NSE : Information on epilepsy : Children: a guide for parents and carers

Epilepsy affects at least 456,000 people in the UK. Although epilepsy can start at any age it often begins in childhood. This leaflet gives a brief introduction to epilepsy, the ways in which it can affect children, and looks at some of the issues surrounding epilepsy and education.

You might find these pages useful if you are a parent of a child with epilepsy, if you look after children with epilepsy or if you are a teacher.

Epilepsy and seizures

The brain is made up of millions of nerve cells that control the body’s functions, senses and thoughts. The nerve cells do this by passing electrical signals to each other. In some people, the signals can suddenly be interrupted which makes the person have an epileptic seizure (sometimes called ‘fit’ or ‘attack’).
More general information about epilepsy.

What are seizures?

The word ‘seizure’ describes any sudden, short event where there is a change in a person’s understanding of where they are or what they are doing, their behaviour or their feelings.

In this context when we say ‘seizure’ we always mean an epileptic seizure, but there are different reasons why a person might have a seizure. In childhood, seizures can happen for a number of reasons including fainting (syncope), or febrile convulsions - a seizure caused by a sudden rise in body temperature that often happens when a young child is ill.

Epileptic seizures

The brain has many different tasks; it controls personality, mood, memory, movement, consciousness and our senses. Any of these functions could be affected if someone has an epileptic seizure.

Epileptic seizures can look different from child to child. The type of epileptic seizure a child has depends on which area of their brain is affected. Seizures can cause:
• jerking of the body (convulsions);
• strange or confused behaviour;
• blank moments when the child is briefly unconscious; or
• unusual sensations - for example a funny taste in the mouth, or pins and needles.

Why has my child got epilepsy?

There are lots of reasons why a child may have epilepsy. Some children develop epilepsy as a result of the brain being injured in some way. This could be because of a severe head injury; difficulties at birth; or a serious infection of the brain - such as meningitis. Epilepsy with a known cause like this is called symptomatic epilepsy. However, for most people with epilepsy, no cause can be found, and this is called idiopathic epilepsy.

Will my other children develop epilepsy?

Everyone has a level of resistance to seizures. This is included in the genetic make up passed from parent to child. A person with a low seizure threshold may start to have seizures without any other reason. However, having a low threshold does not mean that seizures will always start. For example other children in the family may have a similar threshold but may not have seizures or develop epilepsy.

Diagnosis and treatment

How is epilepsy diagnosed?

If your child has had more than one seizure, your GP will usually refer them to a paediatrician - a doctor who specialises in treating children. If you have seen your child have a seizure you may be asked to describe in as much detail as possible what happened before, during and after the seizure. This description is a very important part of the diagnosis because it helps the paediatrician understand exactly what has been happening. If your child is old enough, the doctor may ask them what they can remember about the seizure.

The paediatrician may also suggest a few tests to help with the diagnosis. On their own the tests used cannot diagnose epilepsy, but they can give extra information to help find out why your child is having seizures.
More information on diagnosing epilepsy.

What is a childhood syndrome?

There are many different childhood syndromes, but not every child with epilepsy has a childhood syndrome. If your child has been diagnosed with a childhood syndrome it means their seizures have specific characteristics.

Each childhood syndrome has a typical seizure pattern; a typical age when seizures start; and shows a certain reading when an electroencephalogram (EEG) is taken. An EEG records the electrical activity of the brain by picking up the electrical signals from the brain cells. Syndromes follow a definite pattern, which means that your child’s paediatrician may be able to predict.

For information about individual syndromes, call the Epilepsy Helpline on 01494 601 400.

Who is responsible for my child’s medical care?

The professionals who may be involved in your child’s medical care 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 care between appointments with the paediatrician.
A person usually starts to see a neurologist when they are around 16-18 years old.

How is epilepsy treated?

Most people with epilepsy take anti-epileptic drugs (AEDs) to stop seizures from happening. Your child’s paediatrician will decide with you (and with your child if they are old enough) if AEDs are the best choice for them. Although AEDs aim to stop seizures from happening they do not stop seizures whilst they are happening and they do not cure epilepsy. Most people stop having seizures once the right AEDs are found.

Like all drugs, AEDs can cause side effects in some people. The side effects often go away as the body gets used to the medication. Lowering the dose may also reduce side effects. If you or your child are concerned about any aspect of the medication you can talk to their GP, paediatrician, epilepsy nurse (if your child has one) or your pharmacist.

Medication should never be increased, lowered or stopped without first consulting the doctor. Suddenly stopping medication can cause seizures to start again or may make seizures worse.
More information on children's medication

Although most children with epilepsy have their seizures controlled with AEDs, this doesn’t happen for every child. However there are other ways to treat epilepsy that might be considered if AEDs don’t help your child.

For information about other ways to treat epilepsy, call the Epilepsy Helpline on 01494 601 400.

Can other things trigger seizures?

Some children’s seizures happen in response to certain triggers such as stress, over-excitement, boredom or lack of sleep. You might find it helpful to keep a diary of seizures to see if there are any patterns that show when your child is likely to have seizures. If you can recognise triggers then avoiding them, as far as possible, could help to make seizures less frequent.

Will my child’s epilepsy change as they get older?

It is not unusual for a person’s seizures to change either in type or frequency over time.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, the doctors may suggest slowly withdrawing medication completely.

Some girls find that their seizures change when their periods start, becoming more frequent around the time of their period. If this happens the doctor may discuss making changes to their medication to help at that particular time.

If your child has a childhood syndrome their doctor may already have told you about what is likely to happen with their epilepsy as they get older.

Who needs to know about my child’s epilepsy?

Deciding who to tell about your child’s epilepsy, and what to tell them, is a decision you and your child can make together. It could be helpful to tell the people who spend time with your child (for example teachers or other family members) about the epilepsy so that they feel prepared if a seizure happens.

