In the case of most forms of epilepsy, our inadequate knowledge of the aetiology does not allow us to define them as individual diseases. We therefore describe these entities as epilepsy syndromes, which have distinct clinical features and electro clinical patterns on EEGs (electro-encephalograms). The diagnosis of an epilepsy syndrome is helpful as it aids further investigation, the setting of treatment goals and the determination of a prognosis and possible co-morbidities. Correct diagnosis is crucially dependent on a complete history, which should include detailed information on the full sequence of events. Obtain the child’s description and avoid jargon. Home videos and seizure description sheets are useful supplements. This could help to avoid misdiagnosis, inappropriate investigations and the prescription of incorrect treatment. False prognostic information and unnecessary stigma are also avoided. Misdiagnosis is common and occurs in up to 30% of children and young adults. The EEG is not a diagnostic test as EEGs of 5% of normal children will indicate an ‘epileptiform abnormality’, while after their first epileptic seizures, the EEGs of 40% of children will show a normal result.

Neuroimaging should be obtained for some, but not all children and young people with epilepsy. Clear guidelines exist to indicate whether it is required.  Since medication is not immediately effective, counselling is important once treatment has been initiated. Due to the risks associated with abrupt discontinuation or withdrawal of medication, regular follow-up is essential. Always start with monotherapy and gradually increase the dosage. Most adverse effects are predictable and easily recognisable. Patients with intractable seizures who are being treated with at least two drugs at maximum dosages should be referred to a specialist. The discontinuation of medication can be considered once a patient has been seizure-free for at least two years.

Prognosis depends on the underlying lesion and not on the nature of the epilepsy. Learning and behavioural issues are very common in children and young people with epilepsy and should be addressed. About 33% of young people diagnosed with epilepsy have an associated intellectual disability. The extent to which cognition is affected is a composite of the underlying disorder, the duration of epileptic seizures and the extent of the brain injury, as well as the effect of the antiepileptic treatment. Engagement in regular sporting and social activities is advised, but unsupervised swimming and bathing should be discouraged.  Death caused by epilepsy is very rare and is most often not associated with the seizures, but rather with the underlying cause. If the families and colleagues of people with epilepsy are integrated into their support systems, they can lead normal and fruitful lives.   

By Dr Greg Lamb, Paediatric Neurologist at Faculty of Health Sciences