CBD to treat epileptic children

Published on :

Paris (AFP) – Thomas Nodin, 15, holds a rubber ball in his stiff hands. Suffering from a rare form of epilepsy, he takes part in experiments with medicinal cannabis and is now benefiting from a treatment that is “life changing” for certain patients and their loved ones.

Twice a day, Isabelle Nodin, 51, repeats the same routine in the kitchen of the family home in Igny (Essonne).

Around 7:00 p.m., this midwife dips a syringe into a small bottle of cannabidiol oil (CBD, the relaxing molecule with no narcotic effects) to adjust the dosage of the drug. She then scoops the viscous liquid into a large spoon and administers it orally to her two children.

Thomas and his sister Camille, 13, have Wwox syndrome, a rare genetic abnormality that combines “refractory epilepsy, severe global retardation and severe cognitive impairment.”

“Seeing your child have an epileptic seizure is a terrible thing. You don’t get used to it over time, but you deal with it. This treatment has changed our lives: if they are better, then so are we,” admits the mother, her daughter on her knees.

She says she has seen a significant decrease in seizures since her children started taking CBD.

“Response Dose”

The two teenagers are among the first beneficiaries of the medical cannabis experiment launched in France in March 2021 for two years under the control of the National Medicines Safety Agency (ANSM). Ultimately, it should include up to 3,000 patients.

Of the 1,500 already enrolled, 70 are minors and mostly suffer from refractory epilepsy, explains Nathalie Richard, who directs the work of the ANSM.

dr Stéphane Auvin, Neuropediatrician at the Robert Debré Hospital (AP-HP), has been with Camille and Thomas since childhood.

Fifteen of his patients, aged 5 to 17, suffering from pathologies resistant to existing treatments, are also treated with CBD.

For each one, you have to “find the response dose” and determine at what dose the drug is effective, explains Dr. Auvin. “Thomas responded well straight away, then we had to increase the dose. With Camille, we had no effect up to the maximum dose, which she tolerates very well,” he explains.

CBD causes far fewer side effects than other antiepileptic treatments, Isabelle Nodin adds: less fatigue, drowsiness and seizures, which allows her to develop “non-verbal communication” with her children.

“They don’t talk, they can’t read, so you have to get their attention with sensory things,” she says amidst music books and brightly colored fiber optics strewn on the floor of her daughter’s room.

“Positive feedback

France would have almost 700,000 people with epilepsy, around 30% of whom would show resistance to existing treatments, estimates Stéphane Auvin.

The deadline for the experiment next year presents the challenge of generalizing antiepileptic treatments based on CBD.

Regarding refractory epilepsy, “we have positive feedback on the effectiveness of the treatments (…) but there are always side effects, it’s relative to any drug,” acknowledges Nathalie Richard at the end of a meeting of the Temporary Scientific Committee (CST) , responsible for supervising the experiment.

“CBD should not be seen as a miracle drug,” warns Stéphane Auvin, who doubts that the treatment can alleviate all forms of epilepsy: one of his patients has already left the device, he insists.

“CBD as a molecule in the treatment of epilepsy clearly has its place,” but “does an experiment conducted by the ANSM give the same legitimacy as a clinical trial measuring side effects and efficacy?” asks the neuropediatrician.

The device must be the subject of an accurate evaluation, the ANSM stresses, particularly in relation to the effects of medical cannabis on other treatments.

One certainty is that the patients treated as part of the experiment will continue to be treated “with medicinal cannabis” after it is over.

Leave a Comment