"Charlotte's Web" Medical Marijuana Bill Isn't Enough for Many Parents of Epileptics

Paula Crews, a suburban mom with short black hair, dumps a stick of butter into a double boiler and stirs in her secret ingredient. Her 24-year-old son, John, waits expectantly at the white Formica counter in their West Broward kitchen, watching while his mom mixes the butter into a pot of melted chocolate. Finally, she pours the candy into a rectangular mold and puts it in the fridge to cool.

A few minutes later, John pops a piece of his mother's creation into his scruffy face. In about a half-hour, the frat-boy archetype in a Guy Harvey T-shirt will be comfortably numb from the marijuana baked inside the homemade candy bar.

"And that's how you make chocolate with canna-butter," Crews concludes proudly. "That's my son's medicine."

Like parents of other epileptics, Crews was hopeful last month when Gov. Rick Scott signed the Compassionate Medical Cannabis Act of 2014, a bill that makes a mild strain of weed available to medically suitable patients like John. But many of the Republicans who supported the measure now admit they hope the law helps stall a full medical pot reform initiative on this November's ballot.

"Our mission was to provide just enough to let the sick people in Florida have access to a noneuphoric brand of medicine," says Sen. Aaron Bean, one of the bill's coauthors. "I absolutely do not support full legalization because it can widely be subject to abuse. We passed a bill that's tightly written -- a baby step."

Crews, who asked New Times to change her family members' names because of the legal risk, believes the low-THC strain allowed by the bill won't be potent enough to make a difference for her son, who has subclinical seizure disorder. She's far from alone. An estimated 125,000 children in Florida suffer from severe epilepsy, and according to Crews and some experts, many kids might have conditions too serious to treat with the "Charlotte's Web" strain that's now legal in Florida.

The story of the Crewses, who have set up a veritable weed bakery in their kitchen, opens a window into how some parents must evade the law to keep their children healthy. "I realize I'm already risking my home and everything I've worked my entire life for," Paula Crews says. "But we have literally no other options."

Marijuana entered the doctor's office in 1992, when California activists successfully pushed for reform. Since then, 23 other states have followed suit, many experimenting with different models. In the Golden State, for instance, just about anyone with back pain can walk into a head shop and walk out with weed. In New Mexico, there are only three approved dispensaries, so medical pot is nearly impossible to get. Most recently, New York passed a reform law with one caveat: The medicine can't be smoked.

But a unique debate is taking place in Florida: A middle ground has been forged between all-out medical legalization and prohibition. It's centered on "Charlotte's Web," which has become a catch-all term for low-THC weed.

The six brothers in Colorado kicked off the idea in 2011 when they crossbred marijuana and hemp. The strain wouldn't get people high but would deliver some of the medical benefits of pot. In 2013, a Coloradoan named Paige Figi enlisted the Stanleys to help her daughter Charlotte. The 7-year-old was experiencing 300 grand mal seizures a month, and doctors recommended placing her in a medically induced coma. Instead, Figi used a low-THC oil created by the brothers.

In Weed, a CNN documentary that aired in January, Figi touted how the drug helped her daughter become active and vivacious. Her seizures dropped dramatically. And after the two-part series hosted by Dr. Sanjay Gupta aired, Charlotte Figi became the first poster child for low-THC medical pot.

Her story caught fire in South Florida this February when parents like Jacel Degadillo from South Miami and Seth Hyman from Weston lobbied to allow a similar strain in Florida. Three Republican lawmakers introduced a bill allowing pot modeled after the Stanley brothers' formula, with more than 10 percent cannabidiol, which can reduce seizures, but with only 0.8 percent of the THC that gets people stoned. The bill passed the Senate 30-9, with Gov. Scott signing it into law June 6. Beginning next January, five dispensaries will be allowed to sell oil made from the medicinal hemp.

If anyone should have been celebrating the law, it was the Crewses, whose story closely mirrors that of the Figis.

Born and raised in Davie to an IT specialist mom and a dad who owns a pest control business, John didn't speak until he was 5 or read until he was 9. He was sent to an autistic school. "He didn't do anything well," Paula Crews recalls. "He wasn't there and could barely communicate. He would just scream."

John didn't know why he was so different from his older sister or why the world seemed to be conspiring against him. In sixth grade, he punched a bully in the face for saying he must have dumb parents because he was so dumb. His report card was lined with D's and F's. Teachers thought he was a class clown because he would ask questions that had just been answered.

"You could tell me something and I would be interacting with you and seem completely there, but afterward I would remember nothing about it," he explains.

The truth was that John was enduring hundreds of nearly symptomless seizures every day. The neurologist who diagnosed his condition put him on a regimen that screwed up his liver. He switched to another one that made him gain 30 pounds. A third prescription turned John into a suicidal mess, his mom remembers.

