a danger within us?

Way back when Calvin had tried and failed his first several antiepileptic drugs, I learned about the VNS (vagus nerve stimulator), a device much like a pacemaker surgically implanted under the collar bone with a wire that wraps around the vagus nerve in the neck leading up to the brain. The device, as I understand, sends regular electrical impulses to the brain in an effort to thwart seizures before they begin. When it was suggested as a possible therapy for Calvin's epilepsy, my gut told me, no way.

My misgivings and questions were many: How effective is it? Are long term side effects yet known? How long do the batteries last? What happens when they fail? I don't want my son to go under the knife; on account of his fucked-up brain, his flawless body is most sacred to me.

I've stuck with my position all these years, having heard since then about mediocre results and nagging side effects of the VNS in children whose parents I know.

Yesterday, my dear friend Elizabeth Aquino alerted others in her blog post about some dangerous findings—cardiac and otherwise—resulting from implanted medical devices, in particular the VNS.

You can listen to the Fresh Air interview below, in which medical journalist Jeanne Lenzer, whose recent book, The Danger Within Us, exposes these risks. You can also click on the title of the episode to read the transcript from the show.

tell it like it is

The pained looks on some of their faces made me sad. I wondered what they were thinking as I shot image after image onto the screen. Some of the still photos seemed to evoke similar responses to the video of Calvin's grand mal seizure from a few years ago. Did any of them have a brother or sister with epilepsy? Did any of them suffer from the disorder themselves?

This spring I was again asked by my friend Hadley to give a talk to her neurobiology class at Bowdoin College. It is a chance for the students, many of them pre-Med, to see a different side of neurobiology, one not seen through a microscope but through a distinct kind of lens—the patient one. I was also asked to give the same talk to my friend David's public health class, also at Bowdoin. I was most grateful for the opportunities.

Getting in front of so many sharp students and telling it like it is feels second nature, reminds me a little of my days of coaching swimming, looking out at the pool of bright faces filled with curiosity, hope and excitement—perhaps even a natural uncertainty—for the future. My hope is that my hour-long show of photographs and anecdotes of life with Calvin can somehow make a difference in how they see the world of health, medicine and disability.

I start by telling them about the white matter that is missing in Calvin's brain. I tell them about his premature birth, his first seven weeks in the hospital, his atrocious vision, his low muscle tone, his poor balance and coordination, his developmental delay, his form of autism, his incontinence, his inability to speak, his need for constant surveillance. Calvin, with all of his difficulties, I say, would be a piece of cake to handle if not for the epilepsy, the drugs and their side effects.

I tell them about the condescending physicians with chips on their shoulders. I tell them about the ones who dole out prescriptions for benzodiazepines like candy and yet don't seem to have a clue about how to wean them nor know the list of heinous side effects withdrawal can cause. I tell them about the neurologists who seem laser-focused on stopping seizures at any cost but seem blind to quality of life. I tell them about the doctors and nurses and technicians who placate me when I ask them to give Calvin their best phlebotomist or intravenous technician. I tell them about the neurologists who reject cannabis as medicine because of their fear and ignorance or perhaps their collusion with big Pharma. Then I tell them about the physicians who have partnered with me, who treat me as their peer, who aren't afraid to help a child even if it might cost them, who are open to new ideas and who aren't afraid to advance the treatment of epilepsy with cannabis.

After Calvin's sixth day in a row of seizures—thankfully only one of them being a grand mal—I began fearing daily ones might become our new normal and that I might have to cancel my presentations. But the spate broke the other night when I gave Calvin a small but concentrated dose of THC tincture made of cannabis flower, organic alcohol and oil. I've given it before, but in my best memory, never to stop a cluster of partial seizures at night. I can't know for sure, but it seemed to work two nights in a row.

Back in the classroom, many of the students were interested in the cannabis aspect of Calvin's story. They wanted to understand drug policy. They wanted to understand how I made the oil and how difficult it was to get a physician to recommend it for my child. One of them commented on how absurd it is that the government still prohibits cannabis use in the face of mounting evidence that, not only does it help, but that it is not as dangerous as other drugs. I began telling her about the reasons behind negative government propaganda from the 1930s and how the bogus racist argument fueling cannabis prohibition has shaped cannabis and law enforcement policy and has lead to the wrongful mass incarceration of African Americans, many of them innocent.

