8.31.2015

full moons, fevers, fits and fairs

The whiff of sour on my baby’s breath and the tug of a full moon weren’t omens enough to shake me into thinking the fit would come so soon, on day five. But it seems the moon, with its mastery over the ocean’s tides and supple bodies like mine, took hold and roped my boy’s brain into momentary chaos.

In the waxing days, a fever smoldered on Calvin’s brow like white-hot embers without a flame—perhaps a sign of illness, though more likely another side effect of withdrawal, just as the countless nights he now sits awake in his bed for hours, wired and restless, cackling and panting.

As the fit took hold I cracked the plastic cap off of the vial, pulled down his diaper and inserted the tip into his rectum, then releasing a stream of mind-numbing gel. Within minutes the seizure had stopped and my boy was fast asleep, his brain bathed in a benzodiazepine meant to quell a cluster of fits.

Calvin slept soundly throughout the night and woke on time to get more meds. He seemed calm and content, likely the result of the extra benzodiazepine on board a craving brain in active and prolonged withdrawal; in essence, he got his fix.

By late morning he seemed well enough to go on a trip (we're wary of the tendency to stick too close to home, our kind of lives too easily lead by fear of the unknown) so I packed extra clothes, diapers and wipes, took his temp, which thankfully had cooled, brought along the thermometer and fever meds, his diced fruit and cuke, sandwich and yogurt, extra water and a syringe of batch #9 THCA cannabis oil in case we got delayed. Destination: Windsor Fair.

Most of the way north Calvin’s scrawny arms held me in a headlock in-between feeding him bites of food like the little birdie he is. A slight breeze gifted the first day of the fair, though my boy still waned and wilted in Michael's care under the heat of a relentless sun. I was taking a photo of the two, wondering if Calvin was having a partial seizure judging by the pale, blank expression on his face, when I noticed her. Though perhaps a couple of years older, she could have been Calvin's twin—tall, thin and pigeon-toed with spastic arms which, when gravitating to her mother’s face, were lightly batted away. She walked precariously between solemn parents, her mother’s arm around the girl’s narrow shoulders, which were brushed by a swaying ponytail.

“I bet she also has epilepsy,” I said to Michael, wondering what kinds of drugs the poor girl has to endure, wondering, too, and hoping they'd discovered cannabis oil.

As we sat in the shade of a ring from which young goats bleated and cried like human babies—like Calvin—several other disabled people crossed our path, one clutching a shiny plastic toy and mouthing a Mylar balloon, others walking gingerly next to their parents and still others rolling by seated in wheelchairs—all of them children, though some of them grown.

Later, a young father of three spry tots, upon seeing us escorting our curious boy, nodded and smiled—a rare validation—and when he did I was especially glad I’d come to the fair. It's where all types convene, where kids get in free, animals are revered, camaraderie comes in all forms and where full moons, fits and fevers are forgotten, at least for a good while.

8.28.2015

the falling sickness

My friend Accra, like my husband Michael an accomplished photographer and professor of photography, wrote to me yesterday. He said that while he was cleaning his studio he came across the contact info of a former Pratt student, James Smolka. Accra decided to see what James was working on, and upon viewing his website, he found this very poignant piece on epilepsy, suggesting I check it out.

Below are the first two photos in a suite of nine sets, each portrait featuring someone with epilepsy followed by a photograph of their sentiments about their condition. Their reflections are telling, none more so to me than the last, made by a boy who, though older, might be similar to mine.

Each photograph is stunning in its own way, some cast with a somber tone, others imbuing a sense of hope while still others evoke feelings of sad surrender—all truths of the complex condition known as epilepsy.

When I asked James if I could publish his photographs on my blog he agreed. I asked what his interest was in epilepsy and he told me that he has was diagnosed with it in third grade, then had brain surgery when he was in high school, though still has occasional seizures. James offered to do a portrait of Calvin. I hope some day he can make the trip from Brooklyn to Maine. I'd be interested to see if his photo of Calvin would be cast with despair, hope or resignation, or some tangled impression of them all.


BlairPhotos by James Smolka

8.24.2015

not his fault

I try to remind myself that it’s not his fault, and while I do my blood boils over a medical community that so often prescribes benzodiazepines for too many little children suffering from epilepsy, its doctors often failing to educate their patients—or perhaps unschooled themselves—about the vast array of heinous effects of the drugs: their long list of debilitating side effects, the body’s quick habituation to them, their all-too-often gradual loss of efficacy and the need to continually increase doses, their painful, protracted, sometimes dangerous withdrawal side effects, particularly if weaned too quickly and even simply from simple habituation, their damage to the brain, their tendency to impede development especially at high doses, their common paradoxical effects on children’s behavior and sleep and calm. Some kids apparently benefit, but I wonder, in the long run, at what cost.

