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 #71: A Family Deals With Unrecognized Epilepsy (Excerpt)

                               (Excerpted with permission from Dr. Lance Fogan’s novel, Dings)

Chapter 2

An elderly woman with bottle-blond hair was sitting at a desk in the reception booth. The skin around her dark eyes and throat was dry and wrinkled. She looked up from a magazine and opened the Plexiglas window. “Oh, my! I’ll tell them inside that you’re here. Just let me get some information.” The large round clock’s black hands on the wall behind her read twelve thirty-one.

“My son just had a convulsion. He’s real sick. His temperature is over a hundred and three, almost a hundred and four.” I turned my head and saw nurses in the emergency ward through glass doors. “He needs a doctor! Now!”

“Yes. Just let me get some information and then you’ll be able to go right in. They’re coming to get him.”

A gray-haired, unkempt woman dozed in a maroon armchair along the wall on the other side of the room. She opened her eyes, sat up straighter, dropped her hand from her cheek and addressed an empty room: “Sure. Go ahead. Go ri-i-i-ght ahead. I’ve been waiting over an hour for somebody to see me, and they just walk right in. For Christ’s sake, I’m sick, too, you know! For crying out loud!” Her hoarse voice belied years of smoking. I saw her sagging lower lip pull off to one side and her red, lower eyelids drooped. Ivory-colored stuffing protruded through a small tear in the Naugahyde where the woman had braced her elbow on the worn armrest. An unbuttoned cloth coat hung loosely on her thin torso to expose an old pink housedress with small blue roses printed all over it. Thick, flesh-colored stockings were rolled down to her ankles and her puffy feet were stuffed into a pair of pink, terry-cloth bedroom slippers.

Shut up! Shut up, won’t you? I snarled to myself as I gritted my teeth and turned back to the receptionist.

The receptionist never looked up as she wrote down my information. “Now, Mrs. Franklin, you can see this little boy is real sick, with that bloody mouth and all. The doctor will see you soon. He just took care of you two nights ago.”

I shifted from one foot to the other. Conner slumped toward one side of the large wheel chair. I straightened him up. “Can’t we go in yet? He needs the doctor, right now! It’s an emergency! Can’t you see that?” What was she waiting for? What was she talking to that repulsive old hag for? What was she doing?

The receptionist’s mouth twisted and she was about to say something when doors whooshed open and a tall blond nurse wearing tan scrubs came toward us. “I’ve got your little boy, Mrs. Golden.” She took charge of the chair and wheeled Conner back through the automatic doors. I took little skips alongside to keep up. I used one hand to support Conner in the chair while my other hand tucked the blanket back around his body. Past beds: old, pale-gray man upright in bed—clear plastic pronged-tubes plugged under his nose—rapid breaths—hissing—eyes closed—youngish brunette woman propped up on pillows reading magazine—dark red bag on a pole, dripping—needle in her arm at end of red tubing.

The nurse called out, “Dr. Choy, we need you.” Her voice was so much calmer than I expected. She wheeled Conner to a bed covered with a gray blanket that spread out all tight and neat over crisp white sheets. The pillow looked huge, full. Chrome side rails hung down. I stood back and watched as another nurse came and they lifted Conner onto the bed; one took his feet and the other held him under his arms.

The tall blond handed me our folded-up blanket. “You’ll lose this if you don’t hang on to it. We’ll take care of him now. You can wait there. We’ll just take a minute. The doctor on duty is Dr. Choy. He’s coming.”

They left me standing outside as they pulled cream-colored cloth curtains around Conner’s bed. I looked up when the curtains squeaked on metal rods in a track on the ceiling. The curtains closed. Bewildered and angry, I took a single step and stopped. I turned and surveyed the brightly lit ward. Disinfectant and other hospital smells wafted into my senses. Nearby, several nurses checked IV lines on poles, wrote in charts, or typed on computers at the central desk station. Only three of the other eight beds in the ward were occupied—all by adults. An elderly woman with blue-gray hair in an unbuttoned tan coat sat next to the old man getting the oxygen through the tube under his nose. I could make out black letters on the orange dust-jacket of a closed book in her lap. I saw sensible low, thick-heeled black shoes. I started to turn away but then our eyes met. She smiled. Compelled, I turned back and returned the smile: perfunctory, superficial.

