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

everything's going to be okay

The following is an excerpt from a work in progress, which describes an event from when Calvin was two:

Michael and I leaned over our seizing boy offering soothing words of encouragement.

“C’mon Calvin, you can do it ... everything’s going to be okay.”
 
But after twenty-five minutes of seizing, all I could think about was the brain damage that had begun to occur and how my only child’s vital organs—his heart, his lungs, his brain—might soon begin to fail. At that point a pediatrician entered the scene and, after I gave her a quick summary of the day’s events, she sat down to do her best to thread the butterfly needle into my son’s tiny body, which was rife with spasms. She appeared to be meeting as much trouble as the nurses had in finding a vein. In my angst, time expanded, then froze, the air in the room growing stale. Finally, her needle punctured a vessel and a bolus of fosphenytoin bled into Calvin’s vein. I wondered if it burned or, if Calvin’s seizing brain didn’t feel it, if his body might have some painful awareness of the foreign liquor commingling with his blood. I put my hand to his forehead, which felt warm and clammy, and I waited, with much fear and hope, for something to change.
 
Still, the seizure raged for another twenty minutes in the cool, sterile room. Everything had seemed to take on the jaundice of the beige curtains and floor, lacking all natural color, like my child’s oxygen-deprived skin. It seemed clear that the emergency medications had failed my boy. His delicate fingers, toes and lips were tinted blue-gray, his skin pallid, his body pumping in rhythmic bursts. In my research of epilepsy I had read that the longer a seizure lasts the harder it is to stop, like a runaway train speeding downhill without brakes, only to derail and smash into a billion shards. It seemed we had no choice but to see our boy crumble and fade away right before our eyes. The only solace was in hoping he was unaware of what was happening to him, though we couldn’t be sure. In my mind I thought, he’s going to die now, and I knew Michael was thinking the same. Trying to blot out the presence of strangers who made no further attempts to save our boy, we wrapped our arms around him and whispered.
 
“Everything’s going to be okay, Calvin, you’re doing such a good job ... Mama and Daddy love you. We love you so much.”
 
We stroked his arms and legs, brushed wispy blond locks back from his face. I began kissing him in the nape of his neck. You love it when I do this, don’t you, and I realized it might be the last time I’d press my lips into his warm flesh.

Photo by Michael Kolster

june blues

If it weren't for the pink, purple, white, red and yellow flowers in my June garden I'd be blue, blue, blue.

At eight o'clock on Friday night Calvin had the first of three, intense grand mal seizures within a span of twelve hours. I'd been out enjoying my usual evening stroll in the garden when I heard a rhythmic rustling over the baby monitor that was slung around my head. Seconds later, I heard my boy's quickened panting.

"Michael!" I yelled, "He's having a seizure!"

I ran as fast as I could, kicked off my rubber boots in the mudroom, grabbed a pre-made syringe of homemade THC cannabis rescue oil from the refrigerator door and scrambled upstairs. Michael had already unlatched the safety netting and side panel of Calvin's bed, so I slipped in next to our son, held his head and squirted the oil under his tongue. Within about twenty seconds, the violent convulsions stopped and, soon after, Calvin was fast asleep. He slept unusually calmly until four-thirty when I felt his body stiffen, then begin to spasm again. I repeated the THC measure (I'd brought a second syringe up in anticipation of a another fit) and again it seemed to shorten the seizure. Regrettably, thought, it did not thwart the third seizure four hours later, so I resorted to giving Calvin the rectal Valium, which his addicted body seemed to need because of his incremental benzodiazepine withdrawal.

Saturday, Calvin was listless, wobbly, congested, and had a low-grade fever. Recently, there had been one case of pertussis reported at his school, so we took him to the doctor to test for it. Calvin has a decreased threshold for pneumonia and bronchitis likely due to his neurologically-based low muscle tone, so we try to nip early evidence of possible bacterial infections in the bud. He's on an antibiotic and seems to be doing better, or so we think.

These recent clusters of seizures cause me to rethink my protocol. Next time Calvin suffers a seizure early in the night I'll give the THC to stop it, followed by a preventative dose of THCA, perhaps with some CBD, at midnight. Then, if he still has a second seizure, I'll give him the rectal Valium rather than waiting for a third to occur.