One student who had read a fair amount of my blog wondered why I wrote so much about politics. I told him that Calvin informs my opinions of things and that he has made me realize, more so than I did already, that marginalized communities suffer and face undue discrimination. I explained that if I could help folks understand the hardships disenfranchised people—the disabled, people of color, immigrants, LGBTQ people and Muslims, for instance—face on a daily basis, I might inspire empathy for them, and perhaps make folks think differently about public policy. I told him that since Calvin is non-verbal, I must be his voice, and that the same can be true of others of us who can advocate on behalf of people whose voices, because of fear and oppression, have been quashed.

In reflecting on my presentations, I realize one thing I left out: my little Calvin has emboldened me to speak more of my mind, to shout if I have to, to challenge authority, to voice frustrations, criticisms, and uncensored opinions. He inspires me to be evermore fearless amidst an oppressive, nonsensical, patriarchal, puritanical, often backwards world. Tell it like it is, he says to me in his singular kind of way. It may pain people to hear it, but how can I refuse?

Calvin, telling it like it is. Photo by Michael Kolster

the subversion of quackery

Written by Elizabeth Aquino from her blog a moon, worn as if it were a shell

quacksalver

PRONUNCIATION:

(KWAK-sal-vuhr) 

MEANING:

noun: A quack: one pretending to have skills or knowledge, especially in medicine.

ETYMOLOGY:

From obsolete Dutch (now kwakzalver), from quack (boast) + salve (ointment). Earliest documented use: 1579.

I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

I lay in bed after the seizure thinking back over the years of her seizures and the years of various doctors' prescribing her anti-convulsants. I thought about the combinations of these drugs—22 of them—their effects on her brain and body systems, how none of them worked, how her seizures still came and how they, the drugs, wreaked more damage, arguably, than the seizures themselves. I thought about the moment when she was nine months old, writhing and screaming uncontrollably all day and night, when I asked the esteemed neurologist whether my baby might be reacting to the combination of the three drugs he had her on, one non-FDA-approved and the other two approved for use in adults. I thought about his response, a hmmmmm over the telephone that stretched into infinity, followed by that's an interesting idea and then the universe tilting on its axis, folding up and disappearing into a black hole from where it had been birthed. I knew in that moment that no one knew what was up with my baby, and if my suggestion was a good idea (I was 31 years old with a Bachelor of Arts in English and French Literature and a Pastry School certificate), we were traversing a no-man's land.

I thought about the moments when we injected her with five vaccines to protect her health and yours, her tiny mouth an O, the subsequent scream that stretched out for years, my own a mirror image. I thought about the derision, the mockery that those of us who question vaccine safety have been subject and then the smugness of Science.

Quack.

I thought about all those moments this morning as I lay beside Sophie, and then I thought about the thousands of families still subject to the multiple drug combinations that these doctors are still peddling, how a young woman contacted me last week to tell me that her 18-month old baby, on four drugs, was still seizing. I thought about the compulsory and draconian laws that were recently passed in California regarding vaccinations and how grateful I am not to have any babies subject to them. I thought about the CBD and the THC and the fight to get it and then the getting it and Sophie's immediate response. I thought about my great good fortune in meeting Ray at Realm of Caring and Dr. Bonni Goldstein and living in California where we have access to high quality cannabis. I thought about the Coloradans: the Stanley brothers, Paige Figi and Heather Barnes Jackson, all of them instrumental in shifting Sophie's path and countless others. I thought about the FACT that Sophie is now off nearly 80% of one drug and 65% of the other, that these two drugs have done irreparable harm to her, even as they are withdrawn. I thought about the cavalier attitude that most neurologists have toward cannabis, their caution and their ignorance. I thought about Obama's acting Drug Enforcement Administration Chief's statements on November 12:

"What really bothers me is the notion that marijuana is also medicinal -- because it's not," Rosenberg told reporters last week. "We can have an intellectually honest debate about whether we should legalize something that is bad and dangerous, but don't call it medicine -- that is a joke.""There are pieces of marijuana -- extracts or constituents or component parts -- that have great promise," he continued. "But if you talk about smoking the leaf of marijuana, which is what people are talking about when they talk about medicinal marijuana, it has never been shown to be safe or effective as medicine."  

