A diagnosis of epilepsy should be made by an expert but the GP’s role in the care of children with the condition is important too, as Dr Martin Kirkpatrick explains


Epilepsy is one of the most common neurological diseases encountered in paediatric practice, and many general practices are likely to have children with epilepsy on their lists. The population prevalence of childhood epilepsy is around 0.6%, and some 70% of epilepsy cases present in the first two decades of life.

The truism that children are not just small adults is particularly evident in relation to epilepsy – there are as many differences as there are similarities between the epilepsies of children and those of adults.

However, many children presenting with a seizure will not, in fact, have epilepsy. There is a wide range of differential diagnoses of ‘fits, faints and funny turns’. In general practice, common presenting problems include benign febrile seizures, seizures symptomatic of an underlying intracranial infection in a febrile child and vasovagal syncopal (non-epileptic) convulsive seizures that appear identical to an epileptic seizure. Misdiagnosis is a common problem. In children referred to secondary care with a diagnosis of ‘epilepsy’, up to 46% were found to have a different diagnosis.1

Misdiagnosis, and inappropriate prescribing of antiepileptic medication, can have significant adverse consequences including congenital abnormalities associated with maternal use of anti-epileptic drugs, or death, for example in a patient whose cardiogenic syncopal seizure is secondary to an underlying cardiac arrhythmia.

There are more than 40 epilepsy syndromes in childhood, and the field of molecular genetics is rapidly expanding. Having established a diagnosis of epilepsy, a more precise syndromic diagnosis should be made where possible. This is not simply an academic exercise – management and outcomes vary widely from syndrome to syndrome.

The need for a guideline

Numerous national audits and surveys have highlighted deficiencies in epilepsy care across all healthcare sectors, as well as shortcomings in education and social services for individuals with epilepsy. Children with epilepsy and their families should be entitled to properly structured epilepsy services delivering good management. They should also have access to information and advice appropriate to the child’s particular condition.

The recently published SIGN guideline on the management of the epilepsies in children and young people aims to address these issues.

The evidence base

It cannot be claimed that there is a firm and comprehensive evidence base for many of the recommendations contained in the guideline. Indeed, if only high-grade studies of robust randomised controlled trials had been included, the guideline would be so brief and disjointed as to be of very little value.

The guideline contains only a limited number of grade A recommendations and a far greater number of recommendations with lower evidence levels and ‘Good Practice Points’, or expert opinion (Figure 1, below).

Figure 1: Levels of evidence and grades of recomendation

In a review of the recently published NICE guideline on epilepsies in adults and children it was cogently argued that while high level evidence should be carefully assessed and used to influence practice, there was also a role for "expert opinion”.2 In the field of evidence-based medicine "... without clinical expertise, practice risks becoming tyrannised by evidence”.3

The guideline development group has tried to achieve a balance between appropriate evidence and clinical expertise so as to produce a document that is of practical use to clinicians.

Who is the guideline aimed at?

The guideline cannot aspire to meet all needs across the wide range of healthcare professionals involved in epilepsy care and of parents. It is thus principally aimed at secondary care paediatricians. However, some sections are directly relevant to primary care and others contain useful information to aid GPs in advising children and their families.

Diagnosis and investigation

The guideline contains recommendations on the approach to managing a child with a first seizure in an emergency setting, whether in primary care or a hospital accident and emergency department. The possibility that it is an acute symptomatic seizure should be carefully considered.

Epilepsy should no longer be perceived as merely a ‘general paediatrics’ problem, and the guideline development group recommends that the final diagnosis of epilepsy should be made by a "paediatrician with expertise in childhood epilepsy or a paediatric neurologist”. The challenge then is to define what is meant by "expertise”, and the Royal College of Paediatrics and Child Health is addressing this question at present.

Accurately diagnosing epilepsy can be very difficult, as can obtaining a clear and detailed history of the event(s). However, home video recordings of recurrent events can be enormously useful in supplementing the history; indeed, this may be the single most useful ‘investigation’ in making an accurate diagnosis.

Children with convulsive seizures (which may or may not be epileptic) should have a 12-lead electrocardiograph (ECG) recording to exclude rare, potentially fatal but treatable underlying cardiac conduction abnormalities.

An electroencephalogram (EEG) should be requested only after the child has undergone a careful clinical evaluation by a clinician with expertise in epilepsy, and particular care is required in its interpretation.4

Magnetic resonance imaging is the brain imaging modality of choice and is required for most children with epilepsy.

Box 1 (below) gives the key recommendations relating to diagnosis and investigation.

Box 1: Key reomendations on diagnosis and investigation, with grades
  • The diagnosis of epilepsy should be made by a paediatric neurologist or paediatrician with expertise in childhood epilepsy (D)
  • Home video camera recordings should be used in order to capture recurrent events where the diagnosis is in doubt (GPP)
  • All children presenting with convulsive seizures should have an ECG with a calculation of the QTc interval (GPP)
  • All children with recurrent epileptic seizures should have an EEG. An early recording may avoid the need for repeated EEG investigations (C)
  • For children with recurrent epileptic seizures and a normal standard EEG, a second EEG recording including sleep should be used to aid identification of a specific epilepsy syndrome (D)
  • Where the clinical diagnosis of epilepsy is uncertain and if events are sufficiently frequent, an ictal EEG should be used to make a diagnosis of an epileptic or non-epileptic seizure (D)


Figure 2 (below) shows the reverse of the quick reference guide which contains recommendations on management.

Figure 2: Reverse of the quick reference guide

Providing information

The guideline emphasises the importance of providing clear, accurate and appropriate information for patients and their families.This should be tailored to the child’s particular epilepsy syndrome and cover implications for everyday living as well as treatment. The guideline recommends using a checklist to help deliver information.

