Epilepsy in children

About epilepsy in children

Epilepsy can begin at any time of life, but is most commonly diagnosed in children and people over the age of 65.

Some children have age-related epilepsy and their seizures will stop by a certain age. Others may continue to have seizures into adulthood.

Although epilepsy varies from person to person, many children respond well to medication and they can take part in regular everyday childhood activities.

Recognising epilepsy in children

Some seizures in children are not always easy to recognise when they first happen.

People often think seizures always involve shaking or convulsing, but this is not always the case. Some seizures can be subtle and very brief, and not recognisable to others as a seizure. When epileptic seizures often don’t look the way people expect them to, this can sometimes delay diagnosis.

There are also many non-epileptic events that can look like seizures, which can add to the confusion and delay diagnosis.

Some childhood events that may be confused with seizures are:

• fainting
• breath-holding spells
• normal sleep jerks
• daydreaming
• night terrors
• migraine
• heart and stomach problems
• mental health issues.

Febrile convulsions

Febrile convulsions are seizures triggered by a fever during an illness. About one in 25 children has a febrile convulsion at some point. This is most commonly between the ages of 6 months and 6 years. They tend to occur in families.

Up to one third of children will have further febrile convulsions with future fevers.

Having a febrile convulsion does not mean the child has epilepsy, and most children are not at increased risk of developing epilepsy.

Understanding the diagnosis of epilepsy

If your child has had a seizure it is most likely you will have received a referral for appointments with a neurologist or paediatrician, an EEG (a medical test used to measure the electrical activity of the brain).

An important part of epilepsy diagnosis is a good description of the seizure(s) and symptoms surrounding it. Sometimes a video of a seizure can be helpful.

Tests can often return normal, but this does not necessarily mean a seizure didn’t happen.

Epilepsy syndromes

There are many different seizure types. Broadly, seizures are mostly classified as:

• focal
• generalised

For more information, see Epilepsy.

An epilepsy syndrome can be diagnosed when a group of signs and symptoms occur together. Some of the signs and symptoms that doctors look for include:

• the type of seizures
• the age at which they start
• the specific pattern they show on EEG.

A diagnosis can help with choosing the most appropriate medication, and providing clues about whether the seizures are likely to be easily controlled, whether they are likely to be limited to childhood, or if the condition may continue longer.

There are many epilepsy syndromes. Some of the more common types of epilepsy or epilepsy syndromes in childhood include:

• Childhood absence epilepsy (CAE) – Begins in early childhood and causes frequent, very brief 'staring' episodes that can look like daydreaming. Seizures are usually well controlled with medication and often stop by puberty.
• Juvenile absence epilepsy (JAE) – Starts in late childhood or adolescence and involves infrequent absence seizures that may last longer and include small movements like eyelid fluttering. Many people also have tonic-clonic seizures. It usually responds well to medication but is lifelong.
• Self-Limited Epilepsy with Centrotemporal Spikes (SECTS) (Rolandic Epilepsy) – A common childhood epilepsy with focal seizures affecting the face or mouth, sometimes causing speech problems or drooling, often during sleep. Medication may not be needed and seizures usually stop by the teenage years.
• Juvenile myoclonic epilepsy (JME) – Typically begins in adolescence with sudden upper body muscle jerks (myoclonic seizures), often soon after waking, and may include tonic-clonic seizures. It often runs in families and is usually well controlled with medication and lifestyle management.
• Temporal lobe epilepsy (TLE) – Can start at any age and causes focal seizures that may involve confusion, unusual feelings, or changes in behaviour or emotions. Seizures may sometimes progress to tonic-clonic seizures.
• Frontal lobe epilepsy (FLE) – Can start at any age and often causes brief, often unusual seizures with sudden movements or emotional changes. Seizures can be difficult to identify as seizures, and may be confused with sleep or behavioural conditions.
• West syndrome or infantile spasms – Begins in infancy and causes brief spasms where the baby suddenly stiffens or bends forward, often in clusters. It is a serious condition that can affect development and may lead to other seizures and epilepsy syndromes later in childhood.
• Lennox-Gastaut syndrome (LGS) – Starts in early childhood and involves multiple seizure types that are difficult to control. Developmental and learning difficulties are common.

Treatment of epilepsy

Medications used to control seizures are called antiseizure medications (ASMs). The decision to treat a child with medication depends on the risk of further seizures against the potential risks and benefits of medication.

Medication is the first line of treatment for epilepsy. It is not a cure, but aims to lessen or stop the seizures, preferably with few or no side-effects.

Starting a child on medication can be a difficult choice. Most parents worry about side effects and long-term effects of taking medications.

Medications are effective for about two thirds of people with epilepsy. It may take time to find the right medication or combination of medications. If several medications can't control seizures, other treatment may include:

• surgery
• vagus nerve stimulation
• dietary management.

General information about medications

Most ASMs are started at a low dose and slowly increased until seizures no longer occur or if there are unwanted side effects. The dose may need to increase as the child grows and their weight increases.

A second ASM may be added or substituted if the first is not fully effective in stopping seizures, or if it caused unwanted side effects.

Many ASMs interact with other medications, causing unwanted reactions or reducing their effectiveness. Speak to your doctor or pharmacist before giving your child any other medication or supplement, even over-the-counter medicines for coughs and colds.

