https://www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/north-thames-paediatric-epilepsy-network-information-health-professionals/information-health-professionals/

Information for health professionals

Managing complex epilepsy (non-pharmacological treatment options)

  • When to consider epilepsy surgery – referral criteria to the Children’s Epilepsy Surgery Service (CESS)
    • Children under the age of 24 months with suspected focal seizure onset with or without identifiable lesion on brain MRI including those with catastrophic onset epilepsy and developmental regression. (Children under 24 months with seizure restant to anti-epilptic medication should have a paediatric neurologist involved in their care.)
    • Children of all ages with seizures and unilateral lesions on MRI, i.e. cortical malformation, developmental tumour, acquired brain injury, hippocampal sclerosis.
    • Certain aetiologies and constellations require special consideration including Sturge Weber syndrome, unilateral structural brain lesions (i.e. cortical dysplasia or developmental tumours) associated with developmental regression +/- continued seizures, Rasmussen syndrome, hypothalamic hamartomata.
    • Children of any age with medication resistant seizures suggestive of focal onset and no identifiable lesion on MRI, that have failed treatment two or more Automated External Defibrillator (AEDs). 
    • Children of any age with Tuberous Sclerosis with seizures resistant to two AEDs should be evaluated to see if seizures arise from resectable tubers located in one hemisphere.
    • Children who have ‘drop attacks’ as part of a more complex epilepsy, with or without structural brain abnormalities, may also be suitable for a corpus callosotomy.

When to consider Vagus Nerve Stimulation (VNS)Treatment

  • For patients with drug resistant epilepsy where resective epilepsy surgery is not indicated (may require first evaluation in an epilepsy surgery program to establish this)
    • Patients with multifocal seizures.
    • Drug resistant generalised seizures in epilepsy with bilateral structural/ metabolic or genetic aetiology (including genetic generalised epilepsies).
  • VNS service in NTPEN area:
    • Great Ormond Street Hospital for Children NHS Trust 
    • Lead: Dr Sophia Varadkar (Consultant Paediatric Neurologist).

When to consider the ketogenic diet

  • For patients whose seizures fail to respond to antiepileptic medication (at least two antiepileptic medications in therapeutic doses).
  • For certain epilepsy syndromes early in their course:
    • Lennox-Gastaut syndrome.
    • Myoclonic-astatic epilepsy (Doose syndrome).
    • Dravet syndrome (severe myoclonic epilepsy in infancy).
    • Infantile spasms/West syndrome.
    • Symptomatic epilepsies if epilepsy surgery is not indicated, eg tuberous sclerosis, bilateral cortical malformations or diffuse bilateral brain injuries.
  • For children with the metabolic disorders:
    • GLUT 1 deficiency.
    • or PDH deficiency.
  • For patients who have intolerable and/or severe side effects from antiepileptic medication.
  • Further information:
  • Ketogenic diet service in NTPEN area:
    • Great Ormond Street Hospital for Children NHS Trust
    • Lead: Dr Christin Eltze (Consultant Paediatric Neurologist) 

Individual Epilepsy Health Care Plans

These health care plans are documents designed to provide information on a young person’s epilepsy diagnosis, medication, actions to follow in an emergency, lifestyle and school issues. These documents are used in different settings including home, nursery, schools and hospitals. The actions in the plan have been agreed between the patient, parents, epilepsy nurses specialist, local lead paediatric consultant and school /nursery professionals. There are two separate document templates: