The prognosis for a child with epilepsy deals with more than just whether their seizures will continue, stay under control or go away. It includes the child’s performance in school, whether they are likely to have social or behavioural problems, whether they will be able to work, their family and personal relationships over the long term and their overall quality of life. Most research looks at seizure control, but there is some information about these other outcomes as well.
Factors affecting the prognosis
An individual child’s prognosis depends on many different factors, including:
- the results of any neuroimaging studies, such as an MRI, if your child's doctor thinks these are appropriate
- the epilepsy syndrome, if it was identified
- the cause of epilepsy
- the age seizures started
- whether the seizures are easily controlled on medication or other treatment for epilepsy, including vagus nerve stimulation (VNS) and ketogenic diet therapy
- whether the child has other developmental and neurological problems as well as epilepsy (e.g., cerebral palsy, intellectual disability, autism spectrum disorder, weakness on one side of the body (hemiplegia))
Epilepsy syndrome
Some epilepsy syndromes have a better prognosis than others. For example, childhood absence epilepsy and self-limited epilepsy of childhood with centrotemporal spikes (SeLECTS) typically have an excellent prognosis: most children recover completely and many have few or no learning problems.
At the other end of the spectrum, certain syndromes, such as Lennox-Gastaut syndrome generally have a poor prognosis.
The prognosis for some specific epilepsy syndromes is discussed in more detail on the individual syndrome pages.
Cause of epilepsy
In general, children who have normal development and do not have a known cause for their epilepsy have a better prognosis than children with developmental delays or other underlying health issues and a known cause for their epilepsy.
Children with brain tumours, intellectual disabilities, head injury or progressive metabolic disease and children born with a brain abnormality (also called a congenital brain malformation) are less likely to become seizure-free with or without medication. Even so, about half of children with epilepsy due to a known cause who are seizure-free on medication will remain seizure-free when the medication is discontinued. Children who do well and remain seizure-free generally have other good prognostic factors, such as a normal electroencephalogram (EEG).
Age of onset
Epilepsy that begins in childhood often has a better prognosis than epilepsy that begins in adolescence or adulthood. However, children whose epilepsy starts very young (infancy) may not do as well. If a child’s epilepsy began before 12 years old, it is more likely that they will continue to be seizure-free once their medication is discontinued.
Response to treatment
If a child’s seizures are easily and quickly controlled on medication, this is a good sign that they will eventually become seizure-free without medication, particularly for children with epilepsy due to an unknown cause. Children with epilepsy due to a known cause or suspected cause and early response to treatment are slightly less likely to become seizure-free without medication.
If a child has surgery for epilepsy and then becomes seizure-free, this may also be a promising sign
Other neurological problems
Children with congenital brain malformations, brain tumours, intellectual disability or head injury are less likely to become seizure-free with or without medication. In one study, 42 per cent of children with neurological problems had a recurrence of seizures two years after discontinuing medication.
Number of seizures
The relationship between the number of seizures a child has and the child’s prognosis is unclear. Some studies have found a link between the number of tonic-clonic seizures before the seizures were brought under control and the chance of recurrence, while others have found no such relationship.
Seizure control
There are various possible outcomes for seizure control in people with epilepsy. Two thirds of children will generally respond to one or two anti-seizure medications, but one-third will not, despite a trial of two appropriate anti-seizure medications. The latter group of children are said to have drug-resistant epilepsy. In this group, therapeutic options include trial of anti-seizure medications which have not yet been tried, epilepsy surgery, ketogenic diet and neuromodulation (vagal nerve stimulation and deep brain stimulation).
In some cases, your child’s health-care team will suggest a trial period without medication if your child’s seizures have been well controlled for at least two years. It is a good idea to discontinue medication if there is a good chance that your child will be seizure-free without it, because the long-term use of epilepsy medications can affect your child’s self-image, behaviour and functioning. Decisions to taper and discontinue medications should be made by you and your neurologist together. Medication should be tapered off slowly under a health-care provider’s supervision; stopping suddenly can trigger seizures or even status epilepticus (prolonged seizure).
Other outcomes of epilepsy
Epilepsy can affect many other aspects of a child's life, including:
- emotions and behaviour
- social development
- ability to learn
- work
Health-care professionals and researchers are still learning about the factors that contribute to these outcomes in the long term. These problems may persist through adulthood. Seizure control alone is not the only issue. Even if a child does not have seizures, or if they are well controlled, there is some research which suggests that underlying abnormalities can cause problems with learning and behaviour. Medication side effects, other disorders, the age at which the seizures began and how the child is treated by others may all play a role as well.
Some syndromes are more likely than others to cause difficulties, such as syndromes with difficult to control seizures. These include infantile epileptic spasms syndrome and Lennox-Gastaut syndrome.
The underlying brain problem which led to the epilepsy is likely to cause associated problems in learning, behavior and emotional control. If these problems persist, despite seizure control and being off the anti-seizure medications, contact your neurologist so that they can assess your child, and refer them to the appropriate support services.