CHAPTER 4

FREEDOM TO BE HEALTHY

C. J. Harris, a Georgia-based high school football player who takes CBD to prevent his pediatric epileptic seizures, was ruled ineligible to play at the college level by the National Collegiate Athletic Association (NCAA) in 2018.1

Although Harris has a legal prescription for CBD in his home state and would have the same support at Auburn University, where he was offered a scholarship, the athletic association believed that he should not be able to play because CBD is a banned substance. They argued that he was breaking the law and therefore did not meet their standards for ethics. While coaches, doctors, college administrators and even state representatives stand behind Harris, there is an inherent fear of cannabis that is preventing his success as a professional player.

“I saw everything lining up perfectly for me,” Harris told a reporter working on his story. Harris was getting better on his CBD medicine and getting ahead in life through his exceptional football skills, but then with the ruling, everything fell apart.

His father, Curtis Harris, feels the same way. His son has been experiencing seizures since the third grade almost ten years ago but has not had a single seizure since he began taking CBD in January 2017. Curtis Harris knows that his son needs CBD for what he considers to be a disability. He has reached out to Allen Peake, his state representative, as well as the Epilepsy Foundation, a nonprofit advocacy group, to try to help his son receive the support that he needs to achieve his goals. Not only his career as a football player but also his college education rely on this decision.

“We urge the NCAA to review their existing guidelines and explore possible exceptions to allow players under medical treatment, like C.J., the ability to fulfill their dreams of playing college football,” Phil Gattone, president and CEO of the Epilepsy Foundation, said in response to the NCAA’s actions against the student. “We hope the NCAA would reconsider their decision and assess C.J. on his character and talent as a football player.”

Fast, effective and feared

Epilepsy treatment is one of the core stories that has emerged from research into CBD, and the results are stunning and easy to understand.

Leonard Leinow is a CBD specialist who has written a book on medical dosages for specific diseases. He’s worked with hundreds of patients who, like Harris, have gone years without solutions to their health problems and need practical answers. If you’ve ever seen a young child have a seizure, you know how devastating it is to both the child and their parents.

“You could have somebody who’s having an epileptic seizure and their whole body, their muscles are convulsing. And you squirt some CBD in their mouth and they just stop,” Leinow says.

It’s that fast and that effective?

“When we talk about seizures, let’s say someone has four seizures a day and the intensity is high, and the duration is long. When they take CBD, now instead of having four a day, they’re having, you know, one a week. And it only lasts two minutes instead of ten minutes. It’s a high percentage of people who are helped, as well. I’m talking about seventy-five, eighty percent of the people are getting a significant benefit, and ten to twenty percent of the people are able to get rid of seizures altogether,” Leinow explains.

CBD isn’t just stopping their seizures: it’s providing these children with a lifeline. When children have pediatric epilepsy, their brains, and therefore all of their neurological functions, are permanently affected by seizures: the more they have, the more brain damage they will sustain.

So when Jason David’s son, Jayden, was diagnosed with an extreme form of epilepsy called Dravet syndrome, he assumed that it was a death sentence. Dravet syndrome affects children in a profound way. In addition to seizures, frequent and intensive fevers threaten their lives. Children do not get better from this illness and require constant caretaking. The seizures slowly destroy these children’s bodies and their ability to heal, grow and thrive.

The prescriptions he had for Jayden didn’t work. Out of desperation, David started doing his own research to help his son. He had heard about cannabis-based solutions but he couldn’t get support from his doctor, who was afraid about the potential impact on his practice. David lobbied for political support, and he felt as if he had no one on his side while he watched Jayden succumb to his disease.

“No one wanted to hear about me and my son when he was sick, so sick,” he says. “You need to get someone that cares. Someone who cares about people, who cares about medicine. Not someone making money off medication. Someone worried about lives. Politicians don’t give a fuck about lives.”

Someone who did care was Andrew DeAngelo, who runs Harborside with his brother Steve. In 2011, a mutual friend connected DeAngelo and David.

“He showed me videos on his phone of his child having seizures,” DeAngelo says. “This was a little child, and even smaller than most five-year-olds because the epilepsy had stunted his growth. You see a child like that have a grand mal seizure and you are moved. You have no choice but to feel empathy for that child to the point where it breaks your heart. Jason was clearly at the end of his rope. He told me that he was very depressed. He was borderline suicidal. He didn’t know what he was going to do.”

Under everyone’s radar, with the DeAngelos’ help, David began to experiment, eventually using a high-CBD strain of cannabis now known to many parents of children with epilepsy called Charlotte’s Web, named after the epileptic child Charlotte Figi, who was having 300 grand mal seizures a week. But DeAngelo was worried.

“It was a little scary for me and for Harborside and for our community because we’d never given cannabis to a child that young. This was 2011, and you know the feds were still raiding dispensaries and farms, and I was certainly afraid that if I was going to be the dispensary to give cannabis to a child that young, I was worried I was going to get busted. Or even worse, Jason would get busted and his child would be taken away from him. When you meet Jason and you hear his story, however, you have no choice . . . but to help him. I felt a moral obligation despite the risks. But I met Jayden personally, and we went through the process of making sure that Jayden had a doctor’s note and a caregiver recommendation from a reputable doctor.”