Though Calvin had three seizures, all more convulsive than usual, they were markedly shorter, and we were able to avoid the hospital where he is inevitably exposed to more germs, needles, leads, splints, bandanges and stress. In fact, since we began giving Calvin the rescue THC oil a few months ago, we've skirted the hospital all together, even in the face of three bouts of status epilepticus.

Today, it's raining outside and my boy is back in school. Besides the seizures, he's been pretty happy lately, sleeping way better and is much, much calmer for the most part. My guess is that the slight reduction in his Keppra a while back and the elimination of about 80% of his benzodiazepine over the course of the last fourteen months have improved his quality of life. He's drooling less, walking better and is more placid when being held.

Even so, Calvin's relentless seizures, drugs and side effects regularly make me blue. But if I just look outside at the bounty of color, texture and lush fragrance that is my garden—a garden younger than Calvin—I realize that with some hard work, patience and resolve, next year it will be even better and I think, maybe Calvin will be too.

Calvin in his nurse, Beth's, arms on Saturday

the trouble with keppra

Nary a moment goes by when I'm not preoccupied with Calvin's well-being, behavior, seizure control, antiepileptic drugs and their side effects. After Calvin's February visit to the emergency room because of status epilepticus (serious, sometimes lethal, uncontrolled seizures) I spoke with his neurologist and pediatrician. Both of them, who I very much respect, thought it might make sense to increase Calvin's Keppra to account for his recent weight gain, thereby eliminating one variability in his regimen making it easier to analyze the effect of changes to his clobazam and/or cannabis oils. Unfortunately, I was panicked, and too quick to agree before giving it more thorough consideration. As soon as I added another 125 mgs of Keppra to Calvin's nighttime meds—his Keppra dose already well above the standard pediatric therapeutic level and therefore possibly toxic in some ways—I realized I had nevertheless introduced another variable, perhaps more consequential than what gradual weight gain had done to his dose over time.

Soon after the increase, Calvin's behavior deteriorated. He had been much calmer for the most part since reducing his clobazam and since gradually increasing his cannabis oils. He began flailing on the changing table again, woke nearly every morning irritable, was frequently agitated and fell into hysterics more often, sometimes on a dime. Since then, Calvin has suffered two more bouts of status epilepticus despite the increase in Keppra. So I've been considering dropping his dose back down while temporarily pausing the clobazam reduction and any increases in cannabis (to limit variables) hoping his behavior will improve.

Before making this change, however, I thought it best to reacquaint myself with a list of Keppra's side effects, a drug known mostly for its negative impact on behavior, albeit one that often offers decent seizure control and which most people tolerate well enough. This is what I found (listed below in alphabetical order) and though I can't know for sure everything that Calvin is feeling and experiencing since he can't tell me, it has confirmed for me what I need to try for Calvin's—and for our—quality of life, which is to take the extra 125 mgs of Keppra away. I've highlighted the side effects I think might be bothering Calvin, some of which, however, are the same ones I could attribute to benzodiazepine withdrawal, except that they were most evident in the days and weeks after the increase in Keppra:

More common

• Aggressive or angry
• anxiety
• change in personality
• chills
• cough or hoarseness
• crying
• depersonalization
• diarrhea
• dry mouth
• euphoria
• fever
• general feeling of discomfort or illness
• headache
• hyperventilation
• irregular heartbeats
• irritability
• joint pain
• loss of appetite
• lower back or side pain
• mental depression
• muscle aches and pains
• nausea
• painful or difficult urination
• paranoia
• quick to react or overreact emotionally
• rapidly changing moods
• restlessness
• shaking
• shivering
• shortness of breath
• sleepiness or unusual drowsiness
• sore throat
• stuffy or runny nose
• sweating
• trouble sleeping
• unusual tiredness or weakness
• vomiting

Less common

• Bloody nose
• burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
• clumsiness or unsteadiness
• discouragement
• dizziness or lightheadedness
• double vision
• earache
• feeling of constant movement of self or surroundings
• feeling sad or empty
• increase in body movements
• loss of bladder control
• loss of memory
• mood or mental changes
• outburst of anger
• pain or tenderness around the eyes and cheekbones
• problems with memory
• redness or swelling in the ear
• seizures
• sensation of spinning
• shakiness and unsteady walk
• shakiness in the legs, arms, hands, or feet
• tightness of the chest
• tiredness
• trembling or shaking of the hands or feet
• trouble concentrating
• unsteadiness, trembling, or other problems with muscle control or coordination

