Twice a day, Isabelle Nodin, 51, replays the same routine in the kitchen of the family home in Igny (Essonne). Around 7:00 p.m., this midwife plunges a syringe into a small bottle of cannabidiol oil (CBD, the relaxing molecule without narcotic effect), 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 13-year-old sister Camille have Wwox syndrome, a rare genetic anomaly that associates “refractory epilepsy, profound global retardation and severe cognitive disorders”.
Polyhandicapped, they weigh only about thirty kilos. Their illness regularly causes epileptic seizures, sometimes up to twenty a day for the youngest, says her mother. She describes a laborious daily life, where each meal, each toilet, is a test.
“Seeing your child have an epileptic seizure is something terrible. Over time, you don’t get used to it, but you deal with it. This treatment has changed our life: if they are better, then we too”confides the mother, her daughter on her knees.
She says she has seen a marked decrease in seizures since her children have been taking CBD.
An experiment launched for two years
The two teenagers are among the first beneficiaries of the experimentation with cannabis for medical use launched for two years in March 2021 in France, under the control of the National Medicines Safety Agency (ANSM). Ultimately, it must include up to to 3,000 patients.
Of the 1,500 already enrolled, 70 are minors and mostly suffer from refractory epilepsies, explains Nathalie Richard, who directs the work of the ANSM. Dr. Stéphane Auvin, neuropediatrician at Robert Debré Hospital (AP-HP), has accompanied Camille and Thomas since they were very young.
Fifteen of his patients, aged 5 to 17 and suffering from pathologies resistant to existing treatments, are also being treated with CBD. For each, you have to “find the answer dose” and determine from what dosage the drug is effective, explains Dr. Auvin.
“Thomas had a good response right away, then we had to increase the dose. For Camille, we had no effect up to the maximum dose which she tolerates very well”he illustrates.
CBD causes far fewer side effects than other antiepileptic treatments, adds Isabelle Nodin: less fatigue, drowsiness and seizures, which allows her to develop a “non-verbal communication” with his children.
“They don’t speak, can’t read, so you have to catch their attention with sensory things”she abounds in the middle of musical books and colored optical fibers strewing the floor of her daughter’s room.
700,000 people with epilepsy in France
France would have nearly 700,000 people with epilepsy, of which around 30% would present resistance to existing treatments, estimates Stéphane Auvin.
The end of the experiment next year poses the challenge of the generalization of antiepileptic treatments based on CBD. Regarding refractory epilepsy, “we have positive feedback on the effectiveness of the treatments (…) but there are always undesirable effects, it is relative to any drug”recognizes Nathalie Richard after a meeting of the Temporary Scientific Committee (CST), responsible for monitoring the experiment.
“CBD should not be seen as a magic medicine”warns Stéphane Auvin, who doubts that the treatment can relieve all forms of epilepsy: one of his patients has already left the device, he points out.
“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 to measure side effects and efficacy?”asks the neuropediatrician.
The device must be the subject of a precise evaluation, underlines the ANSM, in particular on the repercussions of medical cannabis on other treatments. One certainty, the patients treated as part of the experiment will continue to be treated “with medical cannabis” once it has ended.