life-radius

Lately I've been stir crazy, perhaps a case of cabin fever having spent most of this summer plus the last decade plodding along behind my son in a life-radius too small to serve most anyone well.

There was a time when both Calvin and I were relatively calm: me before becoming a mother, Calvin when he was a tot. Though for years he cried from colic, there were long stretches of time when he lay quietly next to us in bed, on the couch or on a blanket or towel spread out on the grass. On hot days, he'd recline in a baby bathtub outdoors, cross one foot over his other knee, fold his hands behind his head and just chill. He was tranquil. His body could stay still. And even though our life-radius was limited, there were placid moments within it.

All of that changed after he began taking the drugs meant to combat his seizures, including benzodiazepines, the first of which, Klonopin, was prescribed by Dr. Rx when Calvin was just three years old. The drugs took a toll on our boy. I lament having learned too late that the Klonopin was unnecessary—ostensibly prescribed as a bridge drug while he titrated up on Lamictal. Zonegran, which had been simultaneously prescribed at a therapeutic level, could and should have served the same purpose. Instead, one drug became three.

For years it appeared to me Calvin might be on the verge of walking by himself, but when he began the ketogenic diet at the age of four, what little balance, coordination and strength he had fell to pieces. Subsequent blood work revealed an increase in his antiepileptic drug levels; the diet must have been causing his body to metabolize the drugs differently. To improve his balance and muscle tone, we were counciled by Calvin's new neurologist to take him off of the Klonopin—the once-temporary bridge drug having remained in place for well over a year despite my previous pleas to discontinue it. Within days of initiating what I understand now was a swift elimination, Calvin's seizures doubled, and we were advised to add a fourth antiepileptic drug while he completed the benzo wean. Not knowing what we know now, we added another benzodiazepine, clobazam, aka Onfi. We were told it was thought to be less addictive and less of a muscle relaxant than the Klonopin, and that it might help ease his Klonopin withdrawal. It did, but because of habituation, which is a hallmark of benzodiazepines, Calvin eventually advanced to a very high dose of the addictive drug, and soon he was no longer capable of sitting still, sitting on our laps to read his favorite book, lying next to us in bed. His body became a mass of flailing nerves.

This past Februray, Calvin had his last dose of clobazam (insert secular amen here); the wean took us nearly four years. But his restlessness, though improved, for the most part has remained. He has a hard time sitting in a chair without being strapped in. He sits on our laps for mere seconds, minutes at best. He snaps and rubs his fingers incessantly. He doesn't attend to toys for more than a few moments. He paces around the house, constantly on the move from table to chair to jumper to shutters to stairs to couch to door and back again. I wonder if he will ever calm enough to learn to feed himself with a spoon.

But on a good note, it has been thirteen days since Calvin's last grand mal, nearly twice as long as his average span between convulsive fits of late. In that time we have witnessed only two partial complex seizures—one this morning—and he is, for the most part, sleeping very well. I'm tempted to owe the long span between grand mals to the new CBD oil from the good folks at Palmetto Harmony, but we need to give it more time before we can feel more certain. In the meantime I'll remain in my tiny life-radius, antsy and anxious to find an elixir that works to rid my boy of his fits, hoping for some newfound calm.

Michael and Calvin, July 2006 before his first apparent seizure, before the drugs.

pioneering women

Just before dawn as I slept in my boy’s embrace after an earlier grand mal, I dreamt of traffic jams, topless cars and failing brakes, of old flames neglecting my gaze and of girlfriends lost, of trolling icy bays of black and white and gray. The sky pressed down upon me, my loneliness naked and plain, and when I peered into an inky sea, an angry whale met my eye and set to fling me from my ship.

Perhaps this dream was a metaphor for life these past twelve years, especially since Calvin’s seizures first defined our world: their tendency to impede our every move, their habit to gather speed like runaway trains, epilepsy’s effect on our friendships, its nature to estrange, and the stress and dread of looming fits which shroud our every night and day.

Late last week I read a Facebook post from my friend Paige Figi, mother of young twin girls, Charlotte and Chase, the former famed for Charlotte’s Web, the cannabis oil that saved the seizure-ridden girl. Paige wrote:

Twins ... sigh. They share so much. Too much. Chase may have been named because she followed Charlotte out at birth, but she has absolutely been the leader, the caretaker, in charge. With her huge heart, she nurtured her sister through nine devastating years of seizures and all Dravet Syndrome brought to our lives.

Yesterday Chase had a seizure.

When I read her words I felt myself sinking into a murk, as if a huge stone were tethered to my feet. I pondered the unfortunate news.
 
What might this mean for Chase? Will she have more seizures or just the one? What would that mean for Charlotte? How will their family endure?

