A 13-year-old boy from the UK, Oran Knowlson, became the first person globally to undergo a trial for a groundbreaking epilepsy treatment. The treatment involved implanting a neurostimulator directly into his skull, which has successfully reduced his daytime seizures by 80%.
Oran, who has Lennox-Gastaut syndrome, a severe and resistant form of epilepsy, underwent surgery at Great Ormond Street Hospital. His mother, Justine, shared that the surgery has greatly improved his quality of life, allowing him to enjoy activities he once couldn’t, like riding lessons.
Oran’s condition has been challenging since the age of three, with daily seizures disrupting his life. His mother revealed that his epilepsy severely impacted his childhood, causing a rapid decline in his skills and overall well-being. Additionally, Oran is autistic and has ADHD, but his epilepsy has always been the most difficult aspect to manage.
Before the surgery, Oran’s mother expressed her hopes for her son to regain some normalcy in his life.
The device, called Picostim, created by UK-based Amber Therapeutics, works by emitting electrical pulses to interrupt abnormal brain signals that trigger seizures. The surgery, which lasted eight hours, involved inserting electrodes deep into Oran’s brain, targeting the thalamus, a key relay station for neuronal information. The electrodes were connected to the neurostimulator, a small device fitted into a gap in Oran’s skull, with extreme precision during placement.
Deep brain stimulation is not new, but the unique aspect of Oran’s procedure was that the device was implanted in the skull rather than the chest, reducing the risk of complications. The wireless technology also allows Oran to recharge the device daily using wireless headphones, all while engaging in everyday activities like watching TV.
Oran’s recovery has been remarkable, with significant improvements in his epilepsy symptoms. His mother, Justine, noted that he is more alert, and his night-time seizures have become shorter and less severe. The ongoing trial, which involves other children with Lennox-Gastaut syndrome, aims to assess the effectiveness of deep brain stimulation as a treatment for severe epilepsy.
Looking ahead, the team at Great Ormond Street Hospital plans to advance the device’s capabilities, enabling it to respond to changes in Oran’s brain activity in real time, potentially preventing seizures before they occur. Justine expressed excitement for this next phase, acknowledging that while the treatment is not a cure, it has brought hope and improved Oran’s outlook on life.
The Picostim neurostimulator has also been used to treat other conditions like Parkinson’s disease, and a similar skull-mounted device is being utilised in the United States for epilepsy treatment.