Now Conner was in one of these beds but I was out here. I turned back and heard muffled words behind the curtain. Before I could get what they were saying an Asian doctor was at my side chewing on something.

“I’m Dr. Choy. I’m on duty tonight. Mrs. Golden, right?”

“Yes, I am. Mrs. Golden. That’s right. My son’s in there.” I jerked my head toward the curtain.

“Tell me what happened to Conner. That’s his name, isn’t it?”

How’d he get that information? I hadn’t seen anyone talking to him. A light-blue stethoscope draped around his shoulders. Dr. Choy was about my height, stocky and clean-shaven with short, straight dark hair. I saw no wedding band when he rubbed his nose. His right index and middle fingers had deep yellowish-tan stains. He wore dark green scrubs and had tan, wooden clogs on his feet. He must be American: he had no accent.

“Yes. My son started with a cold yesterday. He developed a real bad cough and was sneezing a lot. I took his temperature less than an hour ago, I think.” I glanced at my wristwatch. “It was a hundred and three point six. When I went to phone Dr. Jackson—he’s our pediatrician—we heard this horrendous sound, this God-awful scream. We ran to his bedroom and, my God, he was having a convulsion—at least that’s what my husband thought it was. Conner was shaking and jerking all over. His mouth was all bloody, too. I don’t know why. We drove here as fast as we could.”

He nodded. “It sounds like he had a convulsion but it seems to be over now. I’ll examine him and then I think we’ll be getting a head CT scan in addition to routine lab work. It will show if there’s anything in his brain that could cause the seizure. Let’s go into the conference room where we can sit down, Mrs. Golden.” There was an odd movement when he spoke—his cheeks puffed out in a funny, quick, disturbing way after every few words. It was peculiar, really odd. I’d never seen anyone do that.

“You think there could be something in his head then? Like a tumor, or something, Doctor?”

“We usually don’t find a tumor, Mrs. Golden, and that’s a fact.” He shook his head. “But I have to make sure that there’s nothing serious going on, especially with his fever. It’s just a routine test we do when people have a seizure.” He smiled wide and his eyes narrowed; their sides wrinkled up.

His comment made me feel a little more at ease. Maybe whatever was wrong with Conner wasn’t that serious.

I spotted Sam and Madison crossing the large rectangular emergency ward. Sam had put Madison in the stroller that we kept folded in the SUV. I waved with a side-to-side, jerking motion. He walked toward us. Madison’s head turned from side to side. She watched the nurses and sucked on her Binky. Sam took a deep breath. He looked pitiful as he peeked through the opening of Conner’s curtain. I could see through the slight opening, too. Conner was on his side: a gray blanket partially exposed his pale back and bottom, and a nurse was taking his rectal temperature. An IV line had already been inserted near Conner’s left elbow. It had some white bandages over it and his arm was stretched out, taped to some kind of board.

“Sam, this is Dr. Choy. He said he’s going to do a brain scan on Conner, and some other tests.” My voice sounded higher-pitched than usual. I trembled inside. “The doctor said that the scan will show if there’s any serious problem inside Conner’s head. But they usually don’t find anything.” I left out “tumor.” The less I thought “tumor,” the less chance there would be one. That’s how I manage tough, confusing situations: don’t think about it. Magical thinking helps.

Madison squirmed in the stroller and reached up to me. I lifted the toddler and held her close.

