilepsy Helpline on 01494 601 400 (Monday-Friday 10am-4pm).
> NSE's web forum has a section for parents.
Epilepsy and education
Information for parents
Epilepsy is a very individual condition, so how it affects someone's education can vary. Knowing as much as possible about your child's epilepsy can help you to make decisions with them about their education.
If your child has epilepsy you may want to tell the school about their epilepsy and what to do if a seizure happens. It is important that the school is aware of what is best for your child, so they don't assume that epilepsy affects everyone in the same way.
For some children, having epilepsy will not affect their ability to learn or achieve academically, but others may need extra time or support in class. For example, a child may need time to recover after a seizure, and they may need to sleep. Seizures can disrupt sleep patterns and affect memory for some time afterwards. Common side effects of AEDs include tiredness and problems with memory or concentration.
If you feel that your child needs extra support you can talk to their teacher or head teacher. Sometimes a teacher may approach you if they notice areas where your child needs extra help.
Special educational needs
A child has special educational needs if they have learning difficulties that need special help at school. This extra help should be available to anyone who needs it, and it is often called special education provision. There may be a special educational needs co-ordinator (SENCO) at the school who can look at your child's needs, along with the governing body of the school. This is often the local authority's education department.
If your child needs extra help, you or the local authority can ask for them to have a statutory assessment which may produce a 'statement of special educational needs'. The statement will describe all the help the local authority thinks your child needs, including educational needs such as improving reading, non-educational needs such as transport to school, and regular reviews to see how your child is getting on.
> There is more information in the education and learning section of the Direct Gov website (opens in a new window).
Information for teachers
Teaching pupils with epilepsy
Because epilepsy varies so much from person to person, it can be helpful to find out as much as possible about a child's epilepsy to avoid making assumptions about how their condition might affect their learning.
If parents feel supported by the school, they may be more likely to give information about their child's epilepsy.
Disability Discrimination Act (DDA)
Epilepsy is a condition that is covered by the DDA, even if a person’s seizures are controlled with medication. This means it is unlawful for education and training providers to discriminate against people with disabilities. This includes nurseries and playgroups, primary and secondary schools, and further and higher education. The DDA covers the whole curriculum and extra curricular activities.
Computers and lights
For most people with epilepsy, using a computer will not trigger a seizure. Up to 5% of people with epilepsy have photosensitive epilepsy, where seizures are triggered by flashing or flickering lights or by geometric patterns such as checks or stripes.
Computers and TVs with a flat screen do not flicker and so are less likely to trigger seizures than screens that flicker. However, fast-moving or flashing images on the screen could be a trigger. Other photosensitive triggers include flickering overhead lights, and sunlight creating patterns through blinds.
Exams and tests
Whether a child's epilepsy affects their ability to do exams or tests will depend on their individual epilepsy. If a child is more likely to have seizures in stressful situations, or at certain times of the day, this may affect their performance in exams or tests. Any problems with tiredness, memory or concentration may also affect exams. Discussing concerns with the child and their parents may help to decide whether they need any special arrangements for exams.
Practical activities and lessons
Safety is important for all children, especially during practical activities and lessons, such as science or PE. Epilepsy does not need to stop a child from doing an activity, as long as they are safe. Those responsible for their care need to know how their epilepsy affects them, and what to do if a seizure happens. This also applies to extra curricular activities.
If a child has seizures, you can discuss any concerns about activities with them and their parents. Useful questions to ask include the following.
- What are the risks to safety for any child involved in this activity?
- What happens to the child during their seizures?
- Do they have a warning beforehand?
- What would help make the activity safer for them?
Swimming
It is essential that the swimming teacher and lifeguards fully understand a child's epilepsy so they can quickly see if the child is having a seizure in the water.
Some schools use a ‘buddy system’ which pairs pupils up so that everyone has someone to look out for them in the water. This may help a child feel they are being treated the same as the other children, as well as increasing everyone’s safety in the water.
Medication at school
Most children with epilepsy take AEDs to prevent seizures (see above). AEDs are usually taken once a day, or twice a day with a 12 hour interval, which usually means this happens outside school hours.
If a child needs to take AEDs at school, an individual health care plan for the child means that their medication can be managed effectively. This plan needs to be arranged by the school and agreed with the school's governing body and the child's family.
Sample health care plans and other forms relating to giving medication at school can be downloaded for free as part of the DfES publication 'Managing medicines in schools and early years settings' (2005) (opens in a new window).
Emergency medication
AEDs do not stop a seizure once it has started. A small number of children with epilepsy are prescribed emergency medication to help stop seizures that are prolonged or that do not stop by themselves. There should be a care plan (protocol) for emergency medication for each child. Sample care plans for the use of emergency medication at school can be downloaded free of charge from 'Managing medicines in schools and early years settings' (2005) (opens in a new window).
Emergency medications include rectal diazepam and buccal midazolam. Anyone giving these drugs needs specialist training. Training is available from NSE, or it may be arranged by the local authority or the child's medical professionals.
How will other pupils feel about epilepsy?
Generally, people feel happier and more confident about epilepsy when they understand it, and know what to do if someone has a seizure. Learning about epilepsy in the classroom can be good way to introduce information about the condition, without any children with epilepsy feeling that they are singled out. NSE runs free schools awareness sessions for different age groups.
Educational support and other organisations
Advisory Centre for Education - ACE (opens in new window)
An independent advice centre for parents.
IPSEA (Independent Panel for Special Education Advice (opens in new window)
Free independent educational advice for parents of children in England and Wales.
Contact a Family (opens in new window)
Provides support groups, and information for parents and families of children with disabilities or medical conditions.
Equality and Human Rights Commission (opens in new window)
An independent body, which aims to eliminate discrimination against people with disabilities and promote equality. Has information on education and the DDA.
Staying Positive - young people's workshops (opens in new window)
Free courses for young people with any health condition from the Expert Patients Programme (EPP CIC).
SKILL - National Bureau for Students with Disabilities (opens in new window)
Information on learning, training, work and funding.
© The National Society for Epilepsy
Information produced in July 2009
