Tony: An Internist with Epilepsy

 

In September 1984, Tony was a pre-medical student anxiously awaiting the day he would begin medical school at Georgetown University.  While driving along a congested I-95 along the East Coast, the car immediately ahead swerved and crashed into the median while four lanes of traffic eked onward.  Tony, already equipped with the “helper” mindset that he would hone in medical school, stopped his car and ran to help.  The woman in the driver’s seat of the damaged car was suffering from a generalized tonic-clonic, or grand mal, seizure.

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Tony did his best to ensure the driver’s safety while he waited for emergency personnel to arrive.  Although he didn’t know it at the time, Tony’s first patient was suffering from the same illness that would plague him many years later.

Tony’s life preceding and immediately after his first brush with epilepsy on Interstate 95 was relatively worry-free and picture-perfect.  He grew up in the suburbs of Washington D.C. and was an avid tennis player, skier, and straight-A student.  He attended an esteemed private high school and was quickly admitted to an Ivy League college to continue his education.  While in medical school at Georgetown, he met his wife. Together they moved to Michigan to complete their residency training.

Immediately after completing residency, Tony and his wife found jobs in their respective fields and settled into life in the upper Midwest.  Over the ensuing years, they welcomed three beautiful girls to their family.  Tony and his family remained active and carefree until early in the morning on a winter day in November 2006. Although he does not remember all of the details, Tony recalls waking in the middle of the night with his wife hovering over him and asking him repeatedly if he was OK.  There were also two policemen and paramedics in the room, along with a neighbor sitting next to his bed and watching with concern.

Although Tony’s confusion was profound after his first generalized seizure, by the time he was transferred into the ambulance he had reassumed the physician role and gave advice to the emergency personnel.  The ensuing hospitalization and diagnostic testing led to Tony’s diagnosis of “idiopathic epilepsy” and he began to take the antiepileptic drug Dilantin.

Tony dutifully took his medication for the following year and his seizures disappeared as quickly as they came.  When the medication was weaned one year later, Tony hoped that his experience with epilepsy was a thing of the past.  However, slowly but certainly, smaller, partial seizures marched back into Tony’s life.  He had one in front of a patient, another one month later, and soon he was waking monthly in the middle of the night in the midst of a seizure.

As epilepsy reestablished itself in Tony’s life, further testing revealed a small area of atrophy, or injury, to his left anterior temporal lobe.  Tony and his doctors estimated that the injury most likely occurred years previously when his brain bounced like a ping-pong ball inside his skull after a skiing accident or trauma playing soccer.  Once the atrophic area was identified as a source for Tony’s seizures, he began the arduous process of trying to find a way to stop them.

Tony is currently undergoing evaluation to see if he is a candidate for epilepsy surgery.  He is taking two antiepileptic medications but can list the series of medications that he has tried and failed as if he were reciting a grocery list.

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“Carbamazepine didn’t work and caused horrible constipation,” he said.  “I tried oxcarbamazepine for a few days, and felt like I was stoned without the fun.  Zonisamide didn’t work and caused numbness and tingling in my hands and my feet.”

Tony states that he is currently tolerating phenytoin and levetiracetam relatively well although is emotions are more raw than ever before.  “I don’t know if that’s a medication side effect or epilepsy itself,” he mused.  “Recently my daughters saw me cry for the first time in twenty years.” Tony notes that since his seizures have escalated, his grown daughters have visited more, been in contact more, and are acting increasingly protective of their father. Tony’s wife watches him diligently and protectively.  Moments of silence and contemplation or repetitive movements like scratching his nose now warrant questions from his loved ones about a possible seizure.

Through his experiences with seizures, hospitalizations, testing and medications, Tony finds what’s most frustrating about his epilepsy is how it has changed his perspective of himself.

“My disease conflicts with my inherent personality.  Epilepsy has an incredible ability to change how I feel about myself.”

Throughout his career, Tony has enjoyed tremendous success as a physician.  He has been promoted as a physician leader in his health care system.  He repeatedly achieves the highest quality metrics in the care of his patients.  Despite this, his epilepsy undermines his success and makes him fearful for the future.

“The pride in my profession is the brain and our mental ability. Epilepsy is all about how we can hurt our brains. Being a physician with seizures is kind of like telling a football player you can’t bench press anymore.  How do you teach that person who always been the caregiver and first in line to help suddenly say ‘I need help, I need a hug?’ It’s so hard to say that.”

Despite his setbacks and frustrations, Tony has learned to ask for help and accept his limitations.  He’s recently made the decision to decrease his clinic hours in order to reduce his stress levels.  A former marathoner and triathlete, Tony has also backed off on his training and endurance exercise in the past year.  While he’s made these changes reluctantly, Tony is willing to do whatever it takes.  Like so many of us living with epilepsy, he hopes to once again live without the constant worry of when the next seizure will occur.

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Raising Awareness However I Can

Yesterday I was honored to be a guest on the Joy Cardin Show (listen to the broadcast here) on Wisconsin Public Radio to discuss living with epilepsy and my memoir, The Sacred Disease.  I was surprised by how many people called in to share their experiences with seizures, their hopes for the future, and the subtle ways that epilepsy changed their lives.  I walked away from the broadcast both excited to have participated in another forum to raise awareness and saddened that there are so many people who are touched by seizures in many different ways.

The following is a poem I wrote in effort to describe what it’s like for me to live with epilepsy.  I’m sure those of you who are touched by seizures can relate.  I cope with my uncertainty by writing and speaking out as much as I can.  What helps you?  Please share in the comments below.

Living with epilepsy means that I know the distinctive scent of EEG glue as well as I know the scent of my children.

Living with epilepsy means that I’ve learned how to fall asleep in MRI machines, wait patiently in doctors’ offices, and perform neurological tests without prompting.

Living with epilepsy means that I must not be the “Epileptic Patient” but rather “the patient with epilepsy.” I cannot let the seizures own me.

Living with epilepsy means that even some of my most significant days have been accompanied by seizures: the day I delivered my son, my tenth anniversary, Christmas Day, Thanksgiving.

Living with epilepsy means that when the familiar sensations of a partial seizure appear, I find myself searching for a place to sit away from view in case the simple seizure leads to something more.

Living with epilepsy means hiding my illness under a well-designed shroud, afraid that if others know that I have seizures they will lose their faith and trust in me.

Living with epilepsy means I examine my tongue each morning in the mirror to look for the characteristic bite that’s my sign of a nocturnal seizure.

Living with epilepsy means learning to ignore the staggering fatigue that comes with each new medication trial and medication adjustment.

Living with epilepsy means that I can list almost every anti-seizure medication and its associated side effect profile. I have tried them all.

Living with epilepsy means that I treasure the mundane and hold these things as close as possible, for fear of losing them: driver’s license, health insurance, life insurance.

Living with epilepsy means that I will consent to tests that turn off part of my brain, remain tethered to a wall with an extension cord for up to a week, and consent for removal of my entire temporal lobe in hopes for a cure that still eludes me.

Living with epilepsy means that I have created a handful of euphemisms to describe a seizure: head problem, not right, episode, incident.

Living with epilepsy means I feel compelled to join others like me and look down the long, dark road that I pray may ultimately lead to a cure.

Happy Epilepsy Awareness Month!

Happy Epilepsy Awareness Month!  I’m happy to announce that my memoir, The Sacred Disease, will be published on 11/16/15 and hopefully help to raise awareness about epilepsy during this important time.  The electronic version of The Sacred Disease is now available for pre-order on Amazon and the print version will be available for pre-order later this week.  If you’d like to contribute to a fantastic organization (100% of author royalties from the sale of my book will be donated to CURE) or learn more about epilepsy, please consider visiting the link below.

The following is an excerpt from The Sacred Disease when I was pregnant with my first son. . . 

DURING MY SENIOR resident rotation in the Neonatal Intensive Care Unit (NICU), my job was to attend all high-risk deliveries and lead the team of pediatric residents during newborn resuscitations. Most of the time, this job was simple and rewarding. We scrambled into delivery rooms like a team of blue-clad superheroes and gathered medical supplies for every contingency like a well-honed pit crew. After we prepped for the imminent delivery, we often had a few moments to settle back to our appointed spots in the corner of the delivery room and wait.

It was a privilege to witness the shocked look on a baby’s face as she opened her eyes to meet the world. During our evaluation and resuscitation, I loved watching the baby respond to the sensations of touch, sound, and sight. I relished the sight of translucent skin transforming from blue to pink and the sound of each new cry that welcomed the ambient air and swept the fluid out of a newborn’s lungs. I loved the new fathers, reduced to a puddle of tender surprise, who sidled up to the resuscitation table, peered over my shoulder, and watched, mesmerized by life’s first moments. Each time I handed over a dry and bundled baby to speechless parents, I loved to say, “He’s perfect!” while I surreptitiously patted my belly and wished for the same scene to play out in my life.

Unfortunately, not every delivery was picture-perfect. Most of the time, we knew if the baby had a birth defect or major medical problem before the time of delivery, thanks to the accuracy of prenatal ultrasounds. Still, there were a few surprises.

I was working one night when we were called to an emergent Cesarean section of a baby who had an unexpectedly trapped hand poking out of the cushioned confines of her mother’s uterus. Somehow, through twists and contortions in the womb, the baby’s arm became stuck over her head. During the initial phase of labor, her mother delivered the baby’s hand but was unable to deliver the rest of the baby.

I jogged down the hall with the pediatric team, following the gurney that carried the laboring mother. A group of concerned obstetricians swarmed around her. We hurried to scrub our hands and fingernails and donned our surgical masks, hats, and booties before we fanned out to our respective positions in the operating room. I stood sideways next to the infant warmer; my pregnant belly interfered with my ability to fit easily in tight spaces. I wondered what to expect while I watched the obstetric team make a quick incision to free the baby.

Moments later, the pediatric intern swiftly placed the baby on the warmer and we began our assessment and resuscitation. I reflexively dried and stimulated the baby and my anxiety decreased when I noted that she was breathing and crying spontaneously with a vigorous heart rate. Three of her four limbs flexed and extended as expected, but the fourth, the right arm, lay limply at her side like an azure balloon.

I touched and lifted her arm with hesitation. Her fingers looked like five blue sausages attached to a ballooned arm. Her entire arm jiggled like electric-blue Jell-O when I gently laid it back on the table. Soon I sensed the presence of the new father over my left shoulder. Instead of pronouncing the baby perfect and healthy, I explained that we would have the pediatric orthopedic team assess the baby’s hand and arms promptly.

Tears welled in the father’s eyes. Over the cacophony of the noisy delivery room, I gently asked him what they planned to name the baby.

“Elizabeth,” he uttered through tears. “Just look at her,” he continued. “Her eyes are exactly like her mother’s! She has a dimple on her chin like me! And look at that thick head of hair! She’s going to be a beauty.”

I nodded and relaxed, ashamed that I’d thought the baby’s deformed arm and hand would be all a new father would see. Instead, he saw beyond her obvious imperfections and focused on the beauty elsewhere. I wished for a moment that we all could be as authentic and true as a new, proud parent. Whether there was a discolored, swollen limb hanging without purpose or rogue electrical currents coursing through a brain, there was beauty in everyone.

Even this baby.

Even me.

* * *

As the weeks passed leading up to the delivery of our baby, I felt as if my life were mimicking an epileptic seizure. Time and again, I whipped full-force from one role to another. I jumped from physician to patient to expectant mother in a manner similar to the involuntary forceful movements of my limbs when I experienced a seizure. When I collapsed into bed each evening, my persistent dull headache and general exhaustion was reminiscent of the familiar post-seizure lethargy that marked many of my days. The obstinate ambiguity of what to expect for the little boy growing inside mirrored the uncertainty over which days would bring a new epileptic seizure. I fought back fear of how seizures affected our baby and tried to ignore the nagging truth that although I diligently followed all the rules of pregnancy and avoided alcohol, caffeine (mostly), the cat litter and soft cheese, our baby was at markedly increased risk of a birth defect or injury. I felt convulsed and fragile, tacking between invisible but tangible boundaries.

And yet, reveling in my dreams and excitement for motherhood, I was charged with expectation and anticipation. No matter which role I played – doctor, patient, wife or mother – I understood that unpredictability was as important and necessary to life as breath. I acknowledged the unsettled and unknown as things to discover rather than fear. A new and strengthening inner peace chased away my demons.

After years of fighting, I accepted that epilepsy is beyond my control. Patient outcomes are to some degree beyond my control. Our baby’s future was unpredictable but full of promise. Whatever I don’t know is OK. My life is OK. I embraced the uncertainty and relished the surprises that came with each day.

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Book Excerpt: Tragic Perspective

During the same time I prepared for epilepsy surgery, I worked as a pediatric resident at the University of Wisconsin.  Although the pressures of residency were challenging while I dealt with my own illness, the tragic perspective that I gained while caring for hospitalized children kept me focused and centered.  The following is an excerpt from The Sacred Disease recounting one of my most memorable nights in the PICU.

When pediatric residents were assigned to be on call in the Pediatric Intensive Care Unit (PICU), we stayed overnight in a small, cramped call room in the hospital and spent many sleepless hours standing over the beds of the smallest, most fragile patients in the Children’s Hospital. I was on call one night shortly before my scheduled inpatient stay for EEG monitoring.

Soon after I arrived to report for my shift, I was called into young Makayla’s room.

Makayla was a four-year-old with symmetric braids of thick black hair and glistening dimples that marked the middle of her cavernous cheeks. She was diagnosed with a pediatric tumor of the eye called retinoblastoma two years previously, shortly after her father passed away from the same disease. Makayla’s initial round of surgery and chemotherapy was successful, even though one of her bright, mahogany eyes was removed to rid her body of the tumor. Several months before her admission to the PICU, Makayla began complaining of pain in her hip and neck. A CT scan confirmed metastasis of her original tumor to several areas throughout her body.

When I entered Makayla’s hospital room, she was curled tightly in her mother’s lap. Her mother shielded her protectively with her long arms and strong shoulders. Though she cradled her baby in a loving embrace, a mother’s love wasn’t enough to reverse the slow decline in Makayla’s heart rate and shallow breathing. Makayla’s cancer had advanced inexorably enough that she was losing her grasp on life. A nurse was present to administer medications to ease her passage into another world. It would be my job to pronounce her dead.

Makayla’s mother wept quietly as she held her baby and monitored the florescent green line that recorded her heart rate on a monitor nearby. I stood discretely in the corner and tried to blend in with the wallpaper, feeling like I was eavesdropping on an intensely personal moment. A hospice nurse held Makayla’s mother’s hand. Her gentle sobs became louder each time the child’s fragile breathing slowed. Makayla’s bright fingernails, polished a fire engine red, seemed out of place in the somber room.

We stood that way for what seemed like forever. At last, Makayla took a final sigh to announce that she had fought long enough. The bouncing green line turned flat, and the child’s mother wailed and cradled her daughter close to her cheek and cried, “My baby my baby my baby.” I made a note in Makayla’s chart. Time of death: 12:03 A.M. Death was stronger than a pristine child with bright red fingernails and an insatiable cancer.

The familiar vibration of the pager on my belt abruptly pulled me from my thoughts. The story ended in Makayla’s room, but down the hall, the Med Flight team wheeled in another patient in need of acute care. I jogged down the curved hallway and found the attending physician talking quickly to the assembled group at the same time he used an inflatable bag and mask to breathe for an unconscious patient.

“Sixteen-year-old female who ran into a tree while skiing in a race approximately two hours ago. The victim was wearing a helmet but the helmet was crushed during headfirst impact with the tree. The patient was found unconscious and unresponsive on the hill and no longer breathing independently. She was intubated immediately and flown here.”

I studied the patient’s condition while I listened.

“In-flight management included ventilation and fluid resuscitation. So far, we haven’t been able to get any purposeful responses with stimulation. She has an open head wound with visible extruding white matter. Brain swelling and cerebellar herniation is a significant concern.”