Incidence not known

• Attempts at killing oneself
• being forgetful
• bleeding gums
• blistering, peeling, or loosening of the skin
• bloating
• blood in the urine or stools
• bloody, black, or tarry stools
• blurred vision
• changes in vision
• chest pain
• constipation
• dark urine
• difficulty with moving
• fast heartbeat
• general feeling of tiredness or weakness
• high fever
• increase in body movements
• indigestion
• itching
• light-colored stools
• muscle pains or stiffness
• painful or difficult urination
• pains in the stomach, side, or abdomen, possibly radiating to the back
• pale skin
• pinpoint red spots on the skin
• red skin lesions, often with a purple center
• red, irritated eyes
• sores, ulcers, or white spots on the lips or in the mouth
• stomach pain, continuing
• swollen glands
• swollen joints
• thoughts or attempts at killing oneself
• trouble with balance
• twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
• uncontrolled jerking or twisting movements of the hands, arms, or legs
• uncontrolled movements of the lips, tongue, or cheeks
• unexplained bleeding or bruising
• unusual bleeding or bruising
• upper right abdominal or stomach pain
• weight loss
• yellow eyes or skin

strangers, friends and neighbors

Sunday night after a twelve hour stint in the emergency room, Calvin having endured repeated seizures plus four emergency medications—sedatives meant to quell the seizures—he suffered two more in bed at home. After the second one, neither of which were convulsive, I gave him some extra cannabis oil, mixing the THCA oil with the CBD oil. Thankfully, he didn’t have a third seizure.

All day long Monday and Tuesday Calvin was listless and spacey. I’d kept him home from school both days because he didn’t want to walk and, when he did, his balance was awful. At times he dropped to the floor from exhaustion, dizziness or confusion. The snow, which had again begun falling early Sunday morning, had not relented, laying down inch after inch all day Monday. As Calvin rested I managed to write of his ordeal and after posting it to this blog I received over one-hundred messages of love and concern from near and far, from loved ones, strangers, friends and neighbors. These are but a few:

Hey Doc, no words are adequate.  Just thinking about Mr. C and sending him any karma that’s about.  Best to you and MJK

Hoping that you are all resting comfortably back at home--and that you are enjoying a quiet cup of coffee this morning. Hugs.

I'll call you in a bit. I'm so sorry.

sending you love.

can i give you a piggy back ride, like ANYWHERE all day? i'll wear a special hat with straws sticking out of it--beverage of your choice. then i'll rest you down on a bed of roses and lavender. oh how i love you.

Hugs to you, Calvin and Michael. Any other words just fail me right now...

Oh No! Christy, I am so very sorry. My heart is aching for you. ANYTHING at all that you need, call us. xoxoxoxoxoxo

Please never hesitate to send me texts at the crack of dawn asking me to come get Nellie.

We are thinking about you all -- sending warm and hopeful thoughts your way. We'd love to help with dog care, snow blowing, whatever.

For whatever good it might do: we're thinking of you all, and wishing you all a more peaceful day.

There are no words for how much I hate this for all of you. Sending love. xxoo

Sending love and healing thoughts to you and your family always.

Christy, Calvin knows how much you love him. Stay strong my friend and don't forget to sleep when you can. Sending positive thoughts...

At four o’clock on Monday, my friend Teresa arrived with her daughter Elise and her friend Ellie. Though it was bitter—single digits with cutting winds—the three of them took Nellie out for a walk. Just before they left, Mary arrived with Nellie’s littermate, Gryff, to do the same. Several others had also offered to walk Nellie in the cold. Before everyone got out the door Lauren arrived with a birthday board book for Calvin, and she sat with me while I fed him an early dinner. Then, out of the corner of my eye I saw our neighbor, Brian, snow-blowing our driveway after a day’s worth of constant snow had erased any proof that Michael had cleared it that morning. Crying, I cracked open the door and gestured to Brian—the meaty rumble of the blower too loud for me to be heard—by putting my hand over my heart in gratitude. The look on his face told me that he ached for Calvin and for us and that he wished he could do more. Just as Brian was beginning to clear a path for the mailman I saw Vlad coming down the street plodding behind his blower. Brain handed it over to Vlad, who finished up the job. And when I was about as bowled over by love and affection as I could have been, DeWitt showed up with a dinner that Jane had just made—turkey chili with peppers and cornbread still warm from the oven. They even included a couple of beers.