Then I thought of Paige. Some might call her Warrior, or Dragon Mom. I call her Pioneer. In Colorado several years ago, she was fighting to save her daughter's life from Dravet syndrome when, after Charlotte failed every available anticonvulsant drug and treatment, neurologists washed their hands and advised Paige to take her daughter home to die. Paige didn’t heed their call because she's fearless. Instead, she followed her gut, used her brains, checked her caution at the door and turned to cannabis, an herb that only one other American parent had openly given to his seizing child. Paige put herself on the front lines of using cannabis as medicine when the world was telling her, no.

Paige was instrumental in helping me blaze my own trail which, too, was on the cannabis-for-epilepsy frontier. She counseled me about benzodiazepine withdrawal (our children were on the same one), she directed me toward cannabis strains that might help fight my son's seizures at a time when few others were delving into the unknown. She has fought long and hard against a rigged system that maligns cannabis and would deny it as medicine for our kids, some of who are dying.

Shortly after my unsettling dream, I spoke with my friend Lauren and told her of Calvin's early morning grand mal, of how, in its aftermath, I'd given him a dose of CBD cannabis oil to see if it might stay a second seizure, and how it seemed to have done the job. I mentioned that I'd also given him his benzodiazepine two-and-a-half hours early followed by an extra Keppra upon waking for the day; All of these measures meant to derail any further seizures seemed successful at keeping them at bay.

Lauren praised my dogged efforts to eliminate as many of Calvin's seizures as I can. She told me she imagined me as the sharpshooter, Annie Oakley, conjuring up for me a western gal in leather boots and cowboy hat shredding her targets shot by shot. I remembered how I often describe epilepsy as a moving target, and so the image of a cowgirl in suede fringe, and seeing as how I'm a Westerner with a love of shit-kicking boots, seemed apt. I looked up Annie Oakley and found this description:

Her feats of marksmanship were truly incredible. At 30 paces she could split a playing card held edge-on, she hit dimes tossed into the air, she shot cigarettes from her husband's lips, and, a playing card being thrown into the air, she riddled it before it touched the ground.

And so, in honor of Paige, and all the other formidable mothers spearheading cannabis as medicine for their suffering children, I want to send the powerful mental image, and all the mojo that goes with it, of the Pioneer and her weapons: one syringe of cannabis oil at a time, blowing epilepsy to smithereens.

in defense of our children

I'm compelled to share this important story written by Health Impact News/MedicalKidnap.com Staff

Child Protective Services Threatens To Kidnap 7 Year Old in California When Parents Try to Transfer to Different Hospital

Kennedy May Willey after being transferred to UCSF in San Francisco.

Kennedy May Willey’s first seizure took place when she was nine months old, on December 26, 2008. It occurred 8 days after receiving her DTaP vaccination. The seizure lasted over 40 minutes and entailed a dramatic helicopter ride to the nearest major hospital in Texas which was over an hour away. Fortunately, little Kennedy rebounded and within a few hours the doctors wanted to send her home, saying that the seizure that had nearly killed her was a “normal febrile seizure.”

Her mother Dawn knew there was nothing “normal” about it and insisted that they keep Kennedy overnight for observation. A nurse told her she was paranoid, but within five minutes she was seizing again.

 

Dravet Syndrome Diagnosis

Eventually, two pediatricians, one allergist, one cardiologist and no less than six neurologists later, Kennedy was diagnosed with Dravet syndrome. This was not good news. For parent or child, Dravet can be a terrifying diagnosis.

The prognosis is anything but encouraging, the mortality rate is exceptionally high — 15-20% — with most dying suddenly while asleep, and seizures are severe, lifelong, and generally bring a host of developmental, behavioral and medical issues affecting every aspect of the child’s life.

Most children with Dravet are given anti-epileptic medications, even though Dravet does not tend to be responsive to medications. After reading story after story of children for whom medications made little to no difference, Kennedy’s mother, Dawn, felt there had to be a better way.

Through a series of fortunate events (apologies to Lemony Snicket), she was led back to her chiropractor and DAN! (Defeat Autism Now!) doctor who was eager to help, and the two struck up a collaborative relationship. Over time, they came to believe that Kennedy, like so many other medically complex children, had a “compromised gut” and if her gut were healed her health could be greatly improved. They started her on the Specific Carbohydrate Diet (SCD) and eventually transitioned to the Gut and Psychology Syndrome (GAPS) diet.

 

“Miraculous” Results through Diet

The results of her diet change approached the miraculous. Dawn estimates that Kennedy’s symptoms improved about 98%, with a huge reduction in frequency, duration, and intensity of her seizures. In addition, they no longer occurred randomly throughout the day, but typically occurred only when she was asleep. Children with Dravet’s are expected to regress from age two onwards due to the tremendous stress the seizures put on the developing nervous system.

