Kids with severe epilepsy are seeing dramatic results from a strain of marijuana called “Charlotte’s Web”.
It was bedtime for Zaki. His mother, Heather Jackson, went through the routine of pulling together a makeshift bed next to her own and tucking her 10-year-old son into the blankets. He couldn’t sleep in his parents’ bed tonight – Dad had to work in the morning.
Jackson sat by Zaki as he fell asleep; half playing with her phone, half watching and waiting for something to go wrong. She kept an eye on him because he suffers from DOOSE Syndrome, also known as myoclonic-astatic epilepsy, a form of medication-resistant epilepsy that can be difficult to treat. Zaki experienced as many as 200 seizures per hour in 2008. Diagnosed as an infant, he had endured 500,000 seizures by the time he turned five.
So Jackson worried. It was part of the routine. But that night, Zaki didn’t seize. He slept through the whole night for the first time in a decade.
They had Charlotte’s Web to thank – a strain of cannabis grown in Colorado. Marijuana was just the medicine Zaki needed.
“We were at a point where that was it – if we didn’t try it, there was nothing else,” Jackson said.
Charlotte’s Web is rarely used recreationally – it was even called “Hippie’s Disappointment” before its medical qualities were realized. The low concentration of tetrahydrocannabinol (THC) in the strain means those who use it don’t experience the typical psychoactive “high” associated with marijuana. A different component of the plant, cannabidiol (CBD), is to thank for reducing patients’ seizures.
Before using Charlotte’s Web, Jackson said the family went through 17 pharmaceuticals – even though after the fourth one you have a .08 (percent) chance of actually finding one that’ll work.
Zaki was on that fourth pharmaceutical when he was just 16 months old. And it was considered a “black box medication” by the FDA, meaning it had a high fatality risk. .
The majority of the medications Zaki tried had extreme side effects. One of the drugs kept him from sweating for two years. At another point, his doctors put him on steroids and his weight doubled from 29 to 66 pounds. He also had major, major, violent, anger issues, Jackson said. And he had cataracts. They actually caused cataracts.
Zaki went through another 13 pharmaceuticals with no success and Jackson became desperate.
He had to be constantly monitored. “With the severity of the situation, we were almost hostages at home,” Jackson said. The family worked together to watch Zaki while running errands, cooking dinner and even while going to the bathroom or showering.
“Normal functions of life that you need to do – you can’t – you have a child that needs to be watched basically 24/7,” Jackson said.
Zaki had his first tonic seizure on Oct. 19, 2011. His muscles contracted; his entire body stiff to the point he stopped breathing. Jackson knew they needed to find a solution quickly. Any seizure could have been her son’s last.
While watching “Weed Wars” on TV one day, Jackson saw a story about five-year-old Jayden, who suffered from another severe seizure disorder called Dravet Syndrome. Jason, Jayden’s father, began treating his son with a CBD tincture (similar to Charlotte’s Web) – and it appeared to work.
Weeks later, Zaki’s in-home nurse asked Jackson if she’d ever considered trying cannabis for his seizures. Jackson had, but she didn’t know where to start. After getting some phone numbers from the nurse, Jackson found Paige Figi.
After learning about the strain of marijuana used by Figi’s daughter, Jackson sought help from The Realm of Caring, a non-profit organization that helps families in Colorado find the proper strain of medical marijuana for their specific health needs. For Zaki, the answer was Charlotte’s Web.
Then came that first peaceful night of sleep for the Jackson family in years. After that night, Zaki had a full 48 hours before any more seizing occurred. It took about three months to get the dosing right, but his last seizure was Oct. 4, 2012.
Jackson now helps families dealing with similar situations as Executive Director for The Realm of Caring. She’s an advocate for medical marijuana with the belief that it is a very safe option and potentially very effective.
Over 100 families have moved to Colorado with help of The Realm of Caring in order to gain access to Charlotte’s Web for their children. The Selmenski family was one of them. Their daughter Maggie started having tonic-clonic seizures (stiffening limbs followed by jerking of the limbs and face) six weeks after she was born and experienced more than 500 spasms and jerks a day. In October 2012, the Selmenskis were told Maggie wouldn’t live very long.
