New Mississippi law could lead to experimental marijuana cannabis oil treatment for children plagued with seizure disorders
By LaReeca Rucker
It has been three years since Taylor Goode has spoken to his mother — three years since she’s heard the sound of his voice. And sometimes she cannot bear to look at photos of her children when they were young and thriving. “I usually get upset, so I don’t get them out a lot,” she said. “I miss it and want it back for them so bad.”
But Jennifer Potts is thankful that both of her boys are still alive and with her. “I know things can get worse,” she said. “These two kids have every right to be whiny, complaining and ill, but they are never down. So I try to stay positive and in a good mood, because they are. It is what it is, and there is nothing we can do about it. I just try to take it day by day the best I can. I have my days though. I have days when I cry sometimes all day long. But for the most part, it’s our new normal. I’ve almost lost both of them, and they are still here. I’m just thankful for that.”
Potts attended Potts Camp High School, but left school when she was 16. She married and gave birth to three sons — Tyler, Taylor and Tucker, who are now 15, 13 and 9, respectively, shortly afterward. While pregnant with her last child, Potts became a certified nursing assistant. Her first job was at Graceland Care Center, a nursing home, in Oxford. Then she became a CNA and a rehabilitation technician at an assisted living facility in Holly Springs.
In the mornings before going to work, Potts got her three sons ready for school and daycare. Taylor lived life “wide open.” He could outrun any of the neighborhood kids and turn flips on the trampoline. But everything changed when he became 5.
The T-ball Game
Taylor Goode, 5, swung a bat and knocked the T-ball off the stand. He ran to first base, but never made it. As he approached the bag, he began to limp severely. Later diagnosed as Legg-Calve-Perthes, doctors told his mother that Taylor had a rare hip disease that afflicts 1 in 1,200 children, mostly boys, in which the hip ball deteriorates and often grows back deformed, causing pain in the knees, groin or hips. Taylors’s knees always hurt. It was the first sign something might be wrong.
About a year later, Taylor attended his cousin’s birthday party complete with an inflatable water slide. While the children played, Taylor began mildly twitching. At home that afternoon, he followed his older brother, Tyler, outside to play.
“He fell down the back steps and started twitching again,” said Potts, who thought the twitching must be related to his hip. She rushed Taylor to LeBonheur Children’s Hospital in Memphis, where he had a full blown seizure in the emergency room and experienced his first lengthy hospital stay in an induced coma.
Taylor was sent home after 21 days with prescriptions for three types of medication, and lived another year seizure-free. Physical therapy made him stronger, and he regained the ability to walk. Then the seizures returned and progressed.
Today, he lives unconsciously in a hospital bed in the living room of his mother’s Potts Camp home attached to IVs, a feeding tube and a ventilator. He sleeps most of the time because he is on maximum doses of four seizure medications and constantly experiences seizure activity. Some medications help sedate him. Doctors have told Potts there is nothing more they can do, and they don’t believe he will improve.
“They tell me they don’t ever see him getting any better,” she said. “They said this is pretty much it.”
The ventilator will never be removed unless doctors can lower the doses of his seizure medications, something currently impossible, and Taylor cannot move his arms or legs. The family has been home a year since his last hospitalization. He receives two shots of Lovenox a day in his stomach. Without Medicaid, the medication costs more than $1,000 a vial, and he needs three a month. Two of his seizure medications taken twice a month are more than $14,000.
Taylor is not Potts’ only child with epilepsy. Things also began to change for Tucker Goode when he was 5. The boy, three years younger than Taylor, began having seizures that were similarly spaced – about one every year.
Tucker, now 9, is on five seizure medications five times a day. He has a feeding tube and can’t walk – quite different from the memories Jennifer has of him energetically riding his tricycle through the house. But his wheelchair enables him to be mobile, and he is a student at Mary Reid Elementary School with a teacher specifically assigned to him.
Because doctors have told Potts there is nothing more they can do for Taylor, and it’s uncertain how or if Tucker’s seizures will progress, Potts is interested in alternative medicine, specifically cannabis oil extracted from marijuana, to experimentally treat the seizures Taylor endures.
She first learned about the possibility after reading a story about a little girl named Charlotte Figi, who experienced fewer seizures caused by Dravet syndrome – a type of seizure disorder triggered by high temperature or fever — after her first dose of cannabis oil at age 5. Potts contacted a doctor in Mississippi, who told her they are not yet dispensing the oil in Mississippi, but that may soon change because of a state law passed this year specifically for this reason.
