The first time Gavin had a seizure, he had just turned 3. It was a grand mal seizure, the kind where people convulse uncontrollably due to irregular activity in the brain.
Melissa Ragsdale, Gavin’s mother, had never seen a seizure before. Little did she know, she would witness her son have thousands of seizures over the next five years.
Gavin is 8 now. He lives in Colorado Springs, Colo., with his mother, and he is a medical refugee. He and his mother, who previously lived in Fairway in Johnson County, were able to settle in Colorado thanks to the generosity of another medical refugee family and many others woven together through a tight-knit network of patient advocacy groups calling for nationwide legalization of medical cannabis at the state and federal levels.
Ragsdale says Gavin needs cannabis to treat his Doose syndrome epilepsy, a generalized form of epilepsy that causes a total of six different seizure types that occur in virtually all parts of his brain, because recommended pharmaceutical medications only made it worse.
One cannabis advocacy group called Bleeding Kansas Advocates (BKA) is fighting for patients like Gavin. Last legislative session, the group submitted a bill to the Legislature called the Kansas Safe Access Act (KSAA) with rural communities in mind that lays the groundwork for medical marijuana infrastructure in Kansas. The bill never got a hearing, but members of BKA are fighting for one during the 2018 session.
The bill covers everything from legal protections for patients and medical providers, patient identification cards, education centers, supply guidelines, cultivation guidelines, workforce education, public safety, revenue policies, packaging regulations, testing and lab requirements, waste disposal and more.
A spring 2015 Kansas Speaks Statewide Opinion Survey by the Docking Institute of Public Affairs at Fort Hays University indicated that more than two-thirds of respondents favored legalization of medical marijuana in Kansas.
Lisa Sublette, president and founder of BKA, says cannabis legalization is a 10th Amendment states’ rights issue. U.S. Attorney General Jeff Sessions recently reversed guidelines set forth in the Obama-era Cole Memo by rescinding it and instructing state attorney generals to enforce federal law, which classifies marijuana as a Schedule I drug — a higher schedule than cocaine — and renders it categorically illegal. That puts 29 states and the District of Columbia in a tricky situation because they all have legalized some form of medical cannabis.
Sublette noted that Congress has repeatedly voted not to fund any action by the Department of Justice against states.
“They will not change that,” she said. “They know what side their bread is buttered on. Cannabis got more votes in the last election than any candidate, including any of the two running for president.”
Members of Congress are already responding to Sessions’ directive. Reps. Barbara Lee, D-Calif., and Don Young, R-Ark., filed a resolution on Friday known as the RE.F.E.R Act that would prohibit the federal government from taking punitive action against people in states that have laws permitting the use of cannabis for medical or recreational use. More specifically, it would prevent the federal government from funding efforts to “detain, prosecute, sentence, or initiate civil proceedings against an individual, business or property that is involved in the cultivation, distribution, possession, dispensation, or the use of cannabis in accordance with the law or regulation of the state or unit of local government in which the individual is located.”
The climate in Kansas
Sessions’ recent actions have made Kansas lawmakers who might have been sympathetic to the legalization of medical marijuana a little more balky, if not reluctant to tackle the issue in the current political climate. Kansas’ House of Representatives passed a bill in 2015 that would have decreased penalties for marijuana possession, allowed limited production and sale of hemp oil, and permitted the study of industrial hemp. However, the Senate didn’t budge and the bill flopped.
In 2017, a Kansas Senate committee endorsed a measure that would have allowed doctors and physicians to prescribe “non-intoxicating” medications derived from cannabis. The bill initially was intended to legalize cannabis as a whole for medical conditions, but an amendment watered it down to allow prescription and dispensation of “non-intoxicating cannabinoid medicine” without clarifying if that would include medications with THC, which has psychoactive properties in larger doses.
Critics, such as those in BKA, argued that leaving out THC would not be enough because THC is a crucial component in the treatment of certain conditions. It passed through committee, but not through the Senate as a whole.
State Sen. John Doll, R-Garden City, voted for it during his tenure as a representative. Before learning of Sessions’ directive, Doll was more sympathetic to the possibility of voting for it again as a senator in the 2018 session.
“There is a lot of evidence that for a lot of things like Parkinson’s and those sort of things that it’s effective,” Doll said. “If we have an effective product and it gets them away from painkillers and things like that that are addictive, yes I’m for it. I would vote for medical marijuana if I liked the bill.”
