The speed at which information can be gleaned astounds me. A little over a year ago I first began comprehensive research into medical marijuana for the treatment of epilepsy. Subsequently, I asked Calvin’s neurologist whether she thought we should consider trying it for Calvin since ten antiepileptic drugs and two dietary treatments had failed him. She dismissed the idea citing that there was no hard and fast evidence proving its efficacy and that it remained illegal at the federal level. Less than six months later she was testifying before the Massachusetts Department of Public Health on the benefits of medical marijuana for treating medically refractory epilepsy.
Several months after our visit with her, we took Calvin to see a new neurologist in Maine. When I broached the subject of medicinal cannabis, he too dismissed the idea, citing similar reasons, that there were no double-blind placebo studies proving its efficacy. Cynically, he added that if he were to prescribe medical marijuana then everyone and their uncle would be coming in for a prescription. To promote the green treatment option, I even asked a dear friend, who was bringing her disabled son in to see the neurologist later that week, to press him on the idea as well.
Calvin’s pediatrician, on the other hand, was all ears. She and her nurse practitioner sifted through my copious emails on the subject of medicinal cannabis. I forwarded TED talks and weed documentaries and testimonial videos and newspaper articles and surveys, all of which showed compelling evidence that medical marijuana works to help control seizures in children with medically refractory epilepsy while causing little to no side effects besides, perhaps, drowsiness. These anecdotes also described improvements, not only in seizure frequency and severity, but in behavior, appetite, focus, clarity, sleep and coordination. I hooked up Calvin’s pediatrician with a local DO who regularly prescribes medical marijuana, and who gladly imparted his knowledge. I got Josh Stanley’s email, the man behind the successful strain of high CBD (cannabidiol) cannabis, Charlotte’s Web, named after the child who has had near miraculous results from its use, and I gave it to Calvin’s doctor. The two of them corresponded. She spoke with Calvin’s neurologist on several occasions hoping to persuade him to endorse the treatment for Calvin. He’d since received Calvin's former neurologist's testimony on the subject and he decided to sign a letter of recommendation for our son.
During the next several months and into autumn, I read and researched and networked online trying to find a high CBD strain of medical marijuana in Maine or in a neighboring state. A friend recommended a local organic grower willing to grow and tincture for us. I’ve spoken with dispensaries and doctors and growers and caregivers. In the past couple of weeks I’ve learned that a non-reactive (non-psychoactive) medicinal cannabis tincture rich in CBD but not necessarily low in THCa (preserved in its acid form by not heating) can be beneficial to patients with epilepsy. I’ve connected with these compassionate caregivers and have exchanged emails and phone calls hoping to understand their process of tincturing, which according to them renders effective results for patients with medically refractory epilepsy while—not unlike the Charlotte's Web growers purport—claiming to be non-psychoactive. I introduced our potential grower with the experts in this particular field of tincturing, hoping that they can speak to each other this week and perhaps get the flower into tincturing very soon since the strain, one called Cannatonic, is ripe for harvest at our grower's location.
For now, I am still waiting for my caregiver license and Calvin’s patient card to come back in the mail from DHHS. Hopefully, I’ll be visiting the grower to see his operation soon. Local labs where the strains and tinctures can be tested for content will soon be up and running and I am expecting to see some sort of breakdown of possible costs from the grower when I speak to him next.
All of this has been a big undertaking, sprinkled with thousands of Facebook posts from anxious parents in similar situations thirsting for information, an equal number of comments advising the best methods, time spent meeting with other moms and spreading the word, interviews with journalists and photo ops not to mention writing the blog and the day-to-day care of a child with a chronic illness who can’t do anything for himself.
It all reminds me of a blog post I saw recently, discussing the question that stay-at-home moms often get from other women which is, "What do you Do all day long?" For now, I am gleaning green, sisters, gleaning green.
Several months after our visit with her, we took Calvin to see a new neurologist in Maine. When I broached the subject of medicinal cannabis, he too dismissed the idea, citing similar reasons, that there were no double-blind placebo studies proving its efficacy. Cynically, he added that if he were to prescribe medical marijuana then everyone and their uncle would be coming in for a prescription. To promote the green treatment option, I even asked a dear friend, who was bringing her disabled son in to see the neurologist later that week, to press him on the idea as well.