“I don’t do drugs,” Potts said. “But I really wish they would make the medical marijuana legal that’s helping all the kids around here. There are kids who I have read about who are pretty much like them, but with a lot of therapy, they are back in school. They are feeding themselves. They are talking. They are saying there is pretty much no more hope for Taylor. It wouldn’t hurt to try something that might give them a quality of life.”
Mississippi has already taken the first step in allowing cannabis oil to be used for medicinal purposes when treating seizures. Sen. Josh Harkins, of Flowood, was instrumental in crafting a bill that became Harper Grace’s Law this spring. It is named after Harper Grace Druval, a 2-year-old Mississippi girl who also suffers from Dravet syndrome, and exempts a specialized cannabis preparation from the state’s Controlled Substance Law.
Unlike “medical marijuana” that is legal in some states, the oil is extracted from cannabis and taken orally, not smoked. It also contains a very low amount of tetrahydrocannabinol, or THC, the principal psychoactive element of the cannabis plant, and a high amount of cannabidiol, or CBD, a non-psychoactive element that may have anti-seizure activity, according to the University of Mississippi website.
Harkins said he became interested in working to get the legislation passed after speaking with a high school friend who knew Harper Grace. At first, he thought his friend was asking him to get marijuana legalized until he realized she was talking about cannabis oil that has been used to treat seizures. After watching a video about a little girl in Colorado who had up to 200 seizures a week before orally taking cannabis oil, Harkins was convinced it was important legislation to pursue.
“She was on narcotics and in a vegetative state,” he said. “She couldn’t walk, talk or eat on her own. Her mom said there was nothing else you could do but have a surgery where they split your brain in half.”
The first time the girl was given cannabis oil, she went seven days without having a seizure, Harkins said. After a few months, she was off her feeding tube and has had great success. She still has developmental issues, but the number of seizures she had was dramatically reduced.
“I have two kids, and I would be banging on every door for someone to do something,” Harkins said. “I thought it was the right thing to do.”
In order for Gov. Phil Bryant to feel comfortable about the proposed legislation and calm citizens who might gasp at the false idea that “marijuana” was being legalized, Harkins teamed up with the National Center for Natural Products Research Center at the University of Mississippi.
“They have been studying marijuana for three decades, and are one of the best experts on cannabis we have,” he said. “We are going to let the Natural Products Research Center grow it, harvest it and process it into oil, and the University of Mississippi Medical Center will dispense it.”
After the bill passed, Ole Miss was concerned that they might be breaking laws and risk losing funding, so they applied for permits from the Drug Enforcement Administration and the National Institute on Drug Abuse, Harkins said.
“Now, they can grow and harvest it,” Harkins said. “The plants are growing right now. They will be able to harvest them later on this year and process it. We can hopefully harvest them by the end of the year and start the process of processing it into oil. Then, we’re going to be waiting on the Federal Drug Administration to allow UMMC and the pediatric epileptologist to dispense it.”
Harkins said the treatment will be geared toward people who are in desperate need of help. “I think the intent is for people who are in really bad shape – a method of last resort and compassionate use,” he said. “We don’t want to give anybody anything that’s going to harm them in the long run where they are better off without it, and they can take some other medication. But if people have exhausted all means, that’s a decision that should be open to that family.”
Marijuana is not the only illegal drug that has been used for medicinal purposes, Harkins said. “We use heroin. We use cocaine. We use opiants,” he said. “We use all forms of drugs for medicinal uses. What is so different about cannabis that it can’t be used, especially when it doesn’t even offer a high – when we have medicine that doesn’t even offer people a chance to abuse it.
“This is something that people can take a look at and rationally set aside all the hysteria over whether marijuana should be legalized. This is a product that is not going to be of value to abuse it. If it does something to the brain, why not study it and see what other things it might have an effect on – whether it’s Parkinson’s or any other neurological disorders.”
Harkins said without the University of Mississippi, it would have been difficult to get the bill passed. He said university officials wrote a letter of support for it.
“I have a 7- and a 9-year-old,” he said. “If you watch that video of the child seizing, there is nothing more gut-wrenching to see the helplessness of it. I didn’t care what the blow-back would have been. And I really didn’t think there was going to be that much of a blow-back. We are a compassionate state, and we are the most charitable state because we care about people. I truly felt in my heart, this would not be an issue that would not be divisive and cause problems.”
Allen St. Pierre, executive director of the Washington-based NORML Foundation, the National Organization for the Reform of Marijuana Laws, said NORML is the oldest and largest cannabis law reform organization in the world with more than 160 chapters, 600 lawyers and a full-time presence in Washington lobbying and litigating in favor of ending cannabis prohibition.