Sublette said the KSAA is the only bill introduced in Kansas that has been reviewed by multiple third parties and that meets the guidelines of the Kansas Health Institute. But even with the work already done at the front end, the tone of enforcement at the federal level under Sessions stands to be a significant deterrent for state lawmakers.
“I think Attorney General Jeff Sessions made it very clear that it’s illegal, and states have passed it because of what President Obama did,” Doll said at a recent Legislative Coffee just before the start of the legislative session. As for medical marijuana, “It’s something we should look at,” he said.
State Rep. John Wheeler, R-Garden City, is wary that a medical cannabis bill might incite activists at the statehouse into a recreational marijuana frenzy. He said he hasn’t had a chance to review the KSAA, but noted that the 2017 hemp bill rendered the statehouse in Topeka “full of noisy people hollering for legalization of recreational marijuana.”
As to medical marijuana, Wheeler said, “I think there is some hope for the oils without the THC, but until I hear from all sides of this, I’m not going to declare a position on that. If it’s good for us, fine.”
For Rep. Russ Jennings, R-Lakin, the classification of marijuana as an illicit substance on the federal level will always cast his vote away from the prospect of legalization.
“I will not support the act as long as marijuana remains a scheduled, controlled substance on the Federal Registry of Controlled Substances,” he said. “I do not believe that it’s appropriate for states to overwhelm federal law with respect to controlled substances.”
He added that he would “love” for Congress to make a decision on whether to convey legitimacy to states that err on the side of legalization by removing marijuana from the list or “otherwise officially permitting states to exempt themselves from those provisions.”
Sublette, a GOP voter for 30 years, says Republicans stand to lose their base over the issue.
“I cannot even tell you the phone calls I get of people coming out of the woodwork and saying, ‘I’ve never been an activist before. I am getting active now,’” she said. “How dare they stand for my guns but not stand for my medical liberty. So it would behoove the Kansas GOP to take a very close look at if they want to be seen as cowards and hypocrites. They will leave the door open for the Democratic party to own this issue in the 2018 elections, and that’s what it comes down to.”
Sublette noted that other states without medical cannabis are moving forward in their deliberations. Oklahoma is putting the issue to ballot in June, Missouri is doing the same in November, and Arkansas is in the process of rolling out its medical infrastructure.
“We are surrounded. What do we want to be? The last ones standing?” Sublette said.
Debating the value of cannabis
According to BKA, there have been more than 20,000 published studies or reviews globally on cannabis. A report produced by BKA noted that reviews show cannabis and its compounds are “uniquely safe and effective” with no possibility of causing a fatal overdose, unlike opioid drugs, which are currently causing a national crisis.
“The thing that we’re constantly told is that we need to look at taking baby steps in Kansas,” Sublette said. “That is a disgusting remark to make to our patients. Baby steps will not save our babies. They just won’t. These children must have THC.”
Some experts who previously refuted the value of medical cannabis have changed their tune. Dr. Sanjay Gupta, a neurosurgeon and reporter, wrote an article published in a 2009 issue of TIME Magazine titled “Why I Would Vote No on Pot.” In 2013, he issued a public apology.
“We have been terribly and systematically misled for nearly 70 years in the United Sates, and I apologize for my own role in that,” he wrote. He noted that in 1970, Assistant Secretary of Health Dr. Roger O. Egeberg wrote a letter recommending marijuana’s classification as a Schedule I drug, as it has remained for almost 50 years.
Gupta reviewed the letter sent by Egeberg and found a particular excerpt “unsettling.”
“Since there is still a considerable void in our knowledge of the plant and effects of the active drug contained in it, our recommendation is that marijuana be retained within schedule I at least until the completion of certain studies now underway to resolve the issue,” Egeberg wrote.
In response, Gupta wrote, “Not because of sound science, but because of its absence, marijuana was classified as a Schedule I substance.”
Trying to find the right medicine
Ragsdale said she tried everything in Kansas to help her son. Doctors told her Gavin needed to take different types of layered pharmaceutical seizure medications to control the different kinds of seizures afflicting him. While one drug would stop one kind of seizure, it was likely to agitate the others.
