As a parent of a child with severe genetic epilepsy encephalopathy, I cannot tell you how many times I have been asked if medical marijuana is safe for kids and whether or not I've considered treating my daughter with medical marijuana. Having seen the Dr. Sanjay Gupta’s 2013 CNN documentary Weed, someone will ask, “Have you heard about that little girl with epilepsy and marijuana? Have you tried it for your daughter?”
The idea of using medical marijuana has become increasingly mainstream since Weed aired in 2013. In the 25 states with a medical marijuana law, people are using medical marijuana to help with many ailments, including symptoms of multiple sclerosis, traumatic brain injury, and Alzheimer's. The use of medical marijuana is not without complexities, as research on the medical uses of marijuana has been strictly limited in the United States and the federal government is still upholding its prohibition of medical marijuana. Doctors also seem torn — with some arguing for a compassionate use of medical marijuana while others feel more research is necessary first.
No use of medical marijuana has caught people's attention quite like the use of medical marijuana to treat young children with epilepsy. Weed shared the story of Charlotte Figi, a child with Dravet Syndrome, a rare form of epileptic encephalopathy that onsets in the first year of life, for whom a specialized strain of medical marijuana, Charlotte’s Web, was named. Charlotte’s Web was bred to be the opposite of what recreational marijuana users seek. It's low in THC, the chemical in marijuana that gets you high, and high in cannabidiol (CBD), the chemical that appears to help control epilepsy, among other things. Medical marijuana changed Figi's life, saving her from a near constant state of seizures.
However, for many parents who have considered treating a child with medical marijuana, there are a number of complexities to consider. The first is that, like any medical treatment, there are discussions about safety, efficacy, treatment goals, interactions, and the child’s wishes. But when you're talking about treating a child with medical marijuana, a drug that's still classified by the United States federal government as a schedule 1 drug, — a drug that has a high potential for abuse and no medicinal value — there are complex legal, social, and financial considerations to weigh. Many families of children who are severely ill have struggled with the reality of such decisions as they advocate for legislative changes in their home states while watching the clock ticking for their children, or chose to treat illegally, or uproot their families to legal states. And all of these choices are further complicated by the wide range of results seen in children, access to products of variable quality, and the financial impact of attaining medical marijuana.
In an effort to understand the complicating factors at work when giving medical marijuana to children, I spoke with a father who gave his infant son marijuana illegally, a pediatric neurologist, and a whole lot of parents whose lives have been changed forever by medical marijuana. Here's what they had to say:
The Medical Perspective
There's a lot of ground to cover in terms of medical proof (and lack there of) for using marijuana as a medical treatment. Others have spoken in more detail than I can about the topic, but it's fair to say that there have been several, primarily international studies, conducted on the medical use of marijuana that show some promising results, including seizure reduction that's approximately consistent with the rates of medications already on the market. There has been very little American research on the benefits of marijuana, because the US federal government has tightly restricted the use of marijuana in research. And marijuana has certainly not yet undergone the kinds of lengthy, highly stringent clinical trials that pharmaceuticals typically undergo, although there is currently a New York University clinical trial underway looking to make a case to approve Epidiolex, a marijuana-derived cannabidiol pharmaceutical and potential anti-epileptic medication, for use in the United States.
I interviewed Dr. Richard Simmons, a pediatric neurologist in New York State who is currently certifying pediatric patients for using medical marijuana, about the kinds of factors he has had to weigh as a physician. On the one hand, he explains, when dealing with patients where "you’ve tried everything that is reasonable and sometimes unreasonable in the hopes that it might miraculously work, there comes a time that you may think that you don’t have anything left to do. And I feel like in those situations, medical marijuana [is] one more thing; yet another option."