“Mississippi is one of 13 states since the first of the year that have passed so-called ‘CDB-only’ legislation,” St. Pierre said. “In 23 states and the District of Columbia, qualified medical patients have legal protection from prosecution and/or can purchase medical cannabis from state-authorized stores. Mississippi’s new law does not actually allow patients to use whole smoked cannabis, and there are no legal resources yet to obtain the CBD-rich cannabis oil.”
Dr. Mahmoud ElSohly, a research professor in the Research Institute of Pharmaceutical Sciences and director of the marijuana project, works at the University of Mississippi’s Natural Products Research Center. He said the Mississippi Legislature passed legislation in April of 2014 approving the UMMC to dispense cannabidiol oil (CBD) for the treatment of epileptic seizures in children. However, major regulatory requirements still exist before patients can receive the potential treatment in a carefully controlled clinical trial.
The center will have to secure federal regulatory approval to grow the kind of marijuana from which the oil is extracted, process and transport it. FDA approval for the manufacturing and clinical plan will require an investigated new drug approval. And doctors must initiate the clinical trial, with all requisite safeguards, to enroll candidate children and test the oil’s efficacy and safety.
“Faculty and staff members at both the University of Mississippi and the medical center are moving forward on those three tracks simultaneously,” ElSohly said. “For example, the National Center for Natural Products Research at the UM School of Pharmacy has recently gained approval from two federal agencies to grow a certain quota of the particular strain for researchers around the country. However, many requirements remain ahead, and meeting them could take a year or more.”
ElSohly said the plant cannabis oil can be produced from does not contain a high percentage of THC, or tetrahydrocannabinol. THC is the psychoactive component that gives people a high. Instead, it is high in CBD, or cannabidiol, which does not make people high.
ElSohly said marijuana has potential medicinal elements if developed in accordance with FDA requirements. “I don’t believe that smoked marijuana is good for Mississippians or any U.S. citizen,” he said. “It is important to note that drugs are developed and approved based on chemical, pharmacological, safety and efficacy data with both preclinical and clinical studies and not by popular vote.”
ElSohly said anecdotal evidence suggests CBD oil may be effective for intractable epilepsy in children. However, rigorous and formal research studies in humans need to be conducted to establish the oil’s effectiveness and safety.
“Any such clinical trial established at UMMC would initially involve children with refractory or more serious types of epilepsy,” he said. “There are no current plans to study the effectiveness of CBD oil or smoked marijuana on seizure activity in adults. Nor do neurologists at UMMC feel that smoked marijuana – whether medical or recreational – currently has a place in treating epilepsy.”
ElSohly said they understand the urgency and immediate need for improved treatments and are moving forward under that motivation. “At the same time, our efforts are balanced by great measures of care, safety and compliance with current laws and the safety of the patients. If and when regulatory requirements are met and clinical-trial setup is complete, enrollment of appropriate patients will begin.”
Taylor and Tucker
Today, Potts no longer works, so that she can oversee the care of her sons. She was recently able to secure full-time care for Taylor in her home, which has relieved some of the stress that comes from being a sole caregiver, as well as the mother of two other boys.
“When we first came home, he got approved for 16-hour care,” she said. “I felt like he was mine. I can take care of him. I got this. The first month, I kept sending everyone home until it finally got the best of me. They’re (the caregivers) like our family now.”
Despite his condition, Potts said she feels that Taylor understands her, and he sometimes nods his head “yes” or “no.” She describes him as “jolly,” and said he often smiles at his family while lying in bed.
Tucker is also a happy soul with a bright smile who loves school. “He never complains and hardly ever cries,” she said. “Even when you think he should be crying, he’s always happy.” Both boys have been diagnosed with epilepsy, and neither are candidates for surgery.
Potts said her oldest son, Tyler, is a good big brother, who often helps with their care, but he also struggles, wondering why he doesn’t have a disorder like his brothers, or if he will develop it. It’s a condition that may have been inherited. Potts said their biological father also experienced seizures.
She has become very organized in recent years. All of the medications the boys take daily are on a shelf in the kitchen with instructions written and taped above above them. Potts said she placed the detailed instructions there in case something happens to her one day and no one else knows how to dispense their meds.
She has also converted two back bedrooms into a large storage room that houses the boys’ medical supplies, and the family has requested money on GoFundMe.com to purchase a handicap accessible van.
A painted sign, made by a family friend, hangs above Taylor’s bed with the words of a popular lullaby. “One of my friends made it for me when Taylor was in the hospital this last time,” said Potts, who often sings the song to her boys when they are having seizures or in comas.
“You are my sunshine. My only sunshine. You make me happy when skies are gray. You never know, dear, how much I love you. Please don’t take my sunshine away.”