beautiful indifferent universe

Slowly, she walks by my side under a tar black sky, her blonde paws darkening with dew. It’s the biggest patch of universe I can view around these parts, skirted with white pines, maples and oaks all of a similar height. In the center of the sprinkling of stars, a swath of clouds is disguised as the Milky Way. Near the Northwest horizon I spot the Big Dipper, and above me is Cassiopeia, but I cannot find Orion, and I am at first vexed, then disheartened. For years now, in my fantasy, I've imagined Orion as Calvin's guard, rising over our house on clear winter nights, though I know there’s no such thing as a divine protector. I know because all I have to do is read the news about the shrapnel-hammered little Palestinian and Israeli children, the Kurdish children hacked into pieces with machetes, the sons and daughters dropping like flies from ebola, the Nigerian girls sold as slaves and raped as child brides, the boys taught to kill in the name of their God, the Sandy Hook Elementary School first graders gunned down by a disturbed young man who was once a child, the thousands of abused children, starving children, neglected children, diseased children, disabled children, chronically ill children—in my own country—little children like Calvin who are racked with seizures, some so severely that they don’t survive.

In the center of this vast grassy stadium, a ring of trees looking on, I can see our breaths as mist begins to hug the earth in pockets at the field's edges. I want to venture to its center where by day the athletes lope, out away from the glare of lights and the hum of air intake vents. But the harsh light grazes me no matter how far I go. Beyond the edges of the field I hear the drone of traffic but then I hear the night train whistling its orchestra of perfectly arranged notes and I think how artful the conductor must be, how he or she finesses the whistle into a crescendo like I’ve never heard before, and I am grateful.

I want the sky to be blacker, the stars brighter and more evident. Looking up to see the mass of them, knowing though not fully grasping their infiniteness, I feel insignificant and I think about other beings on other planets doing the same, as if looking through a window or perhaps into a mirror. Then I consider those who believe life exists only on Earth and I muse over such conceit.

Then, as I stand scratching Nellie’s head, I wonder if on those billions of other planets little innocent beings are suffering, ill, exploited, abandoned, murdered, and I dread the thought because it’s clear to me that the universe, though long ago set in sublime and beautiful motion, remains silent and indifferent to our pleas.

photo by http://favim.com

back to school bid

Dear HBS School Teachers and Staff,

Now that the school year is off to a good start, I want to extend an offer to visit your classes, as I have for the past several years, to tell you and your students a little bit about my son, Calvin Kolster, about his disabilities and his epilepsy.

Calvin, whom I imagine many of you have spotted as he happily ambles or trikes down the hallways with his ed tech, Mary, is ten, though he cannot walk completely unassisted, cannot talk and remains in diapers.

I make this offer because I have learned over the years that Calvin is an enigma to most, and since he cannot speak for himself and tell other children about himself, he remains a mystery of sorts. I think we all know that fear of the unknown and of things or people different from ourselves can sometimes lead to misunderstanding and, in the worse cases, marginalization and cruelty. Fortunately, Calvin has never been bullied, though it is difficult to know if he is a victim of unfettered, caustic ridicule. The teachers and the students with whom I’ve visited appear to come away with a better understanding of Calvin and a desire to be his friend.

I also discuss epilepsy, which is Calvin’s biggest challenge in that he suffers regular seizures despite taking several powerful anticonvulsant medications that affect his balance and his behavior. Epilepsy is a pervasive disorder that affects nearly 1 in 100 people of all ages, and 1 in 26 of us will be diagnosed with epilepsy at some point in our lifetime. People with epilepsy suffer from its stigma, are often feared, shunned and mocked, even in this day and age. What I try to do when I visit classes is to help students to understand how Calvin is different from them, how he is the same and what epilepsy is. I tell them that, statistically, there are likely more than a handful of individuals, including students and teachers, at HBS who have epilepsy though it isn’t plain to see. My visits usually last for thirty minutes, more than half of which is spent answering the students' thoughtful questions.