"All he wanted to do was draw pictures of guns to his head," she says. "After that, I was done with pharmaceuticals. I'd rather have seizures."

Paula took her son off all of those medications and enrolled him in a biofeedback program at Nova Southeastern University. There, a researcher hooked the adolescent up to a machine that allowed him to control a virtual airplane using his mind. A few months into the therapy, John was a whole new person. His grades soared to straight A's, and by the end of the eighth grade, he was deemed Student of the Year. The next year, he became a star debate student, winning sixth place in a national competition. "I thought it was all due to the biofeedback," Paula says. "But it wasn't."

She wouldn't learn the truth until after John graduated and moved to Fort Myers, where he studied hospitality at Florida Gulf Coast University. When he was busted for smoking pot in the dorms, Paula ordered him home to attend Florida Atlantic University instead. She banned him from smoking weed.

John's grades suddenly plummeted. He dropped out after only one semester. That's when John admitted the truth: He'd begun recreationally smoking pot with friends when he was 12. The seizures had ceased when he smoked regularly.

Paula warily agreed to let her son self-medicate again but quickly saw the problem with that approach. In 2010, he was busted in Miami with a few of his friends. The cops cited John for smoking a joint in a park.

That's when Paula cooked up a plan: Her son would illegally score the weed, and she would prepare it in discreet edibles at home, decreasing his risk of arrest. John now works in a restaurant and lives in Dania Beach with his fiancée, but he still has easy access to a house full of pot treats made by his mom.

He says he doubts Charlotte's Web would help his condition because of the large number of seizures he suffers without marijuana. And just as important, November's ballot initiative would allow for new research into medical weed as a treatment for seizures -- a scientific process banned in the state at the moment.

"John is willing to be a guinea pig and try the oil and communicate about how it affects him since younger kids can't," Paula says. "But the way this law is written, there won't be room for any research into strands that will work in case this one doesn't."

Some experts say the Crewses are right to be skeptical of Charlotte's Web. "Charlotte Figi has a very specific disease, and epilepsy is a big category," says Dr. Jeff Kamlet, a Miami Beach internist and a fellow of the American Society of Addiction Medicine. "We have no idea what this strain will do to other people who have seizures, and to limit this to such a narrow scope is absurd."

Even Chris Stubbs, an analytical chemist who helped the Stanley brothers design Charlotte's Web, says the strain is limited in what it can do. "From what I see in the forums and online support groups is that parents play with the 120 cannabinoids in marijuana to find the right mixture for the kids," he explains. "It's a tinkering process. Many parents find relief easily, but others have to try a host of other things, like THC acid."

Parents of younger children with symptoms like John's are in an even tougher spot. If Charlotte's Web is indeed too weak to alleviate their symptoms, little kids can't score the drug on the street the way John does.

Degadillo helped fight for Florida's bill but believes full medical marijuana is the only option that can truly help her 3-year-old son, Bruno, who suffers from Dravet syndrome, the same disorder Charlotte Figi has. The difference is that Bruno's seizures are so intense that he takes adult medical doses. The former schoolteacher now plans to move her family to Colorado, where she'll be able to mix strands to find the right combination for her son. It gives her hope that he'll someday lead a more normal life.

"My son is nonverbal, so I don't know what these medications are doing to him," she says. "He just cries and cries, and I don't even know if he's hallucinating. It could be because of the medications, but I don't know because he can't tell me."

Hyman feels the same way. His 8-year-old daughter, Becca, has many severe disabilities because part of her one chromosome is missing. She doesn't walk or talk and uses a feeding tube. Becca has 50 to 200 seizures per day and regularly stops breathing. She can't be left alone for one second.

The Charlotte's Web formula has never been tested on Becca's condition -- 1p36 deletion syndrome -- so her dad has no idea if relief is in sight. Hyman says Amendment 2 would allow research into better treatments for her.

"For all of her problems, it's her intractable epilepsy that's making her regress," he says. "Is her life worth less than any other child's who lives in another state?"

Amendment 2's fate is far from certain, though. John Morgan, an Orlando personal injury attorney, has poured $4 million of his fortune into the pro- pot lobby, while casino executive and GOP sugar daddy Sheldon Adelson recently wrote a $2.5 million check to try to beat the bill. In November, voters will ultimately decide.

For Paula and John Crews, it would mean an end to street-corner drug deals and surreptitious pot-cooking sessions.

"To deny this to parents is just so criminal," she says. "Charlotte's Web is so restricted, so limited. Marijuana is a miracle drug that's been stigmatized. My son is proof that it's medicine."

Send your story tips to the author, Allie Conti.

Follow Allie Conti on Twitter: @allie_conti

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