Living life

Twelve-year-old K.C. Linton of Larchwood suffers from Lennox-Gastaut syndrome, a form of epilepsy. After starting the use of cannabidiol, his number of seizures have dropped dramatically, according to his mother, Courtney. Photo by Josh Harrell

LARCHWOOD—There are benefits to cannabis.

The Linton family of rural Larchwood has been well aware of that fact since 2013.

Kenneth and Courtney’s son K.C. has suffered from a rare form of epilepsy called Lennox-Gastaut syndrome since he was a young child.

Several prescribed medications failed to give him any relief and carried frightening side effects.

Now, at the age of 12, he finally is able to walk and talk, play with his younger brother and attend West Lyon Middle School, thanks to a derivative of marijuana known as cannabidiol, also called CBD.

“We exhausted all available prescriptions,” Courtney said. “The medication was awful. He was on varieties not approved for kids. We had to sign consent forms because they were life-threatening.”

Indeed, K.C. stopped breathing on more than one occasion while on the prescribed medications.

His mother, who is a physician’s assistant in orthopedic medicine at Sanford Health in Sioux Falls, SD, began researching CBD and found the potential benefits outweighed the risks, and so he became one of the first CBD card carriers in Iowa after the Legislature approved the use of CBD oil for epilepsy patients in 2014. The road to that point was not without risks.

“Someone mentioned to DHS [Department of Human Services] that our son was being given marijuana. We were investigated prior to even starting,” Courtney said. “That was a fearful process.”

The Lintons kept custody of their son, and K.C. got an approved card allowing him to use CBD. Even afterward, out of fear of losing their son, they kept silent about the controversial treatment but proceeded with the plan.

“When you are in a situation that you have run out of options, your need to keep your child alive overpowers that fear,” Courtney said.

Kenneth established residency in Colorado so they could buy CBD legally. The whole family lived there for a couple months to determine whether or not CBD would be beneficial to K.C.

While there, K.C. participated in several studies on the effects of CBD on patients with epilepsy.

Legal questions

Soon, Iowa called them back, but Kenneth maintained residency in the Rocky Mountain state, and trips to Colorado were made every two months. However, crossing state lines was a federal offense, even though the use of CBD was legalized in Iowa.

“We were unclear of the legalities involved,” Courtney said. “We decided to put the safety of our family first and be quiet about it to make sure he could continue.”

She said she is confident the right choice was made in K.C.’s care because they could see a difference within two weeks. Also diagnosed with autism, K.C.’s symptoms lessened.

“He had better eye contact and we were able to converse,” Courtney said. “His focus widened and he developed an interest in so many things. The world opened for him. There were moments of awe where we were awestruck by the things he would say and the things he would notice. He really blossomed.”

There were challenges that had to be met. Since the school received federal funding, the Lintons made sure the CBD was not administered there in the beginning, because mandatory reporters would get in­­volved.

However, now the school district and local law enforcement are aware of K.C.’s situation, and the treatment has become more accepted in the small community. Courtney said the fear of authorities breaking down their front door has lessened and their comfort level has increased.

She said teachers and ad­­ministrators at the school took notice of the gains K.C. was making, and he was being challenged in ways he was not before. K.C. also became part of the school, where he will be a seventh-grader in the fall.

“He has been embraced by his class and he is loved,” Courtney said.

Going public

The number of benefits that the Lintons have experienced has caused them to end their silence, and after then-Gov. Terry Branstad signed House File 524 in May, which expanded the use of CBD within the state, Courtney began to speak out. She said continued silence would have been a disservice to her son and to other people who could benefit from CBD.

She said the law, which allows the manufacture and sale of CBD within state lines is a start, but it is not enough. According to her, each person is genetically different so each person has a unique reaction to different ratios of CBD and tetrahydrocannabinol — THC.

HF 524 only allows CBD oils with a THC level of three percent or less. THC is the psychoactive aspect of cannabis. K.C.’s oil contains less than 3 percent of THC and he does not need a greater level, but Courtney said the levels need to be determined by doctors, not legislators.

She said 3 percent of THC is a low amount, and some patients might have to consume a quantity larger than they can tolerate in order to get relief from their symptoms.

Not only is Courtney trying to tell K.C.’s story, she wants to reach out to families who might be in similar situations. Considering CBD as a treatment is accompanied by a great amount of fear, and it is something with which she is very familiar. Yes, there are risks and side effects, such as drowsiness, but the mother wants to keep the door of communication open.

“I feel I have a moral obligation to speak out,” Courtney said. “I have yet to meet someone who has heard out story and remains opposed to the treatment.

“There is so much promise to this, but so many misconceptions that lead to fear,” she said. “I feel using cannabis is one of the best choices I have made and we are living a quality of life we did not imagine.

“I think the development of cannabis as a medication is inevitable as the research goes forward, and the public needs to be educated. With supervised medical direction, cannabis can be used safely and therapeutically.”