The Butterfly Effect: The complexities of paediatric cannabis
Dr. Jennifer Anderson saves her son, herself and hundreds of kids
Having never planned to be the pot doc for kids, Dr. Jennifer Anderson battled bureaucracy, stigma and apathy as she sought care for her dying son. The experienced opened a door to helping patients and discovering her life’s passion. Today she advocates and educates on medical cannabis while watching her son and family thrive. Lesson learned: don’t ever underestimate the power of a mother’s love.
Heads Lifestyle: Good morning. Thank you for taking time out of your busy schedule to chat with us. When you went into medicine did you ever envisage becoming the pot doc for kids?
Dr. Jennifer Anderson: No. I often joke that if you told me ten years ago I’d be giving marijuana to kids, I would have said you’re crazy. No, I never set out to be a doctor that gave marijuana to kids. I grew up around people who used marijuana for chronic pain so I knew that it worked for some people. The funny thing is that when I started [my practice] some patients, who were on cannabis, had approached me to take them on and I said, “No, I’m just a fresh grad. I know I’m allowed to but I’m not comfortable with it and I don’t know anything about it.” A year later, I was faced with a child that was dying of seizures and I didn’t know what to do.
Dr. Jennifer Anderson draws on strength, tenacity and community to meet the challenges in her personal and professional lives.
Photo: Florence Photography
HL: What was the reaction you got when you first suggested cannabis for your son?
DJA: When I asked about cannabis, my neurologist was like, Oh, well, it might work but we really can’t help you because we’re not allowed. It’s a bureaucracy and the politics were preventing anybody from even touching it with kids. That was frustrating for me. Then when I did try it, it worked so well, I didn’t understand why nobody cared. It seemed like nobody cared that it was working well. All they cared about were the politics of it.
HL: Can you describe that initial experience using CBD?
DJA: My son was seizing all night. He has cerebral palsy and he was having vomiting seizures in the middle of the night. I’d have to quickly grab him and turn him over so he wouldn’t aspirate. I’m doing that multiple times a night and I’m not sleeping ‘cause I’m worried about him. You’re just in this constant state of awareness, and, you know, it was just me, so it was a little bit crazy.
I started it on a Friday night. I was exhausted and I didn’t know what else to do. My friend had a bottle of Charlotte’s Web and I thought, Well, I mean, this is the last thing. I just quit my clinic because I couldn’t work because I was in the hospital all the time. I gave him one drop and he slept the whole night. I thought it was a bit weird because he was always up seizing. So the next day I gave him a drop in the morning and then a drop the second night and he slept the whole night again. Then Sunday night. On Monday morning, I brought him to day care and I’ll never forget because the day care worker said, "Nicholas looks different. He’s bright and he looks like a different kid." And I looked at him and thought, Yeah, he does. What happened was he had slept for three nights, so all of a sudden he was awake. Before he was a zombie. We noticed the change right away. It worked really well immediately.
Within a week or two, my respite worker said, "Nicholas is starting to walk again, and he’s starting to eat again." He wasn’t choking on everything because his seizures really affect his swallowing. So we continued and over the course of six months, the seizures just dropped substantially. It was just such a blur and I didn’t really know what to think of it.
Then in the spring, he started having breakthrough seizures and turning blue. We kept going to ER because nothing was working and they’d load him with whatever and send him home and after three, four weeks of that I thought, Well, this isn’t working. I don’t know, I give up. But then this physician from Montreal, Dr. François Hallé came out to do a talk for veterans and we went for dinner. I just expressed all my frustration to him and he introduced the idea of dosing. His background is physiology and mine is too, so we had a really good conversation about the mechanisms that were already being discovered with the CB1 and CB2 receptors and how it might be working with epilepsy. I started realizing there are actually other people that are exploring this and there’s science behind it. He helped me.
We dosed it based on weight and we put it through my son’s G-tube and Boom! everything stopped. And through that experience I thought, Wow! This can be life changing. If we can figure out a method, we can develop a dose per kilo strategy. Then we can replicate it and maybe this is something that can help a lot of kids.
Dr. Anderson with her son Nicholas who suffers from cerebral palsy and intractable epilepsy.