My main hope in visiting the classes, beyond raising epilepsy awareness, is to promote understanding and compassion for those like Calvin who are different on the outside. In the past I have visited the classes of Ms. Orr, Mrs. Andrea Wilson, Mr. Shea, Mrs. La Point and Mr. Sullivan. I encourage you to ask them about the experience, and I hope very much that you will invite me into your classroom. If so, simply send me an email.

To learn more about Calvin and epilepsy, feel free to read, and share, my blog: http://www.calvinsstory.com

Best of luck with all of your endeavors. Hope to see you soon.
Christy Shake
Calvin Kolster’s mom

photo by Ann Anderson

all things good

warm, foggy, still nights. kisses from calvin. rain. bourbon on ice. flame colored foliage. dappled light. wet bark. twelfth anniversary. happenstance. warm lights. naps. music. surprise visits from well-loved friends. green. hydrangeas fading to pink. fires in the wood stove. cafe creme. mayonnaise and mustard, in general. johnny cash. fuzzy doggy licking my face. honesty. frangos. the aroma of sautéed onions and garlic. smiling, giggling boy. bucheron. seventy degrees. handsome husband's hugs. cannabis oil. forests. walking to the playground and back with a willing boy—albeit not playing. altruism. wind. rigatoni with spiced lamb meatballs in tomato sauce. relative calm. eating in the screen porch after dark. soundly sleeping boy. côtes du rhône. indian summers. black star-studded sky. crickets.

dear docs: calvin and cannabis

Dear Deb, Katie, Dustin, Peter, Keelyn, Elizabeth and Tricia,

I am writing because I thought you might be interested in hearing an update on Calvin’s experience using cannabis oil to treat his intractable epilepsy. Feel free to share this with your colleagues.

A BRIEF HISTORY
After being diagnosed with epilepsy when he was two, Calvin was put on Trileptal for a few days before switching to Keppra because of a bad reaction to a prescribed, though erroneous, overdose of Trileptal. Within six months he maxed out his Keppra dose while still suffering frequent bouts of status epilepticus, which always landed us in the PICU. Depakote was prescribed next, on which Calvin became a zombie, lost many emerging skills and began showing initial signs of liver failure. At that point, when he was three, he began the LGIT along with Lamictal, Klonopin and Zonigran, and at high doses of all three, particularly the Lamictal, he began having intense tonic-clonic seizures regularly, rather than the milder, complex partial ones he had been suffering most.

Less than a year after staring the LGIT we switched to the more rigorous Ketogenic Diet. Calvin gained a lot of weight and the diet never put a dent in his seizures; he continued to suffer about a dozen or more each month. He was lethargic and floppy and though his AED doses remained the same, lab tests revealed that, while on the diet, his AED blood levels had increased by as much as thirty percent. We began slowly weaning him off of Klonopin to improve his balance, sharpness, muscle tone and stamina, but during the withdrawal his seizures doubled and he stopped eating everything but yogurt. At that point we started him on clobazam to ease the wean and control his seizures. It helped, though I feared another benzodiazepine.

Since Calvin was not benefiting from, or tolerating, the Ketogenic diet, after eighteen months we began weaning him from it. Eventually, we also weaned him off of Lamictal and Zonegran, and for a few months he did well on clobazam alone, though eventually, even at a high dose, the seizures slowly increased. We added Banzel and maxed out that dose before also adding Keppra again. On that three-drug cocktail he had decent, though not perfect, seizure control, but his behavior became intolerable with frequent bouts of mania, constant hyperactivity, terrible sleeping patterns, poor focus, persistent drool, persistent rash, agitation, aggression and anorexia, not to mention likely headaches and serious gastrointestinal upset.

Calvin’s frenzied behavior forced us to wean him off of the Banzel. His appetite improved and he became slightly less manic. Since coming off of the Banzel Calvin has experienced anywhere between one and five seizures in any given month. From August 2013 through January 2014, on 32.5 mg clobazam and 1625 mg Keppra, Calvin had an average of 3.3 three-minute tonic-clonic seizures per month.