I thought about the wheels of Big Pharma, churning, trying to catch up. I thought about their influence on Science's practitioners, how they pay them to promote and advertise their products, ensure their profits. I thought about the money they must set aside for those damaged by their products, how they are shielded and how little it matters to their bottom line. I thought about quackery and the subversion of quackery—when what is considered Science is actually not Science at all.

Quack. Quack.

I thought about those who come here and tell me that I'm too angry, that I complain too much, am terrifying, a miserable person. Is there a word for a reverse black hole? For chaos pushing outward, inward? If I were an angry person, I would have long since disappeared. You don't watch your daughter seize for nineteen years and suffer from terrible side effects of drugs and vaccinations that you gave her in good faith and then see her improve dramatically with an oil from a plant that anyone can grow and stay angry. You'd be dead, and I'm very much alive.

Repeat. I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

Quack. Quack. Quack.

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, but with glasses. “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 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.

Please help us find a cure for epilepsy by sharing Calvin’s Story. We do the hard work, you just push a button.

photo by Michael Kolster

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 I.V. 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)—stories that might have been 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 expressively 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.

medical practice

When Calvin started having seizures when he was only two years old, we made countless trips to the emergency room of our local hospital. It quickly became clear that the hospital could not always handle Calvin’s complicated health, particularly since it lacked a pediatric intensive care unit. So, a half dozen times or more, after dangerously prolonged seizures, the Maine Medical Center’s pediatric emergency transport team came to gather Calvin and shuttle him thirty miles to their facility in a special pediatric ambulance.

On one occasion, after a twenty-minute seizure, Calvin landed in a cramped room in that hospital’s emergency department. White coated doctors and nurses buzzed around him taking vital signs and asking me about his medical history. I rattled off the long list of his diagnoses followed by the long list of his medications. Calvin had a fever and a rash all over his body. The attending and resident physicians suspected meningitis. We were told that, to confirm their theory, they were going to perform a spinal tap on Calvin, a painful and risky procedure that could result in paralysis. I feared that that course of action might also trigger another seizure, the kind most feared, the kind that never stops.

As Michael and I were expressing our grave concern about the spinal tap fresh resident and attending physicians took over and discussed Calvin’s case. The attending doc posed thoughtful questions to the intern regarding the nature of Calvin’s rash that might indicate the likelihood of meningitis. They determined that it was not meningitis and, with that, Calvin was spared a dangerous and distressing procedure.

We’ve been up against these types of quandaries time and time again since just before Calvin was born. My husband always reminds me, regarding the nature of the medical field and its infinite uncertainties about cases such as Calvin's, “that’s why they call it a medical practice.”

photo by Michael Kolster

phlebotomy neurology psychology

Yesterday we drove to Boston to see Calvin's neurology team. Up at five, out the door by seven-thirty, in Boston gridlock by nine forty-five and at the hospital by ten to draw blood.

After the long drive, Calvin having screamed the entire first hour, we were already exhausted, as if we had driven seventy-five the whole way with all four windows down, cars and trucks roaring by. But shortly after checking in and seeing Francoise's smiling face, her dark skin gleaming against her bleached white lab coat, we breathed a sigh of relief.

Francoise is what we call our "one stick wonder". To say she is a pro at drawing blood from kids like Calvin who are a "hard stick" because of their low muscle tone is a gross understatement. She is practically a miracle, the only phlebotomist who gets it first try every time, and then it gushes like Old Faithful, which is a very good thing. Yesterday was no exception. I offered to move her up to Maine where our experience with blood draws is often painful for all of us, but mostly for Calvin who must endure restraint, tight tourniquets and steely needles poking, prodding and fishing around in his arms, hands and ankles, sometimes to no avail, leaving bruises all over his body and to our psyches.

Next, Calvin's neurologist and dietitian greeted us with hugs and spent a relaxing hour discussing Calvin's seizure activity, behavior and various plans of action. Like always, they mostly listen, answer our questions, validate our suspicions and offer options for moving forward. They let us steer the boat, the ultimate decision being ours. We are the best team in the world. We troubleshoot, weigh risks versus benefits and utmost in our minds is quality of life, for Calvin and for us.

For now we will hold steady on Calvin's two antiepilpetic medications, knowing there is room to move up on both, though hoping it's not necessary. We will enjoy transitioning fully off of the Ketogenic diet which we have been weaning Calvin from over the course of eighteen months. We will continue to be tireless advocates looking for ways to stomp out Calvin's seizures.

