in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

dear friends: this is your chance

This is a special shout out to my childhood friends, high school classmates and college buddies, but also to all of the remarkable people I've had the privilege of knowing and loving and partying with: If you've donated before, please give again if you can. If you've never donated, this is your chance! Join us in spirit (I know you can't join us in person) by giving what you can when you can if you can.  CURE epilepsy at: www.calvinscure.com

a sorry state

Epilepsy affects 65 million people worldwide and about one in 100 Americans, over 500,000 of them being children.

One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime. 

Each year, as many as 50,000 Americans die from epilepsy and related causes, such as drowning and head injuries—more than die from breast cancer.

Over 200,000 Americans are diagnosed with epilepsy each year.

For seventy percent of those with epilepsy the cause is unknown. 

Over thirty percent of people with epilepsy do not have their seizures controlled using medication.  

People with epilepsy live their entire lives tethered to the terrible side effects of anti-convulsant pharmaceutical drugs.

It's a sorry state when something so pervasive and damaging as epilepsy gets so little attention. Please give to CURE epilepsy at http://www.calvinscure.com

tonic-clonic

Below is a video taken several years ago of Calvin having a tonic-clonic seizure. This one is similar to the seizure that Calvin had early Monday morning. It is hard to watch, but essential in inspiring understanding and compassion for people who have epilepsy. Epilepsy is a terribly misunderstood and grossly underfunded disorder which affects sixty-five million people world wide, many of them children. One in twenty-six Americans will be diagnosed with the disorder at some point in their lifetime. Every year, as many as fifty thousand Americans will die from epilepsy and related causes such as drowning.

This seizure's intensity was likely exacerbated by benzodiazepine withdrawal, a class of drug that Calvin has been on for several years. This is why I have become such a light sleeper. This is why I constantly search for new treatments. This is why I give my son cannabis oil which I make myself. This is why I write Calvin's Story, because Calvin's suffering is so senseless and, most regrettably, he can't speak for himself.

To donate to CURE epilepsy, click here.

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

help us CURE epilepsy

In honor of Calvin's tenth spin around the sun, and for the millions like him suffering from epilepsy, please give what you can to help CURE epilepsy now at: http://www.calvinscure.com

click to donate to CURE epilepsy

come out of the closet

Remember your child—or your sibling, niece or nephew—as an infant: pudgy legs, sweet smiles, bright eyes and soft hair smelling faintly of rosewater or beeswax. That was Calvin when he was eighteen months old, just before the first time we feared he might die.

He’d been sick with a fever that had spiked too quickly, triggering a four-minute grand mal seizure. Michael instinctively rocked Calvin's tiny body, which turned blue and convulsed, as time stood still. Since then it has happened again and again and again; no drug or dietary therapy has worked to stop them. At times, because of the drugs, Calvin has morphed into someone we’re not even sure we know. There was a time when we had to pinch his nose shut just to spoon medicine into his mouth, medicine that, even though it doesn’t completely work, if he doesn’t get he’ll likely have a prolonged, life-threatening seizure. We’ve given him powders and pills and liquids that have never been tested on—or approved for—children, medicines in which, as the drug literature reads, “The mechanism of action is unclear.”

My boy has never in his life taken a step without being under the influence of powerful, dizzying anticonvulsant drugs. He spoke his only word—Mama—once, just before the seizures began.

I recently sat at a table dining with several people who I’d never met before. The conversation drifted (or perhaps, like the fierce advocate I am, I steered it) to Calvin and to epilepsy. I explained some of the horrors of the disorder, of its stigma, its underestimation, its pervasiveness, it misunderstanding, its physical, emotional, financial and societal burdens. When I mentioned the difficulty of advocacy efforts—because few people admit publicly that they have epilepsy or are afraid to share that their children are afflicted—one of my dinner companions discreetly raised a solitary finger indicating to me both his struggle with the disorder and his reluctance to admit it to the rest of the group.