Today is the first day of sunshine in a while and the first in several that I've been able to get out of the house. Without the wind, single digits this morning felt balmy. I took Nellie to the fields, thinking I could walk on the serpentine trails which skiers and snow-shoers had blazed before me, but I was wrong. In the center of a vast cloak of white, each step I took sunk nearly to the knee, my boots taking on snow until finally I foundered and fell on my ass. Standing up was nearly impossible since the snow gave way beneath my hands so I had to roll onto my knees and get up from there. The final fifty yards to the service road were the hardest and, panting and beginning to sweat, I had visions of folks who climb Everest and wondered why. Finally, with feet on solid ground, I felt triumphant. I thought about our miserable day in the emergency room, about the seizures, about the drugs, about the sleep deprivation, the worry, the fear, about the tense situation at home, and I realized, though it is hard, I'll get through it somehow, by myself or with the help of loved ones, strangers, friends and neighbors.

before Sunday and Monday's snow storm

status

Yesterday, the day after celebrating our son’s birthday—eleven years and one day after riding in an ambulance through an ice storm to Maine Medical Center to undergo an emergency c-section six weeks before Calvin's due date—we found ourselves back in an ambulance, Calvin having suffered a series of difficult to control seizures called status epilepticus. We spent twelve hours there.

Status epilepticus is dangerous, because the longer a single seizure or series of seizures lasts the harder it is to stop them, and the patient risks a swollen brain and/or the shutting down of vital organs. At five a.m., after his third seizure at home and having given him extra cannabis oil after the first one, we gave Calvin rescue Diastat, aka rectal Valium. Rather than putting him to sleep it made him catatonic and we weren’t sure if it had stopped the seizure, so we resigned ourselves to call 911. It had been nearly eight years since the last time we’d had to, back when ambulances idling in front of our home were, regrettably, not uncommon.

Still dark and quiet outside, and as Michael carried our boy out to the ambulance through the falling snow, I gathered some of Calvin’s medicines, the cell phone, my jacket and hat. No time to brush my teeth, drink my coffee, put on underwear, feed the dog or let her out to pee. When I stepped inside, the back of the transport felt all too familiar with the exception that this time I was weeping over a growing boy rather than an infant or toddler. Still, the worry is the same, perhaps worse because this little person has woven his way into me like a bur in a blanket which, if plucked out, my life would no doubt unravel.

At the hosptial we were met by a young female doctor named Teri. We told her of Calvin’s history with seizures and she mentioned having a daughter with epilepsy. I could hardly believe it. In all these years of countless specialists, we have never had one to care for our son who knows, first hand, what it’s like to live with epilepsy. Teri was compassionate and kind, patient and empathetic. I knew we were in good hands, and when her shift ended, her husband Ranjiv, another ER doctor, replaced her. Both of them deferred to our better judgement as Calvin’s parents. Both of them spent considerable time talking with us and helping us make each painstaking decision because, to a great degree, both of them knew what it was like to be us.

For hours, as Calvin went in and out of what we think were complex partial seizures, some brief, others prolonged and with symptoms we'd never before witnessed such as strange growls and intense startle-responses, we discussed emergency meds. We first opted to try a dose of nasal Versed, a short-acting benzodiazepine, which made him sputter and cry and which didn’t seem to do much to stave off the serial of seizures. We watched and waited as Calvin seized then slept, seized then slept. Between fits I managed to give Calvin his noontime seizure meds and a late dose of his morning cannabis oils, but still the seizures stealthily and regularly pummeled him for hours.

Finally, after tries from three separate nurses, one of them successfully set an IV so we were able to give Calvin a bolus of fosphenytoin, however the seizures, though they calmed, did not relent. The sleep-seizure pattern repeated until four o’clock when we finally decided to try a second dose of Diastat with the hopes of returning home to monitor him rather than transferring to Maine Med which we were loathe to do. As I sunk my head into Calvin's neck while he slept, the sickeningly sweet smell of Valium seemed to seep through his pores and I realized, if he were to expire, I'd even miss his smell.

