charlotte’s web cbd oil for seizures

Girl who inspired Charlotte’s Web marijuana oil dies

DENVER — A girl with a rare form of epilepsy whose recovery inspired the name of a medical marijuana oil that drew families of children with similar health problems to Colorado for treatment has died after being hospitalized and treated as a likely coronavirus patient, her mother said Wednesday. Charlotte Figi was 13.

Charlotte, who lived in Colorado Springs, died Tuesday after suffering a seizure that resulted in cardiac arrest and respiratory failure, her mother, Paige Figi, said in a statement. Charlotte tested negative for the coronavirus when she was initially admitted to a hospital on Friday but was still treated as a likely COVID-19 case when she was returned to the hospital Tuesday after the seizure because her whole family had been sick for a month with suspected coronavirus symptoms, Figi said.

Her death was first announced by the group co-founded by Paige Figi, Realm of Caring Foundation, to help other families who uprooted their lives for a chance to use cannabis to treat their children’s seizures before marijuana became more widely legalized in the United States.

Charlotte’s case and the advocacy of her parents played a significant role in drawing attention to the potential that a drug derived from cannabis could be used to treat epilepsy.

“Some journeys are long and bland and others are short and poignant and meant to revolutionize the world. Such was the path chosen by this little girl with a catastrophic form of epilepsy called Dravet Syndrome,” the announcement said.

At age 5, Charlotte suffered as many as 300 grand mal seizures a week, used a wheelchair, went into repeated cardiac arrest and could barely speak.

With doctors out of ideas, Paige Figi began calling medical marijuana shops. Her symptoms largely disappeared after she began taking an oil created using a strain of marijuana with low THC, the drug’s psychoactive compound, but high in the chemical CBD, created by Stanley Brothers, a marijuana business in Colorado. It later named it after her.

Federal prohibition of marijuana has limited research into marijuana and individual compounds’ health effects, but Charlotte’s family and hundreds of others shared their own experience using it for seizure disorders.

U.S. health regulators in 2018 approved the first prescription drug made with CBD to treat rare forms of epilepsy in young children.

In an online tribute, Stanley Brothers praised Charlotte as “a light that lit the world.”

“She grew, cultivated by a community, protected by love, demanding that the world witness her suffering so that they might find a solution,” it said.

For most, the coronavirus causes mild to moderate symptoms such as fever and cough. But for some older adults and the infirm, it can cause pneumonia and death. More than 300,000 people worldwide have recovered.

“Charlotte’s Web” marijuana supposed cure for kids’ seizures but doctors skeptical

COLORADO SPRINGS, Colo. — Parents are flocking to Colorado with their sick children to find “Charlotte’s Web,” a strain of marijuana thought to treat debilitating seizure disorders.

The strain was named for 5-year-old Charlotte Figi, who had been suffering from a rare disorder called Dravet’s syndrome, which caused her to have as many as 300 grand mal seizures a week.

Charlotte used a wheelchair, went into repeated cardiac arrest and could barely speak, but doctors were out of ideas for help. Then as a last resort, her mother began calling medical marijuana shops.

Two years later, Charlotte is largely seizure-free and able to walk, talk and feed herself after taking oil infused with a special pot strain. Her recovery inspired the Charlotte’s Web name for the marijuana strain she takes in oil form that is bred not to have THC — the ingredient that make users high.

Special pot strain attracts pediatric patients 10 photos Her story also spread on social media, and inspired an influx of families with seizure-stricken children to Colorado from states that ban the drug.

“She can walk, talk; she ate chili in the car,” her mother, Paige Figi, said as her dark-haired daughter strolled through a cavernous greenhouse full of marijuana plants that will later be broken down into their anti-seizure components and mixed with olive oil so patients can consume them. “So I’ll fight for whoever wants this.”

The family of 20-month-old Maggie Selmeski moved from Tennessee to Colorado last November seeking Charlotte’s Web. Her mom, Rachel, told CBS News’ Teri Okita that her daughter would suffer up to 500 seizures a day, and epilepsy medication did not help. However, Charlotte’s Web has reduced the seizures drastically, she said.

“I can watch people’s face as I tell them we’re giving her cannabis oil, and it’s like . a little questioning,” she said.

Doctors warn there is no proof that Charlotte’s Web is effective, or even safe.

In the frenzy to find the drug, there have been reports of non-authorized suppliers offering bogus strains of Charlotte’s Web. In one case, a doctor said, parents were told they could replicate the strain by cooking marijuana in butter. Their child went into heavy seizures.

“We don’t have any peer-reviewed, published literature to support it,” Dr. Larry Wolk, the state health department’s chief medical officer, said of Charlotte’s Web.

“I have heard of this and have deep empathy for the desperation of parents with ill children,” Haney said. “Cannabis is not the world’s most dangerous drug by any stretch but that does not mean it is without potential long-term cognitive and psychiatric consequence, especially when it comes to exposure to children.”

She added, “The best thing we can do for these patients and their parents is prove this potential medication works.”

The lack of scientific evidence hasn’t stopped more than 100 families from relocating to Colorado since Charlotte’s story first began spreading last summer, according to Figi and her husband and the five brothers who grow the drug and sell it at cost through a nonprofit. The relocated families have formed a close-knit group in Colorado Springs, the town where the dispensary selling the drug is located. They meet for lunch, support sessions and hikes.

“It’s the most hope lots of us have ever had,” said Holli Brown, whose 9-year-old daughter, Sydni, began speaking in sentences and laughing since moving to Colorado from Kansas City and taking the marijuana strain.

Amy Brooks-Kayal, vice president of the American Epilepsy Society, warned that a few miraculous stories may not mean anything — epileptic seizures come and go for no apparent reason — and scientists do not know what sort of damage Charlotte’s Web could be doing to young brains.

“Until we have that information, as physicians, we can’t follow our first creed, which is do no harm,” she said, suggesting that parents relocate so their children can get treated at one of the nation’s 28 top-tier pediatric epilepsy centers rather than move to Colorado.

However, the society urges more study of pot’s possibilities. The families using Charlotte’s Web, as well as the brothers who grow it, say they want the drug rigorously tested, and their efforts to ensure its purity have won them praise from skeptics like Wolk.

For many, Charlotte’s story was something they couldn’t ignore.

Matt Figi hugs and tickles his once severely-ill 7-year-old daughter Charlotte, as they wander around inside a greenhouse for a special strain of medical marijuana known as Charlotte’s Web, which was named after the girl early in her treatment, in a remote spot in the mountains west of Colorado Springs, Colo on Feb. 7, 2014. AP Photo/Brennan Linsley Charlotte is a twin, but her sister, Chase, doesn’t have Dravet’s syndrome, which kills kids before they reach adulthood.