The drive home was relaxing. Calvin was calm and collected, playing with his bare feet and putting his toes in his mouth much of the way. When he's cute, he's damn cute. When he's not, he's so not. These days, mostly, and with the help of his neurology team's tenacity and our thoughtful analysis, he's mostly damn cute. For now, anyway.

gamma globulin

Seven years ago this week Michael and I had just returned home from Beth Israel Deaconess and Children’s Hospitals in Boston. At 33 weeks gestation, I had spent the day undergoing a tiresome series of tests and screenings, including a fetal MRI. The radiologists and neurologists believed they saw in the magnetic images evidence of slight hemorrhaging in Calvin’s brain. They surmised a clot had created a backup of cerebral spinal fluid causing his lateral ventricles to enlarge, thus damaging a significant amount of his white matter. The theory was that a platelet incompatibility between Michael and me might have induced the bleeding. Their solution was to give me an IVIG–Intravenous Gamma Globulin—a plasma protein blood product described to me as an anti-antibody-antibody. In other words, the IVIG was meant to kill off my antibodies, which appeared to be killing off Calvin’s platelets. At least that was the idea.

The procedure, which took place in a sterile florescent-lit room at five o’clock in the evening, and which was supposed to take only two or three hours, took nine. I laid in bed while the nurse administered fluid from several consecutive clear plastic IV bags, drop by drop, into the vein in my arm. The contents of the bags were painstakingly concocted in the blood bank in the hospital's bowels, no doubt by white-jacketed technicians wearing latex gloves. What was nine hours seemed more like an eternity, staring at mostly blank walls punctuated with shining fixtures, black hoses and plastic wrapped instruments. The minutes inched by as we sat wearily, the desolation broken, occasionally, by squeaks and shuffles of rubber clogs on the waxed linoleum floor. At 2:30 a.m. we finally left the hospital, completely fatigued, and drove on deserted streets to the nearby home of a kind physician—a friend of my sister’s. She met us at the door and showed us quietly downstairs to a dimly lit, cozy basement room. After a solid, albeit brief, sleep we awoke early and embarked on our three hour drive home to Maine.

In an effort to avoid further complications in utero, an early cesarean had been scheduled, in Boston, with scores of specialists and some blood bank donor platelets for Calvin if he needed them. But a few days after returning home from Boston, not long after the IVIG, in the middle of the night my water broke. We were at week 34, in the heart of an ice storm and Calvin had started making his way into the world.

Please donate this month to epilepsy research for a cure, on behalf of Calvin, at:

http://www.calvinscure.com

mortality

The other night I got Calvin ready for bed, something that Michael usually does. I had him sitting up on the changing table to take off his robe and slippers. He reached for me, put his arms around my neck and pulled me into a tight embrace, then he gave me a rare kiss on the nose—a nice long one. At that moment I became sorely aware of a familiar, weighty feeling that it could be the last time I’d be saying goodnight to my sweet boy, and to treasure the moment.

The next day I read about a new study that has determined that the mortality rate in individuals with childhood onset epilepsy, such as Calvin, is three times higher than once expected, at 24%. Two factors that play a major role in contributing to the high mortality rate are the lack of seizure control (referred to as medically refractory or intractable epilepsy) and the presence of remote symptomatic cause of epilepsy (i.e. major neurological injury or insult as a cause of epilepsy).

Unfortunately Calvin’s epilepsy is intractable. He’s tried eight antiepileptic drugs and two vigorous diets in the nearly five years since his diagnosis and his seizures continue to be reliable. Because Calvin was born with significant neurological complications of unknown origin, causing cerebral palsy, global developmental delay, low muscle tone and visual impairments—to name a few—it is difficult to know with certainty if his seizures are the result of neurological injury. The medical consensus has been that the absence of white matter in Calvin's brain appears to be a developmental blip rather than the result of trauma in utero. I begin to wonder, however, if the scores of lengthy seizures, several upwards of twenty minutes and as long as forty-five, plus an extended four-hour period of seizure activity, has caused further devastation to Calvin's brain and thus contributed to his ongoing seizure disorder.

The other surprising and unsettling finding in this new study is the high SUDEP (Sudden Death from Epilepsy) rate. Ten percent of the individuals in the study group died of SUDEP during the follow-up period, but SUDEP accounted, substantially, for 40%—nearly half—of all deaths combined.