Medical refugees and CBD

As journalist Ricardo Baca explains, when medical cannabis began to be permitted in places such as California and later Colorado, hundreds of families whose children had epilepsy were moving to these states as medical refugees. Although CBD does not help every child or adult with epilepsy, some children are what Baca calls super-responders. When any seizure could kill a child, and many can result in permanent brain damage, it’s important to look at how we can make a difference as fast as possible.

It’s also important to help parents. Caregiver burnout is a substantive problem for those who are taking care of children with often fatal diseases, and parents like David often reach a state of psychological paralysis because they don’t know where to turn.

“When you have a child with severe epilepsy your life literally revolves around every single breath that that child takes and just feeding a child with epilepsy, just feeding them can be an enormous challenge,” DeAngelo explains.

DeAngelo’s plan worked quickly, however. With an oil tincture made up of a 20:1 CBD to THC ratio, Jayden’s symptoms immediately subsided.

“After four and half years of twitching and having grand mals, it was the first day he went seizure-free,” David says. “For the first four days that I gave it to him, Jayden didn’t have a seizure and I remember calling my mom and screaming and crying at the top of my lungs, ‘Jayden didn’t have a seizure today!’”

Even so, David was worried, and he wanted to make sure that the CBD therapy would stand the test of time and different environments. His vigilance toward his son’s condition was honed over years of being exposed to a range of triggers that can make his epilepsy worse.

“Jayden’s had over three hundred grand mal seizures in the bathtub. Families with epilepsy kids understand that sudden temperature changes can cause seizures. So, it was about one hundred degrees, in June, and I put Jayden in a little swimming pool in front of my house. It was cold water. He sat there and played in the pool for about an hour. Not in a million years would I ever have thought that would happen. I remember my neighbors all coming out. They were crying and clapping. They used to see Jayden in ambulances and this was the first time they were seeing Jayden outside really being a child. It was really a monumental moment in our lives.”

Janie Maedler’s daughter Rylie had a form of bone cancer that resulted in extreme seizures as well, but she was facing a possible early death because of a disease that was threatening her on several fronts at the same time.

Before her daughter was diagnosed, Maedler says, “We started noticing that Rylie’s teeth were getting very loose, and we were out to lunch one day and she started swallowing her teeth. All of her teeth look like a picket fence that somebody would run a truck through. And at the same time, I started noticing that whenever I would look at Rylie’s face, something was just off about it and I was asking my husband, and asking their grandmother, and asking friends and family, ‘Do you see what I’m seeing?’”

Maedler took Rylie to a number of different doctors, none of whom could explain what was going on. She decided to follow her gut instinct and demand an MRI and a CT scan.

“I think I was just in denial of what was going to happen,” Maedler says. “And so, we’re just sitting there in the hospital, and I’m joking around with the kids, and the doctor walks in and flips on the computer screen, and a CT scan shows what looks like somebody who had been shot in the face with a cannon, and like a whole chunk of bone was missing. Have you ever seen the old movie The Blob? That’s all I could think of, that something was eating away or had blown away this person’s face. And I was thinking, Gosh, that’s kind of like wrong of him to flip on the computer screen and show me somebody else’s scan. And at that point, I kind of started going numb. And my husband was taking care of Rylie and keeping her cheerful, goofing off and playing with her. And the doctor hadn’t even told me at that point, because he hadn’t even understood what was happening, that it was actually cancer.”

Rylie had been diagnosed with aggressive giant cell granuloma, which is a rare form of bone cancer that can destroy a child from the inside out, as it breaks down the cells that form bone. After surgery to remove one of the main tumors infecting her skull and to restructure her face, Rylie was put on daily injections of a cocktail of pharmaceuticals to ensure that her cancer would not continue to eat away at her tiny body, as there were tumors that they could not remove, but the medications themselves caused her pain.

“That’s it,” Maedler says she said to her husband at the time. “We’re not doing that anymore. We’re not going to pile on more medications to treat the symptoms of the last medications.”

Rylie’s condition was so rare and so challenging to treat that Maedler felt alone. But, like David, Maedler was willing to do whatever it took to help her child live a full and amazing life.

“All the studies showed that whenever there is a piece of the cancer left behind you might as well plan your next surgery,” Maedler explains. “They’re telling us that she’s going to be pretty much deformed. Like, they’re going to remove a quarter of her face or more. She’s going to lose her teeth. She’s going to have nerve damage, and this is probably not going to be her only surgery. And who knows what the pain level is going to be and all of that. That was what we had heard from Johns Hopkins and everyone. Otherwise it is just going to come back like crazy. The tumor is so aggressive and it grows back from virtually nothing.”