So, when my boy experiences bat-shit crazy days full of ear-piercing shrieks, hyperventilating, incessant coughing and whining, days full of aggression, of scratching my neck, dragging his teeth across my face and pulling my hair, of dropping to the ground and flailing like a fish on a dry dock, of being totally wired hours after his bedtime and, when as a result, my patience wears thin and I morph into a haggard mess of volatile nerves, I try to remind myself that it’s not his fault, because if I don't, I get cross, which is not something anyone would want to witness.

I try to remember that, in this years’ long withdrawal from clobazam (brand name Onfi), at any given moment he might be feeling nauseous or perhaps have a menacing headache, even a migraine, or tinnitus so bad a needle of sound, like a cicada on steroids, is piercing his brain. I try to remember that he might have tingling skin or aching bones or painful cramps as bad as any of us have experienced. He might be feeling dizzy or weak and wobbly or confused. He might be hallucinating, the wind sounding like a freight train through a tunnel. He might be seeing distorted forms floating across in front of his face or sensing something crawling over his skin. He might be depressed or anxious or afraid or so miserable that if he knew what dying was, he’d want to.

I know my kid. I've seen him suffer withdrawal, seen him seize for hours as a result, seen him writhe in pain half the night, heart racing, eyes rolling back in his head, tears streaming, sometimes looking at me and moaning, hoping I can save him. I've seen videos of adults in benzo withdrawal, shaking and shivering and pleading for help. I've read stories of those who've suffered through withdrawal and lived to tell about it. I've had countless parents tell me that their kids are going through the same things and that their child's neurologist downplayed the side effects and didn't instruct them on how to safely withdraw. I've read that benzodiazepines can harm memory and vision and contribute to the development of Alzheimer's. I've read that some withdrawal side effects can last for months, if not years, after discontinuation of the drug and that some of them can be permanent.

You may wonder why I write so often about benzodiazepines. I do because one of them, clobazam, for the time being rules our dystopian world. I do because, though I don't mean to burn bridges, if I can persuade just one neurologist to think twice—deeply—before prescribing a benzodiazepine for their next patient, perhaps deterring them, then maybe that child will be spared a hell that I don't think anyone could imagine unless they lived it.

So, I try to tell myself that Calvin's behavior is not his fault and that his suffering and mania and our splitting nerves were brought on by a seemingly innocuous little white pill with the power—quite literally—to ruin lives.

 Onfi drug insert:

8.21.2015

boy in the pill

While writing about benzodiazepine withdrawal, I came across this photo that Michael took of our boy on a recent, sweltering summer day. In it, Calvin is flailing and finger-snapping, toe-crunching, teeth-grinding and squealing. I see the "O" of the pool encircling him and am somehow reminded of so many thousands of pills—some white, some robin's-egg blue—that I've spooned into his open, baby-bird mouth in the nine-and-a-half years since he was diagnosed with epilepsy. Then I realize, that though it is my boy who is eating the pills, more so it's the pills that are devouring my boy.

Photo by Michael Kolster

8.17.2015

young frankenstein

For the first time in his eleven years, my boy sat on a picnic bench next to his father and took bits of ice cream from our cones, wincing at the icy treat on his sensitive teeth, yet going back for more. A year ago, Calvin did not know how to bite pieces off of a banana, much less lick or nibble an ice cream cone. Maybe one day he'll be able to hold a cone all by himself, though the prospect of that—something he used to be capable of doing before the onslaught of mind-numbing epilepsy drugs—seems light years away or, in other words, impossible.

Sunday was a scorcher, and humid, too, so we spent some of it in an air conditioned car and in a climate controlled grocer where Calvin stumbled down the aisles with Michael, teetering and drooling, squealing and flailing his arms as onlookers either smiled, averted their eyes or gawked with apparent disgust. Thankfully, most of the day Calvin was calm and collected, though at times his hugs were so intense I felt as if I were wrestling a giant.

Speaking of giants, the night before, Michael and I went with our neighbors to see the Mel Brooks' comedic musical, Young Frankenstein. I've seen the film a dozen times or so over the years, though not for a while and never the musical. It started off with a bang: amazing acting, singing and dancing peppered with lots of lewd jokes, which I adore. But when it came to the part where The Monster awakens from the dead, surprisingly my heart sunk into my shoes. The seven-foot-tall ogre sat up and grunted—moaned really—and I immediately thought of Calvin who, because of the clumsy way in which he walks, sometimes with arms outstretched, I often call My Little Frankenstein. Throughout the performance, whenever The Monster opened his mouth and let out a garbled groan, the audience laughed. In the second act, The Monster, misunderstood, hungry and thirsty having fled a throng of fearful townspeople, came upon a lonely blind man who invited him into his home. The blind man, whose motives were pure and brotherly, accidentally spooned hot broth into The Monster's lap, spilled his mug of wine before The Monster had a chance to sip, and lit The Monster's thumb on fire thinking it was a cigar. The scene, which had always been hilarious to me, now was a baffling mix of comedy and tragedy.

