Tuesday morning we took Calvin to see the neurologist. The last time we were there was nearly two and a half years ago. You may wonder, since Calvin has medically refractory epilepsy (seizures that are not completely controlled with the use of medications) why I’d keep him from seeing an epileptologist for so long. My answer is simple: in the nearly ten years since Calvin’s epilepsy diagnosis and having seen three neurologists, I’ve learned that what they do best, besides being smart, kind and compassionate, is to prescribe pharmaceuticals. And why not? There aren't many other options for kids like Calvin, the brain and epilepsy are not well understood, there is no cure, and there is a plethora of antiepileptic drugs to try. Many of the medications neurologists prescribe, however, are not clinically tested on children, yet it is common practice to prescribe them anyway, as monotherapy (one drug at a time) or as polytherapy (more than one drug at a time). In my experience, when the seizures don’t respond to a particular drug, or don’t respond adequately, neurologists typically advise increasing doses, seemingly no matter how many drugs are on board—two, three, four—even if the doses are already above what might be considered safe and effective therapeutic levels.
Here, it is prudent to underscore—what with all of the medical world's caution and skepticism over the safety of cannabis—not all antiepileptic drugs are tested for their interactions with other drugs, including other antiepileptic ones. Furthermore, some drugs are FDA approved before their long-term side effects can be discerned and, despite that, are often prescribed, simultaneously, for children. I've never heard of a drug not being prescribed because another one is on board. My sense is too that it's rare for neurologists to advise discontinuing a drug; it does happen, though perhaps after parents tell horror stories of impossible side effects and/or insist that a particular drug might not be working or, indeed, might be exacerbating or inducing new kinds of seizures. Lastly, my impression is that neurologists seem to downplay the drug side effects, a perception that I share with scores of other parents of kids with epilepsy. Perhaps this is due to their general optimism—they seem to be a hopeful lot—or perhaps their zeal. Either way, it can be a liability.
I think it must be hard, maybe impossible, for neurologists who don't know what it is like to live with a child who suffers from medically refractory epilepsy and the drug side effects, to fully understand the balance we parents juggle between the lofty goal of seizure freedom and the simple desire for decent quality of life. I wager if they spent a week—even a day—in our homes, they might come away with an entirely new perspective and a different set of strategies or goals.
Unfortunately, that isn't how things work, and Calvin has maxed out his dose on several of the ten antiepileptic pharmaceuticals he’s tried, and has gone far above the recommended therapeutic level on most of them, and suffered. He showed signs of initial liver failure from one drug, Depakote, that I questioned for its tendency to do just that, the selfsame drug which turned him into a zombie, and he has exhibited signs of adverse cognitive, behavioral, developmental, gastrointestinal, ocular, dermatologic and central nervous system side effects from every drug he's taken.
These past ten years I've made it my job to research every drug we’ve considered giving Calvin and then to research them further once he begins treatment. I wouldn’t say I have a photographic memory, but I seem to have a knack for remembering side effects, half-lives, therapeutic levels and some of the pharmacokinetic details such as Tmax (the time after administration of a drug when the maximum plasma concentration is reached). I also memorize the levels of drug in milligrams per kilogram of Calvin’s weight so that I can accurately compare his overall dose over months and years while adjusting for his weight gain. I feel I've got a good grasp on handling Calvin's treatment without always consulting a neurologist, though I am in no way recommending that other parents follow my example. Everyone must chart their own course.
Even so, Michael and I decided it might be time to check in with Calvin's neurologist and touch base since Calvin's seizures have been on the rise.
The main result of our meeting with the neurologist, besides asking him to look in to stem cell and glutathione therapies, was that, on my recommendation, we'd consider increasing Calvin’s Keppra dose if his seizures don’t subside after having recently doubled his bedtime THCA cannabis oil. It’s still too soon to tell how effective that measure will be in the long run, but since the doubling he has had isolated grand mal seizures rather than clusters, and his stint between grand mal seizures has been slightly longer. Regrettably, the past several months Calvin has been having more complex partial seizures, including yesterday and today, so I decided to increase his Keppra slightly to return it to the same mgs/kg it was one year ago, to compensate for Calvin's weight gain.
My sense is that the gradual increase in Calvin's seizures is partly due to his benzodiazepine withdrawal, which my gut tells me might be worse if not for the cannabis, though sadly there is really no way of knowing what the culprit is for sure.
We are scheduled to return to the neurologist a year from now. My hope is that by that time Calvin will be completely off of the benzodiazepine and having fewer seizures overall. From what I’ve heard, the cannabis performs better in the absence of other pharmaceuticals, specifically the benzo, clobazam, which utilizes the same liver enzyme (cytochrome P450 or CYPs) to metabolize, in essence making the benzo and the cannabis compete.