Sadly, I know a handful of people who are afraid to come out of the closet, and I can’t say that I don’t sympathize. Look at the heat that Minnesota football coach Jerry Kill got from the media when he suffered a seizure on the sidelines: journalists saying that fans shouldn’t have to risk witnessing a “middle-aged man writhing on the ground,” saying he should consider resigning, saying he should manage his condition better. But until at least the bravest of those with epilepsy face their fears, like Kill has, and come out, until they show the world what epilepsy is all about and until we as a society act compassionately toward people who suffer from the disorder, we’ll remain at this impasse. And as long as we continue to live in the dark ages of fear and ignorance, appropriate funding for research will not be assigned or raised, a cure will not be found, kids like my Calvin will continue to suffer the scourge of seizures and antiepileptic drugs, and parents like us will continue to worry that our children might die at the hands of this neglected disorder.

ignorance

Last Saturday my brother Scott, who is a senior associate athletic director at the University of Arizona, sent me an email with a link attached, telling of the seizure that Jerry Kill, head football coach at the University of Minnesota, had on the sidelines during that day's game. I immediately went to the link, skimmed the article and read some of the comments. This is what some of them said:

"Jerry, it is time to hang jock."
"All of us Viking fans have enough seizures watching them!!"
"He should retire before he dies on the sidelines."

To each of them I replied, “you and your ignorant comments suck. learn something useful,” and then I attached the link to my blog.

I went back to read the article more closely and learned that Minnesota’s athletics director, Norwood Teague, had said that he "hoped Kill would do a better job of managing his condition.”

The clueless remark made me as ill as the rude comments following the article. Would any of these statements have been made if a cancer victim had collapsed on the field? Doubtful.

It pains me how much epilepsy is misunderstood, stigmatized, made fun of, underestimated, and that some people hold the victim culpable for their behavior and management of their disorder. It's not that simple. If only everyone could be cured or, at the very least, have their seizures controlled by medication. But the sorry truth is that at least a third of individuals, like my nine-year-old son Calvin, continue to have seizures despite ingesting massive amounts of medication, all of which have heinous side effects and some of which include making seizures worse. Even some of those compelled to have brain surgery continue to have seizures and must remain on medication. It is estimated that, annually, 50,000 Americans die from epilepsy and related causes such as drowning and head injuries, which is more than die each year from breast cancer. And yet it remains a mere blip on the screen in terms of awareness, compassion and funding.

I want to jump through the computer, grab these ignoramuses by the scruff of their necks and shake the living daylights out of them, telling them of the injustices of epilepsy. I'd like to smack them down and wipe those glib smirks off of their lame-ass faces once and for all. Try living at my house for a week, I think, try walking in someone's shoes who has epilepsy or cares for a loved one who does. Then see how you feel.

Sadly, one in one hundred Americans have epilepsy, which means that most of us likely know at least a handful of people who suffer from the disorder; we just aren't aware of it. People with epilepsy often keep it hidden because of fear of discrimination, bullying, shaming and ostracization. That shouldn't be the case, and with many of its sufferers still in the closet, it makes advocacy that much harder.

Wake up America. One in twenty-six of you will get the diagnosis some day ... or your mother, your father, your sibling, your wife, your husband, your child. Epilepsy is a terrible, life-threatening disorder. Have some compassion y'all.

To donate to CURE epilepsy go to: http://www.calvinscure.com

Mark Vancleave, Minnesota Daily

disparity

According to the CDC, as many as three million Americans and their families suffer from epilepsy. One in twenty-six will be diagnosed with epilepsy at some point in their life. Chronic childhood epilepsy can result in severe developmental deficits due to uncontrolled seizures and drug side effects. More Americans—including our children—die every year from epilepsy than from breast cancer. These are just a few of epilepsy's heinous statistics.

Epilepsy affects three times the number of people that have Parkinson's disease (nearly all of whom are adults) yet annual NIH funding for epilepsy research does not reflect that discrepancy.

The disparity illustrated in the colored graphs below is indefensible, and is likely due to a variety of factors including epilepsy's long and recent stigma, its myths and misconceptions, its lack of a celebrity advocate, and its lack of general advocacy due to discrimination, marginalization and ridicule that epilepsy sufferers and their families fear.

Please help level the playing field in any way you can. Share this story and/or give to CURE epilepsy at: http://www.calvinscure.com

gone

In the seven years since Calvin was diagnosed with epilepsy I have corresponded with four parents whose children died in their teens from seizures, two who drowned as a result. Regrettably, some of those parents, it seems, did not understand the severity, risk and mortality rate of epilepsy, likely because their neurologist didn't broach the subject. Then, in a blink, their child is gone. One parent recently wrote to me anonymously:

My 16 year old son died Jan 9th from seizures. He was on life support for 5 days. I found him unconscious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him.

