Epilepsy in children

Epilepsy can begin at any time of life, but it is most often diagnosed in children and in people over the age of 65. Some children have an age-related form of epilepsy, and their seizures resolve by a certain age, while others may have seizures that continue into adulthood. Epilepsy varies from person to person, but many children have seizures that respond well to medication and go on to enjoy a normal, active childhood.

Recognizing epilepsy in children#

Seizures are not always recognized when they first occur, because they do not always look the way people expect. People often picture convulsions, but some seizures are subtle and very brief. In an absence seizure, for example, the child has brief episodes of lost awareness and responsiveness that can be mistaken for daydreaming. This can make diagnosis harder.

Many non-epileptic events can also mimic seizures. Things that may be confused with seizures include:

• Fainting spells
• Breath-holding spells
• Normal sleep jerks
• Daydreaming
• Night terrors
• Migraine
• Heart and stomach problems
• Mental health issues

Febrile convulsions#

Febrile convulsions are seizures brought on by fever during an illness. They tend to run in families. About one in 25 children has a febrile convulsion at some time, most commonly between 6 months and 6 years of age, and up to a third of these children have further convulsions with later fevers.

Having febrile convulsions does not mean a child has epilepsy, and their risk of developing it is no higher than anyone else’s. The risk is slightly higher if there is a family history of epilepsy, if the child has a neurodevelopmental impairment (such as cerebral palsy), or if the child has a complex febrile convulsion, which is one that:

• Happens more than once in 24 hours
• Lasts more than 15 minutes
• Involves only a part or one side of the body

Understanding the diagnosis#

If your child has had a seizure, you will most likely be referred for an EEG (electroencephalogram, a test that measures the electrical activity of the brain) and to a neurologist or pediatrician. An important part of diagnosis is a good description of the seizures and the symptoms around them. Sometimes a video of a seizure is helpful. Tests often come back normal, which is common and does not necessarily mean a seizure did not happen.

Seizure types and epilepsy syndromes#

There are many seizure types, broadly classified as focal (starting in one part of the brain) or generalized. An epilepsy syndrome can be diagnosed when a group of signs and symptoms occur together. To identify a syndrome, doctors look at factors such as the type of seizures, the age at which they start, and the specific pattern they show on EEG.

Identifying a syndrome can help the doctor choose the antiseizure medication best suited to it, and can help predict whether seizures are likely to be easily controlled, limited to childhood, or more persistent.

Some of the more common epilepsy syndromes in childhood include:

• Childhood absence epilepsy (CAE): usually starts between ages 2 and 12. Absence seizures are very brief; the child suddenly stops and stares blankly, as if daydreaming, then just as suddenly resumes the previous activity. They can happen many times a day, are usually well controlled with medication, and tend to stop by puberty.
• Juvenile absence epilepsy (JAE): usually starts between ages 8 and 20. The seizures resemble childhood absence seizures but may last longer and include movements such as eyelid fluttering or chewing. They occur less often, but up to 80 per cent of children with this type also have tonic-clonic seizures. Seizures can be well controlled with medication, but the syndrome is considered lifelong.
• Childhood epilepsy with centrotemporal spikes (Rolandic): onset is usually from 1 to 14 years. Seizures are often focal, with twitching, numbness or tingling of the face or tongue, and may affect speech and cause drooling. They sometimes progress to a tonic-clonic seizure and usually happen in the early stages of sleep. Medication is not always needed, and this type usually resolves by about age 15.
• Juvenile myoclonic epilepsy (JME): can be diagnosed between ages 8 and 25 and tends to run in families. It typically begins with myoclonic seizures soon after waking, which are sudden single jerks of both arms. These can be subtle, making the person seem clumsy or prone to dropping things. Tonic-clonic seizures can also occur and often lead to diagnosis. Seizures can be well controlled with medication and lifestyle changes.
• Temporal lobe epilepsy (TLE): can start at any age and involves focal onset seizures with or without impaired awareness. Seizures are often unusual and may involve confusion and changes in behavior or emotion, and sometimes progress to tonic-clonic seizures.
• Frontal lobe epilepsy (FLE): this focal epilepsy can start at any age and involves focal onset seizures with or without impaired awareness. Seizures are often unusual and may include vigorous physical activity or strong emotions. FLE can be confused with behavioral, psychiatric or sleep disorders such as parasomnias or night terrors, and prolonged monitoring may be needed to make a diagnosis.
• West syndrome (infantile spasms): onset is typically in the first year of life. The very brief spasms cause the baby to stiffen suddenly, often flinging the arms out as the knees pull up and the body bends forward (jack-knife seizures), and the baby usually cries. The spasms occur in clusters and are sometimes mistaken for colic, though colic does not occur in clusters. Many children go on to develop other seizure types in later childhood, including Lennox-Gastaut syndrome, and intellectual disability is usually seen.
• Lennox-Gastaut syndrome (LGS): seizures begin from age 3 to 5. It can include multiple seizure types that are resistant to medication, and intellectual disability is seen in up to 90 per cent of people with this syndrome.

Some less common epilepsy syndromes include generalized epilepsy with febrile seizures plus (GEFS+), severe myoclonic epilepsy of infancy (Dravet syndrome), myoclonic epilepsy of infancy (Doose syndrome), Landau-Kleffner syndrome (LKS) and Rasmussen’s syndrome.

Treatment#

Medications used to control seizures are called antiseizure medications (ASMs). They are the first line of treatment. They are not a cure, but they aim to lessen or stop seizures, ideally with few or no side effects.

