FEBRUARY 2014 FACES E-NEWSLETTER
- CEC SPOTLIGHT: MISTY TORRES-RIVERA
- RECIPE OF THE MONTH
- CAN I DRIVE?
- FACES CLUB
- THE RNS SYSTEM
- OVERVIEW OF THE 2013 AMERICAN EPILEPSY SOCIETY MEETING
- WERNER DOYLE, MD GIVES A TED TALK
- FUNDRAISING CORNER: FUDGERAISER
- FACES APARTMENTS 2013 STATISTICS
- NEW AT FACES: THE FACES PET RELATIONSHIP PROJECT
- THE FACES PET RELATIONSHIP PROJECT - KEEPING FAMILIES CONNECTED
- RESEARCH UPDATE: NYU ECoG GROUP
- LETTERS OF HOPE
- FACES NOTEWORTHY PRESS
1) CEC SPOTLIGHT: MISTY TORRES RIVERA
Misty Torres-Rivera is an Administrative Assistant at NYU’s Comprehensive Epilepsy Center. She first joined the group in 2005 and assists neurologist, Steven Pacia, MD and neurosurgeon, Werner Doyle, MD. She coordinates both doctors’ patient schedules, translates medical procedures for international patients, requests prescription refills and provides general assistance for patients.
Throughout the years, Misty has developed strong bonds with patients that she assists on a daily basis. She strives to provide them with a smooth experience as they cope with their medical condition. Misty’s job dedication shows through her daily performance at the office. “I’ve grown emotionally invested to each patient who sees Dr. Pacia and Dr. Doyle”. Not only has Misty connected with each patient, but she also takes pride in the work she does 5 days a week. Her passion for working at the center is evident each day. Misty comes to work determined to assist patients of the Epilepsy Center in any possible way.
2) RECIPE OF THE MONTH
By: Jessica Widom
BUTTERNUT SQUASH MACARONI AND CHEESE
February is Heart Health Month; an important time for promoting awareness and sharing life-saving tools related to cardiovascular disease. Currently, in this country, heart disease is the leading cause of death for both men and women. Fortunately, making healthy meal choices can make a significant difference in helping you to avoid heart disease and its complications. Choosing foods that are low in saturated fat and high in fiber can help prevent high cholesterol. Similarly, limiting salt in your diet can serve to lower blood pressure.
With that in mind, this dish couldn’t come at a more perfect time. Butternut squash mac and cheese offers a healthy twist on a comfort-food classic, satisfying even the pickiest of palates while simultaneously offering a nutritional punch. This hearty entree retains the color and creaminess of traditional macaroni and cheese, while losing the gratuitous fat that the old school version so often comes with.
The star of this dish, butternut squash, is low in fat and high in dietary fiber, potassium, and vitamin A. On top of that, it is naturally high in carotenoids, known to protect against heart disease, making this dish particularly fitting for heart health month. If that weren’t enough, butternut squash is known for being rich in antioxidants. A single serving of this deliciousness will provide a significant amount of antioxidant-rich vitamin C, working to help your body reduce inflammation and boost your immune system at the same time.
Nutritional analysis (per serving) 224 calories, 4g fat, 3g fiber, 10g protein
3 cups butternut squash, cubed and peeled
1⁄2 cup reduced sodium chicken broth
1⁄2 cup skim milk
2 garlic cloves
1⁄4 cup plain non-fat Greek yogurt
1⁄2 teaspoon black pepper
3⁄4 cup shredded gruyere cheese
1⁄4 grated parmesan cheese
1⁄8 cup bread crumbs
3 cups whole wheat penne noodles
Preheat oven to 375 degrees F. In a large pot, combined cubed butternut squash, chicken broth, milk and garlic and bring to a boil. Reduce heat and simmer for 20 minutes, until squash is tender. Remove from heat. Add Greek yogurt, pepper and using an immersion blender, puree until smooth (alternatively, you could add the mixture to a blender or food processer). Stir in gruyere cheese until melted and then fold in pasta. Pour everything into a 13 x 9-inch baking dish. Bake for 18-22 minutes. Remove from oven and turn oven to Broil. Sprinkle parmesan cheese and bread crumbs over pasta and return to oven for an additional 5-7 minutes until cheese has browned and noodle edges are crispy.
3) CAN I DRIVE?
By: Kimberly Parker-Menzer, NP
For many, driving is a vital function of everyday life. However, if you experience seizures that involve alteration in or loss of consciousness or body control, your legal right to drive may be restricted. The good news is that having had a seizure in one’s lifetime is not a permanent obstacle to driving.
