The objection you'll hear from many about using medical marijuana to treat children with epilepsy is that there haven't been adequate trials and studies to prove its efficacy (effectiveness) and safety. Therefore, the argument goes, it shouldn't be used. Instead, the advice goes, doctors (and parents) who are treating children with epilepsy should stick to the tried and true anti-epileptic drugs (AED's) because they've already been trialed, studied extensively, and proven safe in children. After all, especially when it comes to children, better to be safe than sorry; children shouldn't be lab rats.
On its surface this argument seems reasonable and perhaps even prudent. But is it?
My response includes two points:
First Point:
There's something very perplexing about noting a dearth of studies about a substance which--because of it's classification as a US Federal Schedule I Drug (a dangerous drug with no medical value)--cannot legally be trialed and studied.
Think about that for a moment....
Marijuana's medical benefit can't be studied because it's already classified as having no medical benefit. Why does it have no medical benefit? Because there are no studies. Why are there no studies? Because it's against the law to study it. Why is it against the law to study it? Because it has no medical benefit. Hmmm....
But, because some fair-minded government officials (perhaps under pressure from those wanting to solve medical problems)--have begun to realize what a silly catch-22 situation this is, some doctors and researchers have, in the last few years, been granted special permission to possess and use marijuana for medical trials and studies-- in order to see whether it is, in fact, efficacious and safe.
And, not surprisingly, the very first results of those studies have been encouraging. Very encouraging.
The truth is that research on medical marijuana's efficacy and safety will continue to be frustratingly slow until it's Federally rescheduled. And rescheduling, of course, takes medical studies.... It's a chicken and egg thing.
Though objective evidence is currently sparse, anecdotal evidence isn't. It's there and growing, especially now that half of US states have medical marijuana laws (and the Feds are winking at its compassionate use).
Indeed, it's because of this anecdotal evidence that the Feds are winking....and much needed research has begun. And so those objections about using something that hasn't been adequately studied, however unfair, will soon be falling by the wayside.
And now, getting back to our original question...
Second Point:
This has to do treating children with drugs that haven't been adequately trialed, studied, and tested-- and specifically found safe for children. And the objection to using the epileptic child as a lab rat for drug testing.
The idea that the situation with medical marijuana--because of the dearth of studies about its efficacy and especially, its safety--is somehow different from that of conventional anti-epileptic drug's (AED) is something that many parents of children with epilepsy, and maybe even many neurologists, would dispute.
One of the first--and most enduring--things I learned about epilepsy (from hanging around online epilepsy support groups, where one gets the benefit of many people's experiences--and firsthand as the parent of a child with epilepsy) is that the treatment of epilepsy is less a well-developed science than it is an art. And that art is practiced through the process of trial and error--of AED's.
For some kids--especially those who end up diagnosed with intractable epilepsy, epilepsy is a series of many trials (in more than one sense of the word) and often unfortunately, nearly as many errors. It is no one's fault. It's just the way things are right now.
The truth is this: medical science doesn't understand as much about epilepsy as you might assume that it does.....and so epilepsy remains very difficult to treat.
As the above quote from a medical study states, medical science doesn't seem to understand why seizures occur--or what causes them.
As a fever-reducer is to a fever, so an anti-epileptic drug is to epilepsy. Just as a fever is a symptom of an underlying problem rather than the problem itself (and we know that fevers are caused by many different underlying problems, some of which will resolve on their own over time and some of which won't resolve without treatment, and will in fact get worse without treatment), so seizures may well turn out to be a symptom of many different underlying problems (that will or won't resolve on their own over time). Just as treating a fever with a fever reducer (though necessary) doesn't solve the underlying problem until the cause is addressed (or naturally runs its course), so treating seizures with anti-epileptic drugs (though necessary) may do nothing to solve the underlying problem until the cause of the seizures is addressed.
