Summer 2004 - FACES (Finding a Cure for Epilepsy and Seizures)

Summer 2004
Volume 13
The mission of faces is to improve the quality of life for all people affected by epilepsy
through research, education and awareness, and community-building events.
Contents
faces Updates ..................... 2
Announcements ................. 3
Research ............................ 4
Epilepsy Surgery and the
Wada Test ........................ 5
Medication Update ............ 6
faces of the Forest.............. 6
Chores for Charity ............. 6
Donations ........................... 7
Behavioral Issues and
Epilepsy .......................... 8
Are Seizures Bad for the
Brain ............................... 9
Anita Kaufman ................ 10
Kashaun’s Story ............... 11
Upcoming Events ............ 12
NYU Contact
Information ................... 12
The faces newsletter is edited by
Christine Toes and
Melissa Murphy
with support from
Daniel Miles, M.D. and
Ruben Kuzniecky, M.D.
Liz’s Story
By Elizabeth Harwick
If someone says, “jump” it is not in my
character to ask “how high?” Thus, when Dr.
Devinsky suggested that I consider brain surgery
I did not ask “when?” but rather “why?” Surely,
I thought, there would be a drug on the market
that could control my seizures. However, I was
becoming very frustrated with my Anti Epilepsy
Drug (AED) therapy program. I was still having
at least three generalized seizures monthly, along
with a lot of partial seizures. My daily routine
consisted of taking a cocktail of drugs with
disastrous results. Either the drugs controlled the seizures with horrendous side effects,
or the side effects were tolerable, but the seizures were not controlled.
Dr. Devinsky recommended surgery at every visit. What finally convinced me to
pursue the surgery was seeing his frustration at the inability of the drugs to control my
seizures. It was evident that I had to seriously consider surgery to improve my quality
of life. I did research throughout the process on the pre-surgical procedures, and the
surgery itself, which kept me sane. I developed an interest in general health issues
because of the research I conducted before my surgery.
I survived the surgery and the doctors were confident that they had removed the
source of my seizures and disconnected the problematic areas that they could not
remove. The real test came the day after surgery. Dr. Devinsky asked me to lift up my
arms, and I did. He and the other doctors were ecstatic (and so was I)!
I was seizure free after the surgery, and I worked tirelessly to obtain my driver’s
license. My joy was short lived. Within a short time, I totaled my car. Although the
accident was not directly related to a seizure, Dr. Devinsky suggested that I stop driving. I was devastated at the loss of my newfound independence, and fought “tooth and
nail” to keep my license. However, I realized that it was not safe for me to drive, I
reluctantly returned my license, and I relocated to a city with a good mass transit
system. I moved to New York and secured a job with The New York City Human
Resources Administration (HRA).
Today, one medication controls my epilepsy. I have not had any major seizures
since the surgery, and only experience very small jerks and weird feelings on my right
side. Having epilepsy has not deterred me from living a full, productive life. I am
grateful that I have a superb medical team monitoring my condition, an interesting job,
a comfortable place to live and a means of transportation that safely maintains my
independence.
Having epilepsy helped me realize that I want to help other people, so I decided to
pursue a Master’s Degree in Public Health. Improving the healthcare system is a
daunting task, but with my determination and life experience, I think I am ready to face
the challenge!
Special thank you to volunteer Sylvia Rothbein for her help on this story.
1
faces Update
Steering Committee
Chair
Orrin Devinsky, M.D.
faces
Program Coordinator
Christine A. Toes
Program Assistant
Melissa Murphy
Lisa Altimari
Jeff Benowitz
Brendan Burne
Larry Davis and Donna Emma
Judy Ebner
Harry Falk
Anna Fantaci
Jane Gilbrt
Peter and Kathy Gogolak
Elizabeth Jarvis
Lynn and Noel Jeffrey
Lisa Krebs Borgen
Ruben Kuzniecky, M.D.
Warren and Kathy Lammert
Leonard and Marilyn Lehrer
Randi and Jeff Levine
I.D. Luckower
Leila Mansouri
Karen Mayerson
Mary Miceli, RN
Daniel Miles, M.D.
