Epilepsy News 3-4-2010
Local Pediatric Epilepsy Resource Site
Epilepsy Online is an extensive webpage created to gather resources targeting children and families dealing with epilepsy. The page,
www.chadkids.org/epilepsyonline, includes an extensive and downloadable Resource Guide. The site is dedicated to ensuring that families have access to the best and most reliable resources for caring for a child with epilepsy or seizures.
Families everywhere know it's expensive to care for a child with a chronic illness and those costs extend well beyond prescription refills and doctor visits. The isolation can be overwhelming; information, education and community support can be in short supply. Epilepsy Online can help connect patients, families and health care providers with local, national and online resources.
Epilepsy Online was developed through Project Access with the Hood Center for Children and Families and CHaD, Children's Hospital at Dartmouth.
National Resources: There is a nationwide network of communities working together for those living with epilepsy. These resources offer an opportunity to share with others what it's like living with epilepsy, giving you the chance to make connections with advocacy and family partnerships and organizations, summer camps and regional epilepsy foundations.
Online Resources: With links to secure chat rooms, international sites, educational resources and interactive sites, these resources provide not only information about pediatric epilepsy but also a safe place to interact with others who are in the same situation as you and your family.
Medication Assistance: Highlights the best programs for financial support and prescription information.
Podcasts and Videos: Experts from DHMC and Project Access offer advice an dinformation for parents and medical professionals about the intricacies of epilepsy and caring for a child with a seizure disorder. New topics are posted regularly. Join the Dartmouth-Hitchcock channel on YouTube.com for more epilepsy videos.
CDC Releases Report on Effects of Swine Flu in Children
Atlanta, GA. Sept. 4, 2009--The Centers for Disease Control (CDC) released a study today detailing the effects the swine flu (H1N1) has had on children in the United States. The study results were released in the Sept. 4, 2009, issue of CDC's publication,
Morbidity and Mortality Weekly Report.
As of August 8, 2009, 477 deaths have been associated with 2009 pandemic influenza A (H1N1) virus infection in the United States, including 36 children younger than 18 years. Based on studies from previous influenza outbreaks, children aged younger than 5 years or with certain chronic medical conditions are at increased risk for complications and death from influenza. Sixty-seven percent of children who died had at least one chronic high-risk medical condition. Neurodevelopmental conditions, such as developmental delay, epilepsy, and cerebral palsy, were the most frequently noted chronic medical conditions, reported in over 90 percent of children with a chronic medical condition. A number of children also had bacterial infections, including most childrren who were older than 5 years and did not have high-risk medical conditions. This finding suggests that bacteria, in combination with H1N1 influenza, can cause severe disease in children who may be otherwise healthy.
The CDC advises:
Any child, even previously healthy children and especially those with chronic medical conditions, can have severe illness or even death from 2009 Pandemic influenza A (H1N1). All children aged 6 months and older should receive 2009 pandemic influenza A (H1N1) vaccine when it becomes available, and children with high-risk medical conditions should immediately consult with a health care provider if they develop an illness consistent with influenza.
For more information on the swine flu visit:
To read the full report visit:
Epilepsy on the cover of Newsweek!
The cover article of Newsweek declares: "Why we must find a cure!"
The health section of the April 20, 2009 issue of Newsweek has several articles about epilepsy. The cover article is an overview of the unrecognized impact of epilepsy, the second article features personal stories and the third article is by Susan Axelrod (founding member of CURE, Citizens United for Research in Epilepsy).
CNN Reports Epilepsy Data
-- An estimated one percent of adults have active epilepsy, and many of them are getting insufficient treatment, according to a 19-state survey released Thursday.
The CDC study found one in six adults with active epilepsy and had recent seizures were not taking medication.
A follow-up survey is planned to determine why so many people with seizure disorders said they had not seen a specialist in the past year, Kobau said.
"This is a highly specialized field," said Eric Hargis, the president and CEO of the Epilepsy Foundation, which collaborated with the authors of the study. "It's not possible to get state-of-the-art care" for the disorder from primary care doctors.
One in six (16.1 percent) adults with active epilepsy with recent seizures said they were not taking their medication and two-thirds (65.1 percent) said they had had more than one seizure during the prior month.
More than a fifth (20.4 percent) said cost was a barrier to seeking care from their doctor.
Access to high-quality care is key to quality of life, Kobau said. People with recurrent seizures face substantial impairments in their daily activities; many are not allowed to drive and, as a result, depend on public transportation. In some areas, particularly rural ones, that can present a barrier to full participation in life, she said.