As we know from anecdotal experience, with fevers, the more serious the underlying problem, the more difficult the fever is to quell. Right now, except in a very few cases, medical science isn't trying to diagnose the underlying problem (the root cause of seizures) in individual cases of epilepsy; instead it only treats the symptoms of those problems: seizures. And just like with fevers, with seizures it may be that in many cases you won't really succeed in stopping the seizures until you understand enough to first, find, diagnose, and then treat the underlying condition (the cause). In fact, the differences in responsiveness to AED's may be not only be due to individual body response but also largely be due to the differences in the underlying causes of epilepsy--the responsiveness and pervasiveness of the underlying pathologies that are, in fact, causing the seizures in the first place.
When you begin reading about epilepsy you begin to realize that the epilepsy is still a big mystery. And if seizures are a big mystery,then so too the drugs used to treat them.. Medical science doesn't really understand how and why anti-epileptic drugs work when they work; nor does it understand why AED's don't work when they don't work.
Every person is an individual, every case of epilepsy different. Currently there is no way to predict how an individual child will react to an individual anti-epileptic drug (AED). Although genetic testing may hold promise in the long run, currently there is no pharmacogenomic (using genetics to determine drug reactions) protocol within epilepsy. So once again there is no choice but trial and error--making your child into a lab rat. Or to mix metaphors,it's like shooting in the dark at unknown targets using guns that are chosen by the type of target you're shooting at.
And so it's not surprising that you get different responses. Anecdotally speaking, you begin to observe that the very same AED can be a nightmare for one child and a miracle for another.
To some degree this makes perfect sense. With such low efficacy rates for individual drugs, with individual variation as to the underlying cause of epilepsy, and with differences of individual brain/body response, trial and error becomes the only way--at least right now--to find an effective treatment for an individual case of epilepsy.
When treating seizures, at the outset doctors attempt to classify a child's seizure type according to descriptions of his/her seizures (because there are many different kinds of seizures, not just convulsive ones), EEG's, and video EEG's. This classification of seizures is important because doctors know that certain AED's help eliminate certain kinds of seizures and can exacerbate certain other kinds of seizures. Doctors then begin working their way through a list of anti-epileptic drugs for that seizure type. The first line, newer generation, safer, lower side-effect drugs are trialed first; and after that, if needed, the others on the list. The further down the list of appropriate anti-epileptic drugs you go, the harsher, generally older, and riskier--with more serious side effects and more black box warnings (the most serious drug warning--involving risk of serious injury or death)--the drugs get. And you may be surprised to know that many--if not most--of these drugs are not approved for use in children. They're not approved for children because most haven't been studied in children. Except anecdotally. (See how similar the situation is to that of medical marijuana?).
In essence, when you have a child with epilepsy your child becomes a guinea pig, an open, active science experiment. You try this drug and see what happens; you try that drug and see what happens....and this process is repeated over and over again until SOMETHING works. Or nothing does.
When it comes to trialing drugs, it turns out that the law of diminishing returns governs. The first anti-epileptic drug trial brings seizure freedom for about 49% of children, the second drug for an additional 13%, and the third drug trial for yet another 4%. Once a child has failed two or three appropriately chosen AED's (that is, the drug has failed to stop the child's seizures), his/her epilepsy is classified as intractable...aka drug resistant...aka refractory. And if you want to be depressed, consider this: it's estimated that about one third of epilepsy patients (30-40%) are refractory. That amounts to an estimated 500,000 children in the US alone. Half a million children who are, ipso facto, lab rats.
After two or three failed AED trials, the likelihood that an as-yet-untried drug or drug combination will work becomes very small. And in fact, with each subsequent drug trial failure. the likelihood that any drug or any combination of drugs (because at some point doctors begin prescribing multiple drugs at the same time) will work, diminishes further.
