SUDEP

Ever heard of SUDEP? It stands for Sudden Unexplained Death in Epilepsy. It is similar to SIDS in that it is unclear as to the actual cause of death.

For a person like Calvin who has poorly controlled seizures, especially grand mal seizures, the risk of SUDEP is one in 100 over one year. Other risk factors for Calvin include his nocturnal seizures, his use of more than one anticonvulsant medication, his developmental delays and his onset of epilepsy at a young age.

SUDEP is not well understood, although current research indicates it may be related to heart rhythm problems and/or respiratory problems during a seizure. So although we listen to a baby monitor at night in an effort to hear Calvin's grand mal seizures it is possible we may not detect a problem related to SUDEP. Regrettably, the fact that Calvin's seizure medicine can cause respiratory suppression is an additional risk.

Knowing this about my son's condition has made me acutely aware of his mortality. I still feel like a new mother who repeatedly checks in on her infant to see if he is breathing, which I do every night, several times. And though I dread Calvin being suddenly whisked away from me, in turn I very consciously relish each minute that we have together. I lavish him with caresses, tickles, hugs and kisses. Mornings we linger in bed and he puts his little arms around my neck, pulls me close and squeals with delight. These tender moments are pure sublime and allow me, if just for a time, to forget the rest.

And just so you know, this ain't no April Fool's Day joke, but I sure wish it was.

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

photo by Michael Kolster

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

friday faves - bitches

In June of 2010 Michael, Calvin and I took our first trip since Calvin's epilepsy diagnosis—and constant, worrisome struggle with seizures—four years earlier. We hopped on a plane to visit Calvin’s grandparents in Florida. They live in a beautiful, quiet neighborhood with huge arching live oaks dripping with gauzy swags of Spanish moss and casting large cool shadows over the homes.

A few miles away live our two young nephews who, one muggy afternoon, came to visit us with their parents. I took Calvin for a walk in the stroller, accompanied by my sister-in-law and her boys, then age ten and twelve, both of whom have autism. We brought Abigail along on a leash, their grandparent’s miniature Dachshund whom the boys have grown to trust and love. Other dogs, however, terrify the boys, at least until they’ve had a chance to warm up to them.

A block or two into our walk past a string of somber, earthen colored homes, and as we rounded an easy bend in the road, we spotted a mother with her two little kids and their old, fat, female Dachshund. The hound was off leash while they were loading up their car and she excitedly waddled toward us to say hello. My nephews, fearing a strange yapping dog with long yellow teeth quickly closing in on them, went berserk, screaming in sheer panic.

Understanding the dog’s innocent desire to greet us I knelt down to pet it and kept it a safe distance from the boys who were cowering behind me. The owner approached narrowing her eyes as if we were aliens from another planet. She looked angry. To cut the atmosphere I said “hello” but she remained silent and cross. “How are you today?” I continued. Still no answer. As she abruptly whisked the dog from my gentle grasp I explained, “the boys are afraid of dogs, it’s okay.” Frowning, she continued to give me the stink-eye so I wished her farewell and sourly told her to have a nice day, clenching my teeth to bar the word “bitch” from escaping. I couldn't understand her vexation with a couple of unassuming mothers and our three young, extraordinary boys.

Our spirits ruined, we turned around to saunter home. While raving about the injustice that had just occurred, and minding our own business, I fairly glimpsed a pair of tanned elbows propped against a short bank of mailboxes, their matching rusty mouths chattering away. The two hens gawked at us as we passed.
 

The blond one shouted out to me, “That dog is friendly, ya know.” 

“That’s fine,” I replied in a flat tone, “but the boys are afraid.”
 

The other chick scoffed with an ugly snort, as if laying an egg, which provoked me to boom “so what business is it of yours anyway?” I finished off with a sardonic remark about their warm and welcoming neighborly spirit.

The incident left me steaming. In the cool of the air-conditioned house I became a block of dry ice and it took me a couple of hours and a glass of red wine to sufficiently melt. I simply couldn’t believe all of the ignorant bitches that were off leash that day. At least I didn't have to deal with their daily doo doo, because that stuff sure stinks.

photo by Michael Kolster

Originally published 3.29.2011.

birthday bash blues

Everything changed the moment we found out that there was something terribly wrong with our unborn child’s brain. At that point we decided we wanted to find out everything about him so we learned that he was a boy and we named him Calvin, the only name we ever truly loved.