“There, there, honey. Mommy’s got you.” I patted her hair and kissed the top of her head. I breathed in that scent. Mom used the same baby shampoo on me and it always took me back to that time whenever I smelled it on her. Madison rested her head on my shoulder and sucked on the pacifier like nobody’s business. She clutched her stuffed giraffe to her chest. Her head dropped to the crook of my neck. I smoothed her hair and kissed her ear. I shifted my weight from one foot to the other as I held her, a little dance that usually soothed her.

The men shook hands. “Yes, Mr. Golden. I’m Dr. Choy. How are you? Your wife just told me what happened. I’ll be taking care of your son.”

I saw a tiny particle of white rice fly out of the doctor’s mouth. I also detected the pungent aroma of garlic and ginger coming from somewhere.

Sam’s eyes looked at the ID tag pinned to the doctor’s scrub shirt: SAMUEL CHOY, M.D., Ph.D., Emergency Medicine. His gaze fixed on an open pack of cigarettes bulging from the pocket behind that tag. He looked up into Dr. Choy’s face. That look—that near-sneer that had become too familiar in our home—said everything. How did Sam ever get along in Iraq? So many soldiers smoked.

The doctor didn’t miss his expression, either; it seemed like he temporarily lost his train of thought. Dr. Choy stared for a second. Then he looked down, cleared his throat and turned his attention back to me as a nurse slid open the curtain around Conner’s bed. Conner was on his back now. The gray blanket covered him up to his chest. He seemed to be in a deep sleep, breathing softly. The blood was gone from around his mouth, thank God.

“He’s ready for you now, Doctor,” she said. “I’ll get his vitals into the computer. They’re normal, except his rectal temp is one hundred and one point six. The five-percent IV D and W are going in at a slow drip.”

Our eyes met. “Thank you,” I whispered. She smiled and touched my hand as she and her colleague walked past us toward the nurses’ station.

Sam looked pale. He gripped the back of a chair. His jaws clenched when Dr. Choy said, “Mr. Golden, a little while ago your wife described what happened to Conner at home. It sounded to me like he had a grand mal seizure.” I clasped Sam’s hand. The doctor turned his head and looked at an open door of a nearby room. “Here, why don’t we sit down? We can go into the conference room.” He took a step forward. “Has Conner ever had one before?”

            Sam and I looked at each other but before he could answer, I interjected, “No, Doctor. I—we—want to be where we can see Conner. Can’t we stay here? No. He’s never had a seizure; of course not!”

            I saw the doctor’s eyebrows pull up and his eyes opened wider after I said that. I realized I had shouted that. “I’m sorry, Doctor. I’m a bit upset and topsy-turvy now. No, Conner’s never had anything like this before.”

I saw this calm demeanor that doctors acquire. His face relaxed. He directed a slight smile at me, accompanied by several little nods. “Okay. We wouldn’t be far away but I understand that you want to stay close to your son. We’ve done vitals on him and drawn some blood for tests. We’re also collecting urine and I’ve started him on a medication that should prevent any more seizures.”

Medicine! What medicine?

Without seeming to pause for breath, “The CT scan will be done in a little while. The scanner is in the radiology department down the hall. They’ll come for him shortly. It’ll only take a few minutes. It could tell us why he had this seizure.”

Why he had this seizure? We would know that…right now…good...

“Your son has a moderate fever; his temperature has come down a bit from what you said it was. Now, please tell me everything that happened before you brought your little boy in.”

“Well, Doctor, as I said, Conner was sneezing last night. He was coughing a lot, too, and...” I told him everything. I know I sounded rushed, and I kept looking at Conner as we all stood next to his bed. Conner was on his back with his eyes closed; the IV dripped a clear liquid into his arm. A clouded plastic bag hung from the side of his bed and pale, yellow urine ran into it from a clear tube coming out from under the sheet covering him. “Is that tube stuck inside my son’s bladder? That’ll hurt, Doctor. Why’d you have to do that?”

“No, Mrs. Golden. Don’t worry. The tube is not inside his bladder. It’s a condom catheter stuck onto the end of his penis. Urine will just come out naturally. No, nothing’s inside him. So, what happened?”