It is important to understand that the state that issued your driver’s license determines the criteria for operating a motor vehicle with a history of seizures. A general fact common to all state Department of Motor Vehicles (DMV) is the restriction for an individual having active seizures involving alteration in or loss of consciousness. The required “seizure free” period before a license is reinstated varies from state to state, however many average six months. Individuals with epilepsy must notify the licensing state of their medical history when applying for a driver’s license, as well as when renewing. Your provider can review the state law with you in regards to your specific condition, and will instruct you not to drive according to the state law if applicable. Furthermore, mandatory physician reporting is required in some, but not all states. This means that in some states either the emergency room physician treating you after a seizure or your neurologist is required by law to report your seizure to the DMV. While other states may not have this requirement, providers, as well as anyone, can report seizures to the DMV on a case by case basis if there is concern that someone who is experiencing active seizures is continuing to drive. As a licensed driver, you are legally responsible for following the rules of the body that has authorized you to drive. “Medical review forms” provided by your state DMW, help your practitioner to make recommendations to the DMV as to when he/she believes you are cleared to drive, however the final determination is made by the DMV.
Unfortunately, there have been many cases when an individual with epilepsy has driven against medical and DMV recommendations, or during a time when they are at high risk for seizures (after missing meds, consuming alcohol the night prior, with sleep deprivation) and accidents have occurred. Many such accidents have resulted in injury or death to the driver or innocent others on the road. Individuals with epilepsy should use common sense when they have been cleared to drive by the DMV and avoid driving after missing meds, while sleep deprived, and the day after consuming more than two alcoholic beverages—as these are times when they are more apt to experience a seizure. Driving under the aforementioned circumstances is taking a chance not only with one’s life, but with all others that share the road. At the minimum, there are legal ramifications of any accident, and the worst case scenarios can shatter lives. While all who live with or treat individuals with epilepsy advocate for life without restrictions, DMV laws regarding driving with epilepsy are to protect all on the road.. including YOUR loved ones.. and should be abided by.
For more information regarding the DMV laws in your state, or to access medical review forms, please look on your state DMV website.
4) FACES CLUB
FACES has received a lot of feedback from the epilepsy and seizure community suggesting ways in which patients and their siblings can get more involved in volunteering, raising awareness and funds for our organization. In addition, many of our FACES parents frequently call the office looking for community service projects for their children. With these requests in mind, we are pleased to announce the launch of the FACES Club Starter Kit. The premise is simple – uniting a group of students who are interested in the common goal of raising epilepsy and seizure awareness as well as funds at their school. Please click here to download a copy of our starter kit and one sheet. It is chock full of information on how to start a club at your school! Note that FACES is here to support you...every step of the way!
5) THE RNS SYSTEM
The Department of Neurosurgery, the Comprehensive Epilepsy Center at NYU Langone Medical Center, Drs. Eric Geller, Orrin Devinsky and Werner Doyle are thrilled to announce a long anticipated surgical approach to the management of treatment resistant epilepsy.
On November 14, 2013, the U.S. Food and Drug Administration granted approval for the NeuroPace RNS System to treat Medically Refractory Epilepsy, or partial onset seizures that have not been controlled with two or more antiepileptic drugs. This surgical therapy is different than established epilepsy surgery in that it does not involve any brain resection (removal) and is therefore possibly safer and less invasive for many patients. It is used alongside established surgery and appropriate work up that is individualized for each patient.
The RNS System is a novel technology that provides responsive brain stimulation through an implantable therapeutic device that delivers responsive neuro-stimulation, an advanced technology designed to detect abnormal electrical activity in the brain and respond by delivering imperceptible levels of electrical stimulation to normalize brain activity before an individual experiences seizures. In clinical trials performed by Dr. Werner Doyle (Neurosurgeon) and Dr. Eric Geller (Epileptologist), 55% of patients experienced a 50% or greater reduction in seizures two years post implantation. One patient obtained full control of seizures that impair consciousness and is now driving for the first time in his life, on less medication. It has been conservatively estimated that over 400,000 patients in the United States alone could benefit from this exciting new technology. Please read more and direct all inquiries to Alyson Silverberg, DNP, APN-BC, CNRN, Department of Neurosurgery and Comprehensive Epilepsy Center by calling 646-558-0804 or by email firstname.lastname@example.org.
PLEASE CLICK HERE to read about a successful surgery performed by NYULMC's Dr. Werner Doyle.
6) OVERVIEW OF THE 2013 AMERICAN EPILPESY SOCIETY MEETING
By: Sloka Iyengar, PhD
The 67th American Epilepsy Society (AES) Meeting was held at the Walter E Washington Convention Center from December 6-10, 2013, and was well- attended by staff and physicians of the NYU Comprehensive Epilepsy Clinic including Orrin Devinsky, MD, Daniel Friedman, MD, Helen Scharfman, PhD and Jacqueline French, MD.