Two good friends, wives of Michael’s colleagues at the college, were due to have their babies within weeks of Calvin’s original due date. I dreamed that the three boys would all go to the college day care, have the same friends and grow up together as neighbors. Instead, complications developed and Calvin was born six weeks early with little to no fanfare amidst much worry and uncertainty.

Our friends’ sons were born a month and a half later in our local hospital. Calvin and I had been boarding in that very labor and delivery ward for several weeks while he perfected nursing. One boy was born just down the hall from our room and the other in the room next door. We all went home with our infant sons within days of each other.

Months passed but Calvin never entered the daycare with the two boys, nor did he become their friend, nor any child’s friend for that matter.

I remember what must have been their second birthday party. Several gleeful children from the college daycare were there with their parents. Shiny Mylar balloons floated aimlessly around the room. The table was adorned with pretty cupcakes and colorful sippy-cups filled with juice. Cute gift bags stuffed with sundries and toys were strewn onto the floor and, excitedly, the children rummaged through the goodies. In my arms, and while I stood off to the side, Calvin cried and cried. The other children were scampering around the room in cone-shaped hats and blowing out candles, some eating their cake with forks. My child couldn’t even sit up by himself in a chair, couldn’t crawl, couldn’t hold a fork and didn’t seem to be aware of the things going on around him, though maybe his crying was in protest of the unfamiliar scene. In any case, there was no way of knowing, but he simply couldn’t deal, and as a result, neither could I. I wanted to dissolve into the wallpaper or hide behind the plants. Instead, I retreated upstairs so as not to cause a ruckus and in an effort to calm Calvin. Upstairs, I could hear the animated shrieks and happy commotion below. I hoped that the hubbub was loud enough so that the guests couldn’t hear my sobs.

A few moments later my friend, the hostess, found me and embraced me as I disintegrated. She didn’t let go until I did. I knew she could have no idea of the torment I was feeling but I could see the genuine concern and worry in her face, which told me she might have known, to some extent, why. She helped us pack our things and quietly escorted us out, leaving the merrymaking behind.

To this day my boy Calvin is oblivious to the meaning or tradition of birthdays. Before he was on rigid dietary therapy for epilepsy we'd make him a cupcake, stick candles in it and stand by for damage control. Now—the diets having failed to control his seizures—he can eat sweets again so this year, on his eighth birthday he had his first taste of a bona fide birthday cake. He still tried to grab the candles. And though I always appreciate the occasional invitation, I usually take a pass on most birthday parties, but perhaps someday that will change.

Version originally published 12.06.2010.

February 2006

eeg

When I walked into the small, sterile closet-like room I had a bad feeling it was going to be a rough hour-and-a-half. I was right.

The setup for an EEG (electroencephalogram) is never easy. It’s a painstaking process, uncomfortable, at times hurtful, irritating and perhaps even scary for a five-year-old kid who doesn’t understand what is happening to him.

The first order of business is to part Calvin’s hair into sections, rubber-banding it if his locks are too long, then precisely measuring distances on his scalp. Twenty-eight sites are marked with a grease pencil, abrasively if the technician doesn’t wet the tip to soften the hard waxy lead. This time the tech was a beefy woman who embodied the stereotypical image of a burly Swedish masseuse. For the purposes of this blog I’ll call her Helga. Helga came complete with a large bosom, an ample middle and a stern expression, thin hair pinched back tightly into a bun. Her thick ankles sunk into squishy white orthopedic shoes that wheezed under each heavy step. Helga strong-armed Calvin’s head with Popeye forearms, pulling him into her heaving breast to restrain him while she marked. He had no recourse but to comply with her will.

After Calvin’s scalp was marked with the red crosshairs, one by one Helga filled tiny copper cups—leads—with conducting paste. She set them carefully at each site, covered them with a small piece of square gauze, painted it with collodion adhesive and dried each with a frigid hissing stream of compressed air. Somewhere in the process, either in the gluing or the drying, ether was employed filling the dismal florescent room with a sickening odor. Helga wrestled with Calvin for over an hour as he whined and cried and struggled to break free from her grasp. Though the underdog, weighing in at just over thirty pounds, he was a formidable opponent and I found myself rooting for my boy at every round.

When all the leads were secured Helga bundled them together into a long ponytail and wrapped the rope of colored wires with a tube of stretchy, white netting. The finishing touch was crowning him with a large, white turban. Like a mummy, yards of gauze were wrapped snugly around his head to protect the leads from being yanked off. The cotton helmet came complete with chinstrap and holes cut out for his ears. Calvin looked like he’d been wounded in action or perhaps had just come out of neurosurgery. Regarding him made me sad and I wondered, dreadfully, if his little brain would ever have to go under the knife.

