For Two Maine Families, Whole Plant Medical Cannabis Makes a Difference
Raegan, 15, enjoys music, animals, and cartoons. She’s a snuggler, a joyful child who often bestows her beaming smile on her family, friends, and teachers.
Sara, 23, enjoys being outdoors, especially bird-watching, and is a caring mother to her two Boston terriers and her beloved Teletubbies. Like Raegan, she also loves music, especially drumming and piano.
These two young women have other commonalities. Both live in Maine; Raegan all her life, Sara since April of this year. Each suffers from persistent seizures, due to different severely debilitating conditions.
And each has made significant improvements within the last year, since she began using medical cannabis.
COMING AROUND TO MEDICAL CANNABIS
Raegan Storck was born with a rare brain malformation called microlissencephaly with agenesis of the corpus callosum. Developmentally, she is much like a six-month old baby. She uses a wheelchair, eats via a gastrointestinal tube, and is unable to walk or talk. The condition also causes severe seizures, which qualifies Raegan to use medical cannabis in the state of Maine.
Deb Snyder and Mark Storck, Raegan’s parents, had to resolve their own differing opinions about medical cannabis before trying it as a therapy for their daughter. While Storck embraced the idea, throwing himself into what he calls “a mission of cannabis education,” Snyder admits to being the hesitant partner: “I didn’t want to experiment on her, or have it in my house… I held a great bias against any illegal substance.”
Storck’s extensive research efforts and Snyder’s resistance “became a constant argument between us,” says Snyder. But Storck’s persistence, and a friendly and forthcoming “canna-community” in Maine, eventually convinced Snyder to pursue cannabis as a therapy for Raegan, “as long as her entire medical team endorsed it. Which they did.”
BARRIERS TO ACCESS
Born in Wayne, New Jersey, Sara was developmentally normal until her 7th month, according to her mother, Shawnea Estrella. Hours after she received a typical childhood vaccine, however, Sara began experiencing strong seizures—about 20 the first day.
Eventually she was diagnosed with encephalitis, and the family explored every medical option to stop the seizures and restore Sara’s healthy development, including invasive implants and surgeries. At age 5, Sara had brain surgery to sever her corpus callosum. While this stopped the seizures for about a year, she lost her speech.
“I didn’t hear ‘mama’ after that,” says Estrella.
A friend suggested Estrella try Sara on a low dose of medical cannabis in coconut oil, and the results were promising. For a while, she navigated New Jersey’s fledgling medical cannabis program, but found herself spending over $1,000 per month just for the medicine; strict state requirements for follow-up doctor visits and mandatory registration fees added another $1000-plus per year.
Earlier this year, Sara and her family moved to Maine, drawn here by a medical cannabis program that they found less expensive and easier to navigate than New Jersey’s.
SUPPORT IS AVAILABLE
According to Kristine Binette, Maine Field Services Coordinator for the Epilepsy Foundation – New England, the challenges faced by Raegan, Sara and their families are common among those considering this treatment option.
The early hurdles are bureaucratic and logistic, she says. Difficulties include “just knowing the law, the options; and then having the whole medical team agree, and getting a certification. Plus the additional doctor’s approval for pediatric patients.”
Beyond that, “It’s then knowing where to go to get it. And, obviously, the price, since this is still entirely out-of-pocket.”
As a resource for Maine families living with a seizure disorder, Binette speaks with about two families a month who are curious to learn about medical cannabis specifically. She assists them in finding reliable information about Maine’s medical cannabis program, and connects them with support groups, including an online group run by EFNE.
The Epilepsy Foundation supports “the rights of patients and families to access physician directed care, including medical marijuana” in several ways:
- By calling on the Drug Enforcement Administration to down-schedule cannabis to allow more research;
- Working to make medical cannabis available to epilepsy patients in states where it is not yet legal, and supporting the inclusion or addition of epilepsy/seizure disorders in state laws where medical cannabis is legal, including for doctor-supervised pediatric treatment; and
- Supporting research on multiple forms of cannabis and seizures.
“The Epilepsy Foundation is not just saying, ‘Yes we endorse this treatment option and that’s it’,” Binette says. “We are out there in the states, actively helping improve families’ access to and understanding of this medicine.”
FINDING THE RIGHT FORMULATION
Raegan and Sara use different forms of cannabis. Raegan eats via a GI tube, so her treatment comes in a very low dose of cannabis oil (21 mg/day) that is rubbed on her gums three times a day. For Sara, medical cannabis takes the form of a daily cookie made with cannabis-infused butter.
