Cannabis oil available as treatment for children with epilepsy starting today

Posted at 10:46 PM, Jun 30, 2014
and last updated 2014-07-01 11:54:25-04

SALT LAKE CITY -- Charlee's Law takes effect today. It allows parents of epileptic children in Utah to possess cannabis oil without fear of prosecution.

Meanwhile, Primary Children's Hospital is one step closer to testing it on children with severe epilepsy but needs government approval.

Primary hopes the study could lend scientific credibility to what some have called a miraculous extract.

"We're excited about every treatment, every possibility," said Jennifer May, Co-founder of Hope 4 Children with Epilepsy.

A British pharmaceutical company has now agreed to let PCH test Epidiolex children ages 2-17 with severe epilepsy.

The drug contains pure cannabidiol oil.

Colorado parents say the extract has significantly reduced seizures for some epileptic children. However, since the government puts cannabis in the same category as heroin and LSD, the Drug Enforcement Agency must sign off on the trial.

That hasn't happened so it's unclear when the study begins.

Here's the other hurdle for families interested.

"The Epidiolex IND [Investigational New Drug] is only going to allow for 25 of the most severe patients and there are many more than that," May said.

If parents get CBD oil from Colorado, they can't participate in the study. It's one or the other.

The Henrie family from Clinton supports the study but thinks Colorado is the faster route for their 8-year-old son Cutler, who suffers from cornical dysplania.

"He's tried eight different seizure medications and he has a VNS, a Vagus Nerve Stimulator, so Cutler has gone through surgery," said Natalie Henrie.

Cannabis oil may be the last hope to stop Cutler's seizures and starting Tuesday, his parents will have legal access to see if it works.

"To have this door open up, it's amazing," said Natalie Henry.

The family will need their doctor's approval, plus a registration card through Utah's health department. That program begins July 8.

Even then, they'll have to wait until the fall for Charlotte's Web to be harvested.

It's a lot of loop holes but the Henries are willing to jump through them for a chance at an extract that could change their son's life.

"Even if it reduced his seizures by a fraction it would be a miracle to us," Natalie Henrie said.

Hope 4 Children with Epilepsy says Colorado's Realm of Caring Foundation, that produces Charlotte's Web, has now designated some plants as hemp, not marijuana. H4CE says that's significant and Realm of Caring plans to mail the extract in the fall so families don't have to drive across state lines to get it.