At the same time, he feels as a physician he doesn’t have the information he'd like to have in order to make an informed evidence-based decision about the use of medical marijuana. He tells Romper, “We have a lot [medications] that have been well studied that have very clear lists of potential side effects that we are well-versed in and prepared to look for and recognize. And I can tell you all the data in terms of who it works for, how well it works.” However, at least for the time being, that level of information doesn't exist for the use of marijuana. He adds,
At the same time, Simmons points out, many of the drugs at use in treating his patients — for seizures, migraines, tics, and other neurological disorders — are almost all off-label uses, meaning that these drugs have not undergone clinical trials for the specific population. This is because pediatric clinical trials are not typically done after a drug has been proven to meet safety standards for an adult population. Also, drugs are often borrowed from other specialties, especially psychiatric mediations. So, he says, “we use a lot of [medications] off label and even the new drugs come out, the same way we use medical marijuana. It’s like we’ve tried everything else, [and] this one seems to be promising in this type of seizure disorder. Let’s give it a whirl if you’re willing to take the risk with me.”
There is good reason at the core of the rigorous pharmaceutical testing process in this country: the best standard of safety for the most people. And getting there takes time. But what if you're the parent of a child who doesn’t have any time?
Simmons agrees that the anecdotal stories, like Figi’s story, are very compelling and provide hope for families for whom standard treatments are not helping. He explained that among his patients, some are using New York State medical marijuana and others are using Charlotte’s Web Hemp, the hemp product currently shipped to all 50 states now and interpreted as legal under The United States Farm Bill of 2014, due to the fact that the hemp oil meets the criteria for classification of industrial hemp, as it contains less than 0.3 percent THC on a dry-weight basis. The results Simmons sees in his small patient pool seems to have dramatically improved seizures in one out of five patients. This is a rate that, he says, is consistent with other commonly used anti-epileptic medications and with the early numbers from the Epidiolex trial.
But What If It Was Your Kid?
So, let’s be real here. While there are certainly ways that the process of getting new treatments to the people who need them could be streamlined and pharmaceutical companies are often laughing all the way to the bank, there is good reason at the core of the rigorous pharmaceutical testing process in this country: the best standard of safety for the most people. And getting there takes time. But what if you're the parent of a child who doesn’t have any time?
Considering everything that happened and given the results, I asked Hall if the risk of using medical marijuana illegally was worth it. "Definitely," he tells me, adding that he'd do it "even if [medical marijuana] isn't the complete and final answer.”
For this piece, I spoke with one parent who found himself in just such a situation, and his next moves, were, for his family, obvious.
In 2014, BJ Dwyer’s son Waldo was diagnosed with a rare and aggressive form of eye cancer when he was just 6 months old. The doctors explained that Waldo needed aggressive chemotherapy to fight his cancer — this, Dwyer would come to understand, wasn’t just a matter of the chemotherapy; Waldo would also need other supportive therapies in order to combat his reaction to the chemotherapy. Dwyer explains he found himself looking at lists of drugs, opiates, steroids, narcotics, and side effects including “deafness, blindness, lockjaw, severe lethargy, sexual sterilization.” He tells me, “It made my skin crawl, and my head numb.”
Early on, Dwyer was approached by friends who he refers to as "Waldo’s uncles," who offered him an alternative: marijuana. Waldo’s family was in Philadelphia and, at the time, Pennsylvania didn’t have a medical-marijuana law. So the only way to try this treatment was to do so illegally. And thus began a story that saw Waldo’s support team “traveling across the country to find cannabis oil, illegally smuggling it home, sneaking it into the hospital for a year, and giving it to Waldo right underneath everybody's nose." Dwyer adds, "it all seemed to make perfect sense, once we decided that the alternative, which is to say, giving hard drugs to a baby, was far worse than any legal trouble we might get into.”
For every person who hears that story and thinks, “Wow! Look at those amazing parents who took a huge risk to do what was right,” there are people who think of the choice to treat Waldo illegally with medical marijuana as, at best, an unfounded medical risk, and, at worst, child abuse.
Waldo was getting chemo when he started the marijuana oil. “Everything on the surface,” Dwyer says, “went on exactly as it was supposed to: We started chemo, we saw it take effect, we took home the bags of pharmaceuticals they gave us, as if we were going to use them.” And, they were giving Waldo medical marijuana, often, while Waldo was inpatient at one of the pre-eminent Children’s Hospitals in the world, Children’s Hospital of Philadelphia. Dwyer explains in an interview with Romper, “we were bringing weed into the hospital with us, right inside our brown lunch bags.”