Calvin’s pediatrician, on the other hand, was all ears. She and her nurse practitioner sifted through my copious emails on the subject of medicinal cannabis. I forwarded TED talks and weed documentaries and testimonial videos and newspaper articles and surveys, all of which showed compelling evidence that medical marijuana works to help control seizures in children with medically refractory epilepsy while causing little to no side effects besides, perhaps, drowsiness. These anecdotes also described improvements, not only in seizure frequency and severity, but in behavior, appetite, focus, clarity, sleep and coordination. I hooked up Calvin’s pediatrician with a local DO who regularly prescribes medical marijuana, and who gladly imparted his knowledge. I got Josh Stanley’s email, the man behind the successful strain of high CBD (cannabidiol) cannabis, Charlotte’s Web, named after the child who has had near miraculous results from its use, and I gave it to Calvin’s doctor. The two of them corresponded. She spoke with Calvin’s neurologist on several occasions hoping to persuade him to endorse the treatment for Calvin. He’d since received Calvin's former neurologist's testimony on the subject and he decided to sign a letter of recommendation for our son.
During the next several months and into autumn, I read and researched and networked online trying to find a high CBD strain of medical marijuana in Maine or in a neighboring state. A friend recommended a local organic grower willing to grow and tincture for us. I’ve spoken with dispensaries and doctors and growers and caregivers. In the past couple of weeks I’ve learned that a non-reactive (non-psychoactive) medicinal cannabis tincture rich in CBD but not necessarily low in THCa (preserved in its acid form by not heating) can be beneficial to patients with epilepsy. I’ve connected with these compassionate caregivers and have exchanged emails and phone calls hoping to understand their process of tincturing, which according to them renders effective results for patients with medically refractory epilepsy while—not unlike the Charlotte's Web growers purport—claiming to be non-psychoactive. I introduced our potential grower with the experts in this particular field of tincturing, hoping that they can speak to each other this week and perhaps get the flower into tincturing very soon since the strain, one called Cannatonic, is ripe for harvest at our grower's location.
For now, I am still waiting for my caregiver license and Calvin’s patient card to come back in the mail from DHHS. Hopefully, I’ll be visiting the grower to see his operation soon. Local labs where the strains and tinctures can be tested for content will soon be up and running and I am expecting to see some sort of breakdown of possible costs from the grower when I speak to him next.
All of this has been a big undertaking, sprinkled with thousands of Facebook posts from anxious parents in similar situations thirsting for information, an equal number of comments advising the best methods, time spent meeting with other moms and spreading the word, interviews with journalists and photo ops not to mention writing the blog and the day-to-day care of a child with a chronic illness who can’t do anything for himself.
It all reminds me of a blog post I saw recently, discussing the question that stay-at-home moms often get from other women which is, "What do you Do all day long?" For now, I am gleaning green, sisters, gleaning green.
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| photo by Michael Kolster |
Oh I hear you. I don't think I've researched as much and am sometimes easily overwhelmed but this path makes sense to me. So glad to have you and others paving the way. Heather
ReplyDeleteYou blow me away with the care with which you have explored this option, Christy. By now you should have earned an MM.md. The hard work is an extension of all the hard work you've been doing for 9 years, and this time may make a change. We will be sending positive vibes galore through the air....
ReplyDeleteDear Christy, Last night I had a dream that I wrote you this message and when I woke up I realized it was time to actually write you this message. I met your son in his school over two years ago as part of my schooling as an occupational therapist. I have been devoutly reading your blog everyday since. I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. What I have to offer isn't much, I have a brain that thinks about the meaning of things. I think about what it really means to be disabled. I think a lot about the relationships in our lives and what love makes us capable of. I think about what it means to be a parent. I think about death and grief and love. I think a lot about Calvin. I would be honored to correspond with you more. I'd love to join you on your journey, in whatever way that seems right. Please feel free to contact me at kailaruth.smith@gmail.com. If not be assured that I am here, listening.
ReplyDelete