Monday, October 26, 2020

Blog #123: A FAMILY DEALS WITH UNRECOGNIZED EPILPESY: Excerpted from Dr. Lance Fogan’s novel, DINGS


Chapter 24, Part 1

 

Conner squeezed my hand as we followed Hannah to Dr. O’Rourke’s office. I glanced at the framed art reproductions that adorned the corridor walls; several looked familiar. As soon as we entered his office, I detected the aromas of cinnamon, apple and coffee, but I couldn’t see any lunch leftovers or candles or anything.

“This is Conner Golden, Doctor.” She then turned toward us, nodded and with a face-lit smile announced, “Mr. and Mrs. Golden.” Hannah then indicated the neurologist with her open palm. “And this is Dr. O’Rourke.” She left and pulled the door closed behind her. My heart quickened.

The man whom I recognized from the website smiled, stood up and came around his desk to greet us. He was several inches shorter than Sam and only an inch or so taller than me. The doctor’s bowtie was not the same as the one in his website portrait. This one’s butterflied wings were deep red and arrayed with narrow, bright blue and yellow diagonal stripes. His temples were gray; the rest of his head was covered with dark, medium-length hair parted on the left. The crown of his head had a neat, round bald spot that reminded me of the tonsure that monks wore in paintings from the Middle Ages. The corners of his light-blue eyes wrinkled with a warm smile. A slight paunch pushed aside the edges of his unbuttoned knee-length white coat.

Dr. O’Rourke smiled even more broadly as he extended his hand to Conner. Our boy pressed against his father’s torso. Sam smiled and gently pushed Conner out in front of him with his palm. Our child’s eyes widened as he looked up at the neurologist with a guarded expression.

At Sam’s encouragement, he extended his arm and shook the doctor’s hand. He reached for mine with his other hand and looked down. His small palm was icy-cold.

The doctor leaned forward and regarded Conner’s hand. Several of the fingers were stained with blue and red ink that I couldn’t remove from his recent art project. “Hello, Conner. I’m Dr. O’Rourke. It’s very nice to meet you. I see that you’ve been doing some painting.”

Conner looked at his right hand, which was mostly enveloped in the doctor’s. Then he cast a sideways glance at the doctor and flashed a shy smile.

“I’m so sorry, Dr. O’Rourke. I couldn’t wash off all of the ink from Conner’s hands. My son is into mythology, and he likes to draw and paint Greek and Roman and Egyptian characters.”

Still leaning over Conner, he exclaimed, “Mythology! Hey, now! Wow! And you are only in the third grade? You’re eight, right?”

“I’m eight and a half.” Conner cocked his head and grinned with widened eyes. Sam and I both smiled at our son’s brisk retort.

The neurologist nodded several times and looked up at us. His broad grin exposed a small chip off his left lower-front tooth. “That’s a pretty sophisticated subject for a third-grader. You must be really smart.”

The small talk was helping our son get comfortable with this man in the white coat. I saw him turn his attention to the certificates and pictures on the walls and to the books on the shelves as we chatted.

“Do you also know the Scandinavian stories and the Native American mythology tales too, Conner?” Dr. O’Rourke cocked his head, raised his eyebrows and waited for his young patient’s response.

Conner grinned with growing enthusiasm. “Oh yeah. I know pretty much all of them. They’re on my computer. I have tons of mythology games. I play with Zeus and the Titans and the Greek Underworld. There’s some stuff about the Vikings too, but not much about the American Indian ones.” Conner waved his hands and shifted his weight from foot to foot as he described his favorite mythology games to the neurologist.

I smiled and felt a bursting feeling in my chest. Sam had a proud grin.

“That is wonderful, Conner.” The doctor indicated three matching dark-green cushioned chairs in front of his desk. “Please! Everyone have a seat. Why don’t you sit here, Conner,” he pointed to the middle chair. Dr. O’Rourke lowered himself into a cordovan-shaded leather armchair behind his large mahogany desk.

