Blog #87: A FAMILY DEALS WITH UNRECOGNIZED EPILEPSY (Excerpted from Dr. Lance Fogan’s novel, DINGS)

                       

                                                Chapter 21

“Hurry, Conner. We’ll be late!” I leaned against the railing downstairs. It was two days since his convulsion. Today was his first day back to school. I barely heard any sounds and murmurings from the street or even from inside my own house as I inventoried my challenges—our family’s growing problems. It was obvious that things had not been easier since Sam came home.

Conner hopped two-footed down the stairs. “Okay, Mom! I’m ready. I can’t wait to tell everybody what happened!” He stopped on the bottom step and looked at me. “Mom? Mommy? I’m ready. Let’s go!”

Echoes and then words crept in. Uh-oh. “Okay. You want to tell everyone about the…the seizure? Really?” I pushed my body away from the railing. He didn’t seem to be tired or to have any of the side effects Dr. Choy had mentioned. Conner even took the Dilantin with the whipped cream without any fuss this morning.

“Oh yeah! I had a CT scan. Boy. Wait ’til I tell everybody. They’ll think it’s so cool!”

His grin and his twitchy eyebrows compelled me to return his smile. I sighed and followed him into the garage. “’Bye Sam. ’Bye Madison. I’ll see you later.”

***

Prior to today, my mind had barely registered this short drive to his school despite having done it so often. Now, something compelled me to see every detail that had formerly been only vague and familiar. I wanted the past to regain me, to go back to that time before Conner’s convulsion had forced its ugliness into our lives. This feeling—illogical and an impossible attempt, I knew, to make these past few days disappear—reminded me of that passage from Fitzgerald. How long ago was it? My college roommate, Kathy, and I read and re-read and talked about Fitzgerald’s last lines in The Great Gatsby. Something about how we were all constantly going against currents yet still getting swept back into our pasts. That was exactly how I felt now, what I wanted now. And these streets—dependable sights of my former world—were my anchor to that past: the scooters and bikes that were in driveways and that laid on lawns. And that large yellow dog, with its long pink tongue that dangled from the side of its mouth as it watched from a front stoop most mornings, a fashionable brown-and-blue-striped handkerchief tied around its neck like a cravat. That sight always made me smile. He was obviously a member of some warm family. A calico cat perched atop a brick pillar; mothers chatted and pushed covered strollers that enclosed infants and toddlers bundled up against the crisp early-March air.

But today I would tell the school about Conner’s…Conner’s trouble. I swallowed hard.

“Mom, why are you going here? We should have turned back there!” Conner’s yell pierced me from the back seat.

I had missed our turn. “Oh, wow, I’m sorry. I was just in my own little world, honey.” Several minutes later, we coasted to a stop. The crossing-guard—a bald, older man with white stubble on his chin and a paunch protruding comfortably through his open, luminous lime-trimmed vest—stood in the middle of the crosswalk. He smiled in recognition and held up the red stop sign.

I stared. He looked suddenly decrepit and frail. I made myself smile back before I turned my head to watch the boys and girls crossing in front of me. Their sweet, clear-eyed, cheery faces chattered away as they passed in front of my SUV. I drummed my thumbs on the steering wheel. How many of these youngsters had seizures? One in a hundred, Dr. Choy had said. Had any of them gone through that tortured jerking and groaning and biting and wetting and…?

The guard walked back to the curb and waved us on.

I raised my hand in acknowledgment and then pulled into the school parking lot around the corner. “Okay, we’re here. I’ll go in with you. I need to talk with Mrs. Dorsey.”

“What for, Mom?” Conner unclipped his seat belt and climbed out of the SUV.

He had become very conscious of referring to me as “Mom” instead of “Mommy.” I had pangs of regret every time he used that more mature moniker, but he still called Sam “Daddy.” That was sweet.

“I told you. Dr. Choy said that I should tell Mrs. Dorsey about—about what happened a couple nights ago. Hey! Don’t forget your backpack!”

He reached for his pack. “Who is Dr. Choy?”

“He’s the doctor at the hospital who took care of—”

Conner was no longer listening. He had spotted two of his friends standing by the flagpole and had run to join them.

I sighed. Sparrows flew off branches above me in a dark, chirping wave when I slammed the door. I trudged after several groups of chatting, laughing children heading into the school. I smiled when I spotted my son with his friends; then they disappeared into their classroom. The corridor was empty. I stood and stared where he had just been.

I turned around and was confronted by a collection of staff photos that was displayed on the wall. All of those smiling expressions assaulted my emotions and exaggerated my insecurity. I recognized several faces from that SST conference months back. The reflection in the glass showed tired and puffy eyes. My short, auburn hair hung limp around my neck.

