Thursday, July 25, 2019

Blog #108: SUDEP—SUDDEN DEATH IN EPILEPSY―OCCURS IN ALL TYPES OF EPILEPSIES



            SUDEP, sudden death in epilepsy, has an incidence of 1-2 cases per 1,000 patients with epilepsy per year.1
            The recent tragic death of Cameron Boyce, a popular 20 year-old Disney star, has brought SUDEP and epilepsy to the public eye.
            A study reviewed 237 SUDEP cases between October 2011 and June 2017 in the North American SUDEP Registry. Subjects were ages 1-70 years, the median age was 26. Women made up 38% of the study population.2  Researchers found that night sleep, usually considered the usual situation related to SUDEP deaths, is not necessarily the most common time when SUDEP occurs. Many patients in this registry died during daytime. Additionally, the mechanism of death may not be due to an obstruction of the airways but more likely is related to cardio-respiratory phenomena.
            The study showed all ages and all epilepsy severeties are affected by SUDEP; it is not restricted to chronic poorly-controlled epilepsies. Anybody with epilepsy can experience SUDEP including patients with well-controlled or benign epilepsies, i.e., those with centrotemporal EEG spikes (the Rolandic Epilepsies that primarily occur during sleep and not while awake). The reported lifetime number of generalized tonic-clonic grand mal seizure counted in the study population ranged from zero to more than 500.
            The most notable observation in the study was that a majority of these deaths occurred in people who did NOT take their last dose of antiseizure medication. This presents a chance to minimize the risk of SUDEP. Take your medications as prescribed!
            Physicians need to discuss the risk of SUDEP with their patients, emphasizing the importance of never skipping an antiseizure medication dose. If your doctor doesn’t bring SUDEP up, YOU, the patient, should ask about it. Minimize alcohol and, additionally, get enough sleep.
            Epilepsy surgery can be curative of epilepsy if you are a candidate. Discuss this option with your doctor. The shorter time interval between the onset of your epilepsy and the epilepsy surgery can achieve better results from surgery.3


1)      Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia 2014;55: 1479-85.
2)      Verducci C, Hussain F, Donner E et. al. SUDEP in the North American SUDEP Registry: the full spectrum of epilepsies. Neurology 2019;93:e226-e236.
3)      Bjelivi J, Olsson I, Malmgren K, et. al. Epilepsy duration and seizure outcome in epilepsy surgery. Neurology 2019;93:e159-e166.



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, June 25, 2019

Blog # 107: A FAMILY DEALS WITH UNRECOGNIZED EPILEPSY

Excerpted from Dr. Lance Fogan’s novel, DINGS  Chapter 23, Part 1


I rarely remembered my dreams, but the images that woke me the night before Conner’s neurology appointment were a nightmare: a horse was chasing me, and no matter how fast I ran I could still feel its steamy breath on the back of my neck. I slipped and fell into an open pit and suffocated at the bottom.
My eyes sprang open. My pillow was damp. I gasped for air and understood: the images represented Conner’s crisis. My mind whirred with questions: what would the neurologist find today? What would he do? Could Conner have a brain tumor, after all?
I couldn’t let go of the deep terror I had felt ever since his seizure. Moreover, it wasn’t just Conner’s seizure; it was our seizure. My seizure. I clasped my sweaty hands on my chest and stared at the ceiling.
I could no longer fight that other memory that was starting to haunt me: Sheila Braun lived next-door to me for a short time when I was in high school. She had epilepsy. She even had to stop driving. I remembered how she sobbed as she told me that she was afraid to have children because she might pass it on when she got married—if ever she got married. I remembered our horror as she showed me awful pictures of epileptics in asylums from a long time ago. I cried with her. I hadn’t thought of Sheila in years.
***
I moved robot-like all morning. I stared at the wall and then out the window. I walked toward the bathroom, stopped, shook my head and turned back to the kitchen. A couple of times I opened the refrigerator and just stood there. Then I closed it without taking anything out. I had to make sure that I had thought of all the questions I was going to ask the neurologist that afternoon. I wandered back to the sink and leaned against the kitchen counter. I clicked my fingernails against my coffee cup and stared out the window.
“Sandra, are you okay?”
I looked at Sam. “This is making me crazy!”
“Sandra—”
“I’ll be right back.” I bolted out of the kitchen and rushed upstairs.
A moment later I was at my desk, pen in hand. I reached for the paper with the questions I had written down days ago. I chewed the end of my pen and reconsidered my questions:
1.   Will Conner ever be normal again? The doctors had warned us that he could have another seizure. Now he was taking those pills with all of those side effects. Would the medicines change him from the sweet little boy that we all knew?
2.   Will people treat him like a freak? Ever since Conner’s seizure, Sam and I had become very cautious around our son. I would gladly have kept Conner home from school or even home-schooled him until he had the appointment with the neurologist. Even Sam had started to coddle the boy: he didn’t let Conner play touch football or soccer or even ride his bike with his friends. That wasn’t like Sam. I was worried that other children would make fun of Conner now.
3.   Could Madison have a seizure? I had read that seizures could run in families; that epilepsy was sometimes passed along genetically. Sam’s brother had one. Was it possible that seizures were contagious, like a cold?
4.   Does Conner have epilepsy?

