9.18.2014

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

9.15.2014

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.

9.13.2014

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

9.12.2014

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.

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

9.08.2014

last days of summer

My wonderful, week long visit with our nephew, Max, is coming to its end, as are the warm summer nights, picnics, boat rides, barbecues and the luxuriousness of late evening twilight skies where bats flit and dive in loops above our heads. Soon, the crickets’ orchestra will fade to a single chirp, then simply dissolve into the buzz of nearby traffic and the happy babble of students. Spotted brown spiders pepper themselves between dewy shrubs waiting for their prey and, one by one, the leaves are beginning to yellow.

It has been a decent summer, considering the painful act of weaning our son from a protracted benzodiazepine seizure therapy. We are seeing our former, calmer, boy slowly emerge from the drug’s veil of dizzy mania as we nudge its way down the syringe by degrees.

This morning, gazing out the kitchen windows at the backyard garden and to the field beyond I see the college students—our new neighbors—walking and riding bikes along a nicely curved asphalt path that had been laid down this summer. The path leads from the former retirement home, now a newly renovated thirty-bed dormitory, toward the main campus. It meanders past the old, white one-room school house—a stone’s throw from our back yard—aside a large, neatly kept bed of basil, beets and lettuces edged with a ruff of yellow and magenta zinnias. Seeing the students and having heard them gleefully partying on Friday night, I feel a twinge in my heart knowing Calvin will never be amongst them.

I sit drinking my coffee wondering if I’ll be taking care of Calvin for the rest of my life or if he’ll be able to live in some sort of group home or if he'll survive past childhood. At this point, it’s almost certain he will never be potty trained and I wonder what kind of person is up to changing adult diapers. I fear he’ll continue having seizures and doubt anyone would be as hypervigilant about their treatment and control as I. I consider how loving Calvin is and how much easier it’s becoming to love him back in the midst of his renewed calm. Now, he sits on my lap for several minutes, hugs us for long periods of time without pulling our hair, seeks us out to embrace. Who will do that with a grown Calvin when we are gone? He won’t always be a cute little kid. He’ll likely become a grown man with a big voice and lots of hair, but inside he’ll still be like a child. Who will love him and hug him and kiss him then?

As I write this I see a greeting card recently sent to me and Calvin from a woman who read my piece in The Sun magazine. The kind words she wrote about my writing and mothering made me teary. Then she said:

We made a donation in your name to your CURE page. I hope it goes towards researching ways to help you be seizure-free and at peace and happy.

Rereading the card reminded me that Calvin’s happiness and peace in this life are really the only things that matter. It doesn’t matter that he can’t read or write or throw a ball or ride a bike or swim. It doesn’t matter that he won’t go to college, play ultimate frisbee and party down with the co-eds. What matters is he can enjoy a summer day and the sweet cold of an ice cream cone. What matters is he can walk hand in hand with his dad while delighting in the sounds and smells and the crazy chaos of a summer fair, of children squealing on the midway rides, of bleating sheep, barking dogs and mooing cows. What matters is he can revel in the hugs and kisses of his family, then, after a long, luxurious bath, he can curl up and fall asleep in the fading light of the last days of summer, a cool evening breeze drifting across his tired legs, soothed by the chirp of crickets though not knowing at all what they are.

9.06.2014

other child

Flanking a day that began with a seizure at 2:45 a.m., followed by another at 6:15 a.m. then a third, which occurred in the bath at 4:15 p.m., we were lucky enough to enjoy some splendid days under the sun with our new dog Nellie.

I'd visited Calvin on his first day of school and had commented on how quiet he was sitting in his chair by himself in the front of the class. I'd crept up behind him to give him a smooch on the cheek. "He's got seizure breath," I told his teacher, and explained that that usually meant he would have a seizure later in the day, if not the next.

When Calvin got off of the bus and was walking up the stairs of our deck, Nellie sniffed his knees and elbows and tummy and arms like I hadn't seen her do before. It was as if she was smelling another dog, but my guess is that she could smell the seizures coming, too.

All three seizures were slightly convulsive and several minutes long. As usual, Calvin stopped breathing long enough for his hands to turn the sickening blue-grey of a corpse. He startled and writhed and twitched. An hour after the second one he woke crying and began to vomit. All day long he was whiny and irritable, not wanting to walk at all. The next day he didn't utter a peep, didn't smile, couldn't walk well and I wondered, after those three bad seizures, if I'd ever get my Calvin back again, if the cannabis had stopped working or if the benzodiazepine withdrawal would continue to wreak this kind of havoc on our lives.