HL: You’ve had to sacrifice certain aspects of your medical practice. How do you feel about the direction your career has taken?
DJA: I think sometimes things happen in life that, in retrospect, save you. It’s just been a really rough roller coaster. I was always interested in everything and when you’re a new grad, you get offered so much stuff in terms of responsibilities because everybody’s tired and they want to offload onto the new grads. But you become so exhausted and you don’t know how to get off this wheel. That’s how I felt. I loved my practice. I loved everything I did but I didn’t know how to put my kids first and to reorganize my life after I went through a divorce and was now a single mom. I had to close my practice and quit the hospital; the only thing I did was continue emergency because it paid my bills. But it’s made me put my kids first and the only practice I do now is the cannabis practice, which is something that I love and am passionate about.
HL: What does a typical day look like for you?
DJA: Where do I start? I have three kids and I’m a single mom so my schedule really revolves around my kids. I try to book a lot of things during the day when they’re at school. I work in emergency and in hospital and schedule that around my kids. Then there is the cannabis work, which is more my passion. I do clinics during the day, usually once or twice a week by referral—everything from paediatrics to psychiatry to neurology. I have a consult-based practice, which allows me to cater my days to whatever is needed.
HL: Tell us about your patients?
DJA: My youngest patient is about three months old and my oldest patient is probably 105. So I see a wide range of patients. It started with just kids—primarily epilepsy, autism, lots of mental health, cancers and pain related to cancer, symptom management of cancer, sometimes patients, especially in paediatrics, want to explore really high doses of cannabinoids for cancers like glioblastoma. I never make any promises but we try to find strategies that may have worked before. With teenagers, it’s a lot of epilepsy, lots of mental health, lots of risk mitigation. And for adults, it’s everything from chronic pain, anxiety, cancer-related stuff, benzo and opioid withdrawal, addictions—the whole gamut. And with seniors, it’s more sleep and arthritis.
Cannabis has given Nicholas a second chance at a happy childhood.
HL: And what is your son Nicholas like today?
DJA: Nicholas is a happy kid. Obviously, this is post-cannabis because before cannabis he was pretty much a zombie. You couldn’t tell sometimes if he was seizing or not. He’d be sitting in his stroller sort of in a daze. Our life really revolved around him and whether he was okay to take out or not. After cannabis, he really came alive. Now he’s a really happy nine-year-old. He still has seizures but we’re talking once every couple days, and they’re very small, nothing to take us to hospital. We haven’t been in hospital for three years now. He loves Paw Patrol and Ninja Turtles. He will watch the same things over and over. He’ll play with his little figurines. He started swimming this year, which was insane, with a lifejacket, but he loves it. I think his brother, who is developmentally neurotypical, really helped him in developing. He just tries to do everything Zachary does.
HL: You must have a pretty complex family dynamic. How do you balance the needs of each family member with the demands of your special needs child?
DJA: That’s a really, really tough thing to do and I am not perfect at it. My kids often say our life revolves around Nicholas. And my answer usually is, Yeah, it kind of does. I’m sorry but it does. It does less and less because we can do more but at the end of the day there are things we don’t do because of Nicholas. I do have a respite worker who is with me probably 40 hours a week on average during the school year and that allows me to go out with my daughter or my other son, or just go out by myself. I’ve always made a point to do that because I think it’s super important. But it has always been difficult.
Tight-knit family from left to right: Nicholas, Jennifer, sister Sydney and twin brother Zachary
Photo: Florence Photography
HL: Speaking of finding balance, how to you carve out time for yourself?
DJA: My parents have been amazing. My mom is really good with my son and has always been someone I can leave him with because, as you can imagine, I can’t leave him with very many people. Before COVID, I was making sure that every couple of months I would book a weekend away. I like to snowboard. So in the winter, that would be getting to the mountains for a couple of days. I also like to surf. So right before COVID, I actually took a two-week trip to Nicaragua and did a surf-yoga retreat. I found out very early on as a doctor that you have to physically leave if you really want a break. You have to be somewhere where nobody can reach you—the middle of the ocean or on top of a mountain.
HL: Surfing?! How did you learn to surf in Manitoba?
