reefer madness?

In my recent research of medical marijuana, I came across a report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy. The entire report was quite intriguing, but what gave me goosebumps was typed at the end of the last page:

Quality-of-life surveys show that the adverse effects of AEDs (antiepileptic drugs) have as much of an impact on the patient's ability to enjoy life as the seizures themselves [20]. Our survey reports suggest that cannabidiol-enriched cannabis is behaviorally well tolerated and may have beneficial effects on cognition and mood. Many parents reported that their children experienced better sleep, increased alertness, and better mood while taking cannabidiol-enriched cannabis. These beneficial side effects are rarely reported with pediatric use of other AEDs [21]. Additionally, many negative side effects commonly associated with AEDs, such as irritability, insomnia, and aggressive behavior were notably absent from the parent reports on cannabidiol-enriched cannabis. Because of the apparent efficacy of cannabidiol-enriched cannabis, 12 parents reported weaning their child from other AEDs, thereby further increasing the child's quality of life by removing the negative side effects associated with those other AEDs.

Although each seizure Calvin has sends me into a state of despair, it's his hyperactive behavior from the drugs he has to ingest that takes its toll on me emotionally, not to mention how it must make him feel. And, so, it is with great hope that I am pursuing this form of treatment for my son, though it is not without misgivings; although it is legal in the state of Maine and Calvin will have a prescription signed by his pediatrician and a letter of recommendation signed by his neurologist and I will have a license from the Department of Health and Human Services to give it to him, it is still illegal at the federal level. This means we cannot take Calvin out of the state once he starts taking it.

For this we can thank a number of factors, beginning with damaging, exploitative propaganda such as the 1936 film Reefer Madness, which portrayed marijuana users as sex-crazed, murderous, suicidal maniacs. The film was originally financed by a church group and thought to be backed by the DuPont corporation, which saw industrial hemp as a threat to its business interests in wood-pulp paper and synthetic fabrics. Marijuana was further vilified by the racist mogul William Randolf Hurst, whose vast timber and paper mill holdings were also believed to be threatened by hemp. And, marijuana was maligned by Harry Anslinger, the first commissioner of the Federal Bureau of Narcotics, a close friend of the DuPont family whose department's funding might have been cut during the depression if not for the lies he told about marijuana's dangers to society. Sadly, America's puritanical base, the war on drugs and the pharmaceutical industry have all likely helped to perpetuate marijuana's false reputation and have stymied decades of research into its benefits for conditions such as MS, migraine, epilepsy, cancer, Parkinson's disease, diabetes, Crohn's disease, arthritis and autism.

Thankfully, it would seem that people are beginning to see through the lies and false propaganda and are giving medical marijuana, at the very least, a chance at saving lives. Do what you can to help legalize medical marijuana at the federal level, even if it is simply by opening your mind. Kids like Calvin are counting on it.

If you cannot view this video click here to see it on You Tube.

failures

Many of life's failures are people who did not realize how close they were to success when they gave up.

―Thomas A. Edison

Thomas Edison

savannah's story

Written by Tracy Dixon Salazar, Savannah's mom

I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “Her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.

Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.

It has been devastating to watch what epilepsy has done to my child. With over 35,000 seizures in seventeen years, it has definitely left its mark. At twenty, Savannah is the developmental age of a five year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.

Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.

Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve chosen a career as a researcher.

During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.

Fifteen years later, I have a PhD in neurobiology and am an epilepsy researcher.

As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.

Update: About 18 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium-channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium-channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 18 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 15 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!

Savannah with her seizure-alert companion, Yukon

dear mr. zappa (with video)

Dear Mr. Zappa, Dweezil, if I may,

First of all, I loved your concert, just as I did the summer before last when I saw you play live for the first time. Regrettably, I don’t experience much live music in Maine, so to be sitting in row seven of the State Theater near center stage, watching and hearing you work your guitar, seeing Sheila jam and witnessing each musical genius up there with you was truly sublime, and proved a much-needed escape for me. Thanks for coming to Portland.

The main reason I am writing, however, is not to shower you with praise—though to be honest my face hurt from smiling so much during the three-plus hours that you and your amazing troupe performed—but to tell you that something you said stung me. It was the comment you made during the audience-selected stage show you conducted during Bepop Tango when you told the dancers something like, “You need to be a little more epileptic than that.” I’m pretty sure you meant no harm, so I’m not scolding as much as I am hoping to enlighten you. You see, my nine-year-old son, Calvin, suffers from medically refractory epilepsy, which means that despite taking loads of powerful mind-numbing antiepileptic drugs he still suffers regular seizures and has so since he was two. The seizures are not fun to watch, they are not weird, they are not humorous, they are not a spectacle, they are not to be made fun of. I wager if you saw your own child have a six-minute convulsive seizure, one in which he didn’t breath during the first several, turning blue as a result, you might not have chosen to instruct your dancers to be more “epileptic.” And since one in one-hundred Americans suffers from epilepsy—likely all of them medicated and more than a third lacking seizure freedom despite the medication—I imagine I wasn’t the only audience member bruised by what you said.