“We listened to the experts,” Ragsdale said. “We tried a total of nine medications.”
But with alleviation of one seizure came a chorus of symptoms from the others. For example, when Gavin took Diastat, or diazepam — a benzodiazepine used to treat seizures, muscle spasms and anxiety — his grand mal seizures would stop, but then he would be thrown into prolonged periods of myoclonic jerks, an involuntary muscle contraction; drop attacks, also known as atonic seizures, which make a person’s muscles suddenly relax and cause them to fall; and absence seizures, which cause people to “blank out” or stare off into space.
To treat the seizures, Gavin was given a host of medications, including Valium and other benzodiazepines, that left him practically unable to function. Ragsdale said side effects for her son included hallucinations, fits of rage, crying spells, loss of coordination, loss of cognitive function, and a tendency to say “crazy” things like “I’m sorry I killed the baby” when he was just 3 and sharing a bedroom with his 1-year-old brother.
After virtually every medication proved to have some kind of adverse effect on her son, Ragsdale reached out to her father living in Texas for consolation. He ordered her hemp CBD oil to be delivered within 24 hours. While it wasn’t something sold in Kansas because it technically remains illegal on the state level, imported, low-THC industrial hemp products are legal on the federal level as long they’re made from the seed and stalk, not the leaves and flower.
The results were immediate.
Ragsdale said they started Gavin out on five drops a day.
“Within an hour of the first dose, he started talking,” she said. “Within two days, he was walking with balance unassisted. Within three days, he was running around and playing with his brothers — singing, dancing and being a kid again.”
Two weeks later, they went to Children’s Mercy Hospital in Kansas City for a follow-up appointment. As soon as Ragsdale told doctors she was using CBD oil to treat her son, “it took a really wrong turn,” she said.
“Our neurologist told us that what we were using was illegal, which was not the case,” Ragsdale said.
They had an ultimatum: either stop using the medicine that was working and continue conventional treatment, or keep using it and be dismissed as a patient. Ragsdale chose the latter. After she recruited a doctor in Missouri to wean Gavin off the pharmaceuticals and continued treating him with CBD oil, he was temporarily seizure-free for five and a half months. The CBD she was using, she said, had less than .01 percent THC.
Ragsdale and her husband were “shouting to the world” that they had had success. They enrolled Gavin in kindergarten, “which we didn’t think was going to be possible.” But within a few months, Gavin had another drop seizure. Ragsdale decided to raise his CBD dose.
“Instead of seeing a reduction in seizures, they multiplied rather quickly,” she said. “We were having absence, drops, myoclonic all over again, but no prolonged or grand mal seizures.”
After reaching out to patient advocacy groups, she found that CBD oils are similar to pharmaceuticals in at least one way: CBD prevented a few of Gavin’s seizure types, but high amounts actually agitated others, and drop seizures were too dangerous to let linger.
Ragsdale says Gavin has lost teeth, broken his nose, “busted” his eye sockets, split open his chin and bit into his tongue as a result of his drop seizures. While they were living in Kansas, Gavin had as many as 50 drop seizures a day. As a result, the Ragsdale family ate meals on the floor so that Gavin didn’t have to wear his helmet, which prevented him from hurting himself when his head smashed into the table.
Settling in Colorado
Since their move to Colorado, Gavin has had only three drop seizures in six weeks and doesn’t have to wear his helmet nearly as often. She added that he has to go a full year without any drop seizures before he can stop wearing his helmet.
Before their move, Ragsdale stopped giving Gavin CBD and took him to see a neurologist at University of Kansas Hospital. The neurologist agreed that Gavin’s seizures had been aggravated by pharmaceuticals and cautioned Ragsdale against trying more on him.
Ragsdale started studying the endocannabinoid system of the human body, finding that epilepsy patients all over the country were using cannabinoids to treat their condition in different ways with different cannabinoid compounds: THCA, CBD, CBG, CBC. For that reason, she said, she’s against the kind of CBD-only legislation that the Kansas Legislature seems most willing to consider.
As for relocating to Colorado, at the time it seemed untenable. Ragsdale’s husband has a rare lung disease, and the altitude could adversely affect his condition. Simultaneously, the son he had by his first wife was getting older and had a life settled in Kansas. The cost of living in Colorado didn’t help. With the marijuana boom, rent and housing prices have gone up significantly. For a family of six living below the federal poverty level, it was a no-go.
