Kids Health Info

Epilepsy

  • Epilepsy is a brain disorder that leads to a person having repeated seizures (previously called fits). About one in 200 children has epilepsy. During seizures, there is abnormal excessive electrical activity in the brain, and this causes the person to convulse (their muscles jerk), fall, or behave strangely (e.g. stare into space, not respond when spoken to).

    One in 20 children will have at least one seizure during their childhood – often a febrile convulsion, which is a seizure associated with a high temperature. A once-off seizure, febrile convulsions and seizures during acute illnesses are not considered epilepsy. Less than five per cent of children who have febrile convulsions go on to develop epilepsy. See our fact sheet Febrile convulsions.

    Epileptic seizures are not usually dangerous. However, a person is at risk of being harmed if they are in a dangerous environment when a seizure occurs, for instance if they are in a swimming pool, driving a car or climbing a ladder. Children with epilepsy can usually lead a normal and active life, but they need to take care with certain activities, such as swimming.

    Signs and symptoms of epilepsy

    The symptoms of epileptic seizures can vary a great deal, and depend on what parts of the brain are affected. If your child has epilepsy, they may have:

    • Sensory disturbances – tingling; numbness; changes to what they see, hear or smell; or unusual feelings that may be hard for your child to describe.
    • Abnormal movements – limp, stiff or jerking movements or postures, which may occur with loss of consciousness and shallow or noisy breathing.
    • Abnormal behaviour – confused or automatic movements, such as picking at clothing, chewing and swallowing; or appearing afraid.

    When to see a doctor

    The first time your child has a seizure, call an ambulance immediately. Your child may be referred to a specialist. It is important that your child's epilepsy is correctly diagnosed and treated by a children's doctor (paediatrician) with expertise in epilepsy or by a doctor who specialises in childhood disorders of the brain (paediatric neurologist).

    What causes epilepsy?

    For most children with epilepsy, the cause is unknown. Epilepsy sometimes runs in families, which indicates that genetics play a part. Sometimes children develop epilepsy after a severe head injury, stroke or brain infection. Epilepsy can also be a result of a brain malformation or benign (non-cancerous) tumour, which may be present from birth.

    Types of seizures

    There are many different types of seizures, but generally they can be classified into two main groups: focal onset seizures and generalised onset seizures.

    Focal onset seizures

    Focal onset seizures happen when the seizure activity begins on one side of the brain. In a focal onset seizure, your child may just stare into space and be unresponsive. If there is convulsing, it may only affect one side of the body.

    Focal onset seizures with reduced awareness may be referred to by doctors as complex partial or focal dyscognitive seizures. 

    Generalised onset seizures

    Generalised onset seizures happen when the seizure activity begins on both sides of the brain at once. The child's awareness and movements are always affected. There are different types of generalised onset seizures, including:

    • tonic-clonic seizures – a sudden loss of awareness, with the child commonly falling to the ground, and with stiffening (tonic) then jerking (clonic) of the muscles
    • absence seizures – your child will stop what they are doing and lose awareness for five to 30 seconds, usually with a blank stare (falling and jerking do not happen)
    • myoclonic seizures – sudden and brief muscle twitches that may involve the whole body or just individual limbs or muscle groups (e.g. the arms)
    • atonic seizures – a sudden loss of muscle tone, which may only involve the head dropping forward, but could cause sudden collapse and falling
    • tonic seizures – generalised muscle stiffening, lasting one to 10 seconds, which can cause your child to fall to the ground.

    Sometimes, focal onset seizures can spread to the other side of the brain, and become 'secondarily generalised', which looks like a tonic-clonic seizure.

    Infantile spasms

    Infantile spasms are a special type of seizure with both focal and generalised features. These often begin between three and six months of age, and appear as brief stiffening movements lasting one to two seconds each. Spasms can involve the whole body or only the head or a part of the face. Spasms typically repeat every few seconds in what is called a cluster, and the infant usually appears to recover or relax between each spasm. Clusters of spasms often occur after waking from sleep.

    How is epilepsy diagnosed?

    Most children who have only one seizure are not diagnosed with epilepsy.

    To make a correct diagnosis, your child's paediatrician or paediatric neurologist will need a detailed description of your child's seizures, medical history, development, learning and behaviour.

    A video recording of your child's seizures is very helpful if seizures happen often or are predictable. What happens during a seizure lets doctors know about what parts of the brain are involved.

    Tests

    Special tests are needed in some children. Your child's doctor will talk to you about the following tests if they are needed.

    • Blood tests –  to check your child's blood sugar and salt levels.
    • EEG –  to record electrical brainwave activity. See our fact sheet Electroencephalography (EEG).
    • Video EEG monitoring – this is a prolonged EEG done in hospital to capture seizure activity. See fact sheet Video EEG monitoring (VEM).
    • MRI – to provide pictures of the brain. See our fact sheet MRI scans.