I know that your father lampooned most anyone—gay men, Catholic girls, Jewish girls, etc.—and that no one was immune. I get that. And though his legacy may not be why you chose to say what you did, I want to point out that people with epilepsy have, for thousands of years, been trying to free themselves, not only from the seizures themselves, but from the witch hunts, the stigma, the myths, misconceptions, institutionalization, forced sterilization, shame, discrimination, marginalization and mockery, none of which they deserve to endure on account of their disease, their disorder.

I want to leave you with this short video I made of just one of perhaps thousands of seizures Calvin has had in his short life. I have no doubt that the seizures and the drugs have robbed him of his true potential, whatever that might’ve been; it is likely lost.

Thank you for listening, Dweezil. I'll keep listening too.

Christy
Calvin’s mom

This video may be difficult for some to watch. If you cannot view it please click here to view it on You Tube.

breathe

“You ok?” my husband Michael wrote from Boston having read yesterday’s blog post. I said yes, that after a tired, frustrating, angry morning with an impossible child I enjoyed a walk through the woods and a rest in the sun with my friend, Lauren. She and I were going to top off the day with an early evening glass of wine but my gut told me I should return home to check on Calvin since we had just reduced his benzodiazepine due to increasingly manic behavior.

Lauren and I hugged goodbye and I got to making Calvin’s dinner while Barbara, his nurse, was upstairs giving him a bath. “Christy!” she shouted, and I ran upstairs knowing what to expect. She had Calvin cradled in her arms trying to get a foothold on the wet tile floor. “You got him?” I asked, his slack, slippery body making him difficult to carry. She confirmed, and we rushed him to the bed.

Calvin’s face was purplish with blotches of scarlet-flush and cyanotic blue. He felt warm. His hands were dusky right up to his wrists. For minutes he went without a breath. I kissed him on the neck, gave him raspberries there too, hoping to disrupt the frenzy of electric impulses marching through his brain. Barbara massaged his back. “Breathe, Calvin, breathe,” I pleaded, and at six minutes he whimpered and tried to suck his thumb.

Later, I called up Luke to say I wouldn’t be making it to their costume party. “You’re a good mom ... you sacrifice so much,” he said, and then, "It sucks." My voice wavering, I agreed, knowing that he felt my pain in the most intimate way possible, the way parents of kids like ours do. “I love you guys,” he ended, and I told him that I loved him too.

Next, I called Roger to say that I didn’t need him to escort me to the party in Michael’s absence because Calvin had just had a seizure. He told me that as soon as he finished feeding the kids he’d come over, make me a drink and stay for a while. He added that he and his wife can’t do much but offer thier friendship, though they do much more than that.

Today Calvin is fine, but he remains irritable and whiny. I read my friend Elizabeth’s blog saying that a strain of medical marijuana with high cannabidiol (CBD) is helping her daughter who usually suffers several seizures daily. She wrote that Sophie is smiling and making interesting sounds. I’m going to meditate on that, and on my wonderful circle of friends and, while I breathe deep and exhale, I'll think of that serene spot at the side of a still sea that I can see clearly through a stand of shivering trees.

exhausted

I'm simply exhausted beyond words today—besides my own harsh ones—so I think I'll just keep them to myself for now.

photo by Michael Kolster

friday faves - a single voice

It is a small thing—perhaps seemingly insignificant to someone who might think that a single voice doesn’t matter—the simple telling of a story. Well it does matter. A solitary voice with a compelling story or message, becomes two, becomes four, becomes eight and blossoms, exponentially, into a tapestry of resonant voices, a critical mass—a movement.

I’ve seen it happen. A mother of a child might be brought to tears by the challenges of her daughter, her son, and so she shares that story with friends. A father might read about an incidental moment in time that reminded him of his childhood, and so he passes the story on. A woman might linger on words that made her think of her father or mother—or perhaps reflect on being a parent—then goes on to share that story with siblings and friends. A parent, a student, a friend, an acquaintance, might be reminded of the simple joys and pleasures in life that they were taking for granted, and be moved to use their voice to share that message with loved ones. Or perhaps a harrowing story of a little boy suffering countless seizures makes someone realize how bad, prevalent and lethal epilepsy is, having never before been aware, and that person shares the story with everyone they know.

Your voice is a single voice, it’s true, but it can become a million strong, three million strong, three hundred million strong, if you simply share a story, pass on a message.

In the spirit of epilepsy awareness month, November, I’m asking a small favor. Next time you read a post on Calvin’s Story, if it moves you, makes you reflect or reminisce, laugh or cry, please share it with others. It’s a very worthy cause. Your voice, whether you know it or not, will be helping to find a cure for epilepsy, this devastatingly obscure disorder that afflicts and kills more people than breast cancer. Didn’t know that? There’s one good reason that Calvin and I need your voice. We need to find a cure. He can't do it by himself—needs a leg up—and you can give it to him, and to millions of others and their families.

So, take that one, simple step that you might have considered before now, which is to share Calvin's Story. Those who have done so already have sparked a critical mass for epilepsy awareness. Doing so means the world to me, because—like many of you might imagine—so does Calvin.

Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster