The battle over medical marijuana, particularly when it involves children, has often been more about sentiment than science. But now researchers have results from the country鈥檚 first clinical trial using the drug for severe childhood epilepsy.
I met one of their success stories inside a ranch-style home in Pasadena. Her name is Grace Scout Rodriguez, and she looks like a typical three-year-old, wriggling around in her mom鈥檚 lap.
Her mother, Gloria, paused for a moment as we talked.
鈥淗old on, she鈥檚 having a little seizure,鈥� she said.
鈥淩ight now?鈥� I asked. I didn鈥檛 notice anything.
鈥淣ow.鈥� But then it鈥檚 over, just like that. Grace started touching my microphone, trying to grab it. 鈥淏ah!鈥� she yelled, all smiles again.
鈥淭hey鈥檙e absence seizures, she doesn鈥檛 have them very often,鈥� Gloria explained. 鈥淚 can tell in her body, and her eyes blink really fast and her head drops down just a tiny bit.鈥�
Grace has , a severe form of epilepsy related to a genetic mutation. She has several types of seizures, from the stereotypical clonic-tonic seizures, that involves convulsions, to these momentary episodes. Dravet syndrome is incurable, and sometimes children die when the seizures can鈥檛 be controlled.
鈥淭hey call it 鈥榗atastrophic,鈥� and I hate that word,鈥� Gloria said. 鈥淚t just sounds like you鈥檙e鈥oomed. And she鈥檚 not doomed. You see she鈥檚 happy, she鈥檚 all over the place, but I think that鈥檚 mostly due to Epidiolex.鈥�
鈥淚t has to be,鈥� her husband Ascencion chimed in.
鈥淚t has to be,鈥� agreed Gloria.
is an experimental liquid medication made from cannabis. manufactures it in England. The formulation contains no THC, the chemical in marijuana that causes a high. But it does contain a calibrated dose of cannabidiol, or CBD, which is believed to have anti-seizure properties.
鈥淐oming from someone who鈥檚 never tried it recreationally or otherwise, I didn鈥檛 know what to think,鈥� Gloria said. 鈥淏ut I just know that at 400 seizures a day, I thought, there鈥檚 just no way my baby can keep living like this.鈥�
When Grace has a bad seizure, she has to be hospitalized and sometimes put on a ventilator. But Gloria said even smaller seizures are dangerous.
鈥淪everal times we thought she鈥檇 broken her nose,鈥� Gloria said about the falls, 鈥淭hat鈥檚 why we don鈥檛 have a coffee table anymore, because she hit her head on it so many times. She had a little black eye once.鈥�
But since Grace started taking Epidiolex last May, the frequency has gone down, her parents said.
During the three-month, double-blind, randomized trial, no one, including Grace鈥檚 doctor, parents or teenage sister, knew if Grace was getting Epidiolex or a placebo.
But her dad Ascension said he noticed a change right away.
鈥淚 knew it was the real deal because she was acting totally different,鈥� he said. 鈥淪he wasn鈥檛 鈥榙ropping鈥� as many times.鈥�
Gloria said her daughter also became more focused. Grace still has developmental delays associated with Dravet syndrome, and knows only two dozen words, but she can interact more, and play more.
鈥淧rior to the trial, she would look at us but not see us,鈥� Gloria said. 鈥淲e would talk to her and she would just gaze at us. There was really no life in her eyes, she was just like a little zombie on all this medication. And it鈥檚 almost like we met her for the first time when she started on this medication.鈥�
After the trial finished, the family learned Grace had indeed been getting the actual drug.
She now takes it twice a day, mixed into yogurt or applesauce.
directs the at Texas Children鈥檚 Hospital. He said the clinical results from the trial for patients with Dravet syndrome were significant. The drug reduced severe seizures by 39 percent, compared to a reduction on placebo of 13 percent.
鈥淚n a medication trial for epilepsy, that鈥檚 really as good as any medicine ever is,鈥� Wilfong says. 鈥淪o the results were very strongly positive.鈥�
Side effects were less severe than other epilepsy drugs, he added.
Wilfong has heard the stories and reports about desperate families moving to Colorado, or parents of children with severe epilepsy creating their own cannabis oils to give to their children. But Wilfong cautions that those remedies can be dangerous, even if the plant is marketed as high in CBD and low in THC.
鈥淲ith Epidiolex, we know exactly how much CBD, we know that it鈥檚 only CBD and there鈥檚 no THC, we know there aren鈥檛 contaminants or pesticides in it. So I strongly encourage families to not use botanical formulations of medical marijuana.鈥�
Last June, to allow some patients in Texas access to cannabis oil, but only for a few conditions like epilepsy. The state still needs to set up the distribution system.
Dr. Wilfong says Epidiolex might just make it to the market first. New drugs need at least two successful clinical trials to get FDA approval. Grace was in the first one, and the second one is wrapping up soon, Wilfong said.
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