John Pesch is only 12 years old, but his body has already felt the ravages of debilitating disease. For more than four years, John has battled Crohn’s disease, a condition that causes inflammation of the gastrointestinal tract. He has taken stronger and stronger medications to combat his symptoms, only to have his body reject them one
But John feels far from hopeless. He and his family believe he could benefit from cannabis oil (CBD), a form of medical marijuana that is already being used to treat inflammation and chronic pain in Colorado as well as 25 other states. Their hope now lies in the possibility of John being able to access medical marijuana legally here in Louisiana within the next two years. In May, Governor John Bel Edwards signed into law Senate Bill 271, expanding the types of medical conditions that can be treated by medical marijuana and making it easier for physicians to recommend the treatment.
John discovered he had Crohn’s disease after fracturing his leg when he was in first grade. The injury required surgery, which caused an infection. A round of antibiotics began triggering the symptoms of Crohn’s disease. “We have since been going from medicine to medicine trying to find a treatment that works,” he says.
Many of his medicines treat symptoms, including nausea, cramping and a host of other issues. The effects of his disease are so severe that he must be home-schooled by his father. Considerable preparation has to go into each family outing. The illness has stunted John’s growth, and he must be cautious about his calorie intake.
“We see him taking these medicines everyday and he feels awful. They suppress his immune system,” says his mother Wendy. “After a while, John’s body starts making new antibodies to the medicine he is taking, so his body starts rejecting them.”
Like many families of patients with chronic illnesses, the Pesch family has considered moving to Colorado, where medical marijuana is already legal. They have seen a family friend who also suffers from Crohn’s see significant improvement after taking CBD oil capsules there. But until now, the legal ramifications have stopped them from packing up. “The legal ramifications are what’s stopping us,” says John’s father Alan. “[Our friend] is like a prisoner there in Colorado. If he leaves the state and something happens, he gets into an accident, they could find cannabinoids in his body. He could be taken away from his parents and his parents could be charged with a felony. We can’t go to Colorado and come back. We just have to wait.”
That’s where the new Louisiana law comes in. Authored by Sen. Fred Mills, R-Parks, the bill faced some backlash
from groups such as the Louisiana Psychiatric Medical Association because of concern that there isn’t enough research available to prove the benefits that patients could expect from the use of medical marijuana.
Mills, who is also a pharmacist, says he wrote the bill because he wanted to give patients suffering from chronic illnesses more options. “I believe medical marijuana is an option that a physician and a patient with a debilitating condition should have opportunities for,” he says.
Although the bill expanded access to medical marijuana to cover Crohn’s disease, it will likely take at least another year and a half until patients have access. Medical marijuana oil also faces opposition from select groups in the law-enforcement community, according to Mills.
“The infrastructure to grow it has to be put in place. We also need to know how to place dispensaries and find the licensed physicians and pharmacists willing to dispense it,” says Dr.
Mike Burdine, president of the Louisiana State Board of Medical Examiners. The board was put in charge of finding research that supports the medical benefits of marijuana in the treatment of certain illnesses; the new law allows for therapeutic use by patients with a variety of debilitating conditions ranging from Crohn’s to cancer to HIV/AIDS.
Both Southern University and the LSU AgCenter have signed on to be the state’s official grow sites. Next, 10 dispensaries must be chosen.
“A concern for many doctors at this stage is trying to understand the dosage that should be given out. When we looked at all of the studies, we found that the literature is very limited. Medical marijuana is still illegal in most of the world, and that makes it extremely restricted for research,” says Burdine. “We are still limited in being able to understand how it can be used for the treatment of disease.”
Few doctors are even willing to recommend it at this point, which is why Katie Corkern of Amite was surprised to find a neurologist willing to recommend that once legalized, marijuana oil could work as an alternative for her 9-year-old son Connor.
Connor was born with a rare brain malformation called schizencephaly, which caused developmental delays and makes him prone to recurring seizures. The struggle to find the right medicine has progressed throughout his life. Connor first started experiencing seizures at six months old, which was also when he was prescribed his first medication.
“They started to get more intense and he started on another seizure medicine. We probably added one every year after that,” says Katie.
By 2012 he was on five seizure medications. That’s when his toughest medical battle began. “Connor began seizing for 36 straight hours,” Katie says. “They stopped it by inducing a medical coma. They weren’t sure that he was going to wake up.”
Connor did wake up, but he lost all of his skills. He couldn’t sit up; he couldn’t eat or drink by mouth. He couldn’t speak.
This was a turning point for the Corkern family.
“We were really out of options,” Katie says. “We added phenobarbital and that made it six medications that he was on.”
Connor began seeing a different neurologist, who suggested that Connor might be a candidate for medical marijuana oil treatment once it becomes legal in the state.
They began learning more about CBD oil and agreed it could be another option. They too considered moving to Colorado but decided against it. They have two other children, and extended family is in Louisiana. As she explains, certain strains of CBD oil can be used to calm the brain because it doesn’t just target the brain stem.
“The seizure meds have had horrible side effects,” she says. “His liver is starting to shut down, his teeth are decalcified, and he is anemic. Before, he was healthy otherwise.”
Connor continues to suffer from 300 to 600 seizures a day, the majority of which last for one to two seconds. “It’s like a little blip,” Katie says. “He goes into a fog or daydream.”
Katie has been a vocal advocate for providing access to medical marijuana for the treatment of certain illnesses in Louisiana. She continues to participate as the law is being implemented.
“I am known as the medical marijuana mom,” she says. “When it’s for your child, you will do everything and anything to help them.”
Now both the Corkerns and Pesches play the waiting game. They wait to see if a dispensary will open close enough to home. They wait to find out who will be licensed to help them.
Alan Pesch, who recently founded the Crohn’s & Colitis Foundation of South Louisiana, remains focused on trying to draw attention to his son’s condition and to the possibility of giving his son a normal life with the use of CBD oil.
There may not be a lot of research available to prove the actual benefits of the oil on Crohn’s patients. However,
John need only look to his friend Coltyn Turner in Colorado for inspiration. Turner, who was wheelchair bound when he first moved to access CBD oil capsules to treat Crohn’s, is on a regimen of four CBD capsules a day and is now 20 pounds heavier and strong enough to hike around his new home state, say John and Alan.
“There is no cure, but he is doing a lot better,” John says. “All we can do now is wait and hope for my chance.”