Kelly Fisk’s desperate search for something — anything — to control her 4-year-old son’s seizures has led her to a medication derived from marijuana.

The only problem is it’s illegal in Montana.

The national news has produced plenty of stories lately about “Charlotte’s Web,” a strain of marijuana thought to treat debilitating seizure disorders. It was named for Charlotte Figi, a 5-year-old Colorado girl who suffers from a rare and severe seizure disorder called Dravet’s syndrome.

When no epilepsy medication seemed to help, Charlotte’s mother began calling medical marijuana shops as a last resort.

Two years after Charlotte, who had been wheelchair-ridden and could barely speak, began taking the cannabis oil she is now largely seizure-free and able to walk and talk.

The girl’s seemingly miraculous recovery has parents making pilgrimages to Colorado with their sick children in hope the cannabidiol (CBD)-rich marijuana will quell their child’s seizures.

While the oil is high in anticonvulsant and anti-inflammatory properties, it’s low in the chemical that produces a high in users.

Fisk, of Kalispell, knows there’s no guarantee CBD oil will work for her son, Noah, but she would like the opportunity to consider it as an option. And moving to Colorado isn’t an option for the Fisk family.

“I want the freedom to be able to try it,” she said. “I’m looking for someone who’ll listen to our story. I have to change this. I have to be proactive.”

Fisk contacted a local Republican legislator about getting the law changed in Montana to allow the use of CBD oil, but didn’t get rousing support from the politician.

He told her he was term-limited in the Montana Legislature and that she may have more luck contacting a Democrat.

This is not a partisan issue, Fisk maintained.

She’s waiting to see what happens in Utah, where legislation is being proposed to allow Utah residents to buy CBD supplements without fear of prosecution after meeting certain requirements.

The Utah bill would allow only finished hemp products to be brought across state lines, not raw hemp in its plant form, and only those products with a very slight amount of tetrahydrocannabinol or THC, the chemical the produces a high.

“Utah could set a precedent,” Fisk said.

Alabama is another state considering legislation to legalize CBD oil. More than 200 people turned out recently to rally support of what they’re calling Carly’s Law, named after a girl with a rare genetic seizure disorder.

Though allowing CBD oil to be shipped to Montana is the biggest hurdle, another challenge is the unfavorable perception many people have of giving a marijuana-based product to children, Fisk said.

“I think some people can’t detach themselves from the stigma,” she said. “I don’t want my kid to be high. I just want him not to have seizures.”

Noah was only 9 months old when Fisk noticed something wasn’t quite right.

“I saw his eyes roll to the back of his head and thought, that’s an odd thing,” she recalled. The episode lasted only a couple of seconds, but it was concerning enough to seek medical advice.

There were other symptoms, too. Noah’s development was delayed to the point where he was getting physical therapy at 6 months because he wasn’t rolling over. At the time his doctor shrugged it off as low muscle tone.

It would take almost two years to get a diagnosis.

Fisk and her husband, Steve, were living in Bozeman when the brief seizures began. They were referred to a specialist in Billings but didn’t get a clear answer about what was going on. When they moved to Kalispell three years ago, doctors here referred Noah to Sacred Heart Children’s Hospital in Spokane.

Fisk was taken aback when Noah’s doctor doubted he had a seizure disorder, even though she showed him video she had taken of Noah during a seizure.

“The doctor thought I was making it up,” she said. “It was disheartening.”

A 24-hour monitoring session, however, indicated Noah had 20 seizures overnight, so he was put on various medications. Noah currently is taking three medications that cost $2,000 a month, but he’s still not seizure-free.

A year ago they returned to the Spokane hospital, where Noah’s doctor said he believes the boy has an intractable form of epilepsy. The Fisks are waiting for the results of genetic testing for further determination of the kind of epilepsy Noah has.

Fisk said his epilepsy could be genetic because his father had a form of epilepsy he outgrew, and there’s a nephew in the family with a more severe seizure disorder.

For now, Noah is seeing occupational, speech and physical therapists weekly because of his developmental delays.

Fisk said they’re fortunate Noah is covered under the state’s Healthy Montana Kids insurance program, because last year alone his medical bills topped $120,000.

 Although success stories about the “Charlotte’s Web” CBD oil are circulating and giving parents with afflicted children some measure of hope, some medical experts have warned that little is known about the potential long-term cognitive and psychiatric effects on children taking the oil.

A recent CBS News segment featured comments from the director of the Marijuana Research Laboratory at Columbia University in New York — one of a just a few U.S. labs that perform government-funded studies on marijuana — who said she is “uncomfortable” with the lack of scientific data as it pertains to the long-term effects of CBD oil.

Parents like the Fisks, though, are willing to roll the dice if it means relief for their children.

Fisk said she asked a doctor in Spokane what the worst-case scenario would be if Noah has intractable epilepsy. She was told in no uncertain terms that her son could die.

“I cried all the way home,” she recalled.

A new pediatric neurologist in Kalispell, incidentally from Colorado, has given the family hope, she said.

“He said, ‘Don’t panic. We haven’t exhausted all of our resources yet.’”

Features editor Lynnette Hintze may be reached at 758-4421 or by email at lhintze@dailyinterlake.com.