This morning I read an op-ed in the New York Times, one written by Orrin Devinsky and Daniel Friedman, both physicians at the NYU Comprehensive Epilepsy Center. As I read the article I felt my blood begin to churn and boil. The men cast aspersions on the use of medical marijuana tinctures and oils for the treatment of childhood epilepsies. They condescendingly and dubiously noted that “anecdotes of miraculous responses to marijuana treatments in children with severe epilepsy are rife on Facebook.”
The men, who I wonder (though seriously doubt) if they have children with catastrophic epilepsy, go on to say how we need scientific studies to “bear out the hopes of these desperate families” because of the “evidence that marijuana use can increase the risk of serious psychiatric disorders and long-term cognitive problems.”
Um, Hello! No doubt these same docs have regularly—and for years—been prescribing Valium, Phenobarbitol, Dilantin, Keppra, Depakote, Topomax, Clobazam and Felbatol for little children, all of which can cause some combination of psychiatric and behavioral changes, cognitive delays, even suicidal ideation, plus heinous physical side effects attacking the central nervous system, gastrointestinal tract, metabolic system, circulatory system, vision, skin and subcutaneous tissue, musculoskeletal system and respiratory system including lethal side effects such as Stevens-Johnson syndrome, liver and kidney failure and aplastic anemia. C’mon! Where is their sense of perspective? Did they forget their promise to first, do no harm?
As I continued reading, I steamed in my seat. I wondered if these MDs are getting major kickbacks from the pharmaceutical companies whose drugs they are trialing, such as Epidiolex, a new drug derived by isolating one of the cannabis plant’s compounds, cannabidiol. It wouldn’t be the first time a physician pocketed dirty money from a pharmaceutical company for pushing one of its drugs.
The men went on to mention the importance of studying the placebo response and how it is powerful in children. Dudes, meet my kid, Calvin, who can’t talk and who has extremely limited receptive capabilities. He is oblivious to the fact that the pills we give him morning, noon and night are powerful, yet largely ineffective, drugs meant to stop his seizures. What about the children whose seizures are so bad that they’ve lost the ability to eat, sit up, walk, talk—even think—and who’ve been resuscitated multiple times by their mothers? Study the placebo effect? I don’t think so, at least not for many of our kids with the most severe forms of epilepsy.
Devinsky and Friedman end their opinion by saying that, “For the long-term health of Charlotte and other patients like her, we urgently need valid data.” Did they stop to consider that kids like Charlotte, who tried and failed every pharmaceutical available, were dying before they started taking medical marijuana? How many of their patients who have gone into a coma, suffered brain damage or died as the result of a prolonged seizure while waiting for a new drug to be approved could have benefited from the use of a medical marijuana tincture? How many more children have to suffer and die because of the fear, ignorance and inaccessibility of an herbal remedy that has been in use for thousands of years?
I finished the article completely repulsed. Even in their wish to foster the study of cannabis, Devinsky and Friedman fell short of advocating for the removal of cannabis in its entirety from the list of schedule 1 drugs, instead expressing their interest only in “compounds derived from marijuana,” to be removed. How convenient.
My friend Elizabeth, whose nineteen-year-old daughter is successfully using cannabis oil to treat chronic epilepsy—when nothing else has worked—also wrote about the article in her blog. She noted how she was put off by the accompanying illustration of a bottle of “Cure All Miracle Elixir,” complete with cannabis leaf label and suspicious fumes drifting out of its spout. Sensational. Thanks a lot, Times editors.
I’d like to challenge these healers to do some more homework, open their minds instead of covering their asses, grow some cojones and actively advocate on a patient's behalf whose pharmaceuticals just aren't working. There is great significance in the reports of efficacy using medicinal cannabis to treat a multitude of conditions including pediatric epilepsy. There is plenty of scientific evidence as to its efficacy, and of its benefit over pharmaceutical options. Just look to Israel's thirty-plus years of research. I'll continue to do mine. This is what I have learned thus far:
The therapeutic compounds in cannabis are believed to act synergistically; medicinal cannabis is not a one-size-fits-all solution. What works for one person might not necessarily work for another. There are hundreds of different strains that can benefit a variety of conditions, and access to these strains is paramount.
There are no recorded deaths from overdose of cannabis, while there are tens of thousands of deaths annually from the use of prescription drugs.
Our children, and others who suffer from chronic conditions, need effective treatments immediately. It can take years—even decades—for the pharmaceutical industry to research, develop, test, FDA approve and market new drugs.
