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.

http://www.amazon.com/Sacred-Disease-My-Life-Epilepsy-ebook/dp/B016X2CMOA/ref=sr_1_1?ie=UTF8&qid=1446428447&sr=8-1&keywords=the+sacred+disease

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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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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.

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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.

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 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.

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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.