“I’ve been reading Dr. Choy’s notes, and I’ve had a look at the results of all of your lab tests, Conner. I’m pleased to say that everything seems normal.” He smiled at me and then at Sam. “That’s great news. Let me explain more about the records that I’ve seen.”

Even though the doctor’s friendly and confident demeanor was reassuring, I couldn’t relax. My jaws clamped and my hands pressed down in my lap. There was some pressure in the sides of my head and I breathed quickly.

The neurologist placed both hands on the desk and leaned toward us. Sam leaned forward too, and clasped his hands between his legs. I was aware of my rapid breathing; I tried to control it. I exhaled and sat back in my chair. I crossed my legs. Conner’s brows furrowed which added to his cautious, serious expression.

“Conner, do you want to see pictures of your brain on the CT scan? They’re really interesting.” Dr. O’Rourke angled the computer monitor so we all could see the images. “Have you studied the body and the brain in school yet?”

“No.” Conner stood up and leaned against the desk.

“That’s right. Get close so that you can see,” Dr. O’Rourke said.

Conner propped his elbows on the desk and cupped his chin and cheeks in both palms. “Gee! Wow! My brain! It looks just like on TV shows, only this is way cooler. That’s really me? That’s really my brain?”

I looked at the black, gray and white images on his computer monitor.

The neurologist smiled at Conner. “Yes, it is. This is your brain. Here are your smelling nerves, your eyes and ears.” His index finger showed us where Conner’s balancing center was and the muscles that made his eyeballs move. Then he explained how thinking, speaking, comprehending, remembering, moving, seeing, touching and feeling happened in specific parts of the brain as he indicated them.

He indicated the cerebrospinal fluid that surrounded the brain and filled the chambered ventricles. “Dr. Choy obtained some of this fluid from your lower back when he took care of you in the emergency room, Conner. It was a very important part of your examination, and it was entirely normal.”

Conner reached behind and touched his lower back. His eyes widened and his mouth opened as he turned toward me. “That’s why I had that Band-Aid on my back when I came home from the hospital, right Mom?”

I nodded and touched my son’s shoulder. He turned back to the doctor.

Sam leaned closer to the screen.

The neurologist sat back and propped his elbows on the armrests. He steepled his fingers under his chin. “Everything in your brain looks normal, Conner. Now, let’s find out how it’s working.”

Conner stiffened. “You’re not going to give me any shots, are you?” I saw his glare at a small red ball that was on the tip of a long, thin pin protruding from the lapel of the doctor’s white coat.

I touched Conner’s neck. I wondered what the neurologist did with that long pin in his lapel. I counted three pens and a small flashlight in his left breast pocket. A thin handle with a pointed end protruded from the side pocket of his white coat. I glanced over the framed diplomas and certificates on the walls. I got a sense that they were staring down at my son, and modern medical science and all of its mystery were about to scrutinize him. My hands were cold.

“Conner, right now I’m going to ask you some questions about how you’re feeling. Then we will all go into the exam room, and I’ll check you out there. Your parents can come too; there won’t be any shots or blood tests.” He smiled at Sam and me.

I appreciated how Dr. O’Rourke reassured our boy. Still, Conner anxiously snapped his head around to look at his father. Sam nodded back. Then he glanced down at the spot where his IV had been. The bruise on his arm was mostly faded and had turned a pale bluish-yellow. He rubbed his arm and looked at Dr. O’Rourke.

Sam glanced over at me. We were poised to say something or to touch our son to reassure him. However, there he was, listening and seeming to understand everything the doctor said.

“Now, do you remember the night that the seizure happened?” The doctor looked down at the papers on his desk. “When was that, about a week and a half ago?”

I nodded. “Uh-huh.”

Conner tilted his head and frowned. “I didn’t feel good.”

 

 

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.

Friday, September 25, 2020

Blog # 122: EPILEPSY IS ASSOCIATED WITH HIGHER DEATH RISK FROM COVID-19

 A recent article summarized a Spanish study1 (published only on line to date) to estimate incidence and case fatality rate of patients with epilepsy and COVID-19.

