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An interview with two parents that are utilizing medical cannabis in their children’s treatment.
An interview with two parents-Moriah Barnhart and Gail Rand-that are utilizing medical cannabis in their children’s treatment.
According to a recent Pew research survey conducted in September 2019 (1), two-thirds of Americans believe that cannabis should be legalized. There still seems to be a unique stigma, however, related to the use of medical cannabis for pediatric patients. For this installment of “Cannabis Crossroads,” I had the pleasure of sitting down with two parents that are utilizing medical cannabis in their children’s treatment-Moriah Barnhart and Gail Rand. These ladies have left no stone unturned when it comes to options for care and have both found cannabis to be a great resource that helps alleviate many of their children’s symptoms.
Can you please introduce yourself and tell our readers which pediatric illness your family is using medical cannabis for?
Moriah Barnhart: My name is Moriah Barnhart. My daughter, Dahlia, was diagnosed with aggressive brain cancer at the age of two. She was actually diagnosed with two types of brain cancer mixed. One of her diagnoses, anaplastic astrocytoma, is not considered curable.
Gail Rand: I’m Gail and I’m a mom to Logan, a happy 10-year-old boy. Logan was diagnosed with epilepsy at age 1, ADHD at age 2, Celiac disease at age 3, and autism at age 4. He uses medical cannabis to help with everything except Celiac disease, but our focus was always controlling his seizures.
Please describe how cannabis plays a role in your child’s treatment.
Barnhart: Dahlia has benefited from multiple different hemp and cannabis products since 2013 for everything from pain, nausea, and vomiting to skin rashes and sleep. Obviously, my great hope in the end is that it also helps cure her.
Rand: Before medical cannabis, Logan had more than 14,000 seizures. Now, Logan has been several years seizure free using tetrahydrocannabinolic acid (THCA), without any pharmaceuticals for seizure treatment. My husband extracts the raw cannabis using dry ice and suspends the kief in olive oil. Logan also takes cannabidiol (CBD) for his development, attention, behavior, and learning. When Logan went seizure free on THCA, he was able to sleep through the night for the first time ever. Although he was initially nonverbal, he has now learned to communicate, which also has a huge benefit of reducing some of his behavioral challenges. Logan’s older siblings, who are typical developing teenagers, now enjoy seeing Logan’s personality flourish, which has dramatically changed the family dynamics for the better!
Can you share details on how you first learned about medical cannabis as a treatment?
Barnhart: I had people straight away bringing me information on cannabis as a potential viable supplement for Dahlia. I specifically remember a cousin, the wife of someone in my church growing up, my sister, and my mom being sold on the idea early on. A few months into looking into cannabis for Dahlia, the CNN documentary came out, but it was talking about hemp for seizures not cannabis for cancer. So, there were really no stories on children using products with THC at the time. There were no doctors to help with dosing and there was really limited information outside of anecdotal adult stories and mice studies.
Rand: In 2012, one of my friends began using CBD to treat her son, Zaki. Her son has the same rare type of epilepsy as Logan, called myoclonic astatic epilepsy (MAE), also known as Doose Syndrome. Zaki went seizure free almost immediately. This made us sit up and take notice as Zaki and Logan always presented similarly with their seizures and reactions to medicine.
In what state is your family located and can you share some of the issues that you have experienced in acquiring quality medical cannabis?
Barnhart: We are located in Florida. First, we went to Tennessee for conventional treatment at St. Jude. Once we saw the benefits of cannabis in an illegal state, we moved to Colorado for better access. But the prices were high and tested products were limited. Even the hemp products touted on CNN’s documentary a few months earlier came with a long wait list. So, we returned home to Florida for Dahlia to be with her family and I continued to do what I needed to do to help her while working to change laws and relinquish the title of criminal. Now that we finally have a medical program in place, I would say education and cost are the most prohibitive issues. Patient and caregiver education, but also physician education. I wrote the state’s first continuing medical education (CME) program for physicians and have an inside glimpse into how devastating the lack of knowledge among our qualified healthcare providers is. Most medical programs excluded an entire receptor system from their program, and some doctors aren’t interested in learning new information. Others tout themselves as experts while spewing grave falsehoods. For parents and patients who are able to educate themselves, there is still the issue of cost. Since it’s not covered by insurance, everything from doctor’s appointments to product is out of pocket.
Rand: We live in Maryland. With other parent advocates, I was instrumental in getting the first practical medical cannabis bill passed in 2014. I also was the CFO and Patient Advocate for the first licensed grow in Maryland. Originally, we had incredible challenges getting access. CBD was very difficult to get as supply was incredibly minimal. There was a wait list of more than 5000 people for Charlotte’s Web and you had to relocate to Colorado. It continues to shock me how easy it is now to get Charlotte’s Web shipped to our door. It took several years for the program to get up and running to allow access to THCA. Now that the program has been up and running for a few years, consistent quality cannabis is much easier to find.
Can you share a little about how you determined which cannabis strains or cannabinoid profiles worked best for your child and their illness?
Barnhart: As I said previously, Dahlia has benefited from multiple different hemp and cannabis products over the years. We were able to make our own product in her name from one of the organic plants that helped her in her better times before there were so many hemp products on the market. In worse times, when she needed more THC to see relief, we went through multiple products at different doses. There’s really no one-size-fits-all in botanical medicine. A product that works for one person may not work for another. A product that works for one person at one time may not work for them as well for other symptoms or at a different time. Our bodies gain a fast tolerance to cannabis and one may need to change doses or products. It’s very rare even with conventional medicine that two children with the same diagnosis are going to see the same results from one medicine protocol, and in my experience, this is especially true with cannabis.