As soon as the gurney stopped, a swarm of doctors and nurses flocked to the patient. “Let’s move her over.” Dr. Brady, the attending PICU physician, gestured to the larger bed in the hospital room.

“On my count. 1 – 2 – 3!”

We slid the patient as gingerly as possible to the bed that would become her home for the next three weeks. I inspected the devastated teenager lying before me as the energy and chaos in the room calmed.

Sarah was sixteen but she didn’t look a day over twelve, even when shroud with a cluster of medical devices, splints, and dried blood. A turban of bloody gauze clung to her head, and her neck and body were strapped to a rigid board to ensure stability of her spine. Sarah’s eyes were small slits of eyelashes hidden in a sea of swelling and bruises that had previously been her youthful face. There were several untouched locks of caramel colored hair that escaped and flowed down to her shoulders just outside the rigid confines of the cervical collar and head dressing. Looped purple pen strokes marked an unknown phone number on her hand, a remnant of the carefree teenage existence that was crushed to pieces along with her skull against that tree.

We hooked Sarah to the monitors and ventilator in the ICU and inspected her wounds while we waited for the neurosurgery team. She would need emergency surgery to stabilize the swelling in her brain and decompress her skull fracture. We watched her vital signs with trepidation.

Moments later, I tore my eyes away from the monitors around Sarah’s bed and turned to see a cluster of neurosurgeons jogging down the narrow path to the ICU. Their white coats floated behind them as if they were galloping on clouds as they pushed forward to the girl’s room. My shoulders relaxed and my breathing eased when the neurosurgery team wheeled Sarah down the hall to the operating room. Makayla would not live to see adulthood, but Sarah’s future remained a possibility. For this, at least, I was hopeful.

In one night, I met the Unimaginable, Unavoidable, and the Unexpected. Two beautiful girls’ lives altered or ceased while most of Madison slept. Weeping, I walked the lakeshore path to my car. I cried in frustration at how helpless I could be even when cast in the “helper” role. I also was ashamed of my obsession with my own illness. Seizures were frustrating and unpredictable, but I still woke up each morning to welcome the promise of a new day. Anticipation and expectation were still mine to enjoy. Makayla and Sarah now embodied only golden memories or fiery regrets of moments gone tragically awry. I dried my tears and lifted my chin to the sun as I filled my lungs with the cool, early spring air. It was a new day, and I was acutely grateful to be part of the world.

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Book Excerpt! From The Sacred Disease: A Memoir of Life with Epilepsy

For those of you who follow my blog, you may have noticed that my blog entries have dropped to, well, zero recently.  I could tell you that I’ve been busy or that life in general has been overwhelming but the real truth is much more exciting.  I have been writing a book about my journey with epilepsy.  I hope that by telling my story, others will feel more comfortable talking about seizures.  My book is entitled The Sacred Disease: A Memoir of Life with Epilepsy.  It will be published by Booktrope in late summer or fall 2015.  I plan to donate 100% of any profit I make from the book to CURE (Citizen’s United for Research in Epilepsy.)

Hopefully, you’ll want to buy the book just to donate to CURE.  In case I need to entice you, I will be releasing small excerpts from the book on this blog up until time of publication.  The following is the story of the night before my second son was born…

I was scheduled for induction of the delivery of our second son exactly on his due date. My second pregnancy was a bumpy ride of escalating medication doses, increasing seizure frequency, and several unplanned trips to the hospital. My obstetrician advocated for induction, hoping to avoid further complications. It was time to move on.

The evening before William’s scheduled birth was a cool, fall night. The wind blew strong gusts that sent the multicolored leaves galloping across our concrete driveway to accumulate in a pile in a ditch beyond. Inside, our house was warm, alive and festive. One of my husband’s high school friends was in town for the night and we invited him and his spouse over for an impromptu dinner.

When I slipped out to grab the mail, I peered into the windows filled with light and admired my smiling husband, Andrew, and our gregarious two year old. Alex sat on his dad’s lap and chatted animatedly with our visitors. The heartwarming scene inside the house energized me momentarily, but I knew I wasn’t myself.

I pushed myself to the limit that week. My globe-like belly made it almost impossible to sleep and I was working long hours in effort to tie things up at work before maternity leave. I knew that seizures would find me soon.

After our friends left, my husband and I cleaned the kitchen and packed our bags for the hospital. I was thrilled that it was almost – finally! – time to meet William. I took the chance to appreciate the beautiful evening for a last time when I took a bag of garbage to the end of the driveway. Our toddler was in bed, our company was gone, and everything was set for our new baby’s arrival.

I walked and listened to the familiar music of the leaves and the trees when an aura swiftly materialized. I told you so, Epilepsy seemed to taunt through the pulsing heat and confusion, you can’t deny that I am a part of you.

I saw Andrew at the other end of the driveway and walked to him slowly through the developing seizure. Later, Andrew told me that I walked to him with a blank stare and stood quietly before I abruptly became rigid. My unconscious body slumped into his arms and he carefully lowered me to the ground just as the jarring muscle contractions of the seizure began.

Andrew dragged my pregnant, convulsing body into the safety of our garage with effort. He placed my bobbing head on a pillow of recycled newspapers before he ran into the house to call 9-1-1.

* * *

A stranger’s face hovered over me as the fog cleared.

I was lying on the cold, hard floor of our garage surrounded by unfamiliar lights and sounds. Off in the distance somewhere, someone was calling my name.

“Kristin? Kristin? Can you open your eyes for me?”

I managed a one-eyed glance at the concerned faces around using all the strength I could muster. Just beyond the swell of my abdomen, I saw the furrowed brow of Andrew, who was leaning down to rearrange a blanket draped over my legs.

Where was I?

The unfamiliar man with a soft voice and a warm hand on my wrist introduced himself. “Kristin, my name is Dan. I’m from the Middleton EMS. Your husband called us tonight because you had a grand mal seizure that lasted about 6 minutes. We found you here on the floor of your garage when we arrived, and you’re starting to wake up now. We’re going to get you on to this gurney and head into the hospital to check on you and your baby.”

Baby? Confusion blurred to panic when I remembered my scheduled induction the following day. Tears welled, and strong hands lifted my wayward body off the cold floor and onto a cool bed. I was rolled into the back of the ambulance where the air was warmer and the lights were brighter. Moments later, the familiar silhouette of my brother appeared at the ambulance’s open back door. My brother’s face flashed red and white with the blinking emergency lights. He nodded his hello and reassurance before he went into the house to keep our son company. Andrew’s lips brushed my cheek, the bed was secured, and the truck rolled away.

William Kristofer Seaborg was born the following day, at 8:44 P.M., just an hour after the harvest moon dropped below a golden horizon. He was proportioned exactly the same as his older brother born twenty-seven months earlier: 8 lbs. 4 oz. and 20.5 inches long. His bald head was adorned with a thin layer of hair as fine and blond as the feathers that coat a new baby chick. His large eyes sparkled with hints of the bright blue that would remain. We were in love.

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A Mother Turns Her Experience with Epilepsy Into a Learning Opportunity For All

Over the years, I’ve discovered that that the more I write about epilepsy, the more I have the chance to meet patients and families who are working to change many of the common misconceptions about seizures.  From a group in China that is working to raise awareness about epilepsy in Hong Kong, to the father of a young girl with a rare epilepsy syndrome, the collective work that we are doing to de-stigmatize epilepsy seems to be slowly making its mark.  

A few weeks ago, I received an email from Laura Gray, a mother whose oldest son was recently diagnosed with epilepsy.  Instead of giving in to fear and frustration, Laura took the opportunity to write a feature article for a medical journal to educate others about epilepsy.  Laura was excited to share both her article and personal story here as well.  Read on as Laura shares her family’s story in her own words.

My Son: The Epileptic

Being a single parent of a 12 year old boy is never easy but when that boy has a lifelong condition like epilepsy things can be really tough. I am that mother and my son John was diagnosed with the condition when he was 8. This is our journey.

As a child

From the age of about 4 or 5 I used to notice that John would occasionally ‘space out’ for a couple of minutes. It was as though he couldn’t hear me and wasn’t aware of his surroundings. He’d stare into space and smack his lips. At the time I put it down to his age. He was a young boy with a vivid imagination and I thought he was just lost in his own little world. The rest of the time he was perfectly healthy and because I associated epilepsy with the tonic clonic seizures we see on TV, the thought that his space outs could be linked to that never crossed my mind. It wasn’t until he had his first seizure at the age of 8 that I made the link.

The first fit

The first time John had what many would describe as a ‘traditional’ epileptic fit we were at a local park. It was a hot day and John had been running around for a long time. As I sat on a bench chatting with another mother I saw him fall to the ground and as I rushed over I saw that he was jerking and convulsing on the ground. I was utterly terrified and had no idea what to do. My initial thought was that he was having some kind of heart attack but the other mother, who coincidently had a sister with epilepsy, immediately asked me if he suffered from the condition. Thankfully he came round after a few agonizing minutes and he seemed OK but we still rushed to the hospital to get him checked out.

The diagnosis

At the hospital neurological doctors asked me if all kinds of questions. Had he suffered a recent head injury? Was he on any kind of medication? Had anything like this happened before? It was only when I mentioned his occasional space outs that they seemed confident that John had epilepsy. Still, they ran blood tests and an EEG before finally confirming the diagnosis. At the time I wasn’t sure how I felt. After the shock of seeing him collapse I was overwhelmed with relief that he wasn’t dying but the prospect of having to manage a condition and those fits terrified me. When we got home I did some research and tried to explain the condition to John but at 8 years old I’m not sure how much he took in. He knew something had happened in the park and that he’d had to have tests. He seemed to understand that he’d need to take medicine daily now. But all he was interested in was getting home to play on his computer game.

Life goes on

Since the initial fit 4 years ago John has suffered 6 more tonic clonic seizures. Each time I feel the familiar rise of panic in my chest but with each fit comes a greater acceptance of the condition and more experience in handling them. I put John in a position where he can’t hurt himself, remove any dangerous objects from around him and wait for it to pass. We work together to try and identify what triggered the seizure – usually it seems to be when he becomes overtired so ensuring he gets enough rest is important. John copes admirably with his condition. He is extremely organised and responsible when it comes to taking his medication doesn’t dwell too much. Recently he asked if he could go scuba diving with a group of friends when they visited the beach. Immediately I had to remind him of the dangers of his condition. If a diver were to have an epileptic fit underwater it would almost certainly be fatal. At times when he is unable to do something I can see the gravity of his condition overwhelm him and that’s hard. But he tries to stay positive and I am extremely proud of him.

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Amparo: A Physician in Mexico with Epilepsy

Although she lives hundreds of miles away, listening to Amparo’s story was like looking in a mirror.   As a 29 year-old physician in Mexico City, Mexico, Amparo is also learning how to live with her epilepsy while balancing a family and a career.  Amparo was diagnosed with left temporal lobe epilepsy at age 19 but began having seizures years earlier, before she understood what a seizure was.

At the age of 14, shortly after Amparo started secundaria school (similar to American high school), she began having bizzare events where she suddenly lost consciousness for short periods of time.

“I would be in class and suddenly fall asleep or black out,” she remembers.  “When it was time to go to another class, my friend would wake me up and I would begin again.”  Although she had persistent and recurrent episodes throughout secundaria school, Amparo avoided giving too much thought to her sudden and repeated lapses in awareness.

After Amparo completed high school, she chose her career path and began medical school, as is standard practice for those who study medicine in Mexico.  As a 19 year-old medical student, she was required to attend classes that began at 7 each morning and continued until 3 PM each afternoon.  After a short break, classes would begin again at 4 PM and continue until 8 at night.  Amparo found the rigorous class schedule taxing on both her mind and her health.  During the second semester of medical school, Amparo’s professor asked her a question and she was unable to speak or respond.  The professor encouraged her to schedule an appointment with a neurologist for evaluation of possible seizures.

The neurologist who met with Amparo “asked a lot of questions” and helped identify an event where she sustained significant head trauma as a young child which may have been the inciting incident for her seizures.  An EEG confirmed complex partial epilepsy with secondary generalization.  Amparo was started on the anti epileptic medication levetiracetam but she did not experience any improvement in her symptoms.  In the months that followed, she tried primidone, which made her feel persistently drunk, carbamazepine, topiramate, and valproic acid.

Despite her recent diagnosis of epilepsy and frustrations with medication trials and failures, Amparo did her best to continue in medical school and perform at the level of her classmates.  She excused herself from class when she experienced a seizure but then returned to her work promptly.  She became discouraged, however, when one of her professors quietly urged Amparo to reconsider her decision to be in medical school.  “Because of your illness, you won’t be able to finish medical school and become a doctor,” her teacher warned.

Amparo confided in her perpetually supportive mother.  “Mom, they tell me I’m not able,” she complained, considering what her other career options may be.

Amparo’s mother provided the strong and unweilding voice that she needed.  “Amparo, you’re here.  You’ve already made it to medical school.  You must stay and get your degree.” Amparo also was reassured by the strong support of her younger sister, who assumed the role of eldest child when Amparo had a seizure, and her father, who worked many hours to pay for treatment of Amparo’s epilepsy.

A short time later, Amparo informed her doubting professor and other medical school faculty members that she wouldn’t leave school before her graduation.  They would learn never to question her abilities again.

Me

Despite her commitment to continuing her studies, Amparo still suffered from persistent seizures.  Eventually, she had to drop some classes in the academically rigorous fourth year.  During her 5th year of medical school (which is similar to Internship in the U.S.), Amparo was expected to work in the hospital for long hours every day.  Her teachers and mentors and spoke with her and elected to take a year off to focus on achieving seizure control.  During this time, she took the classes that she had to discontinue the previous year and tried her hardest to rest and recover.

Although Amparo fared relatively well during her year away from medical training, her seizures returned almost immediately when she returned to school.  Early in the academic year, she suffered a prolonged seizure, or status epilepticus.  In the weeks that followed, Amparo visited her neurologist and was told that epilepsy surgery her best option.  A MRI confirmed a seizure focus deep in her left temporal lobe.   During the pre-surgical testing, Amparo was warned that she may have difficulty remembering names or words to describe objects after her epilepsy surgery.

Amparo had a left temporal lobectomy in March 2009.  Even though she felt great pain as she woke up from anesthesia, she also was enormously relieved to immediately recognize her physician.  As she recovered, she worked with a neuropsychologist to help regain her speech and language capabilities.   Amparo enjoyed two years free from seizures after her surgery.  She completed medical school and began to consider what type of medicine she wished to practice.

Lobectomy

Scar over left temporal lobe after surgery

My sis and me after my surgery

Amparo and her sister after surgery




After two years of seizure-freedom, Amparo talked to her neurologist about discontinuing her anti-epileptic medications.  With his approval, she began a slow wean off her medications with excitement.  But as she weaned to half of her previous dose of medications, Amparo’s epilepsy returned.  She sustained another prolonged episode of status epilepticus and was admitted to the Intensive Care Unit in a medically-induced coma.  Amparo had another prolonged seizure in the days that followed and remained in the hospital for one month.  She reports that she walked the brink between life and death during that hospitalization.  “It was awful.”

Amparo was started back on anti epileptic medications and now suffers approximately one complex partial seizure every two or three months despite her three daily medications.  Because her partial seizures sometimes lead to generalized tonic-clonic seizures, she has sustained a variety of injuries over the years.  She has broken her finger, lacerated her eyebrow, cut her lip, and injured her elbow.  The visible and invisible scars left from injuries related to seizures have affected Amparo deeply.

“Sometimes when I look in the mirror, my reflection causes pain in my heart.  It just doesn’t seem fair.”

However, despite her trials, Amparo continues to maintain a healthy sense of perspective.  “There are always people who have it worse than I do,” she said.  “Others with epilepsy don’t have the opportunity to have the career that I have, or even the family that I enjoy.  I have a problem but I also have lots of opportunity.”