It is simply inexcusable for neurologists to avoid confronting the topics of SUDEP: Sudden Unexplained Death in Epilepsy, the fatal outcome of some prolonged seizures and the risks of fatal bodily injuries and drowning due to seizures. The failure to do so is partly to blame for society's ignorance of the devastating effects of this disorder and, thus, its lackluster funding for research.

The mortality rate of people with epilepsy is three times greater than that of the general population and the risk of accidental death is twenty-four times greater. If more parents knew this perhaps some of these deaths could be avoided. Grow some spines, neurologists, and buck up to the tough talk. You know who you are. What if he or she were your child? How would you feel?

Join us in our fight to cure epilepsy now. Go to http://www.calvinscure.com

One of many who have died, Kevin Andrew Mateczun, December 6, 1984 - August 8, 2001

epilepsy's scourge

Before I had Calvin I thought that epilepsy was a benign disorder where you take a pill and everything is okay. That myth couldn't be further from the truth.

Epilepsy is as prevalent as, and more lethal than, breast cancer, and tragically it often plagues children. Even so, and because of its long and recent history of fear, shame and stigma, it remains an obscure, underestimated, misunderstood, stigmatized and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts about one in one hundred Americans. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, and its incidence is on the rise. One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime.

The mortality rate of people with epilepsy is two to three times higher than the general population. The risk of accidental death is 24 times greater. Ten percent of people who die from epilepsy and related causes die from SUDEP: Sudden Unexplained Death in Epilepsy, which is not completely understood but is thought to occur as the result of cardiac arrest or suffocation during a prolonged nocturnal seizure. Our son Calvin is in one of the highest risk categories for succumbing to SUDEP.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government's funding and at least ten times the funding from private entities as compared with epilepsy. People with epilepsy, and parents of children with epilepsy, often hide their affliction for fear of discrimination, resulting in a colossal insufficiency of advocates.

In as many as 40% of cases, seizures are not fully controlled with medication. But even those who are fortunate to be seizure free on drugs still suffer heinous, often debilitating side effects from medications and must remain on those drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly—miserably—medications are no more than band-aids, which mask the symptoms but do nothing to solve the root cause while enducing consequences of their own.

Give what you can to CURE epilepsy now: http://www.calvinscure.com

photo by Michael Kolster

level the playing field

Disease                      NIH funding          Americans      Annual               
                                    2012                      afflicted           deaths
                                   (in millions)

Alzheimer's                  $498                      5.4 million         83,000

Epilepsy                       $153                      3 million            50,000

Breast Cancer              $712                      200K*               41,000
Parkinson's Disease     $151                     1 million            15,000
Multiple Sclerosis         $121                      400K                  2,400

Help level the playing field. Donate to CURE epilepsy now: http://www.calvinscure.com

Statistics from the Center for Disease Control and the National Institutes of Health.
*Annual new cases of invasive breast cancer, equal to the number of new epilepsy cases.

slash the 'stache (video)

This, in honor of David Axelrod's epic sacrifice in his effort to raise one million dollars—within one month—for CURE epilepsy research. They made their goal and his 'stache was slashed today on MSNBC's Morning Joe. As I watched a shining straight razor devour his forty-year-old lip rug I found myself curling my own upper lip down, I suppose in some act of solidarity.

In case David and Susan are mourning the loss of his moustache, I have included this humorous video. We can all learn something. There's still hope, David. Godspeed.

first steps (video)

It occurred to me this morning (strange that I don’t remember it having occurred to me before) that Calvin, who is eight and a half, has never taken independent steps without being under the influence of powerful, sedative, anticonvulsant drugs. His epilepsy diagnosis came two months after his second birthday at which time, because of his other neurological deficits, we were still holding his hands to help him along, not unlike most parents do with their infants.

I have a few videos of some of Calvin’s first steps in the summer after his second birthday. In them, he teeters and tips as if on a ship in the high seas. He catches and rights himself, but overcorrects and teeters to the opposite side. At that point in time he was taking more than his fair share of Leviteracetam (Keppra) aimed at thwarting his seizures, albeit unsuccessfully.

