2.23.2018

a bad day for benzos

When Calvin was three, we found ourselves in the pediatric intensive care unit—again. We'd been there more than a handful of times the previous year for clusters of seizures which led to prolonged fits, including one scary grand mal lasting forty-five minutes. Calvin's anticonvulsant medicine at the time, Depakote, was the third one to fail after Trileptal and Keppra. I had questioned his neurologist, who I'll refer to here as Dr. Rx, about his choice of Depakote for a child who, because of his age, developmental delay and type of seizures, was deemed high risk of developing liver failure from use of the drug. Dr. Rx downplayed the threat, prescribing it nonetheless.

When Depakote failed to thwart another dangerous spate of seizures, Dr. Rx decided to switch medications again. This time he chose to put Calvin on Lamictal, a drug requiring eight weeks of titration to avoid two dangerous, sometimes lethal rashes. The plan was to keep Calvin on Depakote while slowly increasing the Lamictal to a therapeutic level, at which point the Depakote would be eliminated. However, Calvin's blood work came back showing dangerously elevated liver functions. This discovery required the immediate discontinuation of the Depakote, thereby necessitating a second drug, Zonegran, to be put in place while the Lamictal was being titrated.

Why Dr. Rx didn't simply choose to switch to Zonegran instead of Lamictal, I don't know. What I do know is that I was relatively new to the game and hadn't the time or presence of mind to think it all through and press him on his decision. I was frightened for my seizing child, and perhaps too trusting of doctors in general. What made matters worse is that Dr. Rx also prescribed clonazepam, aka the notorious benzodiazepine Klonopin, to be used as a "bridge" drug, meant to fill the gap until the Lamictal got up to speed. But wasn't that why he prescribed Zonegran? I wish I'd pressed him harder on that issue, too. I wish I'd known what benzos were, how they worked, the risks they posed. Most regrettably, perhaps more so than any other decision made for our boy, Calvin traded one drug for three; most unfortunately one of those was a benzodiazepine.

Fast forward two years to the summer after Calvin began the ketogenic diet. The diet hadn't put a dent in his seizures, had caused him to gain a lot of weight, and increased the blood levels of his drugs, exacerbating their side effects. Still, we were loathe to give up the diet, though in hindsight we should have done so within months of initiating it when it was clear it wasn't working. Thinking clonazepam might be the culprit of some of Calvin's stupor, lethargy and ataxia, his new neurologist, Dr. T, thought it might be wise to wean him off of it. Over the course of just six weeks—a protocol I learned later is far too swift, particularly considering Calvin had been taking it for over a year—we began decreasing the drug. Calvin's seizures immediately doubled, hitting him every day or two. He stopped eating everything but yogurt, disrupting the delicate balance of the diet. He forgot how to swallow his medicines, holding them in his mouth for up to ninety minutes at a time. Something had to give.

Four drugs were recommended to us as options. Two were new ones on the market, which gave me pause not knowing their long-term side effects. A third was known for causing fatal aplastic anemia. The fourth was a benzodiazepine derivative called clobazam, aka Onfi. Dr. T told us, as a derivative, Onfi is thought to be less of a muscle relaxant and less addictive than other benzos, and that it might even assist Calvin off of his Klonopin. With some trepidation, we took the bait.

The following month Calvin had no seizures. Then, in subsequent months they began appearing again. First one, then two, then three and so on. Each time we increased his dose. This pattern continued for months on end as we were simultaneously weaning him from the ketogenic diet, the Zonegran, then finally the Lamictal. Eventually, his Onfi dose reached 35 milligrams per day, an adult dose frighteningly high for a child weighing less than forty pounds, and an amount well over what we knew to be therapeutic. Calvin remained on this dose for four years while we added two other drugs, Banzel, then Keppra, again. The drug cocktail worked well one summer; Calvin went 78 days without any seizures, but what suffered was his behavior, which had become intolerable. He shrieked much of the day, particularly when in the car and when being fed. His sleep was erratic; insomnia a major problem. He woke up crying every morning. He couldn't sit still. At one point he became anorexic, losing ten percent of his body weight in a single month. I was reduced to tears most every day. We were all miserable.