Still, Amparo states that fear of when the “next seizure” constantly haunts her.  “I count each day from a seizure.  My family watches me closely the day of a seizure but as time progresses they back off.  But I am always wondering when the next one will come.”

Amparo also acknowledges that the public perception of epilepsy in Mexico and worldwide is still significantly different than the truth.

“People with epilepsy in Mexico talk less about their disease because it’s better if others don’t know if they have it.  They think that if they don’t talk about it, they will be less affected.

“People in Mexico think that seizures occur because epileptics have some kind of venom. Patients are tied to their desks because they have epilepsy. We have to make a change here. It’s difficult, but we have to do it.

“I feel like I have the responsibility to help make epilepsy acceptable,” she said with determination. In effort to educate others about epilepsy and its associated stigma, Amparo is currently completing her Masters Degree in Bioethics. The title of her thesis is “Discrimination that Suffer Mexican Persons Who Have Epilepsy in the Field of Work.” She chose this theme because she knows what it’s like to feel discrimination, but she also wants to teach others to rise above their seizures and work toward their academic and professional goals.

“I still have problem remembering names of people I have just met and sometime of people I have known for years,” she said. “But even though I have epilepsy, I had had surgery, I have won a wonderful life full of important friends and family that help me, and I have learned that we are always capable of new things.”

Please pass it on.

Art

Artwork that Amparo created after epilepsy surgery

 

 

Family

Amparo, her sister, and parents

 

 

 

Charlie Claire

After struggling to get pregnant, Kristin and Jason were delighted to learn that they were expecting twins. Even though she was carrying a double burden of babies, Kristin sailed through her pregnancy and delivered a healthy boy, Jackson, and a healthy girl, Charlie Claire, just two weeks prior to their due date. The North family rejoiced at the addition of their two blond, cherubic babies.

The first two days of the twins’ lives went exactly as planned. Both Jackson and Charlie fed well and seemed to be adjusting to newborn life. But on the evening of her second day of life, when Charlie Claire’s father was feeding her a bottle, he wondered if her color appeared a little “off.” It was hard to tell in the dimly lit hospital room, but Jason wondered if his new daughter was the color of ominous thunder clouds instead of the expected baby pink. Before Jason and Kristin could think more, the episode was over.

The following morning, however, Charlie had another brief spell where her appearance altered. This time, Charlie was taken quickly to the nursery and was found to have low oxygen levels. Even though Jason had already left the hospital to get things ready for the twins’ expected discharge, a nurse quickly informed Kristin that her new baby had “bought herself a 48-hour stay” in the Neonatal Intensive Care Unit (NICU).

Throughout the day, Charlie Claire had many similar dusky spells. The NICU provider on duty noted that Charlie’s eyes repeatedly drifted toward the right with each spell. Eventually, Charlie’s parents heard a diagnosis that they never expected but that would become alarmingly familiar as time progressed. After monitoring Charlie for the entire day, the NICU provider ventured, “I think she’s having seizures.”

Shortly after this revelation, an EEG confirmed the presence of seizures. A subsequent MRI revealed a malformed region of Charlie’s brain. Charlie was started on the anti-epileptic medication phenobarbital and the spells stopped almost immediately. After over a week in the hospital and careful adjustment of phenobarbital to acceptable levels, Charlie Claire was sent home to join her healthy twin brother.

Things went smoothly initially after Charlie’s hospital stay and seizures began to feel like a distant memory. But when she was two months old, Charlie’s parents noted that she had brief episodes of unusual movements that seemed like muscle spasms. Charlie’s mother recorded the events and showed the video to her neurologist at a routine visit. Unconvinced the episodes were seizures, he arranged for another EEG.

Kristin vividly remembers the day that she took Charlie for her first outpatient EEG. As she sat quietly in the waiting room, she tried not to worry when the EEG technician rushed out of the room and explained that she was going to get the neurologist. Within moments of the doctor’s arrival, the EEG technician again poked her head out of the room and spoke with urgency to Kristin, “The doctor wants to talk to you.”

Charlie’s EEG revealed that she was having almost continuous seizures. She was admitted to the intensive care unit immediately and was started on a series of different antiepileptic medications. Charlie was treated with Keppra, Dilantin, Tegretol, and her phenobarbital levels were increased. Still, she continued to have seizures. Finally, one of her neurologists conceded, “we’ve done everything that we can do. Charlie will need to have brain surgery for treatment of her seizures.”

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One month later, Charlie’s seizures were characterized as infantile spasms (IS). Her diagnosis of the developmentally detrimental IS placed increased urgency on the proposed brain surgery. Still, her doctors warned that surgery was too high-risk until Charlie was six months old. Holding their struggling two-month-old in their steady arms, Kristin and Jason prepared for a long wait.

Months later, Kristin and Jason remember the staff at Virginia Commonwealth University hospital (VCU) as being welcoming, gracious in their explanations, and hopeful while speaking about Charlie’s future instead of focusing on the challenges of today. Charlie had surgery to resect the malformed area of her brain in her right temporal-parietal-occipital lobe in March 2011. Immediately after her surgery, Charlie’s infantile spasms disappeared.

photo 1 (93)

   
 But on Mother’s Day 2011, Charlie’s parents noted that she started having another type of event where she would briefly look to the right, flutter her eyelids, giggle, and then return to her normal demeanor 30 – 45 seconds later. This time, Charlie was diagnosed with the more benign simple partial seizures and started treatment with Lamictal. A repeat MRI and EEG confirmed the remaining presence of a malformed portion of her occipital lobe. Charlie had a second resective surgery in the fall of 2011 to remove the remnant of irregular brain tissue. Unfortunately, her second surgery did little to change the nature of her partial seizures.

     

Charlie will be 4 years old in October. Her parents report that by all accounts, she is a normal, active, and happy little girl. Like most young girls, she has memorized all the words and characters in the movie Frozen. She also fosters a fierce bossy streak that lends a charming “sassiness” to her demeanor. Her parents were filled with pride when they took their twins to a birthday party and another parent expressed disbelief upon hearing Charlie’s history of two brain surgeries and epilepsy. “I would never know!” the other parent effused. “She doesn’t look any different than any of the other children!”

charlieclaire beach

     
But despite outward appearances, Charlie still has her share of challenges to face as she grows. She works with a physical therapist, occupational therapist, and speech therapist five days a week to help her maintain and acquire new skills. Her depth perception and vision is affected by the visual field defect acquired through epilepsy surgery.

Charlie’s parents report that her positive outcome has been directly affected by her twin brother, who has been Charlie’s greatest teacher. “All along the way, Jackson has been present to challenge Charlie,” Kristin reports. “Anything that he is doing, she wants to be doing.” Jackson doesn’t remember the periods of time when Charlie was critically ill in the intensive care units, but he was fascinated by the hat of wires she wore during her recent inpatient stay for a continuous EEG.

photo 4 (1) IMG_8817
While raising twins always has it’s challenges, Kristin states that her experiences with Charlie Claire have taught her a lot of things about parenting.  “I’ve learned to always trust your instincts about your own child,” she said. “When Charlie started having her seizures, I thought that something was wrong and there was.

“I have also learned how to consistently go to bat for our daughter. I’m determined that Charlie will never fail due to lack of effort on our part.

“Charlie has also taught me not to get ahead of myself. Often I have worried about things such as what if she doesn’t pass the next test, what if she doesn’t do well in kindergarten. . . I have been forced to learn to enjoy Charlie today and every day.”

Kristin’s voice is hopeful as she summarizes her family’s journey with Charlie Claire so far. “We didn’t know what to expect. Everyone said, ‘we don’t have a crystal ball,’ now people at birthday party have no idea what she’s been through. We could have only dreamed that we’d make it this far.”

You can learn more about Charlie Claire’s journey on Kristin’s blog: http://www.charlieclaire.com

Please pass it on.

158

Merrily: An attorney with epilepsy

The year was 1973 in a small, rural town in northern Texas. Merrily, at the tender age of fourteen, was mourning the recent loss of her mother only months before. One summer night she joined her friends and neighbors at a local party and reveled until the early morning hours. Shortly after she returned home and tucked herself into bed before dawn, her brother found her seizing. Merrily only remembers waking up in the small community hospital.

News of Merrily’s mother’s recent death had travelled quickly through her small hometown. Merrily remembers that the hospital staff questioned her about drug and alcohol use, suspicious that such behavior had brought on the seizure. At least partly because of this, Merrily was not offered a period of observation, evaluation, or any diagnostic tests after her first generalized seizure. Instead, it was assumed that the seizure occurred secondary to a chaotic lifestyle.

Despite her community’s ill-informed fears, Merrily succeeded through high school and went on to college. Six years later, a sophomore in college, she was sitting alone at her kitchen table after work. Abruptly, Merrily found herself on the floor. She was sore with full-bodied muscle aches and confused. Later she would learn to recognize the identical sensations as those she felt as she was recovering from a grand mal seizure. Since she didn’t know how to interpret the event at the time, she moved on with her studies.

Merrily moved from college to law school, where the course work and competition required long hours of studying. While she was studying late one evening with her husband, she succumbed to another seizure and woke with emergency medical personnel standing over her. After this event, Merrily was referred to a neurologist who finally diagnosed her with epilepsy. Merrily was given a prescription for Dilantin but the side effects of Dilantin affected her ability to think clearly and caused significant fatigue. As a second year law student, she couldn’t afford to feel anything less than her best. Later, she was switched to phenobarbital, which she tolerated well but interfered with her future plans to have children.

After Merrily graduated from law school, and thought seriously about having children, she went back to her neurologist and asked to wean off her anti epileptic medications. She hadn’t had a seizure in two years, and she was feeling well. Both seizure and medication free, over the ensuing six years, Merrily delivered three perfect daughters. Fully immersed in her life as a mother and her practice as a lawyer, Merrily was sure that epilepsy was a thing of the past.

But as time passed and her daughters grew, Merrily developed episodes that she thought were panic attacks. The brief episodes were characterized by severe anxiety and foreboding that would appear for ten to fifteen seconds and then pass. Eventually, in 2012, almost thirty years after she stopped taking anti epileptic medication, Merrily had an event that changed her life yet again. She was sitting in her office over lunch, listening to a webinar and watching the slides flip on the screen. Suddenly, Merrily started to feel “funny” with abdominal discomfort and a rising heat that ascended to a tightness and pressure in her head. She struggled to read the words in front of her. She knew the clustered letters were language but she couldn’t make sense of the words. The next moment that Merrily remembers is when she woke on her office floor with trembling muscles and full body pain.

“After thirty years, epilepsy wasn’t even on my radar. Still, I knew what happened immediately.”

After her seizure in 2012, Merrily again established care with a neurologist and learned about how treatment and evaluation of epilepsy had changed in the interval thirty years. She realized that her self-diagnosed “panic attacks” were actually simple partial seizures.   Through diagnostic testing and further evaluation, Merrily was found to have a developmental venous anomaly (DVM) on the left side of her brain near the junction between the frontal and parietal lobes. Although some experts believe that Merrily’s DVM is unrelated to her seizures, others wonder if previous small areas of bleeding from her venous anomaly could have created a seizure focus.

Since Merrily’s epilepsy resurfaced in 2012, she has tried a variety of medications with various degrees of success. In many cases, the side effects of the medications were intolerable. “Zonisamide made me depressed and stupid,” she said. “Trileptal made me want to eat everything in sight, gave me daily headaches, and made me slow. Lamotrigine worked for a while but not as well as I had hoped.”  Despite multiple medication trials, Merrily continues to persevere and work successfully as a lawyer at a financial firm in Texas.

Merrily reports that one of the most bothersome symptoms that has appeared with her most recent experiences with epilepsy are her struggles with speech and language. “When my seizures started happening again, I was having speech and language issues. I didn’t know if this was occurring as an aftermath from a big seizure or secondary to a smaller seizure. I would be sitting in a meeting, trying to describe something, and then wouldn’t be able to find the right words. I could not get across complex idea and would have to use simple, inadequate language that was uncharacteristic of me. I also started to do weird things and reverse sounds of two words together. When I tried to say hot dog, it would come out as ‘dot hog.'”

She started working with a speech therapist and has gradually seen her speech improve. Despite her day-to-day reality of medications and side-effects, she has not told many people other than friends and family about her epilepsy. She found that the stigma surrounding epilepsy remains shortly after her seizure in 2012.

“After my grand mal seizure in 2012,, I wasn’t able to drive for several months. At lunch with colleagues, I shared my recent diagnosis of epilepsy and looked around the table when I was done talking. No one said a word. They didn’t know how to react.”

Eventually, someone spoke up and said, “the only thing I ever heard was to keep a seizing patient from swallowing their tongue!”

Through her journey, however, Merrily has learned many things.

“I have learned not to doubt myself,” she said. “All those years I was having small seizures, I thought I was overreacting to my symptoms when actually there was a neurologic reason for my sensory events.

“I have also learned to seek help from professionals when I need it. There are many things that go along with a diagnosis of epilepsy — trouble with memory, cognition, emotional and social issues, and considerations for the workplace that I didn’t originally understand.

“I have learned to seek information when my questions were left unanswered. I want to know if there is anything else that can be done about this other than these horrible medications. I don’t hesitate to email doctors who have done studies that I have been interested in.”

And finally, and perhaps most importantly, “I have learned to be patient with myself. This is something that I’m not always that good at, but I try.”

Merrily has also realized that the more she talks about her epilepsy to others, the more she is able to correct lingering misunderstandings amongst friends, colleagues, and family members. She, too, has come to the conclusion that the more we talk, the more we understand.

Please pass it on.

Merrily with her 90 year-old father, Thanksgiving 2012.

Merrily with her 90 year-old father, Thanksgiving 2012.

 

 

Alex and George: Living a Full Life Despite Seizures

Twin brothers Alex and George share many things.  They share their love for the martial arts.  They both have achieved the level of black belt in tae kwon do.  They also love to ski, both near their home in Wisconsin and on the significantly more challenging slopes of Colorado.

Alex and George also share their diagnoses of epilepsy.

IMG_6103

Alex and George snowshoeing in Colorado

 

 

 

The tale of Alex and George was told to me by their mother, Maureen, who talked with a combination of emotion and pride over the bluetooth phone in her car while she drove her slumbering teenage sons back from vacation in Michigan.  Every so often, a mumbled “hhhmph” of assent or “harrumph” of question emanated from the teenagers in the back of the car.

Maureen started our conversation by making sure that I knew how far her boys had come despite the challenges that they had faced with epilepsy.  “My mother socializes with a large group of women in the Michigan area and she is holding a fundraiser to raise awareness about epilepsy next week,” she said.  “One of the goals of the fundraiser is to show the important and relevant realities of the disease and how it affects the whole family.

“On the invitation to the fundraiser, my mother and I wrote:  Since their diagnoses 10 years ago, George and Alex have taken about as many medications that are available, have had a myriad of tests,  George had intracranial EEG monitoring, and George had brain surgery.

 Despite all that, they are active, funny, engaging teenagers.”

IMG_5001

Alex, Maureen, and George at Pope Farm Park in Madison, WI

Maureen’s journey with epilepsy began on a Christmas ski trip in 2003 when 5 year old twins Alex and George were sitting outside having a snack in between runs down the hill.  While sitting quietly in the afternoon sun, George started acting differently and stopped responding to external stimuli.  By the time his parents realized something was wrong, he succumbed to a generalized seizure.  The ski patrol office was right next to where George collapsed, so he was promptly put in an ambulance an taken to the local hospital, where a CT scan and all diagnostic studies were normal.  George was discharged from the hospital the next day and he returned home with his family seemingly unscathed.

