Children
Epilepsy in childhood
In the UK, there are an estimated 60,000 children under 18 with epilepsy. Epilepsy can start at any age including childhood. If your child develops epilepsy you may have questions or concerns. This page aims to answer some of these questions and gives a brief introduction to how epilepsy can affect children. It also includes specific information about education for parents and teachers.
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 (sometimes called a ‘fit’ or ‘attack’).
Not all seizures are epileptic. Other conditions that can look like epilepsy include fainting (syncope) due to a drop in blood pressure, and febrile convulsions 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.
What happens during a seizure?
There are many different types of epileptic seizure. The type of epileptic seizure someone has depends on which area of their brain is affected.
There are two main types of seizure: focal seizures (sometimes called partial seizures) and generalised seizures. Focal seizures affect only one side of the brain and generalised seizures affect both sides of the brain. Generally, adults and children have the same types of seizure, although some may be more common in childhood than adulthood.
Different seizures include:
- jerking of the body (convulsions);
- repetitive movements;
- blank moments when the child is briefly unconscious; and
- 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, a child may be aware of what is happening. In other types, a child will be unconscious and have no memory of the seizure afterwards.
Some seizures are more common in childhood. For example, absence seizures which can be very brief and are often mistaken for 'daydreaming' or not paying attention.
Some children may have seizures when they are sleeping (sometimes called 'asleep' or 'nocturnal' seizures). Seizures during sleep can affect sleep patterns and may leave a child feeling tired and confused the next day.
> More information about seizures.
Why does my child have epilepsy?
Some children develop epilepsy as a result of their 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 children, their epilepsy has a genetic cause. This may be inherited from one or both parents, or it may be a change that happened in the child's genes (before they were born). Epilepsy with a likely genetic cause is called idiopathic epilepsy.
> More information about causes of epilepsy.
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 start having seizures for no obvious reason. However having a low seizure threshold doesn't 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.
How is epilepsy diagnosed?
A diagnosis of epilepsy may be considered id your child had had more than one seizure. The GP will will usually refer them to a paediatrician (a doctor who specialises in treating children). You (and your child if they can) may be asked to describe in detail what happened before, during and after the seizure.
Having a video recording of the seizure can help the paediatrician understand what is 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 your child is diagnosed with a childhood epilepsy syndrome, this means their seizures have specific characteristics. These can include the type of seizure or seizures they have; the age when the seizures started; and the specific results of an electroencephalogoram (EEG).
An EEG test is painless, and it records the electrical activity of the brain.
Syndromes follow a particular pattern, which means that the paediatrician may be able to predict how your child's condition will progress. Syndrome can 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.
Treatment for children
Your child’s GP is normally responsible for their general medical care. They may be referred to a paediatrician or paediatric neurologist (a children's doctor who specialises in the brain and the nervous system). An epilepsy specialist nurse may also be involved in their care. Young people usually start to see a specialist in adult services (a neurologist) from around 16 years old.
Anti-epileptic drugs
Most people with epilepsy take anti-epileptic drugs (AEDs) to control their seizures. 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 children stop having seizures once they are on AEDs that suit them. Like all drugs, AEDs can cause side effects for some children. 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. Changing or stopping your child's medication without first talking to the doctor 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, oftern started alongside AEDs, and is supervised by trained medical specialists and dietitians.
Will epilepsy affect my child's life?
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 Epilepsy Society.
Getting enough sleep and well-balanced meals will help keep your child healthy, and may help to reduce their seizures.
Immunisation (vaccination)
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 are concerned about immunisations your child's GP or paediatrician can give you more information.
Further information on immunisation is available from the Department of Health's publication: The Greenbook.
Behaviour
For some 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 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 have concerns 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.
Can epilepsy change as children get older?
Seizures may change over time, either in type or frequency. Some children outgrow thier 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.
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 seeing their doctor or to stop taking their medication. Talking to someone they feel comfortable with can help them to feel supported and encourage them to take control in making decisions about their epilepsy.
> your epilepsy - now and next is Epilepsy Society's guide for young people.
> Our web forum has a section for young people.
> Youthhealthtalk has audio, video and text clips of young people talking about their epilepsy.
How might my child feel?
Having epilepsy can affect a child in different ways. Depending on their age and the type of seizures your child has, the impact may vary.
