There are clear evidence-based guidelines for the standard of care of children with epilepsy.
The NICE Guideline: The Epilepsies was first released in October 2004, with a further publication in January 2012 and updates in February 2016 and February 2020. This is a UK based guideline and therefore requires some interpretation for the NSW context.
- All children with a recent onset suspected seizure should be seen urgently (within 2 weeks) by a specialist. This is to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs.
- The seizure type(s) and epilepsy syndrome, aetiology and co-morbidity should be determined.
- All children with epilepsy should have a comprehensive care plan (see: Epilepsy Management Pack) that is agreed between the individuals, their family and/or carers as appropriate, and primary and secondary care providers.
- The AED (anti-epileptic drug) treatment plan should be individualised according to the seizure type, epilepsy syndrome, co-medication and co-morbidity, the individual’s lifestyle, and the preferences of the individual, their family and/or carers as appropriate.
- All children with epilepsy should have a regular structured review. In children, this review should be carried out at least yearly (but may be between 3 and 12 months by arrangement) by a specialist.
- At the review, individuals should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; referral to tertiary services, including surgery if appropriate.
- If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, individuals should be referred to tertiary services soon (within 4 weeks) for further assessment.
National Institute for Health and Clinical Excellence, 2012. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. Nice Clincial Guideline 137.