DJA: Well, I started with wake boarding back when I was about 20. I had already done lots of snowboarding, so I went from snowboarding to wake boarding to wake surfing. Around 2010, I went to Hawaii on a conference and went surfing with some colleagues. I loved it, so I found conferences every year or two in Hawaii. I would go and take lessons with Brett Sheerin, who runs Maui True North. He also does adaptive surfing and kite boarding. He takes people with special needs and designs surfboards and things like that for them to use. It’s really, really awesome! You meet some really amazing surfers around the world. Brett was one of the first ones I met and he really inspired me. It really is a group of similar people. A lot of them are just easy going. It’s like a culture, it really is. And it goes well with cannabis, it really does.
Catching a wave in Hawaii, Dr. Anderson understands the importance of taking time for herself and connecting with nature.
HL: Why did you decide to make your story public on social media? And how has the messaging changed?
DJA: Well, my Instagram account was named Confessions of a single doctor mom. It started off as something to make me focus outward because, as you can imagine, it was really stressful. You know, share what it’s like to be a single doctor mom—the frustrations, the positives and negatives.
But then about a year and a half before COVID, I had a kid with brain cancer. The family was really desperate and I was terrified. I even talked to Dr. Bonni Goldstein because I didn’t see kids with cancer. I’d never used high doses and she helped me out in terms of dosing. So I started working with this one little paediatric patient. He had glioblastoma with a nine-month life expectancy. So we got him on a really high dose of THC and CBD because there has been some anecdotal evidence that it helps to reduce tumour size. We were just throwing things at it to see, although it was very clear that it might not happen.
The family came to me and said, Oh, by the way, we’re going on a trip to another country in a month. I was like, Well, you can’t travel with this. You can’t take this out of Canada. But this was their dream trip and I didn’t know what to do. He could die. He was on hundreds of milligrams of THC a day. I didn’t know what would happen when you took it all away. I got a little bit panicky. I mean that kid was like my own. All the kids I see I treat them like my own.
So I started making phone calls to some of my colleagues in the industry and various places asking how do get an exemption. How do I get him to be able to travel with this? And everyone was like, Well, that’s not a thing. You can’t travel with it. I actually ended up calling the embassy of the country where they were heading and they redirected me to the governor’s office. I ended up on the phone with the governor and I basically said, Hi, I’m a doctor from Canada. I’ve got a kid with a nine-month life expectancy coming on a dream trip and he could die. I need you to let him take his cannabis because right now it’s controlling his symptoms. And the governor was like, Oh my gosh! That sounds really important so I’m going to put you on with the health minister. So I talked to the health minister and she was fantastic too. Health Canada said that if I could get the other country to agree then they would grant the exemption. It was the day before they left and they were the first ones that any of my colleagues had ever heard of getting an exemption from both countries to travel with cannabis.
It was this experience that made me realize that I had a voice. And I thought, If the government would listen to me and allow a kid to travel, I don’t have to work with just the medical community. So I started to do other things like Instagram and I started putting my story out there. Just slowly because I was already terrified of losing my license or being ostracized, but I had already worked with kids for a few years and my colleagues respected my practice. I just started talking about it to anybody who would listen including my local politicians, because I realized that there are so many more people that can make this happen. It’s not just the medical community. I decided to work at it from the bottom up and the top down, and just try to make things happen. That’s why my Instagram sort of took a turn to really telling my story.
HL: That’s an incredible story of persuasion. What strategies have worked for you to invoke change?
DJA: What I’ve seen as a physician is that when you have a face-to-face conversation with a politician or with people that may be initially against cannabis, when you start talking about real individuals, like my son, they change. I always say this is my son, the face of cannabis. I’ve found that the reception has been way different than over the phone when they can’t see you as a person. I’ve used this strategy a lot to tell my story and to talk about the real issues my patients are having, and to present solutions. I find it’s changed a lot of people’s minds.
Dr. Anderson first started working with dying children; today her patients range in age from 3 months to 105.
HL: Were you ever worried about pushback or repercussions?
