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His eyes are a deep walnut color and are framed by long eyelashes. Brown hair swirls atop his head in casual rebellion. His smile is all in the top lip, pulling up past his gum line to reveal a row of glimmering teeth. The first seizure of the day had come and gone. July 11 Sydney Watson, 8, tries to get older brother, Preston, to drink some sweet tea. Over the fireplace hung a photo of Preston in a straw cowboy hat.
His mouth is closed and his eyes set in a stoic glare, and he appears startlingly mature — a boy trying to look like a man trying to look like a rock star. There are times, Ana said, when she can almost see what Preston could become if the seizures would just let him. Everyone in her family has their own vision of what Preston might be. Ana tries to keep her daydreams in check. But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
The documentary about Charlotte Figi aired the next summer , and by late — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar.
The hope tugged at her. The closer the move came, the worse Preston seemed to get. He suffered another grand mal returning from a last-second beach getaway. He grew reluctant to eat or drink, which left him not only weak but also not getting the right dose of conventional medicine hidden in his food. In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it.
For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs. Drool dribbled off his chin and onto his T-shirt.
Milly, who was watching him while Ana packed up the last things, sensed a bigger seizure building. She fanned Preston, hoping to calm the blinking. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen. She has had to fill out many forms and file a change-of-patient record for the medical marijuana registry. She now is overwhelmed with worries: She had to wait another three days after picking up the oil for a lab report to come back to confirm its potency.
When the day of the first dose finally arrived, in mid-July, Ana bounded into the kitchen of her new home to pull a bottle of the oil from the fridge. Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston.
But the report was indecipherable. How could she convert these numbers into the recommended dose? Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
An hour-and-a-half later, as Preston quivered on her lap in the bathroom following the first dose, she realized this journey would be tougher than she hoped. Ana visited Colorado ahead of moving her family from North Carolina to change her residency and apply for a medical marijuana red card for Preston.
The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. The doctor ticks through 13 different medicines, but Preston has already tried each one, to little effect. August 20 Ana Watson gets a firsthand view of the trimming and drying process that goes into making the CBD oil she is using to treat her son, Preston. They fit in a medium-sized hotel meeting room They fit in a medium-sized hotel meeting room. Because of the complexity of the human brain, epilepsy drug development is a sparse field.
In , there were 28 anti-seizure drugs in some stage of clinical trials in the United States, according to the pharmaceutical industry group PhRMA.
But the genetic variability and rarity of Dravet syndrome makes the disease especially difficult for drug companies. It could cost hundreds of millions of dollars for a pharmaceutical company to get a drug all the way through federal approvals and onto the market to treat that little pocket of patients. Because of those challenges, the drugs being developed for Dravet syndrome all have a certain this-is-just-crazy-enough-to-work quality.
At the conference, drug rep after drug rep stepped to the microphone to discuss the forthcoming products. And, not coincidentally, two drug companies at the conference presented plans to bring CBD-based drugs to market. Surrounded by physicians and Ph. She talked about wanting to start clinical trials on Colorado-made CBD products.
She tried to tamp down hype. This is just a new seizure treatment. So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell. Did that mean the marijuana made him sleepy? Did the extract make him hungry? Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that.
Ketogenic diet , the doctor asks? July 29 Preston meets Dr. Alan Shackelford at his office in Denver. Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment. The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
About kids who see doctors at the hospital have tried a CBD treatment. A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome.
The mice were created in the lab of William Catterall, a University of Washington pharmacologist whose work on the brain has seen him mentioned as a Nobel Prize candidate. These genetically engineered mice are providing answers to stubborn questions about the causes of Dravet syndrome. But they are also providing confirmation of how hard the cure will be to find.
For years after French doctor Charlotte Dravet described her namesake disease, researchers were at a loss to explain what caused it.
Halfway around the world, Catterall and his colleagues were coming up with an answer. A brain nerve cell, or neuron, is like a spark plug, shooting a signal out to other cells to start a task. Genetic mutations in the sodium ion channel can create funky electrical activity in the brain, something Catterall knew could apply to epilepsy research.
In , the year Preston was born, a team of researchers in Belgium proved him right. They identified a specific sodium channel gene , known as SCN1A , in which almost all Dravet patients have a mutation. Typically, the two work in conjunction. Excitatory neurons promote a function. Inhibitory neurons stop it. Catterall likens it to having green lights in every direction for downtown traffic. Basically, the brains of Dravet patients are all gas and no brakes. The discovery helped doctors eliminate some types of medicines they had been prescribing to Dravet patients and unintentionally making seizures worse.
But it still left a challenge. The SCN1A mutation is almost never inherited. Some respond well to certain drugs. Meanwhile, a Dravet patient in Australia named Dannielle Goodwin has held a job, lived on her own and is now raising three children.