The last dose of Diastat, plus being hydrated after hours without fluids, seemed to stabilize Calvin's condition enough for us to take him home. Before leaving the ER we hypothesized with Ranjiv about why this was occurring. Was it an oncoming illness? Was it the smaller dose of clobazam? Was it sleep deprivation caused from the five straight days waking up around 3:15 a.m. and not going back to sleep? Was it that we hadn't increased Calvin's Keppra to account for his weight gain? Was it the cannabis? Is it that he is in the beginning stages of puberty? What my gut tells me is that we got a little bit greedy with the benzodiazepine wean and simply went too fast, reducing his remaining dose by twenty percent in the course of only three-and-a-half weeks. Or maybe it was just a perfect storm of everything.

Calvin is better today, though still a bit punch-drunk, so I remain on edge, never sure when the next jab or hook might send us to the ropes.

photo by Michael Kolster

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

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

friday faves - spread the word

Isaac Asimov authored one of my favorite quotes, "Never let your sense of morals get in the way of doing what's right."

 
This amazing video demonstrates why we must urgently push for medical marijuana to be legal in every single state, bar none. There is no excuse to do otherwise, though big Pharma will likely use its arsenal to hire lobbyists and put money into the pockets of certain small-minded, power-hungry, fear-mongering politicians.

Today, we will find out if governor Chris Christie of New Jersey will decide to sign a bill legalizing the use of medical marijuana for children. The bill has been sitting on his desk for over two months while parents, like Brian Wilson, whose children suffer catastrophic epilepsies such as Dravet syndrome, sit in fear wondering whether their child will live to see the next day.

It's a crime that our children with epilepsy have to suffer thousands of seizures and succumb to debilitating cognitive deficits because of relentless seizures and the heinous side effects of toxic pharmaceuticals, which by the way don't work nearly half of the time, and all in the name of ignorance, priggishness, greed and fear.

Do what you can, people. Spread the word. Educate. Do what's right. And if anyone in Maine wants to breed marijuana plants tailored to the needs of children with medically refractory epilepsy—high in CBD and low in THC—we need you!
 

i heard about

He said the little boy went to school one day. That day the boy had a seizure. The next day the boy realized that he had lost all of his friends.

I’ve heard it before, heard about the college student who suffered a five minute seizure face down on the sidewalk as people hurried past stepping over her convulsing body. No one came to her aid.

I heard about the man who had a seizure in the boardroom, his colleagues later laughing behind his back.

I heard about the teenager suffering from epilepsy and depression—a common combination—who refused to take her meds, suffered a seizure while driving, rolled the car with all of its passengers, survived to tell about it yet still doesn’t take her meds.

I heard about the boy whose seizures returned while at boarding school, whose teachers hadn’t informed his mother, whose mother let him go swimming during a visit home, who drown while having a seizure.

I heard about the woman who, when her daughter was diagnosed with epilepsy, lost all but a handful of people she thought were her friends.

I heard about the woman who broke her toes against a wall while seizing.

About the girl who broke her nose, broke her teeth, broke her spirit.

About the woman who fell down a flight of stairs during a seizure.

About the mother who lost her only son and the father who lost his daughter and the men who lost their young wives to Sudden Unexpected Death in Epilepsy.

I heard about the man who lives each day in the fog of his twenty-three seizure medications.

About the woman who told no one, for fifty years, that she had epilepsy for fear that she would face discrimination.

About the boy who drown while having a seizure in the bath.

About the child who went brain-dead during a prolonged seizure.

About the girl who went blind because of a serious reaction to an antiepileptic medication.

About the girl with epilepsy who, in fits of drug-induced rage, scratched her mother bloody.

About the parent who refused to tell anyone, even the teachers, that her child had epilepsy and what safety precautions to take if one occurred at school.

About the doctors who tell their patients that they have a seizure disorder but fail to tell them that it's the same thing as epilepsy and that the disorder can be fatal.

About the child with epilepsy who had the entire left side of his brain surgically removed.

About the boy who endured several dangerous induced comas in an effort to thwart near constant seizing.