What is to be done? Well, so long as seizures are still happening, there is nothing to do but to move forward and continue to trial drugs and groups of drugs, hoping that a drug or combination of drugs will eventually work--if not to bring seizure freedom, then at least to reduce seizures and improve quality of life. Even if drugs don't stop seizures, they usually reduce the number and severity of seizures. And, of course, these days, at some point other things are put on the treatment table. Things like brain surgery; a VNS (vagus nerve stimulator) implant; medical diets for epilepsy such as the Ketogenic, MAD, or LGIT; and.....medical marijuana.
Epileptologists tend to be on the cutting edge.. While other doctors may be conservative and many tend to shy away from new drugs until they've proven both efficacious and safe over the course of time, Epileptologists tend to be willing to be on the cutting edge, prescribing new drugs, prescribing drugs off label, etc. This is because of the way epilepsy is. Up to a third of kids with epilepsy are in a situation where they need a miracle. They need a new hope. They need a new drug because the old ones, the existing ones, have been tried and didn't work. Epileptologists' patients with intractable epilepsy need relief. These doctors are already prescribing dangerous drugs with severe side effects. Or they are contemplating recommending that their patients undergo work-ups to determine whether parts of their brains should be cut out. Or epileptologists are contemplating recommending that their patients go on extreme diets like the ketogenic diet that tricks the body into believing that the person is starving to force it to burn fat (supplied by the diet) instead of carbohydrates (which are severely limited). Any diet whose mainstays are whipped cream, bacon, and butter can be counted as extreme--and can, in fact, be life threatening or fatal if not properly monitored.. Relief from the seizures of intractable epilepsy demands extreme measures. Treating epilepsy is not for the conservative nor for the faint of heart.
So you see, a child with drug resistant epilepsy is a Guinea pig. An active, ongoing science experiment. Or as our daughter Awesome--who has intractable epilepsy--prefers to put it, a lab rat.
This is the context in which one needs to understand the push for legalizing medical marijuana and the push that parents of children with epilepsy make for the opportunity to be able to try medical marijuana for their children. It's not that we parents of kids with epilepsy or intractable epilepsy relish trying new drugs for which there are few official efficacy and safety studies and a dearth of studies about these drugs' effects on a child's developing brain and on the long term consequences of their use. It's just that we've already been doing exactly this. But with prescription drugs. Many of which are, in fact, known to be dangerous. We've been doing exactly this with prescription drugs not approved for use in children under 17--because there have been no studies in children under 17. With drugs whose effects on a developing brain are not known. With drugs for whom there is no data on long term use risks. With drugs that come with black box warnings (the strongest FDA warning, reserved for drugs with dangerous and even potentially fatal side-effects) because they are known to cause Stevens Johnson Syndrome, DRESS Syndrome, liver damage, and serious health- and life-threatening issues. With specific AED's that are variously known to cause developmental regression, permanent vision loss, and a whole catalog of horrors that reads like the effects of poison. With drugs whose lists of known common side effects are so horrific that they commonly cause parents to lie awake at night worrying about whether they as parents are making the right decision in using them with their kids. Parents who begin to weigh the risks and the benefits. Parents who are literally picking their child's poisons.
AED's work through primary brain pathways. Medical marijuana works in a unique way--through secondary pathways. It is different from all other drugs used to treat epilepsy. As our doctor put it, it comes in through the back door. It utilizes receptors that are scattered throughout the brain--waiting there because the body already produces its own cannabinoids. Yes, the human body actually manufacturers the same kinds of substances--cannabinoids (CBD)--as the marijuana plant. CBD, I was told by a local epilepsy researcher, somehow almost magically helps the brain find the balance between excitation and inhibition, a balance that epileptic brains--that tend to be heavy on the excitation end of things--need help finding. Recreational marijuana is bred to be very high in THC (the part of marijuana that makes you high) and low in CBD; medical marijuana (CBD oil) is bred to be high in CBD and low in THC. CBD oil doesn't make children high because it is low in THC--the part of marijuana that makes you high--and high in CBD, aka cannabinoids--the part of marijuana that helps the brain find the balance between excitation and inhibition. We parents of kids with intractable epilepsy are not going to lie awake at night worrying about whether we're hurting or killing our children by trialing medical marijuana in our kids' epilepsy treatment. Medical marijuana--and specifically CBD oil--doesn't come with black box warnings. It doesn't reach toxic levels in the bloodstream like most AED's do--though it can change the metabolism of other AED's taken with it--leading to toxic AED blood levels (which is one of many reasons why the use of medical marijuana should be supervised by a doctor). No one has ever died from an overdose of medical marijuana. It doesn't destroy our children's livers. I'm not saying that there can be no ill effects at all, but we were also never given the assurance that there would be no ill effects with conventional AED's either. In fact, we were pretty well warned there would be ill effects and to watch for them.