What happened, however, helped Dwyer know that he’d made the right choice, that it was totally worth the risk. “The more we saw Waldo improve, the more we saw the common side effects of chemo melt away (and I mean, disappear), the more confident we became in our path. We knew we were doing something right.”
Two years later, Waldo is now a happy, healthy little boy. His father is clear about the role that modern medicine played in Waldo’s health: “Waldo absolutely needed the help of these incredible doctors and nurses during his journey. He still needs them, for MRI scans and quarterly check-ins. He'll be needing them for the rest of his life.” However, he also feels certain that Waldo would not be where he is without medical marijuana. He says,
The Other Realities
When I first heard Dwyer telling Waldo’s story on a short video Dwyer produced with his friends, called "Waldo on Weed," I was really impressed not so much by the results, but by how candidly he spoke about their experience. Because, let’s be real, for every person who hears that story and thinks, “Wow! Look at those amazing parents who took a huge risk to do what was right,” there are people who think of the choice to treat Waldo illegally with medical marijuana as, at best, an unfounded medical risk, and, at worst, child abuse. Because otherwise? Otherwise, access to medical marijuana would be available in more than 25 states. Otherwise, people who live in legal states wouldn’t feel afraid of the stigma and potential legal problems of treating their children (or themselves) with medical marijuana.
Many other pediatric patients use hemp oil or medical marijuana as only a portion of their treatment, meaning that, like Oliver and Waldo, cannabis treatment is not necessarily replacing all of their treatment by modern medicine. But it does mean that families often have to make a difficult choice: decide to tell their doctors about their choice to treat with cannabis, or keep it hidden.
While researching this article, I spoke with several families who were willing to share details about their choices to treat their children, both legally and illegally with medical marijuana and/or hemp oil, but several families did so, only to help inform me on costs, dosages, and experiences and asked that their names not be associated with the article in any way. One mom, legally treating her son with a severe epileptic encephalopathy, in legal state with CW Hemp oil, tells Romper that she doesn’t share much about her son being on cannabis “due to the legalities and stigma.” Even in a legal state, she explains, “Our current neurologist knows what we are doing, but is ill equipped to [guide us]. Until there is more change in [our state] or doctors ‘come out of the closet,’ we are on our own.” However, she keeps at it because she sees it taking effect for her son. She says, “He became more alert and active, spasms would drop in count for a while with each titration, but finding the right dose, and right strand for that matter, isn't easy.”
Maly Redfearn, a Canadian mother, spoke with me openly about her use of hemp oil to treat her son Oliver, who, in the summer of 2014, was in a decline due to side effects of his severe, genetic form of epilepsy. After watching Weed, doing personal research, and speaking with other parents, Redfearn decided to order a cannabidiol (CBD) hemp oil from the US. Their doctor gave them very little guidance in the dosing, but once they started treating Oliver, they saw improvements immediately. She tells Romper that, eventually, “our neurologist agreed to refer us to a cannabinoid clinic and he gave us our license for medical marijuana as well as some help with dosing.” Oliver continues to do well on his hemp-oil treatment, which is part of his overall epilepsy treatment. He also takes low doses of other anti-epileptic pharmaceuticals (Trileptal and Clonazepam) and is on the ketogenic diet.
Many other pediatric patients use hemp oil or medical marijuana as only a portion of their treatment, meaning that, like Oliver and Waldo, cannabis treatment is not necessarily replacing all of their treatment by modern medicine. But it does mean that families often have to make a difficult choice: decide to tell their doctors about their choice to treat with cannabis, or keep it hidden. Many of these children are fragile enough that they are in and out hospitals for treatments, hospital stays, and doctor’s visits.
One father I spoke with, Ryan Hall, has twin boys who both have a rare form of genetic epilepsy. His boys were frequently hospitalized and, he explains to Romper, after watching Weed while one of the children was hospitalized, he got interested in this as an option. The boys’ mother spoke with Figi’s mother, and even though the family was in New York State, a state that, at the time, did not have a medical marijuana program, they moved forward. The family went out to Colorado to acquire the treatment and get advice on dosing from the Realm of Caring and started cannabis treatment in hopes that it would work wonders for the boys. However, when their local hospital discovered this, they called CPS on the family. Three weeks later, the Halls moved out to Colorado permanently.