Elizabeth Millstein
Nancy Novograd
Lawrence and Gaye Pecker
Sharon Perhac
Jaimee Sabato
Mame Kennedy Schrager
Richard Shane
Remi Silverman
Leslie Smith
Stevie Solomon
Candice Stark
Amy Steinman Cohen
David Swinghamer
Blanca Vazquez, M.D.
Leah and Michael Weisberg
Neil and Stacey Weiss
Richard Wheeless
Donations to faces support epilepsy
research and programs for children
and teenagers affected by epilepsy.
All donations are tax-deductible.
Please e-mail your questions about
faces to
facescoordinator@yahoo.com.
2
The Finding A Cure for Epilepsy and Seizures (faces) gala, held Monday,
March 1, 2004 at the New York Hilton Hotel, raised just under $2 Million for
epilepsy, clinical and basic science research, education, and patient programs.
Dateline NBC’s Stone Phillips was our emcee. A record crowd of nearly 1,200
faces supporters attended the event. Honorary Chairperson Julianne Moore
donated silent auction items from her personal collection to the event’s 500-item
silent auction, and Sotheby’s Vice President, Hugh Hildesley, hosted a spectacular live auction, which included a 1959 Alpha Romeo Spider convertible, a walk
on role on Law and Order, and an autographed Bon Jovi Guitar. Special thanks
to everyone who made this night such a success!
Leah and Michael Weisberg
Nancy Novograd
Gala Chairs
Auction Chair
Golf Classic
The Third Annual
Bentley Long Island
Golf Classic was held
on Monday, June 28,
2004 at Pine Hollow
Country Club. Special
thanks to Bentley for
donating the proceeds
from the event to faces!
Yankees, Mets, and
Liberty Games
Faces would like to thank the
New York Yankees, Exceptional
Parent Magazine, Howard Cowan,
the New York Mets, and the New
York Liberty for donating game
tickets for our summer events for
families affected by epilepsy.
Save the Dates!
Faces will be hosting an event at RexPlex (www.RexPlex.com) in New Jersey
on Saturday, September 18th. For more information and to register, please go to
www.faces.kintera.org/RexPlex.
Art Day
for Children and Teens with Epilepsy
will be held on Sunday, October 24th
at the Children’s Museum of the Arts in SoHo (http://www.cmany.org/).
This fun event will feature great art projects just in time for
Halloween, face painters, and much more!
If you are an artist and would like to volunteer your time to this event,
please contact nyufaces@yahoo.com.
Announcements
Sign Up!
Epilepsy Action
Faces has started emailing out event updates.
Don’t miss out on upcoming events! Send an
email with your name, e-mail address, and
phone number to
facescoordinator@yahoo.com to be added to
our email database. The faces newsletter will
soon be available via email, enabling us to
dedicate less funding to printing and mailing
expenses and more funding to epilepsy research and programs.
Looking for more information about epilepsy? Check out epilepsy information from
the U.K. at http://www.epilepsy.org.uk.
Sign up for Epilepsy Action and receive
great email updates about epilepsy research
and other epilepsy news.
To the Editor
On Sunday, June 6th, 2004, I had the pleasure
of presenting “Epilepsy & Naturopathic
Medicine” at the faces parents’ support group. It
was very gratifying for me to share information
with the parents who attended because I am so
impressed with how motivated they are to find a
cure for their children.
For those of you who were not able to attend, I
would love to hear about your experiences about
epilepsy, specifically about any lab tests that have
been useful to you, and whether you (or your
child) have been tested for cyclic-AMP?
I would like to do research into finding a cure
for epilepsy using natural therapies and I need
your help in order to confirm what further work
needs to be done. Please e-mail me at
drnora@rogers.com and we can begin from there.
Sincerely,
Nora Jane Pope, N.D.