And even if we were to lie awake worrying about our children trialing medical marijuana (which most of us don't), it would be nothing new for us. Lying awake worrying about what our children's epilepsy treatments are doing to them is our life. It was our lives before medical marijuana was even a thought in our minds. Such worrying goes with epilepsy because epilepsy treatment is all about utilizing dangerous, largely untested drugs, often off-label. And this is because we have no choice but to do this. We have no choice but to experiment with drugs about which very little is known.
And so, as you read about parents clamoring to be able to use medical marijuana with their kids with intractable epilepsy, please keep all this in mind. We parents with children with intractable epilepsy are already living life between a rock and hard place. We are living life at the edge.
Until medical research becomes more sophisticated, children who have intractable epilepsy are ipso facto lab rats.
So if you object to epileptic children being lab rats, you are simply objecting to the way life is for us and our children all the time right now.... (If you truly care, please fund organizations like CURE that are working to fund epilepsy research.)
We are simply hoping that medical marijuana helps our children find their way out of the maze of being a lab rat for truly dangerous prescription drugs and offers them some much needed relief....and the chance to lead normal lives, free from seizures. .
On its surface this argument seems reasonable and perhaps even prudent. But is it?
My response includes two points:
First Point:
There's something very perplexing about noting a dearth of studies about a substance which--because of it's classification as a US Federal Schedule I Drug (a dangerous drug with no medical value)--cannot legally be trialed and studied.
Think about that for a moment....
Marijuana's medical benefit can't be studied because it's already classified as having no medical benefit. Why does it have no medical benefit? Because there are no studies. Why are there no studies? Because it's against the law to study it. Why is it against the law to study it? Because it has no medical benefit. Hmmm....
But, because some fair-minded government officials (perhaps under pressure from those wanting to solve medical problems)--have begun to realize what a silly catch-22 situation this is, some doctors and researchers have, in the last few years, been granted special permission to possess and use marijuana for medical trials and studies-- in order to see whether it is, in fact, efficacious and safe.
And, not surprisingly, the very first results of those studies have been encouraging. Very encouraging.
The truth is that research on medical marijuana's efficacy and safety will continue to be frustratingly slow until it's Federally rescheduled. And rescheduling, of course, takes medical studies.... It's a chicken and egg thing.
Though objective evidence is currently sparse, anecdotal evidence isn't. It's there and growing, especially now that half of US states have medical marijuana laws (and the Feds are winking at its compassionate use).
Indeed, it's because of this anecdotal evidence that the Feds are winking....and much needed research has begun. And so those objections about using something that hasn't been adequately studied, however unfair, will soon be falling by the wayside.
And now, getting back to our original question...
Second Point:
This has to do treating children with drugs that haven't been adequately trialed, studied, and tested-- and specifically found safe for children. And the objection to using the epileptic child as a lab rat for drug testing.
The idea that the situation with medical marijuana--because of the dearth of studies about its efficacy and especially, its safety--is somehow different from that of conventional anti-epileptic drug's (AED) is something that many parents of children with epilepsy, and maybe even many neurologists, would dispute.