    Treatment for epilepsy

    Your child's doctor will help you prepare an epilepsy management plan, which details what happens during your child's seizures, how to support your child during a seizure and any emergency procedures or medication. All caregivers, teachers and family members should have a copy of your child's epilepsy management plan and be comfortable with all aspects of their care.

    Medication

    If your child has repeated seizures or is at high risk of this, your doctor may prescribe antiepileptic medication to help prevent further seizures. There are many different medications used for epilepsy. The medication prescribed will depend on:

    • the type of seizure your child has
    • the pattern on the EEG
    • how often the seizures are happening
    • your child's age
    • whether or not your child has any other medical, developmental or behavioural problems.

    Medication is usually taken one to three times daily to prevent seizures.

    Some antiepileptic medicines may be affected by, or have an effect on, other medicines. Always tell your doctor and pharmacist what medications your child is taking before starting any new medications, including complementary or alternative medicines.

    All medications have the possibility of causing side effects. Report any of the following side effects to your doctor if they occur.

    • Some mild side effects are common when starting antiepileptic medications, such as nausea, abdominal pain, dizziness, sleepiness, irritability or anxiety.
    • Some side effects occur if the dose is too high, such as unsteadiness, poor concentration and vomiting.
    • Other side effects are specific to individual medications and only occur in some people, such as rash, blood problems or liver problems.

    It is important that you do not suddenly stop any medication your child is taking for epilepsy, except on medical advice. Doing so may cause a severe or prolonged seizure to occur. If medication is not effective or is causing side effects, it needs to be withdrawn slowly under medical supervision.

    Sometimes, medication is prescribed to treat seizures when they happen. These include giving medications in the nose (intranasal midazolam), in the mouth (buccal midazolam), or up the bottom (rectal diazepam). See our fact sheet Midazolam for seizures.

    Other treatments

    For about one in five children with epilepsy, seizures are not controlled with medication, and other treatments may be considered. These treatment options include:

    • a ketogenic diet – a strict, medically supervised diet that may help reduce seizures in some children
    • epilepsy surgery – this involves removing or disconnecting the abnormal part of the brain where the seizure starts
    • vagus nerve stimulation – insertion of a pulse generator, similar to a heart pacemaker, under the skin on the chest that sends electrical signals to the brain.

    Care at home

    If your child's epilepsy is controlled and medication is successfully preventing seizures, then your child should be encouraged to live a normal and active life.

    Your child's doctor will give you advice about any activities your child should not do, and for how long.

    You should know what to do and how to help when your child has a seizure. Any adult looking after your child should be aware of their seizures and what to do. For information about first aid management for a seizure and how to keep your child safe, see our fact sheet Seizures – safety issues and how to help.

    Occasionally, seizures can be prolonged or complicated by serious breathing difficulties or aspiration (inhaling vomit or other fluids into the lungs). Rarely, children with epilepsy can die unexpectedly. This is called sudden unexpected death in epilepsy (SUDEP). SUDEP is very rare in most forms of epilepsy that affect children, especially if the child is taking regular antiepileptic medication and their seizures are controlled.  

    There are some types of seizures and some associated neurological conditions where the risk of SUDEP is greater. Your child's doctor will discuss these risks with you.

    Key points to remember

    • Epilepsy is a brain disorder that causes repeated seizures. The symptoms can vary greatly.
    • It is important that your child's epilepsy is correctly diagnosed by a paediatrician or paediatric neurologist with expertise in epilepsy.
    • Do not suddenly stop any medication your child is taking for epilepsy, except on medical advice.
    • Children with epilepsy that is controlled should be encouraged to live a normal and active life, with appropriate safety precautions.
    • Any adult looking after your child should be aware of your child's seizures and what to do if a seizure occurs.

    For more information

    Common questions our doctors are asked

    Will my child outgrow her epilepsy?

    Many childhood types of epilepsy are self-limited and children can be expected to outgrow them. For children who are treated with antiepileptic medication and have controlled seizures over time, most will not have recurrent seizures after antiepileptic medication is withdrawn. Whether your child will outgrow their epilepsy depends on the cause of the epilepsy (if known), the specific type of epilepsy and the response to treatment.

    Can I do anything to reduce the risk of SUDEP?

    SUDEP risk is increased when seizures are poorly controlled, particularly when tonic-clonic seizures and seizures occurring around sleep are poorly controlled. Children have a much lower risk of SUDEP than adults. Having an accurate epilepsy diagnosis, taking medication that is appropriate for that diagnosis, and discussing any medication changes with your doctor is the best strategy for avoiding poorly controlled seizures and reducing SUDEP risk.


    Developed by The Royal Children's Hospital Neurology department. We acknowledge the input of RCH consumers and carers.

    Reviewed June 2018.

    Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit www.rchfoundation.org.au.

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This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital, Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.