All anticonvulsant medications are sedatives, even the ones that provoke paradoxical hyperactivity and insomnia in some children. They all can cause dizziness and lack of coordination. Most cause lethargy, weakness, gait ataxia, visual disturbances and nausea. I could fill pages just listing the side effects from these drugs that the pharmaceutical industry makes billions selling.

It’s hard to say, but my gut tells me that Calvin would be walking independently if it were not for his years’ long, sustained and massive intake of these chemicals. He still might have trouble negotiating stairs and rough terrain due to his poor vision and muscle tone, but my best guess is that his balance would improve if he weren’t dizzy all of the time or perhaps experiencing vertigo, another side effect of some of the drugs. It makes me ill to think of the millions of the world's parents who must feed their tiny babies, toddlers and tykes unknown quantities of multiple anticonvulsant narcotics, barbiturates and benzodiazepines with few other viable choices beyond letting them seize uncontrollably until they might eventually expire.

I dream about stripping Calvin of all the drugs, detoxifying his fragile system, getting him back to the place where a little boy should be, out from under the wicked and iron thumb of pharmaceuticals. The only way possible, except for the highly unlikely chance of outgrowing his seizure disorder, is to find a cure. But to do that, we need a major leg up in terms of awareness, advocacy and funding: steps that Calvin will never be able to take on his own, but that I can.

Help bring us one step closer to a cure for epilepsy. It’s easy. Just do it one story at a time. Please share.
Give to cure epilepsy: http://www.calvinscure.com

join the ranks

Nearly one hundred ravenous guests dined on uber-fresh maki rolls, salmon lox and cream cheese, fresh cheesy pizza, amazing Mediterranean munchies, mini savory quiches and piles of the best chips, salsa and guacamole this side of the Mississippi before moving on to homemade chocolates, the worlds best carrot cake and the most sinfully delicious profiteroles you can imagine.

Yes, a good time was had by all at last night’s fourth annual cure epilepsy benefit. We were all treated to live music by two talented local bands alongside an open bar serving beer, wine and bubbly water. All of the aforementioned were donated—the food, the drink, the bartender’s and musicians’ time, the help from my friends setting up and breaking down the joint.

To top it off, Michael’s parents flew in from Florida and surprised us both yesterday afternoon. They had me in complete tears. A couple of friends even came up from New York. I said to Michael that it felt like a grange hall wedding, looking out over a gaggle of some of my most favorite people crowding the warm, wood-paneled barn. My father-in-law even wore his shiny red rubber clown nose, having not done so at a gathering since Michael and I were married.

With only a few days left in this year’s campaign we’ve raised close to our $15,000 goal. We did it with the kind and generous support from all those who attended the event and many other benevolent spirits from both near and far. My ambition is to exceed that goal and we can do it, but only with your help.

Join the ranks—the superheroes—and please give what you can to epilepsy research on behalf of Calvin’s eighth spin around the sun (no small accomplishment) and the fifty million people and their families who suffer from this lethal, stigmatized, neglected, trivialized and grossly under-funded disorder. http://www.calvinscure.com

Superheroes Martin Mackey, (me), Jen Baldwin and Maura Bannon

do the math

On this, the day of our 4th annual CURE epilepsy benefit, this is all I have to share. You do the math:

National Institute of Health Annual Funding 2010: 

Affliction:                  Funding $$    Annual deaths:

                                        (in millions):

HIV/AIDS                     $3,160                18,000

Breast Cancer               $778                   41,000

Alzheimer's Disease    $458                   75,000

Epilepsy                     $137                  50,000

Please help level the playing field and donate to critical epilepsy research at: http://www.calvinscure.com

photo by Michael Kolster

imagine and act

Butterflies are beginning to flitter around in my stomach, though I shouldn’t be nervous; I’ve thrown parties for over a hundred people before. I just hope everything comes off okay for guests at Saturday night’s benefit. I imagine it will.

My husband and I started throwing this party four years ago in honor of Calvin’s birthday. We invited friends into our home and served food right out of our kitchen, and the kitchens of a few close friends. In turn we raise funds, from guests and friends worldwide, toward a cure for epilepsy, the awful foe that has wreaked havoc on our lives, on Calvin’s little brain, and on fifty million people and their families.