But George continued to have seizures.  He established care with the Children’s Epilepsy program at Children’s Hospital of Phillidephia and was started on tegretol.   When George’s family moved to the Milwaukee area, his care was transferred to the Children’s Hospital of Wisconsin, where his neurologist recommended an evaluation for possible resection of the focus of his seizures.  George had surgery for placement of intracranial electrodes and then was monitored in the epilepsy monitoring unit at Children’s Hospital of Wisconsin.  His seizures were found to originate from the left temporoparietal region of his brain, the same portion of the brain that houses, among many other things, the circuitry needed for speech and language.

“I’m a speech pathologist,” Maureen stated.  “When Dr. Zupanc  told me where George’s seizures were coming from, it was a low point in this journey.  I knew that if they resected that region, he would never fully regain his language again.”

Instead of having a resection of a seizure focus, George had a vagus nerve stimulator (VNS) placed, which has been helpful to reduce the number of seizures.  He still has approximately one to two seizures a week, despite taking three anti-epileptic drugs.  George continues to ski in Snowmass with his family with the help of a program called Challenge Snowmass that pairs a skier with disabilities with a ski buddy.  George clips into the chair lift and uses a climbing harness while skiing to keep him safe in case he would have a seizure while skiing.  George has also achieved a black belt in tae kwon do and enjoys swimming with his family at the beach — though never without a life jacket.

When George and Alex were 7, in the midst of George’s evaluation for possible surgical treatment for his epilepsy, Alex began to complain of intermittent periods where he “couldn’t see.”   The visual complaints were determined to be focal seizures and before long, Alex had his first generalized seizure.  With both children undergoing treatment and evaluation for epilepsy, Maureen felt like she was being pushed to her limits.

Alex’s focal seizures didn’t always generalize, but they often did.  He began having about one to two seizures a week, but his seizures didn’t seem to be progressing as quickly as George’s had.  Because she was now struggling with recurrent seizures in two boys, Maureen decided to put both boys on the ketogenic diet when they were eight years old.  “I was bound not to fail for lack of compliance,” she said, “so I measured every morsel of food for one year.  The worst part of it was the daily grind and the limited repertoire of what we could eat.”

Maureen remembers Alex’s last seizure like it was yesterday.  “I took Alex to Michigan in December for a holiday music performance and he had last seizure in the lobby of the Interlochen Music School Auditorium.  After that, we were able to sit down and enjoy the performance.”  Not long after that, Alex stopped the ketogenic diet and was switched to Depakote.  Alex has been on the same dose of Depakote for the past seven years and has not had a seizure since.  His EEG his still active, but his clinical seizures have stopped.

Maureen has realized that raising two boys with epilepsy has not only changed her perspective about seizures, but molded her view of life in general.  For better or for worse, she’s gotten used to watching her sons’ seizures and supporting them through them.  “I’ve seen George have 95% of his seizures.  After the initial panic is over, I’m the one consoling everyone else.  I’ve seen it before and I’m used to it.  George had a seizure on the first day of middle school and the case manager was a wreck.  I was the one that had to calm her down.”

And having Epilepsy as an additional family member has also given Maureen and her family a chance to appreciate the simple things and celebrate the small successes.  She reflected, “It’s pretty easy to get bogged down in the worry about the future.  Every parent gets worried about their kids.  It’s 1000 times worse when you have a child with a medical problem or some sort of special needs.  But, you need to look at every day and the success of each day and see that they accumulate and trust they’ll find their way in the world.”

When I asked Maureen how she’s managed with a life of uncertainty, she replied, “You have to take every day and prepare for the worst, and hope for the best.  It’s a balance between worrying about what’s going to happen and being thankful for every good day that we have.”

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Alex at Cascade Mountain, Wisconsin

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George at the UW arboretum

Never Too Far Away

It’s been a long time since I’ve had a chance to write a blog post. Between work, family, and finding time for adequate sleep, blogging has (temporarily) gone to the wayside.  However, it’s never too long before I’m reminded of the omnipotence of epilepsy both in my life and the world around us.

Last week I accepted two new patients into my general pediatrics practice with intractable epilepsy.  The mother of one young girl with Lennox Gastaut Syndrome brought pictures taken of her daughter during infancy.  The bright-eyed toddler with an open mouthed grin in the picture acutely defied the image of the now 8-year-old non-verbal and minimally interactive young lady reclined in a wheelchair.  The same day, I met a three-year-old boy with a genetic syndrome and subsequent seizures.  I smiled as he toddled around the exam room and touched everything within reach to explore his environment.  Still, as I typed in his medication list and reviewed his history of past hospitalizations, I worried about how his recurrent prolonged seizures would affect his development.  Time can only tell how each child will endure their significant challenges.

Earlier this month, I had an article published in Epilepsia, the journal of the International League Against Epilepsy, discussing what it’s like to navigate life as both a professional and patient with epilepsy.  You can see that article here:

http://onlinelibrary.wiley.com/doi/10.1111/epi.12501/full

And later this month, I am looking forward to participating in an event sponsored by Madison Friends of CURE and Joey’s Song (see the past post about Joey here)  If you’re in the Madison area and would like to participate in a great event to raise awareness about epilepsy, please click on the link below:

http://www.joeyssong.org/madisoncure/

In the meantime, to those of you who don’t live with epilepsy or have a loved one with seizures, thank you for opening your heart and mind to understanding this incredibly common but still stigmatized disease.  And to those who intimately understand what it means to live with seizures, God bless and let’s continue to raise awareness and find a cure.

DSC_0576(This is my daughter’s way to learn about the human body!)

Guest Post: Savanna’s Story

 

The following post was written by Ken Lininger, father of Savanna and author of Savanna Lininger’s Journey with Epilepsy blog.

 

Wonderment and Joy!

Twins, Savanna on the left.  So precious.

I knew big news was forthcoming when Rebecca visited my office unannounced.  Yes, we both wanted to have more children.  But with Tristan a month away from turning 3 and Brandon 6 months old, we were just starting to find our way again.  There before me was my beautiful wife not speaking and showing me an ultrasound picture clearly indicating 2 embryo sacs!

The pregnancy went great, well, aside from the morning sickness that was more like all day and all night sickness throughout the pregnancy.  Yuck.  The delivery went well.  The babies were healthy, Apgar scores 9/9 for both.  Everything seemed perfect.

I Think Something is Wrong?

After about 6 weeks, Rebecca said Savanna was having these “episodes”.  One night, Savanna experienced one of those episodes in my arms.  I didn’t panic, but I remember not sleeping well that night as something was clearly very wrong with her and I had no idea what.  A couple of days later, another episode in the pediatrician’s office initiated an ER visit.  That night in the ER was terrifying.  We did not know anything about what they were talking about, and the activity seemed like a frenzy.

Something Is Definitely Wrong.

After passing through the ER to inpatient care at CHOC with Savanna having seizures, we were blessed to fall under the care of Dr. Mary Zupanc – a leading expert in childhood epilepsy.  Epilepsy in general is defined as the occurrence of 2 or more unprovoked seizures.  Unlike adult onset epilepsy, childhood epilepsy in infants is devastating to the developing brain.  Growing evidence indicates early and aggressive diagnosis and treatment yields the best developmental outcomes.  The first step was to rule out all possibilities for Savanna’s seizures being provoked.  This included: a comprehensive history of our entire family, examination of the pregnancy and birth, description of the first months of her life, a physical examination, imaging, and investigation for infection, injury, abuse, etc.  She was connected to video electroencephalography (VEEG) apparatus which measured activity in her brain.  What began as a about an hour test evolved into a 30 hour long-term monitor.

First EEG, Dec 18

The second day in the hospital would see the policeman hovering around our room disappear as injury from abuse was ruled out.  Next steps were a chromosomal micro array test to check for abnormalities, targeted genetic testing for variants in genes known to cause epilepsy, a comprehensive panel of metabolic testing.  This included more urine, more blood, and a lumbar puncture to harvest cerebrospinal fluid (CSF) in a very controlled manner to explore possibilities for metabolic disorders, rare infections, etc.   Finally, a MRI of her brain using advanced protocols.

Sunday afternoon, the Dr. Zupanc visited our room with her team and confirmed a diagnosis of Infantile Spasms (IS).  The news was crushing.  We had researched IS a little and the statistical outcomes were scary.

Savanna had hypsarrhythmia (a very chaotic brain wave pattern), discontinuity (flat brainwaves with no activity at all globally at times), and no normal sleep patterns in her EEG.  IS occurs at a rate of only 1 in 4000-6000 live births.  It scrambles the developing brain, arresting psychomotor function, thereby potentially reversing milestone achievement and/or moderately to severely slowing development – permanently.  Our doctor’s words specifically, ”You need to mourn the loss of your normal child, she is gone.” Harsh words, but a true statement that took many months to process.

A piece of information I initially could not process was the recording of 18 complex partial seizures during the 30 hour VEEG.  All 18 originated from the left temporal and occipital region of her brain.  Acquiring the medical records was very instructive in understanding the real situation after the clinic visits – which can overwhelm you.

My mind raced forward wondering about the future and my thoughts swung from as simple as wondering how she would do in school to wondering if she could die from one of these seizures.  Study data readily available indicated a grim outlook for patients like Savanna.  The epileptologist told us “You cannot trust most information on the internet, as most of it just isn’t accurate…”   She went further to say, and I paraphrase, “we are learning that very aggressive treatment early in the process allows a better outlook…”  Looking back, honestly I didn’t know what to think.

Why Did This Happen?

A question pondered even by the most faithful in God.  Most likely, she experienced a spontaneous genetic mutation at conception that manifested while the brain was forming in the womb.  This is a complicated process where cell proliferation, neuron development, and cortex organization occurs.  It is a fragile process, despite the robust outcome experienced by the majority.

So, What Does She Have Exactly?

Infantile Spasms (West Syndrome), is still considered a primary diagnosis, with three variations: idiopathic (no known cause), symptomatic (a secondary condition where cause is known such as a brain malformation, tumor, injury, etc.), and cryptogenic (where the cause will be known eventually).  Growing evidence shows a trend towards the symptomatic diagnosis and its association with brain malformation is significant.

Untreated or even not fully controlled, the IS would likely wreak havoc on her brain.  She would have very slow development.  The IS would evolve into Lennox-Gastaut Syndrome (LGS) where she would have perhaps multiple seizure types, and low chance of seizure control.  She would most likely be affected globally, but would probably have some major systems affected more than others and this might lead to other diagnoses such as Cerebral Palsy.  She might walk, she might not.  She would not be able to live on her own.  She may or may not experience love and happiness.  Most likely, her lifespan would be very short.  It was clear, we needed to act aggressively with a sense of urgency.

So What Now?

She started ACTH monotherapy on December 19th, the day after her diagnosis.  This is one of two FDA approved frontline treatments for IS.  It is hormone therapy that stimulates the adrenal gland to produce a hormone that affects the brain.  She experienced significant hypertension right away, which kept her in the hospital while gaining control.  Christmas Day, Savanna was discharged.  I walked out of CHOC, 8 days after our ordeal had begun.  There was a feeling of closure to this horrible chapter of her life.  But it was just a preface.

Savanna had been on the ACTH monotherapy for about 8 days when she experienced her last Infantile Spasm cluster.  When she did not have a cluster on December 28th, we were beside ourselves and honestly didn’t know what to think.  She was cured, right?  Wrong.  I believe while God was allowing this, He was also leading us wisely to the right choices.  It was difficult to process, but He was with us.

A routine EEG December 30th, would confirm lack of hypsarrhythmia, lack of discontinuity, presence of normal sleep patterns,  – all good attributes of an EEG – but Savanna was still experiencing some complex partial seizures.  She started Sabril (Vigabatrin) January 1, 2012.  That was the second front-line medication intended to treat the Infantile Spasms as well as the complex partials.  (Sidebar: the Ketogenic Diet (KD) was also presented as an option but most people felt she was so small in age and size, that she may not tolerate it very well and monitoring and maintenance may be difficult.  As a result, we did not try it at this time or as the first treatment option.)

Profound Insight.

We later obtained the records, and with a greater understanding of the situation read the minutes of the discussion in a clinic visit on December 30, 2011.  Dr. Zupanc wrote that she told us that Savanna probably had Cortical Dysplasia and would benefit from a surgical treatment.  She went further to annotate that she told us that Savanna would probably need a TPO (Temporal Parietal Occipital resection)  and would have about a 40% chance at seizure freedom.  About 9 months later, that is exactly what transpired.  She also said a hemispherectomy may be considered to control the seizures.  Amazing insight so early in Savanna’s Journey.

Suddenly Having a Special Needs Child – A New Normal

Within a couple of weeks of the start of ACTH therapy, milestones melted away, muscle tone liquefied, and nearly lifeless was our Savanna.  She stopped smiling and laughing and started crying and fussing.  God’s plan for Savanna was still unclear to us.  He did not cause Savanna’s situation, but He has allowed it.  I prayed, we prayed, others prayed from far away places for a cure and a stop to the suffering, for a miracle through divine intervention we call modern medicine.

2012 February

After a few days in the hospital with double pneumonia

The side effects from ACTH therapy (Cushing’s Syndrome) overcame Savanna’s ability to thrive.  She was silently aspirating having lost full command of the breath/swallow muscle control and we didn’t realize it until it was too late.  The chronic aspiration of feeds had finally manifest into pneumonia and she was in respiratory distress.  To the hospital.

Once there, I walked into what seemed like chaos.  More or less dismissed as an important person in her care, I finally met the doctor orchestrating this effort and could see the genuine concern for her well-being in his eyes.

What became the next 21 days, was a very difficult experience as a parent.  In and out of the PICU, the feeling of helplessness filled the air.  The doctors seemed to have few options left after about 10 days and the treatment eventually became a wait and see event (with lots of drugs too).  We were asked if we wanted a DNR implemented.  It was a really tough time to get through.

Rebecca and I were trying to keep Savanna’s situation separate from our professional lives for fear of discrimination.  An extended hospital stay removes the boundaries of separation.  It opens the curtain to the audience despite all efforts to keep it closed.  The veil of secrecy cannot be maintained while being honest with your friends and co-workers.  While I was working significant hours overnight remotely from the hospital, it went mostly unseen at that time.  And, it did not replace my presence in the facility.  It eventually catalyzed major change in our family as our paradigm shifted.

Moving Forward

Savanna was discharged needing supplemental oxygen, feeding through a NG-tube, and monitoring of vitals.  A few weeks after the last dose of ACTH, she eventually shed the need for the oxygen, the very close monitoring of vitals, and many of the medications related to treating the ACTH therapy side effects.  All of this made life easier.

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Another long-term VEEG would show she was not having complex partials, but still had abnormal activity and some electrographic or sub-clinical (simple partial) events.  This good response to medication in the world of epilepsy, is commonly called “A Honeymoon Period”, as it refers a time period with good seizure control or perhaps seizure freedom.  You live life unlike what you could have done before.

Still struggling with feeding and failing another swallow function study lead us to place a permanent G-Tube.  A Monday morning clinic visit transformed into a 3 day hospital stay.  Looking back, it was the single most helpful prophylactic measure we took for Savanna’s health.  It was great advice from honest doctors, and we were really fortunate to have listened to their council.

Continuing in this honeymoon period, she responded well to the medications and began to thrive.  There still were difficult times, but we needed to take full advantage of these ‘good times’.  We started occupational and physical therapy.

Big Changes Coming.

It was during this time we decided to move closer to our family in the midwest.  The criteria matrix guiding our move lead us to Houston, Texas. We decided I would stay home to raise kids and manage Savanna’s care as it was clear she needed full-time help.  Six weeks from the time we decided to move, we were unpacking our things into a new house in Houston in June, 2012.

Laguna Beach August 2012

With the future unknown, we scheduled a 36 VEEG coincident with a planned trip back to CA for a wedding.  We arrive in CA, and on the second day witness Savanna have a seizure.  It was a breakthrough seizure, or so we thought.  It escalated rapidly, and she began to have cluster episodes.

