Blog #141: A FAMILY DEALS WITH UNRECOGNIZED EPILEPSY: Excerpted from Dr. Lance Fogan’s novel, DINGS. Chapter 24, Part 3

Continuing In the Neurologist’s office—making the diagnosis—the little boy admits to his spells under sophisticated questioning.

“Sandra.” Sam reached for my hand. I snatched it away.

I pressed my lips together and shook my head. “I don’t believe this!”

“Conner, when did these dings start?” The doctor asked. His voice was gentle and even. I looked at my lap and tried to organize my thoughts. Dr. O’Rourke continued, “Do you remember when you had the first ding, your first one?”

“I—I don’t know.”

“Well, did they start a month ago? A few months ago? Before Christmas? Did they start last year, when you were still in second grade? Or, even before that? When do you think?” He smiled at our son. “Take your time. You’re doing very well, Conner.”

“Last year…um…I think, when I was in second grade. Yeah…ahh…second grade. I think...”

“And what do you mean by what you call ‘dings,’ Conner?”

“They’re dings because…uh, uh…I guess, because they feel like, uh…like little dings. You know…I don’t know.”

The doctor nodded and regarded him for several seconds. “What does a ding feel like?”

“Um…I get this funny thing…I think it’s down here.” Conner looked down and touched his shirt right over his bellybutton. “Then I get scared…but I don’t know why because there’s nothing around to make me scared. You know. Then I smell that bad thing. And then…I don’t know! I don’t know!” He sniffed and wiped his nose with his sleeve.

Dr. O’Rourke directed a quick gaze at us and then back at Conner. “How long do the dings last, Conner?”

“I don’t know!” He started to sob again. I flashed a weak smile at the doctor as I wiped my son’s cheeks and put the tissue into his hand.

“Have you ever fallen down when a ding happens? Do they ever happen when you’re standing up?”

He sniffed. “No…um…but, yeah, sometimes I fall when I’m running or playing a game.”

Dr. O’Rourke smiled at him. “Do you think you fall because you’re having a ding?”

“No.” He snorted and wiped his nose with the tissue. “I’m just playing and…uh…I trip on something or somebody tackles me. But, sometimes I drop things…you know…when I have a…um…a ding.”

“Oh, Conner. Why didn’t you ever tell me you were having these things?” I tried to smother the panicked tone in my voice as I brushed a lock of hair out of his eyes. “Honey, have you had these dings at home? Have I ever been with you when they happen?” I turned back to the neurologist, “I can’t recall seeing anything like what he’s describing, Doctor.”

“I don’t know when they happen, Mommy.” He sniffed again and rubbed his nose with his sleeve. “I don’t.”

The office was quiet now except for his sobs. It shimmered with the vibrations of our fear and pain—a pain that pierced and gripped me completely—an agony that I would carry and remember for the rest of my life. Whatever happened to my son would change—no, it had already irrevocably changed—our lives. Just weeks ago we were having the happiest of days: Sam came home from Iraq; we pulled into our driveway with him; neighbors welcomed him home; he put on his old clothes; the gifts he gave us; that wonderful first dinner with candles…

“Has Conner had any problems with bed-wetting?” Dr. O’Rourke asked me.

“Hm? Oh, ah…bed-wetting?” I looked at Conner. This was not the time to shelter him—not here in this office. “There’ve been a few times, and he’s had a few accidents in his pants during the day. On laundry days—a few times I’ve found yellow stains on his underpants. They smelled like he had wet them.”

Conner moaned, “Mo-om!” and looked up at me, his eyes pleading.

I placed my palm on the top of his head. “Honey, I’m so sorry. I don’t mean to embarrass you, but this is important. The doctor has to know.”

“Conner, do you lose your urine—your pee—during these spells?” The doctor asked softly.

“We-ell...” Conner looked at me.

I nodded. “You can answer the doctor, Conner.”

He said, “Um…yeah.”

“Do you know that you’re going in your pants and you can’t stop it? Or is it that all of a sudden you’re wet and you didn’t know that you were going?”

“I-I d-don’t know that I-I’ve done it until I-I’ve d-done it,” Conner stammered through his sobs.

“Have you ever pooped in your pants?” Dr. O’Rourke’s voice was so low that I could barely make out what he said.

Conner gulped down a sob.