Epilepsy has crushed us in a way I never could have imagined. The relentless seizures and mind-numbing drugs have brought us to our knees. We have few options. One is to sit by and watch our son suffer the effects. He’s just a little kid and epilepsy is a huge monster to battle with few resources to do so. The other option is to take action, to try and change the landscape of this trivialized, neglected, lethal disorder. I like to imagine obliterating it, blowing it the hell out of the water.

So we, the underdogs, are waging a war against this fiend that must be won. So far this year we have already raised $12,000 with the help of tens of generous donors and one substantial grant. Thank you! My goal is to raise between $15,000 and $20,000 during this year's campaign. Funding for epilepsy research is paltry at best because of its history of fear, stigma, shame and lack of a celebrity advocate. I aim to change that with your help.

So, dear readers—friends—I am asking you very personally; my family; my former swim teammates from Phantom Lake, Sammamish High, B.E.S.T, University of Washington and Central Washington University; my former teachers and coaches; my Sammamish High School classmates; my college alumni; my friends and neighbors from Coffin School and Bowdoin College, San Francisco, Seattle, Bellevue and Maine; please come off of the sidelines and give what you can to epilepsy research. Know that I am thinking of you and eagerly waiting to hear your voice of support.

Most of you cannot know how it is to have a child with epilepsy, but let me just ask you to imagine—and act.

Please donate now to epilepsy research at: http://www.calvinscure.com

photo by Michael Kolster

so not himself

When I went up to kiss Calvin goodnight on Sunday, after his third dose of a third antiepileptic drug that I buried—along with his others—into his yogurt at dinner, (one and a half of a round white pill, three salmon-colored oval pills and one half of this new baby-blue colored oval pill,) he didn’t smile. He almost always smiles, but not this time.

I gently lifted his head to give him a bottle of water, then stroked his face and told him I loved him. Since starting the new drug he’s been sleeping restlessly, and I’ve found him uncovered in the middle of the night, knees tucked up underneath his belly rubbing his head in his hands. Sometimes he whimpers.

It almost makes me ill—carves a nervous hollow pit into my stomach—to think about how these powerful drugs must make him feel. I wonder if he wonders why he feels so odd, so bad, so euphoric, so irritable, so dizzy, so weak, so headachey, so uncoordinated, so tired, so wired—so not himself. But then, what exactly is himself? I ask. Calvin has been on nine different courses of antiepileptic medications, sometimes as many as four at a time, since he was only two years old.

I worry these drugs are stealing away my Calvin, slowly turning him into a psycho right under my nose, but at such a rate it’s impossible to tell if it’s the drugs changing him or just the natural development of his personality. I can’t know. I’ll never know. Who might my son have been if not for these frigging seizures and mountains of chemical drugs? It’s just no life for a child, is it? Can you imagine if it was yours?

Please share Calvin’s Story with others. The only hope for a cure is to raise epilepsy awareness to an appropriate level that highlights its prevalence, its magnitude, its suffering and its costs. It’s as easy as pushing a button. You can do it, I know you can.

sobering SUDEP

Most people have never heard of SUDEP. It stands for sudden unexplained death in epilepsy. It’s real and it’s scary, particularly for people like us.

Although not enough is known about why SUDEP occurs, it seems clear that there are a number of contributing factors that would predispose one to the risk, almost all of which, most soberingly, apply to our little boy Calvin.

Calvin is at greater risk of succumbing to SUDEP because he has uncontrolled tonic-clonic (grand mal) seizures. His risk is ten times higher than the risk for those with epilepsy who have only one to two tonic-clonic seizures annually. Calvin has close to fifty each year and, in the past, has had more than double that. Additionally, Calvin takes a combined regimen of antiepileptic drugs (AEDs)—called polytherapy—which also raises his risk. Moreover, one of his drugs’ many side effects is respiratory suppression, a factor that itself increases the risk of SUDEP. Early onset of epilepsy (before the age of 16) is another contributing factor. Calvin started having seizures by the time he was two years old. Having seizures during sleep increases the SUDEP risk and, historically, most of Calvin’s seizures have been nocturnal. Lastly, males are identified to be more prone to SUDEP when compared with females.