I took a deep breath and leaned back in the chair. Getting answers to these questions would help me get a sense of control over this new craziness in my life. But would I actually gain control of Conner’s situation? Of that, I had no such delusion.
***
When I returned to the kitchen, Sam was sitting alone over his coffee. He seemed mesmerized by the shadows cast from the window blinds. The stripes just missed the morning paper spread out in front of him.
“Sam? Are you all right?”
“I’m trying not to focus on the appointment. If you must know, it’s all that I can think about.” He lifted the steaming cup to his lips. He leaned back in the chair and stretched his legs out. He stared straight ahead.
I wrapped my arms around his shoulders. “Yeah, I know. Me too.” I took the chair next to him.
“Conner had such a good day on Monday. The kids had been joking and giggling all throughout dinner. Sandra, do you remember how Conner began making those grotesque faces while he tried to knot that cherry stem with his tongue? You know, inside his mouth. The kids laughed so hard, gobs of their hot fudge sundaes sprayed out of both their mouths. Remember? Chopped nuts, whipped cream, ice cream and all. And when you scolded them, it just made them laugh harder. You couldn’t help laughing, too. That was so great.”
His smile faded. He turned the pages of the newspaper without looking down. “After today, do you think we will be able to laugh like that again?”
He stood up. “Okay. Gotta go. I have to visit the new construction site. I’ll be home by two; don’t worry. I won’t be late. I’ll say goodbye to the kids.” He kissed me and left.
***
Sam came home on time as he had promised. I approached Conner’s bedroom; his door was closed. I tried to remember how old I was when I began to shut my door against my parents’ intrusion. He didn’t answer my knock. “Conner, are you ready? It’s time to go.” He didn’t respond. “I’m coming in, honey.” I opened the door.
“I don’t want to go,” he protested. He sat cross-legged on the floor and didn’t look up at me.
“I know, honey. But Daddy and I will be with you. It’ll be all right. We want you to be able to stop those medicines if you don’t need them, and only this neurologist can decide that. He needs to talk to you and find out why that seizure happened.”
“I don’t want any needles!”
“I know. You’ve said that. You know that whenever you had to get a shot or a blood test, it wasn’t so bad. That’s how life is, Conner. Things usually are not as bad as you expect them to be.”
Conner began to hit the floor with both fists. “I’m not going! No! You go!”
Sam called from downstairs, “Let’s go, people! We don’t want to be late. Mrs. Hall just drove up to stay with Madison.”
“I’m not going!”
Sam bounded up the stairs and loomed over his son. “Conner, let’s go. Get up. Right now, son!” He scooped the boy into a standing position. “’Atta-boy!” Conner offered no further resistance—not when his father was in this mood.




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.
 


