12.19.2014

letting go

Except for a glimmer of hope when Calvin was almost three—before the debilitating, multiple antiepileptic drug cocktails and the regular tonic-clonic (grand mal) seizures—I've never been quite sure the day would come when Calvin would be walking more often without assistance than with it.

Thanks to cannabis for allowing Calvin to cut his benzodiazepine dose in half and for Mary, his awesome one-on-one, who first saw his latent potential for walking independently re-emerge, and for trusting it. In great part because of them we can finally take a deep breath and, even if just a little, start letting go.

Calvin at school the other day with his best buddy, Mary

12.18.2014

our five percent boy, cbd and the dosing dilemma

Shortly before Calvin’s birth, sometime around the wretched, nightmarish 33rd week of my pregnancy, the neonatologists who helped decide when to take him—by scheduled c-section—told me and Michael that only five percent of babies born at 35 weeks need help breathing. We were encouraged. But shortly after Calvin was born he required surfactant for his lungs to properly inflate before being put on a respirator for sixteen hours during the first day of his life, and then on a CPAP (continuous positive airway pressure) for several more days. Since then, we have called Calvin our five-percent boy.

It has seemed that any time we learn there is a rare chance of succumbing to some affliction, Calvin does. Besides a host of neurological deficits, including being legally blind times five and suffering intractable epilepsy since the age of two, Calvin has never learned to talk, he’s had double ear infections, pneumonia, bronchitis, reflux, slow gastric emptying, urinary tract infections, roseola, two kinds of hernias, a broken tooth, scoliosis and a laundry list of side effects from anticonvulsant drugs—including dangerously high liver functions—which, at high doses, still don’t seem to stem his seizures. I imagine that many of these afflictions are suffered by more than five percent of the population, but as we’ve raised Calvin it sometimes feels like we just can’t catch a break. If it's not one thing, it's another. I keep hoping that the five-percent theory will work in his favor for once, perhaps with cannabis.

The other day we switched Calvin from a very dilute CBD (cannabidiol) cannabis oil to a slightly stronger one made by our local dispensary, augmenting the homemade THCA oil I’ve been giving him since last February, which has gradually helped him cut his benzodiazepine dose in half. Though stronger, this CBD oil has a mere four mgs of CBD in one milliliter of oil. To compare, Charlotte’s Web, the CBD oil many seizure-racked children in Colorado and California are benefiting from, ranges from 50 to 200 mgs per milliliter. Another way of looking at it is dosing. We started Calvin on 0.1 mg of CBD per kilogram of his weight, or slightly over 2 mg of CBD per day. One child I know of who is Calvin's size is taking 5.5 mgs of Charlotte’s Web per kilogram of her weight, or 125 mgs CBD per day—nearly sixty times the amount that Calvin is starting on! Luckily, she was gradually able to come off of all of her pharmaceuticals, though not without hardship.

You can see we are starting very, very cautiously, at the lowest effective dose that our beloved Dr. Dustin Sulak has seen. This “less is more” theory has been backed by the creator of the THCA oil recipe I’ve been giving Calvin, and it makes a lot of sense to me. Whether we’ll actually see results at very low doses is another thing because Calvin, unlike a lot of other children (probably 95 percent of them) seems to require unusually high doses of medications to get any palpable results.

One advantage I see in starting low is the reduced chance of any serious side effects from CBD’s interaction with Calvin’s other anticonvulsant drugs. The other advantage is finding a sweet spot of seizure control without using excessive amounts of cannabis which, in turn, equates to excessive amounts of cash since it isn’t covered by insurance. I suppose the converse would be to hit Calvin with a huge dose of CBD hoping to knock the seizures out, and then scale back on the dose if possible. If Calvin weren’t taking two other anticonvulsants I might consider that strategy, but the sorry truth is that he is, so we are stuck in the slow lane.