The nature of Calvin's intractable epilepsy requires that Michael and I walk around wearing a baby monitor tied to a ribbon around our heads, like a headband, anytime Calvin is sleeping. This way we can hear every little sigh and hiccup—or tonic-clonic seizure—that he might have. Although Calvin’s room is attached to ours we’ve got that damn monitor on full blast hissing white noise all night long from the nightstand near my head. I wake often, at times more than once an hour, if I hear him make any unusual sounds or if I suspect a looming seizure. I creep to his cribside and shine the flashlight on his lips to ensure that they are pink. Nights when he sleeps soundly and mornings when he sleeps in late I fear most of all. I dread going to his bedside on quiet mornings afraid I’ll find him dead. I’ve known of parents who have lived this most wretched nightmare of all: waking to finding their child lifeless. Gone.

We could eradicate SUDEP if we could find a cure for epilepsy. The only way we are going to find a cure for epilepsy is if we increase society’s awareness of the disorder and expose it’s grave impact on the millions of families and individuals who suffer from it. We must unmask the obscure reality that epilepsy research is grossly underfunded, especially when compared with other neurological disorders that impact far fewer people and that don’t affect children.

Please offer a few seconds of your time to share Calvin’s story. Help bring us one step closer to a cure for epilepsy. It’s not hard, just do it one story at a time. It's as easy as pushing a button.

photo by Michael Kolster

wicked affliction

As I've said before, this damn epilepsy is a moving target, a runaway train, an elusive enemy, a slippery venomous snake. We’ve given Calvin eight different anticonvulsant drugs over the course of five years and none of them have eliminated his seizures. He’s had as many as two dozen and as few as one in any given month, but no better. If he has seizures at night we increase his evening dose of medicine and, like a bulging balloon squeezed tightly on one end, the seizures simply migrate into the daytime; increase the daytime meds and they billow back into the night. And those are just the seizures we know about.

Who knows if Calvin might be having all sorts of seizures that we don’t observe or recognize. Past electroencephalograms (EEGs) haven’t detected anything stealthy, but epilepsy is a progressive disorder that can morph and worsen over time which is why it’s hard to keep up with, much less get ahead of.

Seventy-five percent of research dollars goes into epilepsy treatments, namely drugs, leaving only a quarter of funding for finding a cure—there’s not much money in that. This means that the nearly forty percent of children and adults (over one million Americans) who have intractable epilepsy with few, if any, options for leading a seizure free life void of heinous drug side effects, developmental delays and at great risk of sudden death.

My goal in writing this blog is to increase epilepsy awareness so we can nail this sucker down and blow it off the face of the earth—this wicked affliction, this moving target.

 

 
DONATE HERE TO EPILEPSY RESEARCH

ominous storm

It’s been a long time since Calvin had seizures two days in a row, but until they are fully controlled, it’s bound to happen. Well, it just did.

The most common kind of seizure Calvin has now is tonic-clonic, or grand mal, a convulsive fit that involves the entire brain, halting his breathing for much of the two to three minute duration. Another kind that is more insidious is usually recognized only by me. On his pallid face develops a patchy flush, his body goes slack, his indigo eyes unresponsive and vacant. Yesterday he was dealt one of each. Today, even though we recently increased one of Calvin's drugs, the stealthy seizures—the ones that, if they didn't stop, used to land us in the emergency room—keep creeping over him like an ominous rolling storm.

In an attempt to arrest Calvin’s seizures we continue to inch up and up on antiepileptic drugs whose mechanism of action even pharmaceutical companies don’t fully comprehend. We only know that the drugs slow brain activity, which translates into slower development. With each dose increase Calvin’s balance, coordination and cognitive abilities slide. His development has nearly frozen since he was diagnosed with epilepsy five years ago. At seven years of age he’s still pretty much a big baby, and even then, many infants surpass his skill level.

At this point antiepileptic drugs are a necessary evil for Calvin. He’s not a surgical candidate, he’s too young for the vagus nerve stimulator—a kind of pacemaker for the brain—dietary therapy hasn’t worked, he hasn’t grown out of the seizures and, most importantly, we don’t have a cure. And considering the lack of public awareness and funding, we’re a long way from finding one.

Epilepsy is evil. It makes me angry. It ushers nausea. It makes me want to scream. It reduces me to tears. It's relentless. 

Please share Calvin’s story with others. Help bring us one step closer to a cure, one story at a time.

photo by Michael Kolster