But Ragsdale knew that if her son’s condition deteriorated, sacrifices would have to be made. Eventually, his condition got worse.
“He was doing really well at the beginning of the year,” she said. “We had some weeks that he would have 100-plus seizures just at school. If he only had 20 seizures at school in a day, that was something to celebrate, which sounds ridiculous.”
Toward the beginning of November, Gavin’s seizure activity spiked. In the second week of November, he had the first grand mal seizure he had had in three and a half years. It was a nocturnal grand mal seizure, which can be deadly. Ragsdale took him back to Children’s Mercy Hospital because it was an emergency, and they prescribed him the last drug on the list: Zonisamide.
Within 48 hours, she said, Gavin became “psychotic,” was saying “crazy things,” and could “barely walk.”
“His speech was slurred to the point you could barely understand him,” Ragsdale said.
The neurologist told her he was on too low of a dose for him to be affected that way. Ragsdale had had enough. She went online and started researching the drug. It was intended mostly for adults. She decided to stop using it. His condition only worsened.
“He could barely talk,” Ragsdale said. “Just a seizing shell of a child.”
Three days before Thanksgiving, Ragsdale got up in the middle of the night to go to the bathroom and saw Gavin having another nocturnal grand mal seizure. She had seen him have thousands of seizures over the years, but “nothing as terrifying as watching your kid having a nocturnal grand mal seizure. It’s devastating.”
The seizures persisted for hours the next morning. The hospital couldn’t do anything for him. So Ragsdale got on a train to California, where a contact from her advocacy network had offered to let her and Gavin stay with access to cannabis. When the lights on the train agitated Gavin’s seizures, she got off early in Colorado.
The founder of American Medical Refugees got in contact with her and secured her a room. She was provided with a nasal rescue spray called Cannatol used to treat seizures. The spray has a high THC content and is intended to stop prolonged or grand mal seizures.
When they ventured into a pub for a meal on Thanksgiving day, Ragsdale said, Gavin had a seizure right there on the floor. She used the spray on him, and his seizure stopped immediately.
“The whole crowd was standing there in absolute disbelief,” she said. “Within 10 minutes, Gavin came back around, sat up and was ready for pumpkin pie. He was not high. He didn’t have any issues with balance or coordination or verbal skills. It was an amazing thing.”
Eventually Ragsdale linked up with the Sullivan family from Shawnee. They had moved from Kansas to Colorado in 2015 with their 2-year-old son, who had been diagnosed with a catastrophic form of epilepsy. The Sullivans didn’t want to subject their baby to the drugs used to treat the illness in states without medical cannabis, so they left Kansas. When Ragsdale and Gavin joined them in their home in Colorado Springs, they shared their medicine with Gavin, starting him on THCA, a non-spychoactive form of acidic THC. The dose they gave him was .05 ml. Within a few days, Gavin was seizure-free.
“Nothing short of a miracle,” Ragsdale said. “He started reading again at a pace that we’ve never seen, and that defies all statistics for where he was at. Doing math at a pace that was unbelievable. Spending hours outside playing baseball, playing football, running around, going to the park, being a normal kid. It was absolutely amazing.”
Gavin is now a legal cannabis patient in Colorado. But while he continues to improve, Ragsdale says they miss their family in Kansas.
“I miss my family. I miss my brother. I miss my sister. I miss the familiar atmosphere. But more than anything, I miss my babies,” she said in tears. “My 6-year-old and my 10-year-old are devastated… When they come to Colorado, they see their brother thriving… To explain to them that something that is helping save their brother’s life and giving him a quality and a normalcy of life is illegal and that the state would take them and their dad and I would go to jail, that’s a very hard thing to wrap your head around. It’s hard to wrap your head around as an adult.”
In the end, Ragsdale said CBD-only legislation in Kansas is not enough, and her son proves it. She hopes the Legislature gives the KSAA a hearing, because for Gavin, it’s his only chance to come home.
“Kansas has one of the most comprehensive medical cannabis bills in the country, and that’s the Kansas Safe Access Act,” Ragsdale said. “The only thing that’s going to happen from passing CBD-only legislation is it’s going to make it five or 10 years before patients like Gavin get access and patients like Gavin can come home to their families.”