So, I am crossing my fingers hoping that, if there is even a mere five-percent chance that this low dose of high CBD oil can reduce or even stop Calvin's seizures, it will. Luckily, we've got plenty of room to move up.

jar of high cbd cannabis oil

12.15.2014

because

Saturday, mostly because of chronic sleep deprivation, I felt exhausted, but I had to push through it to prepare for an intimate holiday gathering for some of our closest friends and neighbors. Because of Calvin’s hysteria I dreaded a seizure. Because our beloved nurse Barbara gave her two-week notice shortly after she walked through the door I fell deeper into the grips of angst and sorrow. But because of a long list of simple delights—not including the seizure Calvin did indeed have during the party—I managed to lie awake for hours next to him listening to the music throb downstairs and to voices of our friends mingling and just be grateful . . .

. . . because madeleine’s magnificent ways. because kim’s compassion. because jeff’s funny tale about dog shit on his shoes. because michael’s holiday cookies. because john’s charming smile. because keisha’s bodaciousness. because teresa’s honest beauty. because stefanie’s guacamole and rustic chips. because jane’s simple sweetness. because fabian’s lesson on single malt scotch. because bridget’s candles, and titus too. because catherine’s christmas cookies. because bill's good nature. because seventies songs. because leah’s lushness. because alex’s relaxedness. because jill’s gravid belly. because tricia’s aura. because dewitt’s charm. because adrian's christmas sweater. because henry’s hulking hugs. because tim’s kindliness. because brian crashed that party so many years ago. because peter, what more can i say? because candlelight. because megan’s simple beauty. because barbara’s ravishing red dress and loveliness. because m&ms. because nellie. because joanne’s joviality. because sarah’s bright eyes. because mary’s sequins skirt. because backyard bonfires. because stephen’s chivalry. because jen’s generous warmth. because accra’s prosecco. because mark’s compassion. because bourbon on ice. because brian’s way too easy hard cider. because kevin’s esprit. because jackie's curls. because vlad, just vlad. because ta’s arrival. because laura’s luminosity. because david’s nutty nature. because somebody's badass brownies. because connie’s cheerfulness. because mustard. because martin’s wit. because matt’s bromance. because karen’s spirit. because kathy and her fuzzy sweater. because spiral cut hams. because barbara. because jen’s brains and beauty. because michael’s heart. because lauren’s tenderness and patience with me, michael and calvin. because calvin and climbing into bed next to him. because new friends, including jens, and old friends and friends who, most regrettably and quite inadvertently, were left off of our guest list. sorry.

. . . because cannabis, and because calvin didn't have a second seizure and seemed to wake up feeling okay.

12.13.2014

foreboding:

the awful feeling that it is coming tonight and there is nothing that I can do to stop it.


12.09.2014

the quality of cannabis

This morning I read a report about cannabis and its affects on childhood epilepsy. The findings appeared mixed, though I felt as though its authors were trying to play down cannabis’s efficacy while highlighting possible, yet undetermined, downsides such as liver problems and effects on brain development, (as if those aren't two detrimental consequences of many, if not most, antiepileptic pharmaceutical drugs.)

As I prepared Calvin’s lunch, an ice storm brewing outside, I wondered if over time Calvin might begin to have trouble with his liver because of the cannabis oils.

“It wouldn’t be the first time,” my husband reminded me.

No. It wouldn't. The first time we saw initial indications of liver problems was when Calvin was just three years old. He’d been taking Depakote, the third anticonvulsant he’d been prescribed within a year of being diagnosed with epilepsy. Depakote wasn’t working to control Calvin’s seizures, though it was doing a great job of sedating him and robbing him of skills he had just begun to learn. While in the hospital after a bout of status epilepticus his neurologist informed us that he was switching Calvin to a new drug, one called Lamictal. But because it would take several weeks to safely titrate to a therapeutic level of Lamictal in order to avoid serious, if not lethal, cases of toxic epidermal necrolysis or Stevens-Johnson syndrome, Calvin had to temporarily remain on Depakote.

