Dear Dr. Rx:
I’ve been stewing on this for years, and it’s finally beginning to eat away at me, so I figure it is about time I write. Perhaps writing will incrementally change the status quo, perhaps not, but at the very least it will clear my conscience.
My son Calvin, who is now ten, woke up this morning at 2:30 and never went back to sleep. We changed his diaper, offered him water, which he refused, gave him something for what we thought might be a headache, and got into bed with him. Still, he thrashed and kicked and shrieked and whined. Why? Because he is in withdrawal from a benzodiazepine, namely clobazam.
He started taking this sorry drug over three years ago to quell his seizures and to help wean him off of the first benzodiazepine, clonazepam, both, as you know, relatives of Valium. Clonazepam was prescribed as a bridge drug, not intended for long-term use, yet even in the face of my relentless questioning of this treatment plan, he remained on it for three years. Prying him off of it was painful for everyone, and it took months. His seizures doubled, he stopped eating everything but yogurt and he held his antiepileptic medicine in his mouth for up to ninety minutes at a time. I’m convinced he’d forgotten how to swallow, just one of the countless side effects of benzos and their withdrawal and perhaps one that you are not aware of.
Though you don’t apprise your patients’ parents of the hazards of benzodiazepines, particularly long-term use, you regularly prescribe them for children when they are just toddlers and infants. You prescribe them after a child has failed only two antiepileptic drugs when, if you insist on drug therapy, there are at least twenty others they could try first. Regrettably, you are not alone.
You don’t believe in dietary therapy, in using food as medicine, as you say, though it can help a handful of kids who try it when nothing else has worked. You are leery of medicinal cannabis even though surely some of your patients’ development and well-being—their very lives—might be at stake without it, yet you don’t hesitate prescribing benzodiazepines, which no doubt have far worse and riskier side effects than cannabis, including death.
We’ll be weaning Calvin from his clobazam over the course of the following year, perhaps longer. During that time our little boy will be racked with headaches and nausea, dizziness, mania, mood swings, insomnia, drooling and withdrawal seizures. Luckily, the cannabis oil seems to be calming all of those symptoms some.
Perhaps you’d say that I know nothing about neurology, but I can tell you that I know my child, and I have memorized the list of side effects of too many antiepileptic drugs, and I knew about benzodiazepine withdrawal syndrome though no neurologist told me about it, and I see my child suffer side effects from ineffective drugs, and I can sense—sometimes even smell—a seizure coming, and I’m skeptical when a physician's only solution to a problem of any kind is to throw pharmaceuticals at it. You cannot deny it; they are all bitter pills.
Please open your mind, Dr. Rx, give yourself pause before you sign that next script, think outside of the pill box, for your patients’ sake. The world is full of possibilities if you simply choose to see them.
Sincerely, and with great regret,
Christy Shake
Calvin’s mom
I’ve been stewing on this for years, and it’s finally beginning to eat away at me, so I figure it is about time I write. Perhaps writing will incrementally change the status quo, perhaps not, but at the very least it will clear my conscience.
My son Calvin, who is now ten, woke up this morning at 2:30 and never went back to sleep. We changed his diaper, offered him water, which he refused, gave him something for what we thought might be a headache, and got into bed with him. Still, he thrashed and kicked and shrieked and whined. Why? Because he is in withdrawal from a benzodiazepine, namely clobazam.
He started taking this sorry drug over three years ago to quell his seizures and to help wean him off of the first benzodiazepine, clonazepam, both, as you know, relatives of Valium. Clonazepam was prescribed as a bridge drug, not intended for long-term use, yet even in the face of my relentless questioning of this treatment plan, he remained on it for three years. Prying him off of it was painful for everyone, and it took months. His seizures doubled, he stopped eating everything but yogurt and he held his antiepileptic medicine in his mouth for up to ninety minutes at a time. I’m convinced he’d forgotten how to swallow, just one of the countless side effects of benzos and their withdrawal and perhaps one that you are not aware of.
Though you don’t apprise your patients’ parents of the hazards of benzodiazepines, particularly long-term use, you regularly prescribe them for children when they are just toddlers and infants. You prescribe them after a child has failed only two antiepileptic drugs when, if you insist on drug therapy, there are at least twenty others they could try first. Regrettably, you are not alone.
You don’t believe in dietary therapy, in using food as medicine, as you say, though it can help a handful of kids who try it when nothing else has worked. You are leery of medicinal cannabis even though surely some of your patients’ development and well-being—their very lives—might be at stake without it, yet you don’t hesitate prescribing benzodiazepines, which no doubt have far worse and riskier side effects than cannabis, including death.
We’ll be weaning Calvin from his clobazam over the course of the following year, perhaps longer. During that time our little boy will be racked with headaches and nausea, dizziness, mania, mood swings, insomnia, drooling and withdrawal seizures. Luckily, the cannabis oil seems to be calming all of those symptoms some.
Perhaps you’d say that I know nothing about neurology, but I can tell you that I know my child, and I have memorized the list of side effects of too many antiepileptic drugs, and I knew about benzodiazepine withdrawal syndrome though no neurologist told me about it, and I see my child suffer side effects from ineffective drugs, and I can sense—sometimes even smell—a seizure coming, and I’m skeptical when a physician's only solution to a problem of any kind is to throw pharmaceuticals at it. You cannot deny it; they are all bitter pills.
Please open your mind, Dr. Rx, give yourself pause before you sign that next script, think outside of the pill box, for your patients’ sake. The world is full of possibilities if you simply choose to see them.
Sincerely, and with great regret,
Christy Shake
Calvin’s mom
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| photo by Michael Kolster |
I think the sorry truth is that many (most?) doctors just don't care about the quality of life of kids like Calvin, or my son. I've come to this conclusion after five years and thousands of doctor visits. And I would certainly can any doctor who doesn't "believe in" dietary therapy. Whether that's the right treatment for a particular child is of corse a question, but keto is overwhelmingly established as a best bet for intractable epilepsy. Not "believing" in it is simply wrong.
ReplyDeleteThis is perfect. And I'll add my "amen" to Anonymous above -- I've come to the conclusion myself after nineteen years, with one exception -- we found the keto diet to be equal to a "drug" in its negative side effects.
ReplyDelete