United States. The 2013 meeting was attended by over 5,000 people, and provided a platform for epileptologists, neurosurgeons, basic epilepsy researchers, and clinicians to share cutting-edge information acquired in their respective subfields. AES is unique in its format, and attendees can choose between symposia and lectures with an audience in the thousands; or posters and workshops where the crowd is more intimate and conducive to discussion. In addition, there are networking and mentoring sessions for junior investigators as well.
ONE OF THE MAIN PURPOSES OF ANNUAL AES MEETING IS TO BRIDGE THE GAP BETWEEN BASIC AND CLINICAL EPILEPSY RESEARCH
BELOW ARE SOME HIGHLIGHTS OF THE 2013 MEETING:
NEUROCIRCUITRY OF LENNOX-GASTAUT SYNDROME (LGS) – Lennox-Gastaut syndrome is a type of catastrophic epilepsy that manifests in children less than 4 years of age. There is no cure for it, and complete recovery is very unusual. Children with this can also exhibit intellectual disability and developmental delay. At the AES meeting, researchers discussed the neurocircuitry involved in LGS, along with new advances in neuroimaging to localize the parts of the brain involved in seizure generation.
CATAMENIAL EPILEPSY – (seizure exacerbation in women with epilepsy that aligns with their menstrual cycle) is a well-recognized phenomenon in the clinic. Recent knowledge about how the brain changes during the menstrual cycle, and the possible reasons why there is a reduced seizure threshold on certain days of the cycle were discussed.
LIMITATIONS TO ACCESS TO APPROPRIATE CARE – epilepsy professionals talked about barriers to care for people with epilepsy. Factors such as shortage of professionals skilled in epilepsy, proper identification of comorbidites and cultural barriers, and the ways to overcome these barriers were discussed.
TUMORS IN PEOPLE WITH EPILEPSY – astrocytic tumors like glioblastoma multiforme (GBM) are routinely associated with seizures. At the meeting, evaluation and follow-up for such seizures, prognosis and the cognitive impact of tumor-associated seizures were discussed.
POST-TRAUMATIC EPILEPSY – Penetrating head injuries can lead to post-traumatic epilepsy and subjects can develop epilepsy months or years after the initial injury. At a special interest group at the AES meeting, the role of anti-seizure drugs as prophylactics, the value of EEG to recognize people who have a higher likelihood of developing epilepsy, and the process of epileptogenesis in people who have undergone post-traumatic injury were discussed.
FUTURE THERAPIES FOR EPILEPSY – researchers talked about anti-inflammatory therapy, focal cooling, optogenetics and devices for seizure prediction and control.
Dr. Jacqueline French, who was the President of the AES for 2013, gave a lecture titled Changing Landscape of Epilepsy Surgery. She also spoke about Q-PULSE (Quantitative Practical Use Driven Learning Survey in Epilepsy) – a questionnaire that was given to more than 200 epileptologists, to take the ‘pulse’ of the epilepsy ￼community. Using the Q-PULSE system, it was observed that the rate of temporal lobectomy (a surgical procedure for intractable epilepsies) had decreased over the decades. Possible ways to improve the situation and provide better care to people with intractable epilepsy are better patient education and outreach to poorer communities, educating neurologists about epilepsy surgery and facilitating better communication between epilepsy centers.
Helen Scharfman, PhD, who has an appointment at NYU Langone Medical Center and the Nathan Kline Institute, serves on the board of the AES. At the meeting, she moderated a session where epilepsy researchers talked about their involvement with clinical drug discovery. Scientists talked about the process as being long and arduous but ultimately fulfilling. Dr. Scharfman also talked about research in her lab on the role of postnatal neurogenesis (birth of new neurons in adulthood), and how aberrant postnatal neurogenesis can underlie cognitive and behavioral deficiencies in people with epilepsy.
Sloka S. Iyengar, PhD is an epilepsy researcher, and is interested in the basic mechanisms that can cause groups of neurons to generate and sustain seizures. After a Bachelor’s degree in pharmacy in Ahmedabad, India, Sloka attended University of South Carolina School of Medicine for her graduate work, where under the mentorship of Dr. David Mott, she used electrophysiology to study epileptic circuits in experimental rats. She is now at the Nathan Kline Institute, New York, where she is examining how postnatal neurogenesis in the hippocampus can affect seizures and epilepsy in the lab of Dr. Helen Scharfman. In addition to epilepsy research, she also has a strong interest in epilepsy advocacy and education.
7) WERNER DOYLE, MD GIVES A TED TALK
Watch neurosurgeon Dr. Werner Doyle discuss what he's learned by treating patients who have epilepsy that doesn't respond to treatment at TEDx Lower East Side. CLICK HERE to watch the video.