Thankfully, through all of it, Nellie kept our spirits from sinking into the abyss. It amazes me what the love of a good dog can do for chasing the blues away. Just watching her makes us smile—the silly way her ears flop when she runs, the wide grimace she has on her face when she pants, the goofy way she looks when she is wet. An Italian woman I met at a park with Nellie last week asked me about Calvin and if I had other children. "No," I'd said, "thankfully not," then I went on to explain the complexity of that decision and its sad repercussions. Pointing to Nellie, who was nuzzled in next to me on the blanket, the kind woman said, "I think she is your other child." I smiled, figuring she was probably right.

9.01.2014

summer swelter, seizures, clobazam and cannabis

By evening, everything had melted in the summer swelter—the butter, the plants outside, me—and the glass wall barometer’s blue water dipped well below normal. I was in the middle of mixing myself a bourbon with ginger beer on ice before making Calvin’s dinner, and Michael was beginning to cook ours. Calvin was screeching and spinning in his johnny-jump-up, though not all together happily. He’d had an off day, whining at every turn. When he became silent, I peered around the refrigerator to check on him and found him dangling, jackknifed in his jumper like some neglected marionette, his contorted limbs jerking in rhythm. We dropped what we were doing and ran to his aid, where we had trouble prying his stiff body from the jumper, its padded fabric crotch clamped between his rigid legs.

I couldn’t really tell if or when the seizure was over; Calvin’s color came back but his face, fingers and legs randomly twitched for minutes. I gave him several drops of my homemade THCa cannabis oil, which, after a couple of minutes, seemed to assuage the tiny spasms. It was nearing five-thirty, so I decided to give him his nighttime dose of benzodiazepine early, happy that he was able to swallow the thick, milky liquid before drifting into a post ictal sleep.

It had been thirty-five days since Calvin’s last dinnertime seizure, the third or fourth time he’s gone that long between them since shortly after starting the THCa cannabis oil. Before that he’d been having them every five to fifteen days. And though we’ve weaned him off of 40% of his benzo, clobazam, we aren’t seeing a definite increase in overall seizures. However, the seizures have mostly migrated to just before dawn, likely because we don’t give him cannabis oil in the middle of the night—at least not yet—for fear he’ll struggle and or aspirate. Therefore, he’s still having three to five perceived seizures every month, though they have flattened, calmed.

School starts tomorrow and I am welcoming the quiet time to myself. Delightedly, Calvin will have the same teacher and the same one-on-one that he did in previous years. It has been a bit of a rough summer, in that the home health agency never found us a second nurse to fill Calvin’s allotted hours, without which I have had little time to do things like garden, write or ride my motorcycle (which is thusly for sale) or even to wash dishes or do laundry. Luckily, the addition of THCa cannabis oil and the significant reduction of benzodiazepine have both seemed to improve Calvin’s quality of life and ours. For the most part he is less stubborn and has much better balance. His drooling has decreased and the persistent rash on his chin has mostly disappeared. His stamina and his willingness to walk hand in hand down the street or in the grocer or at the fair or at the park has markedly improved, and his hyperactivity has cooled some. Regrettably, it will be another year before he is completely off of the drug since a painfully slow wean is the only safe way to come off of a benzodiazepine.

The other day Michael and I had a good conversation about epilepsy, pharmaceuticals and cannabis. We agreed that, if coming off of pharmaceuticals could improve Calvin’s development enough for him to learn a handful of words, for example, we’d exchange that for a few extra seizures. We wondered why not starting him on antiepileptic drugs was never offered as an option to us when he was first diagnosed and why we didn’t consider it ourselves. We wondered why no neurologist talked to us in depth about the risks of long-term use of benzodiazepines. We complained that no neurologist told us that weaning clobazam would be easier if Calvin took the liquid form reducing by small increments as opposed to large decreases in unevenly cut pills. We realized that we are starting to think that Calvin’s seizures may never abate and that an improved quality of life should be the goal. As long as he has epilepsy, no matter how many seizures he has, he is at risk of dying from SUDEP, sudden unexplained death in epilepsy, so why pump him full of debilitating drugs that make him feel like shit if we don’t have to? I say this knowing that not all children with epilepsy fit this profile and knowing full well that things with Calvin could suddenly and dramatically change, particularly with puberty on the horizon, causing us to reconsider this tack.

Thankfully, at least for now, the cannabis oil seems to be helping, a lot. It’s just too bad that there aren’t more neurologist and legislators out there willing to inform themselves of its benefits, to champion its use, advocate for its research and support its legalization at the federal level. I’d bet if their children had epilepsy, they would do it all in a heartbeat.

Calvin in a daze after his most recent seizure