Lake Villa boy with Dravet syndrome doing better than ever after using marijuana extract

Medical marijuana could prove to be a significant breakthrough for children who suffer from frequent unpredictable epileptic seizures.

FOX 32’s Larry Yellen reports on a family from north suburban Lake Villa whose child was involved in a groundbreaking new study.

For 9-year-old Gavin Macias, the first symptoms of his rare disease showed up in the middle of the night when he was two months old.

“We heard a noise, kind of a sound coming from Gavin, so by the time we got there it was his body, just contorting, it didn't last very long,” said mother Jessica Macias.

Gavin had suffered a seizure, which is not that unusual for an infant. But another seizure two months later suggested something more serious. Blood tests revealed he had Dravet syndrome. Children with Dravet Syndrome suffer frequent and unpredictable seizures. They are overly sensitive to light and their cognitive development is delayed. 

Dr. Linda Laux treats children with Dravet Syndrome. 

“It impacts their whole entire lives. Anything that can help that child in terms of their seizure control, behavior, motor, anything, is very helpful overall for the families,” said Dr. Laux.

Dr. Laux, however, is now optimistic that a marijuana extract called Canibidiol offers new hope for families like Gavin's.

Fourteen children at Lurie Children's Hospital were recently among 120 nationwide who participated in a recent study of Canibidiol.

“The findings were, that children who received the canibidiol medication, had a reduction of their seizures, the major convulsive type seizures, by 39 percent,” said Dr. Linda.

That's compared with a 13 percent reduction among those who received a placebo. Gavin took part in the study during a family vacation to Hawaii. His dramatic improvement convinced his parents he had received Canibidiol, not the placebo.

Jessica Macias/parent: “We were there for two weeks, he had one rough day, after that he had nothing. There was no seizure, no jerks, and we were like oh my gosh! We think that he's on it,” Macias said.

More testing is still needed before FDA approval. But until then, families can obtain the extract only in states with medical marijuana programs, which include epilepsy as a qualifying disease. Illinois is one of them.