Maedler took it upon herself to explore all of the research she could. She learned that Rylie’s type of cancer can be radically improved through the use of CBD, but Maedler ran into roadblocks similar to David’s in getting access to this medicine. She found pre-clinical trials that were combining CBD with chemotherapy in order to treat this type of bone tumor. She began petitioning Rylie’s doctors to help her find a CBD medication that would help, but she realized that she had to get the information herself. “The one thing that kept popping up very strongly was using cannabis. It wasn’t smoking cannabis; it was cannabis oil. I found a safe source through the different moms I met in the hospital, and it was lab-tested.”

Maedler wasn’t convinced she was on the right path, though, because she is not a medical professional. But she felt like it was the only thing she could do to help her daughter have a chance of survival.

“I had a lot of people in our family that I knew were going to doubt why I was giving this to her. And even I wasn’t sure if I was doing the right thing. Even giving her that first dose, I was scared to death. You doubt yourself as a parent, that you’re making the best choices for your child. And so, I thought to myself, if I can get a baseline of one month after she’s had surgery and give her the CBD, and then she’s supposed to have a follow-up MRI, if I don’t see the improvement that I expect to see, then we could just stop doing it. Hopefully, it wouldn’t have caused any harm.”

Even before the MRI, doctors remarked about Rylie’s facial inflammation. They noticed very quickly that her teeth were getting firmer because her teeth roots were regenerating. Even better, the doctors found that the bones in her face were regenerating. When the MRI took place, they found that that tumor that was left behind had shrunk by 30 percent.

Maedler did not get Rylie to this point easily. Like Jason David, she had to fight for her child’s right to use a medicine that had been proven to work for others. What she found was discouraging and, in fact, not what she expected. “In our state, they passed a law in 2011 that made medical cannabis legal for adults, but they forgot about the children,” Maedler says. “It was illegal for children in Delaware at the time that all of this was happening.”

The Maedler family lived in which she calls an A.I. duPont state, referring to the large health maintenance organization (HMO) and hospital system that controls their medical care. The company has a monopoly over policies and what doctors are allowed to prescribe, and they don’t like cannabis.

Maedler says, “The largest medical research hospital put their foot down and said we are against this—and if you [use CBD], we’ll keep you out of the hospital. There are a ton of parents giving the oil to their kids illegally. It’s been hard, with all the recreational cannabis marches, to get them to change. In their minds, it’s all marijuana. It is so hard to get them to even talk to you because it’s all lumped into the same group.”

Maedler didn’t take no for an answer. Instead, she moved her family to South Carolina so that she could access CBD, simultaneously working toward Rylie’s Law in her home state of Delaware so that other parents wouldn’t have to face the same challenges.

“One of the things I meet with legislators and with A.I. duPont about is the need to have control taken out of their hands. Children’s own pediatricians should be able to recommend CBD,” she argues. “A.I. duPont has so much power that once this doctor said that no one in the state would touch Rylie; we had to work our way to finding another neurologist, one not working with A.I. duPont.”

But Maedler also worries about the way that CBD is perceived within the medical community. As she explains, even when she moved to South Carolina and got the access Rylie needed, she had to continue to rely on her own amateur research, especially since her husband works in public service and they needed intense secrecy to feel safe as a family.

“Rylie’s neurologist in South Carolina, he’s the only pediatric neurologist, and all the kids here, the kids with cancer who have a medical cannabis card, go to him,” Maedler says. “He actually believes that it works, sees that it works. But he’s not educated. As long as you can get it and you know what you are doing, he says, ‘Good luck.’ We are in a unique situation; we have medical cannabis here but there is no training at all.”

This neurologist’s lack of CBD-specific training prevents him from fully participating in Rylie’s care. In fact, her doctors continue to be amazed, rather than curious, as to how they can use plant medicines to help their patients. These stories help us understand just what kind of challenge we’re facing in the United States.

At Johns Hopkins, Maedler explains, after a year of treatment on CBD, Rylie’s case was reviewed by an oncologist.

“He said, ‘And these are her records?’ And I said, ‘Yeah, these are her records.’ And he said, ‘Are you sure?’ And I looked at him and I said, ‘Yeah, that’s hers.’ And then he said, ‘Well, what are you doing?’ and I said, ‘Oh, you know, we’re using essential oils, eating healthier.’ And he just kind of smiled and smirked at me and he said, ‘Well, whatever you’re doing, you better keep it up because I cannot tell that that child is this child on the records, because she shouldn’t look like this.’”

Today, Rylie is a happy and healthy child, and cancer-free.

“Today, she looks beautiful and she hasn’t had a single reconstructive surgery,” Maedler says. “She’s on absolutely no medications, only CBD. She didn’t have chemotherapy. She wasn’t on any medications besides the CBD oil.”

1. [CNN Wire. (2018). Epileptic HS football player ineligible for college play because
of cannabis oil use. Retrieved from http://fox4kc.com/2018/05/25/epileptic-hsfootball-player-ineligible-for-college-play-because-of-cannabis-oil-use/]