Once again, I felt the need to hide the problem that week.  We were there in support of family for their wedding day.  We did not want to become a distraction.  Fortunately, we had the 36-hour VEEG test scheduled, and everybody around us knew it.  So were able to keep the emotions and situation under the radar at the time.  How small were those thoughts?

The brain is a unique organ, the only organ that can regulate its supply of blood.  It goes through dramatic change in the first 3 years as cortex organizes, neurons migrate, and pathways form.  The infant brain is very different from the adult brain even in the same person.  It is so easy to blame a change in medication (or even a lack of change) for new seizure patterns in young children that could be initiated by growth and change.  Savanna’s brain was changing, and so were her seizures.

Not knowing when her situation was going to change, keeps you in a constant state of heightened awareness, and let me say that it is an exhausting way to live.  It drags you down.  It demands your attention.  It absorbs all your patience, leaving little for others in your life.  For parents, Epilepsy in small children can represent a security stolen from you that can never be regained no matter how effective a control measure.  You always wonder about the random abnormal looking movement or facial expression.

Complex Partial Seizures, Without IS

VEEG captured a significant cluster and consultation with our epileptologist later that day confirmed our fears.  She had a breakthrough complex partial seizure cluster that originated from the left posterior temporal lobe, which is where she has always had abnormal activity.  This was a new seizure type, as it was not accompanied with IS.

The first step was an attempt at medical control.  Savanna was loaded with Phenobarbital to control the seizures.  She slept almost immediately with initial load via IV.  She awoke completely altered.  Her hysteria and rage was something I had never seen before from her, or any other child.  I used to question the need for the metal cribs that convert into a ‘cage’ in the EMU.  No longer after this day.

A final discussion with Dr. Zupanc about her disposition was troubling.  She felt her behavior may not be related to the drugs.  This could be the natural progression of her disorder in her brain.  Discharged and concerned, we took her to attend the wedding reception.

It was refreshing being around family, but 50 hours straight in the epilepsy unit requires some decompression before re-entering society.  I watched my daughter go from person to person, and I could see how far away she was her in disposition.  All I wanted do was hold her.

Seizures and Traveling.

One day later in Phoenix during the journey home, the seizures returned.  Still inexperienced at dealing with this, a sense of urgency overcame me.  I didn’t know what to do.  I admittedly had a few minutes of panic.  I called Rebecca (who took a flight home to cut the time away from work), and I could hear the panic in her voice as well.  We were both calling the on-call neurologists in California and Texas trying to get someone to help us.  We only had one clinic visit with the neurologist, Dr. Gretchen Von Allmen, in TX and they were not fully up to speed with Savanna’s situation at that time given the new developments.  Finally, I worked through my options with the on-call Fellow neurologist with the new team in Texas.  We decided to increase the Phenobarbital, then watch the situation.

We got on the road the next morning to El Paso and the seizures started again.  In the end, we maximized the Phenobarbital, but it did not control the situation.  I rushed to get home and to the hospital.  Looking back, it was not necessary to rush.  Straight downtown to TMC after driving nearly 750 miles, did not help the situation although it felt like it was the correct course of action.  I felt better, but the stress probably contributed to Savanna’s seizures.  After some time in the ER, Savanna was transferred to the EMU (Epilepsy Monitoring Unit) at Memorial Hermann Hospital.

What, Seizures Coming From the Right Side Now?

A 23 hour VEEG indicated she was having seizures originating from the right and left side of her brain.  Devastating news, again.  But this time it was different.  We had this hope that the right side of her brain was more healthy, and maybe she could still thrive if a hemispherectomy or smaller resection was undertaken.  Released from the EMU, off the Phenobarbital, and on Keppra, the seizures were still happening.

A Perfect Storm

We were given a script for the diazepam rescue medication and instructions on when to administer.  This in and of itself was a bit scary.  Dr. Von Allmen was boarding a plane to France where she would stay for about 2 weeks.  It was a trip that is a once in ten-year event – what are the odds?  Her availability was limited to overnight email while her Fellows would make primary decisions.  We had no idea how difficult this resulting situation would become over the next 2 weeks.  It was a perfect storm.

What would ensue was nothing short of a nightmare for any parent.  Savanna went from a few seizures per day to around 100 seizures per day, coming in clusters of 2-15 seizures.  I think any parent’s first thought is to take her to the emergency room.

It took a number of ER visits, but we finally learned a difficult lesson during those two weeks.  Even as advanced as we are here in the USA, not only are emergency rooms not designed to deal with infants like Savanna, but that there really does not exist a better vehicle to access care in crisis.  Growing evidence supports the assertion that all means possible be taken to control the seizures.  This theory doesn’t flow into Emergency Room care protocol for this scenario.

During these two weeks, we had days that seemed manageable, and days that seemed completely out of control.  We didn’t have access to needed medications, experience with their administration, access to diagnostic services, or a plan.  We were genuinely frightened for our daughter’s life, and contemplated taking her back to her first doctor in California.

A Significant Learning Period

The next couple of months much changed to gain control of the seizures.  Watching the seizures increase in frequency and severity despite many changes in medications was scary.  The following is a short list of what we changed in an aggressive attempt to control her seizures:

  • optimized her Sabril dose to the maximum 200mg/kg/day
  • optimized the Keppra to the maximum 60mg/kg/day
  • added on Ativan at .1mg/kg TID
  • increased the Ativan to .2mg/kg Q2
  • administering Diastat almost daily
  • implemented the Ketogenic diet at 3:1, 3.5:1, and 4:1 ratios
  • discontinued Ativan
  • Added on Onfi targeting 10mg TID

We saw a great reduction in seizures with the Onfi initially, but in the end it failed.

The momentum toward epilepsy surgery was building quickly as her seizure pattern on VEEG scans became very repetitive and all activity was focal in onset.  Another MRI revealed nothing supportive of surgery in the official report.

Savanna’s first MEG study captured a textbook 60 second seizure and was very telling about what was happening and where in her brain.  It was very compelling evidence for surgical intervention.

The surgical path still being defined, her seizures worsened.  30 second single seizures turned into 4 minute seizures, clustering for up to 30 minutes, despite rescue medication administration.  It took over our lives.  She was non-mobile and non-participatory in life at this point.  There was little measurable development.  We considered a medically induced coma until the surgery date.

Next Step: Surgical Treatment.

We meet the neurosurgeon and after an hour or so with him, we more or less understood the major components of the procedure.  The plan was to first perform electrocorticography (ECOG) in the OR.  If the data strongly correlated with diagnostic data to date, perform a resection the same day.  If there was an uncertainty, close, and monitor grid data in the EMU for a few days.  Back to the OR for resection based on ECOG data.  While our surgeon was fine with either direction, we felt comfortable with our team that they would make the best decision for Savanna when necessary.

Savanna’s surgery was delayed to October 24th from a yeast infection on her rear.  We could not have been more anxious about this day.  We made plans for family to be here to not only help with the other kids, but also to experience some of the hospital time with their granddaughter.  The delay in her surgery allowed the grandparents to witness Savanna seizing and the resulting complications with breathing, eating, pooping, etc.  They witnessed administration of rescue medication.  Emotions ran high.  I don’t think they were ready to see what they saw during that time.  Regardless, we really felt fortunate to have family that could walk beside us with Savanna during this part of her journey.

As a side note, many children with seizures have other major systems of the body affected.  For Savanna, her GI tract was difficult to maintain regular movements.  Her situation swung like the pendulum on a grandfather clock once we introduced miralax.  What a joy.  Constipation would lead to pain during urination and frequent bladder infections.  There is no parenting handbook  that can prepare you for what happens after 5 days without a bowel movement coupled with doubling the miralax dose each day until the movement (starting from and adult dose).

Savanna did not handle the surgery well at all.  Because of her sedentary lifestyle on so much medication, she was not healthy going into surgery.  She repeatedly desaturated as her breathing tube became clogged with mucus.  This result was an incomplete resection after grid data was clear on what to resect in the OR.  A lesion was partially resected that included portions of the temporal and occipital lobes, neither lobes being completely removed.  Pathology would show Focal Cortical Dysplasia (FCD) Type 1 widespread, and Type 2a in a local area.  The type 2 is consistent with the lesion they resected and the probable focus for the seizure activity.

Though we took a new child home 2 days after surgery, it wasn’t until about a month post-op, we realized what God had allowed to happen.  We did see some abnormal activity now and then, but that was not unexpected while her brain ‘reorganizes’.  Savanna had a new outlook on life.  She needed exposure to as much as possible to accelerate her development.

The Storm Has Passed, and It Is Like a New Beginningoctober_2012-13-scaled1000

We could travel now.   We could live life in a more normal way. She was calm.  Yes, finally, she was calm.  She was smiling, laughing, and rolling around.  She was pushing up on her hands and made lots of new noises.  You could hold her, and she liked it.  This was not how she acted before surgery.

Savanna’s progress became simply amazing.  Each day was better than the one before.  Days were accented by someone saying “Hey come look at what Savanna is doing…”  The tone was one of elation, relief, and happiness not the somber, ‘here-we-go-again’, tone of the past when a seizure cluster would strike.

Most importantly, she was not having clinical seizures.  It was nothing short of a miracle.

We began the slow, step-by-step process of weaning her off the AED’s and Keto diet.  A trip to visit the family over the Christmas holiday would see the contraction of a nasty gastroenteritis bug that just had its way with our family.  Austin and Savanna were hit especially hard, and in the end, it was the straw the broke the camel’s back with the Keto diet.  We had to stop the diet to get her healthy again, as she could not keep down feeds, even when I reduced the ratio.  Not the end of the world, and now she could eat anything.  We learned she really likes Cheetos!

Return of Seizures

At three months post-op, Savanna had a 23 hour VEEG which unfortunately revealed Savanna was still having seizures.  They were partial in nature, and subclinical.  Subtle signs were there, we just weren’t astute enough to notice.  She was still having 2 and 3 minute seizures.  This was very troubling as we had seen her pace of development take off in every way.

We added on Trileptal while we weaned her off the Onfi.  We began the wean off Sabril and it seemed like her development pace increased dramatically.  The daily PT really advanced her abilities.  She went from barely being able to roll over to sitting up on her own, immobile to a child that was bunny-hop crawling around the play area, and just starting to pull to standing position on furniture.  The complex partial seizures would return with teething pain.  Onfi was added back on, and the Sabril was held at a really low dose.  Another MRI would reveal nothing new (but needed to generate the 3d model for another MEG study).   The second MEG study was not as dramatic in success, but did offer data that was useful.

How Bad Is It?

Sitting in the exam room, we waited for the neurosurgeon who finally burst in dramatic fashion.  He greeted us, then just sat down and said “How bad is it?”  Rebecca and I didn’t know how to answer at that second.  Our feelings were implicit in our presence, but not from his perspective.  The visit ending with him asking us to think about the proposed procedure, and let him know if we wanted to proceed. After a lot of thought, I put the pen to paper (or fingers to the keys rather) and this is what came out:

 How bad is it?  The first question you asked was the one we least expected, thus the fumbling responses.  Yes, she was crying and fussy for the 15 minutes you saw her and we agree, that in itself is not epilepsy.  Until you have lived with a child like Savanna, explanations to your answer are difficult.  Many of us chosen parents attempt to portray this fact/emotion blend through blogs and so forth.  But, until you have lived it as a parent, you cannot understand.   Separating the facts from the emotions is the key to your answer.  You are in a unique position as a highly trained professional dealing with kids like this often, and a parent yourself of I presume typical children (my apologies if I am mistaken).  I have given up my career for the time being to take care of Savanna.  Rebecca has assumed a role out of necessity that supports our basic requirements financially and from an insurance standpoint.  This role is slowly corroding our life as the job sucks – simply put.  Yes, we can and will change that, but when you are in the middle of a battle, sometimes strategic decisions are made to win the war and that was one of them.  We moved our family closer to your place of business and our family for her sake.  It has nearly broken us financially, and for sure wrecked our future financial planning.  She is developing, but at a snail’s pace.  And, now complex partial seizures are back and clustering.  Do we have diagnostic proof of the complex partial seizures, no.  We are willing to run more tests if you need to see more data.  I am using ativan to intervene occasionally and now onfi is scheduled again, TID.  It was just a personal choice to use ativan versus rectal valium.  You are not hearing about idiotic ER visits now, for several reasons.  Dr V is not in France and unreachable.  Now, we are armed with experience, knowledge and access to medications to help her quickly.  It is not because she is not seizing.  Yes, I agree and admit the seizure frequency is lower than before the first resection.  But, how bad is it you ask, it is bad.

Yes…we can probably optimize medications to help her with the complex seizure control, but it will be at the expense of becoming non-participatory in life.  We already see that happening now.  We also feel confident this will over time degrade her state of health and make the procedure more difficult for all parties.  And, she is still having lots of electrographic events.  This is documented.  We are ready to act now.  We say that without the benefit of years of experience you have seeing patients like Savanna and knowing that we are making a dramatic decision that cannot be undone later.  We are making the most informed decision we can based on the collected data, opinions expressed by you and Dr. V, the stories of other children in similar situations, and our faith in your God-given understanding of the science. 

Savanna needs your help sooner than later if you feel she can safely withstand the procedure.  You can help her.  We trust you, Dr. V,, and your team members, to the extent that we are prepared to hand her life over to you for a short while why you all do what you do best knowing the outcome has lifelong effects, some good, some bad, and some risk of unintended permanent effects.  We trust your judgment on the intended procedure plan.  

The Second Resection

We are living now for this opportunity that has given many other parents hope for seizure freedom, and hope for a near-normal life for our daughter.  If successful, Savanna has a 40% chance of becoming seizure free after surgery without medication.  Seizure freedom is required to give her the best chance to develop to her fullest potential.  The odds may not sound good, but when Savanna started her journey her odds of averting severe mental, physical, and emotional handicaps were in the 5 to 10% range.  So to us, 40% sounds very good.  It is “cause for celebration” as our first epileptologist described surgical treatment.

In general, the risks involved in a second surgery are higher than with the first.  And this time, the plan puts the resection close the coveted motor cortex, that when negatively affected can lead to moderate to severe paralysis on the opposite side of the body.  Savanna still is barely above the minimum 10 kilograms at which our surgeon will agree to operate.  Weight requirement you ask?  It has to do with blood volume.  Not enough is not good.  Navigating the previously resected tissue in her brain presents its own set of challenges versus virgin tissue.  She could have a stroke during the operation.  The surgical team could have to abandon the surgery prematurely, requiring a third attempt.  We could lose her.  Most of these risks are very, very small according to the neurosurgeon.  It is beyond terrifying to agree to these risks for your child, when they have little say in the matter.  We stay focused on the 40%.

We have to give her this chance.  We pray that we are not selfishly doing it for ourselves, for a chance to have our healthy baby girl back, a child without lifelong harsh sentence of unknown special needs.  Is it really possible?  How terribly arrogant that sounds as I put my thoughts on paper.  We will love her no matter what, fiercely, and always, but we will do anything and everything within our power to take this burden away from her…away from us…to give her a chance…even a glorious 40% chance…  We pray it is the right decision.

I know that while she’s under, God is holding her. I told her to tell Him, thank you for the time He’s given us with her.  Thank Him for choosing us as her mommy and daddy.  As hard as this has been, we are so lucky and happy to be her parents.  It’s not just the fear of losing her that scares us today.  We have such hope and such fear of the outcome.  It’s possible that the road that lies ahead is harder than the one we have traveled thus far.  We will travel it together, regardless.

The Second Surgery.
Savanna Hospital Second Resection

She struggled to breath, she struggle to swallow, she just struggled.  We were a little taken aback at first, given our first experience with recovery went so smoothly.  That night in the PICU was excruciating.  To see her seeming to struggle just to breathe was painful.  More steroids, more racemic epinephrine, more high flow oxygen, more pain medications, just more of everything.  A few days later, the situation was better but still really difficult.