Bottom line is that my husband and I believe that the onslaught of pharmaceuticals during Calvin's brain's most important developmental years may have done more damage than the seizures themselves; no doubt the drugs have affected his behavior in most adverse ways. I just hope the side effects are reversible, but there's no guarantee because, plain and simple, nobody, not even the neurologists, really know.
Here, it is prudent to underscore—what with all of the medical world's caution and skepticism over the safety of cannabis—not all antiepileptic drugs are tested for their interactions with other drugs, including other antiepileptic ones. Furthermore, some drugs are FDA approved before their long-term side effects can be discerned and, despite that, are often prescribed, simultaneously, for children. I've never heard of a drug not being prescribed because another one is on board. My sense is too that it's rare for neurologists to advise discontinuing a drug; it does happen, though perhaps after parents tell horror stories of impossible side effects and/or insist that a particular drug might not be working or, indeed, might be exacerbating or inducing new kinds of seizures. Lastly, my impression is that neurologists seem to downplay the drug side effects, a perception that I share with scores of other parents of kids with epilepsy. Perhaps this is due to their general optimism—they seem to be a hopeful lot—or perhaps their zeal. Either way, it can be a liability.
I think it must be hard, maybe impossible, for neurologists who don't know what it is like to live with a child who suffers from medically refractory epilepsy and the drug side effects, to fully understand the balance we parents juggle between the lofty goal of seizure freedom and the simple desire for decent quality of life. I wager if they spent a week—even a day—in our homes, they might come away with an entirely new perspective and a different set of strategies or goals.
Unfortunately, that isn't how things work, and Calvin has maxed out his dose on several of the ten antiepileptic pharmaceuticals he’s tried, and has gone far above the recommended therapeutic level on most of them, and suffered. He showed signs of initial liver failure from one drug, Depakote, that I questioned for its tendency to do just that, the selfsame drug which turned him into a zombie, and he has exhibited signs of adverse cognitive, behavioral, developmental, gastrointestinal, ocular, dermatologic and central nervous system side effects from every drug he's taken.
These past ten years I've made it my job to research every drug we’ve considered giving Calvin and then to research them further once he begins treatment. I wouldn’t say I have a photographic memory, but I seem to have a knack for remembering side effects, half-lives, therapeutic levels and some of the pharmacokinetic details such as Tmax (the time after administration of a drug when the maximum plasma concentration is reached). I also memorize the levels of drug in milligrams per kilogram of Calvin’s weight so that I can accurately compare his overall dose over months and years while adjusting for his weight gain. I feel I've got a good grasp on handling Calvin's treatment without always consulting a neurologist, though I am in no way recommending that other parents follow my example. Everyone must chart their own course.
Even so, Michael and I decided it might be time to check in with Calvin's neurologist and touch base since Calvin's seizures have been on the rise.
The main result of our meeting with the neurologist, besides asking him to look in to stem cell and glutathione therapies, was that, on my recommendation, we'd consider increasing Calvin’s Keppra dose if his seizures don’t subside after having recently doubled his bedtime THCA cannabis oil. It’s still too soon to tell how effective that measure will be in the long run, but since the doubling he has had isolated grand mal seizures rather than clusters, and his stint between grand mal seizures has been slightly longer. Regrettably, the past several months Calvin has been having more complex partial seizures, including yesterday and today, so I decided to increase his Keppra slightly to return it to the same mgs/kg it was one year ago, to compensate for Calvin's weight gain.
My sense is that the gradual increase in Calvin's seizures is partly due to his benzodiazepine withdrawal, which my gut tells me might be worse if not for the cannabis, though sadly there is really no way of knowing what the culprit is for sure.
We are scheduled to return to the neurologist a year from now. My hope is that by that time Calvin will be completely off of the benzodiazepine and having fewer seizures overall. From what I’ve heard, the cannabis performs better in the absence of other pharmaceuticals, specifically the benzo, clobazam, which utilizes the same liver enzyme (cytochrome P450 or CYPs) to metabolize, in essence making the benzo and the cannabis compete.
Bottom line is that my husband and I believe that the onslaught of pharmaceuticals during Calvin's brain's most important developmental years may have done more damage than the seizures themselves; no doubt the drugs have affected his behavior in most adverse ways. I just hope the side effects are reversible, but there's no guarantee because, plain and simple, nobody, not even the neurologists, really know.
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| A few of Calvin's discarded medicine bottles. Photo by Michael Kolster |
Brilliant post, and I admire your steely restraint.
ReplyDeleteaw, shucks.
ReplyDeleteSo many amen's I can add to this... I remember during an extended ER visit the on-call neuro trying to "ease" my discomfort by telling me "sometimes kids have 200 seizures a day and that's the best quality of life they have." With all due respect, I told her through tears, that is not a quality of life, you have no idea what this is like to live with on a daily basis. I pray she never repeated that to another parent... you are so spot on, I don't doubt you have better knowledge, you've got on-the-job qualifications for sure...
ReplyDelete