The neurologist cast a quick glance from Conner to us. “Has he had any bowel movements in his pants?”

“No, thank God.” I shook my head.

“Has Conner ever bitten his tongue or lip when he’s sleeping? Have you ever found blood on his pillow, Mrs. Golden?”

“Only on the night of his seizure, Doctor. I’ve never seen blood any other time.”

“So, it seems that he hasn’t had any other convulsions in his sleep that you and Mr. Golden had not witnessed.”

I shook my head and looked at Sam.

Dr. O’Rourke smiled at his patient and asked, “Conner, have you ever noticed any weakness in your arms or legs when you have a ding? It can be before the ding or after it, or at any other time.”

“No.” Conner shuddered.

“Good. What about tingling feelings? Have you ever had any tingling—you know, like the pins-and-needles you get if you hit your funny bone in your elbow—anyplace in your body when you have a ding?”

“Uh…no. I don’t think so.”

I wanted to know more, as I listened to their exchange. Yet, I feared more bad news.

“Conner, have you had any headaches or double-vision? You know, like seeing two things instead of one thing. And, do you ever have any trouble seeing out of one eye? Or numbness, like funny feelings that stay there on your face?”

“My face itches, sometimes.” Conner scratched his cheek.

“Well, yes. That’s normal. What about any funny or tingly feelings on your face when you get your dings?”

“No.”

“What about swallowing or hearing problems? Do you ever hear strange noises or voices when there’s no one talking and no one else around during your dings?”

“No.” Conner shook his head.

“Which hand do you write with, Conner?”

“Um, my right hand.” The boy held up his left hand, looked at it and quickly replaced it with his right. He turned toward me and gave me a tentative smile. He asked abashedly, “Is this my right hand, Mom?”

“That’s good,” Dr. O’Rourke said with a wide grin. He looked at me. “He is right-handed, correct?”

“Yes. He seems to write and draw with his right hand, Doctor.”

I looked at Sam. So, he finally spoke up.

“Since he writes with his right hand, the middle section of the left side of Conner’s brain is where his language center resides. In other words, it’s his dominant side. That suggests that there’s no serious structural problem in that part of Conner’s brain, especially since he had a normal CT scan. You see, the left side of the brain is dominant for most people. If you or your son reported that he had speaking or comprehension problems—that is, difficulties understanding speech—it could be a clue that his seizures came from that left-sided language area. However, he will need an MRI—a Magnetic Resonance Imaging scan, with—”

“What’s that? No! Will there be needles?” Conner leapt to his feet. Sam and I immediately reached up and touched his shoulders.

“Sit down, son.” Sam tilted his head in the direction of the boy’s seat.

Conner dropped hard onto his chair. He elevated his shoulders, opened his mouth and squinted at the neurologist. His voice quivered, “Will there be needles? Will there?”

“The MRI scan is just like the CT scan you had at the hospital. But, this time you’ll be in a tunnel.” The neurologist moved his gaze from Conner to Sam and then to me.

“Conner wasn’t awake when he had the CT scan, Doctor O’Rourke. He was still asleep after the seizure.”

“Oh. Okay. I see.” He nodded and turned back to his patient. “Well, Conner, there shouldn’t be any needles, but I can’t promise. That will be up to the radiologist. That’s the doctor who does the MRI. The radiologist will be evaluating the images as the scan is being done. If the doctor believes that more information is required, then an intravenous line may be started to inject a special dye, but—”

Conner pouted and crossed his arms over his chest. His swollen, red eyes welled up again.

“No. Wait, Conner! That won’t be done unless it’s absolutely necessary.” Dr. O’Rourke reached across the desk and touched our child’s hand. “The MRI shows the brain structures a little differently from the CT scan. It can give us additional, more detailed information. We—the doctors—need to be certain to rule out any problems.

“Look, Conner. We are going to become a team. From now on, we are going to be working—like playing—together, for a long time. I am going to be your coach. You are the star player. I will give you your rules and your plays. Your mom and dad will be like our team trainers. I’ll tell you what the team will do.”

I liked that metaphor. It should capture Conner’s cooperation. Brilliant. I smiled at my son and touched his back.

Dr. O’Rourke watched us momentarily, then continued, “I know this can all be confusing, but usually we don’t find any cause of epilepsy.”

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.