Kennedy, however, has been beating the odds. She is now seven years old and generally lives a full “normal” life with her family in California. She attends a regular school, took surfing lessons in Costa Rica, plays tennis and the piano, and loves to swim and ride her bike.

Relapse: Seizures Increase

But life is always a little precarious with a severe chronic illness, and recently the Willey family came face to face with their worst nightmare. Last week Kennedy experienced an increase in seizures. The seizures began “clustering” requiring medical attention.

On Thursday, April 21, she was taken to her local hospital, but they decided she needed to transfer to a larger hospital: Children’s Hospital of California (CHOC) – Orange County. Dawn and her husband, Carl, were upset when they heard the news because they had heard numerous horror stories about the head of neurology at CHOC from other parents and doctors.

From minute one, they say their fears were confirmed. Dr. Mary Zupanc reportedly swept into the room announcing that she was the foremost expert on Dravet. She allegedly bad-mouthed the Willey’s Dravet doctors and refused to believe that, until a few days before, seven-year-old Kennedy had been running on the beach, leading a “normal” seven-year-old life. She allegedly told the Willeys that there were no “normal” un-medicated children with Dravet.

Of course, the Willeys have pictures and videos of their daughter to back up their claims, but they say Dr. Zupanc refused to look at them.

 

Drug Cocktails Begin and Conditions Worsen

Kennedy was already on two anti-epileptic drugs when Dr. Zupanc added Depakote, a drug that they say had been known to increase Kennedy’s seizures previously. She allegedly went into more cluster seizures and her tongue swelled up. The doctor ordered an EEG, which indicated no seizure activity, but her brain waves were slow.

The Willeys insisted that her “out of it” condition was attributable to the unfamiliar medications. Dr. Zupanc, reportedly not believing the parents’ testimony, insisted there must be some huge underlying problem, probably encephalitis. She allegedly pushed a CT scan and a spinal tap. Kennedy had to be put out for the spinal tap, adding more meds to the cocktail.

On Sunday morning, they allegedly administered more Depakote, which touched off more cluster seizures and a swollen tongue. Clearly evident to the parents, Kennedy was allergic to the medication.

The answer from Neurology? Even more Depakote.

Parents Threatened with CPS

That was when Dawn had had enough. She says she ran in and stepped in front of the nurse who was trying to do as the doctor had ordered. The next thing they knew a neurologist came into the room yelling about getting a court order if they continued interfering with Kennedy’s care. At 11 p.m. that night, a representative from Child Protection Services allegedly knocked on their door and interviewed the underslept, overstressed parents about their “medical neglect” until 1 a.m.

All the while, Kennedy allegedly had been given no food of any kind. Dawn had been begging for a feeding tube since the beginning to help Kennedy with metabolizing all the drugs, but Neurology had convinced them she was in danger of aspirating.

 

Zealous Doctors Want to Expand Treatment Beyond Dravet

Dr. Zupanc, arrived Monday morning accompanied by a large group of doctors and allegedly announced that there was something wrong with Kennedy other than Dravet, and she would be proceeding with in-depth testing, including another spinal tap and a brain MRI with contrast.

Kennedy was reportedly now having subclinical seizures — the second EEG showed eight 10-second seizures – she said, and that gave her grounds to increase the medications.

 

Parents Hire Attorneys in Attempt to Leave Hospital

After the CPS visit, the Willeys knew they had to get Kennedy away from CHOC and Dr. Zupanc. They formulated a plan to move her to UCSF in San Francisco and hired an independent medical advocate and two attorneys.

They weren’t sure if they were doing the right thing, though, until they met with the metabolic doctor who allegedly told them that Dr. Zupanc was conducting a ridiculous fishing expedition and that Kennedy’s body was too stressed for another spinal tap.

They realized that they were fighting for Kennedy’s life.

Carl asked the PICU pediatrician if he thought Kennedy was stable enough to be airlifted to another hospital and he said yes.

They expected to leave CHOC that afternoon, but at lunch time word came down that Dr. Zupanc had blocked the transfer saying Kennedy was unfit for travel.  Carl met with the pediatrician saying, “I beg you to save my daughter’s life and release her. You have the power to do this because you are in charge on my daughter’s floor.” The doctor’s response: “You have to remember that after you leave tonight, I’m still going to have to work with her and deal with this.”

Kennedy was transferred to UCSF in San Francisco.

Transferred to UCSF in San Francisco

After hours of battle, the doctor finally agreed to release Kennedy. The transfer would happen the next morning. However, delay after delay kept them at the hospital till mid-afternoon, and before they left, Kennedy was given a final high dose of medications, taking her to toxic levels.

