A 13-year-old British teenager, Oran Knowlson, suffering from Lennox-Gastaut syndrome (LGS), a severe and treatment-resistant form of epilepsy, received a deep brain stimulation implant in October 2023. Since then, his quality of life has significantly improved.
LGS is a rare childhood epilepsy that appears between the ages of 2 and 6, characterized by multiple seizures, absences, and cognitive impairment. Oran, from Somerset, had been experiencing several dozen seizures daily since he was three years old. These seizures could lead to falls, loss of consciousness, and even respiratory arrests requiring emergency intervention. His mother, Justine Knowlson, explained that the illness had stolen his childhood, preventing him from leading a normal life.
In October 2023, Oran was included in the CADET project (Children's Adaptive Deep brain stimulation for Epilepsy Trial), led by University College London. He is the first of four children participating in this clinical trial aimed at evaluating the efficacy and safety of deep brain stimulation to treat LGS. Oran received an innovative device called Picostim, manufactured by Amber Therapeutics.
The Picostim, implanted in Oran's skull, is connected to two electrodes placed in the thalamus, a key region for brain electrical signals. The device emits a constant electrical pulse to block or disrupt the abnormal discharges responsible for the seizures. This complex surgical intervention, carried out at Great Ormond Street Hospital in London, lasted approximately eight hours.
Since the activation of the neurostimulator, Oran's daytime seizures have decreased by nearly 80%, and his nighttime seizures have become less frequent and less severe. Justine Knowlson reported that her son is now more alert, more communicative, and can participate in activities he enjoyed before, such as horse riding lessons.
The CADET project is supported by a collaboration of several institutions, including the University of Oxford, the UCL Institute of Child Health, and King's College London. Martin Tisdall, a pediatric neurosurgeon, highlighted that positioning the neurostimulator in the skull rather than the chest reduces the risks of infection and wire failures common with previous devices.
Three more children with LGS will soon be equipped with the Picostim as part of this clinical trial. If results continue to be positive, this device could become a standard treatment for children with treatment-resistant epilepsy.
Dr. Tisdall expressed his satisfaction in seeing Oran regain an almost normal life. He hopes this advance will open new prospects for pediatric patients suffering from severe epilepsy, offering a chance to significantly reduce seizures and improve their quality of life.