Editor’s Note: Dr. Pope’s presentation slides can
be downloaded at www.nyufaces.org. Special
thanks to Sheila and Bill Lambert for hosting the
Parent’s group!
www.Epilepsy.com
Epilepsy.com has launched a community
forum for those interested in sharing their
experiences and learning more about
epilepsy. The forum provides a virtual
support network for those living with
epilepsy and their loved ones. Discussion
topics range from seizure control to caring
for a child with epilepsy to employment
issues. Participants are welcome to
contribute to an ongoing discussion or to
start a new topic for discussion.
Epilepsytalk
Epilpesytalk is a new Listserv now available
globally to anyone interested in communicating about pediatric epilepsy. PACE (Parents Against Childhood Epilepsy) has underwritten this discussion group for the benefit
of families who wish to share comments,
concerns and questions regarding their experience with children afflicted with epilepsy
and or other related issues.
For more information, send an email to
epilepsytalk@aol.com.
3
RESEARCH
Please email your questions about any of the following studies underway at NYU to epilepsyresearch@med.nyu.edu.
Dr. Nandor Ludvig has been recruited to NYU to
work on a neuroprosthesis device that would
send anti-epileptic medication directly to the brain
upon abnormal neurobiological signals. The aim of
the device, which is currently in the animal testing
phase, is to send medication to the specific area of
the brain where the seizure is originating – seconds
before a seizure would begin. The device would
help to control seizures that are resistant to other
therapies, and would greatly reduce medication side
effects by affecting only a part of the brain, and by
bypassing the liver.
Preliminary results from the neurofeedback
study will be available at the end of the summer.
Psychoeducational Treatment of Psychological
Non-epileptic Seizures
Investigators: William Barr, Ph.D., Charles Zaroff, Ph.D.
Psychological non-epileptic seizures are seizures resulting from emotional stress and not epilepsy. The purpose
of this study is to determine if educational techniques
used in group psychotherapy can reduce psychological
non-epileptic seizures and psychiatric symptoms and
improve coping strategies.
New Location!
The NYU Comprehensive Epilepsy Center will be
opening a new location on 39th Street and
2nd Avenue with a Sleep Center and MEG unit!
Stay tuned for more information!
Herbs: Did You Know?
The NYU Medical Center Food and Nutrition Service lists Goldenseal, one of the 12 most
commonly used herbs, as being a potential cause of seizures. Always consult your physician
before using any herbal remedies!
Faces is working on a Radio Public Service Announcement (PSA)
to educate people about epilepsy.
Do you know someone in radio
who might be able to help get this aired on their station?
Know anyone in Marketing or PR?
Faces is looking for companies who are willing to do pro-bono work
on print Public Service Announcements to educate the public about epilepsy.
We are also looking for publications willing to run these ads.
If you might be able to help out on this project, please contact Christine at
facescoordinator@yahoo.com or at 212.779.2041.
4
EPILEPSY SURGERY AND THE WADA TEST
By Daniel Miles, M.D.
First performed in 1949 by Dr. Juhn Wada, the Wada
Test, also known as the Intracarotid Amobarbital Procedure (IAP), was used in patients with refractory epilepsy
being considered for epilepsy surgery to determine in
which hemisphere the patient’s language was located.
Tests of memory have been added to the study since Dr.
Wada’s initial use of the procedure. Lateralization of
language and assessment of a patient’s memory function
in each hemisphere permit a tailoring of the surgical
procedure to minimize language and memory dysfunction after surgery.
The Wada test lateralizes language dominance and
assesses memory by inactivating or putting one hemisphere
to sleep so that the language
and memory functions of the
opposite hemisphere can be
tested. Inactivation of one
half of the brain is achieved
by injection of a short acting
barbiturate, Amobarbital, or
occasionally another medication with similar effect, into
the carotid artery, the main
artery serving each hemisphere of the brain. The
injection of the medication is
undertaken only after an
angiogram of the brain has
been completed. An angiogram reveals the anatomy of
the brain’s blood vessels,
mapping the flow of blood
through each hemisphere.
This information is important because some individuals
may have variations in blood flow that result in the
injected medication entering the opposite half of the
brain. This would have profound impact on interpretation of the results of the study, perhaps even leading to an
incorrect lateralization of language.