Starting a child on medication can be a difficult decision, and most parents worry about side effects and long-term effects. Whether to prescribe medication, and which one, depends on factors such as:

• The likelihood of further seizures
• The type of seizures and how often they occur
• The risks the seizures may pose
• The age of the child
• The presence of developmental or behavioral problems
• The wishes and willingness of the child and family to start medication

Treatment is not recommended lightly, and the decision is usually based on sound clinical evidence and the family’s values. Medications are effective for about two thirds of people with epilepsy, although it may take time to find the right one or the right combination. If several medications fail to control seizures, other options may be considered, such as surgery, vagus nerve stimulation, or dietary management.

Using medications safely#

Most ASMs are started at a low dose and slowly increased until seizures stop or side effects appear. The dose may need adjusting as the child grows and gains weight, or if other medications are added. A second ASM may be added or substituted if the first does not fully control seizures or causes unwanted side effects.

Many ASMs interact with other medicines, causing reactions or making them less effective. Speak to your doctor or pharmacist before giving your child any other medication or supplement, even over-the-counter remedies for coughs and colds.

Never stop ASMs suddenly, as this can trigger seizures, sometimes more severe than usual. Instead, wean your child off slowly under your doctor’s guidance to avoid withdrawal effects. ASMs are not prescribed long term for seizures that are not considered epilepsy, such as febrile convulsions.

Epilepsy and the family#

The unpredictable nature of epilepsy can cause a great deal of worry for children and their parents. People with epilepsy have a higher risk of depression and anxiety. Parents of children with epilepsy can experience isolation, stigma and the financial strain of extra medical appointments and time off work, and they report higher levels of anxiety and depression than parents of children without a chronic illness. It is important that parents also feel supported, which may include professional psychological support or financial assistance.

Parents who themselves have epilepsy may worry about the effect of their condition on their role as a parent. You may decide to talk with your child about your epilepsy and what to do if you have a seizure. Support services exist for people living with epilepsy if you would like further help.

Siblings can also feel overlooked when one child has additional needs, as can happen with any chronic condition.

Epilepsy and learning#

Most children with epilepsy have the same range of intelligence and abilities as other children. However, some have learning difficulties, which may be due to epilepsy-related factors such as an underlying brain abnormality or how often seizures happen, or to a coexisting condition such as attention deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD).

Night-time seizures can cause daytime drowsiness that affects learning and participation at school, and medication can sometimes add to drowsiness or affect mood and behavior. When a learning difficulty is identified, both medical and educational strategies can help.

If you notice significant changes in your child’s learning, thinking skills, concentration or memory, your child may benefit from a full neuropsychological assessment. A neuropsychologist is trained to understand the relationship between the brain and behavior, thinking skills, and how these can be affected by factors such as epilepsy, medication and mood.

Sport and play#

Children with epilepsy should be encouraged to take part in and enjoy a full school and social life, including recreational activities, with appropriate risk-management strategies in place. Many schools have a seizure policy and arrange for staff to be trained to give medical assistance if emergency medication is needed. The same approach can be applied to recreational activities in the community.

Striking a safe balance between epilepsy, its treatment and suitable exercise can bring children important health benefits. It is uncommon for seizures to be triggered by exercise or sport, and most activities are suitable if the child avoids overexertion, dehydration and low blood sugar (hypoglycemia). Take special care with water sports and activities at height.

Where an activity carries some risk, general restrictions are sometimes imposed unnecessarily. Risks are best assessed for each child, and extra safety precautions or adapting an activity can often lower the risk to an acceptable level. Some activities need closer supervision than others, for example:

• Swimming: supervision by a competent adult is good practice for all children in and around water, whether a pool, beach or bath.
• Cycling: all children should wear a bike helmet and ride away from busy roads.
• Climbing: trees and rocks present risks if the child’s seizures are not well controlled.

Epilepsy and genetics#

Some types of epilepsy can run in families, but even with a genetic form the chance of passing it on is relatively low. For example:

• A sibling of a child with epilepsy may have a slightly higher risk if there is a genetic tendency in the family, but 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 little higher.

Most children will not inherit epilepsy from a parent, though the chance is higher for some types. Genetic risks do not apply to all epilepsies, and in most cases they are low. If you are planning a baby and are concerned about the risks, ask your doctor to explain them or to refer you to a genetic counselor.

Supporting your child#

If your child is diagnosed with epilepsy, it helps to learn as much as you can. Some suggestions:

• Get a clear diagnosis if you can, and seek out information specific to your child, as there are many types of epilepsy.
• Your child will have questions, so answer them clearly. Animations and illustrated guides can help explain seizures and seizure first aid to children.
• Make sure everyone who cares for your child knows how to help if a seizure occurs.
• As your child gets older, help them take responsibility for their epilepsy, such as remembering to take their medication on time without prompting, while keeping a balance between protecting your child and encouraging independence.

Key points#

• Epilepsy is most commonly diagnosed in children, and many children have seizures that respond well to medication.
• Seizures are not always obvious, and several non-epileptic events, including febrile convulsions, can be mistaken for them.
• An accurate diagnosis, often involving a clear description of the seizures and an EEG, guides the choice of treatment.
• Medication controls seizures for about two thirds of people, and ASMs should never be stopped suddenly.
• With sensible precautions, children with epilepsy can take part in a full school, social and physical life.

Where to get help#