Catterall said more research is planned, and he has a proposal to study how CBD might work on his mice. The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help.
By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive. For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction.
Parents often reduce the medicine without consulting with their doctors. Meager research makes it impossible to know who is right. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures. May 8 Ana Watson has to keep a tight rein on her son, Preston, as they head off to school.
May 11 As the furniture slowly empties from the house, Preston, complete with safety goggles and boots, plays carpenter in the dining room while whirling dervish little sister Sydney practices handstands and walkovers in the new space. The vest keeps his core temperature even. May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway.
Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction.
She also knows how to persuade him to focus on what he might be doing. May 12 Preston spits out his seizure medications, which were mixed with sweet tea.
He took the first few squirts easily, but as more of the undissolved pills filled the syringe, the taste and texture became much worse. But all attempts are less and less effective. June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
June 27 Ana Watson holds her son, Preston. He wants to look out the big window and see the miles go by in their new state but is being hit by clusters of myoclonic seizures. Don reads everything very carefully: He is worried about Ana being so far from home and whether her income will cover everything she and the kids will need.
July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado.
He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time. Finally, he is able to help unload the trailer, which has held his complete attention as it followed his family across the country on the trip to Colorado. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. He spit them all out. July 7 Preston, curious about everything, watches his new pediatrician, Dr. July 12 Preston watches as Ana and her mother, Milly Raynor, argue over how to administer the CBD oil after Preston spit out their first attempt at giving it to him orally. He needs to take it. For weeks he has not been eating well or getting his full amount of seizure medications.
Preston went in for an appointment to meet his neurologist that turned into an operation for a gastrostomy tube and a hour EEG. July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
Preston has been running a fever for three days, today at a steady He has been complaining about his feeding button: They went from the clinic to an X-ray at Memorial Hospital to check the feeding tube placement. July 24 Preston gently touches his friend Hailey McGuire as she rests at his home.
There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids. August 5 Preston hides from his mom as she mixes his medications. Preston was playing with a water slide in the back yard when he fell and began to seize. August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
September 3 Ana is trying a new way of giving Preston his oil. She squirted it in and he started spitting and sputtering as soon as he tasted it. She ended up mixing it with formula and using his feeding tube. By using the oil separately she can figure his dosing ratios for tighter control.
Milly has moved into her own apartment to relieve some of the tension that can arise between her and Ana. She plans to live in Colorado as long as her daughter and the children are here.
October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare. October 7 Preston and Haleigh dance while Tami watches in the background. On his 13th birthday, he finally has one of his own, with big training wheels. Preston has suffered continuous myoclonic clusters most of the day.
He had a second grand mal seizure early in the afternoon. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons. A blue line squiggles furiously up and down on a computer screen. It is one answer to the question that has vexed Ana for the past 12 years: But, even now, the seizures remain a mystery.
Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. EEGs are taken by affixing 21 electrical wires — or leads — to standardized positions on the scalp. To doctors concerned about recommending unregulated cannabis products to their patients, the future of medical marijuana is growing in the south of England To doctors concerned about recommending unregulated cannabis products to their patients, the future of medical marijuana is growing in the south of England.
There, researchers with the drugmaker GW Pharmaceuticals are developing medicines derived from greenhouse-grown cannabis plants — tinctures and mouth sprays to treat everything from muscle spasticity to cancer pain to epilepsy. But scientific breakthroughs are not what led GW to develop the drugs. Rather, it was public opinion. The drug, Epidiolex , is now in early clinical trials in the United States.
The pattern reveals how hope can leap ahead of research even at the highest levels of drug development. Epidiolex is one of two CBD drugs being developed by pharmaceutical companies to treat pediatric epilepsies, and neither drugmaker has hidden that public interest is behind the creation of the drugs. Last summer, at a conference discussing forthcoming epilepsy drugs, Mark Davis with Insys Therapeutics — which is developing a synthetic form of CBD — said his Arizona company still had much to learn about what exactly CBD does.
Nonetheless, Insys has received special government approval for its CBD product to treat conditions ranging from epilepsy to brain tumors to pediatric schizophrenia. Supporters of pharmaceutical pot say it is consistent, quality-controlled and tested in ways that cannabis grown by medical marijuana providers is not.
However, Schultz said GW does not claim to grow its plants organically, something most Colorado medical marijuana growers pride themselves on. Roughly more kids at 12 different hospitals in the United States have received Epidiolex through a special program that allows doctors to prescribe experimental drugs to treat rare diseases, Schultz said. But the results from that program show Epidiolex may be effective for only a fraction of patients. A study of patients using Epidiolex in New York and California found that about a third of the patients studied had a greater than 50 percent reduction in seizures.
At the end of their first visit, Dr. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before. She had spent seven months planning how to get to Colorado for the treatment. She was pausing it after five days. They would like to run follow-up tests every three or four months. The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle.
Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction. Doctors then ask patients to follow up with another EEG three or four months later to gauge if any changes have occurred. But doctors believe it is a good way to measure big changes. The doctors relied on parents to report how much CBD reduced seizures. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr.
The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent.
In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress. Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying condition continue to inhibit their growth?
Four decades ago, a scientist in Utah envisioned a time when a medicine made from marijuana might be available at the pharmacy Four decades ago, a scientist in Utah envisioned a time when a medicine made from marijuana might be available at the pharmacy. Then he shocked the mice to cause a seizure. The result was illuminating: In the mid-to-late s, there was a burst of research worldwide that suggested CBD could be effective at controlling seizures in lab tests.
But, after a few straggler studies on CBD and epilepsy were published in the early s, research stopped almost completely. The scientists who worked on the early studies knew why. By the early s — the era of Just Say No — the politics of marijuana had turned too toxic to sustain the science of it, and many researchers gave up working with pot.
Only in the past two years — as attitudes toward marijuana have softened — has research on marijuana and epilepsy picked up. That compares with 21 published between and , and a mere six published in the two decades after. They look at different forms of epilepsy, different kinds of seizures and different measurements of success. At least five different types of CBD-rich marijuana therapies are represented in the studies.
The results swing wildly. The studies show anywhere from 30 to 80 percent of children seeing a significant seizure reduction while on CBD. And now even some doctors involved in the research question the findings.
The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.
But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County. Public support for the legalization of marijuana dipped during the s, but has grown dramatically in the past 45 years.
In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained. The CBD oil she was using then was a roughly But we are pressed into this circumstance.
So Ana visited her CBD provider, who gave her oil at a As the namesake for the severe form of epilepsy that afflicts many children arriving in Colorado for medical marijuana treatment, Dravet said parents often ask her about whether moving to Colorado is worth it. She tells them to wait She tells them to wait. Studying neurology in the south of France in the s, Dravet worked under a professor named Henri Gastaut.
Their research led him and another doctor to define a different type of rare epilepsy, Lennox-Gastaut syndrome, that many families have moved to Colorado to treat. And their first seizures came about through different triggers, such as fever. Their mental development often hit a wall before their preschool years, but their bodies collapsed into old age.
They bent forward and stuck their buttocks out as they walked. Their feet turned out and their ankles crooked inward. It was as though her clinic in Marseille were filled with Benjamin Buttons, the boy from literature who ages in reverse. Dravet understands the desperation that parents feel when looking for treatment for their children. For that reason, she said she hopes CBD — made in pharmaceutical form — will prove to be effective in treating Dravet syndrome.
But she said there should be more research and a clinical trial first. Instead, Preston grabbed the hose and became the shark. His hunting spared no one. Sydney escaped back inside, water dripping down her hair. And Preston laughed with such big gulps of air that it sounded as if his own joy might strangle him.
Until, suddenly, his laughter stopped. The pain from the fall while playing with a water slide appears to have caused the grand mal seizure. Milly burst from her chair and ran over to him, reaching him in time to see his eyes roll toward his brows. And then, lying there in the grass he had soaked, Preston began to shake violently. Milly gathered Preston up and sat him on her lap in a chair. He breathed heavily, wheezing in and huffing out. His eyes were shut.
The seizure — the second grand mal in a week — flustered Ana. Jason Cranford meets her on the porch. He says it keeps the cost down for patients and also creates a more personal atmosphere.
After he harvests his marijuana plants, he hangs them over the arms of a weight bench in his front room, ready to be trimmed. He extracts the oil in a lab he assembled in his garage.
When families arrive, his German shepherd is there to greet them. Soon, Jason hands Ana new bottles of cannabis oil. Ana is visiting from North Carolina to change her residency and apply for her medical marijuana red card to use the CBD oil to try to control the seizures her son, Preston, suffers because of Dravet syndrome. Now she can make any ratio she wants, Jason says.
In the next week, blinky seizures will overwhelm Preston each afternoon. A roller coaster, Ana will call it. There are still far more questions than answers. July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. If the cycle is not broken, it can lead to grand mal seizures.
Families who brought their sick children to Colorado seeking a marijuana miracle found something else: And then something magical happens. Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.
Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure. October 16 Preston rides and controls a scooter for the first time by himself in the open space in front of his home.
In that time, Preston started feeding himself, using a fork without help. But Ana swore there was a change in her son. He was more talkative, more stable on his feet. Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates. How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. She had a rough idea of the dosing, but the plan was to be evasive.
She believed the technique kept Preston from building up a tolerance to a specific dose. She also began giving him his traditional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills.
Somewhere in that mix, a harmony emerged. A drop of drool forms on his lips. His legs dangle limply beneath him. July 13 Ana and Milly work to get Preston into the house after a grand mal seizure during a hot day in the backyard. Her hand passes over two bottles of amber-colored marijuana oil and instead reaches for one of the six different pharmaceutical drugs also crowding the bag — a nasal spray called Versed that is used in emergencies to head off a grand mal. They are now propagating plants through tissue culture — essentially starting out new plants in petri dishes.
But he insisted the product is basically the same as what was given to their first patient. All around him, the house is decorated for a celebration. His little sister, Sydney, had been blowing up balloons and drawing jack-o-lantern faces on them with a marker.
Ana had been placing candy eyeballs onto frosted cupcakes. Fairy princesses and pirates and a Teenage Mutant Ninja Turtle are coming to his home bearing gifts.
Like him, many of the kids in those costumes suffer from rare forms of epilepsy. They are the first friends Preston has ever had. Sydney watches her brother with concern. Ana, returning to the cupcakes, does too. But she is undaunted. Sitting on the seat, he shuffles his feet along the ground to inch the bike forward. Sydney and the other kids from the neighborhood whiz by on their bikes, screaming in delight. Preston laughs in heaves. Up and down the one-block street he goes. The hundreds of families moving to Colorado to treat their children with medical marijuana arrive with no guarantees for a treatment that is not scientifically proven to work.
But what they have is one another. They talk one another through days filled with seizures and hug when the seizures subside. Some even live together, to split the cost of housing. The number of juvenile medical marijuana patients in Colorado has jumped more than percent since last summer.
The increase coincided with a highly publicized documentary on one young girl using marijuana to control seizures. One day, after Ana and Preston went to a brunch with families whose kids also suffer from Dravet syndrome — the rare form of epilepsy that afflicts Preston — another mom posted a photo on Facebook. It was of Preston and her daughter leaning into each other and grinning. This moment in time has been forever captured.
Let this be a testament to how wonderful our children are. Back home in North Carolina, Ana had been like many parents of children with rare diseases: She lived on a metaphoric desert island.
It was years before she met another parent whose child shared the same disease. And, even then, there were no support groups, no play dates, no joint outings to the zoo. Instead, there was Facebook, where she bonded with Dravet moms in ways that seemed impossible for her to do with the people she met in her everyday life.
In Colorado, those moms now come to her house for dinner. The most famous is the Realm of Caring. Today, the Realm of Caring serves more than patients in Colorado, with an affiliate group in California serving about Because the Realm of Caring is based in Colorado Springs, parents who move to the state — often inspired by news stories about Realm patients — frequently locate there.
That is what Ana did when she arrived in Colorado in late June. Many, including Ana, turned to Jason Cranford, a Boulder County man who owns several medical marijuana businesses but chooses to serve young patients out of his home. While the women talk, Haleigh watches a movie in a special machine that lets her stand. October 7 Haleigh is not doing well. She has a cold and is having a hard time breathing.
Haleigh has had two episodes of not breathing and turning blue. September 10 An air pulse generator that rapidly fills and deflates a vest helps Haleigh breathe.
October 3 Moina Matthias, an occupational therapist from Rehab for All in Colorado Springs, works with Haleigh on stretching and smiling. Matthias visits the home twice a week. Under state law, none of it can leave Oregon. That, coupled with a decision to not cap the number of licenses for growers, has created a surplus.
There are nearly 1 million pounds , kilograms of usable flower in the system, and an additional , pounds , kilograms of marijuana extracts, edibles and tinctures. A comprehensive market study is underway. Growers and retailers alike have felt the sting. In Oregon, the number of hemp licenses increased from 12 in to as of last week, and the state now ranks No. Colorado, which is No. Both have seen price drops for marijuana but not as significant as Oregon. Like marijuana, the hemp plant is a cannabis plant, but it contains less than 0.
Growing industrial hemp is legal under federal law, and the plant can be sold for use in things like fabric, food, seed and building materials. But the increasing focus in Oregon is the gold-colored CBD oil that has soared in popularity among cannabis connoisseurs and is rapidly going mainstream. At least 50 percent of hemp nationwide is being grown for CBD extraction, and Oregon is riding the crest of that wave, said Eric Steenstra, president of Vote Hemp, a nonpartisan organization that advocates for pro-hemp legislation.
CBD is popping up in everything from cosmetics to chocolate bars to bottled water to pet treats. One Los Angeles bar sells drinks containing the oil, massage therapists use creams containing CBD, and juice bars offer the stuff in smoothies. Dozens of online sites sell endless iterations of CBD oils, tinctures, capsules, transdermal patches, infused chocolates and creams with no oversight.
Proponents say CBD offers a plethora of health benefits, from relieving pain to taming anxiety. Scientists caution, however, that there have been very few comprehensive clinical studies of how CBD affects humans — mostly because the U.
Drug Enforcement Administration still considers cannabidiol a Schedule 1 drug, and the government requires special dispensation to study it.
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