The right-sided gross motor weakness subsided within a week.  Still today, she has a lack of concern for her right side and will always stand up using her left leg.  We continue to work on forcing her to use her right side to overcome the deficit.

She was very agitated and little could be done to help her.  The grandparents became overwhelmed managing her.  We became overwhelmed managing her.  She was just so unhappy, and this became very demoralizing for us as parents.  And, the complete refusal to swallow liquids or suck was not expected and disappointing.

Admittedly, I used ativan occasionally when the situation was really out of control.  All her doctors but one said this was a bad idea, and implied we didn’t know how to take care of her.

She finally reached a bend in the road with the crying and fussiness about 30 days post-op.  And, it probably had much to do with two of four incisor teeth finally breaking through the gum line.  One thing I have learned is that life’s normal challenges for young children are just that much harder for Savanna.

I realize now these periods were core training for parenting a special needs child.  Necessary to experience to progress as an effective parent.  With faith in God’s word, living through these periods and not losing your sanity is possible.  And, it helps me see the happy times more clearly.

Play time after a bath with twin brother.  Austin and Savanna.

During all the discomfort, Savanna made strides in development.  This was a calming for me, as I knew this would not happen if seizure activity was occurring in the way it was before surgery.  We are using a compression vest and AFO’s to help her with balance, standing and moving about.

At this time, it could not feel better to see her respond when you walk into the room and call her name.  And, then proceed to crawl toward you and transition to tall kneeling with her arms out and up to hold her.  Then comes the inconsolable crying and fussing.  Her movements and behavior when you hold her sometimes is like trying to hold a 25 lb mealworm.  She is just everywhere, every which way, and really low tone at times.

Recovery In The Shadows, About 60 Days Post-Op

In the shadows, we see great things from Savanna.  She responds to her environment like never before.  Strength, she gains every day.  Finding the blessings in each day are easier.  Still refusing to eat or drink, we are blessed to have installed the G-Tube which has allowed us to keep her healthy in spite of her behavior.

She now surprises me with what she can do.

Look at me Dad!

I see a toddler in the shadows exploring furniture and a house she has never seen on her own.  I see things that scare me when she climbs something on her own the first time.  Through teary eyes, I see the innocent love from her brothers who don’t really know what is going on yet.  I see a toddler nearly 21 months old, functioning emotionally at a typical 6-9 month level.  I see a child we are just getting to know.  From what I have read, she is just getting to know us as well.  I see all of this in the shadows of very quick moments throughout the day.  Most of the time though, she is really unhappy and quite a handful to manage.

I have learned a great deal about the sensory input that Savanna needs to regulate herself.  She needed a entirely new sensory diet.  One that included compression, heavy, and vestibular input.  I used the Wilbarger brushing protocol on her.  I built a large sensory swing which has been a savior some days.  She likes music, so we danced a lot.  I learned a lot about patience.

Sunshine After The Rain, About 90 days Post-op

There is nothing like a 3400 mile road trip to bring out the best behavior in everyone – all stuck in the van for what amounted to north of 64 hours.  My apprehension taking Savanna on such a long road trip was high.  Her demeanor the past three months tempered my expectations.

The results from the Bronchoscopy and EGD scope of her esophagus showed nothing was wrong.  Rebecca took her that day, and I remember getting the call feeling depressed.  I desperately wanted something found affecting her that could explain her lack of eating and near constant agitation.  Despite the fact she is not having seizures, we cannot live like this.  For the first time, I actually thought maybe we made a mistake with the surgery.  It was like a dark cloud was following her (and me) and the rain just wouldn’t let up.  I said a prayer that day for God to give me strength to carry on.

So off we went.  Once at the Grandparent’s house, a miracle happened on the third day.  After a typical difficult morning, she awoke from her nap and didn’t cry!  Like the sunshine after the rain, Savanna was suddenly happy!  It was like a new beginning that day.  I didn’t know what to think or even how to appreciate it?  She wasn’t screaming and crying constantly, but I assumed that she would start crying again soon.  Thank you Lord!

She became a Mommy’s girl instantly.  She wanted little to do with me, especially when Rebecca was within sight or earshot.  How selfish was I being a little depressed by this particular behavior, being the only one who could seem to regulate her for any length of time in the past few months.

She could not have been happier once at Rebecca’s parents’ house a few days later.  I tried to explain to those came to visit us the first night in Louisville that this had just happened.  My words fell on uninterested ears, and none of them have really seen her in the last 3 months.  I should have just kept quiet. She smiled.  She laughed.  She was very deliberate with her actions and movements.

The joy of peace and happiness filled the air.  I learned on this trip not to disturb such joy with unnecessary conversation.  I am still learning how to respond appropriately to questions from many different types of people.  The tasks that go into her daily routine make it easy not to see the little victories as clearly as others.  For some, it makes it easier, but not for me.  I am still learning how to exude happiness, elation, and even satisfaction about how great she is doing compared to where she was less than 1 year ago.

I have immersed myself in her every detail of her condition and care, delving deep into how persons like Savanna ‘recover’ or even just cope.  I have results from Early Intervention testing, advanced genetic testing, detailed clinic notes from many types of doctors, and feedback from therapists who spend most of their time with kids like Savanna – all weighing on my mind.  To cope, I spend time helping others work through similar situations, providing support, being a good listener.  All of this activity brings gravity to Savanna’s situation.  Yes, she looks great.  Yes, only Savanna knows what she is going to do in this world.  Yes to all the anecdotal advice we are given.  But my perspective is different. and often I feel judged for not just being so serious about the situation.

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4 months today post-op TPO resection. 4 months today seizure free.

I think once hit on your blind side a couple of times, you naturally tend to pay more attention to that blind side.  In this case, the blind side is her predisposition to seizures for an unknown reason.  Pathology revealed FCD in every specimen.  The margins contained only FCD Type 1, which is ominous in terms of her long-term outlook.  And, maybe it is not seizures that becomes the biggest challenge.  Maybe it is the level of development she is able to reach in one area or another that presents the most challenge to her and us as parents and leaders.

There are still many unknowns.  Today she is isn’t having seizures that we know about, 5 months post-op.  If you would like to follow Savanna’s Journey we invite you to visit the blog.  You can find it at http://www.savannalininger.wordpress.com  Once there, in the right column at the top, there is an email subscription widget that you can enter your email address to receive updates.

Thanks for reading, God Bless,

Ken and Rebecca Lininger

Joey’s Song

In October 2005, Mike and Nory Gomoll celebrated with joy when they adopted a beautiful baby boy named Joey from Guatemala.  Joey had large, chocolate eyes, a thick mat of dark hair piled high on his head, and an infectious smile.  Joey arrived to join his family when he was six months old, about the same age that his older brother and sister were when they were adopted from Guatemala as well.

Joey quickly adapted to life in the U.S. and loved playing with his older siblings.  He loved music, Elmo, and had an early appreciation for songs and  rhythm.  Things changed, however, when Joey was ten months old.

Joey was visiting his grandparents when he had his first seizure.  At first, his grandfather didn’t recognize the unusual, rhythmic movements of his arm and upper body when Joey sat on his lap. When his Aunt walked by and observed the scene, however, she knew that something was amiss.  Since Joey’s grandfather lived across the street from Illinois Masonic Hospital, his family members ran the short distance to the hospital for an evaluation.  Because of the unusual nature of his first seizure, Joey was admitted to the hospital and he received an extensive evaluation.  All of his initial testing was negative and Joey eventually discharged with the diagnosis of a simple febrile seizure.

But it wasn’t so simple.  Several weeks later, Joey had another seizure.  Because he had a fever at the time of the next seizure, Joe’s again was diagnosed with a febrile seizure.  With increasing frequency and unrelenting insidiousness, the seizures continued.  Sometimes Joey would just stare into space and have involuntary movements of his wrist, sometimes the seizures were much more ominous.  Early on, the seizures were almost always associated with fever.  Joey was started on phenobarbital for treatment of recurrent febrile seizures but his parents were told that he would eventually “grow out of it.”

Soon enough, Joey was having seizures with increasing frequency.  The recurrent attacks on his growing brain began to show adverse effects on his development.   Joey never learned to speak more than a few words, although he loved to interact with others.  He learned to communicate with loved ones and family members  in other ways.

As Joey continued to have seizures, he tried multiple different medications with little or no improvement.  His parents noticed that excitement  triggered seizures so they tried to keep Joey as calm with as little stimulation as possible.  The Gomoll family fell into a natural rhythm.  Mike watched after older and more active Sam and Julia and Nory stayed with Joey to protect him as much as she could from the constant threat of seizures.

Desperate for answers, Mike and Nory took Joey to see a pediatric neurologist at the Pediatric Epilepsy Center at the Children’s Hospital of Wisconsin in Milwaukee.  Joey and his family met with the physician there who, after hearing his story, diagnosed Joey with “classic Dravet syndrome.”  This was the first time that Joey and his family had heard of the severe form of intractable epilepsy associated with recurrent febrile seizures, developmental regression, behavioral changes, and prolonged seizures.

Mike states that once Joey received the diagnosis of Dravet syndrome, they “finally understood what was going on.”  While the Gomoll family continued to fight Joey’s seizures, they also found ways to revel in the small things.

“When you have a child with Dravet syndrome, life is pretty simple,” Mike remembers. ” Joey knew how to take out DVDs and put in DVDs.   He would do that over and over again as he watched Elmo movies.  The stuff that other parents would take for granted, you don’t.  You revel in every bit of connectedness that exists.  You celebrate every moment of joy, every moment that you’re not in the back of the ambulance.”

“A lot of my memories of Joey are of laying with him for hours after his seizures.  He would lay on my chest with his hand behind his head and lay quietly.  I knew he didn’t feel well, but we were there together, and that meant a lot to me.”

In March 2010, Joey died from complications from epilepsy.

Joey didn’t speak much, but he had several words for dance.  He understood rhythm since early childhood and music always seemed to calm him.  In Joey’s memory, Mike and the Gomoll family have started Joey’s Song , a nonprofit foundation supporting special needs children and all those suffering from seizures.  Joey’s Song has produced four CDs with contributions from famous artists such as Roseanne Cash, the Cowboy Junkies and the Crash Test Dummies.  Joey’s Song has an upcoming benefit concert in Madison, Wisconsin on September 19, 2013.  Please visit http://www.joeyssong.org to learn more about Joey and Mike Gomoll and the work Mike is doing to fight epilepsy.

And, to continue to raise awareness for all of us, please pass it on.

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Lisa, Bear, and a lifetime of miracles

Lisa was accustomed to giving birth to big babies.

Her first child was a robust 9# 5 oz at the time of delivery.  Her second child was a strapping 11# 8 oz by the time she met the world.  But when her third child, Bear, was born, he weighed 12# 11 ounces just prior to his descent down the birth canal.  Because Bear was such a big baby, a relatively common but potentially dangerous complication occured during his delivery that would affect his life forever.  His fleshy shoulder became lodged against his mother’s pelvic bone.  Although Bear’s infant circulation separated from his mother’s as the birthing process happened, his body could not get out to receive his first life-giving breaths.

When Lisa’s obstetrician determined that a vaginal delivery was not possible, the pair was rushed to Cesaerean section.  Within moments, Bear was extracted from his mother’s womb — limp, blue, and already showing evidence of seizure activity.  The neonatal team present in the delivery room performed CPR, administered medications, and resuscitated Bear for twenty minutes.  Lisa, a nurse in the neonatal intensive care unit herself, remembers that at one point the neonatalogist who was guiding Bear’s resuscitation consisdered “calling it,” and letting Bear slip away.  Yet, with the determination and strength that Bear would display throughout his life, the pediatrics team was able to regain a steady heart beat after 20 minutes of resuscitation.  This was the first of a lifetime of miracles.

Although Bear was safely outside of his mother, his neurologic prognosis was grim.  After his birth, Bear was placed in a drug-induced coma to quell further seizures.  As the medications were lifted, he was noted to have low muscle tone, decreased reflexes, and absence of a suck/swallow reflex.  A tube was placed in his stomach to provide nutrition and later he had a more permanent gastrostomy tube placed.  Bear was hospitalized for the first six weeks of his life.  He left with a diagnosis of “severe hypoxic ischemic encephalopathy” related to birth trauma and a future that was uncertain.

“Bear became everyone’s baby,” Lisa remembers.  Her father, a surgeon, and her mother, a nurse, babysat frequently and helped care for him when needed.  Other family members and friends helped pitch in to give rides to the doctor or hospital if needed.  Everyone cheered when Bear met each of his developmental milestones — although later than typically developing children — one by one.

When Bear was three, he had his first generalized seizure.  Because the seizure was prolonged, Bear had an evaluation for infection in the emergency room after the seizure.  He was not officially diagnosed with epilepsy, however, until after he had another generalized seizure approximately a year later.  Bear was started on Tegretol for control of his seizures.

Soon after Bear’s official diagnosis of epilepsy, he started participating in school.  The aide that was assigned to work one-on-one with him noted other subtle seizure activity throughout the day.  Repetitive chewing on a sleeve, staring off into space, and smacking of lips were determined to be seizures.  Keppra was added and Bear’s seizure activity decreased.

Since Bear’s diagnosis with epilepsy, Lisa has learned to identify the triggers for his seizures.  She’s recognized that sickness is a trigger, fatigue is a trigger, and abrupt changes in schedule are a trigger.  She also realizes that Bear is constantly at risk, since he attends schools where viral illnesses are a constant reality.  As a result, Lisa reports that she is “constantly checking on him” to make sure that Bear is OK and “someone is always with him.”  Lisa states that Bear was invited to some friends’ houses in the past for play dates after school.  Once she explained to the other parents Bear’s history of seizures, he wasn’t invited back.

 

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In many ways, Bear is the living example of a miracle.  He has gone from a small infant who almost didn’t survive neonatal resuscitation to a strapping young man who likes to bike, run, and play with his siblings.  He evolved from a baby without a suck/swallow reflex to a toddler with a G-tube to a boy who eats everything in sight.  Yet Bear is still susceptible to a multitude of seizures that can ruin a day, a week, a lifetime.  In so many ways, Bear is miraculous, yet a cure for seizures sometimes even alludes those who have obtained the unobtainable.

In Lisa’s words, “epilepsy is like an intruder in our house with a gun.  You never know when it’s going to go off, and you never know how it’s going to affect you.”

Please pass it on.

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Eliza, Purple Ribbons, and the Path to a Cure

When Eliza felt like it was time to do her part to raise awareness for epilepsy, she took matters into her own hands.

Literally.

As a recent high school graduate, Eliza took a year off before starting college so that she may have epilepsy surgery.  During her free time in a year otherwise filled with tests, hospital stays, and escalating anxiety, Eliza made a plethora of purple ribbons and informational flyers filled with facts and statistics about epilepsy.

“Wear this for me,” she asked, as she handed the ribbons out to friends and family members, then as she distributed them to local stores and businesses.  When Eliza’s friend, Julianna (see “Julianna and the Full-Circle Journey” for Julianna’s story) announced that she was going to study in Ecuador, Julianna took the purple ribbons with her to Ecuador as well.

Even after surgery was complete and Eliza started college at Hampshire College, Eliza continued her purple ribbon campaign.  During a final project relating to epilepsy for her arts education class, she handed out more purple ribbons and statistics about epilepsy to her classmates.  Now, Eliza reports that she sees a rainbow of purple ribbons on student’s backpacks at school, on neighbor’s coats at home in Vermont, and she dreams of them in homes in Ecuador.  It seems that small amount of purple satin can be enough to raise awareness over thousands of miles.