Finally, Michael and I decided we needed to focus less on seizure control and more on quality of life since ours was rapidly deteriorating. We chose to begin eliminating drugs. The first to go was Banzel, which was relatively easy. Having done some in-depth research, I discovered cannabis as therapy for seizures and began making a homemade THCA oil and giving it to Calvin. I read some more about the trouble with benzodiazepines, their tendency to cause paradoxical reactions in kids such as hyperactivity, insomnia, agitation, restlessness. I stumbled upon the Ashton Manual, the bible for benzodiazepine withdrawal, and we began weaning the medication on a schedule we developed, wisely, without advice from any neurologist.

I'm happy to report, today was a bad day for benzos; tonight, about an hour ago, Calvin took his last dose! WOOO HOOOO!

What I hoped might be a one- to two-year withdrawal became a wean just shy of four years. But with the help of the cannabis oil, we've seen Calvin's daytime grand mals disappear. On most nights now, our boy is sleeping incredibly well. Benzodiazepine withdrawal effects can be lingering—some of them perhaps permanent—so he remains restless, though is legions better than before. His behavior is less and less erratic. He can walk on his own in the absence of obstacles and where the terrain is level. He is less stubborn, less manic, not nearly as loud, and has more stamina. He is having more seizures each month, though—one or two extra grand mals at night and a smattering of daytime partial complex ones—but as the benzo fog recedes, and as we move away from his last dose I expect to see fewer seizures.

Note: I have heard from some parents that benzos are the only drugs that seem to work for children who have the most serious cases of epilepsy. But if you can avoid them, by all means, do.

With benzos behind us, hoping we will see Calvin more often looking like this.

2.21.2018

changes

It couldn't have been clearer to me that Calvin would have a seizure by this morning. In his own way, he tells me. I just have to watch and listen. Yesterday, he showed nearly all of the usual, and some not-as-usual, harbingers: bloody nose, whininess, major finger snapping and other repetitive behaviors, pacing, warm hands, uber-rashy butt, agitation, restlessness, intensity, detachment.

At five a.m. it came. Perhaps the extra doses of concentrated THCA cannabis oil just past midnight and at three o'clock impeded its arrival. As I spooned with him after the seizure, I felt how calm his body was, noting the absence of what I call aftershocks—shivering and shudders which often occur in the wake of grand mal seizures. I had no doubt THCA had something to do with his serenity.

Mostly awake since three and therefore exhausted, I still had a hard time relaxing my mind. Lying there, again I considered the world. I feel it going through its own convulsions, having more than its share of anger, hatred and greed, its racists, abusers, tyrants and liars bent on destroying humanity at nearly any cost, lusting for power through intrigue, attempting to avoid capture. What drives these men to such extremes, these gun-toting terrorists, abusers, trolls and bots, these conspiracy theorists, these despots and deceitful oligarchs? Meanwhile, in my arms lies one of the purest souls on earth, a boy who inspires love and compassion, requires my mindfulness and who, though he tries my patience at times, makes me want to live simply and be a better person every day.

Yesterday, when reading about the Marjory Stoneman Douglas high school students traveling to the Florida state capital to express their desire for the legislature to pass stricter gun control laws, I thought about Calvin. I imagined him being crammed into a closet with twenty others his age, little room to breathe, waiting silently for ninety minutes until the shooter fled the scene. I imagined Calvin—if he were a typical kid—fearing for his life, texting us, being riddled with bullets or sobbing when finally set free. I imagine him, later, boarding a bus with his classmates to march on state capitals and Washington DC demanding changes to gun policy. He'd be that kid. He'd change the world. No doubt he has, in his own way, inspired such things in others and in me.

A former teacher—one who has never met Calvin nor could comprehend the depth of his disability, who had no children of his own much less a non-verbal, incontinent, uncoordinated, delayed, epileptic one—once asked me why I named my blog Calvin's Story, or rather, why I didn't write more often from my son's perspective since it bears his name. I recall being slightly irked and thinking, perhaps even saying to him, that Calvin informs my world, and since he lacks the ability to speak, I must lend my voice to tell his story—which, because we are so inextricably linked, is ours—the one he might have told if he had been born normal. In short, I have to dream. I revisit that question from time to time, checking in with myself to ensure I am doing justice to Calvin's unusual and complicated childhood experience, exploring notions of my own with regard to him hoping I can extract some meaning from it—which is not to say I am searching for answers as to why he was born so afflicted. (Shit just happens, with no inherent reason, no purpose. Prayers prove useless, the absence of God in schools a lame excuse for mass shootings; pedophile priests still lurk in churches.)

