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There are many syndromes that are confined to childhood or have their active phase in childhood.1 Many pathologies that lead to surgical treatment arise in childhood.2 The prevalence of epilepsy among UK children under the age of 16 was estimated as one in 240.3 This means that approximately 51,500 of the 12 million, children aged 16 years and under are living with epilepsy in the UK.3,4
In contrast with adults in whom symptomatic epilepsy is predominant, 75% of epilepsy in children is unrelated to other conditions.5 Most children diagnosed with epilepsy will see a paediatrician and remain within hospital-based paediatric services until they reach adulthood.6 This is backed up by professional guidance.7 General paediatricians should be encouraged to take a special interest in epilepsy. 5
A 2008 survey revealed that only 18% of PCTs compiled data on the number of children with epilepsy in their catchment area. This suggests PCTs will be unable to plan adequate levels of service for children with epilepsy.5
Data suggest that the likelihood of achieving seizure freedom after a second AED has been tried remains extremely small.8 Therefore referral to a tertiary epilepsy centre should be considered.9 This will enable the diagnosis to be reviewed and for treatments such as epilepsy surgery, the ketogenic diet, and the modified Atkins diet to be considered (if suitable).10
Misdiagnosis is a problem for this population. In one study, 39% of children referred to a tertiary epilepsy centre were judged not to have epilepsy after assessment.9
Children are not being given access to epilepsy surgery appropriately. Researchers estimate that there will be 127/1,000,000 new cases of childhood-onset pharmacoresistant epilepsy and 7/1,000,000 from this age group will have surgical procedures, However, research demonstrates that around 405 children each year would be suitable for surgery.11
There are a number of issues specific to the management of epilepsy in children. These include the following:
- most children are managed by general and community paediatricians. However, some children will be managed by a paediatric neurologist7,12
- as epilepsy may have a significant impact on a child's ability to learn and participate fully in educational activities, it is vital that good links are forged with educational services13
- two-thirds of children with epilepsy have intellectual abilities within the normal range.7 However, specific patterns of cognitive strengths and weaknesses, including memory impairment, may be associated with epilepsy. Up to 50% of children with epilepsy require some additional support in school.1 Epilepsy Action produces a range of educational resources for the families and teachers of children with epilepsy available at www.epilepsy.org.uk
- children with epilepsy may be more psychologically vulnerable and more likely to develop psychiatric disorders.14 If current AED treatment is suspected to be adding to these problems, refer the child for a treatment review
- an estimated 15% of children with mild learning disabilities and 30% with severe learning disabilities have epilepsy7
- AED treatment for children is less well supported by clinical trial data than for adults, and drugs are more likely to be used outside their licensed indications8
- young girls and boys who are likely to need treatment into their reproductive years, and their families, should be informed of any risk their treatment poses to their fertility and contraception7
- For young girls and their families this discussion should include teratogenicity. This will enable the family to make an informed decision regarding which treatments are most appropriate.7
The physical, psychological and social needs of young people with epilepsy should always be considered by healthcare professionals. Attention should be paid to their relationships with family and friends and at school.15
The 2012 NICE guidelines pertaining to children and young people suggest:7
- the diagnosis of epilepsy should be made by a paediatric neurologist or a paediatrician with expertise in childhood epilepsy
- a review should take place at least annually, even for those with well-controlled epilepsy, to identify problems, ensure discussion on issues such as withdrawal of treatment and minimise the possibility of becoming lost to follow-up
- all children and their carers should be given information appropriate to their condition
- each child should have an individual management plan agreed with the family and primary care team.
Note on prolonged or repeated seizures (status epilepticus)
Administration of buccal midazolam is usually the first-line treatment in children and young adults. Rectal diazepam may be used if preferred or if buccal midazolam is unavailable.7 Intravenous lorazepam is recommended if intravenous access has been established.7 In the community, midazolam and diazepam should only be prescribed for children or young adults who have had a previous episode of prolonged or serial convulsive seizures.7 Both midazolam and diazepam should be used in accordance with a care plan and carers and family should receive training in how to administer it.
1 Aicardi, J, 2005. Epilepsy in Children. Second edition. New York: Raven
2 Cross JH, 2011. Epilepsy Surgery in children: are we doing enough? Epilepsy Professional. [online] (Accessed 13/04/2012).
3 Joint Epilepsy Council, 2005. Epilepsy prevalence, incidence and other statistics. [online] (Accessed 12/04/2012).
5 Shorvon S, Kitson A, 2000. Clinical standards advisory group. Services for patients with epilepsy: a report of a CSAG committee.London: Department of Health.
6 Epilepsy Action, 2009. Epilepsy in England: Time for Change. Leeds: Epilepsy Action.
7 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.
8 Scottish Intercollegiate Guidelines Network (SIGN), 2005. Diagnosis and Management of Epilepsies in Children and Young People. A National Clinical Guideline. Edinburgh: SIGN.
9 Alving J et al. 2006. The Misdiagnosis of Epilepsy in Children Admitted to a Tertiary Epilepsy Centre with Paroxysmal Events. Archives of Diseases in Childhood. 91: 219-221.
10 Brodie MJ, Kwan P, 2000. Epilepsy after the First Drug Fails: Substitution or Add-On? Seizure. 9: 464-468.
11 Martern G, Berg A, 2009. Frequency, Prognosis and Surgical Treatment of Structural Abnormalities Seen with Magnetic Resonance Imaging in Childhood Epilepsy. Brain. 132 (10): 2785-2797.
12 Hanna NJ et al. 2002. The National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy–death in the shadows. London: The Stationery Office.
13 de Boer HM et al. 2008. The Global Burden and Stigma of Epilepsy. Epilepsy Behaviour. 12: 540-6.
14 Medscape Education Clinical Brief, 2011. Psychiatric Problems Are Common in Children with Epilepsy. [online] (Accessed 13/04/2012).
15 Chadwick D et al. 1997. Managing the Teenager with Epilepsy: Paediatric to Adult Care. Seizure. 6: 27-30.