Estrella uses a dispensary, and has learned to make the butter and cookies herself; Snyder and Storck currently work with an individual caregiver, and are in the process of growing a harvest of plants sufficient to make Raegan’s oil at home. (Snyder remarks that this also comes with “a large price tag and steep learning curve”—because this medicine is not covered by insurance, both families have struggled to cover the expenses required to treat their daughters.)
Both Raegan and Sara use whole plant medicine, which contain the psychoactive therapeutic compound delta-9 tetrahydrocannabinol (THC) as well as dozens of non-psychoactive compounds found in cannabis. One of those non-psychoactive molecules, cannabidiol (CBD), gained national attention after CNN aired Dr. Sanjay Gupta’s documentary, “Weed,” in 2013*. Since then, several states have passed largely-symbolic “CBD-only” laws which limit the amount of THC in a preparation to well under 1%. (Maine is not one of these states.)
Raegan’s oil is two parts CBD to one part THC; Sara’s cookies are made with strains high in CBD but relatively low in THC. For each young woman, THC appears to be a necessary part of their medicine, despite its mild psychoactivity.
Neither Raegan nor Sara is able to provide reliable verbal feedback about how their whole plant cannabis treatments make them feel. Therefore, the girls’ parents, physicians and therapists worked together to develop a treatment plan emphasizing CBD but including THC. They use low doses, and observe the girls closely for mood and behavioral changes. Thus far, neither family reports any negative side effects from whole plant medical cannabis.
“The plant itself knows best,” says Snyder. “We think it’s unfortunate that (“CBD-only”) states are underestimating the benefits of whole plant therapy.”
LIFE WITH MEDICAL CANNABIS
Estrella, Snyder and Storck all agree that they have seen remarkable improvements in their daughters’ quality of life since they began using whole plant medical cannabis.
For Raegan, “A bad day would often involve hundreds of seizures and muscle tone so tight” that she would be “twisted up” on her bed, says Snyder. Her parents estimate that her seizures have been reduced by about 85%–from hundreds per day to only a few. “We have been able to take her off Keppra. Her muscle tightness is also vastly improved, allowing her to participate in daily living with greater comfort and less pain.”
Whereas Sara used to have two to four severe seizures per day, she currently goes as long as four or five days without any. She has reduced her Depakote dose by 2/3rds, and no longer requires thyroid medication to maintain a healthy weight.
Estrella has one regret about pursuing cannabis therapies for Sara: “What’s hard for me is, I wish it would have been available years ago. The medications she’s been on, they themselves have done a lot of damage.”
All three parents and Binette of EFNE encourage those who are skeptical of the potential of whole-plant cannabis medicines to do their research, and be open-minded about the possibilities.
Snyder, who at first doubted the wisdom of trying medical cannabis for Raegan, says, “It’s healthy to be skeptical, to a point. But not if your rigidity and resistance keeps you from discovering powerful truths… We were able to overcome any bias about cannabis, our fears of it. We hope others can, too.”
Estrella says that medical cannabis has “made a huge improvement in Sara’s quality of life—she’s more engaged.”
“We were out one day (weeks after Sara started using medical cannabis), and she looked at us and said, “Home,” Estrella recalls, her voice warming with the memory. “I said, ‘What?’ ‘Home.’ I said, ‘Okay, we’re going home!’”
It had been years since Sara had spoken.
NOTES
*Dr. Gupta has produced three cannabis documentaries, which are available on YouTube: Weed, Weed 2 (2014), and Weed 3 (2015).
Special thanks to Kristine Binette, Shawnae and Sara Estrella, and to Deb Snyder, Mark Storck, and Raegan Storck for sharing their stories and pictures for this article.
SIDEBAR
In Maine, minor patients with a qualifying condition are required to have their medical certification reviewed by a second physician appointed by program regulators at DHHS. Incapacitated adult patients like Sara must have a legal guardian to select products and manage dosing and storage for them.
According to DLRS records, as of July 27 there were about 60 approved pediatric users of medical cannabis (under age 18) in Maine.
The Epilepsy Foundation estimates that 1 in 26 people will develop epilepsy at some point over their lifetime. Learn more and find support at http://www.epilepsy.com/new-england
Becky DeKeuster, M.Ed is a founder and the current Director of Community & Education of the Wellness Connection of Maine, a not-for-profit mutual benefit corporation which operates four of Maine’s eight state-licensed and regulated medical cannabis dispensaries. For more information, visit www.mainewellness.org,or email info@mainewellness.org.
ELM™ | Maine
