Experiments with medical marijuana: CBD for the treatment of children with epilepsy

In tense hands, 15-year-old Thomas Naudin holds a rubber ball. Suffering from a rare form of epilepsy, he is experimenting with medical marijuana and is now benefiting from treatments that are “life-changing” for some patients and their families.

Twice a day, 51-year-old Isabelle Naudin repeats the same thing in the kitchen of the family home in Igny (Essonne).

Around 7:00 pm, this midwife dips a syringe into a small bottle of cannabidiol oil (CBD, a non-narcotic relaxing molecule) to adjust the dosage of the drug. She then scoops up the viscous liquid with a large spoon and gives it to her children.

Thomas and his sister Camille, 13, suffer from Wuoks syndrome, a rare genetic anomaly that combines “refractory epilepsy, profound general retardation and severe cognitive impairment.”

“Seeing your child have an epileptic seizure is something terrible. Over time, you don’t get used to it, but you manage. This treatment has changed our lives: if they feel better, then so do we, ”admits the mother. , her daughter on her knees.

She says she has noticed a marked reduction in seizures since her children took CBD.

– “Response dose” –

These two teenagers are among the first beneficiaries of cannabis experiments for medical use, started over a two-year period in March 2021 in France under the supervision of the National Agency for the Safety of Medicines (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, according to Natalie Richard, who runs the ANSM.

Dr. Stéphane Ovin, neuropediatrician at the Robert Debre Hospital (AP-HP), accompanied Camille and Thomas from early childhood.

Fifteen of his patients, aged 5 to 17, who suffer from pathologies that are resistant to existing therapies, are also being treated with CBD.

For each, you need to “find the answer dose” and determine at what dosage the drug is effective, explains Dr. Aries. “Thomas had a good response right away, then we had to increase the dose. For Camilla, 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 drugs, adds Isabelle Naudin: less fatigue, drowsiness and seizures, allowing her to develop “non-verbal communication” with her children.

“They can’t talk, they can’t read, so you need to get their attention with sensory things,” she says among music books and colorful fiber optic cables strewn across the floor of her daughter’s room.

– “Positive feedback –

Stéphane Owen estimates that there will be around 700,000 people with epilepsy in France, of which about 30% will be resistant to existing treatments.

The end of the experiment next year sets the goal of generalizing CBD-based antiepileptic therapies.

With regard to refractory epilepsy, “we have positive feedback on the effectiveness of the treatment (…), but there are always undesirable effects, this is with any drug,” admits Natalie Richard at the end of the meeting of the Interim Scientific Committee (CST), responsible for monitoring the experiment .

“CBD should not be viewed as a magic drug,” warns Stefan Oven, who doubts the treatment can alleviate all forms of epilepsy: he points out that one of his patients has already left the device.

“CBD as a molecule in the treatment of epilepsy clearly has its place,” but “does the ANSM experiment have the same legitimacy as a clinical trial to measure side effects and efficacy?” asks the neuropediatrist.

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

One thing is certain: the patients who were treated as part of the experiment will continue to be treated with “medical marijuana” after the experiment ends.

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