Variations of how the Wada test is done can be found
from one center to the next. These differences may
include the dose of medication used, and the specific
manner in which language and memory are tested. In
general, the patient is prepared by pretest practice so he/
she is familiar with what will take place during the test.
Once the angiogram has been completed and the brain’s
bloodflow patterns demonstrated, the patient is asked to
count and either hold their arms up in the air or squeeze
an object while the injection is given. The onset of the
medication effect is determined by the moment at which
the patient becomes weak on the side opposite of the
injection, and/or stops counting (the latter if the language
dominant hemisphere has been injected). The patient’s
language is then tested by asking them to name objects
and to obey commands. Memory is assessed by the
patient’s ability to recall items
previously shown, and realize
that certain items were not
previously shown. Formation
of new memories may also be
evaluated.
Determination of which
hemisphere supports language,
and the degree to which each
hemisphere maintains memory
permits tailoring of a surgical
resection of seizure generating
brain tissue. A focus of
seizure activity in a nondominant hemisphere in an
individual with intact memory
in the opposite hemisphere
permits a more aggressive or
wider resection of tissue than
might be achieved if the
seizure focus were in the
dominant hemisphere that
supports language, or if memory in the opposite hemisphere is limited.
The Wada test is done in those situations that the
origin of seizure activity is believed to arise from an area
close to centers of language and memory in the frontal
and temporal lobes. The test aids in maximizing the
chance of complete seizure control and minimizing postoperative dysfunction. It is an integral part of epilepsy
surgery evaluation.
“The WADA test aids
in maximizing the
chance of complete
seizure control and
minimizing postoperative
dysfunction.”
5
MEDICATION UPDATE
By Kim Parker, RN
The Federal Drug Administration (FDA) and the Drug Enforcement Agency (DEA) have authorized a New York
City pharmacy to import and dispense clobazam (Frisium) and vigabatrin (Sabril) to patients with a valid prescription and letter of medical necessity from a prescribing physician. US customs is exercising increased scrutiny when
examining packages from overseas such as those from pharmacies in the Bahamas and Switzerland. This could
potentially cause delays or confiscation of medication shipped from overseas. Therefore, patients are advised to use
this pharmacy to obtain these medications.
If you wish to receive your medications from this pharmacy, please contact your physician so that he or she can
provide the pharmacist with a valid prescription and a letter of medical necessity. The pharmacist will then contact
you to arrange for billing and shipment. You will need to provide the pharmacist with your credit card information.
All medications must be mailed directly to your physician’s office, where you can pick them up or arrange for
shipment to your home.
For information regarding cost per pill and shipping fees, please contact the pharmacy directly:
Caligor Pharmacy
(212) 369-6000
Supervising pharmacist: Gary
The “faces of the Forest” mural project was done in conjunction
with art therapy students at the School of Visual Arts. It will go on
display at the new Epilepsy Center location on 39th street and 2nd
Avenue in early Fall.
School Raises Over $2,000 for Epilepsy
The Brunswick Upper School in Greenwich, CT, conducted
a presentation to educate Brunswick Middle School students
about seizures and epilepsy. Special thanks to the students for
their hard work on the presentation and to the Middle and Upper
School students who raised over $2,100 for faces through a bake
sale and “dress down” day! Thanks also to Leslie Andersen,
Head of Student Services, for her work on the project.
Chores-For-Charity: A Community Service Program for Students
If you are a teen and your life has been touched by epilepsy, Chores-For-Charity empowers you to make a
special contribution to Finding A Cure For Epilepsy and Seizures. You can earn community service hours and
even leadership acknowledgement if you bring the program to your school. For more information, please visit
www.ChoresForCharity.com.
6
D
O NSpecialA
T I O N
thanks to our supporters!