Wednesday, May 22, 2019

Blog #106: LEARN ABOUT THE FEBRILE SEIZURE



            Young, healthy children can have seizures when they get high fevers such as with ear and upper respiratory infections. These seizures are more likely if family members have had them. Four percent of young children in the United States experience febrile seizures.
            The typical age range is 3 months to 5 or 6 years. The peak incidence of febrile seizures is between 18-22 months of age. They occur during the rising phase of fever and during the first day of the illness. Only one febrile seizure that day is typical. Seizures that occur later in the febrile illness suggest some other condition. Only 2 percent of youngsters who have had a febrile seizure go on to develop epilepsy by age 7 years.1  The possibility of developing epilepsy later in life is increased if there is a prior neurologic developmental abnormality; if the convulsion lasts longer than 3-5 minutes; if convulsive jerking involves just one part of the body (focal) rather than a generalized convulsion; and if the EEG (electroencephalogram) is abnormal.
            Convulsions that occur with fevers after age 5 or 6 years should not be considered benign febrile seizures. These children should receive a thorough evaluation to search for some causative condition and if none is found, then epilepsy is likely. Children who have benign febrile convulsions are not considered to have epilepsy (epilepsy is defined as more than one seizure often due to no identifiable cause).
            Among children who experience their first febrile seizure before their first birthday, half will have at least one more. Among children who are older than 1 year when the first febrile seizure occurs, about 1 in 4 will have more. The overall prognosis, however, is excellent.
            Febrile convulsions are diagnosed when no other condition is present that can cause high fevers and the seizures occur before age six years. Meningitis and encephalitis must be considered. Clinical judgment determines if the spinal fluid is to be examined by a lumbar puncture. Serious causes of a convulsion associated with fever are considered if the convulsion occurs after the initial fever-peak or if there are multiple convulsions. Convulsions associated with a vaccination-induced fever are typically benign febrile seizures unless confused with a rare encephalopathic reaction to the immunization.2
            Acute treatment of the convulsion is usually not necessary unless it lasts 3-5 minutes. Diazepam (Valium) can be administered intravenously, intramuscularly or per rectum. Treatment should be given if it is a prolonged seizure.
            Prophylactic treatment (i.e. daily antiepileptic medications), can be used if the child under 6 years old experiences frequent convulsions during the rising phase of fevers. Daily administration may be indicated because seizures can occur before the fever is detected and then administration of the drug is too late. If prophylaxis is chosen it’s usually continued 1-2 years after the last febrile convulsion and then tapered off over 1-2 months. The problem with prophylactic treatment is that only one-third of the population of young children will experience another seizure with a subsequent febrile illness. There is no evidence that prophylaxis reduces the risk of future epilepsy.
            Risk factors for future epilepsy diagnosis in children who experience febrile seizures includes a family history of non-febrile epileptic seizures, pre-existing neurological conditions or developmental delay, seizures lasting longer than 3-5 minutes, focal localized seizures and multiple seizures in one day.

1.      Nelson KB, Ellenberg JH: Predictors of epilepsy in children who have experienced febrile seizures. N Engl J Med 295:1029, 1976.
2.      Engel, Jr J: Seizures and Epilepsy. Philadelphia, PA: F.A.Davis Co. 1989, p 181-183.




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, April 26, 2019

Blog #105: TRAINING SEIZURE DOGS



      The Epilepsy Foundation visited trainers and staff of Canine Partners for Life, Cochranville, Pennsylvania. This is what they learned about training these amazing seizure-alert dogs:


  • Certified seizure-dog trainers do not require a specific educational degree. However, some states require licensure and others have voluntary certification programs for the dogs. Other states have accredited college and community college programs to train service dogs for various disabilities. 
  •  Seizure-dog resources can be found on line: www.epilepsy.com/learn/seizure-first-aid-and-safety/seizure-dogs/perspective-training-seizure-dogs
  •  Seizure-dogs are trained to help or to alert for help when their human partner is having a seizure. Some animals can even predict a seizure within minutes or an hour before it occurs and warn their handler. How dogs do this is not precisely known. Do they pick up some signal? Do they detect a smell? Can they be trained to detect an imminent seizure or are they born with that ability? Barking and licking are anecdotal tales of dogs responding to seizure-warnings, but even trainers cannot guarantee the dog will predict every seizure.
  •  One facet of training can be to expose the dog to a person who has active epilepsy. That person can judge if the dog reacts in any way prior experiencing an aura or seizure. However, ambulatory EEGs running continuously in a patient with the seizure-dog nearby often show no response in the dog.
  •  Dogs are trained to alert, respond and retrieve items in interacting with their human partner. While any dog can potentially be trained to become a seizure-dog, favorite breeds include Labrador and Golden Retrievers and Collies. Dogs start their training with organizations that provide seizure-dogs as puppies where they are assessed for temperament and personality. Serious specialized training begins around 14 months of age. Dogs are trained to: fetch, push buttons, open doors, turn off lights, pay a cashier and carry things. In harness they can help balance and support their handler. The dogs are placed in their partner’s home to build bonds during training and to learn what their partner needs.
  •  Another useful website to acquire a seizure dog is: assistancedogsinternational.org.
  •  Anyone over 11 years of age and who can communicate at least at a sixth-grade level is eligible to be partnered with a seizure dog because certain levels of maturity/ability are required. The cost of training a dog is around $26,000. Donations subsidize many dogs. The cost to the person with epilepsy ranges from free to $20,000 depending upon ability to pay. 

 

    The impact a seizure dog can have on an individual or family can be life changing. The dog can bring a sense of relief with more safety, independence, confidence and love.


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.