After a therapeutic day of gardening, I headed over to look in on Woody, my 82 year old friend and neighbor. I like to check in on him often, pilfer his candy jar, pet his cats and join him for walks since he spends most of every day alone in his house. When he answered the door he quickly ushered me in saying, “You’ll want to see this.” I followed him into his den where he’d been watching the local news; the upcoming story was going to be about medical marijuana and epilepsy.
We both sat at the edge of our seats, the television a few feet away. For six-plus minutes we watched a reporter interview my friend Susan about treating her daughter’s catastrophic epilepsy using cannabis. The interview also featured our beloved Dr. Dustin Sulak, DO, explaining his desire for cannabis to be considered much earlier in the treatment of refractory epilepsy rather than as “a last ditch effort.” Also featured was a pediatric neurologist, one who a friend soon nicknamed Doubting Thomas, explaining his misgivings about the use of cannabis to treat childhood epilepsy.
We watched the segment intently, and every so often I’d erupt shouting, “Awesome!” or “Dumbass,” or “What the fuck?” as if watching some sort of sporting event. My eyes stung and welled up with emotion seeing a video of Cyndimae seizing, then hearing her ask her mother to hold her. I'd met sweet Cyndimae and her mom a few months back during a stint of mostly seizure-free days.
I came away with a lot of respect for the compassionate reporter and her news organization. It was one of the most comprehensive segments I’ve seen thus far about cannabis and epilepsy, and I’ve seen scores of them. However, not unlike my friend and fellow blogger Elizabeth, whose daughter’s epilepsy is being treated successfully with cannabis oil, most of what I wanted to do was to rant. Yes, rant. Why? Because of assertions like these streaming from the mouths of countless ill-informed, shortsighted pediatric neurologists:
“What are the effects of marijuana—whether it’s a cannabinoid or THC—on the developing brain, right? And you have to weigh that risk with what’s the risk of the seizures.”
First, THC (tetrahydrocannabinol) IS a cannabinoid, and if some neurologists offer an opinion about medical marijuana, they should for damn sure have their facts straight. Second, why is it that in no op-ed, no newscast, no TV documentary, no newspaper feature, no consulting neurologist discusses the risks of antiepileptic pharmaceuticals on the developing brain? Why, dammit? These neurologists declare their grave concern about the safety and efficacy of cannabis, an herbal remedy in use for millennia, yet they fail to mention the cognitive impairments caused by drugs such as benzodiazepines—the memory problems, the sleep disturbances, the behavioral side effects, weight loss, mood swings, respiratory arrest, depression, suicidal ideation, addiction, withdrawal and significant developmental deficits resulting from their use—and that’s just a sampling of the side effects of one class of antiepileptic drugs which these neurologists blithely prescribe for children, even infants.
What if it were their child having hundreds of seizures monthly, weekly, daily, turning blue and convulsing, breaking teeth and gashing their forehead during seizures? What if it were their child whose seizures were unresponsive to pharmaceuticals yet still suffered from their side effects? What if it were their child who spent days in the hospital, who lost abilities to seizures and pharmaceuticals, who had to be repeatedly resuscitated, intubated, coma induced, whose doctor said that there was nothing more that could be done and to go home and prepare for that child's death? I wonder if they ask these questions of themselves and, if so, and if they are being frank with the journalists then how, as a parent who'd do anything for their child, in their heart of hearts, can they justify their stance?
But it isn’t their child and it's likely that they don’t understand cannabis and perhaps they trust the negative propaganda or are paralyzed by fear and are listening to ignorant claims and repeating the same baseless arguments and covering their asses having not done the research and they don't admit their naivete and they claim to know so they mislead the public and they label successes stories as purely anecdotal and they sit on their hands and they fail their patients and they watch, from a safe distance, families splinter and children suffer and seize, decline and die.
But it's the most courageous of them, the smartest, keenest, most curious and compassionate ones, who see the success stories for what they are—successes—and then recognize that things need to change and understand that for things to change some people have to question authority, have to take risks, have to buck the status quo, have to believe in something more than just randomized double-blind placebo-based trials, have to put trust in human experience as real evidence, then choose to do what is right as opposed to what is sanctioned.
Thankfully, and though they might be in the minority, we've got a few of them here in Maine.