Kennedy finally arrived in San Francisco on Wednesday (April 29th) and has reportedly been receiving excellent care since then. She is eating real food and smiling again.

 

CPS Threats Followed Them to San Francisco

One might think that this would mean the Willeys could breathe a sigh of relief, with their nightmare finally over.

Unfortunately, that does not seem to be the case. Last night (April 30th) Kennedy’s pediatrician at UCSF came to the Willeys and told them that CHOC had called CPS in San Francisco accusing the Willeys of “severe medical neglect,” saying that among other ridiculous charges they had “denied all meds.”

The representative from CPS in San Francisco interviewed the Willeys and agreed with everyone at UCSF that the Willeys were exceptional parents, CHOC’s complaint was “totally unfounded,” constituting blatant harassment, and the case would be closed.

 

Willeys Want to Warn Other Parents

The Willeys hope this may finally be the end of their nightmare, but they wonder about the next unsuspecting family?

Dr. Zupanc’s information at CHOC can be found here.

Also, the Willeys report that Dr. Maria E. Minon is the Vice President of Medical Affairs at CHOC, and her information can be found here.

The Willeys just want to have the freedom to choose their own medical care and treatment plan without being threatened by CPS because of over-zealous medical authorities who believe their treatments are the only ones available. They do not believe that doctors should try to coerce parents into accepting their methods and pharmaceutical products when other options are available.

pharma-head op-ed

This morning I read an op-ed in the New York Times, one written by Orrin Devinsky and Daniel Friedman, both physicians at the NYU Comprehensive Epilepsy Center. As I read the article I felt my blood begin to churn and boil. The men cast aspersions on the use of medical marijuana tinctures and oils for the treatment of childhood epilepsies. They condescendingly and dubiously noted that “anecdotes of miraculous responses to marijuana treatments in children with severe epilepsy are rife on Facebook.”

The men, who I wonder (though seriously doubt) if they have children with catastrophic epilepsy, go on to say how we need scientific studies to “bear out the hopes of these desperate families” because of the “evidence that marijuana use can increase the risk of serious psychiatric disorders and long-term cognitive problems.”

Um, Hello! No doubt these same docs have regularly—and for years—been prescribing Valium, Phenobarbitol, Dilantin, Keppra, Depakote, Topomax, Clobazam and Felbatol for little children, all of which can cause some combination of psychiatric and behavioral changes, cognitive delays, even suicidal ideation, plus heinous physical side effects attacking the central nervous system, gastrointestinal tract, metabolic system, circulatory system, vision, skin and subcutaneous tissue, musculoskeletal system and respiratory system including lethal side effects such as Stevens-Johnson syndrome, liver and kidney failure and aplastic anemia. C’mon! Where is their sense of perspective? Did they forget their promise to first, do no harm?

As I continued reading, I steamed in my seat. I wondered if these MDs are getting major kickbacks from the pharmaceutical companies whose drugs they are trialing, such as Epidiolex, a new drug derived by isolating one of the cannabis plant’s compounds, cannabidiol. It wouldn’t be the first time a physician pocketed dirty money from a pharmaceutical company for pushing one of its drugs.

The men went on to mention the importance of studying the placebo response and how it is powerful in children. Dudes, meet my kid, Calvin, who can’t talk and who has extremely limited receptive capabilities. He is oblivious to the fact that the pills we give him morning, noon and night are powerful, yet largely ineffective, drugs meant to stop his seizures. What about the children whose seizures are so bad that they’ve lost the ability to eat, sit up, walk, talk—even think—and who’ve been resuscitated multiple times by their mothers? Study the placebo effect? I don’t think so, at least not for many of our kids with the most severe forms of epilepsy.

Devinsky and Friedman end their opinion by saying that, “For the long-term health of Charlotte and other patients like her, we urgently need valid data.” Did they stop to consider that kids like Charlotte, who tried and failed every pharmaceutical available, were dying before they started taking medical marijuana? How many of their patients who have gone into a coma, suffered brain damage or died as the result of a prolonged seizure while waiting for a new drug to be approved could have benefited from the use of a medical marijuana tincture? How many more children have to suffer and die because of the fear, ignorance and inaccessibility of an herbal remedy that has been in use for thousands of years?

I finished the article completely repulsed. Even in their wish to foster the study of cannabis, Devinsky and Friedman fell short of advocating for the removal of cannabis in its entirety from the list of schedule 1 drugs, instead expressing their interest only in “compounds derived from marijuana,” to be removed. How convenient.

My friend Elizabeth, whose nineteen-year-old daughter is successfully using cannabis oil to treat chronic epilepsy—when nothing else has worked—also wrote about the article in her blog. She noted how she was put off by the accompanying illustration of a bottle of “Cure All Miracle Elixir,” complete with cannabis leaf label and suspicious fumes drifting out of its spout. Sensational. Thanks a lot, Times editors.

