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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. Haleigh is 5 years old and has never taken a normal step with her mother. July 30 Mallory Johnson cries over her baby as she seizes. Zoey has had at least 20 grand mal seizures in the past hour and a half.
July 24 After numerous appointments and emergency room visits, Zoey Johnson right away takes the vitals of her friend Hailey McGuire as she rests between seizures. Both children have Dravet syndrome and for a short time lived together with their moms in Colorado Springs.
July 30 Tami King watches as her daughter Hailey McGuire crawls on the back of Mallory Johnson, who is trying to care for her daughter Zoey, who is having a grand mal seizure. July 30 Mallory Johnson is feeling alone and misses family and friends back home.
What am I going to do? July 30 Tami King carries Zoey Johnson to a safe place while she is having a grand mal seizure. Zoey has had at least 20 grand mal seizures in the past hour and a half: Each time she bends her head forward, another seizure hits. July 30 Zoey Johnson does not want to ride in the ambulance. Her mother, Mallory, has used Diastat and Versed to break the cycle, but nothing is working. Both girls have Dravet syndrome, and though Hailey has made this same trip many times, she quietly watches the emergency lights from the window.
Medical marijuana providers use a variety of methods to extract CBD and other compounds from marijuana and turn them into a medicine. Parents from both organizations have led a political movement to push pro-CBD laws in state legislatures across the country.
In addition to the 23 states with medical marijuana laws, there are now another 11 states that have legalized CBD in some form.
There were 35 juvenile medical marijuana patients in Colorado in March , when CNN landed in the state to film a documentary about one of them There were 35 juvenile medical marijuana patients in Colorado in March , when CNN landed in the state to film a documentary about one of them. Since infancy, Charlotte Figi suffered from debilitating seizures due to Dravet syndrome. She practically lived at the hospital, where her parents, Paige and Matt, had signed do-not-resuscitate orders for their little girl.
Then, in February , when Charlotte was 5 years old, her parents gave her CBD, and everything changed literally overnight. Charlotte slept soundly for the first time in years. She went seven days without a seizure. Over time, the seizures dropped from thousands a month to just a few. After not speaking for six months, she started talking again. She has made leaps in her cognitive development, but, now 8 years old, she is only at the level of a 2-year-old, her mother said.
She is the embodiment of the hope that has drawn families from across the country to Colorado. For some, CBD has been a godsend. For some, it has been a dead end. Despite the positive signs, Milly still worries about which side Preston will fall on. She committed to staying in Colorado Springs for a couple of months after the move to help Ana settle.
But the transition had been harder than either she or Ana expected, and when the seizures continued, Milly decided to stay longer. Preston had a rough day with cluster seizures and over stimulation during the trip and now is fighting his medication to help him sleep. Her thoughts turn to the moment when she first heard about CBD — in the TV documentary where she saw a smiling Charlotte Figi riding a bicycle. And they were families just like us.
On his first morning as a teenager — Nov. Breakfast is his choice, so he chooses fried potatoes, slices of cheddar cheese and tortilla chips. Milly lights a vanilla-scented votive candle to sing happy birthday to him, and, on the third try, Preston huffs in and blows out the flame. How old are you?
For Preston, speech therapy this morning begins with an iPad game to identify colors and animals. Dozens of families filled the rows behind him, evidence of the patient population that has made Cranford the second-largest provider of CBD to kids in Colorado.
The Board of Health was meeting to consider putting a cap on the number of patients that medical marijuana caregivers, like Cranford, can serve. But at the start of the meeting, state health department officials had dropped a bombshell: There are many layers, and each one is sticky. Recreational marijuana stores operate under different rules from medical marijuana shops. Medical marijuana caregivers, who are supposed to provide more personalized attention, have different rules, too.
Cranford also owns a dispensary — and he has developed a line of marijuana cigarettes for the commercial market. If he sold the CBD oil through his dispensary, patients would have to pay sales tax, plus all the included costs to cover the many licensing, security and production expenses that go with operating a medical marijuana business. By operating out of his home, he said he was initially able to provide CBD on a pay-as-you-can basis.
State health department officials, though, worry that large-scale caregivers violate the spirit of the law. With Cranford, they have a more specific concern. According to their reading of Colorado law, the only people who can serve as caregivers to young medical marijuana patients are their parents.
The announcement — the first time the health department had ever expressed such a concern — baffled Cranford. But Wolk said the health department is not an enforcement agency.
After the hearing, Cranford and the parents remained confused. Potato Head, where Preston puts the eyes where the nose should go, the nose where the mouth should go and the arms on backward. But Clancy is encouraged. Despite the mistakes, Preston is focusing on the tasks longer than he used to. But the grand mals are also there again, hitting almost every afternoon the week between his party and his birthday, causing Ana to run low on rescue medicine. She puts it on speaker. But the mornings are good.
For the past couple of months, when things were looking up, Ana would occasionally share an inspirational quote with friends online. Three dozen lab employees — with more being hired — work with sophisticated equipment to produce standardized formulations of CBD oil.
But those same ambitions have increasingly led to conflict and to one notable misstep. Today, the organization shows both the optimism and the conflict of the CBD boom. So the Stanleys decided to go outside the medical marijuana system. So, last summer, the Stanleys planted 17 acres of cannabis plants in eastern Colorado.
More ambitiously, the Stanleys and the Realm of Caring began telling patients that they could soon ship CBD to all 50 states, based on an interpretation of a federal law that makes certain hemp products legal in the United States. Families who had been waiting anxiously at home would now have to move to Colorado. Stanley said the group still expects to take 3, patients off its waiting list. And the brothers say they are nearly broke trying to keep the business running while providing marijuana oil as cheaply as they can to young patients.
I believe the science will eventually catch up. Then, after the recent setbacks, she posts one of the earliest pictures of Preston from his baby book. He truly is the most amazing little boy ever!! Ana came to Colorado hoping to find something that would make her son better.
But what she found made her love him the way he is even more. And maybe that was the point all along, she would say. That it might have been enough for her just to try. That she loves him enough to never give up on him.
This time, it is not the familiar amber oil in a medicine dropper. Another Dravet mom made the infused butter at her home, using marijuana she purchased at a dispensary in Denver, and shared some with Ana. Heating up the butter, Ana draws it into a syringe, then walks up the stairs to where Preston is playing. Preston totters off to continue playing, and Ana sets the syringe down on a dresser. November 5 Ana hovers anxiously over Preston as he jerks forward during the second grand mal seizure of the afternoon.
The tightening and straining of his body last for 90 seconds. Amid small grunts and breaths, his right hand rolls in a shaking fist before the seizure ends with his blank stare. He finally relaxes into sleep. In the next three weeks, Preston suffers some of the worst seizures yet in Colorado — fist-balled grand mals during which his clamped jaw is the only thing holding back his grunts from coming out as screams.
Ana stops giving him CBD for a time, then starts again with a new formulation made from a different marijuana strain. Ana is silent, shocked that her son just said a complete sentence. Preston smiles and rocks back and forth with giggles. Five long seconds later, Ana gathers all of the emotions and hopes of their journey into one burst. We only use Grade A organically grown industrial hemp cultivated and harvested in the Mile-High sunshine.
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