For some children having a diagnosis of epilepsy will not affect their day to day lives. For others it may be frightening or difficult to understand. They may feel embarrassed, isolated or diffierent in front of their peers. Talking to your child about their concerns may help them to feel more positive.
Most children with epilepsy will have the same hopes and dreams as other children, and seizures need not prevent them from reaching their goals.
Your feelings as a parent
If your child is diagnosed with epilepsy you may have mixed emotions - for your child and for yourself. You may feel worried or relieved and 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.
Our confidential helpline can offer you emotional support, information and time to talk through your feelings. Alternatively you might like to contact other parents through our online forum.
Our helpline can also provide details of there are epilepsy support groups around the country.
School and education
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.
Telling staff at school about your child's epilepsy means they will know what to do if a seizure happens. It is important that the staff are aware of what is best for your child, so they don't assume that epilepsy affects everyone in the same way.
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 who has absence seizures may miss key points in lessons. Having a chance to catch up on what they have missed in class can be helpful of seizures happens frequently. Sometimes a child may need time to recover after a seizure, and may need time to sleep. Seizures at night can disrupt sleep patterns and affect memory for some time afterwards. AEDs can also cause side effects that include tiredness and problems with memory or concentration.
If you feel that your child needs support at school you can talk to their teachers. 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, alongside the school's governing body (often the local authority's education department).
If your child needs extra help, you, the school or the local authority can ask to have a statutory assessment which may produce a 'statement of special educational needs'. The statement describes all the help a 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.
> For more information on education and learning visit Direct Gov.
Parent Partnership Services are funded by the Department of Education and give information, advice and support to parents and carers of children and young people with special educational needs. They also provide information on how individual needs are identified by schools and the local authority.
> More information on the Parent Partnership website.
Information for teachers
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.
Equality Act 2010
The Equality Act came into force in October 2010. The Act replaces and brings together lots of different equality laws, including the Disability Discrimination Act 1995 (DDA).
Epilepsy is a condition that is covered by the Equality Act, 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 Equality Act covers extra curricular activities. It also covers how the curriculam is delivered and so methods of teaching need to treat all pupils fairly and not put any pupils with a disability at a disadvantage. However, the Equality Act does not cover the content of the curriculum.
> More information on the Equality and Human Rights Commission.
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 they are likely to have seizures in stressful situations, or at certain times of the day, this may affect their performance in exams or tests. Tiredness, or memory or concentration problems 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. Doing a risk assessment is also important. 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 (know that a seizure is going to happen)?
- 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, having an individual health care plan for the child means that their medication can be managed and given 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 Department for Education (DfE) publication 'Managing medicines in schools and early years settings' (2005).
Emergency medication
Usually a seizure will stop by itself. However if a seizure continues for more than 30 minutes (or one seizure follows another with no recovery in between) this is known as status epilepticus or 'status'. Status during a tonic clonic (convulsive) seizure is a medical emergency and needs urgent treatment.
Children who go into status may be prescribed emergency medication to help stop prolonged or repeated seizures.
There are two emergency medications used to treat status. Both these drugs are sedatives, which have a calming effect on the brain.
Rectal diazepam - given rectally (into the bottom).
Buccal midazolam - given into the buccal cavity (side of the mouth between the cheek and gum)
If a child has emergency medication there should be a care plan (protocol) in place for giving them emergency medication at school.
Anyone giving these drugs needs specialist training to learn how to do this. Training is available from Epilepsy Society, 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. Epilepsy Society runs free schools awareness sessions for different age groups.
Educational support and other organisations
Advisory Centre for Education
An independent advice centre for parents.
Contact a Family
Provides support groups, and information for parents and families of children with disabilities or medical conditions.
Equality and Human Rights Commission
An independent body, which aims to eliminate discrimination against people with disabilities and promote equality. Has information on education and the Equality Act.
IPSEA (Independent Panel for Special Education Advice
Free independent educational advice for parents of children in England and Wales.
National Parent Partnership Network
Confidential free information, support and advice for parents and carers of young people with special educational needs.
Staying Positive - young people's workshops
Free courses for young people with any health condition from the Expert Patients Programme (EPP CIC).
SKILL - National Bureau for Students with Disabilities
Information on learning, training, work and funding.
© Epilepsy Society
Information produced in August 2011.