One of the first--and most enduring--things I learned about epilepsy (from hanging around online epilepsy support groups, where one gets the benefit of many people's experiences--and firsthand as the parent of a child with epilepsy) is that the treatment of epilepsy is less a well-developed science than it is an art. And that art is practiced through the process of trial and error--of AED's.
For some kids--especially those who end up diagnosed with intractable epilepsy, epilepsy is a series of many trials (in more than one sense of the word) and often unfortunately, nearly as many errors. It is no one's fault. It's just the way things are right now.
The truth is this: medical science doesn't understand as much about epilepsy as you might assume that it does.....and so epilepsy remains very difficult to treat.
Epilepsy is the most common disabling chronic illness of the central nervous system, and affects at least 50 million people worldwide. Although antiepileptic drugs are the mainstay of epilepsy treatment, less than 70% of those afflicted with epilepsy achieve satisfactory seizure control with the available antiepileptic drugs. In addition, many of the current anticonvulsants have various complications and serious side effects such as hepatotoxicity and agranulocytosis, which necessitates new drugs with more suitable margins of safety and more tolerability.
In modern pharmacology, drug development and introduction of new drugs are mainly based on our understanding about the pathophysiology of the disease. The exact pathophysiological basis of epilepsy is unknown.
As the above quote from a medical study states, medical science doesn't seem to understand why seizures occur--or what causes them.
As a fever-reducer is to a fever, so an anti-epileptic drug is to epilepsy. Just as a fever is a symptom of an underlying problem rather than the problem itself (and we know that fevers are caused by many different underlying problems, some of which will resolve on their own over time and some of which won't resolve without treatment, and will in fact get worse without treatment), so seizures may well turn out to be a symptom of many different underlying problems (that will or won't resolve on their own over time). Just as treating a fever with a fever reducer (though necessary) doesn't solve the underlying problem until the cause is addressed (or naturally runs its course), so treating seizures with anti-epileptic drugs (though necessary) may do nothing to solve the underlying problem until the cause of the seizures is addressed.
As we know from anecdotal experience, with fevers, the more serious the underlying problem, the more difficult the fever is to quell. Right now, except in a very few cases, medical science isn't trying to diagnose the underlying problem (the root cause of seizures) in individual cases of epilepsy; instead it only treats the symptoms of those problems: seizures. And just like with fevers, with seizures it may be that in many cases you won't really succeed in stopping the seizures until you understand enough to first, find, diagnose, and then treat the underlying condition (the cause). In fact, the differences in responsiveness to AED's may be not only be due to individual body response but also largely be due to the differences in the underlying causes of epilepsy--the responsiveness and pervasiveness of the underlying pathologies that are, in fact, causing the seizures in the first place.
When you begin reading about epilepsy you begin to realize that the epilepsy is still a big mystery. And if seizures are a big mystery,then so too the drugs used to treat them.. Medical science doesn't really understand how and why anti-epileptic drugs work when they work; nor does it understand why AED's don't work when they don't work.
Every person is an individual, every case of epilepsy different. Currently there is no way to predict how an individual child will react to an individual anti-epileptic drug (AED). Although genetic testing may hold promise in the long run, currently there is no pharmacogenomic (using genetics to determine drug reactions) protocol within epilepsy. So once again there is no choice but trial and error--making your child into a lab rat. Or to mix metaphors,it's like shooting in the dark at unknown targets using guns that are chosen by the type of target you're shooting at.
And so it's not surprising that you get different responses. Anecdotally speaking, you begin to observe that the very same AED can be a nightmare for one child and a miracle for another.
To some degree this makes perfect sense. With such low efficacy rates for individual drugs, with individual variation as to the underlying cause of epilepsy, and with differences of individual brain/body response, trial and error becomes the only way--at least right now--to find an effective treatment for an individual case of epilepsy.
