World first epilepsy device fitted in UK boy’s skull

Oran, from Somerset, has Lennox-Gastaut syndrome, external, a treatment-resistant form of epilepsy which he developed at the age of three.

Since then he has suffered several daily seizures ranging from two dozen to hundreds.

When we first spoke to Oran’s mum last autumn, prior to surgery, she explained how Oran’s epilepsy dominated his life: “It has robbed him of all of his childhood.”

She told us Oran had a range of different seizures, including those where he fell to the ground, shook violently, and lost consciousness.

She said at times he would stop breathing and require emergency medication to resuscitate him.

Oran has autism and ADHD, but Justine says his epilepsy is by far the biggest hurdle: “I had a fairly bright three-year-old, and within a few months of his seizures commencing he deteriorated rapidly, and lost a lot of skills.”

Oran is part of the CADET project, external – a series of trials assessing the safety and effectiveness of deep brain stimulation for severe epilepsy.

The partnership involves Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford.

The Picostim neurotransmitter is made by UK company Amber Therapeutics.