Schooling can be a problematic area for children with epilepsy. There is a high prevalence of learning and behavioural problems among these children, and it is important to recognise the issues and assess and manage them appropriately. Good communication between primary and secondary care and with other agencies is of prime importance in this area.

Models of care

Dedicated multidisciplinary clinics for chronic childhood diseases such as cystic fibrosis and diabetes have been established as good practice for many years.5 Epilepsy services have lagged some way behind, but a number of similar clinics are beginning to emerge across the UK; these include ‘first seizure clinics’ and ‘teenage clinics,’ as well as ‘transition clinics,’ which are concerned with the transfer from paediatric to adult care.

While the evidence base for the effectiveness of epilepsy nurse specialists is lacking, it is most clinicians’ experience that this role significantly improves the quality of care offered to children and their families.

Anti-epileptic drug treatment

When to start anti-epileptic drug (AED) treatment and which drug to choose are important decisions, which will potentially commit a small proportion of children to life-long treatment.

Drug therapy should be tailored to the individual child and take into account a number of factors, including the risk of recurrence of further seizures, the potential adverse effects of AEDs, the likelihood of remission, and the child and family’s preferences.

Except in the case of phenytoin, there is little evidence to support routine monitoring of AED level,6 or for routine biochemical testing, such as liver function tests.

Box 2 (below) gives the key recommendations relating to anti-epileptic therapy.

Box 2: Key recommendations on anti-epileptic therapy, with grades
  • Children with febrile seizures, even if recurrent, should not be treated prophylactically with anti-epileptic drugs (B)
  • Anti-epileptic drug treatment should not be commenced routinely after a first, unprovoked tonic-clonic seizure (A)
  • Routine AED level monitoring is not indicated in children (B)
  • Withdrawal of AED treatment should be considered in children who have been seizure free for two or more years (A)
  • Referral to tertiary specialist care should be considered if a child fails to respond to two AEDs appropriate to the epilepsy in adequate dosages over a period of six months (GPP)

Many medications used in paediatric practice are ‘unlicensed’. That is not to say that for many medications, and specifically antiepileptic medication, there is not a good evidence base for their efficacy and favourable side-effect profile.

The Royal College of Paediatrics and Child Health and the Neonatal and Paediatric Pharmacists Group have jointly published a paediatric formulary, which includes a statement on prescribing unlicensed medications in children. This states that the use of unlicensed medicines or licensed medicines for unlicensed applications is necessary in paediatric practice.7

Key recommendations on management are given in Box 3 (below).

Box 3: Key recommendations on management, with grades
  • All children with epilepsy and their carers should be given information appropriate to their condition. A summary of the content of these discussions should be recorded (D)
  • Families should be given information to take home in the most suitable format making adjustments for different sociocultural contexts, e.g. leaflets, fact sheets, videos (D)
  • A checklist should be used to help healthcare professionals deliver appropriate information to children, families and carers (GPP)
  • Children with epilepsy should have access to specialist epilepsy services, including dedicated young people and transition clinics (GPP)
  • Each child should have an individual management plan agreed with the family and primary care team (GPP)
  • All children with epilepsy should have their behavioural and academic progress reviewed on a regular basis by the epilepsy team. Children with academic or behavioural difficulties should have appropriate educational and/or psychological assessment and intervention (GPP)
  • Each epilepsy team should include paediatric epilepsy nurse specialists (D)


Primary care services have an important role in the care of children with seizures, whether epileptic or nonepileptic. This includes providing appropriate information to children and their families about the differential diagnoses and about how to respond in the event of a seizure.

It is very encouraging that epilepsy in adults has been included as an indicator in the nGMS contract. It is to be hoped that it will be extended to include children.

If a diagnosis of epilepsy is confirmed, ongoing care needs to take place through a partnership involving the family and primary and secondary care.

Children’s epilepsy nurse specialists can play an important role in bridging primary and secondary care services; good communication is crucial in the management of a child’s epilepsy.

There is likely to be a need for more paediatric neurologists and paediatricians with expertise in epilepsy; at present there are fewer than 100 paediatric neurologists in the UK.

SIGN 81. Diagnosis and management of epilepsies in children and young people can be downloaded from the SIGN website: www.sign.ac.uk.


  1. Stephens JBP. Fits and faints. Clinics in Developmental Medicine No. 109. London: Mac Keith Press, 1990.
  2. Ferrie GD, Livingston JH. Epilepsy and evidencebased medicine: a vote of confidence in expert opinion from the National Institute for Clinical Excellence? Dev Med Child Neurol 2005; 47: 204-6.
  3. Sackett DL, Rosenberg WMC, Gray JA et al. Evidence-based medicine: what it is and what it isn’t. Br Med J 1996; 312: 71-2.
  4. Fowle AJ, Binnie CD. Uses and abuses of the EEG in epilepsy. Epilepsia 2000; 41(Suppl 3): S10-8.
  5. Bloomfield S, Farquhar JW. Is a specialist paediatric diabetic clinic better? Arch Dis Child 1990; 65(1): 139-40.
  6. Jannuzzi G, Cian P, Fattore C et al. A multicenter randomized controlled trial on the clinical impact of therapeutic drug monitoring in patients with newly diagnosed epilepsy. Epilepsia 2000; 41(2): 222-30.
  7. Royal College of Paediatrics and Child Health. Neonatal and Paediatric Pharmacists Group. Medicines for Children, 2nd ed. London: Royal College of Paediatrics and Child Health, 2003.

Guidelines in Practice, June 2005, Volume 8(6)
© 2005 MGP Ltd
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