The teenager with epilepsyBMJ 1998; 317 doi: https://doi.org/10.1136/bmj.317.7164.960 (Published 10 October 1998) Cite this as: BMJ 1998;317:960
Has special needs
- Philip E M Smith, Consultant neurologist
Even for healthy teenagers, coping with emerging adulthood is a major challenge. A chronic disability such as epilepsy simply magnifies the problems of adolescence, and the penalties for seizures at this time are far more severe than in childhood. Epilepsy and its treatment have a direct bearing on major aspects of lifestyle such as education and employment prospects, driving ability, the use of alcohol and recreational drugs, relationships, contraception, pregnancy, and parenthood. Self consciousness is paramount and deviations from peer group norms assume great importance: epilepsy can be disastrous for an adolescent's self esteem and sense of identity.
Adolescents with epilepsy are often caught between paediatric and adult medical disciplines, with neither service specifically addressing their needs. The Liverpool group advocates multidisciplinary consultations with a neurologist, paediatric neurologist, and specialist epilepsy nurse.1 Whatever the setting, the consultation must focus on the needs and independence of the teenager, with the parents taking a back seat. If possible, part of the consultation should be with the teenager alone: an opportunity arises while examining the patient in a separate cubicle.
The same principles of clinical management apply in adolescence as in any age group, but for the teenager the problems are more pressing and the long term consequences of mismanagement more serious.2 A correct diagnosis of blackouts is essential. The diagnostic process in teenage epilepsy must take account of three situations. Firstly, some epilepsies, such as juvenile myoclonic epilepsy, present in adolescence and carry specific implications for management.3 Secondly, some childhood onset epilepsies, such as benign childhood epilepsy with centrotemporal spikes, consistently remit in adolescence.4 Thirdly, common conditions such as vasovagal syncope, psychogenic non-epileptic attack disorder, and migraine often present first in teenagers and may mimic epilepsy.
Optimal seizure control is central to managing epilepsy. When anti-epileptic drugs are indicated the ideal is to prescribe the lowest effective dose of a preparation with as few side effects as possible, given as a once or twice daily dose. A vigorous approach to seizure control is justified since interventions often have progressively less impact as epilepsy and its consequences become established. Surgery for epilepsy is much underused but potentially curative in some patients with localisation related epilepsies. The argument for surgery in children and adolescents is not just that it is effective5; it can also prevent the social, educational, and developmental handicaps which, once established, may persist even with good control of seizures.
Compliance with drug treatment is a particular problem in adolescence. As at any age, the reasons include denial of epilepsy, concern over side effects, and complacency about good seizure control. For teenagers there is also an intense peer pressure to conform—their tablets a reminder with each dose that they are different—as well as rebellion against parental involvement in the management of their epilepsy. Side effects are extremely important at this age since even mild cognitive dysfunction may permanently harm education and employment prospects. Cosmetic effects limit the usefulness of certain antiepileptic drugs (such as phenytoin) in young people.
Several lifestyle issues merit discussion. Young women taking enzyme inducing antiepileptic drugs must be warned about potential failure of oral contraceptives. More importantly, all women of childbearing age taking antiepileptic drugs need to know of their possible teratogenicity. There is some evidence that folate reduces this risk for enzyme inducing medications6 and valproate.7 Given that at least 30% of teenage pregnancies are unplanned, a pharmacological dose of folate 5 mg daily seems a sensible addition to any antiepileptic regimen.
Advice on regular sleep is particularly important in idiopathic generalised epilepsy, the commonest form in teenagers. Complete abstinence from alcohol is unnecessary, but teenagers must recognise its potential for interacting with drugs and impairing sleep quality and so provoking seizures. The influence of recreactional drugs on epilepsy is unknown. The risk of exposure to computer screens and flashing lights often concerns patients and parents. photosensitive epilepsies may present in the teenage years, but such exposure is harmless to most teenagers; a baseline electroencephalogram is helpful in refining this advice. A discussion of sudden unexpected death in epilepsy is sometimes appropriate and is touched on in a helpful patient information booklet.8
Epilepsy affects educational and employment prospects, with career choices being inevitably restricted by the diagnosis.9 Further restrictions imposed by parents, suggested by peers, or initiated by the patient are sometimes inappropriate. Such restrictions can threaten independence, deny opportunities for friendship, and encourage social isolation. A common sense approach is needed towards leisure and sports activities, both patient and parents often having to accept living with a degree of risk. The problems faced by teenagers with epilepsy apply, often to a lesser extent, across the range of patients with epilepsy. As we improve our services for this vulnerable group, the lessons learnt can only benefit people with epilepsy as a whole.