I’d like to challenge these healers to do some more homework, open their minds instead of covering their asses, grow some cojones and actively advocate on a patient's behalf whose pharmaceuticals just aren't working. There is great significance in the reports of efficacy using medicinal cannabis to treat a multitude of conditions including pediatric epilepsy. There is plenty of scientific evidence as to its efficacy, and of its benefit over pharmaceutical options. Just look to Israel's thirty-plus years of research. I'll continue to do mine. This is what I have learned thus far:

The therapeutic compounds in cannabis are believed to act synergistically; medicinal cannabis is not a one-size-fits-all solution. What works for one person might not necessarily work for another. There are hundreds of different strains that can benefit a variety of conditions, and access to these strains is paramount.

There are no recorded deaths from overdose of cannabis, while there are tens of thousands of deaths annually from the use of prescription drugs.

Our children, and others who suffer from chronic conditions, need effective treatments immediately. It can take years—even decades—for the pharmaceutical industry to research, develop, test, FDA approve and market new drugs.

Pharmaceutical drugs always come with an extensive list of side effects, all of which are undesirable, some of which can be debilitating while others can prove lethal. Some of these side effects, such as anxiety, depression or nervous tics, are often treated with additional pharmaceuticals, and so on, in a vicious, downward spiral. Medicinal cannabis, on the other hand, particularly tinctures and oils that have been designed to be non-psychoactive, can have few mild side effects such as dry mouth and somnolence. In fact, parents who treat their children with whole-plant tinctures not only report improvement in their child’s condition but notice many positive side effects such as improved focus, attention, coordination, development, cognition, gastrointestinal health, behavior, appetite, sleep and exhibit an overall improved quality of life.

As with vitamins and minerals, our bodies absorb nutrients more completely when taken in the form of whole foods as opposed to ingesting manufactured supplements that require inactive ingredients such as binders. The same might be true of cannabis. Additionally, the costs of pharmaceuticals are often prohibitive for those who have no access to health insurance.

Cannabis is an annual, deciduous, flowering herb. Patients should be allowed to use and grow this herbal therapy rather than relying on expensive, pharmaceutical drugs derived from the plant.

I invite doctors Devinsky and Friedman to join us in our home, to witness first-hand Calvin’s five-minute seizures, his respiratory suppression, his response to his medications, his visible side effects, his developmental stagnancy. I'd like them to see the large cardboard box full of empty and half-empty medicine bottles, vials, blister-packs and syringes that have housed tens of thousands of ineffective, harmful drugs that have sent Calvin sky-high and pressed him zombie-low, that have rendered him incapable of performing the same skills he had when he was two, that have caused addiction and withdrawal seizures, worsening seizures and damage to his quality of life and to ours.

Please come and visit, Doctors. Our door is open if you dare. Perhaps you’ll have a change of heart and mind and see the need for weed.

Note to readers: I will not publish any ads, promotions or testimonials to the comments section of this blog for any cannabis or hemp products or oils, so don't bother trying.

Ancient cannabis drawing

rally cry

It continues to be a huge undertaking, this pioneering of the right type of medical marijuana for Calvin and for kids like him who suffer from intractable epilepsy and live in Maine.

Nine months ago I knew little to nothing about this topic. Now I understand that we must procure and grow the right strains of cannabis high in cannabidiol (CBD) and low in tetrahydrocannabinol (THC) so as to avoid the psychoactive qualities in resulting tinctures. I've discovered that high CBD strains are not the only strains that have proven effective for treating medically refractory epilepsy, but that a tincture of THCa, in its acidic, non-psychoactive form, can also help. I have learned things about pest control and soils and fertilizers and growing conditions and clones and decarboxylation and liquid chromatography and tincturing. I've come to understand that it is illegal to transport plants, seeds, clones or tinctures across state lines. I've grieved the death of a handful of children with Dravet syndrome who died from prolonged seizures before they had a chance to get medical marijuana. I've heard that over 100 families have uprooted themselves and moved to Colorado to obtain the kind of medicinal cannabis, yet unavailable in Maine, that will likely lessen or stop their children's seizures, improve their overall well-being, even save their lives. I've read about the corrupt history of marijuana prohibition and have witnessed, first hand, the ignorance of some who would blindly prevent our children from obtaining what might be the only kind of medicine that can help them thrive.

We are so close to getting medical marijuana for Calvin that I can practically taste it. I have been given the recipes, our chosen dispensary has the appropriate strains growing, I'm holding my medical marijuana caregiver card and Calvin has his patient card. I am reading and writing and raring to go.