This morning, I considered our children's truths and stories as told by themselves and their parents when I heard a former GOP congressman expressing doubt that the teenagers organizing a nationwide rally against guns—thinking the students incapable because of their youth—are doing so of their own volition. Instead, he suggested that they are mere pawns of leftist organizations. Clearly the response was from someone too detached to understand young, informed, impassioned minds, or too partisan, ignorant or cowardly to think, appear or admit otherwise. His lame statement led me to recall the David Bowie lyric I read yesterday from his song Changes:

And these children that you spit on, as they try to change their worlds, are immune to your consultations, they're quite aware of what they're going through.

I went on to ponder the right-wing conspiracy theorists who've shamefully suggested that the Florida school shooting, along with the Sandy Hook massacre, was a government ruse and that the students are actors. I wonder what in the hell these losers, jerks and trolls want to do to the virtuousness of the world. I can only hope, and work, to squash them all and liberate the truth, and soon.

And so, as my son spasms, so does the world. But there are elixirs. There is cannabis to fight seizures, there are fathers to soothe and mothers to spoon, there are parents and educators teaching their kids honesty and virtue even in—and perhaps owing to—the absence of god in schools, because it is very simply the right thing to do. There is love to conquer hate, knowledge to erase ignorance, truth and fact to crush lies and rumors, compassion to smash fearmongers, misers and fools, virtue to rule over vice, and the voices, bodies and ballots of youth to enlighten, change and lead us, to liberate and save a convulsing world.


2.16.2018

gun-shy

My child would not know when or where to run and hide. He could not be kept quiet. He could not plead for mercy from the shooter to spare his life. He could not tackle an aggressor, shield a friend, close and lock a door, flee outside.

I ponder these terrorists, most of them white and male—extremists, racists, bigot, xenophobes—many, perhaps, with unstable minds. I dread the notion of a similar tragedy happening in my town, at my son's school where he'd be an easy target, easily sought out, easily found, easily gunned down.

No doubt the millions of thoughts and prayers have done nothing to prevent these tragedies, these mass shootings by angry boys and men who wield AK-15s. Perhaps it's true, to some degree, mental health is a problem, but insane people live in every corner of the world while our nation is an outlier when it comes to massacres and other deaths with guns.

Many conservatives doubt any measure can prevent mass shootings from occurring, save arming everyone. The fact is doing nothing ensures the epidemic perseveres. We've witnessed that truth too many times.

The second amendment was not intended to protect one's right to bear arms for sport or self protection. It was meant to form a well-regulated militia. Read the words. We should be gun-shy. We ought to stop fetishizing guns. We must reject the unfounded fear of others, of people different from ourselves. We must not yield to paranoia. We must not hold the perceived right to bear arms in higher regard than the right of innocents to their life, liberty and pursuit of happiness. We must change policy to reflect those values, to protect our children.

In this nation, too many people take their lives with guns. Too many toddlers shoot themselves, their siblings, parents, friends. Too many women are shot by abusive partners. Too many others are shot accidentally. We must stop this madness, change our nation's unhinged thirst for firearms. We should not think it's cool to own a gun.

But I feel a sea change coming—a blue tsunami—spawned by the wise, progressive youth in our nation. No doubt they'll be reshaping culture, climate and policy, and will curb the appeal and sale and use of guns.

Calvin years ago.

2.13.2018

whimpering

Ten p.m. Outside temps dip well below freezing, ice fractals crackle on the tops of blackish pools. The wind whips windows and tousles brittle limbs. Gray foxes, following footstep ghosts, trace a crusty sludge path in the snow around the house. Inside upstairs, Lincoln in the Bardo has been closed and set upon a dresser. Lights have been switched off. Three heads are weary and resting on ticking-striped pillows stuffed with goose down, plumped and rumpled into shapes made for dreaming.

