Two San Sebastian Children Participate in a Clinical Trial to Study the Potential Treatment of Dravet Syndrome with Marijuana

Dravet Syndrome is a disease similar to epilepsy suffered by just one out of every 20,000 - 40,000 people. The seizures that patients suffer, like those of many refractory epilepsies, can apparently be reduced by marijuana extracts rich in cannabidiol, but studies are still being conducted to definitely demonstrate this.

One of these two clinical trials will feature participation by 150 children, among them 4 are from Spain, two from San Sebastián, and two from Biscay,. Ander is one of them. Age ten, he suffers five or six seizures per month, and has already had 400 in his lifetime, his first when he was just months old. His parents have tried different antiepileptic drugs, but no medication has prevented the child's spasms; thus far they have only obtained a reduction in the frequency and intensity of the events.

The child from San Sebastián needs constant help and even professional attention at school, where he is in second grade. His seizures are unpredictable, so there must always be someone nearby who is aware of his condition. He sleeps with his parents, or under the watch of a surveillance camera that alerts them if something happens. They need to respond to each seizure in just three minutes to prevent Ander from suffering multi-organ failure or cardiorespiratory arrest.

If he does not take his medication he suffers seizures that last half an hour and cannot be stopped. Some time ago he suffered a 50-minute seizure, and his parents feared that oxygen would not reach his brain, leading to cerebral paralysis. Thus, this clinical trial with cannabidiol is a source of hope for the family; the extract of the marijuana plant could control the information that his neurons send, correcting the communicative dysfunction between them.

The Dravet Syndrome Foundation believes that trials like this could yield better clinical control in a short period of time. “There is no doubt that it represents a source of hope,” says Félix Lucas, Ander's father, encouraged by the prospect of the researchers finding a treatment for their son.

The family is already sending the results of the different analyses, and hope to know soon whether the treatment with marijuana could be a solution for Ander.