Monday, June 25, 2018

Blog #95: A FAMILY DEALS WITH UNRECOGNIZED EPILEPSY: Excerpted from Dr. Lance Fogan’s medical mystery novel, DINGS.

Follow a family as they are immersed in a medical mystery: why is their 8 yr old failing school? Read an excerpt from DINGS at LanceFogan.com.  










 
Chapter 22, Part 1

The following week I returned from an early-afternoon errand with Madison and received the call I had been waiting for. I phoned Sam in a flush of excitement. “Honey? Sam? The neurologist’s office just called. Conner’s appointment is on Friday after school. Isn’t that great? I think—I hope—Conner will be able to stop taking those pills then.”
“That would be great, but we don’t know if the doctor will stop them—not for sure. We shouldn’t get our hopes up prematurely, Sandra.”
Why did he always have to do that? Why did he always have to smother my confidence, my optimism? Why couldn’t he just agree and be hopeful, too? “I know, Sam, but Dr. Choy told us that all of Conner’s tests were normal. Even he said that the neurologist probably would stop the Dilantin. Remember? He said that. I remember it. Don’t you?”
I was holding on, clinging to my very own one-person “lifeboat.” I knew that this was illogical, wishful magical thinking, but I would not let go of these hopes.
“No, Sandra. He said—whatever. Fine. We will clear everything up on Friday. That will be good for Conner. It’ll be good for all of us.”
This was not what I wanted or needed to hear: his typical pessimism. He would say it was his realism. “We’re having steak for dinner. ’Bye.” I hung up.
***
“What are you doing, Mommy?” Madison had padded down the stairs to find me circling the kitchen like a merry-go-round. I had been singing and clanging pans together preparing to bake.
“I’m going to make a special dessert for tonight, honey—a surprise for Daddy and Conner. Chocolate biscotti! Do you want to help Mommy, little one?”
I hummed and twirled as I opened cupboards and brought out more ingredients. I grabbed a bag of gourmet-chocolate nuggets and a bag of walnuts. “We all love my chocolate biscotti, and there’s just enough time to make it before our men get home. Do you know what, precious one? Conner should be able to stop taking those pills in two days. Two days! Won’t that be great, sweetheart?”
I whirled like a dervish. I glided and spun from the refrigerator to the cupboard to the cutting board and back again as I poured and measured, mixed, kneaded and chopped the ingredients.
I tied an apron around Madison’s little waist. She knelt on a chair at the kitchen table and pushed a rolling pin back and forth over an empty cutting board. She hummed with me, too.
I put the tray of biscotti into the oven. The essence of chocolate filled the kitchen. I telephoned my parents to tell them about Conner’s upcoming appointment and reconfirmed that no one else in our family ever had seizures. Then I called Kathy and Marge, my two closest friends, to share my excitement.
“…Yes, Conner should be able to stop taking those pills in two days. I really hope so, I pray so. It’s what I’ve read on the Internet. We’ll finally get to the bottom of this whole nightmare, and that should be the end of it.”
When Sam and Conner came home, I hugged and kissed them and hurried them off to wash for supper. Everyone loved the meal.
After we put the children to bed, Sam and I lingered over wine, talking on the couch in the den. It had been a good day—until now. I drank more than usual, a second glass just so he couldn’t drink the whole bottle by himself. He wanted to start a second bottle. “No, Sam. We’ve both had enough. You, especially. Please! You need to cut back. You never used to drink this much.”
His lips curled with a defiant glare. I froze. No arguments now, please…
He got up and brought out another bottle from the cabinet. Then his eyes darted swiftly between the bottle and me while he seemed to consider the situation. Slowly, he articulated each syllable: “I’m not ready to cut back, as you say.”
“Oh Sam. There’s so much happening with our family. I’m starting to think that we might not survive this.”
“Aw, c’mon. What are you talking about? It’s not that serious.” He began to cut off the cover over the cork.
I sat forward and looked up at him. “I’m telling you how it is, Sam. Now I’m going to tell you something else—something about me. I admit it. I’ve buried what’s really happening. I know that’s what you think. Nevertheless, I just had to. I’m so worried about Conner and for all of us. No one has yet told us why he had that convulsion. Not really. I’ve swallowed what Choy and Bob Jackson fed me—that the neurologist will agree with what they both told us. That he could stop the Dilantin. What if this neurologist finds something terrible in Conner’s brain even if the tests were normal? I’ve read about all kinds of terrible diseases on the Internet. Doctors make mistakes; it happens all the time. Everybody knows that. I need you with me now. Now, especially…” I felt drops roll down my cheeks and wetness ooze from my nose as I stared up into his face. I pulled out a tissue from my pocket.
His expression softened. “I—I—Okay, honey. Conner will be all right. You’ll see. He’s a strong kid.” He lowered himself onto the couch next to me with the dark bottle still in his hand. He laid the corkscrew on the coffee table. “I’m sorry. I hear you. Yeah. Okay. No more, tonight. I have been trying to cut back, honey. I have. It’s hard.” He stood the bottle on the coffee table and put his arm around my shoulders. I curled into his chest as he pulled me toward him.
“Oh, Sam.” My tenseness eased.
“Come on, honey. You’re so wound up with all these suppositions: they’ll stop the medicines; he’ll be on them forever. Just ease up and go with the flow. Isn’t that what you’ve always said? It’ll work out. Come on, Sandra. Remember Mark Twain? He was right. He’d ‘crossed many a bridge that never was there.’”
I looked into his eyes and managed a weak smile. “So, now you’re the one glossing over the problem and encouraging me? Nice.”