About the children born healthy and vital then succumb to epilepsy, suffer hundreds and thousands of seizures, endure the wrath of scores of antiepileptic drugs and their side effects and fall into a state of serious mental deficit.

About the boy—my boy—who began having seizures at eighteen months, who has tried and failed nine anticonvulsant drugs and two dietary therapies, who cannot walk by himself, cannot utter a word, endures heinous drug side effects and still suffers the seizures.

I've heard it all before. So, now, have you. Go out and tell it to the world so we can find a cure and an end to all of this suffering.

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

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.

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

friday faves - status

During the first year and a half after Calvin’s epilepsy diagnosis we found ourselves—miserably—in the hospital at least a dozen times. I’d call the ambulance, they’d rush him to the emergency room of our local hospital, and he’d be transferred via a special pediatric transport team to the Maine Medical Center in Portland, thirty minutes from our home. There he’d be admitted to the pediatric intensive care unit (PICU) where we’d stay for up to three days. All this because of something called status epilepticus.

Status, for short, is a serious, life-threatening prolonged seizure, or series of seizures. In Calvin’s case, he’d have eight to ten seizures in a row. Every forty-five minutes he’d wake to a seizure then fall back to sleep only for it to happen again and again. After that many seizures he’d go into a tonic-clonic (grand mal) convulsive seizure that would last twenty minutes or more. Once he had a forty-five minute seizure that we feared would take his life. I was literally kissing him good-bye when he finally came out of it.

The longer a seizure goes the harder it is to stop and it will eventually cause brain damage and failure of the vital organs. It’s as simple—and devastating—as that.

On a repeated stay in the PICU I recall a doctor about our age, perhaps a few years older, whom I’d seen there on previous occasions. He wasn’t too tall, had longish, curly hair that was stylishly messy and a handsome layer of facial stubble. He looked like the kind of doc you see on those prime-time hospital television series. The doc loitered around the PICU wearing jeans, a plaid shirt and a fleece vest, then rolled open the glass door to Calvin’s room and stepped in. “I’d like to have a talk with the two of you,” he said in a southern accent, like Matthew McConaughey, who he kind of resembled. “Have a seat,” he continued. “I prefer to stand,” I replied. He insisted I sit. I didn’t, because there was a hint of condescension in that smooth southern drawl and I wasn't going to let him look down on me, too. I was his equal and he needed to know that.

For at least fifteen minutes he passive aggressively lectured us on how we needed to relax about these seizures so we could find a way not to end up in the PICU so often. As he feigned true concern I listened to his mellow rant and then asked, “Do you have kids?” He told us of two, an eight year old and a six year old. “Do they have intractable epilepsy or some other serious illness?” I asked. “No,” he replied blandly. I continued, “then you can’t really know what it’s like, can you? Even though you probably see a lot of kids in here suffer from seizures, perhaps even die, you can never really feel the anxiety and/or smell the fear of death from one of these bad ones.” I had his attention so I went on, “We’d love not to be here, but Calvin keeps having status, and as long as he does, we’re coming. Now we’d like some privacy, thank you.”

Regrettably, in the following months we landed in the PICU several more times and though we got glimpses of that same doc, he never approached us again. That was just fine by me.

It has been over four years since Calvin has been admitted to the hospital for seizures. We hope to never find ourselves there again, though until his seizures are controlled, the risk, the uncertainty and the fear, will never go away.

Originally posted 10.11.12

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

photo by Michael Kolster

friday faves - kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the bar of our local sushi joint and were pampered by the lovely young and vivacious manager, wearing her slim peachy summer frock. We noshed on sushi and tempura while drinking cold fizzy unfiltered sake from tiny cobalt glasses. Some boisterous college students crowded around tables behind us dunking over-sized straws into large hand painted bowls filled with rum and fruit juice.

As the night wore on, and a green pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the girl (and I don’t use the word in the pejorative sense that many men and women who I know use it) can kick some major ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has.

I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. The dose was changed with no apology or recognition of error.

My friend listened to me describe the painful, bloody emergency intubation that my babe had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin before and thus it was carried out amidst his thrashing and terrified shrieks of pain. I told her about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which then I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids who can’t walk by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength (luckily we and the boys are resilient as spiders silk, the strongest fiber known to man.) These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy drop earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.

 

Originally published 09.12.11

 

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

 

photo by Michael Kolster

normal?

