Trial of marijuana-based drug offers hope to kids with epilepsy – Houston Chronicle

Izaiah Ruiz, patient at Texas Children's Hospital will undergo a clinical trial of a drug containing a synthetic component of marijuana for children with catastrophic form of epilepsy known as Dravet syndrome. The worldwide trial will enroll 30 patients who will receive the drug, a first-of-its kind form of pure cannabidiol made by a British company.

By Todd Ackerman

October 30, 2014 | Updated: October 30, 2014 3:56pm

Izaiah Ruiz’s epilepsy was so severe, his daily life so miserable, that his grandmother says she would have sold her Montgomery County home and moved to Colorado for what many say is a new, miracle treatment: marijuana.

But Lori Fountain couldn’t make the finances work. As her 6-year-old grandson suffered, all she could do was follow online the progress of patients who sought treatment in Colorado, where marijuana is legal. Their families reported patients suddenly were seizure-free, verbal, able to dress and feed themselves thanks to treatment with a strain of marijuana, a preparation known as Charlotte’s Web, which has become something of a national phenomenon.

Seemingly without hope, Fountain a few weeks ago got unbelievable news from Texas Children’s Hospital: Izaiah would be one of the first patients in an international trial of an experimental drug derived from marijuana that has shown dramatic benefits in a select few patients who have already received it. The drug, Epidiolex, is a highly purified extract of cannabis that does not contain THC, the ingredient that alters mood.

Fountain said she cannot wait for Friday, when she brings Izaiah to Texas Children’s for testing.

“If this drug could work and give Izaiah any semblance of a normal life, I can’t tell you how ecstatic I’ll be,” said Fountain, who described the boy’s constant seizures, inability to talk and failure to comprehend Christmas or other holidays. “I can’t explain what it’d mean to watch him playing outside, going down a slide, taking part in an Easter egg hunt.”

Texas Childrlen’s is expected to enroll the most patients in the 10-site trial, which is being conducted on patients with a rare and severe form of epilepsy known as Dravet syndrome.

The syndrome, which occurs in about one in every …read more

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