That's not all. In addition to carrying stigma, people with epilepsy were more likely to live in households with the lowest annual incomes and to report being unemployed and unable to work.
According to the 2005 findings, 1.65 percent of the population said they had been told by a doctor that they had epilepsy or a seizure disorder, the report said. Half of that group (0.84 percent) said they had active epilepsy -- defined as having had one or more seizures during the prior three months or currently taking medication.
If the findings translate to the general population, that means a stadium filled with 60,000 people would contain 480 people with active epilepsy, Kobau noted, adding, "Epilepsy is not rare."
But that view was disputed by Dr. James King, a family physician in Selmer, Tennessee, and president of the American Association of Family Physicians.
"There are patients that can be managed fairly simply with seizure disorder," he said in a telephone interview. "In my own personal practice, I'd say that I can manage at least half, if not more, of the patients that have seizure disorder."
Many of the others are able to get by with just a one-time visit to a neurologist, said King, whose practice is 50 miles from the nearest neurologist, and 100 miles from the nearest neurologist who accepts Medicaid, the government program for the poor.
"There's only a handful of patients that are managed in my area by the neurologist." He said financial barriers -- from insurance to the cost of anti-seizure medication -- are a bigger problem.
"If you can't afford to buy it -- which is what I run into with a lot of the seizure medicine -- it doesn't really matter" if patients see a neurologist or a family physician, he said.
Many patients, forced to choose between paying their light bill or taking their anti-seizure medication, choose the former, King said.
Epilepsyis a condition in which the normal activity of the brain malfunctions, causing recurrent seizures -- electrical storms in the brain -- that can be characterized by a range of symptoms, including sudden change in awareness, movement or sensation.
Each year, about 200,000 people in the United States are diagnosed with the disease, as was Supreme Court Chief Justice John Roberts after he suffered a seizure last year at his Maine vacation home.
"Many people with epilepsy do lead normal, productive lives despite the hardship of having this disorder," Kobau said.
The study, conducted by the federal government and published in the CDC'sMorbidity and Mortality Weekly Report, estimates that 2.7 million people in the United States have epilepsy, and that it costs some $15.5 billion in medical care and lost or reduced earnings or productivity each year.
Hargis said the incidence of the disorder is expected to climb among veterans returning from Iraq or Afghanistan, where head injuries are common. "When you have a head injury, it's common for epilepsy to develop after a gestational period -- it could be a couple of months or it could be years," he said.
And the aging population is also expected to boost the incidence of epilepsy. Conditions of aging, such as stroke and Alzheimer's Disease, are also associated with a higher incidence of epilepsy.
The study was based on data from more than 120,000 adults in the Behavioral Risk Factor Surveillance
Driving Habits of People with Epilepsy
By Ohio State University Medical Center
Jul 1, 2008 - 2:05:09 PM
(HealthNewsDigest.com) - COLUMBUS, Ohio – Research shows that people with epilepsy continue to drive despite medical restrictions. In a study from the Ohio State University Medical Center, 26 percent of patients with epilepsy reported having an accident due to a seizure and 19 percent said they were dishonest about seizures in order to drive.
The study, published in the journal Epilepsy and Behavior, found that prior attitudes and behavior are difficult to change and participants’ main reason for driving was due to their occupation.
“Instead of focusing on the dangers of driving for patients, it is important to discuss with patients how to overcome perceived and actual barriers to transportation,” says Lucretia Long, author of the study and assistant professor of neurology at The Ohio State University Medical Center. “Addressing health behaviors while counseling persons with epilepsy is also crucial.”
The study also suggests that persons with epilepsy would benefit from employers’ assistance with workplace programs and legislation supporting transportation resources. Allowing people with epilepsy to work from home and providing adequate public assistance are a few options.
The study found that 35 percent of patients said they were not confident to use public transportation. Some feared the possibility of having a seizure, which increases the risk for injury while walking to public bus stations. In addition, a large percentage felt that family and friends were not available to assist with transportation needs.
John Elliot is the co-author and clinical research data manager in the Department of Neurology at The Ohio State University Medical Center.
The study included a total of 213 participants who were asked to complete a 46-item questionnaire with all responses submitted anonymously.
Epilepsy can result from head injuries, lack of oxygen during birth, brain tumors and strokes. However, according to The Epilepsy Foundation, the cause of epilepsy is unknown in 7 out of 10 people. Furthermore, epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke. This disorder affects more than 326,000 children under age fifteen and more than 90,000 of them have severe seizures that cannot be adequately treated.
House votes to expand disabilities law
By Jesse J. HollandAP Labor Writer /June 25, 2008
WASHINGTON—People who take medicine to control epilepsy, diabetes or cancer or use prosthetic limbs or hearing aids could use the Americans With Disabilities Act to fight workplace discrimination under legislation the House passed Wednesday.