To watch the news segment click here.
We both sat at the edge of our seats, the television a few feet away. For six-plus minutes we watched a reporter interview my friend Susan about treating her daughter’s catastrophic epilepsy using cannabis. The interview also featured our beloved Dr. Dustin Sulak, DO, explaining his desire for cannabis to be considered much earlier in the treatment of refractory epilepsy rather than as “a last ditch effort.” Also featured was a pediatric neurologist, one who a friend soon nicknamed Doubting Thomas, explaining his misgivings about the use of cannabis to treat childhood epilepsy.
We watched the segment intently, and every so often I’d erupt shouting, “Awesome!” or “Dumbass,” or “What the fuck?” as if watching some sort of sporting event. My eyes stung and welled up with emotion seeing a video of Cyndimae seizing, then hearing her ask her mother to hold her. I'd met sweet Cyndimae and her mom a few months back during a stint of mostly seizure-free days.
I came away with a lot of respect for the compassionate reporter and her news organization. It was one of the most comprehensive segments I’ve seen thus far about cannabis and epilepsy, and I’ve seen scores of them. However, not unlike my friend and fellow blogger Elizabeth, whose daughter’s epilepsy is being treated successfully with cannabis oil, most of what I wanted to do was to rant. Yes, rant. Why? Because of assertions like these streaming from the mouths of countless ill-informed, shortsighted pediatric neurologists:
“What are the effects of marijuana—whether it’s a cannabinoid or THC—on the developing brain, right? And you have to weigh that risk with what’s the risk of the seizures.”
First, THC (tetrahydrocannabinol) IS a cannabinoid, and if some neurologists offer an opinion about medical marijuana, they should for damn sure have their facts straight. Second, why is it that in no op-ed, no newscast, no TV documentary, no newspaper feature, no consulting neurologist discusses the risks of antiepileptic pharmaceuticals on the developing brain? Why, dammit? These neurologists declare their grave concern about the safety and efficacy of cannabis, an herbal remedy in use for millennia, yet they fail to mention the cognitive impairments caused by drugs such as benzodiazepines—the memory problems, the sleep disturbances, the behavioral side effects, weight loss, mood swings, respiratory arrest, depression, suicidal ideation, addiction, withdrawal and significant developmental deficits resulting from their use—and that’s just a sampling of the side effects of one class of antiepileptic drugs which these neurologists blithely prescribe for children, even infants.
What if it were their child having hundreds of seizures monthly, weekly, daily, turning blue and convulsing, breaking teeth and gashing their forehead during seizures? What if it were their child whose seizures were unresponsive to pharmaceuticals yet still suffered from their side effects? What if it were their child who spent days in the hospital, who lost abilities to seizures and pharmaceuticals, who had to be repeatedly resuscitated, intubated, coma induced, whose doctor said that there was nothing more that could be done and to go home and prepare for that child's death? I wonder if they ask these questions of themselves and, if so, and if they are being frank with the journalists then how, as a parent who'd do anything for their child, in their heart of hearts, can they justify their stance?
But it isn’t their child and it's likely that they don’t understand cannabis and perhaps they trust the negative propaganda or are paralyzed by fear and are listening to ignorant claims and repeating the same baseless arguments and covering their asses having not done the research and they don't admit their naivete and they claim to know so they mislead the public and they label successes stories as purely anecdotal and they sit on their hands and they fail their patients and they watch, from a safe distance, families splinter and children suffer and seize, decline and die.
But it's the most courageous of them, the smartest, keenest, most curious and compassionate ones, who see the success stories for what they are—successes—and then recognize that things need to change and understand that for things to change some people have to question authority, have to take risks, have to buck the status quo, have to believe in something more than just randomized double-blind placebo-based trials, have to put trust in human experience as real evidence, then choose to do what is right as opposed to what is sanctioned.
Thankfully, and though they might be in the minority, we've got a few of them here in Maine.
To watch the news segment click here.
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| Cyndimae and her mother, Susan |
That news segment was awesome. Thank you.
ReplyDeleteI love you guys....honestly, I really do. Thanks for being you in case I hadn't mentioned it before.
ReplyDeleteI'm worn out, Christy, and grateful for you picking up the rant just in the nick of time.
ReplyDelete