How could having epilepsy affect my child’s life?

Leisure activities

Most children with epilepsy can participate in the same activities as other children. Simple precautions can help make activities such as swimming and cycling safer for everyone with epilepsy whatever their age. For example making sure there is someone with your child who knows how to help if a seizure happens.

Immunisation

Some parents feel nervous about the decision to immunise their child, whether their child has epilepsy or not. The Department for Health recommend that every child is immunised against infectious diseases. Having epilepsy does not mean that a child cannot be immunised, but the decision to immunise should always be the parents.

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

Behaviour

For many children, having epilepsy and taking anti-epileptic drugs will have no effect on 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 are feeling about having epilepsy, and how it affects them. Giving your child the chance to talk about their feelings with someone they trust could help them to feel better about things. It can also be important for them to feel that they are being treated the same as their siblings or friends, and that having epilepsy isn’t holding them back.

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 can talk about it with their doctor or epilepsy specialist nurse. Behaviour changes and problems can occur in all children regardless of having epilepsy and for many may just be part of growing up.

Adolescence

Adolescence is a time when young people start to find their independence. Like all teenagers, young people with epilepsy will probably want to make their own choices about their lives. When making choices it helps if they know the effects their decision could have on their epilepsy. For example, late nights, experimenting with alcohol and recreational drugs, and emotional stress, are often typical parts of teenage life. For some people though, these can make seizures more likely to happen.

Some teenagers find epilepsy difficult to live with, especially if they experience frequent seizures or side effects from their medication. They may decide to stop visiting the doctor or to stop taking their medication. It may help them to discuss their feelings and choices with someone who they feel comfortable talking to. Having people who will support them can encourage young people to take control in making decisions about their epilepsy.

Will epilepsy have an affect on my child's education?

From the age of four all children are entitled to free education until they are 18. Most children with epilepsy - around 80% -attend mainstream schools and colleges. Because epilepsy is a very individual condition the effect that it might have on a person’s education and learning can vary. Knowing what an individual’s epilepsy is like can help when making decisions with them throughout their education. Encouraging self-confidence is one of the best ways families and teachers can support anyone to achieve their full potential, whether or not they have epilepsy.

If your child has epilepsy you might want to tell the school about their epilepsy and what to do if a seizure happens. Because epilepsy can affect people in different ways it is important that the school is aware of what is best for each child with epilepsy should they have a seizure, rather than assuming that epilepsy affects everyone in the same way.
More information on seizures.
More information on first aid.

For some children, having epilepsy will not affect their ability to learn or achieve academically, but others may need extra support. About one in five children have some sort of learning difficulty at some time in their school life, whether or not they have epilepsy. Most children are able to overcome these difficulties. 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; it is often called special education provision.

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. There is usually a teacher at each school who has a responsibility for children with special educational needs. It is their role to work with you, your child, the school, and the Local Education Authority (LEA). This support can continue throughout further and higher education if it is needed.

To decide what help a child needs the LEA might want your child to have a statutory assessment – which may produce a statement of special educational needs. This process is sometimes called “being statemented”. The statement will describe all the help the LEA thinks your child needs, including: non-educational needs (for example transport to school); the long term goals to be met by that help (for example improving reading); and arranging regular reviews of your child’s progress to see how they’re getting on.

Examinations

Having epilepsy does not usually affect someone’s ability to be assessed in an exam situation. However, for those people who find they are more likely to have seizures in stressful situations, or at certain times of the day, exams may need particular consideration.
Discussing any concerns about exams with the school, college or university may help to assess if any particular requirements are needed during this time. If seizures are uncontrolled and are thought likely to affect or interrupt an exam then the Joint Council of Examination Boards may also be able to offer advice or support. It is best approached through the school, college or university.

Practical activities

Most people with epilepsy have their seizures controlled and can take part in most practical activities. For those people who have seizures the choice of whether or not to participate in practical lessons - for example science or PE - needs to be made on an individual basis, taking into account the view of the person concerned. Consideration should also be given to the type and frequency of their seizures, the level of seizure control they have, and the risks that may be associated with that particular activity. It can also help if there are people around who know what to do if that person has a seizure.

Swimming

It is essential that the swimming teacher and lifeguard have a full understanding of a person’s epilepsy so they can quickly identify if the person needs help in the water.

Some schools use the ‘Buddy System’ which pairs pupils up so that everyone has someone to look out for them in the water. This could help a child with epilepsy feel they are not being over protected, and increase everyone’s safety in the water.

Disability Discrimination Act - DDA

Epilepsy is a condition that is covered by the DDA, even if a person’s seizures are controlled with medication. The DDA also covers education. The DDA means it is unlawful for education and training providers to discriminate against people with disabilities. This includes school-run nurseries, primary school, secondary school, further and higher education - including extra curricular activities. The rights of children who go to private nurseries or playgroups are also protected by the DDA.

Your feelings as a parent

If your child is diagnosed with epilepsy this may leave you dealing with a wide range of emotions - both for your child and for yourself. It can take time to come to terms with a diagnosis and what effect this can have on life. How you feel about the diagnosis may also change over time. Reading about a condition or talking to someone about it can sometimes help. You can get more information about epilepsy from NSE’s Epilepsy Helpline. If you would like to talk to other people in similar situations, there are a number of epilepsy support groups around the country.

If you would like to talk to someone about epilepsy, you can also contact the Epilepsy Helpline on:
01494 601 400 - Monday-Friday 10am-4pm.

Educational support and other organisations

Educational support

Other organisations

Contact a Family (opens in new window)
Provides support groups, and information for parents and families of children with disabilities or medical conditions.

Information on epilepsy: Children and education

A guide for parents and teachers