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I have often compared the methods by which neurologists prescribe anti-epileptic drugs (AEDS) for those unfortunate enough to suffer from refractory epilepsy (refractory defined as those seizures not controlled by the administration of at least two drugs) as similar to a game of darts or a crap shoot. Nothing makes my head shake harder or my blood boil higher than listening to people talk about the three and four and five drugs their child with epilepsy is currently on and still seizing. You can go on any listserv or interactive website and read these people's stories -- the stories of multiple drugs and surgeries, of hemispherectomies and the other half of the brain seizing, of high fat diets and partial fat diets, of vagal nerve stimulators and promising this and more promising, less invasive that -- they go on and on. People wonder aloud when their child is on a new drug and still seizing whether he is coming down with a virus, or whether she is going through a growth spurt or teething or getting ready to make a developmental leap. The list goes on and on -- was it the fake candles burning at the party? Could the trigger be soy? Is it the combination of drugs or the dosage? Is it the barometric pressure, the heat, the cold, the humidity the aridity? Is it the phase of the moon or the position of the universe on its axis? I have agonized over each of these and sometimes feel as if I've done it all, seen it all, am jaded and cynical about literally everything in the medical world, particularly in the dark valley of neurology. And still the doctor throws the dice, throws the darts, if he's ethical he might admit that this kid is probably not going to see control with drugs; if he's unethical (and this is my opinion), he's going to keep piling on the drugs and adding drugs for the drugs' side effects and the result is MADNESS.
That's my rant. And the cause of the rant is THIS, a rather long and obtuse article that was published a couple of years ago in one of the most prominent epilepsy journals in the world:
This main finding underscores that the proportion of seizure-free patients in whom the treatment effect can be directly attributed to AEDs (rather than to the combined effect with placebo) is disappointingly small. Furthermore, given that refractory epilepsy is a chronic disorder, uncertainty and concerns exist about how predictive such a short-term seizure-free result can be for the long-term seizure outcome of the patient (Gazzola et al., 2007). In addition to those becoming seizure-free, 35% of patients benefit from seizure reduction of at least 50% compared to 15% of those receiving adjunctive placebo. This provides a weighted pooled RD of 21% (95% CI 19–26) for 50% seizure reduction in favor of AEDs. Clearly, seizure reduction as a direct effect of AED treatment in one of five patients is a welcome benefit for those who have not become seizure free. However, recurring seizures are also an unmistakable sign that the epilepsy symptoms are not under control, and unpredictability remains when to expect the next seizure. Although regulatory agencies and healthcare providers acknowledge 50% seizure reduction as a sign of efficacy in industry-sponsored trials of AEDs, the clinical relevance of such an improvement on the overall health status of patients is thought to be very limited (Birbeck et al., 2002).
You can read the whole study HERE, titled Placebo-corrected efficacy of modern antiepileptic drugs for refractory epilepsy: Systematic review and meta-analysis.
Then you can either join me in a round of craps or stab yourself with a dart on its way to the ever-elusive bulls-eye.
A few facts:
I am not a doctor and don't know everything, but they don't either.
Epilepsy affects nearly three million people in the United States alone. It is more common than Parkinson's,
multiple sclerosis and cerebral palsy combined.
It causes as many deaths per year as breast cancer.
Most people with epilepsy have good control of their seizures through medication, surgery and/or lifestyle
changes. However, nearly one third of those with epilepsy have poor or no control of their seizures.
Those are the seizures we call REFRACTORY.
I don't know what the hell is going on with Blogger at this late hour, but I wash my hands of all responsibility for the crazy formatting.
I sort of think of doctors as being like watch-makers of olden times who have been given the most sophisticated computer ever made to work on.
ReplyDeleteI think that's where we are in brain-science and neurology. Don't you?
No. You can't give up. Just because they don't know yet doesn't mean they never will. I believe this with all my heart.
I've heard that if you own an independent pharmacy, you want to be in a building with dermatologists and neurologists!!
ReplyDeleteBest,
Bonnie
I like your rant and your research article. I am sad that the medical world can't do more for refractory epilepsy thx again for increasing awareness and I will continue to hope for a breakthrough treatment for Sophie that is backed up by hard science!
ReplyDeleteWell, you can't give up. (Unless it's just for a minute or two.) And stabbing yourself with a dart is a less-than-perfect idea, too. But I hear you. Totally.
ReplyDeleteSending love your way.
For as long as they don't start again with the leeches I will have no realistic option, and unfortunately neither would you.
ReplyDeleteBut I know your feelings almost as well as my own. I think that if we were to spend the money wasted on wars and military budgets in our country and instead dedicate those funds to do some research and not leaving the "cures" to the pharma mafia, things could be not only more productive but perhaps a cure or at least some real relief could be offered to those suffering at the hands of this cruel malady.
I send hugs to you and Sophie, some I hope to be able to deliver in person one of these days.
My eye is still twitching from that article. I have a post brewing on it, too. Blerg is about all I can manage at present though. Not very eloquent, but succinct!
ReplyDeleteBlerg.
I have a slightly less jaundiced view of doctors but I have not been through what you've been through either. I believe that most doctors are trying their best, not all of them, but most. The sad truth is that modern medicine is not that far removed from medicine two hundred years ago. We do somethings better now but still can't cure most things and have only a modicum of success in treating chronic illnesses.
ReplyDeleteLook at me, I take my anti-depressants religiously and still I fall hard into the deep black pit of depression. The brain is far too complicated for us to understand yet, perhaps in time but not now.
This morning I had a patient who had been treated with radiation, he had burns around his abdomen from the treatment to his prostate. I thought to myself, how is this better than dying from cancer? It seems less a treatment and more of a prolonged dying.
Sorry, I'm a mood tonight. Epilepsy sucks, bottom line.
I read about vagal nerve stimulation recently ... and after briefly having HOPE ... I realized ... Elizabeth knows about it .... and it means nothing for Soph. What a roller coaster you're on. And shooting darts while you're on it.
ReplyDeletehmmmm. The docs are playing darts with my son's brain too. The further down the rabbit hole we get with his treatments, the scarier it gets. All these meds, still sooo symptomatic. Heartbreaking.
ReplyDeleteI wonder what the world would look like if the pharmaceutical companies only got paid according to the amount of side-effect free symptom control their drugs allowed each patient.
ReplyDeleteOr if the drugs were more aimed at root causes instead of quieting symptoms. And if they weren't market-driven. That sort of thing trickles down, too.
(By the way, the word verification for this comment is "shame." No shit.)