By Emma Farmer
Due to the content of this article, some names have been changed, including the author’s.
Jeremy & Maggie
Maggie doesn’t tell many people the whole story. She is a vocal supporter of medical marijuana, but telling the truth, the whole truth, about the most important person in her life is just too risky. “Don’t mention me in that article,” she says. “Promise you’ll leave my name out.” I tell her she can proofread my article before anyone else sees it, and I tell her that her family’s story needs to get out there. Reluctantly, she agrees.
People involved with cannabis culture have long been familiar with young medical cannabis patients like Mykayla Comstock, Jayden David, Joey Perez, and the late Cash Hyde. Slowly, the general public has also become aware of medical cannabis for children, as media outlets from CNN news to the Rikki Lake show have featured their stories. The concept of “cannabis for children” doesn’t cause the same knee-jerk reaction that it did even a few short years ago.
But all of the children featured prominently on television and across the internet have been treated in states with medical marijuana programs, under the close supervision of doctors. What about seriously ill children who don’t happen to live in medical marijuana states?
Maggie is the mother of Jeremy, a severely ill child using cannabis in a non-medical state, where it seems reasonable to be secretive and afraid: in the United States today, children are routinely removed from their parents’ custody due to cannabis use. However, it’s usually the parents’ cannabis use that is under scrutiny. For parents of a severely ill child using cannabis as a last resort medical option, the situation is a bit more complicated: the parents’ fear of losing their child to state custody is compounded by the fact that if the authorities intervene, the child will no longer be able to receive the only medical treatment that has worked.
“For parents of a severely ill child using cannabis as a last resort medical option, the situation is a bit more complicated: the parents’ fear of losing their child to state custody is compounded by the fact that if the authorities intervene, the child will no longer be able to receive the only medical treatment that has worked.”
Jeremy had his first seizure when he was just a few months old. By the age of 5, he was clearly having developmental difficulties, and showing signs of autism. Over the years, Jeremy continued to have grand mal (tonic-clonic) seizures, sometimes as many as a dozen a day. As he reached puberty, the seizures became even more frequent and severe. Maggie has lost count of the times Jeremy has been hospitalized, but she does know that his doctors have tried more than 50 different prescription cocktails to stop his seizures and control his pain, and he has undergone two life-threatening brain surgeries. None of these treatments have significantly improved his health.
Maggie has never tried marijuana herself. Through online support groups for parents of severely epileptic children, Maggie learned about cannabis therapy.
It was like discovering a whole new world, a whole new language. Maggie learned that the cannabis plant contains more than 100 chemical components, known as cannabinoids. The cannabinoid Delta9-THC is responsible for the “high” that users get, along with relief from nausea, stimulation of appetite and suppression of muscle spasms. The cannabinoid CBD is not psychoactive, and can reduce seizures and convulsions. Maggie read about special preparations of high-CBD and low-THC cannabis that were successfully controlling epileptic seizures in kids with the same rare condition as Jeremy.
It sounded like the miracle Maggie had been waiting for: not only did it work, it didn’t have a huge list of dangerous side effects like the prescription medications Jeremy had tried. And unlike the pharmaceuticals, it wouldn’t get Jeremy “high.” Maggie believed that trying high-CBD cannabis might offer not only a chance at a normal life for Jeremy, but could actually be his only option for survival. Understandably, she was desperate to give it a shot.
As it happened, Jeremy’s father, from whom Maggie is divorced, lives in a state with a medical marijuana program. Like many children in shared custody agreements, Jeremy has residency in both parents’ home states. So last year, Maggie took Jeremy on an extended trip to his father’s state, where Jeremy got his medical marijuana card and began treatment.
The change was immediately evident: fewer seizures, less intense seizures, shorter recovery time, a significantly better quality of life. The sudden improvement in Jeremy’s cognition was astounding to Maggie: her child was suddenly functioning at a much higher level, with an improved attention span, increased vocabulary, and more effective communication skills. The physical changes were stunning too: Jeremy’s muscles were stronger, his stamina improved, and he began to participate and interact with others at a whole new level. Jeremy went from being withdrawn and emotionally detached to playing with his cousins, smiling and laughing.
Although their stay in a state where Jeremy had legal access was temporary, Maggie’s commitment to treating Jeremy with cannabis remained after they returned home. Desperate to find a way to treat Jeremy legally, she reached out to cannabis advocates in her home state.
When Maggie first contacted me, I recommended she talk with an attorney I know who specializes in medical marijuana. That attorney’s advice to Maggie was simple: “Move to another state.” But this advice is hardly simple in practical terms. In this economy, finding a job across the country, not to mention leaving family support behind, selling the family home, leaving a school with a great special needs program, and moving away from doctors who had cared for Jeremy since infancy seemed impossible. So Maggie, a medical professional who has always prided herself on being a law-abiding citizen, started to consider breaking a whole lot of laws to provide Jeremy with a special form of medical marijuana tailored specifically to his condition.
“That attorney’s advice to Maggie was simple: “Move to another state.” But this advice is hardly simple in practical terms.”
Meghan & Vivian
I met Meghan for the first time at the Americans for Safe Access Conference in Washington, DC. She was wearing a beautiful patterned cardigan sweater, which I complimented. Meghan’s eyes filled with tears as she told me that she can’t wear the sweater around her daughter, Vivian, because looking at the pattern makes Vivian seizure.
