When 9-year-old Alexis Carey gets home from school, her mom helps her into her favorite bean bag chair. Clare Carey kneels down to remove her daughter’s foot braces, which she needs to walk.
“She’s in them all day, so when she gets home from school, we just kind of give her a break,” Clare said.
Alexis can’t talk, but she’s quick to smile. Parents Clare and Michael Carey say their daughter is a happy kid, but can’t talk or master potty-training.
‘So Hard To Helplessly Watch Your Kid Seizing For An Hour’
Alexis has a rare form of epilepsy called Dravet Syndrome. She started having seizures when she was just a few months old.
“You have seizures that go on for over an hour and nothing stops them. Some children will have ones that put them in a coma,” Clare said.
“It’s so hard to helplessly watch your kid seizing for an hour. You can’t describe how painful it is,” Michael said.
These kinds of seizures can cause brain damage. Many children with Dravet syndrome don’t live to adulthood, and most get developmental delays. That’s what happened to Alexis. Aside from her seizures, she seemed like a normal kid until she was about 2 years old.
'A Treatment That Might Possibly Reduce Seizures'
“She was now having like 60 seizures a month, and she was just slipping away from us,” Clare said.
“She had been walking and talking, and meeting all milestones, and [then she] lost everything,” Michael said.
The Careys have tried every anti-seizure medication on the market, but these powerful drugs don’t help much. Dravet is an intractable form of epilepsy, which means it doesn’t respond well to treatment. But now some parents are trying something new and reporting huge reductions in seizures.
The treatment involves consuming cannabis oil with a low level of THC. Some people are hailing it as a miracle cure, but the Careys are quick to point out the evidence has only been anecdotal. Still, the Careys wanted to try it, but they couldn’t because Idaho doesn’t allow medical marijuana.
“It’s a treatment that might possibly reduce seizures,” Clare said.
“Compared to the medicine she’s on, the side effect profile is essentially nonexistent,” Michael said.
'This Would Not Be An Easy Sell'
The family considered moving to Colorado, where the oil is extracted. Instead Clare went to the Idaho Legislature. She met with lawmakers and asked them to pass an exception to Idaho’s strict anti-marijuana laws to allow parents to use this oil. Several states that don’t allow medical marijuana have passed similar exceptions, including conservative Utah. Idaho lawmakers have started discussing the option behind closed doors. One of them was Sen. Kurt 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 said.
But Sen. Lee Hieder, who chairs the Senate health and welfare committee, isn’t convinced.
“This would not be an easy sell, I don’t think, in Idaho, given the nature of our conservative Legislature,” said Hieder, R-Twin Falls.
Heider also met with Clare and took part in closed-door discussions, but won’t say whether he supports the idea. He still 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’s probably more than 10,000 Idahoans. Hieder 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,” he said.
‘This Is Not Legalizing Marijuana [For] Medical Use’
Hieder thinks anything to do with marijuana will scare lawmakers. But McKenzie says because the oil contains only a low level of THC, it shouldn’t be considered marijuana at all.
“This is a separate issue,” McKenzie said. “This is not legalizing marijuana [for] medical use.”
The Careys hoped lawmakers would pass something this year, but toward the end of the session, they were told it would not happen. They wonder whether lawmakers decided the issue was too risky 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. McKenzie says he’s optimistic that the Legislature will pass something next year.
