Nine-year-old Alexis Carey has a rare form of epilepsy called Dravet Syndrome. She started having seizures when she was a couple months old. Her mom Clare says Alexis is a happy kid, but she can't speak or potty train.
“You have seizures that go on for over an hour and nothing stops them,” Clare says.
“It’s so hard to helplessly watch your kid seizing for an hour,” Alexis’ dad Michael Carey says. “You can’t describe how painful it is.”
“Yeah, it’s just an eternity,” Clare adds.
They’ve tried every anti-seizure medication on the market. These are powerful drugs, but they don’t help much. Dravet is an intractable, or refractory, form of epilepsy, which means it doesn’t respond well to treatment.
These seizures are the reason Clare went to the Idaho Legislature early this year asking for an exception to Idaho law which would allow her family to try a new treatment that some parents say works wonders for kids with Dravet. A law change is needed because this treatment is made from the cannabis plant and medical marijuana isn't legal in Idaho.
Clare talked to more than a dozen lawmakers from both parties and she says they were all positive and encouraging. Legislators started having closed-door discussions about changing Idaho’s strict anti-marijuana laws to get Clare what she wanted. Just a year earlier, some of the legislators had voted for a resolution that said Idaho would never legalize marijuana for any reason. One lawmaker Clare met with was Sen. Curt McKenzie, R-Nampa.
“If we can find a way that doesn’t legalize marijuana but helps these kids, I believe Idahoans and Idaho legislators are compassionate and will want to work on this,” McKenzie says.
The kinds of seizures Alexis Carey has can cause brain damage. Many children with Dravet Syndrome don’t live to adulthood. And most have developmental delays. That’s what happened to Alexis. Other than having seizures, she seemed like a normal kid until she was nearly 2-years-old.
“She was now having like 60 seizures a month and she was just slipping away from us,” Clare recalls.
“She had been walking and talking and meeting all milestones and lost everything,” Michael Carey says.
Alexis has made some progress since, she can walk with some difficulty. And if her seizures could be reduced or eliminated she could make more progress. That’s why this new cannabis-based treatment is so tempting. Many parents who have tried it report huge reduction in their kids’ seizures.
It’s an oil taken orally. It comes from a strain of the cannabis plant bred to have very little THC, the chemical that makes people high. It’s called Charlotte’s Web after a Colorado girl with Dravet named Charlotte Figi whose story pushed this issue into the national consciousness.
Nathan Fountain directs the epilepsy program at the University of Virginia and advises the Epilepsy Foundation on science. Fountain says marijuana has two main chemicals, THC and canabidiol, or CBD.
“CBD is what we think is responsible for helping seizures and certain other neurological conditions,” Fountain says. “And it doesn’t cause the high or psychoactive effects.”
He says marijuana shows a lot of potential in animal studies. But there have only been a few small studies involving people with epilepsy and marijuana.
“There are far too few people in these studies to know if it’s effective,” Fountain says. “But among these few studies it seems CBD is pretty well tolerated at sort of an intermediate dose.”
Fountain says about 75 percent of people with epilepsy respond well to available drugs. He says those people should not try marijuana because the potential risks and benefits are unknown. But about 25 percent (some estimates say a third) of people with epilepsy don’t respond to available treatment.
“So if I had a child with refractory seizures, and I’d exhausted the options of what I know to be safe and effective, I’d start to look at things that I thought were safe and effective,” Fountain says. “So it’s understandable for parents of children with Dravet Syndrome that they would look to something like a cannabis derivative.”
Some people are hailing Charlotte’s Web as a miracle cure. But the Careys are feet-on-the-ground kind of people with a scientific mindset. Michael is a doctor and Clare is a physical therapist. They’re quick to point out that the evidence, so far, is anecdotal and there is no cure for Dravet.
“It’s a treatment that might possibly reduce seizures,” Clare says.
“Compared to the medicine she’s on, the side effect profile is essentially nonexistent,” Michael adds.
Clare hoped Idaho would pass an exception allowing people with intractable epilepsy to access low-THC, high-CBD oils this year. Several states that don’t allow medical marijuana have passed exceptions like this, including conservative Utah.
Clare says lawmakers kept telling her there was a chance it would happen this year, but then she says toward the end of the legislative session she was told it would not.
The Careys wonder if lawmakers just decided it was too risky a thing to bring up right before primary elections. But lawmakers from both parties say there just wasn’t enough time to research the issue and write a bill. Sen. McKenzie says he’s optimistic that the Legislature will pass something next year.
But Senate Health and Welfare Committee Chairman Lee Heider, R-Twin Falls, isn’t convinced.
“This would not be an easy sell, I don’t think in Idaho, given the nature of our conservative Legislature,” Heider says.
He also met with Clare Carey and took part in closed door discussions. Heider won’t say if he supports the idea or not. He has a lot of questions about the details. For example, would an exception only include kids with Dravet Syndrome? There are probably less than 10 in Idaho. Or would it include anyone with some form of intractable epilepsy? That could be more than 10,000 Idahoans. Heider says he won’t form an opinion until a bill is presented.
“I don’t think anyone in the Legislature would want to jump on it today or want to sponsor it or bring it forward,” Heider says.
He thinks anything that deals with marijuana will scare lawmakers. But Sen. McKenzie says because of the low THC-content in this oil, it shouldn’t be considered marijuana at all.
“This is a separate issue,” McKenzie says. “This is not legalizing marijuana [for] medical use.”
He thinks with some education, lawmakers and the public will agree and will want to give families like the Careys access to this treatment. The Careys, meanwhile, are feeling some desperation about waiting a year to see what the Legislature will do.
They don’t want to move to Colorado where the cannabis is grown and the oil is extracted. Their life and their support system are in Boise. But they have thought about moving. In the middle of talking about the many side effects to Alexis’ current drugs, they suddenly launch into a debate of the merits of driving to Colorado, loading the car up with Charlotte’s Web and driving back to Idaho. Would they go to prison? If they did who would take care of Alexis and their two other kids?
“Would a prosecutor even take a case like that, and say 'I’m going to prosecute you for having hemp oil with 0.3 percent THC in it?'” Clare wonders out loud. And Michael repeats, “you don’t know, you can’t take the risk,” every time she pauses.
It’s a debate they’ve had before. Clare says sometimes she almost starts laughing.
“It does just seem ludicrous," Clare says. “But it’s not really funny at all because at the end of that is our suffering child.”
Find reporter Adam Cotterell on Twitter @cotterelladam
Copyright 2014 Boise State Public Radio