Readily, sleep sets in.

In the room next door our boy cries out. Not a cry as much a spell of sickening retches as the seizure takes hold. Limbs stiffen. Breath snuffed out. Lightening-quick flickers of eyelids and gaping mouth, trembling limbs. Cheeks flush, lips tinge blue, fingers and lids pale and gray. Oxygen proves elusive. Consciousness gone. Guts twist and knot. Linens tint with bloody drool. Frankincense in drops on soles and toes.

Two to three minutes of this. Longer than most.

In its wake, every exhale is a whimper. Never heard this before. Misery in his mewling feels eternal. Lasts nearly half an hour. I ponder its root.

Bitten tongue? Jammed finger? Broken toe? Piercing ache or cramp? Frightened, muddled boy?

He puts his arms around my neck. Pulls me close. Knees up to his chest, still whimpering like a pup. I ask him in a whisper what is wrong. I murmur I am sorry. I stroke his face, rest my hand upon his hip. In the dim light, I can see him drifting off. Eyes closed, I heed his every breath.

            

2.12.2018

keen ideas

For three days in a row Calvin slept in my lap downstairs on the plush couch, waking only for a few moments at a time before laying his head down again. No fever. No cough. No runny nose. Just refusing food and not drinking enough. The few times he walked, he was weak and wobbly, and was spacey and pale at times as he sat idle in the middle of the floor. If it were not for the fact that he began showing signs of some kind of ailment prior to the seizures he had on his birthday morn, I'd think perhaps the culprit were my most recent batch of THCA cannabis oil which is slightly hazier than usual having used a different kind of oil.

Today Calvin seems much better, and although his balance is still off, he went to school and ate most of the food I packed for him, which is no small amount (my boy seems to have a fast metabolism.)

Lately, I've been more keen on the idea of taking care of my own body a bit better than I have these last several years. A couple of loved one's radical health issues, which landed them each in the hospital for surgery through no fault of their own, got me thinking—Michael and Calvin would be totally fucked if anything happened to me. With that angst-causing thought in mind, I'm keen on sleeping more, keen on drinking less alcohol, walking more, eating more real foods like fruit and fewer ones like chips. I'm keen on consuming more vegetarian meals if I can convince the chef of the house to let up a little on those winter comfort foods—namely pork and lamb—which he likes to cook, and I like to eat so much.

I used to regularly feel ten or fifteen years younger than my age. These days nearly all of my fifty-four years are palpable to me. Perhaps this feeling is partly due to the long winter, to being trapped inside and unable to move my body as much as I'd like to outdoors, what with all the ice and snow (I don't like exercising in groups or swimming indoors.) Perhaps it's these extra handful of pounds hugging my body and not letting go. No doubt it's cumulative sleep deprivation and the lack of sunshine we've had this winter in an otherwise decently sunny town. Chances are the stress of raising Calvin causes more gray hair to grow.

Thankfully, spring is on its way. And in less than two weeks Calvin will take his very last dose of benzodiazepine after ingesting them since he was three—nearly eleven years. Just that will liberate me! Hopefully he'll come off the bus in a few minutes with a smile on his face and walking steady and tall. With luck, as he grows (he is a foot shorter than I and nearly half my weight) I will become stronger still, something I'm very keen to do.

Photo by Michael Kolster

2.07.2018

fourteen

As far as I know there are no photographs of me holding Calvin the day he was born, a Saturday. Having arrived six weeks early and missing much of the white matter in his brain, he spent his first week in the neonatal intensive care unit where I held him infrequently, if memory serves. He was so fragile and "floppy," suffered from tachycardia and needed help breathing. I feared I would break or smother him. Michael did not take parental leave (I can't recall if it was available to fathers then) so he returned to work the following Monday to teach his college students the art of photography. Around the same time, I was released from the hospital to continue recovering from an emergency C-section. While Calvin remained in the hospital, Michael and I spent nights at the Ronald McDonald House three blocks away, and passed most of our waking hours tending to Calvin in the hospital nursery. The photo below was taken when Calvin was two or three weeks old. He was not stabile enough to bring home until seven weeks after he was born.