S
(November 19, 2003 - June 17, 2004)
General Donations
$500,000+
The Epilepsy Project
$20,000+
CIBC World Markets
James T. Lee
Alice Pollner
$5,000+
Dr. Orrin and Deborah Devinsky
Howard and Sylvia Rothbein
Pfizer, Inc
$500+
Ellsworth and Patricia Brown
Suzanne Davis
Dreyfus
Landfill Technologies Corporation
Mannkraft
Michael and Kristina Niemeyer,
On behalf of their daughter Lauren
Marc and Cathy Solomon,
In honor of Sylvia Rothbein and
Family
$300+
$4,000+
United Way of the Tri-State, Inc.
$2,000+
Ruth Abrams Foundation
ERS Charitable Foundation,
In honor of Emmory Shapses
$1,000+
Cory Carlesimo
Car Program LLC
Geraldine E. Marden
Stone Phillips
Joe and Jill Skornicka
Phillip and Leslie Smith
Howard and Michelle Swarzman
Michelle McDonough
Ilana Rothbein,
www.ChoresForCharity.com
Martin and Jane Schwartz,
In honor of Vanessa Cortesi and
Jonathan Taufman
Joshua Shuchatowitz,
To Drs. Devinsky, Alper and
Najjar- “You are the Best!”
Cathy Solomon
$200+
Irving Cantor
Mary Henderson,
With heartfelt gratitude to Drs.
Weiner and Devinsky
Dr. Eugene and Breena Kaplan
Scott and Liane Stults
James Wylie Fields
John and Donna Tompkins
Dr. Meir Malmazada
In honor of Rita Arnold’s
Birthday
Linda and Dan Abrams
Barbara and Jay Chaskin
Marsha and Irving Cohen
Marilyn Cohen
Howard Cooperman
Lisa and Vincent Disimone
Carrie and Bill Epter
Jane and James Fassler
Barbara Gordon
Marcia and Harvey Jacobson
Carolyn and Steve Kass
Jill Klein
Joan Koff
Zeldie and Milt Linial
Carol and Chuck Lipsky
Annie and Murray Lowenthal
Linda and Richard Melnikoff
Barbara and Larry Newman
Stephanie and David Portman
Seena Puro
Winn Rosenblatt
Abe and Judy Seltzer
Mollie and Jerry Sernall
Lila and Harry Weiner
Linda Wolfson
Some corporations will match your donation!
Check with your company to see if your contribution to faces can be matched.
Although every donation to faces is important, we regret that in order
to keep our newsletter costs to a minimum,
we can only acknowledge donations of $200 or more.
7
BEHAVIORAL ISSUES AND EPILEPSY
By Nidia Ortiz, RN, PNP
Many children with epilepsy also have behavioral issues, and parents
often ask whether these issues are caused by the epilepsy or by the
medications. Unfortunately, there is no simple answer. Behavioral issues
can be caused by many factors, such as frequent seizures, large doses of Anti
Epileptic Drugs (AEDs), brain abnormalities like scar tissue, and the child’s
own anxiety or self-esteem issues. If parents don’t allow the child to
exercise their independence, the child may become frustrated and act out.
Behavioral side effects are often dose-related, which means that as you
increase the dose of the medication, you may increase the behavioral effects
of the medication. The effects are different for each child, but the more
medications the child is on, the greater the chances that they will experience
behavioral side effects.
The most common culprits of behavioral side effects are Barbituates, like
Phenobarbital and Primidone, and Benzodiazapines, like Ativan, Klonopan,
Frisium, and Valium. These medications are not recommended for long-term
use, because they become less effective over time, which causes physicians
to keep increasing the dose of the medication. Some of the behavioral sideeffects you might see from these medications include hyperactivity, irritability,
difficulty with attention span, memory, sleep problems, and mood changes
including depression, slower thinking and movement, decreased motivation,
and memory lapses.
It is important that parents know that physicians look at what types of
seizures the child has to help determine the best medication for that child.
They also consider the drug’s cost, how often it has to be taken, and how it
will interact with other medications that the patient is taking. Physicians try
to balance the seizures and medication side effects with the child’s quality of
life. Sometimes parents don’t realize how badly the medications are affecting
their child until the child is taken off the medication.