Despite my bittersweet response, I sat and enjoyed the rest of the show while also pondering the strangeness of folks laughing at a creature not unlike my Calvin: mute with an abnormal brain, misunderstood, feared by some, loved by others, a strangely behaving thus awkward looking, peculiar sounding wretch. I couldn't help but think that we were all laughing at disability, and I wondered what disability advocates have had to say about the Brooks' production these days.

Sunday night, sitting around a backyard fire, Michael and I chewed things over with our good buddy Matt. I told him how strange it felt to see and hear the awkward Monster—perhaps a grown-up, albeit green, version of Calvin—and how the crowd's response, indeed mine, messed with my perceptions, strangely twisting what I saw as both empathy and contempt for an odd monster. Matt mentioned other misfits, underdogs, of Mel Brooks movies: Cleavon Little who plays Bart, a black cowboy in a racist white Wild West and Gene Wilder who plays Jim, his rusty, sharp-shooter side kick in Blazing Saddles. We determined that in all three cases—Frankenstein's Monster, black Bart and Jim—the viewer is compelled to root for them and, in the end, they come out on top, the joke being on everyone else.

I suppose realizing this quashed my hurt feelings, but as I considered that The Monster—from the get-go so strong and virile—in the end became an intellectual, a perfect specimen of a man, I simultaneously realized Calvin will never live that romantic reality. He might instead one day become a six-foot Frankenstein in diapers, hobbling down the street cawing and crowing and growling like some kind of beast, townspeople scattering this way and that to avoid mishap, then turning in his wake and, like the little girl did on the park bench today, laugh at him as he passes.

8.11.2015

wicked benzo blues

Calvin had a seizure on the morning of day eighteen, which is about twice as long as his average between seizures in what is probably close to a year. We had previously and temporarily halted his benzodiazepine wean for several weeks, keeping variables at a minimum, while we added a probiotic to his regimen. Me thinks the pause is probably what bought him more time. Either that or the unlikely event that I slept through one of his seizures.

Benzodiazepines, a class of highly addictive drugs—Xanax, Klonopin, Valium, Ativan, Versed, Restoril to name only a few—are used to help people sleep, to calm anxiety, to relax muscles, to stop seizures. Studies have shown that benzos can become addictive after only a few doses and are therefore intended for short term use only—a week or two—because habituation occurs, which means the brain continues to require more of the drug to achieve the desired effect.

My eleven-year-old son Calvin was prescribed his first benzodiazepine, clonazepam (klonopin) when he was only three years old. Imagine. Since being diagnosed with epilepsy the year before, he had already failed three anticonvulsant drugs—he didn’t tolerate the first, the second failed to adequately control his clusters of seizures and the third, besides not working, had begun showing initial signs of damaging his liver. A small dose of clonazepam was prescribed as a bridge drug while Calvin made the switch from the third drug to two others, one of which, Lamictal, required very slow titration to avoid developing serious, often lethal, skin rashes.

After eight weeks, Calvin reached a therapeutic level of Lamictal, at which point I began asking his (former) neurologist when we could take Calvin off of the clonazepam. I asked him at every appointment, which were almost monthly. For reasons the neurologist—who I like to refer to as Dr. Rx—never fully explained, and despite the fact we pushed him on his stance, he never relented and Calvin stayed on the drug for three years without my full knowledge of its damaging effects. To be clear, I had studied its long list of side effects, many of which were similar to other anticonvulsant drugs, which can sometimes abate over time and which neurologists tend, for whatever reason, to downplay. But I didn't dig deep enough.

Subsequently, under the care of another neurologist and while Calvin was on the ketogenic diet, we finally started tapering the clonazepam since emerging skills had appeared to dampen and Calvin's muscle tone, essential for walking, had worsened. Using a razor blade and a homemade template, I cut the tiny, wafer-like pills on a mirror so we could wean his dose as incrementally as humanly possible. Even so, Calvin’s seizures doubled. He began having them dozens of times each month—every day or two. We took it slowly, but still, Calvin lost his appetite and at times his ability to swallow. He slept horribly and was irritable. Due to this increase in seizures we were persuaded to add a fourth drug to his regimen to try to rein them in. With about twenty anticonvulsant drugs to choose from, Calvin's neurologist gave us four viable options. One and two were Banzel and Vimpat, two fairly new drugs I balked at because their long term side effects were yet unknown. The third was Felbatol, which was known for its high incidence of fatal aplastic anemia. The fourth was clobazam, a benzodiazepine derivative—a relative of clonazepam and Valium—which was not available in the US but could be procured, out of pocket, from Canada.