It is known that patients with epilepsy are at elevated risk of respiratory diseases, especially those due to infections. This referenced investigation supports this. Spanish investigators studied 1,537 patients with COVID-19 admitted over one month in spring, 2020, including 21 with active epilepsy and 1,516 controls without active epilepsy.

 

A cumulative case fatality rate of 1.2 percent was found in the patients with COVID-19. The general population with COVID-19 without active epilepsy had a lower death rate due to COVID-19 of 0.5 percent. Patients with high blood pressure and with epilepsy and COVID-19 predicted even greater mortality.

We all must be attentive to safe distancing and mask-wearing at this time. My blogs #117 on April 25, 2020; #118 on May 25, 2020 and #120 on July 25, 2020 at LanceFogan.com deal with COVID-19. They discuss more helpful information on your epilepsy and staying safe during this covid-19 pandemic. Infections with COVID-19 are associated with worsening seizures in many people with epilepsy. I urge you to practice recommended safety measures to protect yourselves from COVID.

 

1)     P.Cabezudo-Garcia, N. Lundahl Ciano-Petersen, N.Mena-Vazquez, et.al. Incidence and case fatality rate of COVID-19 in patients with active epilepsy. Neurology 2020;95:e1417-1425 2020 Sep 8;95(10):e1417-e1425. doi: 10.1212/WNL.0000000000010033. Epub 2020 Jun 17

 

 

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.

 

Tuesday, August 25, 2020

Blog #121: IF YOUR SEIZURES AREN’T CONTROLLED EPILEPSY SURGERY IS SAFE AND REALLY CAN HELP

I have addressed epilepsy surgery before in several of my 120 monthly epilepsy blogs published at LanceFogan.com since 2011. Evidence is overwhelming that epilepsy surgery, if you are a candidate, is safe and can be tremendously beneficial in reducing, or even, curing your epilepsy.

 

The chief research officer and epilepsy specialist at Cleveland Clinic, Lara Jehi, MD, detailed the patient-centered pros and cons associated with epilepsy surgery, as well as the stigmas related to it. “Even before you put a patient through the surgical testing, neurologists have to identify if they’re a surgical candidate. The most cost-effective option is to send them to get that evaluation.” Jehi hopes that her study can help demystify some of the preconceived notions that surround epilepsy surgery. NeurologyLive /www.neurologylive.com/videos/lara-jehi-md-pros-and-cons-of-epilepsy-surgery.

 

A recently published study that evaluated costs found epilepsy surgery was cost effective ($328,000) compared to medical management ($423,000) in surgically eligible patients and more effective (measuring Quality Adjusted Life Year of 16.6 vs. 13.6 QALY) than medical management in the long run. The quality-adjusted life year (QALY) is a generic measure of disease burden, including both the quality and the quantity of life lived.1

 

The data has potential to raise eyebrows within the epilepsy community, and ultimately sway more patients to not only get the surgery, but to at least have their own surgery-eligibility evaluated. Dr. Lara Jehi feels that patients don’t fully understand the benefits that come with epilepsy surgery. She encourages those eligible to at least consider surgery knowing their less-than-effective anti-seizure medication will probably not improve their quality of life.

 

“There are a lot of fears out there. Some justified, but some due to misperception and misinformation that may stop someone from getting to the point of looking at brain surgery.” Jehi provides insight on the truth behind the stigmas related to epilepsy surgery and whether patient fears are legitimate. In the above video Jehi discusses moms worried about weeks long hospitalizations for testing, other family responsibilities during that time; time off work; relatives with past complications due to other types of surgeries.

 

Her study results confirm the positives of surgery. Epilepsy surgery is underutilized and not recommended to a large number of patients by their neurologists despite multiple studies proving its effectiveness and long-term benefit with drug-resistant temporal lobe epilepsy. Jehi hopes that her study can help demystify some of the preconceived notions that surround epilepsy surgery.