When treating seizures, at the outset doctors attempt to classify a child's seizure type according to descriptions of his/her seizures (because there are many different kinds of seizures, not just convulsive ones), EEG's, and video EEG's. This classification of seizures is important because doctors know that certain AED's help eliminate certain kinds of seizures and can exacerbate certain other kinds of seizures. Doctors then begin working their way through a list of anti-epileptic drugs for that seizure type. The first line, newer generation, safer, lower side-effect drugs are trialed first; and after that, if needed, the others on the list. The further down the list of appropriate anti-epileptic drugs you go, the harsher, generally older, and riskier--with more serious side effects and more black box warnings (the most serious drug warning--involving risk of serious injury or death)--the drugs get. And you may be surprised to know that many--if not most--of these drugs are not approved for use in children. They're not approved for children because most haven't been studied in children. Except anecdotally. (See how similar the situation is to that of medical marijuana?).
In essence, when you have a child with epilepsy your child becomes a guinea pig, an open, active science experiment. You try this drug and see what happens; you try that drug and see what happens....and this process is repeated over and over again until SOMETHING works. Or nothing does.
When it comes to trialing drugs, it turns out that the law of diminishing returns governs. The first anti-epileptic drug trial brings seizure freedom for about 49% of children, the second drug for an additional 13%, and the third drug trial for yet another 4%. Once a child has failed two or three appropriately chosen AED's (that is, the drug has failed to stop the child's seizures), his/her epilepsy is classified as intractable...aka drug resistant...aka refractory. And if you want to be depressed, consider this: it's estimated that about one third of epilepsy patients (30-40%) are refractory. That amounts to an estimated 500,000 children in the US alone. Half a million children who are, ipso facto, lab rats.
After two or three failed AED trials, the likelihood that an as-yet-untried drug or drug combination will work becomes very small. And in fact, with each subsequent drug trial failure. the likelihood that any drug or any combination of drugs (because at some point doctors begin prescribing multiple drugs at the same time) will work, diminishes further.
What is to be done? Well, so long as seizures are still happening, there is nothing to do but to move forward and continue to trial drugs and groups of drugs, hoping that a drug or combination of drugs will eventually work--if not to bring seizure freedom, then at least to reduce seizures and improve quality of life. Even if drugs don't stop seizures, they usually reduce the number and severity of seizures. And, of course, these days, at some point other things are put on the treatment table. Things like brain surgery; a VNS (vagus nerve stimulator) implant; medical diets for epilepsy such as the Ketogenic, MAD, or LGIT; and.....medical marijuana.
Epileptologists tend to be on the cutting edge.. While other doctors may be conservative and many tend to shy away from new drugs until they've proven both efficacious and safe over the course of time, Epileptologists tend to be willing to be on the cutting edge, prescribing new drugs, prescribing drugs off label, etc. This is because of the way epilepsy is. Up to a third of kids with epilepsy are in a situation where they need a miracle. They need a new hope. They need a new drug because the old ones, the existing ones, have been tried and didn't work. Epileptologists' patients with intractable epilepsy need relief. These doctors are already prescribing dangerous drugs with severe side effects. Or they are contemplating recommending that their patients undergo work-ups to determine whether parts of their brains should be cut out. Or epileptologists are contemplating recommending that their patients go on extreme diets like the ketogenic diet that tricks the body into believing that the person is starving to force it to burn fat (supplied by the diet) instead of carbohydrates (which are severely limited). Any diet whose mainstays are whipped cream, bacon, and butter can be counted as extreme--and can, in fact, be life threatening or fatal if not properly monitored.. Relief from the seizures of intractable epilepsy demands extreme measures. Treating epilepsy is not for the conservative nor for the faint of heart.
So you see, a child with drug resistant epilepsy is a Guinea pig. An active, ongoing science experiment. Or as our daughter Awesome--who has intractable epilepsy--prefers to put it, a lab rat.