For the next three days Calvin remained in a hospital room fettered to the wall with a mere fifteen feet of leeway. His bed was positioned under a camera fixed in the middle of the ceiling for purposes of recording any seizure activity. I stayed by his side, made his special meals, fed him and slept with him. Calvin’s neurologist instructed me to push the red button on the recorder any time I saw suspicious behavior that could be construed as a seizure.

During this particular EEG no seizures were captured, which was both a relief and a frustration. Without that information it's impossible to determine where in Calvin’s brain his seizures might be originating and therefore whether or not he is a candidate for neurosurgery.

Though Calvin has been having fewer tonic-clonic (grand mal) seizures of late, we have begun to see some behavior that resembles absence seizures (petit mal) though we can't be sure. As a result, Calvin will be facing yet another EEG in the coming weeks. I just hope that Helga is on a long holiday visiting her motherland.

Please share this story to help bring us one step closer to a cure for epilepsy.

photo by Michael Kolster

to love

To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget.

—Arundhati Roy

Summer 2006

as long as it's healthy

I’ve often heard pregnant women say things like, “As long as it’s healthy,” or, “As long as it’s got ten fingers and ten toes.” I believe they're referring to their indifference about the child’s sex, but hearing their comments always made me think further ... and what if it’s not healthy? Well, mine wasn’t—isn’t.

I don’t often speak about the fact that one of Calvin’s many diagnoses is PDDNOS: Pervasive Developmental Disorder Not Otherwise Specified, which resides somewhere on the autism spectrum. As far as I understand it Calvin has several autistic traits, though not numerous enough to be labeled with full-blown autism.

Perhaps the reason I haven’t focused on this aspect of his condition is because his intractable epilepsy eclipses all of his other disorders, conditions and deficits. His epilepsy overshadows the fact that he is legally blind times five (his vision without glasses is 20/1000.) His seizures, and the drugs he must take for them, trump his gross developmental delays—in fact exacerbate them. His epilepsy dominates my thoughts far above any relentless reminders of his poor muscle tone, his lack of depth perception, his hypothyroidism, his slow gastric emptying, his wordlessness, his poor coordination, or the fact that he barely (if even) performs at the level of a budding toddler though he is eight years old. I worry about his silent death in the middle of the night like a new mother looks in on her infant to ensure he is still breathing.

Before Calvin had seizures we’d been crushed—wrecked—by a blindingly swift, unmerciful chain of events beginning with one horrific 32-week sonogram. That sonogram lead weeks later to an emergency cesarean and a two-month stint in the hospital trying to get Calvin to nurse or bottle-feed. After that we endured years of seemingly ceaseless, colicky shrieking, a miserable succession of missed milestones and a deeply embedded fear of what appeared to be a bleak future for Calvin and for our family.

And then it happened—like a jagged piece of black sky falling on top of us—Calvin had his first seizure. A second one followed six weeks later, then a string of successive ones lead to his diagnosis six years ago: EPILEPSY. Now my kid has a seizure disorder, I thought, and I simply tossed it—as if it were benign—on top of the existing mountain of worries, scrawled it down at the bottom of the long, crumpled list of his disabilities, pitched it in with a million disappointments, a thousand shattered dreams and as many smothered hopes.

But I quickly learned that this epilepsy thing was somehow different than all the rest of Calvin’s disabilities. It chewed them up and spit them out like some insatiable monster laying waste to everything in its path. It has all but erased—with a caustic, scouring veil—nearly every trace of normalcy, any confident strokes of hope, any residual film of a happy-go-lucky existence we’d been able to eek out of life since Calvin’s birth.

Seizure after seizure after seizure punches my little boy’s brain; drug after drug after drug sends him into vertiginous tailspins and drowns him in murky stupors. And as the weeks and months pass his developmental gap widens like an infinite canyon leaving no possibility of bridging the divide, no going back, no catching up, no do-overs. He remains in a sorry developmental limbo somewhere between infant and toddler.

Calvin: Legally blind; lacking significant white matter; ocular and cerebral visual impairments; PDDNOS; physically and cognitively retarded; Cerebral Palsy; non-verbal; disabled; incontinent; completely dependent. None of these descriptors compare to the misery that is epilepsy, which—along with its heinous treatments—makes all of these other conditions so much worse. But hey, at least he’s got ten fingers and ten toes.

To all of my readers, please share this post in honor of International Epilepsy Awareness Day. You alone can make a huge difference. We do the hard work. You just click a button.

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

June 2005