But just yesterday, I learned of a bill recently introduced to the Maine legislature that will prohibit the sale, use and possession of kief, the resinous substance extracted from the cannabis flower which is used to create various highly therapeutic tinctures that can be precisely measured, titrated and administered to our children without psychoactive side effects.

Calvin, who is now suffering weekly seizures and who has pretty much hit the ceiling with regard to the doses and side effects of his two antiepileptic pharmaceutical drugs, will likely benefit in myriad ways from tinctures of medicinal cannabis, medical marijuana. Calvin cannot smoke marijuana, nor would I want him to. Besides, heating the bud by smoking or cooking it is what renders it psychoactive, in effect turning non-psychoactive THCa into psychoactive THC. Ingesting it in its raw form would not allow for the consistency and minute titration that epilepsy patients require. The only option for Calvin, and for kids like him, is to put it into a tincture that is made with kief.

So, my new battle is to ensure that this bill does not pass, or if it does, the language concerning the banning of kief gets eliminated. I'm contacting our state representatives (you can too) and the folks at our Department of Health and Human Services, who are likely ignorant about the bill's restrictive and harmful impact on our sick children. I'll also be meeting with Senator Angus King (Independent, ME) on January 31st to see if we can rally his support on important federal legislation regarding medical marijuana.

Readers, this is a rally cry. What can you do?

http://www.mainelegislature.org/legis/bills/bills_126th/billtexts/HP124501.asp

friday faves - clover (video)

From last May.

While surfing Facebook last Friday I came across two photos, one of a purple clover, the other of a beautiful little girl with the inscription, "In loving memory, Clover Dohman 6/23/09 - 5/23/13." Knowing that purple is the color for epilepsy awareness I Googled Clover's name and found this video, which reminded me some of the first year or so after Calvin's diagnosis, and is a testament to the often overlooked fact that epilepsy is menacing and can often be lethal.

My heart goes out to Clover's family and to all children and their families who suffer the scourge of catastrophic epilepsies such as Dravet syndrome. Do what you can to raise awareness and funds for a cure and advocate for the use of medical marijuana, one of the few treatments that can help save these children.

fear, dread and loathing

My son’s epilepsy has changed me, made me worrisome and fearful. In many ways it has shrunken me like a wool sweater in boiling water, shriveled my nerves into a tangled, crumpled mass of fibers. I sense that fear and dread in my posture, feel my shoulders cinch up around my neck as if I were pressing into a gale-force wind. I feel my nerves bunch and knot around my bones. There’s a constant low drone in my head, my blood, like the nearly imperceptible but real buzz of a solitary bulb glaring in its socket.

I don’t remember being afraid much as a child, only at night on lonely walks down our unlit gravel lane headed home from Monica’s house. Fear quickened my steps and, as adrenaline fed fear, I’d launch into a full-out sprint round the bend in my driveway as if demons were swiping at my heels.

But I wasn’t afraid of scary movies, Hell or the end of the world. I wasn't afraid to sing solo in front of the entire school, wasn’t afraid to talk to strangers, go to the dentist, catch snakes and frogs, break up with boys, jump off of cliffs, swim past the breakers, sneak out of the house, drive ninety miles an hour, admit fault, endure pain, drop out of college, cold call, tell the truth, ask for help, backpack alone, explore foreign countries, converse with people whose language I didn’t speak, talk to the homeless, reveal my weaknesses, trust strangers, challenge authority, quit jobs, face adversity, eat food I didn't recognize, go to parties alone, move to new places or make new friends. I wasn’t afraid of any of it.

But epilepsy scares me. I’m in constant dread of my son’s next loathsome seizure, looking over my shoulder as if half expecting a lurking thug to whack me over the head. I jump at loud noises, cringe at Calvin’s odd behavior, flounder in angst and thrash in the obscure waters of antiepileptic drugs and their side effects that render my son a zombie-lunatic much of the time.

Because of epilepsy I never truly relax, and the fear, dread and loathing has, in some ways, become etched into my being, perhaps changed me forever. Though regrettable, I imagine this kind of fear and dread to be no less than a thousand-fold for the parents and families of the Sandy Hook Elementary School victims or for the parents of kids with catastrophic epilepsies such as Dravet syndrome. And so I make my best effort to put things into perspective and to understand that my former state of total calm is little to have given up, at least for now; I still have my child and my child still has me, and for that I am eternally grateful, even if it's sometimes scary.

Originally published last December.

photo by Michael Kolster

marijuana and the ailing child

Written by my friend Mary Pols and published in today's Maine Sunday Telegram

On a dark night in November, Meagan Patrick drove from her home in Acton with her husband, Ken, and their two children to a medicinal marijuana dispensary in Portland. Ken parked and went in, while Meagan and the kids waited in the car. “It was literally in a back alley,” said Meagan, a 31-year-old third-grade teacher.