We were told that, since clobazam was a benzo derivative, its side effects weren’t as bad as true benzos, that it was well tolerated, that it wasn’t as much of a muscle relaxant and that it didn’t have the same reputation for habituation and addiction as other benzos. We were told that it might even ease Calvin's wean off of clonazepam; that was the clincher. So, we gave it to Calvin and his seizures stopped for a month, then returned. We increased his dose. They stopped for a few weeks, then returned. We increased his dose each time his seizures spiked. The seizures would wane for a time and then, within weeks, reappear. In the end, Calvin was able to come off of his other drugs but still had seizures that slowly increased every few weeks no matter how high we ratcheted his clobazam. Calvin was eventually taking the equivalent of an adult dose of clobazam twice a day every day for nearly four years, and because his seizures were not controlled, in that span we added two other drugs to his regimen. Our kid became a raving lunatic, and one who still had seizures.

During this time, having become the kind of parent who knows by heart her child’s doses of every drug (I'm always surprised at how many parents don't) past and present—even milligrams per kilogram of his weight—and who memorizes side effects of drugs, some of which even the neurologists seem unaware of, I began researching benzodiazepines more deeply than I had before. What I found out horrified me.

I learned that benzodiazepines can hinder the formation of new memories, which can impede the learning process of a developing brain. Is this why Calvin’s progress was and is nearly stagnant and why he can't speak? I learned that benzos upset the gastrointestinal tract. Is this why Calvin has such trouble digesting his food and experiences so much pain and discomfort? I learned that benzos—all of them tranquilizers—can have a paradoxical affect on behavior, especially in children. Is this why Calvin is such a raving lunatic at times? I learned that benzos can cause psychomotor hyperactivity. Is this why Calvin could not sit still, would not sit in our laps, would no longer let us read to him, could no longer manage using a spoon to eat? I learned that benzos can negatively affect sleep. Is this why Calvin roused a half dozen or more times each night and woke at 4:30 am? Since most antiepileptic drugs can cause these kinds of side effects, I could be certain of nothing except the feeling I had in my gut. Then, as if all my research about benzos and their side effects wasn't enough to make me want to puke and scream and drink myself into oblivion (I'm not that kind of a drinker) I learned about benzodiazepine withdrawal syndrome—something neurologists fail to mention or perhaps aren’t versed in. I learned that the benzo weaning process must be done painstakingly slowly—in 10% increments over the course of months if not years—to avoid worsened and protracted side effects. Neurologists recommend much swifter weans. I learned from other parents that if I wanted to get Calvin off of the clobazam safely while limiting the heinous side effects, I’d have to switch him to the liquid form of the drug, enabling us to titrate slowly enough. No neurologist told me that. I learned that the longer a person is on a benzo and the higher the dose, the harder the wean, and that if it’s done too quickly the person can experience horrific side effects for months, even years, after the drug is discontinued. I also learned that some of the side effects can be permanent. I read that Stevie Nicks, when in benzo withdrawal, felt like her brain was on fire.

Perhaps some people with catastrophic seizure disorders—adults and children who suffer hundreds of seizures every month, every week, every day—might have few other choices but to try benzodiazepines, either that or die. But in cases like Calvin’s, who was having "only" a dozen or so seizures per month, having not exhausted all of the anticonvulsants and alternative options available, and considering the consequences of taking benzos long-trem, their side effects, habituation and the dangers of coming off of them, in hindsight, prescribing clonazepam and clobazam were bad ideas. Better for Calvin never to have been on them than to suffer so deeply on so many levels and for so very long—eight of his eleven years.

Thankfully, Michael and I can be analytic, and we realized, albeit later than we should have, that in order to maintain seizure control by using clobazam, we'd have to continue increasing Calvin's dose well past toxic levels, which was unsustainable, undesirable and dangerous. Our only other option was to take Calvin off of it. Luckily, the use of cannabis oil, which I also researched in depth for a year or more before giving it to Calvin, has seemed to subdue some of the benzo withdrawal's bad side effects and, having eventually reduced over 80% of his clobazam, Calvin has not experienced a marked uptick in the average number of grand mal seizures compared to when he was on his full dose of clobazam prior to starting cannabis.

With a bit over a year under our belts, we've got another six to twelve months before Calvin is completely off of the clobazam, but at least there's an end in sight to the wicked benzo blues, and with each step down, we get a little bit more of our sweet boy back.

Calvin sitting and looking at a book. Something he would have never done before cannabis and the benzo wean.