For Hall’s boys, cannabis was not the miracle treatment they’d hoped for — even though it did help the boys. In an interview with Romper, Hall explains that his boys we able to wean off of many of their medications, and are currently down to just one medication, a rarity for children with their disorder. Considering everything that happened and given the results, I asked Hall if the risk of using medical marijuana illegally was worth it. "Definitely," he tells me, adding that he'd do it "even if [medical marijuana] isn't the complete and final answer.”
Other parents I spoke to talked about their concerns about traveling with medical marijuana. Since it's their children’s medicine, if they need to travel it must travel with them. However, just because the marijuana is attained legally in one state, doesn't make it legal to bring into another state. Lourdes Smith explains that when she traveled with her daughter Lulu to Ohio in order to meet her daughter’s new service dog, she was terrified at the airport because the medical marijuana was in her luggage. In an interview with Romper, Smith says, “When we landed, the bag it was in didn't come out — I text[ed] my husband and said you might need to call a lawyer for me! Luckily, the bag made its way out!” She also told me that even though her family is located in a state where medical marijuana is legal, she's still worried about the stigma:
But she has found that everyone has been very compassionate about it: "Turns out, they are all accepting and just want what is best for Lulu. I've even disclosed [it] to her Catholic school.”
As you can see, the range of experiences with the use of medical marijuana — not just with respect to treatment results, but also with respect to social responses, medical support, and legal realities — ranges far and wide. Other factors, like costs, can also vary based on state, formulation, dosing, and the size of the child. Of the families I spoke with, those with with small children using hemp oils and medical marijuana in some states and Canada reported monthly costs as low as $70 per month. In other states, for larger children who need higher doses, the costs can escalate to hundreds of dollars a month — none of which is covered by insurance. Other costs, like costs for families to relocate, travel to attain marijuana in other states, and fees in some states in order to access medical marijuana programs, can also be prohibitive.
Most of these families are, of course, spurred on by the stories of great successes, but they're also encouraged by partial successes too: stories that say maybe, just maybe, their child might be able to take one fewer drug, might be able to see a few more seizure-free days, might begin to smile again. Because these are families who thrive on the littlest gains most other parents take for granted.
But despite these complexities, families are still seeking out medical marijuana as an option for treating their critically ill children. They're looking for their states to pass comprehensive laws complete with regulations to help oversee the content of the medication, they're pushing their doctors to learn more to help them treat their children, and they're demanding clinical trials and medical research. Parents are constantly reminding law makers that the kinds of medications they treat their children with every single day are drugs with serious side effects that are not always tested on children, and they may even alter their children’s consciousness. For parents hoping to treat their children with medical marijuana, they don’t have a lot of options.
Sandy Bush, a mother and registered nurse, shared a letter she wrote to the Tennessee State Health Committee in support of a medical marijuana bill with Romper. She told the committee that her son Cam, “has spent most of his life having seizures and because of this he is very developmentally delayed. He has been on six different medications. We have seen his lively personality come and go and it is harder than I can describe to gain and lose your child over and over again.” Parents like Bush all across this country are pleading to have this option available in their toolbox for helping to treat their children.
The devastating reality is that most of the people I spoke with for this article don’t expect miracles for their children. They are people who've spent too much time in hospitals, making difficult decisions in impossible situations; they're people who know that if miracles existed, their children wouldn’t be fighting for their lives the way that they are. Most of these families are, of course, spurred on by the stories of great successes, but they're also encouraged by partial successes too: stories that say maybe, just maybe, their child might be able to take one fewer drug, might be able to see a few more seizure-free days, might begin to smile again. Because these are families who thrive on the littlest gains most other parents take for granted.
Their children cannot wait for a miracle. They work for their tiny gains through hours of physical therapies, medication changes, ridiculous numbers of doctors visits, and, so many of us hope, in weed.