Never stop ASMs suddenly. This can cause seizures – sometimes more severe than usual. ASMs need to be weaned, under the guidance of your doctor, to avoid withdrawal side effects.

ASMs are not used long term for seizures that aren’t epilepsy, such as febrile convulsions.

Epilepsy and the family

The unpredictable nature of epilepsy can be stressful for both children and parents.

People with epilepsy have a higher risk of experiencing depression and anxiety.

Parents of children with epilepsy may also face extra pressures such as isolation, stigma, financial strain from medical appointments and medications, and time away from work. Support for parents is important and may include counselling, peer support or financial help.

Parents who have epilepsy themselves may worry about how their condition affects their parenting. Talking with children about epilepsy and what to do during a seizure can help everyone feel prepared. The Epilepsy Foundation’s Information Line (Tel. 1300 761 487) is available to support parents living with epilepsy.

Siblings can sometimes feel overlooked when one child has additional needs. This is common across many conditions, not just epilepsy. Siblings Australia offers helpful resources.

Epilepsy and learning

Most children with epilepsy have the same intelligence and abilities as other children. However, some children with epilepsy will have learning difficulties. This can be related to:

• the cause of the epilepsy
• how often seizures happen
• attention deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD)
• tiredness due to night-time seizures
• side effects from medication, causing drowsiness, changes in mood or behaviour difficulties.

There are medical and educational strategies to support children with learning problems.

The Epilepsy Foundation has also developed a program called Epilepsy Smart Schools. This national program provides a range of information and classroom supports for families, teachers and children living with epilepsy.

If you notice changes in your child's learning, thinking skills, concentration or memory, a full neuropsychological assessment may be helpful. A neuropsychologist is trained to understand how the brain affects learning, behaviour, and thinking skills and how these can be influenced by epilepsy, medication and mood.

For more information, see Epilepsy and learning.

Epilepsy – sport and play

Children with epilepsy should be encouraged to take part in sport, play and social activities, just like other children. With the right planning and safety measures, most recreational activities can be enjoyed safely.

The Victorian Department of Education Epilepsy and Seizure policy states that schools are required to ensure appropriate health and management plans are in place for students with epilepsy. It also states that staff should be trained by a recognised epilepsy provider to provide medical assistance in cases where emergency medication is required. The same approach can be applied to all recreational activities in the community.

It's uncommon for exercise or sports to trigger seizures. Most sports are suitable as long as the child avoids overexertion, dehydration and low blood sugar (hypoglycaemia). Take extra care with activities such as water sports, or activities involving heights.

Rather than placing unnecessary restrictions on children with epilepsy, risks should be assessed individually. Many activities can be made safer with supervision or simple adjustments. For example:

• Swimming– supervision by a competent adult is important for all children in and around water, whether that is a pool, beach or bath.
• Cycling – all children should wear a bike helmet and cycle away from busy roads.
• Climbing – extra caution is needed if seizures are not well controlled.

With sensible precautions, most children with epilepsy can enjoy an active and healthy lifestyle.

Epilepsy and genetics

Some types of epilepsy can run in families. Even if your family has a genetic form of epilepsy, the chances of passing it on are relatively low. For instance:

• A sibling of a child with epilepsy may have a slightly higher risk of developing epilepsy if there is a genetic tendency in the family. Even so, most siblings will not develop epilepsy.
• The risk for children whose father has epilepsy is only slightly higher.
• If the mother has epilepsy and the father does not, the risk is still less than 5 in 100.
• If both parents have epilepsy, the risk is a bit higher. Most children will not inherit epilepsy from a parent, but the chance of inheriting some types of epilepsy is higher.

If you’re thinking about having a baby and are worried about epilepsy in the family, talk to your doctor. They can explain any risks that apply to your situation or refer you to a genetic counsellor. Not all types of epilepsy carry a genetic risk.

For more information about genetics and epilepsy, see the Paediatric Epilepsy Network NSW.

Epilepsy support and information

If your child is diagnosed with epilepsy, it’s a good idea to learn as much as you can. Some suggestions that may help include:

• There are many types of epilepsy. Get a clear diagnosis if you can and seek out information that is specific to your child.
• Your child will have questions. There are some great animations to help explain to your child such as Understanding epilepsy digital comic with narrative.
• Make sure that anyone who cares for your child knows what to do if a seizure occurs.
• A good first aid seizure animation for childrenis also available. Or a first aid seizure animation for adults.
• The Epilepsy Foundation webinar provides information on Epilepsy During the School Years.
• As your child gets older, it’s important to help them take responsibility– for example, remembering to take their medication at the right times.
• Remember to keep a balance between protecting your child and fostering independence.

Where to get help

• Your GP (doctor)
• Your paediatrician
• Your paediatric neurologist
• Nurse-on-Call Tel. 1300 60 60 24
• Epilepsy Action Australia Tel. 1300 37 45 37 or book a telehealth appointment with an epilepsy nurse
• Epilepsy Action Australia have animated seizure first-aid videos for adults and children
• The National Epilepsy Support Service (NESS) Tel. 1300 761 487 or email: support@epilepsysmart.org.au – available for support and information
• Facebook support group for parents of children with epilepsy:
  • Epilepsy Parents Australia
  • Parents of Children with Epilepsy – Australia