DJA: A clinic in Winnipeg had asked me to see kids there because they had opened up a cannabis clinic and all these parents were coming and wanting someone to see their kids with epilepsy. At first I said, "Absolutely not. I’m not going to be the pot doc for kids." But eventually I went back to the clinic and said, "Ok, I’ll see these kids, but only the ones that have failed everything." I was worried about the College coming after me. But then I thought that the College is not going to come after me for kids that are dying. So we started with those kids and there were really successful stories. We got so connected to all these families. It was really special meeting all these families that had kids like my own.
I won’t say that every kid had positive results, but nobody had bad results. The parents just wanted to try. I understood that in them because I knew what it was like to be the parent on the other end, when your kid is dying and the medical community has exhausted all their options. As a parent, you don’t want your child to die unless can you say you got to try everything that you thought might work. And so that’s what we did and year after year we got way more kids. That’s how I developed the practice that I have today.
HL: Are you familiar with the Butterfly Effect, named after an ancient Chinese proverb that says the power of a butterfly’s wings can be felt on the other side of the world? Do you believe sharing your journey with cannabis will contribute to a global change for the better?
DJA: I do and I have decided that I’m all in. After the experience with the young cancer patient, I mentally came to the decision that I’m all in. It’s all or nothing. I am now a physician that gives cannabis to kids and helps other physicians navigate cannabis for their patients. I think this should be allowed for kids who especially have failed traditional therapy and I’m willing to put my career on this. I share my story as a physician because I feel that might help other kids.
HL: How many families have you helped so far by introducing them to medicinal cannabis?
DJA: I would say 50 to 100 families. That’s not including mental health. If you add those, it’s probably upwards of 200. But patients come and go. I offer a trial of usually three to six months and go from there. We have regular follow ups to see if things are working. And if they do, great, I keep them on as patients. If they decide it’s not for them or we’ve exhausted a lot of options, then we can re-explore it some other time. So patients come in and out.
HL: What is the success rate with your patients?
DJA: It depends on the case. I never tell patients this is going to be 100%. If we’re talking about chronic pain in adults, I would say it’s like 80 to 90%. I think we’re understanding more about THC and know more mechanisms for that. If we’re talking about kids, I would say 50-70% of people find something that works really well and stick with it. With epilepsy and autism, we’re still trying to figure out the mechanisms. There’s so much variability in products that it’s a little bit harder.
HL: Can you talk to us a little about the costs of cannabis?
DJA: I operate as a family doctor in Canada so that means that the patients never pay anything and I’ve always been very strict on that. There’s never a charge to the patient [for the consultation]. In Canada, however, the cost of the products isn’t covered. I’ve been meeting with some of the politicians here in Manitoba to talk about, not only the cost savings for kids, but the cost savings for those who come through the revolving door of my emergency with chronic pain, PTSD, and lots of different things. I’ve been able to work with them and their emergency visits drop. So using those examples and cost analysis to promote the idea that covering cannabis could actually save a lot of money. I also pick up the phone and negotiate discounts with the licensed producers for my patients, which has a huge success rate.
We forget that just because someone doesn't have the same abilities they still want to be part of everything—however they can.
HL: Why do you believe there is such hesitancy by traditional medicine to accept cannabis?
DJA: I think it’s the unknown. In the medical system, we like things that make sense. We like things that are studied. We like things that are black and white. We like randomized control trials. And cannabis doesn’t fit into any of that. There’s a massive political backdrop that really influences people whether they think so or not. It influences a lot of our laws. There’s the argument that there’s not enough research. Well, half the doctors don’t even know that we couldn’t study it because it was illegal to study. I think education helps physicians understand it better, but there’s still a lot of older generation physicians who just basically shut the door and don’t want to learn about it.
HL: How do you balance the unknowns of cannabis with the urgency to find effective treatments?
DJA: That’s the struggle because kids like mine would have died waiting. A lot of my colleagues’ arguments are, You don’t know the long-term effects of cannabis on kids. Well, the long-term effect of seizures on kids is death or developmental issues. So when your son is seizing three to four times an hour despite medications, I’m sorry but talking about the potential non-existent risk of psychosis in my son when he’s seizing all the time is not relevant. Family after family after family that I talk to say the same thing. They understand we don’t know the long-term risk but we’re looking at the child in front of us, who has low quality of life and in some cases dying of seizures. Unless you’re a parent of a kid that’s almost died, I don’t think you get it. Or you’ve had a family member that’s failed everything, if you haven’t had that frustration of the system and having to look outside the box for an answer, it’s just really hard to understand. But I think that the time is coming when that’s not going to be acceptable because now we have so much more research happening on cannabis.