Sam blinked hard a couple of times and wrapped his arm around my waist. His cheeks bulged as his jaws clenched.

            Dr. Choy glanced at Sam, and then he leaned over and coughed into his fist. “Sorry.” He looked at me and smiled. “We’re going to take good care of your son. He’s going to be all right. Seizures are quite common and they’re not always serious. Conner can be perfectly fine afterward.” There were those funny little blowing cheek puffs again between his words.

The doctor coughed again and covered his mouth with yellow-stained fingers. He cleared his throat and stepped away from Conner’s bed. “Why don’t we all sit down in our conference room while the scan is being done? I need to ask you more questions about your son’s medical history.”

Sam and I nodded. Conner seemed comfortable now. Dr. Choy escorted us to the conference room just steps from my son’s bed. He waited at the doorway and extended his arm to usher us inside. I carried Madison and Sam pushed the empty stroller into the room.

“Would your little girl like some milk or juice?”

“No thank you, Doctor. She just needs to sleep. I would like to take her to the bathroom. She’s potty-trained but I don’t want to over-test her. Where is it?”

I put the blanket that I had been holding down in the stroller, excused myself and carried Madison to the bathroom. My soles squeaked on the linoleum floor. I set her on the toilet and waited. The mirror reflected my drawn and worried expression: my muddled auburn pageboy, cut off above my shoulders; my brown eyes, pink from shed tears, starkly contrasted with my clear, pale complexion. I wondered if that old rash would break out again with all this stress. The taste of pasta salad from supper came up in the back of my throat. I tucked my blouse back into my slacks and pulled down my sweatshirt. I really have to lose these extra fifteen pounds...      “That’s a good girl, Madison, honey,” and I pushed the flush handle. We washed our hands.

We passed Conner’s bed. It looked like he hadn’t moved. The IV dripped and it seemed like his urine bag was filling up. In the conference room, I sat Madison back in the stroller, eased the back down and covered her with the blanket. She closed her eyes and rhythmically sucked on her pacifier. She was fast asleep.

Sam and the doctor sat opposite each other at the rectangular wooden table. There were four dark, hard-back wooden chairs on each side and one chair at either end. I sat beside Sam across from the open door. I wanted to see Conner. Madison slept in her stroller behind me next to the wall.

Dr. Choy chuckled and slid several containers of Chinese-takeout to the other end of the table. Their top flaps winged upward and a set of wooden chopsticks stuck out of one of the white boxes. The containers featured drawings of vicious-looking dragons with open mouths and Chinese writing in bright red. “I’m sorry. I was having my lunch when you arrived.” He smiled. The pungent aromas of garlic and ginger filled the air.

Sam smiled back. I set my mouth in a grim line. I could barely see the foot end of Conner’s bed.

I noticed red blood splotches on my sweatshirt’s right shoulder where Conner’s bloody mouth had touched it in the car. As I looked down at it, Dr. Choy said, “You can get that spot out pretty easily, Mrs. Golden. Just dab milk on it. That’s a trick I learned from nurses early in my training. It works every time. The milk enzymes break down the blood cells.” He had a broad smile with great looking teeth, sparkling almost.

“That sounds like a neat trick. I’ll try it.”

Conner’s nurse appeared in the doorway. She briefly surveyed our little group and announced, “CT can take him now, Dr. Choy.”

“Good. I’ll finish the physical exam when he gets back. It looks like he won’t need any sedation; he’s still postictal.”

Postictal? I raised my brow and looked at Sam.

Dr. Choy picked up on my quizzical expression. “That means that Conner is still in a stupor, Mrs. Golden. It’s routine after a convulsion. He’ll sleep, probably for a few hours. He won’t remember most of this when he wakes up. The radiology department will finish with his scan in a few minutes. After they bring him back I’ll take a look at it.” He alternated his gaze between Sam and me. I liked him. He explained things.

           The second half of Chapter 2 will appear in a future blog.

 

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.