Today, on Calvin's fourteenth birthday, he suffered a grand mal seizure at three a.m., just a few days since his last one. I had begun writing this post yesterday, saying that I had a good feeling about February, in part because Calvin had not had any partial complex seizures since I'd dropped his Keppra dose back down a couple of weeks ago. This morning, however, in the wake of the grand mal he had a partial complex seizure in Michael's arms, one long enough for his lips to turn ever-so-slightly blue.

Unlike most parents who seem astonished at how quickly their children grow up, it's not hard for us to believe that Calvin is fourteen. Every year has been an arduous struggle, every milestone no matter how small has been years in the making, his development nearly plateaued. Every second expands into a sea of monotony. What is amazing to me is that Calvin survived his birth and has made it this far.

Fourteen is somehow special and simultaneously frightening to me. I know several parents whose children with epilepsy have died around this age. One drown during a seizure. Two died from pneumonia. A forth died from Sudden Unexplained Death in Epilepsy (SUDEP). A fifth succumbed to other complications from epilepsy. I am sure there are others who will come to mind later.

I'll be keeping our boy home from school again today. Michael just left to go pick up Calvin's birthday cake—carrot with cream cheese frosting—from a special bakery in town. Calvin will love the taste but will have no clue that it is his birthday. In two-and-a-half weeks he will take his last dose of Onfi, the benzodiazepine he needed to help get him off of the first benzo, Klonopin, that he was regrettably and unnecessarily put on when he was three. I'll keep looking for new remedies and hoping he'll make it to fifteen, which will no doubt prove to be light years away.

Epilepsy is a dreadful, heartbreaking, life-wasting disease. If you can manage it, please consider donating to CURE epilepsy in honor of Calvin's birthday by clicking here.

Photo by Michael Kolster

2.05.2018

in my shoes

If you were to stand and walk in my shoes, you'd see the world through the green eyes of a white woman who is five foot five inches tall on a good day, and fifty-four years old. If you were to stand and walk in my shoes, you'd see the world through the eyes of a mother who, in profound ways, lost her son the day he was born. You'd see the world through the eyes of a woman who thought she'd grown up in an all-American family, one that later fractured under the weight of decades-long grievances, grudges, resentments and contempt. You'd peer through the eyes of the youngest of six who tried to be the glue that held that family together and, though she hadn't been asked to take on the role, she now yearns to surrender.

If you were to stand and walk in my shoes you'd see the world through the eyes of a woman who—literally—swam a few too many painful miles, failed too many of life's trials, though perhaps gained something from effort and defeat. You'd see the world through curious eyes keen on travel, eyes that are drawn to others who—though they may look, speak, worship or live differently—like the rest of us, still love and hope, bleed and weep. You'd see the world through the eyes of a woman who makes friends easily, keeps promises, champions justice, and holds honesty, empathy and charity in high esteem. You'd see the world through the eyes of a woman who followed the man she adores to a remote state that at times, somehow, still doesn't feel all together like home.

If you were to have walked along in my shoes these past fourteen years, you'd see the love for a son who has suffered too many seizures, taken too many antiepileptic drugs, endured two awful benzodiazepine withdrawals, but is benefiting from cannabis oil. You'd see a teenage boy who can't quite ring a doorbell by himself, wears diapers, is still fed with a spoon, can't talk, can't dress himself, needs help walking and spotting up and down stairs, and doesn't know how to play with toys. You'd see a boy who likes nothing more than to walk, hug, hang out in the meat department, take baths and eat. You'd see into a soul that yearns for him to be well, to stop having seizures, to be able to say what is hurting, to have friends to play with, to be safe in the world.

If you were to stand and walk in my shoes, you'd see the world through cautiously optimistic eyes, though ones that have become somewhat cynical over the years. You'd see the world through a lens that is at times bitter and resentful, though immensely forgiving and grateful for the fortunes of a decent life—albeit one with a disabled child. You'd see the world through the eyes of a writer who tries to tell her son's story which is also her own, who lives for spring and flowers and sun, who pines for the West, and craves for the freedom to simply move about the world.

Photo by Michael Kolster