I squared my shoulders and approached the administration desk. A secretary with too-black hair and who appeared to be in her mid-fifties was rifling through a drawer in a filing cabinet behind a desk. She turned and looked at me. Our eyes met before her attention returned to the cabinet. The other secretary sat at her desk. She was younger and pretty, with a mane of flowing red hair. A small diamond ring sparkled on her left hand.

The younger woman looked up. I cleared my throat. “I’m Sandra Golden, Conner Golden’s mother. I’m here to meet with Mrs. Dorsey.”

“Do you have an appointment?”

Her manner unsettled me. She barely smiled and her eyes were unreadable. “Uh, yes, I do. I know I am early. I just dropped my child off. She’s expecting me. She said that she’d meet with me after her first-period class.”

The redhead handed me a stick-on “visitor” tag. “Please sign the visitor book. You can wait right over there.”

I took a seat in the reception area and placed my purse next to my feet. I smiled when I saw a two-year-old issue of Junior Scholastic on the table. I flicked through it. I remembered the subscription I had during junior high. The next thing I knew, Conner’s teacher was behind me telling the secretaries that she would be in the conference room with the parent of one of her students.

I sat up, rubbed my eyes and rose to greet her. “Oh, Mrs. Dorsey, I must have dozed off.”

We shook hands. She gave me a strained smile. I glanced down at my soft, brown leather jacket over my pink blouse, tan slacks and brown slip-on shoes. I felt a little haggard; she must have seen that. I pulled in my stomach.

“Let’s go where we can talk. Mr. Backus, our art teacher, is taking over my class this period. How are you? I was wondering what was up when I got your message. It sounded important.” We walked through the administration area to the conference room.

The teacher opened the door. A set of fluorescent bulbs automatically flickered on and flooded the room with cold-blue light. I recognized it as the room in which I had met the Student Study Team.

Mrs. Dorsey closed the door behind us and pulled out two chairs. We sat next to each other at the corner of the conference table.

I shivered and rubbed my hands together. I was glad I had worn my jacket.

“I’m sorry that the room is so cool, Mrs. Golden. It’s like this when no one has used it for a while.”

I nodded and smiled. I leaned forward and blinked rapidly as I began to tell Mrs. Dorsey why Conner wasn’t in school yesterday. My voice was low and tremulous as I described his convulsion, the E.R. visit and his anti-seizure medication.

I registered the genuine shock in Mrs. Dorsey’s voice when she finally spoke. “Mrs. Golden, I’m so sorry! Certainly, I will keep an eye on Conner. Our school nurse will, too. It’s really good that you let us know,” she gushed. We appreciate it. I mean, I have taught other children with epilepsy before, and we—”

“Conner does not have epilepsy, Mrs. Dorsey. No one said that he has epilepsy! He had a seizure. That is all! The doctor said that it’s not epilepsy.” My stomach churned; I tasted sour coffee in the back of my throat. I glared into her green eyes. How dare she say that Conner had epilepsy! I couldn’t let Conner get that label: “epileptic.” I would not let anyone even think it. It had come to this.

I was suffering and, oddly, it was a shameful feeling. I shouldn’t have sunk to such depths. I couldn’t help how I felt then—illogical, but it was the truth. Illness had come to my family. It was going to be up to me to be strong and to support my son.

Mrs. Dorsey touched my arm and lowered her head. She said in a near-whisper, “No, of course not, Mrs. Golden. I’m not—I’m not a doctor. I am sorry. I didn’t mean—”

I exhaled, suddenly embarrassed and guilty for my outburst. She truly was sweet. “No, no, I’m sorry Mrs. Dorsey. You did not deserve that. I’m not—I shouldn’t have—it’s just—” I bent my head into my cupped hands as uncontrollable sobs racked my body.

Mrs. Dorsey put her hand on my shoulder. “I’m sure everything will turn out all right for Conner. Please don’t cry. Please, Mrs. Golden. You’ll see.” I looked up and saw tears welling in her eyes. Dark spots appeared on the emerald-green scarf around her neck.

Mrs. Dorsey grabbed a wad of tissues from a pink box on the table. She gave some to me and kept the rest. We blew our noses, leaned back in our chairs and looked at one another. Then we laughed, both dabbing our eyes and cheeks. For these moments, the shared emotions melded us.

I said softly, “Look at us! Thank you, Mrs. Dorsey. I am so sorry. I have to go, now. I’ll talk to you later. Thank you for your concern about Conner.” I stood up. I had to get out of there and be alone.

The teacher reached over and placed her palm over my hand. “No apology necessary. I understand. Again, I appreciate your telling me what happened to Conner,” she added as she looked up at me. We’ll keep an eye on him.” Then she stood.

I grabbed my purse and hurried out of the room.

