Oran, a teenager who battled severe epilepsy for eight years, has experienced an 80% reduction in daytime seizures after participating in the UK’s first clinical trial of deep brain stimulation (DBS) for childhood epilepsy.
It is through Oran’s story that it can be seen that some children were treated for incurable and uncontrollable fits. His fits were life-threatening before this trial since they needed constant supervision and had a high risk of Sudden Unexpected Death in Epilepsy (SUDEP). Medication offered little relief.
Implanting Hope
In October 2023, at the age of 12, Oran underwent surgery at Great Ormond Street Hospital (GOSH) to implant a revolutionary DBS device. This specific device fixes onto his head unlike the other typical DBS systems thereby eliminating the risks that come with his growth. Moreover, it is chargeable via wearable headphones and thus there is no need for changing batteries often.
Paving the Way for Others
Funded by various organizations and sponsored by University College London (UCL), this trial aims to make DBS a standard treatment method for children with uncontrolled epilepsy. Because of Oran’s case, three more participants have been added during the pilot phase while others are still being sought for future larger scale trials.
A Brighter Future
Justine, Oran’s mother talks about how much their lives have been changed because of the DBS device. “There has been great improvement,” she says.” The seizures have gone down and are less serious than before but what has been priceless is his quality of life improvement; he now talks more.”5 He is also engaged most times… All these give hope which previously I could never have dreamt of six months ago.”
The Science Behind the Success
The DBS device is designed to target the thalamus, a part of the brain which plays a critical role in relaying electrical signals. The device works by stimulating that area thus interrupting pathways that lead to seizure explosions. This could be personalized in the future with individual seizure patterns.
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A Collaborative Effort
The CADET trial is a collaborative effort between GOSH, UCL, King’s College London, the University of Oxford, and Amber Therapeutics a UK based medical technology company. They have combined their forces to provide new hope for children whose lives are being ruined by epilepsy.