The other day, when I was openly lamenting my son's condition, a medical professional who I've never met and who has never laid eyes on Calvin asked me a question that—regrettably—I know the answer to all too well.

"Christy," she said with an air of condescension, "are you aware that it is normal to stop breathing during a seizure?" My answer was as plain as the nose on my face and as bitter as the anticonvulsant pills we shovel into Calvin's mouth day in and day out, "I am aware it is common, but I wouldn't call it normal."

In my mind I thought, there's nothing normal about a seizure and its manifestations. Then I dreamed up some questions I'd liked to have asked her if I'd had the opportunity:

Have you ever seen a seizure? Have you ever seen a child having a seizure? Have you ever seen your OWN child have a seizure? Have you ever seen your child stop breathing for over two minutes during a seizure, as if being strangled? Have you ever seen your child have hundreds upon hundreds of seizures, stiffening, jerking, turning blue? Have you ever seen your child have a day filled with seizures? Have you ever seen your child have to be emergency intubated—screaming in pain and fear—the cannula that was one size too big being shoved in, then bloodily fished out of his throat? Have you ever had to restrain your child during countless unsuccessful, painful attempts at threading an IV, the needles bruising his delicate flesh? Have you ever seen your child have a forty-five minute seizure when you were so sure that he'd die that you started kissing him goodbye?

No? Somehow I didn't think so.

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

cluster bomb

This morning my sister and I put Calvin into the stroller to set out on a walk with Rudy the dog. As I bundled up Calvin in a thick fleece blanket suddenly the color drained from his face, his eyes began jerking and fluttering, his mouth slackened and he turned pale and listless. "He doesn't look good at all," I said, so we quickly took him out and I ran him upstairs to secure him in his bed. He seemed to perk up so I gave him his orange plastic football and grabbed the opportunity to take a much needed shower. I put the baby monitor at maximum volume and set it on the windowsill near my head. Lathering my hair I heard him coo and shriek as he played with his favorite toy.

As I stepped out of the shower, though, he became silent again so I hurried into his room calling, "Calvin!" He was lying on his back at the foot of his bed, football firm in his grasp, with a slightly flushed, expressionless face. He did not respond to my words. Suddenly, he snapped out of it again, though he seemed very tired so I dragged him up onto his pillow, covered him and tucked him in. Again he silenced as the sickening pallor crept over his face. I noted an almost inaudible click escaping from his lips—a sound I regrettably know all too well from his countless partial seizures. With eyes just shy of half-mast he drifted off to sleep. The insidious cluster of seizures seems to have returned.

I'm watching him sleep like a hawk right now, peering down through the safety netting atop his bed. His parted eyes look dead. These are the kind of seizures that repeat themselves throughout the day and can develop into status epilepticus, the serious, sometimes lethal condition of serial or prolonged seizures often difficult to stop. These are the cluster bombs that can resist emergency medication, put us in the ER—sometimes requiring emergency intubation—and eventually land us in the pediatric intensive care unit fearing the very worst. These are the stealthy seizures that come out of nowhere—like a menacing thug in some dark alley—and silently batter our little boy's brain.

Kids die from this stuff, I think to myself. And yet most of the world has no clue—thinks epilepsy is a benign condition where you take a pill and everything is okay. Oh, how I wish it were so.

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

terms a mother shouldn't have to learn

ventriculomegaly
SUDEP: sudden unexplained death in epilepsy
cyanosis
status epilepticus
electroencephalogram
tonic-clonic
hypotonia
beta-hydroxybuterate
lobectomy
AED: antiepileptic drug
medically refractory epilepsy
intubation
polytherapy
phlebotomist
periventricular leukomalacia
hypoxia
tachycardia
post-ictal
comorbidity
oxygen desaturation
ataxia
epileptiform discharge
toxic epidermal necrolysis

parents' perspective

Sometimes I feel like no one gets it. Yesterday I had to bring Elija to the ER because of some rapid seizures. I’m having a hard time getting him to take his medication because one of his new symptoms is tongue thrusting and excessive drooling. He has to take liquid Depakote three times a day, two syringes full each time. So clearly this is a constant struggle. I told the doctor how exasperated I am with the situation and said I wasn’t sure what to do. The doctor informed me, quite matter-of-factly, “Perhaps you should try harder.”