Before Calvin was diagnosed with epilepsy I thought it was a benign disorder for which one simply takes a pill and all is fine. I soon learned that it’s not—not even close. And until we can find a cure I’ll continue to lose sleep over my precious, irreplaceable, little boy, Calvin, and at night I'll always wonder if he’ll wake up the next morning.

For more information about SUDEP please see:

SUDEP
SUDEP Facts

keto kid - part one

The only thing that might begin to resemble a cure for epilepsy is the Ketogenic diet. It’s unfortunate that the diet works only for a smattering of people, usually children, but at least it can work, though many conservative neurologists remain skeptics.

Soon after Calvin's diagnosis and while researching the diet (his local neurologist never mentioned it) I learned it had better efficacy when begun early in the treatment of seizure disorders. So, in March of 2008, when Calvin was four, we checked him into Massachusetts General Hospital for the three-day initiation.

We were hoping, as do all parents who put their kids on the diet, that Calvin would be one of the lucky few—the five to fifteen percent, or so, of children who try it—whose seizures would stop within a matter of days after starting the treatment.

We first had to fast Calvin for twenty-four hours to put him into ketosis—the state in which, for three thousand years, seizures have been known to stop. In the hospital they monitored his heart rate, oxygen saturation and respiration. His blood and urine were screened for ketone bodies, or ketones. The diet mimics fasting or starvation by increasing fat and severely limiting the amount of carbohydrates ingested. The liver converts the fat into fatty acids and ketones which pass into the brain and replace glucose as an energy source. An elevated level of ketones in the blood can lead to a reduction in the frequency of epileptic seizures, though it is not yet known whether it is the ketones themselves, or some other coexisting mechanism responsible for the effect.

Calvin’s first meal in the hospital consisted of egg, mayonnaise, cheese, heavy cream and melon. It didn’t sound too bad until we weighed it out on the sensitive gram scale, to the tenth of a gram. The boiled egg–yolk and white weighed separately and just enough to fill a tablespoon—were mixed with a similarly sized dollop of mayonnaise, and a small slice of cheese on the side. The diminutive portion of cantaloupe, about the size of a grape, shocked me. Calvin had to drink the heavy cream.

Dolefully, I contemplated the meal which was minuscule due to the high fat accounting for most of the calories. I worried that Calvin, who had always had various difficulties with eating, would refuse this strange new menu. I felt badly that he could no longer enjoy his favorite crispy graham crackers, orange cheese puffs and an unlimited supply of crunchy sweet grapes. After all, there were so few things Calvin really got to enjoy in life.

But, being the superkid that Calvin is, he choked it all down—every required morsel—and every bit of fat scraped up with a spatula. That night he got sick twice, but overall the initiation went smoothly and on the third day we were released from the hospital to try it ourselves at home.

To be continued

drugs suck

Ugh. Or rather “insert F-bomb here" to quote a clever friend of mine. I just nervously and reluctantly gave Calvin his new seizure medicine. His other one has seemed to have maxed out its effectiveness. This one, his eighth trial, is salmon colored and oval with a score mark indicating where to cut it in half, which I did, revealing the mysterious chalky white substance that comprises all seizure drugs I have thus encountered. Drugs suck, but they are a necessary evil when it comes to epilepsy.

Prior to burying the half-pill into Calvin’s yogurt I had read up on this new drug to preempt any surprises and to ensure he was getting the correct initial dose. The first seizure med that was prescribed for Calvin was accidentally double-dosed by the hospital’s covering neurologist and Calvin went ballistic. We caught the error immediately and, without admitting fault, the doc cut his dose in half.

The side effects we need to look out for this time are no different, really, than all the other drugs: somnolence, vomiting, headache, fatigue, dizziness, nausea, decreased appetite, rash, ataxia, diplopia, psychomotor hyperactiviy, abdominal pain, aggression, etcetera, etcetera.

Poor kid. He has to deal with so much and now this. We just spent the last eighteen months reducing his seizure meds from four down to one and now we have to add another because the damn seizures keep rearing their frigging heads. Would some brilliant researcher please find a cure? We needed it yesterday. Insert F-bomb here.

intubation

Just after Calvin turned two we were on a plane returning from a visit with Michael’s parents. Mid-air, Calvin became pale, as if in shock, then he vomited and fell asleep. We figured he was just airsick.

