Background

Epilepsy surgery in infancy and early childhood is increasingly recommended because it may prevent many years of unnecessary seizures. Surgery can help prevent or reduce the impaired development and behaviour that is sometimes caused by early onset seizures. Children and adolescents with drug-resistant epilepsy who had undergone epilepsy surgery have a significantly higher rate of freedom from seizures and better scores with respect to behaviour and quality of life, compared to those who continued medical therapy alone at 12 months. The below is an example of a patient journey into the Children’s Epilepsy Surgery Service.

Initial presentation

Alfie presented to the local A&E department after having a suspected seizure at his mainstream primary school. In class he stared sideways and upwards, was unresponsive, then fell off his chair and then had jerking of one side of his body more than the other. This lasted for two minutes following which he felt sleepy. An ambulance took him to hospital and after arrival he was talking and moving normally. At hospital, his parents reported that three weeks previously they had found Alfie on the floor breathing heavily and sleepy, and his parents assumed he had fallen over.

Alfie was assessed by the on-call paediatric consultant, who diagnosed epilepsy, arranged an electroencephalogram (EEG) and cranial MRI scan and commenced Alfie on antiseizure medication (ASM). An appointment for the children’s epilepsy clinic was arranged and his parents were given the contact details for the epilepsy specialist nurse (ESN). His baseline EEG showed some mild focal abnormalities on the right at the front and the 1.5T cranial MRI was normal but with considerable movement artefact.

Follow-up and management

Alfie was followed in clinic by his paediatrician and ESN and despite maximal tolerated doses of two appropriately chosen ASMs prescribed by his GP, the left-sided focal onset seizures continued. He was seen in the joint tertiary paediatric neurology out-reach clinic where further ASMs were tried in a shared care model with his paediatrician and ESN. Following review at the tertiary neurosciences neuroradiology MDT the cranial MRI was deemed to be sub-optimal due to movement and a detailed 3T MRI scan was arranged under general anaesthetic at the tertiary centre.

The repeat MRI scan revealed focal cortical dysplasia in the right frontotemporal region and a referral was made by the consultant paediatric neurologist to a national Children’s Epilepsy Surgery Service (CESS) with the accompanying history, clinical findings, new MRI images and EEG reports.

Referral to the Children’s Epilepsy Surgery Service

Following an initial appointment with the CESS centre, Alfie was admitted to the centre for a detailed assessment including video EEG telemetry, isotope scanning, neuropsychology and neuropsychiatry. After discussion at the CESS multi-disciplinary team, Alfie was offered surgery to remove the cortical dysplasia with a full discussion of all the potential risks and benefits.

The family agreed to surgery following which Alfie was seizure free. Alfie was followed up jointly in a shared care model between tertiary paediatric neurology and his local paediatrician and ESN. At 6 months follow-up a drug weaning programme was underway and Alfie and his family are very happy with the outcome.