 
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #86: What We All Knew Is Now Documented: Stress & Missed Sleep Trigger Seizures

            According to a report presented at the 69^th Annual Meeting of the American Academy of Neurology, stress was found to be the most common trigger of seizures. Stress was linked to 37% of seizures in a study population. The research was led by Gregory Krauss, MD, Professor of Neurology at Johns Hopkins University and is summarized in the June 2017 issue of Neurology Reviews (www.neurologyreviews.com). Dr. Krauss and colleagues used an Apple Watch app called EpiWatch to track seizures over ten months. The app was created using Research-Kit, which was designed by Apple to aid researchers to gather this data.

            When the 598 participants perceived a seizure aura they would open the app. Then EpiWatch recorded heart rate and body movements for 10 minutes. The app asked the person to perform tasks to test responsiveness. The patient was asked to record seizure type, aura, loss of awareness and possible seizure triggers. The app also helped track medication use and drug side effects.

            Forty percent of the group tracked a total of 1,485 of their seizures. Information about the person’s opinion of a possible seizure-trigger was also tracked. The most common reported trigger was stress, linked to 37% of seizures. Participants also identified lack of sleep as a trigger for 18% of the seizures, menstruation for 12% and over-extension of their activities for 11%. Other reported triggers included diet (9%), missed medications (7%), and fever or infection (6%). Seizure triggers did not vary by the type of seizure.

            Those participants who worked full-time reported stress as the trigger in 35% of their seizures compared with 21% of seizures in part-time workers. The investigators found that unemployed people reported stress as a trigger in 27% and disabled people reported stress was a trigger in 29% of their seizures. Missed medication was a trigger in 40%, especially in younger people ages 16-25 years, while among older people ages 26-66, thirty-four percent reported missed medications as a trigger.

            The investigators hope to be able to use wearable technology to predict oncoming seizures.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #85: More on Death in Epilepsy: What to Do

            Among the 84 blogs I have posted at LANCEFOGAN.COM since 2011, three (#13, #57 and #68) have focused on “sudden death in epilepsy” (SUDEP). Too often, physicians fail to discuss SUDEP with their epilepsy patients, their families, and their caregivers because physicians claim that they did not want to impose unnecessary fear. Other physicians argue that SUDEP disclosure could aid in improving medication compliance and improved health-life-style compliance. Below are suggestions to minimize SUDEP.

            The cause of SUDEP remains unknown. Patients with epilepsy are 24 times more likely to suddenly die compared with age-matched controls. SUDEP is responsible for 2 to 18% of epilepsy-related deaths and is the most common epilepsy-related cause of death in patients with poorly-controlled seizures. Eliminating, or at least minimizing, convulsions is the goal because that has been shown to reduce SUDEP risk. ¹

            A total of 64 patients with long term epilepsy completed a survey that was presented by Lucretia Long, MS, RN, CNP, at the 69^th Annual Meeting of the American Academy of Neurology. All participants felt it was their right to be informed about SUDEP. A third of patients admitted disclosure frightened them but they still believed it their right to be informed. SUDEP is most likely to affect those with night-time tonic-clonic seizures that are poorly controlled. These individuals believed that SUDEP disclosure would benefit them by encouraging them to be more medication-compliant. Additionally, disclosure would encourage them to avoid factors that lower seizure threshold (less sleep, alcohol and illicit drug use). ²

                Most SUDEP occurs in bed where the patient is sleeping. While medical support, even within 2 minutes following a convulsion, doesn’t always prevent SUDEP, evidence supports that death is less likely when someone can rapidly stimulate or reposition the patient. ³ Consider alert monitors such as devices like baby monitors that can transmit unusual sounds coming from the patient’s bedroom that would alert others to attend to the patient as soon as possible and conceivably save lives.

1.  Dworetzky A. Gaining Perspective on SUDEP. The new guideline. Neurology 2016; 88: 1598-1599
2. Williams GS. Neurology Reviews. June 2017, page 13. 
3. Devinsky O, Hessdorfer DC, Thurman DJ, et. al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol 2016; 15: 1075-1088. 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #84: A FAMILY DEALS WITH UNRECOGNIZED EPILEPSY

Excerpted from Dr. Lance Fogan’s novel, DINGS

Chapter 20 (continued): Part II

That evening I stood in the doorway of the kids’ bathroom and watched Sam tell Conner about the anti-seizure medication. “Conner, the doctor said that you need to take these Dilantin capsules or you could start shaking again.” Sam forced a hesitant smile, gauged Conner’s response and his expectant face, and continued, “So you need to swallow these capsules. You have to take one of these smaller ones with a drink of water every morning. Then, you have to take this bigger one—this one with the red stripe—every night before bed. We’re going to start with the bigger one.”