THCA CANNABIS OIL
In February of this year, thanks to the advocacy of Dr. Hagler and Dr. Morrison, I began making a THCa (tetrahydrocannabinolic acid, a non-psychoactive cannabinoid thought to be helpful in controlling seizures) cannabis oil for Calvin using a simple, tried and true recipe I found through extensive research and social networking. We started Calvin on a few drops a day and have slowly increased to a little more than 2 mls per day. Tests from two different labs have shown that my various batches of oils, which I now make almost monthly, contain roughly +/-18mg THCa and +/-3mg THC per ml. This equates to slightly less than 1mg of THCa per pound of Calvin's weight. Other cannabinoids are minimal. Calvin tolerates the oil well and, upon starting it, exhibited improved sleep, focus and calm as well as significantly improved daytime seizure control.

SEIZURE ACTIVITY
Since starting the THCa cannabis oil we have weaned Calvin off of more than 40% of his clobazam. Considering his weight gain, his clobazam dose is half of what it was a year ago. From February to August Calvin experienced an average of 4.1 seizures per month, a slight uptick compared to the prior six months, but considering he is on a serious benzodiazepine wean, I am encouraged.

The most remarkable result I can share with you is that, since adding a 4:00 pm dose of THCa cannabis oil, Calvin’s frequent evening seizures (for over three years his seizures occurred exclusively between 5:00 and 6:30 pm) have gone from one every five to fifteen days to one every thirty-five days or so! However, his seizures have migrated to the very early morning likely due to the fact that we have avoided dosing cannabis oil in the middle of the night for fear of aspiration. I am considering supplementing his regimen with some other kind of cannabis therapy, perhaps adding a high CBD oil to his bedtime dose, but I have more research to do before I commit.

IMPACT
Since starting the cannabis oil and since beginning to wean off of clobazam, not only have Calvin’s evening seizures greatly decreased, but his behavior, focus, balance, stamina, mood, walking and willingness to walk places, have improved greatly. He is calmer and happier, is beginning to make new sounds, and we are all living a much improved quality of life as a result. I am beginning to feel like I am getting my Calvin back again.

Who knows what the effects on Calvin’s brain and development have been from using psychoactive anticonvulsant pharmaceutical drugs for over eight in ten of his most formative years. I can tell you, as a mother, I fear the drugs may have caused as much damage and suffering as the seizures themselves and have ruined his quality of life. They’ve caused headaches and dizziness, gastrointestinal upset, confusion, mania, lethargy, anorexia, apathy, and who knows what else. What I am seeing from the cannabis is different, positive, and I wonder what might have happened if we'd never given him drugs in the first place.

I hope this helps you all and, in turn, helps the patients you care for.

I invite you to read a recent blog post from a friend and mother whose severely epileptic child is also greatly benefiting from cannabis oil therapy. Ours are just two of hundreds of success stories you'd benefit from hearing.

Sincerely,
Christy Shake

chem-free

With Nellie at my side I stroll down the knotted sidewalk crushing every intact acorn I come across. Crunching them under my boots feels satisfying, especially if I can get my heel into them solidly and splay their shells in one sharp crack. We head toward the athletic fields, where I hope to let her run free and safe from traffic, but as we round the corner we are met by throngs of sports fans, and I know I must keep her on the leash.

We get lost in a scrum of runners in short shorts, t-shirts and tanks, coaches in ball caps and interested spectators, some with cameras and a few with dogs on leashes. Students from various colleges are ringing cowbells and blowing kazoos as the young athletes sprint between yellow ropes and orange cones toward a finish line painted in the grass.

Suddenly, I am trapped on the bank beside a stream of runners, their steely legs and lungs pumping, their cheeks flushed, hair tousled. A sharp twinge of sadness and loss thickens my throat. I can’t hold back the tears knowing I’ll never watch my son perform brilliant physical feats like this—the athlete in me selfishly, achingly wanting an athlete in my son. I realize I have nothing to do with these people, these proud students, beaming parents and coaches. Every year the students come here to run. Every year I see them. Every year I feel the sting.