The neurologist ordered a Depakote blood level. I asked the phlebotomist if they were also going to test Calvin’s liver enzymes, aware that Depakote was known for wreaking havoc on the livers of kids like Calvin. She told me, no, that the doctor hadn’t ordered them. I insisted she take them because Calvin was a hard stick—difficult to draw blood from easily and painlessly—and I didn’t want them to later require a second blood draw. She relented and took the levels, which came back ten times higher than the normal range, indicating impending trouble. The doctor had no choice but to take Calvin off of Depakote immediately, replacing it with two additional drugs—one, a benzodiazepine related to Valium.

As freezing rain glazed the streets and sidewalks outside varnishing bows and branches with ice, I continued to think about the cannabis. Since having started Calvin on a second oil a month ago, one high in CBD and CBDA, he seems to be happier, calmer and more alert, even sleeping slightly better at night. These are the same kinds of improvements we saw last spring almost immediately after starting him on a cannabis oil high in THCA, which he is still taking. It’s too early to tell if the new oil is lessening his nighttime seizures since, in the past several months, he has them only every six to nine days. But I am cautiously optimistic since I am seeing other improvements, like less self-stimming such as finger snapping and eye poking and reduced mania in the days leading up to a seizure. Luckily, Calvin is on a very small dose so there is lots of room to move.

I talked with Michael further about cannabis’s unknowns, and wondered how I would feel if Calvin died from liver failure if it were the result of giving him cannabis oil, (though it can as easily happen because of the benzodiazepine he was prescribed years ago.)

“He has seemed so much happier lately,” I remarked while watching Calvin spin in his johnny-jump-up mouthing his blue football with abandon, “and he seems to have an improved sense of well-being.”

Michael agreed, and in doing so reminded me that in life, when it comes to quality versus quantity, we’ll always choose quality. And as far as I can tell, since starting cannabis, Calvin is experiencing a whole lot more in the quality department.

12.06.2014

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing. 

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. Within minutes the spasms had subsided and he fell asleep on the couch.

Around the same time, a man named Eric Garner and a man named Michael Brown also stopped breathing.

The seizures continue to batter my son every six to nine days, though now they occur almost exclusively in the middle of the night. Calvin had a couple of grand mal seizures two nights ago, but I'm confident that if in their aftermath I hadn't given him extra doses of my homemade cannabis oils while lying in bed next to him he'd have suffered a third one.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our ten-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun. stop shooting. officers, why do you have your guns out? please don't let me die. what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath.

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the white police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are white-world problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a person of color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by white law enforcement officers and a white criminal justice system, to live in a country where most white people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my friends and it is a problem that is not simply going to disappear until white people start to understand there is a problem, until, perhaps, white people start to feel uncomfortable, which is little to ask considering what black people have had to endure for four-hundred years.

The night after the Grand Jury declined to indict the white police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am white, which is not to say I am proud to be white. I can go to our local dispensary and purchase one ounce of the best cannabis bud which fills more than half of a large mason jar. I can transport it home in its white paper bag never giving it a second thought. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my ten-year-old son's epilepsy? On the way home, would I be pulled over for, as some say, driving while black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over the injustice, be seen as belligerent, be cited, be assaulted, be arrested, be put in a chokehold, be thrown in jail? Would they shoot me while I reached into the glove box to get the car's registration? Would my last words be, "I can't breathe"?

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12.02.2014

depth perception

In high school, I had a handful of very good teachers who disciplined me in the subjects of English literature, creative writing, math, history, Spanish and anthropology. I remember them—the best ones having wicked senses of humor—as much, if not more than the details of the subjects they taught.

Very recently, I reconnected with my anthropology teacher, Thad McManus, on Facebook. I didn’t know him well and I doubt he remembers me at all, let alone as one of his most sophisticated students. I was the jock who sat near the front of the class with wet hair in an over-sized varsity letterman's jacket.