As a parent, you can help your physician determine the best medication
for your child by keeping a log or journal of your child’s medications and the
side effects they are experiencing. Try to get as much information as possible
from your child’s teacher about what side effects the teacher notices in the
classroom. At your next visit, you will be better equipped to explain to your
neurologist what side effects your child is experiencing. The physician may
change the medication schedule by spreading the medication out in smaller
doses over the course of the day, or by giving the medication after or with a
meal. If the seizures are happening at night or first thing in the morning, the
physician might prescribe a higher dose of medications at bedtime.
When beginning a new medication, it’s often better to start with a lower
dose and then increase the dose as the child builds up their tolerance to the
medication and its side effects. If the child is having significant behavioral
issues, the child could also be experiencing symptoms of depression. The
depression may need to be treated with medication, counseling or therapy,
which may help with the behavioral issues the child might be facing.
To learn more about medications and their behavioral side effects, please
see the sidebar, or ask your physician or nurse for more information.
8
Some of the most common
epilepsy medications and their
behavioral side effects are:
Zarontin – (used to treat absence
seizures) behavioral changes,
tiredness and dizziness
Neurontin – irritability, hyperactivity
Keppra - irritability—usually with
rapid dose increase, sometimes you
have to wait until the child builds up
a tolerance to it
Gabitril - concentration, irritability, but
may have a positive effect on mood
Topamax – concentration and attention
problems, slowing of thought process,
word recall problems, memory
problems, mood (nervousness,
depression or irritability)
Depakote - irritability, reduction in
attention, speed of thinking
Sabril - usually used with Tuberous
Sclerosis and infantile spasms. Can
cause irritability and depression (can
also cause peripheral vision problems)
Phenobarbital - can cause hyperactivity
in children, irritability (Phenobarbital
stays in the body a long time, so it is
often used for infants)
Benzodiazapines – irritability, drooling,
hyperactivity, impaired attention/
memory, aggression, depression,
also very sedating
Tegretol – not as bad as far as the side
effects of other medications. May
have positive effects on behavior.
Trileptal – a few cognitive side effects
Felbatol – mild cognitive and behavioral
side effects
Dilantin – mild or infrequent cognitive
and behavioral side effects
Lamictal – can be positive for mood,
but you have to increase dose very
slowly to avoid life-threatening rash
Peganone – derivative of Dilantin,
some patients see fewer side effects
on this than Dilantin, but it’s not
used very often
Zonegran – can cause sedation,
especially if you increase it rapidly
ARE SEIZURES BAD FOR THE BRAIN?
By Souhel Najjar, M.D.
Medically refractory partial seizures are
characterized by cell loss and gliosis (scar cells) with
consequences for nerve cell reorganization, excitability,
memory and cognitive functions. Several studies provide
solid evidence for long-term alterations of neuronal
excitability and cognitive capacity associated with
repeated seizures during development. The data raise
concerns about the long-term cognitive consequences of
repetitive seizures, especially in, but not limited to,
developing brains.
Some epilepsy types are more specifically associated
with such nerve cell reorganization, and more
pronounced nerve cell loss such as mesial temporal lobe
epilepsies (MTEs). A radiological and pathological
signature of MTE, hippocampal sclerosis is the prime
example of how repeated
seizures induce neuronal
reorganization and nerve cell
loss. Hippocampal sclerosis
is often associated with
refractory seizures that result
in memory impairment.
Interestingly, a fully
developed hippocampal
sclerosis is infrequently
observed following even a
single prolonged febrile
seizure, which might suggest
the presence of a preexisting
vulnerability for this
condition. Other recent studies
show definitive evidence of
long term effects of even brief
but repetitive febrile seizures
(FS) on memory during early
brain development in rats. Absence seizures (also
known as petit mal seizures), are not considered harmful
to nerve cells since these seizures do not produce
massive excitation of the neurons.