“No! It’s too big, Daddy. I won’t! I can’t swallow that!” A vein throbbed in Conner’s neck and his eyes brimmed with tears. He kicked the lower cabinet door under the sink. “I won’t do it!”

“Conner, stop that right now! I am not going to argue with you about this! You’re going to take this medicine,” Sam ordered. “Here’s a glass of water. Put the capsule in your mouth and swallow it with some water. It will go right down. Open up.”

It was difficult to watch them, but I didn’t butt in.

I saw Sam’s hand tremble as he placed the capsule on our son’s swollen and discolored tongue. Conner wrinkled his nose and took a sip of water from the glass. He immediately started to gag.

“Here! Swallow, Conner! Hold your head over the sink!” Sam’s attempt at self-control was pathetic. He was about to lose it.

Conner retched a couple times and spit the capsule out with the water. He sobbed, “I can’t swallow it! I’ll choke!”

Sam grimaced. “Come on, Conner,” he said as he retrieved the capsule from the sink. “You can do it. Try again.” The boy began to cry even harder and kicked the cupboard again. “Stop it! Stop kicking!”

He grabbed Conner’s arm. Sam’s face blazed with fury.

I unfolded my arms and moved forward. “Hold on, Sam! Sam! Stop!” Conner’s screams muffled my protestations.

“Ahhhowwww! You’re hurting me! Stop it, Daddy! Stop it! You’re hurting me!”

“Sam! Sam, enough! Let me try. You wait downstairs. Conner and I will get it down. Go ahead. I’ll be down in a minute.”

Sam dropped Conner’s arm and shook his head. “Okay. Yeah, I’ll go downstairs. I’m sorry, Conner.” He handed me the capsule, turned on a military heel and left.

Conner sobbed, “Owww. Daddy hurt my arm, Mom!”

“He didn’t mean to, honey. He didn’t mean it. Come on. I’ll help you take it.”

“I won’t t-take it! It’s n-not fair!” He screamed between sobs. “Why do I have to t-take that pill? It’s too big! I’ll ch-choke!”

“I know, Conner. It’s hard to do new things sometimes. But it’s very, very important that you swallow this pill.” At that moment the tune from Mary Poppins, “A Spoonful of Sugar,” sprang into mind. “Do you think that if I put it in some ice cream, or maybe chocolate milk, you’d be able to swallow it? I think it would be a lot easier. Let’s try that, okay?”

Conner’s demeanor immediately softened. I flashed him a smile. I should have asked Dr. Choy to give us a liquid form of the Dilantin if there was one. Conner would have to swallow this tonight, but if he couldn’t get it down I would call Dr. Choy.

He sobbed a couple of times and wiped tears with his pajama sleeve.

“Let’s go to the kitchen and put the capsule in some chocolate ice cream.” I took his hand and we went downstairs.

“Did he take it?” Sam called. He was sitting on the couch in the den, holding a glass half-filled with an amber liquid. An open whiskey bottle was on the coffee table. “I’m sorry that I grabbed you, son. Forgive me, Conner?”

“Yeah, Daddy, but you squeezed my arm real hard,” he answered as he wiped his nose with the sleeve of his free hand.

“He’s going to take it with chocolate ice cream.” I said with a grin and began to sing, “A-spoonful-of-sugar-la-da-da-da-da-da.” Conner sat in his usual seat at the kitchen table. He had a sheepish grin. I got the ice cream out of the freezer and scooped some into a bowl. Sam walked in, the newspaper clenched in one hand and the glass in the other.

I put a large spoonful into his mouth as he mumbled, “Whipped cream?”

“Whipped cream! What a great idea, Conner! Sure.” I took the can of whipped cream out of the refrigerator and shook it. “Here’s what we’ll do: swallow that chocolate spoonful, and then we put the Dilantin capsule on your tongue. You open wide, I’ll squirt the whipped cream into your mouth and you swallow it right down. Okay?”

A broad grin appeared and he nodded.

“Open wide.” I put the capsule on his tongue, tilted the can and depressed the nozzle. A white mass hissed and billowed as it squirted into his mouth. His cheeks puffed out. He swallowed.

“Open.” I peered in. “It worked!” I looked at Sam. We all laughed.

“Hey, can I try that?”

“Open up, Daddy,” I said, as I squirted the whipped cream into his mouth.

Conner squealed with laughter.

“That’s a great technique, guys. Ice cream and whipped cream whenever you need it, Conner.”

Conner beamed. “Yeah, Daddy, that way I can eat the medicine.”

“Okay, honey. You did great. Now, floss and brush and get into bed. Daddy will come up to tuck you in after me. Let’s go.”

I turned and glared at the glass in my husband’s hand. “Put that away.” I mouthed the words and followed Conner upstairs.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.