Rand: We tried CBD at first for Logan’s seizures but it did not have any impact on his seizures. However, we continued with the CBD as we believed it helped with his learning. Without knowing that we were trying CBD because this was several years before CBD was more widely understood, Logan’s school commented about how they believe “the lights went on in his brain.” He began to communicate and we got to see his personality for the first time. For CBD, Logan has had a lot of benefit from Charlotte’s Web. Eventually, we tried THCA at a 5 mg/day dose, which helped reduce his seizures. At 10 mg/day, he went completely seizure free. Because of the variety in the market, we have tried many different THCA strains with various terpenes and have not seen a change in the success of the treatment. Since then, he has continued to blossom in ways that we never thought possible.
Why do you feel that there is still so much stigma associated with medical pediatric cannabis use when doctors commonly prescribe children opiates, amphetamines, benzodiazepines, and so forth?
Barnhart: The first is obvious: most of us were raised on drug awareness programs that basically clumped cannabis in with drugs such as heroin and meth. As we grew older, it became obvious that cannabis was safer than everything else, even alcohol. But that didn’t light a fire to go out and change laws. As a society, we still generally held a subconscious belief that cannabis destroys brain cells and sometimes even whole lives. Most people aren’t aware that the drugs kids are offered for diagnoses ranging from epilepsy to cancer cause everything from brain damage to organ failure and even death.
We are living in a time in America where we are kept just comfortable enough not to ask too many questions. We see this in corrupt legislation every day, and it’s glaringly obvious when it comes to the field of medicine. There are so few cures despite our advances in science. But since most parents never experience the trials and tribulations of having a child suffering from a critical illness and the side effects of harsh medications-many of which are research medications that come with horrific, long-term consequences-they haven’t had to question the system as deeply. That’s why I’ve always felt it was my obligation and duty to raise awareness and education around these causes.
Rand: The medical community is slow to change unless there are double-blind placebo-controlled studies done here in the U.S. That type of research will be extremely challenging until cannabis is legalized here in the U.S. We have found Logan’s doctors to be supportive since the proof is in the results; however, it is a different matter to find someone willing to recommend medical cannabis formally. Unfortunately, there doesn’t appear to be as much of a risk-return approach to medicine like there is in business. Before he was seizure-free, Logan was prescribed benzodiazepines that weren’t even FDA approved for children. We had to work with Logan’s doctor to get them from Canada initially. They didn’t help his seizures and the side effect of the benzos was actually more seizures. We had to wean him over 2 years. We were ultimately comfortable with giving Logan cannabis because it has never killed anyone in the recorded history of mankind. And nothing else worked.
What advice can you share with other parents who are looking at utilizing medical cannabis for pediatric illness in their family?
Barnhart: I have dealt with doctors who were totally against cannabis until they saw Dahlia’s progress. I have dealt with hostile medical professionals all the way up to the highest rungs of hospital administration. But I feel very lucky that over the years, treating her medical team as my team has led to a bond and understanding that we are all just trying to save my daughter’s life. Where at all possible, forge those bonds with your child’s team. When they’re open to the use of cannabis, make sure it’s charted and keep the lines of communication open. Always, always, always check with your pharmacist that there are no drug interactions. Cannabis uses the same metabolizing enzyme as many drugs, which can make those other drugs rise to toxic levels in the body. Many of the drugs these children take are very hard on the liver, so make sure their organs are functioning properly and are able to handle extra supplements like cannabis. Learn to read test results and ensure every product you’re introducing to your child’s body is safe and contaminant-free.
Rand: I recommend that parents keep trying different routes of administration and strains with different cannabinoids or terpenes until you find one that works or have exhausted your options. We tried 96 treatment iterations of traditional seizure drugs, diets, steroids, CBD, and so on until we found THCA. This is individualized medicine and sometimes there just isn’t a formula that fits everyone. I also recommend keeping track of each strain, including the Certificate of Analysis whenever possible, and the impact on your loved one. Make your own quick and easy questionnaire that monitors the before and after impact. Due to the extensive trial and error that it could take, it’s crucial to be able to identify when something does work.
Is there anything else that you would like to share with our readers regarding medical cannabis for pediatric care?
Barnhart: Over the past seven years, the stigma of cannabis as an option for our children has greatly lessened. We still have work to do and it’s still so important to share our stories; but most importantly, do what you have to do to help your child. We are changing the world one story and one experience at a time. So, do what you need to do for your own child, and know that somewhere down the line this is going to help someone else.
Rand: For us, it was easy to see the impact of THCA as Logan’s previously violent seizures disappeared. Since it is sometimes hard to see the softer impact on medical cannabis for conditions that could include pain, behavior, attention, and so on it’s sometimes useful to get a more independent perspective. We choose not to tell his therapists and teachers until a couple weeks after changes for medications or supplement. Then when we ask how Logan is doing, we tend to get an unbiased report that helps us figure out the best solution.
Thank you both for sharing your personal stories here. One main point that I would like to close with is that, over the past few years, pediatric medical cannabis is becoming more of a science and less of an opinion. Pediatric patients deserve access to quality, lab-tested medical cannabis products and our knowledge about medical cannabis applications will continue to grow. As we increase the number of adult use programs, we must ensure that pediatric patients are not left behind.
Joshua Crossney is the columnist and editor of “Cannabis Crossroads” and a contributing editor to Cannabis Science and Technology magazine. Crossney is also the president and CEO of CSC Events. Direct correspondence to: firstname.lastname@example.org
J. Crossney, Cannabis Science and Technology 2(6), 26-27 (2019).
Editor's note: The print version of this column was an excerpt of the full interview presented here.