Waterville, Maine
 
Today Ronan had several rolling seizures, and when Rick swam with him to the opposite end of the therapy pool, this day before the day of the full moon, I imagined the day when Ronan’s body will not just float away to the other side of the pool—a sight I can barely stand—but will be gone

Santa Fe, New Mexico

Lisbeth was normal and healthy until the onset of her seizures at the age of six due to a traumatic brain injury caused by a viral illness. One of the most painful aspects of this turn of events was the before and after of her/our life. We lost the little girl that she was. It was a death of sorts.  And Lisbeth has had the torture of remembering her old self—popular, spunky, bright—as compared to her new condition with constant seizures, severe learning disabilities and deficits, and days on end of post-ictal fog.

Woolwich, Maine

When he had seizures (every night, multiple times) he would hold his breath. This breath holding would alert the heart to pump even more blood to the brain, making the heart increase in size until a wall finally blew out ... My wife and I live every day missing him.

Auburn, Washington

I heard Elijah behind the sofa banging around and I assumed falsely that he was playing with his toys. My boyfriend came in the front door and screamed. I turned around and there Elijah was, his face ashen gray and his lips blue. He wasn't breathing and his body was rigid.

Waterville, Maine

Poor guy seized when on hands and knees, crashed to the wood floor and broke a tooth - could have been worse as we all hear so often. It still sucked and we are freaking out about how to protect the little guy.

South Portland, Maine

Details about Eoin: no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Newburyport, Massachusetts

Watching her adjust to the Keppra has just reminded me how powerful these drugs are. She was just so out of it during the day. She seems tired and a bit drugged. It stinks because I over-analyze all of her behaviors now ... can't just let her be tired, I am always reading into it. She struggles so much in school.

Cape Elizabeth, Maine

We tried weaning her off her med. Soon as she was off her med, the seizures came back and now she is on double the med that she was on and we still can't stop them. So frustrating. I can't figure out why the same formula of Keto diet and a certain dose of med didn't bring her back to the place where she was seizure free for so long.

Spokane, Washington

We gave her Diastat (rectal Valium) to stop the seizure ... the entire scene at the pool with strangers and my other kids freaking out just added to the situation ... I cannot separate the drama from the actual seizure ... This is awful.

Cape Elizabeth, Maine

Our daughter Savannah was healthy and typically developing until age two.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures "attacks" and "spells," but never seizures, and we were repeatedly told she would outgrow them.  Savannah is now 18 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.

San Diego, California

Please share Calvin's Story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

drawing by Martha Miller

running home

Within the first year or so that Calvin was diagnosed with epilepsy we made scores of calls to 911. Of those, he was taken to the emergency room of our local hospital about a dozen. At least half of those times he was transferred, via ambulance, to the Maine Medical Center which has a pediatric intensive care unit.

Those calls and visits were made because Calvin suffered large clusters of five or more seizures that recurred every 45 minutes to an hour and which often culminated into a prolonged seizure, once as long as 45 minutes. This condition is called status epilepticus and with it comes terrible risks. The longer a seizure lasts the harder it is to stop. Status epilepticus can cause brain damage and can ultimately result in the failure of vital organs which in turn can cause death.

Because of the frequency of those episodes I found it difficult to leave the house. Although I had the help of a nurse taking care of Calvin a few days a week I was petrified that the one time I'd leave the house might be the time that Calvin would expire. However, I also knew that I had to live my life, take care of errands, walk Rudy the dog or simply catch a breather.

We live just a few blocks from the college where my husband teaches photography. It's a nice campus with large white pine and maple trees, tangled magnolias, beautiful brick buildings, a stone chapel and wide open grassy spaces for me to stroll while Rudy chases squirrels.

I can remember, on several of these strolls, hearing the blaring siren of an ambulance careening down the main street flanking the campus and headed in the direction of our home. Instantly my heart began to race. Panic-stricken, I broke into a full sprint and did not stop until I had run several blocks and could see that the ambulance had bi-passed our home. Only then was I assured that Calvin was safe.

And although it has been years since Calvin's last transport to the emergency room my heart still sinks whenever I hear the sound of an ambulance.

Originally published in October 2010.

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Give: http://www.calvinscure.com

Bowdoin College campus