It is worth noting that recurrent seizures in refractory
epilepsies may result in various personality changes and
other psychopathological conditions (20%- 50%). These
changes are more often encountered in temporal lobe
epilepsies. The temporal lobes contain vital limbic
system structures (hippocampus and amygdala) that are
closely involved in emotional behavior. Repeated
seizures in refractory partial epilepsies can cause
pathological changes that affect these structures, which
can result in personality disorders, affective disorders
(depression 18%, anxiety 20%, fear, paroxysmal
irritability 30%, and euphoric moods), and even
psychosis (8-10%). The strongest risk factors for
psychosis in epilepsy are those that indicate severity of
epilepsy, including long duration of active epilepsy,
multiple seizure types, and poor response to drug
treatment.
Mechanisms mediating the harmful effects
of repeated seizures
Excessive nerve cell excitation due to potentiation of
N-methyl-D-aspartate (NMDA) receptors (excitatory
receptors), appears to be the
main culprit that irreversibly
damages nerve cells.
Numerous studies show that
NMDA receptors play a
prominent role in the
neuropathology and the
pathogenesis of epilepsy.
Several studies show that
NMDA provoked seizures,
induced early in the developing
rat brain, are followed with
subsequent deficits in spatial
learning and an increased
susceptibility to seizures in
adulthood. Furthermore, the
activation of intrinsic
inflammatory cells (so-called
microglial cells), the
production of inflammatory/toxic molecules (so-called
cytokines) by these cells, the breakdown of the bloodbrain barrier, and calcium dysregulation, are welldocumented abnormalities in epileptic tissue, and may
play a role in nerve cell injury.
The above data suggest that early effective medical,
and at times surgical, treatment for refractory epilepsy is
essential to limit potential irreversible nerve cell injury,
and its related progressive neurological, cognitive, and
neuropsychiatric effects caused by repeated seizures.
“It is worth noting that
recurrent seizures in
refractory epilepsies
may result in various
personality changes
and other
psychopathological
conditions (20%-50%).”
9
Anita Kaufman Foundation Strives to Educate
Public About Epilepsy
Anita Kaufmann had epilepsy but it didn’t stop her from having a successful career as a lawyer and owner of one of the top legal recruiting firms
in NYC. Several experiences in which she had seizures and people reacted
negatively to her taught her how terrible the stigma faced by people with
epilepsy could be.
Anita passed away on November 26, 2003. She left her estate to The
Anita Kaufmann Foundation whose mission is to educate the public about
epilepsy in order to obtain acceptance of people with epilepsy by society.
Anita’s childhood friend, Debbie Josephs, is administering the Foundation, and has teamed with faces to present the scholarship contest below. For
more information about the Foundation and the contest, please visit
www.theanitakaufmannfoundation.org.
The Anita Kaufmann Foundation and
faces (Finding A Cure for Epilepsy and Seizures)
present
A Scholarship Contest for
High School Juniors and Seniors
One 1st Prize
One 2nd Prize
One 3rd Prize
Four 4th Prizes
Subject:
$5,000
$3,000
$1,000
$500
How to Teach High School Students Not to Fear Epilepsy
Guidelines: Create a 250-500 word essay, poster, play, song, poem, script for a school assembly, public
service announcement, documentary video, educational seminar, feature article, website or
another way to teach high school students about seizures and how not to fear epilepsy. Points
will be awarded for effectiveness, practicality, originality, and feasibility of your project. No
GPA requirements. No SAT requirements.
Deadline:
December 31, 2004
Entries become the property of the contest sponsors and may be used in a curriculum to teach students
about epilepsy. Winners will be notified by April 15, 2005.
Please send submissions to:
10
NYU-faces (Contest)
11 E. 32nd Street, Basement Office
New York, NY 10016
KASHAUN’S STORY
By his mom, Ernette Barnes
My name is Ernette Barnes and I am the
single mother of three children. My nine-yearold son, Kashaun, was diagnosed with Lennox
Gasteau Syndrome as a result of the varying
types of seizures he has experienced.
My mother cares for my children while I
work. She was the first to notice prolonged
staring and believed Kashaun was having seizures. I scheduled an appointment with my
pediatrician who said that my son was simply
“ignoring me.” I knew that was not the case and
sought a second opinion from an MD who gave
Kashaun breathing exercises to induce his “staring episodes.” As a result, she referred me to a
neurologist who administered an EEG. While
the result of the test was normal, it was at this
Latuan, Kashaun and Ernette Barnes.
time that we found out he was having petit-mal
seizures. He was prescribed Zarontin liquid at first, then capsules. The neurologist explained that, in all likelihood,
my son would grow out of his seizures. For two years, his seizures were controlled by the medication.