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, May 25, 2018

Blog #94: DISAPPOINTING NEWS: NO IMPROVED SEIZURE CONTROL WITH NEW ANTIEPILEPTIC DRUGS OVER PAST 30 YEARS

A recently published study found that one-year seizure-free rates for epilepsy patients have hovered at 64 percent for 30 years. More than one-third of patients experience epilepsy that is uncontrolled.1 Seizure frequency has not greatly changed. Adding, or substituting, antiepileptic drugs (AED) did not significantly lead to complete seizure control.
For those patients who stayed seizure-free for a year, 87 percent were taking just one AED and 90 percent achieved freedom from seizures with either the first or the second AED. If the initial AED failed, the second and third regimens provided only an additional 12 percent and 4 percent likelihood, respectively, of seizure freedom. Reductions in seizure frequency for treatment-resistant patients on each new AED, however, are not insignificant. But, only 2 percent achieved optimal seizure control with subsequent AEDs.
Current AEDs do not modify the underlying cause, i.e., the pathobiology of epilepsy.
Most patients in the study initially took Carbamazepine (Tegretol), valproate (Depakote) and phenytoin (Dilantin) in the 1980’s and 1990’s. Later, levetiracetam (Keppra) and lamotrigine (Lamictal) were the initial AEDs. Although some newer drugs have novel anti-seizure mechanisms, they did not improve long-term seizure control.
Worse prognosis for control was associated with: a) the number of seizures that occurred prior to treatment; b) a family history of epilepsy in first-degree relatives and; c) a history of recreational drug use in epilepsy patients.
Research into interfering with or reversing the underlying seizure-inducing process, rather than just suppressing seizures, continues.
The secondary benefits of newer AEDs should be kept in mind compared with older AEDs: these include lower risks for birth defects, improved cognitive profiles and minimal drug interactions.
Newer drugs in the pipeline hold promise. Experience will reveal their efficacy.
Genetic manipulations and immune therapies are exciting research areas to improve or cure epilepsy.  
Epilepsy-surgery can be curative in properly selected patients.

  1. Chen Z, Brodie MJ, Liew D, et. al. Treatment outcomes in patients with newly diagnosed epilepsy treated with established and new antiepileptic drugs. A 30-year longitudinal cohort study. JAMA Neurology 2018; 75 (3): 279-286.


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, April 24, 2018

Blog #93: DRIVING AND EPILEPSY: COMPARING USA AND UK


            In the United States of America, only the states of California, Delaware, Nevada, New Jersey, Oregon, and Pennsylvania require physicians by law to report persons with epilepsy. California mandates physicians report such patients to the state health authorities. The health department then reports such persons to the Department of Motor Vehicles (DMV). The DMV obtains information on the person’s medical condition from the patient and from the physician. The DMV decides if the license is revoked for a period of observation. If the person remains seizure-free due to effective medications or because the epilepsy has become inactive for 6-24 months the driving privilege can be reinstated. The DMV makes this decisionnot the physician!

            If the driving privilege is reinstated but then another seizure occurs it’s the responsibility of the patient AND of the physician to report this to the DMV for re-evaluation.

            In the 44 American states that do not have a mandatory physician-reporting law, it’s up to the patient to voluntarily stop driving and to report to the DMV. Emotional constraints and ethical challenges are rife: who wants to stop driving if their livelihood depends on it and especially if there is a paucity of public transportation in their area? Some of my own patients challenged me: “Don’t send that report in, Doc. Are you going to pay my mortgage if I can’t work at my driving job?

            EPILEPSY ACTION, a website in the United Kingdom (England, Scotland, Wales and Northern Ireland), advises people who have had a seizure of any kind to stop driving and report their seizure-condition to the driving agency. 1 In the UK, unlike in the United States, reporting is not necessary “on the understanding if the seizures are nocturnal, i.e., the seizures occur only during sleep. In nocturnal-type seizures in the United States physicians in those six mandatory-reporting states still must report. But, physicians may support driving for these people by stressing that their seizures occur only during sleep and not while drivingnocturnal epilepsy. Sleep lowers the resistance on seizures in people with epilepsy.

            If one continues to drive in the UK they are breaking the law; significant financial fines can be levied. Car insurance is unlikely to cover the person.

            Personal responsibility, ethical behavior and common sense are challenged; abiding by the law often is abandoned as a part of our common humanity.

            My recent blog # 92 on this LanceFogan.com website (Citizens Influence New York State Law:Driving with Epilepsy, March 26, 2018) reviews how a deadly driving accident occurred during an apparent seizure in Brooklyn, NY in March, 2018. It led to a mandatory physician-reporting law being introduced in the New York State Legislature. If passed, New York would be the seventh American state making mandatory physician reporting of epilepsy. More lives then could be protected. 


1.    Epilepsy Action is a UK based charity providing information, advice and support for people with epilepsy. The organisation was founded in 1950 as the British Epilepsy Association and adopted Epilepsy Action as its working name in 2002. Epilepsyaction.org.



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.