 

  1. Sheikh SR, Kattan MW, Steinmetz M, Singer ME, Udeh BL, Jehi L. Cost effectiveness of surgery for drug resistant temporal lobe epilepsy in the US. Neurology. Published online July 8, 2020. doi: 10/1212/WNL.0000000000010185

 

 

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.

 

 

Saturday, July 25, 2020

Blog #120: IS YOUR EPILEPSY CURRENTLY WORSENING? YOU’RE NOT ALONE.

 
The United Kingdom’s (UK) charity for young people with epilepsy, YOUNG EPILEPSY, evaluated the difficulties under lockdown for the 112,000 young people with epilepsy. I would extrapolate these difficulties to the general epilepsy population in the United States. You are not alone.

Key findings from the study of nearly 300 young people with epilepsy and their parents and carers probably parallel your experiences in the U.S. under COVID-19. These are:
  • 30% of respondents reported an increase in seizures during lockdown - this may be related to a change in routine and lack of the usual support mechanisms.
  • The majority of young people with epilepsy report deteriorations in sleep (72%) and mood (63%) in lockdown - young people with epilepsy are four times more likely than their peers to suffer from mental health issues. Their parents and carers themselves also reported increased stress and anxiety.
  • Nearly a quarter (23%) also say that they've had clinical procedures or investigations cancelled during lockdown - in addition, 61% are more reluctant to go to hospital, with both issues likely to increase stress if it means a young person’s epilepsy going unmanaged.
  • Nearly a quarter (23%) say that they have had trouble getting medication during lockdown - respondents mentioned pharmacies not stocking their regular medication, having to drive further to get the medication or switch between brands or types of medication, while others were frustrated that existing difficulties in obtaining medicines had been exacerbated.
  • Most respondents (82%) say they worry that catching coronavirus would impact negatively on the frequency and severity of seizures - fever is a known trigger of seizures in some epilepsies, and one respondent said they had their first seizure in five years while suffering from Covid-19.

People with epilepsy already feel isolated; they face significant challenges even before the Covid-19 pandemic, including a higher likelihood of unemployment and mental health issues compared with the general population.
Comments covered by Medical Sciences News by Mark Devlin, CEO of the UK’s Young Epilepsy organization, report lockdown has exacerbated the many challenges which children and young people with epilepsy already face. Just 34% of working-age people with epilepsy in the UK are employed, and many have co-existing conditions such as autism which create further barriers to work, meaning that the recession offers bleak prospects for young people.
Young Epilepsy hopes that in the lifting of lockdown and recovery from the pandemic, the UK’s National Health Service and wider society will learn lessons in how to provide the support to help people with epilepsy lead the life they want to live. Wider access to remote health appointments is one specific measure, as is the urgent rescheduling of any treatment or appointment postponed due to Covid-19 pressures.”
One of Young Epilepsy’s representatives said: “Throughout this time I've had to postpone several appointments, and missed blood tests that I'm supposed to get every three months to make sure my main antiepileptic drug levels don't get too high and potentially put me in a coma. My meds, which were finally being ordered automatically by my pharmacy at the right time each month after a year of dose changes which confused everyone but me, are now messed up again with them giving me two months of some and not others.
“It's these small uncertainties and frustrations that add up and amount to the kind of stress that can cause a sudden peak in seizures. My seizure control has already dropped in the last month and the fear that it could continue to get worse with this ongoing stress is concerning —nobody wants to end up in emergency departments during a pandemic.”
In the UK in April Young Epilepsy launched its ground-breaking digital platform, The Channel. This platform, co-produced with young people, was launched because the charity recognized that young people with epilepsy have complex and often poorly met needs - even outside of lockdown - and that there was an appetite for reliable, specialist information provided remotely. Content on The Channel, which has already been accessed by thousands of users, includes advice and guidance on a range of topics from health and wellbeing to the personal and social lives of young people with epilepsy - including staying healthy in lockdown, and issues around Covid-19.
The Epilepsy Foundation of America provides similar digital support.



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.