At home later, and just after I had fed him dinner, all color drained from Calvin's face. He slumped in his chair and, with a sour look, started gnashing his teeth and vomited again. I had seen this suspicious behavior a few times in previoius months and although it seemed perhaps he was ill, or might have eaten something that didn't agree with him, my gut told me differently.

The next day the suspicious behavior continued until it finally culminated into an unmistakable seizure. We immediately dialed 911 and the medics arrived at our house in minutes. I don't remember how long his seizure lasted, but I do remember I was very frightened and concerned. In the emergency room I spoke with his pediatrician on the phone. She decided it was best to keep him overnight for observation. Our local hospital did not have a pediatric intensive care unit (PICU) so, after Calvin stabilized, they wheeled him upstairs to the ICU.

Calvin was tiny, even for a two year old, and the ICU nurse couldn’t find a pediatric oxygen mask for his room. Her solution was to punch a hole in the bottom of a Styrofoam coffee cup, insert the oxygen tube through the hole and place it in the steel-barred crib near Calvin’s head in case he needed it. I was dumbfounded at her remedy, but what was I to do? His pediatrician arrived and began examining him when he started to seize again. With her stethoscope to his back she said soberly "he's not breathing." I panicked. She yanked the oxygen tube out of the coffee cup, held it under Calvin's nose and sternly ordered the nurse to find a pediatric mask. Everything blurred and morphed into slow motion. An eternity later a mask was located. Calvin’s doctor placed it firmly over his mouth and nose and she began to squeeze the red, pleated bag inflating his lungs.

The intensivist who had been called determined that Calvin needed to be intubated immediately—no time to wait for an anesthesiologist. A wall of white-coated figures encircled our tiny son as they placed him, wearing only his diaper, on a gurney. The intensivist began the procedure, feeding the clear plastic tube through Calvin’s mouth and pushing it into his trachea. Calvin began to scream—he was breathing. I was in shock and too ignorant to question the decision to intubate and, at the time, I had little choice but to believe that they knew what they were doing. Distressed and trembling—my child's muffled cries gruesomely echoing through my body—I wanted to run to him, but Calvin was fenced in. A nurse asked softly if I wanted to leave. Leave my child? And though Calvin was still breathing they continued their torturous mission. The doc tried several times to cram the tube down Calvin’s throat, but to no avail. Eventually he determined that the tube was too big. With my hot face buried in Michael’s chest, I turned to see the doc pulling out a bloodied tube as my baby arched and screamed and sputtered.

To our horror, a second, smaller, tube was then initiated. Again Calvin shrieked in agony and tried to escape their restraint. In my terrified daze, my boy's stifled shrieks eerily commingled with the strange voices and sounds in the ICU. Lights and shapes shifted and blurred in my flooded, swollen eyes. Michael stood with stoicism—his tight embrace shielding me from our horror—but his eyes, too, were red and moist.

Finally, the intensivist threaded Calvin's trachea. We rushed to his side as each white overcoat splintered off. Our baby boy was crying, hurt and confused, and I held him. I held him and I did not let go.

photo by Michael Kolster

good docs and bad docs

Since Calvin’s birth we have made the acquaintance of dozens of doctors including various neonatologists, several anesthesiologists, a couple of intensivists, five pediatric neurologists, a few gastroenterologists, an urologist, two geneticists, an ophthalmologist, a neuro-ophthalmologist, a nephrologist, an osteopath, an endocrinologist, a pulmonologist, some radiologists, a few epileptologists, several pediatricians, a developmental pediatrician, and a sleep specialist. Some we’ve considered pretty bad, others rated so-so, many have been good and a select few are downright remarkable.

You know you’ve met a bad doc when she tells you that you have to worry. Some docs crank up and up and up on your child’s seizure medicine—sometimes to toxic levels and in the face of your obvious doubt—even though it doesn’t seem to be making a difference. Bad docs have chips on their shoulders, are haughty, condescending and indifferent. These docs hate questions yet they act as if they have all of the answers.

Good docs, on the other hand, embody everything of value that one would expect from a close friend. Expert listeners, good docs also treat you as the equal that you are and encourage you to call them by their first name. They acknowledge that you know your child best and consider you an integral member of their team. A good doc listens to a litany of questions, answers them to the best of her ability and strives to think progressively. They have your child's best interest and quality of life in mind and aim to care for him holistically. And, of great import, good docs feel and demonstrate genuine compassion and concern for you and your child.

In short, good docs, you rock.

The Three Stooges