Vivian has Dravet Syndrome, a rare form of severe pediatric epilepsy, and has been having seizures since infancy. Initially, says Meghan, the seizures were infrequent but severe, with each individual episode lasting around 45 minutes to an hour. Around Vivian’s first birthday, after trying numerous pharmaceutical medications and a special diet, the seizures became less severe but more frequent. On a typical day Vivian, now almost 2, has about fifteen noticeable seizures. Meghan believes that Vivian has additional daily seizure activity in her brain that is very short in duration and may not be visible, a maternal gut instinct which has been supported by the numerous EEGs Vivian has had.
Although Meghan and her family live in New Jersey, which has a medical marijuana program, there are many obstacles preventing Vivian from starting cannabis therapy. For starters, it isn’t easy to find a doctor willing to recommend marijuana for a toddler. Even though Vivian has now gone through the steps of assessment and recommendation from a doctor and has received her medical marijuana card, the waiting list at the state’s only dispensary is reportedly 7 months long. During those 7 months, Vivian will likely have over 3,000 seizures.
But even when Vivian’s turn comes at the dispensary, there is no high-CBD low-THC medication available there. As far as Meghan is concerned, it isn’t likely that the medical cannabis strains available in New Jersey’s only dispensary will help Vivian at all. Even if New Jersey begins offering a high-CBD strain for epileptic children, state regulations do not allow dispensaries to carry edible forms of marijuana, and the state’s monthly allowable amount of dried bud doesn’t come anywhere near enough to make tincture or butter at home; patients who need to ingest their cannabis rather than smoking or vaporizing will have to wait an interminable amount of time for the program’s restrictions to change.
“Even though Vivian has now gone through the steps of assessment and recommendation from a doctor [in New Jersey] and has received her medical marijuana card, the waiting list at the state’s only dispensary is reportedly 7 months long. During those 7 months, Vivian will likely have over 3,000 seizures.”
“The amount of marijuana used to make Charlotte’s medicine is about 3.5 pounds per year,” says Realm of Caring founder Josh Stanley, who grows “Charlotte’s Web”, a high-CBD strain of medical marijuana used for young epilepsy patients. “You’d need a whole lot more plant material if you were using a typical medical strain without such a high CBD content.” Charlotte, for whom the strain was named, lives in Colorado, and is one of the children featured in a video about using medical marijuana to treat the same form of epilepsy that Jeremy and Vivian have. The video, which recently went viral online, has led to many discussions among parents like Maggie and Meghan, and has been helpful in explaining to their friends and family why cannabis therapy seems so promising.
“I’m so angry!” says Maggie during one of our late-night phone calls. For the past few months, Maggie has been illegally importing Jeremy’s legally prescribed medical marijuana across the country in order to treat Jeremy in their home state. Jeremy’s cannabis regimen has continued to work well, far better than the pharmaceuticals, far better than the surgeries. Maggie tells me proudly about Jeremy’s recent progress at school. His teachers have all commented about Jeremy’s sudden ability to function at a visibly higher level. They have also told Maggie that Jeremy’s behavior has improved and that he seems much happier. For the first time in years, Jeremy has gone for almost a week without a single seizure. The community of parents of epileptic kids – connected through various online support groups – is abuzz with CBD therapy success stories, full of interest and questions.
Maggie wishes she could tell everyone in her life the reason behind Jeremy’s sudden turnaround, but of course she cannot. Maggie is angry about this, and she is even angrier tonight, because Miami Children’s Brain Institute, one of the country’s most esteemed treatment centers for childhood epilepsy, has published an official statement about cannabis use on their website – a website that many parents turn to for information.
In response to parents’ inquiries about CBD therapy following the viral sharing of the Charlotte and Zaki video linked above, the Miami Children’s Brain Institute made the following statement:
“If CBD doesn’t help seizures, then why did the children in the video get better?
There are several possibilities, including:
Random chance: it got better for no reason (nothing changed, but some days/weeks/months are good and some days/weeks/months are bad)
Confounding cause: it got better because something else changed at or around the same time
Bias: it didn’t get better, but the patient/parent was so hopeful that they perceived an improvement
Dishonesty: it didn’t get better, but the patient/parent is being dishonest (unlikely, but is included for completeness)
Despite the parenthetical disclaimer about completeness, the mention of “dishonesty” hits Maggie hard.
“They’re saying I’m lying,” Maggie says. “It’s insulting. It hurts.”
I’ve met Jeremy. I’ve visited his school. I’ve seen his baby pictures, heard countless stories about his family’s struggle. It’s impossible to deny that medical marijuana has been effective for Jeremy, and for many other epileptic children whose “anecdotal stories” provide irrefutable evidence to those familiar with cannabinoid science. It’s heartbreaking to think about how many more seizures Vivian will have to endure before she is able to access the medicine that could save her life, and it remains unclear how long this process will take.
Advocates must demand change so that in the future, children like Jeremy and Vivian will not have thousands of seizures or try dozens of prescription pharmaceuticals or have numerous brain surgeries before they can try medical marijuana. And we must demand change so that one day, when this grotesque chapter of prohibition in our country is finally over, parents like Maggie will no longer have to hide.