Pharmaceutical drugs always come with an extensive list of side effects, all of which are undesirable, some of which can be debilitating while others can prove lethal. Some of these side effects, such as anxiety, depression or nervous tics, are often treated with additional pharmaceuticals, and so on, in a vicious, downward spiral. Medicinal cannabis, on the other hand, particularly tinctures and oils that have been designed to be non-psychoactive, can have few mild side effects such as dry mouth and somnolence. In fact, parents who treat their children with whole-plant tinctures not only report improvement in their child’s condition but notice many positive side effects such as improved focus, attention, coordination, development, cognition, gastrointestinal health, behavior, appetite, sleep and exhibit an overall improved quality of life.
As with vitamins and minerals, our bodies absorb nutrients more completely when taken in the form of whole foods as opposed to ingesting manufactured supplements that require inactive ingredients such as binders. The same might be true of cannabis. Additionally, the costs of pharmaceuticals are often prohibitive for those who have no access to health insurance.
Cannabis is an annual, deciduous, flowering herb. Patients should be allowed to use and grow this herbal therapy rather than relying on expensive, pharmaceutical drugs derived from the plant.
I invite doctors Devinsky and Friedman to join us in our home, to witness first-hand Calvin’s five-minute seizures, his respiratory suppression, his response to his medications, his visible side effects, his developmental stagnancy. I'd like them to see the large cardboard box full of empty and half-empty medicine bottles, vials, blister-packs and syringes that have housed tens of thousands of ineffective, harmful drugs that have sent Calvin sky-high and pressed him zombie-low, that have rendered him incapable of performing the same skills he had when he was two, that have caused addiction and withdrawal seizures, worsening seizures and damage to his quality of life and to ours.
Please come and visit, Doctors. Our door is open if you dare. Perhaps you’ll have a change of heart and mind and see the need for weed.
Note to readers: I will not publish any ads, promotions or testimonials to the comments section of this blog for any cannabis or hemp products or oils, so don't bother trying.
The men, who I wonder (though seriously doubt) if they have children with catastrophic epilepsy, go on to say how we need scientific studies to “bear out the hopes of these desperate families” because of the “evidence that marijuana use can increase the risk of serious psychiatric disorders and long-term cognitive problems.”
Um, Hello! No doubt these same docs have regularly—and for years—been prescribing Valium, Phenobarbitol, Dilantin, Keppra, Depakote, Topomax, Clobazam and Felbatol for little children, all of which can cause some combination of psychiatric and behavioral changes, cognitive delays, even suicidal ideation, plus heinous physical side effects attacking the central nervous system, gastrointestinal tract, metabolic system, circulatory system, vision, skin and subcutaneous tissue, musculoskeletal system and respiratory system including lethal side effects such as Stevens-Johnson syndrome, liver and kidney failure and aplastic anemia. C’mon! Where is their sense of perspective? Did they forget their promise to first, do no harm?
As I continued reading, I steamed in my seat. I wondered if these MDs are getting major kickbacks from the pharmaceutical companies whose drugs they are trialing, such as Epidiolex, a new drug derived by isolating one of the cannabis plant’s compounds, cannabidiol. It wouldn’t be the first time a physician pocketed dirty money from a pharmaceutical company for pushing one of its drugs.
The men went on to mention the importance of studying the placebo response and how it is powerful in children. Dudes, meet my kid, Calvin, who can’t talk and who has extremely limited receptive capabilities. He is oblivious to the fact that the pills we give him morning, noon and night are powerful, yet largely ineffective, drugs meant to stop his seizures. What about the children whose seizures are so bad that they’ve lost the ability to eat, sit up, walk, talk—even think—and who’ve been resuscitated multiple times by their mothers? Study the placebo effect? I don’t think so, at least not for many of our kids with the most severe forms of epilepsy.
Devinsky and Friedman end their opinion by saying that, “For the long-term health of Charlotte and other patients like her, we urgently need valid data.” Did they stop to consider that kids like Charlotte, who tried and failed every pharmaceutical available, were dying before they started taking medical marijuana? How many of their patients who have gone into a coma, suffered brain damage or died as the result of a prolonged seizure while waiting for a new drug to be approved could have benefited from the use of a medical marijuana tincture? How many more children have to suffer and die because of the fear, ignorance and inaccessibility of an herbal remedy that has been in use for thousands of years?
I finished the article completely repulsed. Even in their wish to foster the study of cannabis, Devinsky and Friedman fell short of advocating for the removal of cannabis in its entirety from the list of schedule 1 drugs, instead expressing their interest only in “compounds derived from marijuana,” to be removed. How convenient.