Although Eliza has had epilepsy since she was three years old, it wasn’t until recently that she was willing to talk about her seizures.  For most of Eliza’s formative years, she was embarrassed by her recurrent grand mal seizures and she tried as hard as she could to pretend that they weren’t there.  Even when Eliza had a generalized seizure in school and the other children were curious, she would shy away from discussing the event and move on to other things as quickly as possible.  Eliza’s parents responded by making sure they raised their daughter without allowing the fear of epilepsy lead to limitations.  Although seizures were a constant threat, Eliza knew the normal childhood joys of being able to swim, ride a bike, play soccer, and hang out with friends.

Looking back, Eliza credits her parents as much of the reason why she has been able to function so well in life despite her epilepsy.  “My parents never treated me differently nor implied that I couldn’t do something because I had seizures,” she remembers.   “Epilepsy was never part of the conversation.  They considered it a lot, but they did a really good job making me feel normal.”

Eliza’s neurologist is also part of why she has been able to do so well. “She recognizes who I am and has always treated me as a whole person, not just a person who has seizures.” For Eliza, the combination of a supportive family and an understanding doctor has made it much easier to get through the challenges of growing up with epilepsy.

The last seizure Eliza had at school happened when she was in sixth grade, then her seizures started to occur only as she was waking up in the morning.  Eliza was forced to miss school secondary to seizures but her illness was no longer as visible to her classmates as it had been before.  Eliza remained very quiet about her epilepsy for fear of others judging her until she was a sophomore in high school and when she began to consider moving away for college.

“Suddenly the gravity of moving away from home hit me,” she explained.  “What if I had a seizure in my dorm as I was waking up and there was no one there to help me?  What if I had a seizure when I was walking alone on campus?”  Eliza realized it was time to make a change.  Antiepilepsy drugs had never completely controlled her seizures and had led to some challenging side-effects.  Eliza knew that her options for better seizure control were a trial of a low-glycemic diet, placement of a vagal nerve stimulator, or epilepsy surgery to remove the seizure focus in her brain.

Eliza applied to college with her peers and got into Hampshire College – her top choice of schools.  Although she was excited and eager to move on to her next phase in life, Eliza deferred her freshman year on the last day possible for deferral.  It was clear to her that she should have epilepsy surgery to try to find a cure for her seizures during her year off from school.

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As Eliza came to grips with her epilepsy and learned to accept the uncertainty in her life as she grew, she also gradually became more comfortable talking about her seizures with others.  When she was 16, she started by painting a picture for the Expressions of Courage art contest for the Epilepsy Foundation.  When her drawing of an earth and the word “hope” written in multiple languages was chosen for the November page in the Expressions of Courage calendar,  Eliza had a tool to gradually step out and speak to others about her epilepsy.  Eliza remembers a teacher from high school as one of the first and most supportive people she spoke openly with about her epilepsy and the possibility of epilepsy surgery.  And once she made the decision about surgery, she began distributing purple ribbons.  “I went from being embarrassed and afraid to share to a complete reversal,” Eliza remembers.

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Eliza had epilepsy surgery on March 29, 2011.  Since her surgery, she has been seizure-free and now has been weaned off half of her antiepilepsy medication.  Her neurologist has plans to eventually wean her off all of her medication if she continues to remain seizure-free.  When I asked Eliza how it feels to be off some of her medications, her response was simple.

“It’s almost overwhelming at times.”

She’s excited for the possibility to be off medication but nervous at the same time.

Eliza is back at school and studying chronic illness and foreign languages. She states, “I hope to use my experience with epilepsy to make other’s experience with chronic illness more positive.”

At the end of our conversation, Eliza left me with one last beautiful image.

“Last year at the end of March, one year after my epilepsy surgery, my friend Julianna, my mom, and I went to the Epilepsy Walk in Washington D. C.  I’ve never felt so not alone.  There were literally thousands of people there and all the people with epilepsy were wearing purple T-shirts and all the people that were friends, family members or supporters wore white T-shirts.  It was amazing and uplifting to walk amongst a sea of purple T-shirts and to realize how prevalent epilepsy is.”

Eliza is not alone.  We are not alone.  Please pass it on.




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Meg: An RN with Epilepsy

When the neurosurgeon who performed Meg’s left temporal lobectomy was asked to describe what he saw at the start of her epilepsy surgery, he paused and explained through a undulating blue mask, “I’m looking at a bunch of yellow, contused brain slapped up against the skull that is a remnant from Meg’s previous injury.”

The surgeon’s exact description of Meg’s brain is easy to remember because portions of her surgery are available on tape and were visible for all of the Omaha metropolitan area to see.  Over the whir of a bone cutter and the staccato beep of a heart rate monitor, you can also hear the hushed buzz of the operating room staff working as the neurosurgeon comments on the findings in Meg’s injured brain.  Prior to surgery, Meg made the courageous decision to allow a local television station in Omaha, Nebraska tape portions of her pre-surgical evaluation and then parts of her epilepsy surgery to help raise awareness and inform others about epilepsy.  Even though she’s not awake, if you look closely during the video of the surgery, you can see a wisp of Meg’s dark brown hair peeking out bravely at the nape of her neck, as if her ebullient and bright personality could not be sequestered even in the confines of the most sterile and grave settings.

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Meg’s story began in the spring of her freshman year of high school, when she felt like she hadn’t a care in the world.  She was playing on the high school basketball team, had a great group of girlfriends, and had everything she hoped for.  Then one March afternoon, everything changed.  When an older girlfriend drove Meg and a group of friends home from school, the car collided with a tree on Meg’s side of the vehicle.  When Meg was being evaluated in the Emergency Room immediately after the car accident, she suffered a generalized tonic clonic seizure — the first of many to come.

Meg remained in a coma and on life-support for a week following her car accident.  When she finally awoke and studied her face in the mirror, all she noticed that was drastically different was big brown pieces of hair standing up at an odd angle on the left side of her head.  Meg’s mother gently explained that the physicians that treated her in the emergency department had to shave the left side of her head to monitor her intracranial pressure.  Meg was relieved that after a serious accident, all that had changed was her hair.  She didn’t know what was brewing inside.

Meg’s hospitalization after the car accident and traumatic brain injury was followed by a longer stay at a local rehabilitation center where she concentrated on physical therapy, occupational therapy, and speech therapy.  Because Meg’s brain injury was in her left temporal lobe, she had particular difficulty with short term memory and speech.  Meg states that ever since her accident, she’s had difficulty finding the right words during conversations and naming objects that used to seem commonplace.

Despite her major accident and injury, Meg returned to high school with her class in the fall of her sophomore year after a period of rehabilitation with determination and confidence.  Meg wasn’t able to participate in her beloved basketball any more — the risk of further concussions or closed head injuries was too great — but she was pleased to be back amongst her peers.  As a result of her injury, Meg required extra time on her tests at school and some extra accommodations for learning, but she did well in her courses and achieved her dream of acceptance into a nursing school when she graduated from high school.

And because epilepsy is never predictable and tends to strike at the most inopportune times, Meg had her first complex partial seizure when she was standing in front of a class of nursing students giving a presentation about a pediatric nursing topic.

Meg wrote about her first complex partial seizure on the website http://www.myepilepsystory.org:  “. . .all of a sudden, out of nowhere, my heart began to race—not out of nervousness, but more like I was running from a train and couldn’t get away. I kept trying to swallow, but my mouth was too dry. I had prepared for this presentation, but the words I was planning to use just weren’t coming out.

“I tried to take some deep breaths to relieve what I thought was nerves, but I couldn’t even gather the breaths. The scariest part was knowing how important it was to make eye contact with the entire audience during a presentation, but for 15 seconds I felt paralyzed and blankly stared, unable to look away from one side of the room. After what seemed like forever, I regained my composure and was able to finish the last minute or so of my presentation”

When the event was over, Meg was able to complete her presentation.  A nursing instructor who saw the event, however, approached Meg later and suggested that she see a neurologist.  Soon Meg was started on her first antiepileptic drug which eventually led to another, and another, and then a different one.  Meg tried a total of four anti epileptic drugs at their maximum doses prior to her decision to have surgery.  As her stress at school increased, her seizure frequency increased as well.  Though Meg was passionate about becoming an RN, she had to slow down in the pace of her studies because the medications to treat her seizures were affecting her memory and concentration.  With hard work, true grit, and true devotion to her chosen profession, Meg graduated as an RN one year behind the class that she started with, yet lightyears ahead of the grips of epilepsy.

After graduating from nursing school, Meg worked as a pediatric nurse in an outpatient clinic and then as a school nurse in an elementary school.  Though she loved interacting with children, Meg eventually moved from areas of direct patient care to phone triage because of her worsening breakthrough seizures.

Several years after graduating from nursing school, Meg became pregnant.  Despite taking escalating doses of antiepileptic drugs during her pregnancy, she delivered a perfect baby boy, who is now three years old.   The significant hormonal changes that characterized the period after Meg’s pregnancy caused Meg’s epilepsy to spin out of control.  Her seizure frequency increased, several more medications were unsuccessful and she was determined to be a candidate for a left temporal lobectomy.  When the local news approached Meg and asked if she would be willing to participate in a series of feature news stories following her through the surgical experience, she agreed.  Although she was nervous to allow cameras and the public to view her at her most vulnerable, she thought it was an important way to tell part of the real story of epilepsy to the general public.

Meg in the hospital prior to her epilepsy surgery

Meg in the hospital prior to her epilepsy surgery

Meg’s surgery has proven successful.  She will celebrate the two year anniversary of freedom from seizures this April.  Meg still takes high doses of three antiepileptic medications but the constant dizziness that she assumed was a medication side-effect prior to surgery is gone.  Meg is now also working as a nurse case manager for at-risk mothers in the Omaha area to teach infant care and help with the newborn transition.

In addition to doing her part to raise awareness about epilepsy, Meg hopes to help others that are experiencing seizures cope with their illness.  To do this, she started Camp YouCan, a summer camp for children with epilepsy in Nebraska.  Camp YouCan is a day camp where kids with epilepsy can come together to play and learn about how to cope with their illness.  Meg was able to coordinate donations from local organizations and businesses so that 24 children could attend last year and she is planning for a bigger camp with an overnight event this summer.

From a fateful afternoon car ride to a news story that touches thousands and a camp that can impact a child’s life forever, Meg has turned her tragedy into a multitude of triumphs.  The links to videos of Meg’s epilepsy surgery are attached below  — you may want to grab a kleenex.

Please pass it on.

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Meg with her parents

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Meg and her husband

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Meg gives a “thumbs up” while wired for an EEG

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Meg at Camp YouCan, a camp she founded to help children with epilepsy

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Guest Post: A Wilderness for Aidan

Not long ago, I received an email from a father of a little boy with epilepsy that caught my eye:

 I just discovered your blog. As father of a young boy fighting devastating epilepsy and a brother of an adult sister who has spent her entire life fighting seizures, thank you. I would be interested in writing a blog about taking our son on his first backpacking trip in the Montana wilderness, in spite of his intractable seizure disorder.

I replied to Mr. Long’s email and very soon after received the most touching description of what it’s like to parent a child with epilepsy that I’ve ever read.  I hope you will enjoy the following post as much as I did.

A Wilderness for Aidan

By Ben Long

Growing up in Montana should mean growing up out of doors. Instead, too much of our young son’s life has been spent inside, looking out the sealed windows of hospitals.

In 2004, my wife, Karen, and I had a boy, our first child. We took him camping trip at four months. A challenge in those days was changing a diaper by flashlight in a tent when it was below freezing.

Aidan grew up smart and curious and fun loving, with no sign of health problems beyond the hay fever he inherited from me.  We camped, hiked, skied and canoed because, in our family, being outdoors is what we do.

I particularly love hiking overnight into the backcountry. When I was growing up, my dad took me backpacking every summer. Even before Aidan was born I started planning his first overnight hike.

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But those plans were shattered on Oct. 28, 2008, when Aidan was 4. Aidan tipped off a kitchen stool and slammed into the floor, his lips blue and a trickle of blood from the corner of his mouth. I thought he had choked on something and called 911, but the ER doctor said Aidan had suffered a seizure.

It was the first of many seizures, and many hospitalizations. There are no pediatric neurologists, let alone epileptologists, in Montana. So in search of answers we traveled to Seattle, then to specialists at Denver, Cleveland and Chicago.

Aidan’s epilepsy defies labels as it defies treatments. We’ve failed a dozen medications, have spent three years on the ketogenic diet, and invested in several nontraditional treatments. The disorder seems particularly cruel in that Aidan thrived so in his early years. His smart little brain seems at war with itself.

Aidan has several forms of seizures. They come at different times, different severities, seemingly without pattern.  Aidan is also prone to bouts of ‘non-convulsive status epilepticus’ – which essentially means non-stop seizures that are invisible but render him immobile for days, even weeks at a time.

Because of these status events, Aidan has been life-flighted from our Montana town to urban hospitals five times between age 4 and 7. Aidan has spent month after month in intensive care units, scalp wired to EEG electrodes and receiving drugs and fluids intravenously through a PICC line in his armpit.

In one of the last extended hospital stays, the doctors tried to get control of the seizures by dropping Aidan into a medically induced coma. This went poorly. Aidan’s muscles shriveled before our eyes as he lay motionless day after day, fed through a tube up his nose, breathing with hose down his throat. Finally, when he had pneumonia in all four lobes of the lungs, the doctors called the brutal experiment to an end. Seizures, if anything, were worse than ever, as was our sense of helplessness.

The hospital sent us home with the phone number of the local hospice and a pamphlet on “letting go.”  We wheeled Aidan out of the hospital in a borrowed wheelchair, and took him home to learn to walk and talk again.

That was two years ago.

The seizures come in waves and have taken a tremendous toll on Aidan, yet he is still the same, remarkable child as a young boy as he was as a toddler. He still loves to listen to books and then act out the parts. He loves Legos, building castles and spaceships. But the seizures and drugs leave him exhausted, blunted, battered and frustrated.

We have lost a tremendous amount, but to me, the worst loss is the sparkle in Aidan’s eyes. That sparkle was once a part of every waking moment; now it’s only there on his better days.

One evening during one of Aidan’s better periods, Karen and I spoke of things we still wanted to do. I said I still wanted to take Aidan backpacking. She insisted we do so.

 KMN and Aidan Stanton Lake low rez

It was the shortest hike we’ve done, but also carefully planned. We wanted to get away into true wilderness – no cars, machines, cell phones — just a million acres of pristine nature. Yet we had to be cautious. If disaster struck, I wanted to be able to throw Aidan over my shoulder and carry him back to the truck.

We picked a lake two miles from the road in the Great Bear Wilderness. As it turned out, it was in the shadow of Great Northern Mountain, a peak Karen and I had climbed on our first hike together exactly 20 years before.

We pulled our gear out of storage, shook out the dust and stuffed our backpacks full.  The night before we departed, I lay awake wondering if the entire idea was a vain, dangerous mistake.

Would the hike stress Aidan’s physiology?  Would excitement or lack of sleep trigger another bout of status?

In the morning, we decided to go for it. We loaded our packs (Aidan carrying his lunch, some water and his favorite stuffed monkey) and hiked into the forest.

The packs were heavy and my muscles unused to carrying a load up a mountain trail. But the lake was beautiful and we enjoyed it in solitude, loafing, fishing and watching the shadows give shape and form to Great Northern.

“Dad?” Aidan asked as I pitched the tent, “can I watch Netflix on the iPad?”

“Sorry buddy. I didn’t pack it and it wouldn’t work here anyway.”

Instead, we piled up rocks on shore and caught and released little trout. The evening was long and mild. In the morning, after sleeping snuggled in the little pup tent, Aidan danced the happy camper dance around the campsite.

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Part of what I like about backpacking is the physical challenge. It teaches one to endure burden, to walk through pain. The strain can be great, but at the end of the trail you shed the heavy pack and feel lighter than air as you enjoy your destination.