Just a few months ago, this errand – shopping for medicinal marijuana to treat her baby daughter’s epilepsy – would have been unfathomable.

Ken came out empty-handed. There was plenty of medicinal marijuana available but, as they had suspected, not the kind they were seeking.

So this Monday, Meagan plans to board a flight to Colorado with 13-month-old Addelyn – “Addy” – to begin the process of becoming a resident there, far from family, far from Ken’s job and their woodsy home in southwestern Maine but close to what she believes may be her best hope for her child’s future.

About 100 families nationwide have already relocated to Colorado in order to obtain a strain of medical marijuana known as “Charlotte’s Web” that has been shown to be effective in treating children with epilepsy. Originally called “Hippie’s Disappointment” by its growers because of what it lacked in traditional potency, namely the THC (tetrahydrocannabinol) that gives users a psychoactive high, this strain of high CBD (cannabidiol) marijuana was renamed for a little girl named Charlotte Figi. Researchers at the University of Reading in England found evidence that cannabidiol, one of many components in the marijuana plant, can radically reduce the number of seizures in epilepsy patients; it reacts with receptors within the body and works as an anticonvulsant. That was borne out by Charlotte Figi’s case; at age 4 she was having 300 grand mal seizures a week and had run out of pharmaceutical options. In her first week on this cannabis-derived medicine she had just one seizure. Now 6, she is 99 percent seizure-free.

In Maine, medical marijuana is legal, even for minors, provided they pass a certification process with the Department of Health and Human Services’ licensing board. But the nearly two dozen Maine families who want to try it have run into numerous roadblocks.

The first is supply. Charlotte’s Web, developed by Colorado grower Josh Stanley and his five brothers – widely referred to as the Stanley brothers – is not technically available in Maine, as the Patricks found. But Charlotte’s Web rumors fly through this network of parents, many of whom originally connected on a private Facebook group called Maine Epilepsy Parents United.

Some say there’s something just like it, or close enough, or that a Maine grower might be secretly working from a clone of the Stanleys’ plants. Others whisper that someone in California might be willing to mail another high CBD-strain to Maine. Or that maybe the high-CBD strain isn’t needed at all, that maybe the plant in its raw form could yield a medicine just as helpful. In this world where mothers ruefully count up the number of pharmaceutical options that haven’t worked on their kids and dread the possible side effects of whatever comes next, nothing seems certain but the desire to give a natural product a try.

The second major obstacle is legality. It’s not as simple as going to Colorado to pick up some clones of the Stanleys’ plants and bring them back to grow in Maine.

Under federal law, marijuana is still illegal and classified as a Schedule 1 drug without any known medical benefits and with potential for addiction and abuse; it’s in the same category as heroin and LSD. Anyone who imports it across state lines risks being charged with drug trafficking.

Even if a Maine family can obtain something similar – growers in Maine are working on high-CBD, low-THC strains right now – many of these children regularly cross state lines for doctor’s appointments at Boston Children’s Hospital or Massachusetts General. Their medicine has to go with them. As Joan Smyrski of Maine’s Division of Licensing and Regulatory Services for medicinal marijuana points out, that’s a lawbreaker.

“It’s drug trafficking,” she said. Read More ...

photo by John Ewing/Staff Photographer

a little weed

Having not had much of a history with it, in the year leading up to my father’s death during his prolonged battle with cancer, I smoked a little weed nearly every night. It relaxed me, lifted the load a bit. At times it helped my mind wander to more pleasant thoughts, while at others it allowed me to sink into my grief: something I found essential to coping with the gradual loss of him. He’d been fighting the disease for years, chasing it with regular bouts of chemotherapy which wasted him away by the pound until he was little more than a six-foot-four rack of bones. Near the end, to help alleviate his pain, he was high—or should I say low—on morphine much of the time. I barely recognized him, his eyes like black saucers staring into oblivion, his skin bland and puffy, his countenance flat. I'd recommended to my mother that dad try eating some weed to help relieve his pain and nausea and, surprisingly, she'd considered it, though he died before we had a chance to try.

When I smoked pot I never felt dizzy or headachy or nauseous. I had no trouble with coordination or balance, no double-vision, no vertigo, no tingling, no pain, no weakness, shortness of breath or loss of appetite. I wasn’t aggressive or agitated or irritable or anxious. I was simply relaxed and perhaps, at times, a little sleepy. And when I stopped smoking it after my father died, I suffered zero withdrawal.