“We really started looking for anything we could to strengthen and restore her body,” said Rachel Selmenski, Maggie’s mom.
The Selmenskis moved from Tennessee to Colorado in December 2013 so Maggie could begin using Charlotte’s Web. In just under one month, Maggie became more alert, slept better, had an increased appetite and regular bowel movements. The drug was working.
The Selmenskis are without direct support from their extended family – a crucial part of tending to a child with needs like Maggie’s – because of their move to Colorado. But many families have found the support they’re missing through The Realm of Caring. “These people get what we’re going through, so we’ll get together and you’ll have one kid seizing on the floor, another kid yelling outbursts and some overly sedated toddlers,” Selmenski said. “It’s a huge family and it’s an instant connection.”
Nonetheless, Selmenski said, being separated from their family in Tennessee can be difficult.
Selmenski has become an advocate in both Tennessee and Iowa – where she grew up – in order to change state laws for the legalization of marijuana. She has ongoing discussions with senators in both states. Selmenski has even taken on Iowa Republican Sen. Charles Grassley. “He’s always been against medical marijuana, but he was very open to hearing about Maggie and seeing what results we will have,” she said.
For Selmenski, education is key. She began extensive research on marijuana policy and medical effects months before Maggie started using cannabis. As a Schedule I substance, the federal government hasn’t backed much research on marijuana.
“It’s a Catch-22,” Selmenski said. “There is plenty of scientific research showing marijuana is effective, but we don’t have the government research showing marijuana is effective.”
Doctor J. Hampton Atkinson, co-director of the California Center for Medical Research and professor of psychiatry at the University of California, has a slightly different point of view. “General acceptance of any treatment – including cannabis – by the medical community depends on solid research data demonstrating its benefits and safety,” Atkinson said. “There is limited data at this point for any condition and much work needs to be done.”
However, the government acknowledges the use of marijuana for medical purposes. On Oct. 7, 2003, patent number 6,630,507 was published for cannabis to be used as an antioxidant and neuroprotectant (a drug that helps protect neuron structure or function). The patent was filed under the property right of the United States, represented by the Department of Health and Human Services.
This frustrated Selmenski.
“On one side, they’re saying there’s no medicinal use for marijuana,” she said. “On the other side, they’re telling us they have a patent. That’s so contradictory.”
The government’s two-sided stance on legalizing medical marijuana makes it difficult for children like Maggie and Zaki to access the medicine they need.
Results from The Realm of Caring are often ignored by the government because the data tends to be more personal instead of research-based. Yet the organization has been significantly successful. They keep data on which strains work well, interactions with other medications and success rates. Zaki isn’t the only one seizure-free under their guidance. There’s a Facebook group with over 200 members who are now seizure-free.
“An epidemiologist would think a 30 percent reduction is a success within these groups of kids,” Jackson said. “We need the science to catch up with what we’re seeing clinically.”
In some ways, science is catching up. Dr. Francis Filloux, a pediatric neurologist at the University of Utah School of Medicine, wants to de-stigmatize CBD use in children. He wrote a letter to the Controlled Substance Advisory Committee in Utah and said, “CBD oil is very high in CBD but has a THC content that is as low, or lower, than other natural substances such as hemp-based creams that can currently be legally purchased in Utah. CBD oil is not a psychoactive substance; it does not produce a “high” and is not mind-altering in its effects.” Many neurologists are following suit, realizing the potential benefits cannabis has for those suffering from epilepsy, in particular.
Zaki is just one example of many who show the benefits of using strains of cannabis like Charlotte’s Web. “Developmentally, he was 28 to 41 months behind, so I had an almost 10-year-old who was incontinent, didn’t know his colors – just very globally delayed,” Jackson said. “Now he’s talking in five – six word sentences, he’s learned his colors, he’s toileting during the day and he’s hilarious.”
She can’t help but wonder how Zaki could be now if she’d found Charlotte’s Web years earlier. Regardless, the family is grateful for the incredible improvements the treatment plan has given their son so far. Jackson said, “He’s going to change the world in his own way.”