My friend Elizabeth, whose nineteen-year-old daughter is successfully using cannabis oil to treat chronic epilepsy—when nothing else has worked—also wrote about the article in her blog. She noted how she was put off by the accompanying illustration of a bottle of “Cure All Miracle Elixir,” complete with cannabis leaf label and suspicious fumes drifting out of its spout. Sensational. Thanks a lot, Times editors.
I’d like to challenge these healers to do some more homework, open their minds instead of covering their asses, grow some cojones and actively advocate on a patient's behalf whose pharmaceuticals just aren't working. There is great significance in the reports of efficacy using medicinal cannabis to treat a multitude of conditions including pediatric epilepsy. There is plenty of scientific evidence as to its efficacy, and of its benefit over pharmaceutical options. Just look to Israel's thirty-plus years of research. I'll continue to do mine. This is what I have learned thus far:
The therapeutic compounds in cannabis are believed to act synergistically; medicinal cannabis is not a one-size-fits-all solution. What works for one person might not necessarily work for another. There are hundreds of different strains that can benefit a variety of conditions, and access to these strains is paramount.
There are no recorded deaths from overdose of cannabis, while there are tens of thousands of deaths annually from the use of prescription drugs.
Our children, and others who suffer from chronic conditions, need effective treatments immediately. It can take years—even decades—for the pharmaceutical industry to research, develop, test, FDA approve and market new drugs.
Pharmaceutical drugs always come with an extensive list of side effects, all of which are undesirable, some of which can be debilitating while others can prove lethal. Some of these side effects, such as anxiety, depression or nervous tics, are often treated with additional pharmaceuticals, and so on, in a vicious, downward spiral. Medicinal cannabis, on the other hand, particularly tinctures and oils that have been designed to be non-psychoactive, can have few mild side effects such as dry mouth and somnolence. In fact, parents who treat their children with whole-plant tinctures not only report improvement in their child’s condition but notice many positive side effects such as improved focus, attention, coordination, development, cognition, gastrointestinal health, behavior, appetite, sleep and exhibit an overall improved quality of life.
As with vitamins and minerals, our bodies absorb nutrients more completely when taken in the form of whole foods as opposed to ingesting manufactured supplements that require inactive ingredients such as binders. The same might be true of cannabis. Additionally, the costs of pharmaceuticals are often prohibitive for those who have no access to health insurance.
Cannabis is an annual, deciduous, flowering herb. Patients should be allowed to use and grow this herbal therapy rather than relying on expensive, pharmaceutical drugs derived from the plant.
I invite doctors Devinsky and Friedman to join us in our home, to witness first-hand Calvin’s five-minute seizures, his respiratory suppression, his response to his medications, his visible side effects, his developmental stagnancy. I'd like them to see the large cardboard box full of empty and half-empty medicine bottles, vials, blister-packs and syringes that have housed tens of thousands of ineffective, harmful drugs that have sent Calvin sky-high and pressed him zombie-low, that have rendered him incapable of performing the same skills he had when he was two, that have caused addiction and withdrawal seizures, worsening seizures and damage to his quality of life and to ours.
Please come and visit, Doctors. Our door is open if you dare. Perhaps you’ll have a change of heart and mind and see the need for weed.
Note to readers: I will not publish any ads, promotions or testimonials to the comments section of this blog for any cannabis or hemp products or oils, so don't bother trying.
Ancient cannabis drawing |
Well-designed studies should be done. They take time, however, and in the meantime it makes sense to allow patients whose care has failed to try this new medication (just as they tried all the previous ones). I am persuaded by the reports here and in Israel that I've seen that it can't harm these patients more than they've already been harmed, and may help.
ReplyDeleteAs for the writers' point about a "placebo effect", one comment after the Times article said it all...Charlotte DID have a placebo....it was all the former pharmaceutical attempts. They solved nothing, and the cannabidiol provided by the lab in Colorado cut her seizures wayyyy down.....proving it was successful for Charlotte.
What isn't sufficiently clear is the difference between the value of removing compounds from Schedule 1, and removing the whole plant from Schedule 1. That needs to be discussed further--and in depth.
It is so aggravating and beyond my comprehension how stubborn and ignorant some of these professionals really are. My friend in Ga. just told of a mother whose teenage son has catastrophic epilepsy was fighting AGAINST the legalization of medical marijuana because she feared using it would lead to him abusing it! Well for crying out loud, if you don't want him trying it then don't let him, but don't fight to deprive other kids from having potentially life saving medication!
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DeleteAlways buy the seeds from a reputable source, and grow the plant in clean surroundings, preferably outdoors in a sunny spot, yourself. Then do the extraction using alcohol.
ReplyDeletei will not publish any ads, promotions or testimonials to the comment section of this blog for any cannabis or hemp products so don't bother trying.
ReplyDelete