This is the context in which one needs to understand the push for legalizing medical marijuana and the push that parents of children with epilepsy make for the opportunity to be able to try medical marijuana for their children. It's not that we parents of kids with epilepsy or intractable epilepsy relish trying new drugs for which there are few official efficacy and safety studies and a dearth of studies about these drugs' effects on a child's developing brain and on the long term consequences of their use. It's just that we've already been doing exactly this. But with prescription drugs. Many of which are, in fact, known to be dangerous. We've been doing exactly this with prescription drugs not approved for use in children under 17--because there have been no studies in children under 17. With drugs whose effects on a developing brain are not known. With drugs for whom there is no data on long term use risks. With drugs that come with black box warnings (the strongest FDA warning, reserved for drugs with dangerous and even potentially fatal side-effects) because they are known to cause Stevens Johnson Syndrome, DRESS Syndrome, liver damage, and serious health- and life-threatening issues. With specific AED's that are variously known to cause developmental regression, permanent vision loss, and a whole catalog of horrors that reads like the effects of poison. With drugs whose lists of known common side effects are so horrific that they commonly cause parents to lie awake at night worrying about whether they as parents are making the right decision in using them with their kids. Parents who begin to weigh the risks and the benefits. Parents who are literally picking their child's poisons.AED's work through primary brain pathways. Medical marijuana works in a unique way--through secondary pathways. It is different from all other drugs used to treat epilepsy. As our doctor put it, it comes in through the back door. It utilizes receptors that are scattered throughout the brain--waiting there because the body already produces its own cannabinoids. Yes, the human body actually manufacturers the same kinds of substances--cannabinoids (CBD)--as the marijuana plant. CBD, I was told by a local epilepsy researcher, somehow almost magically helps the brain find the balance between excitation and inhibition, a balance that epileptic brains--that tend to be heavy on the excitation end of things--need help finding. Recreational marijuana is bred to be very high in THC (the part of marijuana that makes you high) and low in CBD; medical marijuana (CBD oil) is bred to be high in CBD and low in THC. CBD oil doesn't make children high because it is low in THC--the part of marijuana that makes you high--and high in CBD, aka cannabinoids--the part of marijuana that helps the brain find the balance between excitation and inhibition. We parents of kids with intractable epilepsy are not going to lie awake at night worrying about whether we're hurting or killing our children by trialing medical marijuana in our kids' epilepsy treatment. Medical marijuana--and specifically CBD oil--doesn't come with black box warnings. It doesn't reach toxic levels in the bloodstream like most AED's do--though it can change the metabolism of other AED's taken with it--leading to toxic AED blood levels (which is one of many reasons why the use of medical marijuana should be supervised by a doctor). No one has ever died from an overdose of medical marijuana. It doesn't destroy our children's livers. I'm not saying that there can be no ill effects at all, but we were also never given the assurance that there would be no ill effects with conventional AED's either. In fact, we were pretty well warned there would be ill effects and to watch for them.
And even if we were to lie awake worrying about our children trialing medical marijuana (which most of us don't), it would be nothing new for us. Lying awake worrying about what our children's epilepsy treatments are doing to them is our life. It was our lives before medical marijuana was even a thought in our minds. Such worrying goes with epilepsy because epilepsy treatment is all about utilizing dangerous, largely untested drugs, often off-label. And this is because we have no choice but to do this. We have no choice but to experiment with drugs about which very little is known.
And so, as you read about parents clamoring to be able to use medical marijuana with their kids with intractable epilepsy, please keep all this in mind. We parents with children with intractable epilepsy are already living life between a rock and hard place. We are living life at the edge.
Until medical research becomes more sophisticated, children who have intractable epilepsy are ipso facto lab rats.
So if you object to epileptic children being lab rats, you are simply objecting to the way life is for us and our children all the time right now.... (If you truly care, please fund organizations like CURE that are working to fund epilepsy research.)
We are simply hoping that medical marijuana helps our children find their way out of the maze of being a lab rat for truly dangerous prescription drugs and offers them some much needed relief....and the chance to lead normal lives, free from seizures. .
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