Lawmakers said the Supreme Court has limited the ADA's reach since it was signed into law by the first President Bush in 1990. "For some the ADA is failing to live up to its promise," said Rep. Howard "Buck" McKeon, R-Calif., top Republican on the House Education and Labor Committee.
The bill, passed 402-17, is designed to bring people back under the ADA's protection. It now goes to the Senate for consideration.
The ADA is probably best known for requiring wheelchair ramps at many public buildings. But it also bans discrimination against the disabled on the job and elsewhere, and obligates employers to make accommodations for disabled workers.
But since 1999, the Supreme Court generally has exempted from the law's protection people with partial physical disabilities as well as people with physical impairments that can be treated with medication or devices such as hearing aids.
"Now what kind of person on the Supreme Court of the United States has some difficulty understanding that if you have to use a hearing aid, that does not lessen the nature of the disability?" said Rep. John Conyers, D-Mich., chairman of the House Judiciary Committee.
As a result, people with epilepsy, diabetes, cancer, cerebral palsy, and developmental disabilities are in a situation where they would be considered disabled if they did not take medication, but might not qualify for ADA protection if they did, said Rep. Betty Sutton, D-Ohio.
"This is completely at odds with the original intent of Congress and the original focus of the ADA," she said.
Lawmakers also modified the ADA to describe a disability as any physical or mental impairment that "materially restricts" a major life activity as a disability. The current wording is "substantially limit," a classification the court said limited the law's scope.
"Today's bill makes it clear that Congress intended the ADA's coverage to be broad and to cover anyone who faces unfair discrimination because of a disability," said Rep. James Sensenbrenner, R-Wis.
With this bill, the Supreme Court would not have to guess who Congress intended the ADA to cover, said Rep. Roy Blunt of Missouri, the second-ranking Republican.
The White House said it supports the legislation, even though it wants some changes. The Bush administration is working to update ADA regulations and this month proposed an overhaul of public access rules.
The bill has the support of business groups such as the U.S. Chamber of Commerce, which said the proposal "represents a balanced approach to ensure appropriate coverage."
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On the Net:
Information on the bill, H.R. 3195, can be found at http://thomas.loc.gov
Americans with Disabilities Act: http://www.ada.gov/
Pfizer Addresses Changes in Manufacturing of Dilantin.
The following is a letter from Prizer:
"Last fall, Pfizer sent a letter to health care professionals informing them that the FDA had approved manufacturing changes for Dilantin® (phenytoin sodium). Because Dilantin® has been continuously produced since 1938, some aspects of its manufacture did not reflect the latest technological advances. The FDA requested that Pfizer update its manufacturing processes and make procedures consistent, and Pfizer agreed with that request.
"As a result of this updated manufacturing method, Pfizer discontinued manufacturing Dilantin® Kapseals® (extended phenytoin sodium, USP) 100 mg capsules and began manufacturing and distributing Dilantin® 100 mg Extended Oral Capsules. It's important to note that Dilantin® Capsules contain the same active (100 mg extended phenytoin sodium) and inactive ingredients (lactose monohydrate, NF; confectioner's sugar, NF; talc, USP; and magnesium stearate, NF) as Dilantin® Kapseals® .
"Pfizer conducted two bioequivalence studies comparing the rate and extent of absorption of Dilantin® Kapseals® and Dilantin® Capsules. Bioequivalence is recognized by the FDA and is considered worldwide to be a valid substitute for therapeutic equivalence. The bioequivalence studies conducted by Pfizer showed that the Dilantin® Capsules met FDA standards for bioequivalence to the Dilantin Kapseals®, and FDA granted Pfizer the authorization to market Dilantin® Capsules.
"While the products are 'pharmaceutical equivalents,' phenytoin sodium is a drug product that has a narrow therapeutic index (NTI). Due to the NTI, therapeutic drug monitoring is essential for any patient during treatment with phenytoin sodium. For this reason, patients transitioning to Dilantin® Capsules should continue to have therapeutic drug monitoring. This monitoring should be done according to the judgment of the physician. Patients taking phenytoin should be advised to inform their physician of any change in seizure control, any new clinical condition or any new medication.
"Dilantin is an important medicine that helps patients with a serious medical condition. Pfizer is committed to ensuring the availability of a product that is safe and efficacious for patients and that complies with FDA's current Good Manufacturing Practices standards."
Brain Pathway That Shuts Down Seizures Identified
ScienceDaily (Jun. 10, 2008)— Researchers at the University of Iowa and the Veteran
s Affairs Iowa City Health Care System have uncovered a brain pathway that shuts down seizures.
The multidisciplinary team of scientists pieced together information from clinical observations made in the first half of the 20th century with knowledge from modern genetics and molecular biology to show that an acid-activated ion channel in the brain reacts to a drop in pH (increased acid) in a way that shuts down seizure activity.
The link between low pH in the brain and seizure termination was first hinted at nearly 80 years ago when clinical experiments showed that breathing carbon dioxide, which makes brain tissue more acidic, helps stop epileptic seizures. Subsequent studies in the 1950s found that seizures themselves reduce brain pH. However, it was the modern discovery of an acid-activated ion channel (ASIC1a) in the brain that provided the key to the UI discovery, which is reported in Nature Neuroscience Advance Online Publication on June 8.
"We found that ASIC1a does not seem to play a role in how a seizure starts, but as the seizure continues and the pH is reduced, ASIC1a appears to play a role in stopping additional seizure activity," said Adam Ziemann, a student in the Medical Scientist Training Program at the UI and co-lead author of the study.
Specifically, the study shows that mice without the ASIC1a gene have more severe and longer seizures than mice with the gene. In addition, chemically blocking ASIC1a increases the severity and duration of seizures in mice with the gene. Conversely, increasing the expression of ASIC1a in mice protects the animals from severe seizures.
The team also showed that reducing the pH in slices of brain tissue expressing ASIC1a reduced seizure activity, but acid had no effect on seizures in tissue without the protein.
When the team measured pH in mouse brains, they showed that seizures lower the pH to levels that can activate ASIC1a channels. They also found that breathing carbon dioxide causes an additional rapid drop in brain pH, and that breathing 10 percent carbon dioxide was sufficient to protect mice with the ASIC1a protein from lethal seizures.
"In seizures, ASIC1a appears to be activating inhibitory neurons," explained John Wemmie, M.D., Ph.D., senior study author and assistant professor of psychiatry in the UI Roy J. and Lucille A. Carver College of Medicine, and a staff physician and researcher at the VA Iowa City Health Care System. "This is the first study to show that ASIC1a activation can have an inhibitory effect."
"One of the most exciting aspects of the work is that it highlights the potent anti-epileptic effects of acid in the brain -- effects that have been recognized for nearly 100 years but until recently have been poorly understood -- and it identifies ASIC1a as a key player in mediating the anti-epileptic effect of low pH," Ziemann said.
"We don't know yet, but presumably there might be examples where the seizures don't stop because of a deficit in this pathway," Wemmie added.
Seizures involve abnormal synchronous firing of groups of neurons, which can cause physical symptoms such as spasms or convulsions and, in the most serious cases, altered control of vital bodily functions, like breathing. Approximately 2 to 4 percent of people will have a seizure at some point in their lives. People who have epilepsy experience repeated seizure activity.
Although the vast majority of seizures are self-limiting and stop by themselves, seizures that don't stop can develop into a life-threatening condition called status epilepticus with a mortality rate of up to 20 percent.
"The discovery helps explain why breathing carbon dioxide stops seizures, which might stimulate the use of carbon dioxide for stopping seizures, Wemmie said. "However, although this work provides insight into how seizures normally stop and might help us learn more about how to terminate those seizures that don't stop, it will take more work to turn the finding into a new therapeutic approach. We will be working with colleagues in neurology and neurosurgery to try and translate the findings to treatments."
Ziemann noted that a particular strength of neuroscience research at the UI is the close interaction between faculty doing cutting-edge human studies and those pursuing basic science.
In addition to Wemmie and Ziemann, the UI research team included Michael Schnizler, Ph.D., who is co-first author of the study and was a postdoctoral fellow at the UI; Gregory Albert, M.D.; Meryl Severson, M.D.; Matthew Howard, M.D., professor and head of neurosurgery who holds the John C. VanGilder Chair in Neurosurgery; and Michael Welsh, M.D., co-senior author of the study who is a Howard Hughes Medical Institute investigator and UI professor of internal medicine and molecular physiology and biophysics. Welsh also holds the Roy J. Carver Chair of Internal Medicine and Physiology and Biophysics.
The study was funded by grants from the National Institute of Neurological Disorders and Stroke, the VA and the UI Carver College of Medicine.
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"This is the first time that we actually have data from multiple states," said Rosemarie Kobau, lead author of the Centers for Disease Control and Prevention study, in a telephone interview. "What we learned is that, among adults with active epilepsy, more than a third of them reported not seeing a specialist for their epilepsy, and that's really unacceptable."