Since eliminating one of Calvin’s three antiepileptic medications, rufinamide (Banzel)—one that didn’t appear to be effective and was causing him extreme hyperactivity—he’s had an increase in seizures to the point of occurring nearly every week. A relatively new drug, rufinamide was studied on a small group of children with Lennox Gasteau Syndrome (LGS) so its addictive nature remains unclear. But after its elimination, when Calvin suffered his first nighttime seizures in years—back to back—I panicked and increased one of his other two meds hoping to keep the seizures at bay. So far we’ve seen no benefit, rather a child who is bouncing off of the walls seemingly due to the increase in benzodiazepine (clobazam).

If the seizures don’t abate, we have three choices. We can do nothing and hope they don’t worsen, which is unlikely since epilepsy is a progressive disorder. We can add a third drug back into Calvin's regimen, which will most assuredly cause him to suffer some combination of worsening headaches, dizziness, gait ataxia, double vision, blurred vision, fatigue, vertigo, tremor, somnolence, aggression, agitation, hallucination, insomnia, psychotic disorder and pruritus, to name a few. Or, we can make good in our quest to find the right strain of medical marijuana for our little lamb, one that has a high cannabidiol (CBD) content and a low tetrahydrocannabinol (THC) content so that he won't get high. But if we choose that route, because of federal law we'll find ourselves trapped within the borders of the state of Maine living in fear of any future diehard administration that might sweep in and outlaw its use. If any tincture of this plant were to reduce or control Calvin’s seizures to the extent we could lessen or eliminate his pharmaceuticals—like it did for Charlotte Figi—if it were taken away Calvin could suffer a prolonged and lethal seizure.

So, we remain boxed in by seizures, shackled by pharmaceuticals and crippled by priggish, deceptive, propagandized laws about medical marijuana—a plant known to save the lives of children who have catastrophic epilepsies and shows evidence in helping conditions such as autism, arthritis, cancer, Alzheimer's, Parkinson's, MS, migraine and diabetes. So you can see why I'm determined to help change this harsh landscape which is epilepsy. All it might take is a little weed.

Dr. Sanjay Gupta joins Josh Stanley at the Realm of Caring in Colorado

save a life (video)

Watch this video to the end and you just might be able to save a life. You'll have the knowledge to educate others about the remarkable effects of medical marijuana for chronic conditions such as medically refractory epilepsy. With this knowledge, you'll be able to help move us out of the dark ages of fear and false propaganda to an age of enlightenment where a mere plant can do what pharmaceuticals cannot, and without the heinous side effects.

Please share this with others. It's truly a matter of life or death for some children with catastrophic epilepsy and perhaps for people battling cancer, Alzheimer's, Parkinson's, PTSD, migraine, depression, arthritis, heart disease, ALS, MS and diabetes.

Thank you Josh Stanley, your brothers and the Realm of Caring for all that you do. Please come to Maine soon.

If you cannot view the video below, you can watch it on You Tube here.

baby moon

Considering epilepsy has been known and written about for over two thousand years, it is incomprehensible to me that there has been so little progress toward better treatments and a cure.

Recently, I saw this post on Facebook about a baby girl named Moon. It weighed heavily on my heart while also inciting anger and frustration at the status quo of epilepsy research funding and awareness:

My family is in a very difficult situation right now. My daughter had more than 2 hours [seizure] last Sunday night and doctors had a hard time controlling it. Right now, my daughter hasn't woke up yet and it is already Thursday in our timezone (GMT +8.) 

Doctors are saying that my daughter is in a very critical stage and is going for a 50-50 chance. She has a swollen brain already and that's what they're trying to control and after 48 hours, they'll try to taper down the sedatives given to her and see if my daughter will respond and wake up. I keep telling myself that I should be ready that she might leave us soon but no matter how hard I try, i feel the pain and its something I can't accept yet. She is only 19 months old, suffering from Dravet Syndrome.

Mortality rate is high, I don't know if she can recover this.

Dravet syndrome is one of the catastrophic epilepsies of childhood. It is rare, appears as if out of the blue, is resistant to medication and wreaks havoc in the brains of children. Those diagnosed with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and suffer associated conditions such as behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, disruptions of the autonomic nervous system.

Baby Moon has been in a coma for three weeks.

baby Moon

clover (video)

While surfing Facebook last Friday I came across two photos, one of a purple clover, the other of a beautiful little girl with the inscription, "In loving memory, Clover Dohman 6/23/09 - 5/23/13." Knowing that purple is the color for epilepsy awareness I Googled Clover's name and found this video, which reminded me some of the first year or so after Calvin's diagnosis, and is a testament to the often overlooked fact that epilepsy is menacing and can often be lethal.

My heart goes out to Clover's family and to all children and their families who suffer the scourge of catastrophic epilepsies. Do what you can to raise awareness and funds for a cure.