In 1999, while crossing the street, Kashaun’s arm went limp. By the time we made it to the sidewalk, he had
fallen to the ground. This was his first grand-mal seizure. I called 911 and my son was helped into a nearby store.
His tremors had stopped, but he was non-responsive. He was taken to the nearest hospital and was stable for two
hours, but then he suffered four grand-mal seizures in a row. An EEG revealed abnormal results and we added
Depakote sprinkles to his medications.
We lived through the many side effects of the medications. The Depakote left him dazed and drowsy. On
Celontin he started having drop attacks. Keppra gave him severe mood swings, so we took him off Keppra and put
him on Zonogran.
In response to the many side effects my son was experiencing, I started to research possible alternatives to
medication. We learned about the Vagas Nerve Stimulator (VNS) and found that my son was a good candidate. In
June, 2003, Kashaun had the surgery and his quality of life has improved immensely.
During the past year my son has enjoyed meeting other children with epilepsy through faces. It has truly been a
blessing to meet other parents that are faced with the same issues as my family.
For more information on the Vagus Nerve Stimulator, go to www.vnstherapy.com.
Special thanks to Liz Jarvis for her help on this story.
Save the Date!
Faces is hosting an event at RexPlex in New Jersey
on Saturday, September 18th, from 11am until 3 pm.
The event will include great food, an obstacle course, bumper cars, video games, deck hockey, face
painters, and much more! For more information and to register, please visit www.faces.kintera.org/
RexPlex or go to www.RexPlex.com to learn more about what this great venue has to offer!
11
Upcoming faces Events
Saturday, September 18
Game Day at RexPlex (NJ)
NYU Comprehensive Epilepsy Center
403 East 34th Street, 4th Floor
212.263.8870 (phone) 212.263.8341 (fax)
www.faces.kintera.org/RexPlex
Orrin Devinsky, M.D.
212.263.8871
Saturday, October 16
Kenneth Alper, M.D.
212.263.8854
Epilepsy Conference at NYU
Werner Doyle, M.D.
212.263.8873
Ruben Kuzniecky, M.D.
212.263.8870
Josianne LaJoie, M.D.
212.263.8318
Sunday, October 24
Daniel Luciano, M.D.
212.263.8853
Art Day for Kids & Teens
Nandor Ludvig, M.D.
212.263.2168
at the Children’s Museum of the Arts in SoHo
Melissa Mendez, M.D.
212.263.8870
Daniel Miles, M.D.
212.263.8318
Souhel Najjar, M.D.
212.263.8872
Steven Pacia, M.D.
212.263.8875
Melanie Shulman, M.D.
212.263.8856
Anuradha Singh, M.D.
212.263.8311
Ravi Tikoo, M.D.
212.263.8318
Blanca Vazquez, M.D.
212.263.8876
Howard Weiner, M.D.
212.263.6419
William Barr, PhD
212.263.8317
Eric Browne, PhD
212.263.8859
Chris Morrisson, Ph.D.
212.263.8317
Roseanne Mercandetti, RN
(Manager CEC)
212.263.8321
Barbara Clayton, RN
212.263.8871
Maria Hopkins, RN
212.263.8359
Mary Miceli, RN
212.263.8359
Charles Zaroff, PhD
212.263.8317
Kim Parker, RN
212.263.8871
Alyson Silverberg, RNNP
212.263.8873
Pat Traut, RN
212.263.8871
Peggy Guinnessey, CTRS
212.263.8782
John Figueroa, CSW
212.263.8871
www.faces.kintera.org/Fall04
Christine Toes
Melissa Murphy
nd
11 East 32 Street, Basement Office • New York, NY 10016
212.779.2080 or 2041
facescoordinator@yahoo.com
nyufaces@yahoo.com