Over the years, I’ve often recounted something I learned in McManus’s class, something about perception. We’d been assigned a book to read by an anthropologist who had spent years living amongst a Pigmy tribe inhabiting the dense rainforest of Central Africa, Indonesia or Papua New Guinea, I can’t recall which. The author described a day when he took his friend, one of the tribe’s elders, beyond the rainforest onto an open plain, a place where no tribe member had ever been. The two men perched themselves atop a high bluff overlooking a valley where, off in the distance, a large herd of water buffalo were grazing. The Pigmy elder reached out and tried to pinch several buffalo between his fingers, thinking they were ants. It became clear to the friends, and later to my classmates and me, that the Pigmy people hadn’t fully developed their depth perception due to the density and sameness of the forest in which they lived.

This image stuck with me and has, over the years, helped me to understand how often people’s perception is limited to their own experience, to who they are and what they see in their immediate surroundings, in their neighborhoods, on television, in the books they read and in the news sources they choose. I witness this kind of insularity when it comes to my ten-year-old son Calvin, a rarity who is severely disabled, can’t talk, walks poorly and peculiarly, wears diapers and is often prone to fits of mania due to impending seizures and to the powerful antiepileptic drugs he must take. I sense it when strangers stare at us—even glower at us—when he is shrieking or simply stumbling past. I sense it with people's puzzlement over the fact we didn’t have more children when we found out Calvin would be disabled. I sense it when people say everything happens for a reason or that Calvin's suffering is meant to teach us something, or when doctors tell me not to overreact or bristle at my insistence. I sense it when people question my hypervigilance, my frustration, my impatience, my anger. Because of their shortsightedness they aren't seeing the big picture—why I am who I am, why I act how I act, why I parent like I parent—because they don’t live with and love a disabled, chronically ill child. Thankfully, there are the insightful ones who choose to look beyond their own experience to see and feel our world and, thus, can empathize.

So, too, I sense a deficit of earnest perception surrounding the recent events in Ferguson—the shooting of the unarmed black teenager Michael Brown, the subsequent decision not to indict the white police officer who killed him, the protests, peaceful and otherwise, and the fallout in the news, on talk radio, in coffee shops and classrooms and on social media. What has come into sharp focus for me is that many Americans aren't seeing past their snug environs and are in great denial of our nation's systemic problem with racism. Others don't appear to give a shit. What I see a lot of is this: standing ground; slinging armchair indignities (think Archie Bunker); blaming and dehumanizing the black victim; characterizing the Ferguson killing as an isolated incident thereby rejecting the epidemic of racism; derailing the discussion of white cops killing unarmed blacks into a reproof of black on black crime (itself a product of the systematic oppression of minorities); ignoring our nation’s gross, racist inequities in housing, education, employment, income, law enforcement, imprisonment and sentencing and escaping down the comfortable path of scapegoating.

But when we step out of the shadows and the shade of the forest we can see the bigger picture, one that is vast, varied, colorful and perhaps difficult to understand unless we are willing to take a closer look. With a morsel of scrutiny we can see an establishment that is stacked against an entire race, a people systematically exploited in the days of slavery and whose descendants, for whatever lingering bitterness, profit, power or cruelty, continue to be quashed.

Thirty-three years after my high school graduation, I find myself back in the classroom, though not to study anthropology. I'm here to tell Calvin's classmates about him and about epilepsy. When I visit the students I always end our discussion by saying that Calvin is the best person I know, in part because he doesn't have a mean bone in his body. I tell them to be kind to others who are different from them, because it is a great big world out there and no matter who we are, what we look, sound or act like or where we are from, it is important to understand and remember that inside we all have the same heart. To do this is to beautifully utilize the full depth of our human perception, which allows us to see other worlds and realities with open eyes, minds and hearts.

photo by Michael Kolster