HL: What is your biggest pet peeve regarding people’s attitude towards cannabis?
DJA: A lot of times people say, Oh, well, you just use it for everything or it’s not indicated for anything. Aren’t you using a lot of things off-label? The human body is so complex; there are a lot of strategies to try to get an effect, which is what we do in traditional medicine. With cannabis, we have receptors all over our body that we’re still trying to understand and the reason it works is because it interacts with so many receptors, not just our brain or just in one organ.
HL: What has surprised you the most on your journey?
DJA: As much as I’m helping other patients, they’re also helping me. My whole journey started with trying to reach outward to help other people so that I could get through my struggles. It sounds a bit weird but I’ve realized, especially when working with families that we’re all in the same boat. The therapeutic relationship that we were building was helpful on so many levels. The families that I was dealing with were traumatized, like I was, but they didn’t have anyone and neither did I, but now we’ve found each other. I feel like my whole life I’ve always reached out and made community around me and so that was my natural response—to reach out and find people to connect with.
Somewhere inside all of us is the power to change the world.
Photo: Florence Photography
HL: Do you consume cannabis?
DJA: I do, yes. Not at work. I do use cannabis for sleep. I’ve found it such a lifesaver. You know, a low dose THC and I’ve never had a better sleep in my life. It’s really made a big difference and I find that with my patients too. I won’t say I don’t use it recreationally but usually it’s with friends or colleagues. I have quite a few friends that are also working with patients so we get to try all the new products.
HL: What are your goals for the future?
DJA: I’m just here to try to make a difference, sometimes as a physician, sometimes as a mom. I’m trying to help both traditional medicine and up-and-coming cannabis, kind of figure out how we make the two connect. What kind of models do we need to bring these two together so the patients can get what they would like and the physicians can feel comfortable. And how do we become an example in Canada. I feel other countries do look to us as a role model. You know, there are other physicians, like Dr. Evan Lewis in Canada, that work with kids as well. So trying to build bridges and a network across Canada for physicians so that these kids don’t fall through the cracks and always have somewhere to go in every province.
HL: You are working on a new film project. What can we expect?
DJA: It’s called Anything can happen: a look at cannabis in paediatric medicine. It follows my story as a physician with my son and three of my patients—one with epilepsy and two with autism. It’s coming out in 2022 and you can find out more about it at www.anythingcanhappendoc.com.
HL: Cannabis in one word?
DJA: Cannabis is life changing on so many levels. It’s been life changing for me. It’s given me a purpose in my career and obviously saved my son. Yeah, I think it’s life changing.
BIO
Dr. Jennifer Anderson is a Métis Family Physician who graduated from the University of Manitoba in 2014. She started out in a rural community doing family practice including obstetrics, ER and hospital work. In 2016, her four-year-old son with cerebral palsy from twin-to-twin transfusion syndrome started seizing uncontrollably after failing all medical options. Finding themselves in hospital 80-90% of the time, she advocated for a trial of medical cannabis for her son. Over the first year with cannabis, his seizures went from two to three an hour to two to three a month. Today, he is a healthy vibrant nine-year-old who enjoys life with his twin brother. His last hospital visit was almost three years ago.
In 2017, Dr. Anderson started seeing paediatric patients with intractable epilepsy as well as other diagnoses that had failed traditional therapies. She now operates a consult-only practice assisting other physicians in adult and paediatric medicine incorporate medical cannabis into a patient’s treatment plan. Her passion is to advocate and educate around cannabis in all age groups. She also strives to set standards of excellence in the field of cannabinoids so that patients can navigate cannabis safely with their physicians. She works with government and the educational system to incorporate cannabis into patient care and collaborates with physicians across the globe to provide support and education through various platforms.
Follow Dr. Anderson on Instagram.