I take Nellie home the back way, through the field behind our house that boasts the college’s beautiful organic garden and its chem-free dorm. Three female students huddle outside the renovated building lighting up cigarettes and I wonder why such smart kids—young adults, really—make such stupid choices to smoke. As I watch them take drags between their thin fingers I wonder, now that they’ve started, if they’ll ever be able to quit. Then I wonder what chemical-free actually means. Then I think about my ten-year-old son who has never in his life been chem-free, though not by choice, and as the students inhale and cough, I feel annoyed. But then I feel a surge in my impulse to get Calvin there—chem-free—at least from pharmaceuticals.

The following day, on 50% less benzodiazepine than he's been on for years, Calvin walks further than he's ever walked in our neighborhood: in all, a good part of a mile. He's making such strides! Hand in hand we pass some of the college students. The handsome young men greet us with smiles and ask us how we are doing while the women, most of them, avert their eyes. I wonder which ones are runners, which ones are swimmers and I wonder if they, or their parents, know how lucky they are.

If you cannot view this video you can watch it on You Tube by clicking here.

Calvin learning to walk at 2 1/2 years. He was already taking a high dose of Keppra which still didn't keep his seizures at bay.

plan of action

After three consecutive nights of getting up almost hourly to settle and reposition my son in his bed, and after a day of hearing him whine, the seizure finally took hold. Michael was sleeping with Calvin when it happened in the early hours of the morning, which is when most of them are happening now. I ran downstairs to grab the vial of my homemade THCa cannabis oil in the fridge, came back up and squeezed twenty drops into Calvin’s mouth, just at his gum line, hoping to prevent a second seizure. Then I crawled in next to him and waited for his aftershocks to pass.

Lying next to him and feeling his shallow breathing and his shivers and jerks, knowing their neurological origin, is terribly unsettling. But this time they led me to a better understanding of what steps I must take to try to deliver him from his suffering. My plan of action is to finally begin giving him drops of a high CBD (cannabidiol) oil at bedtime. I’ve decided to simply swap a few drops of THCa oil for the CBD oil so as to avoid layers of additional treatments. I came to this conclusion after months of thought, discussions with Michael and with the recent input from my nephew, Max, who seems to have a budding analytical mind, too. I have been advised by some against doing this, against changing more than one thing at a time, but in my mind and in this case it makes the most sense. While experimenting with the CBD, however, I will likely suspend the benzodiazepine wean, at least until I can get a sense of whether the CBD is helping or not.

The only factor that remains uncertain is where I will be getting the CBD oil. I have several options: I can make it myself; I can get it made by a local caregiver-grower; I can wait for Charlotte’s Web to become available this fall, perhaps as early October; I can order it from Synergy in California, or; I can try to connect with The Cannabis Man who I have not heard from in three months, which saddens me to think that was maybe just a pipe dream.

No matter which path I decide to take, however, I am forever hopeful. Calvin's benzodiazepine wean, now at roughly 50% his highest dose, has given our boy a better quality of life, more stamina, less irritability and increased focus. I look forward to giving him his last dose, whenever that might be.

After I crawled in next to Calvin, whose rolling shudders caused me to feel deeply despondent, I whispered for Nellie. She quickly came to Calvin’s bedside where I was able to reach out and pat her on the head. In the dark she licked my hand. This, and the knowledge that I have what seems like a reasonably sound plan in place for my boy, helped me to fall asleep with the hope that things will get better.

Calvin did not have a second seizure. At least, not yet.

photo by Michael Kolster

i'm not a doctor, but.

Written by Elizabeth Aquino in her blog a moon, worn as if it had been a shell

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months.

Melissa Healey, The Los Angeles Times

September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures.

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy.

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable?

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.

photo by Michael Kolster