Epilepsy, for our family, isn’t like that.  We are learning to bear pain, to carry a burden of broken dreams. But the destination is so far beyond our reach.  The best we can do is reach out to family and friends to share the burden, share the rugged path Aidan is on.

We still believe in a day when children like Aidan and families like ours can leave this burden behind and more fully enjoy the beauty of the world around us.

That’s why we support Citizens United for Research in Epilepsy and the Doose Syndrome Epilepsy Alliance.  We hope you will too.

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morning camp dance

Please pass it on.

Carrie and the Gift of Perspective

If you believed the stereotypes, Carrie would be far from what you would expect in a typical patient with epilepsy. She is a successful professional who works as an associate director of an internship program at DePaul University, a mother of a happy, healthy little girl, an activist who volunteers with political campaigns, and still someone who lives with intractable seizures.

“When I tell people I have epilepsy, it feels like they are seeing another side of me.”

But through Carrie’s successes, achievements, and major milestones met, the “side” of her that has been occupied by epilepsy remains ever-present.

Carrie’s seizures started when she was 11 years old. First they appeared as what her parents described as “staring spells” combined with an odd nervous sensation that led to a sense of drowsiness.  Concerned that she was having fits of anxiety, her parents brought her to a psychiatrist for evaluation.  After determining this was not simply a case of anxiety, eventually an EEG was performed and she was diagnosed with a “seizure disorder.”   Carrie was started on the first of a long series of antiepileptic medications to treat her seizures and within a couple of years, received the official diagnosis of epilepsy and told by various doctors “you might just grow out of this”.

Over the next 25 years, Carrie tried over ten antiepilepsy medications, all with a different kaliedescope of side-effects and temporary successes.  Although her seizures are so mild that no one can tell she’s having one except herself, when she was 25 years old, she had her first grand mal seizure and it seemed as if her whole life changed.  Carrie realized that her grand mal seizure occurred after a period of high stress and little sleep.

“After that point and until this day” Carrie said, “I never compromise on sleep.  When my daughter was born, my husband did all the night time feedings.  If I can’t fall asleep at night, I have to sleep later in the morning to make sure that I’ve slept a full 6 hours.”

“I know that if I were to have a grand mal seizure because I was sleep deprived and it was something I could have prevented, it would be devastating.”

When Carrie was 29 years old, she had a temporal lobectomy and dreamed that she would one day be free of medication and be free of seizures.  Several years after the surgery, she is on the same amount of medication that she was taking prior to the surgery, but the number of simple partial seizures she was having dramatically decreased from 10-12 each month to just  3 – 5 each year.  Carrie feels like this is some degree of success, even if it isn’t the ultimate goal of seizure freedom.  In the end, Carrie’s walk with epilepsy has given her a very positive perspective on life in general.

“Epilepsy has given me a stronger appreciation of life and has made me feel more empathetic for people with worse diseases.  When I find out that someone has something like multiple sclerosis, I know that it affects their entire life and their entire family just as epilepsy has affected mine.  My epilepsy could be a lot worse.  It’s not like I’m dealing with cancer.  I think I have a more grateful attitude as a result of managing this disease and the risks it presents.”

Carrie states that her experiences with seizures have also given her tremendous appreciation and gratitude for the health and happiness of her 3 and a half year-old daughter, Norah.  Although Carrie had to stay on her seizure medication throughout the pregnancy to reduce the risk of having a seizure and potentially harming the baby, Norah is active, intelligent, and perfect.  Norah has had three complex febrile seizures associated with high fevers and viral illnesses in her first few years, putting Carrie on “high alert” to watch her daughter for more seizures any time she is ill.  With her history and the recurrent febrile seizures, Carrie knows that her daughter is at increased risk of developing epilepsy in the future, but she prays that the stars will align on her side this time.

Perhaps most apparent and above all, epilepsy has bred resilience and strength in Carrie beyond all else.  When I asked her what message she’d like to convey to others touched by seizures, Carrie said, “Epilepsy is part of me, but not all of who I am.  I’m not going to let this stop me from doing what I want to do.”

When I hung up the phone after talking with Carrie, I realized that short of freedom from seizures, Carrie found what we all hope for.  The ability to own a disease that has potential to overtake us is invaluable.  Carrie’s positivity, gratitude, perspective, and fortitude were some of the keys to her success.

Again I remembered that the more we talk, the more we understand.

Please pass it on.

Norah and Carriie483498_10200210628094853_1712029223_a

Brent, a Notebook, and the Power of Family

I was supposed to meet Brent for lunch last week so he could share his story about living with epilepsy for the One in Twenty Six blog.  We were both looking forward to meeting at 1:00 in the afternoon.  Then, at 11:49, Brent sent me this email:

I have I Kristin I now no to that no now that no no hard not met need new

Confused, I sat at the spot where I was working at my kitchen table and wondered.  Brent was normally articulate and brief in his email exchanges.  Was this a new creative spam email or some type of virus?  Or was Brent playing a joke on me?  Worse yet, was something wrong?

I got my answer a few minutes later.  In an email that I later learned was written by a co-worker, Brent explained his previous scattered message:

I have to cancel our meeting today at 1pm – just had a seizure and am going home.

My heart sank.  I knew that Brent continued to struggle with partial seizures and grand mal seizures despite taking several different anti epilepsy medications.  He had had a grand mal seizure at his office, where he works in internet marketing at a telecommunications company.  Unfortunately, events like this were not unusual for him.

When Brent and I were finally able to meet this week, he brought two notebooks with him.  One notebook was filled with notes detailing his experiences with epilepsy, the other notebook was filled with lists and notes that Brent’s wife and family members used to help re-train his memory and teach him to speak again after his left temporal lobe surgery in 2009.  The second notebook sent a chill up my spine.  I could see Brent cringe and his eyes well with tears and he flipped through the pages filled with notes from a different era.

Words were written in big, block letters with just a trace of feminine curvature in crisp blue ink on page after page.  One of the early pages was titled “YOUR FAMILY –>”  and followed by a list of the family members and animals that lived in Brent’s home.  Another page was adorned with a life-sized sketch of a human hand and labels pointing to different parts of the hand.  Arrows pointed out “Knuckles.”  “Fingernail.”  “Palm.”  Another page of Brent’s notebook strayed from the business-like block letter approach and was decorated with a thick bubble-letter message from a devoted wife.  “Julie loves you.  Brent is awesome.”

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Brent showed me one of the last pages of his notebook with averted eyes and said, “you can read this.  I can’t read it or I’ll get upset.  It’s a promise I made to myself when I was in the hospital after my brain surgery.”

Touched that he would share this with me, I read a message written in shaky handwriting.

Brent, you’re f****ed up.  You’re sick now but you’re going to get better.  

One day soon you’re going to get out of this place and you’ll be able to ride a motorcycle again!!!

I looked at Brent after I finished reading and felt the disappointment brewing deep from within.

“This upsets me because I still haven’t fulfilled my promise,” he said.  “But I still hope I will some day.”  Because of his persistent seizures, Brent’s primary mode of transportation around town has been via bicycle or with his wife, parents or other family members who live nearby.  Brent is quick to point out that he is lucky to have parents, a sister, a wife, and friends who help him with transportation and help him when epilepsy strikes, but he longs for the day that independence will be his again.

When Brent describes his history with epilepsy, he always begins with the year before the seizures began.  “The period from 2006 – 2007 was the best time of my life,” he proclaims, as a smile dances across his lips and his eyes glaze over with pleasant memories.  “I married my wonderful wife, Julie, in 2006 and in 2007 and I won a national award for online journalism in the Outstanding Use of Digital Media.  In 2007, Julie and I bought a 1988 van and put a futon in the back and drove to Yellowstone National Park for our honeymoon.  We had a fantastic time.

“On New Year’s Eve 2007, Julie and I were in Florida and we were planning on going to the Outback Bowl the following day.  Out of the blue, I felt horrible — no, worse than horrible.  I sat with my head in my hands the whole time at the Outback Bowl because I felt so bad.”

Brent and Julie flew back to Wisconsin and later that week Brent saw his doctor and he was diagnosed with the “stomach flu.”  Several days later, Brent and Julie were at home when Julie heard a thump and found Brent splayed out on the floor having a tonic clonic seizure.  When Brent was taken to the hospital that night, he had recurrent generalized seizures with almost no break in between. A spinal tap confirmed the diagnosis of viral encephalitis.  “I felt like I was dying that night,”  he remembers.  Although the details of that long night are murky in Brent’s memory, he remembers waking up in between every seizure, looking his wife in the eyes and telling her that he was dying but he loved her.

Brent states that the infectious disease physician on call that evening told his wife that he had a 50% chance of living through the illness.

Despite the dire predictions, Brent was discharged from the hospital three days later.  On the way home from the hospital, Brent convinced his wife and his friend that he’d like to stop for food.  Not long after they sat down to enjoy some chicken pot pie (“which will forever be known in my family as seizure-pot-pie,” Brent states with a smirk) he succumbed to a seizure and was promptly brought back to the hospital.  And so began the litany of hospitalizations and emergency room visits, medication trials and switches, and a life pock-marked by epilepsy.

As a way to cope with uncertainty, Brent has developed a healthy sense of humor about epilepsy.  At the end of our time together, Brent listed his “best seizures” by finding something memorable in some of the most fearful moments of our lives:

  • “Once I had a grand mal seizure at a movie theater just before my wife and I were able to go to the movie.  We got our money back.  I thought that was pretty awesome.”
  • “I had a seizure at a furniture store and ended up buying the couch that I fell on.  As I woke up, the salesman was blessing me as if I had demons.”
  • “One time I had a generalized seizure at Brat Fest in Madison (a big festival where thousands of people come and eat bratwurst.)  My friends were with me and formed a protective circle around me so no one would see or could get near me and waited for the seizure to end.  I was pretty touched by that.”
  • “I had a seizure at PDQ once and someone stole my phone when I was unconscious.  That still makes me mad to this day.”

Through his frustration, Brent continues to find a positive spin on his life with epilepsy.  “It’s made Julie and I grow closer, it’s given me perspective about the things that really matter.  I don’t get worked up about the little things any more.  I  have tremendous support from my wife, my family, my employer, and friends.  I couldn’t have done this without them.”

Brent sent me one last email last night that I think sums his perspective up perfectly:

” I always want to tell all the others out there with epilepsy or any other challenges, as much as you think your future has failed it hasn’t. People will surprise you and I don’t think things happen randomly for a reason but I do believe things do happen for a reason.”

I believe Brent will keep his promise to himself and ride a motorcycle again some day.

All in good time.

Please pass it on.

brain-cake

Brent’s co-workers made him a brain cake before his brain surgery

brent-julie-dog-day

Brent and Julie have established a dog wash and fundraiser for CURE called “Dog Days” that has raised over $8000 for epilepsy research!

out-of-the-darkness

Brent’s first day walking around Madison after a long period of depression and despair after epilepsy surgery felt like he was “coming out of the darkness.”

Christine

I have known Christine for what feels like a long time.  Our children, who are now eight years old, used to attend preschool together.  I saw Christine at various birthday parties, classroom celebrations, and milestone events over the course of three years when my son and her daughter spent their days at the bright, angular school with halls filled with the music of children that buzzed with laughter and joy.

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Even though I’ve had countless conversations with Christine at parties and preschool events, it wasn’t until I posted the first entry to One In Twenty Six revealing “My Story” that I heard about her history of seizures.  Christine posted a comment on the blog and wrote, “. . .while I have not had a seizure in over 15 years, my middle-, high school, and early college years were plagued by them. Monitoring sleep, food intake, and stress levels are just second nature now, but auras are always scary reminders that there’s a sleeping electrical storm that could break at any time.”  Christine states that the week she saw the post, she was drawn to reading the blog because she recently had an interaction with her colleagues at the University of Wisconsin, where she teaches technical writing.

After hearing a colleague recount a story where he suddenly lost consciousness and fell off his bicycle, Christine suggested that he should be evaluated for possible seizures.  When the colleague scoffed, Christine pressed on, adding that she had an intimate knowledge of how unpredictable and variable seizures can be, since she had lived with epilepsy for many of her adolescent and adult years.

Christine shared her story with me while we had breakfast on a grey Monday morning that promised only more cold, slush, and snow. “After I told the group about my history of epilepsy, the room suddenly became silent,” Christine remembered, the irritation visible in the smoldering fire of her dilating pupil.  “No one knew what to say. The stigma associated with seizures is still very much there,” she said.  ” Something’s got to change.”

Christine’s journey with epilepsy began when she was an active middle school student at a parochial school in northern Michigan.  Never one to be idle, she was involved in a myriad activities and pushed her body to the limit.  Christine first noticed events where she felt an overwhelming sense of sleepiness that she couldn’t shake even if she was able to get adequate rest.  Then she started to notice paroxysms of involuntary movement of her right hand, evidenced by sudden streaks of irregular writing across her papers at school where her hand jerked out of voluntary control and was suddenly guided by the brewing electrical currents within.  Eventually, when Christine was working her hardest to help prepare for the middle school graduation ceremony, she succumbed to a grand mal seizure.  Her diagnosis of epilepsy ensued and she began treatment with Tegretol.

Christine reports that once she started and increased the dose of her antiepileptic medication, she went from being a straight-A student to “sleeping through a year of high school.”  She was no longer able to participate in a variety of activities because the medication side-effects were too great.  Her grades suffered significantly as well.

After muddling through a sleepy 18 months on Tegretol, Christine was switched to Depakote, which allowed for fewer side effects and better seizure control.  She noticed that she had to exercise almost all the time to avoid gaining weight while taking Depakote. Early in the initiation of Depakote therapy, Christine was warned by her physician that while she was on antiepileptic medication, the risks of potential birth defects would likely preclude her from ever having children.  Too young to worry about it too much at the time, Christine took her medication every morning with hope in her heart that her seizures would one day be a part of the past.

In some ways, Christine got her wish. When she went years without seizures or auras in college, she talked to her neurologist about weaning off Depakote.  She was able to become free of medications before she became pregnant and delivered her first child.  Emmy was perfect, with sandy blond hair, chocolate brown eyes and an expressive smile that could light up the darkest room.  Her daughter’s life seemed unmarred by her mother’s history of seizures.

Then when Emmy was three, Christine and Emmy were walking out of the library together one spring afternoon.  They were smiling at the warming sun and looking forward to the day they would enjoy together.  Suddenly, Emmy’s hand slipped out of Christine’s hand.  Christine turned around and found her daughter spread out, quaking, unconscious, and helpless on the sidewalk.  Knowing that she needed help, Christine had no choice but to leave her daughter alone for a moment while she ran inside to call for an ambulance.

Emmy’s seizure was not associated with a fever or an illness or any of the typical culprits that may lead to benign seizures in children.  In discussion with Emmy’s physicians about use of possible antiepileptic medications to prevent future seizures, Christine states that she was “appalled to find that many of medications that we use in children today are very same with the debilitating side effects that were used for me twenty years ago.”  Currently, Emmy is not on any medications and is doing well, but Christine reports she lives in fear of the day that things may change for both of them.

Christine describes her experience as having a “brush with epilepsy” and states that she has been fortunate to not have seizures and medications affect her everyday life.  Still, while the grey changed to silver outside on a Wisconsin Monday morning, I could see slivers of how a history of seizures and years of mind-numbing medication can haunt you like a ghost forever.  Christine admits that she still monitors her sleep and stress levels diligently.  While she used to be “on the path where she needed to be in control of everything,” now she has learned to let things slide.  She also admits that she dreads the hormonal changes in life more than most women.  Where puberty and menopause are headaches to some, they may mean resurgence of seizures to women like Christine and Emmy.

Christine looks forward to the day when she can talk about epilepsy in a room full of colleagues and not be met with awkward silence.  The more we talk, the more we understand.  Please pass it on.

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Photo source: http://the-second-half-of-my-life.com/2010/09/16/mothers-daughters-9/