Written by Elizabeth Aquino in her blog a moon, worn as if it had been a shell
This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.
This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures.
I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.
I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy.
Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?
Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable?
I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.
International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months.
This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.
This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures.
I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.
I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy.
Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?
Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable?
I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.
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| photo by Michael Kolster |
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