8) FUNDRAISING CORNER: FUDGERAISER
By: Juliet Berninger
This is the third year my son Nicholas Berninger (15) and my nephew, Joseph D'Amato (17) have spearheaded a "Fudgeraiser" for FACES. They do this in honor of my son Eric who suffers from epilepsy and is a patient of Dr. Orrin Devinsky. This year they had a lot of extra help from friends Kristian Thame (15) and Julia Levine (14).The kids marketed, made and packaged the fudge which was sold for $10 per piece. They offered the flavors of heath, chocolate, marshmallow, mint, almond and butterscotch. Each piece was beautifully wrapped in purple tissue and ribbon. A thank you note was attached with the tag line "Fudge makes FACES smile".
I am incredibly proud of the kids and all their hard work. They plan to continue making fudge for FACES! $2,700 worth of fudge was sold and along with a 2K matching donation sent from my husband’s employer, a grand total of $4,700 was donated to FACES.
9) FACES APARTMENTS 2013 STATISTICS
The FACES Apartments program is provided “cost-free” to families who travel from far away to receive epilepsy treatment at NYU Langone Medical Center. Year round, two standard rooms are available for occupancy at the Affinia Shelburne Hotel located on 37th Street and Lexington Avenue. This hotel is conveniently located within walking distance to NYULMC. Requests for accommodations are awarded on a first-come, first-serve basis. Priority is based on financial necessity and medical severity. Furthermore, only 1 room per family is granted. In case there is no availability, families will be referred to the NYU Hospitality Hotline at 212-263-2092, where families may be able to secure hotel accommodations at a discounted rate.
In 2013, FACES was able to serve:
- 69 families total
- Families came from 21 states and 4 different countries
- Length of stay ranged from 1 day to 6 weeks
- A total of 564 room nights were provided
If you would like to inquire about a FACES Apartment, please email email@example.com. Your message will be returned within 48 hours.
10) NEW AT FACES: THE FACES PET RELATIONSHIP PROJECT
At FACES we continue to work together to make a difference and improve the quality of life for all of those affected by epilepsy and seizures. As professionals dedicated to comprehensive holistic treatment protocols, we recognize that families with pets share a special relationship that also provides another healing treatment tool when struggling with catastrophic illness.
Based on discussions with Amie’s Place Foundation, who funds organizations that create programs dedicated to keeping families and pets together, we designed a questionnaire to determine whether pet relationships are important to our families who are presently being treated for epilepsy or seizure disorder. 78% said that when they receive treatment, having their pet close by brings them great comfort. 50% of those questioned said that they live in the tri-state area and it would be helpful for them to have some pet- care assistance when caring for an ill family member.
FACES shared these valuable findings with Amie’s Place and is pleased to announce that the Foundation has awarded FACES with a $103,814 one-year grant to support the FACES Pet Relationship Project (PRP). A growing body of scientific research suggests that pets can have a positive healing impact on our health and quality of life. This study will examine a trial of children and/or adults with treatment resistant epilepsy and see how they respond to treatment while developing a pet relationship. A trial of 20 children and/or adults with treatment resistant epilepsy will decide on a pet of their choice.
The patient/family will complete an application explaining why they want a pet and why they want to participate in this program. For the first 2 months, they will be randomized to receive a pet or not to receive a pet. (FACES will work with the ASPCA and the Humane Society to assist patients with pet adoption). Investigators will measure quality of life and mood ratings of all patients. After 2 months have passed, all patients receive the pet of their choice and will continue to be monitored for an additional 2 months. Medications will remain stable. The primary purpose would be to determine if those with treatment resistant epilepsy experience additional health benefits from their pet relationships. We will collect data on all individuals every 2 months and perform a systematic interview to assess the impact of the pet on their lives.
FACES is looking to determine if those with epilepsy or seizure disorder experience additional healthy benefits from their relationship with a pet. Consistent with our goal to improve the quality of life for people with epilepsy, FACES seeks to identify and provide another healing treatment tool by promoting the animal-human bond.
This “first-of-its-kind”, FACES Pet Relationship Project (PRP) is in honor and recognition of John Gianutsos. Dr. Orrin Devinsky, Director, NYU Langone Comprehensive Epilepsy Center states," John was a spectacular researcher, colleague, and inspirational friend. His pioneering work continues to improve the lives of many patients with neurological disorders." The relationship he shared with Dr. Devinsky reflects how deeply meaningful relationships, such as the human-animal bond, impact each other.
Additionally, Amie’s Place Foundation has allocated to FACES twenty-five (25) free six-year sponsored memberships, totaling $6,250 from its grant to MedicAlert Foundation International, “Keeping Families Connected Free Memberships Program for qualified pet owners”. This will provide FACES epilepsy and seizure disorder patients - who are also pet owners - with 24/7 emergency services and medical ID’s which will ensure that their pets are taken care of should they face a crisis.
11) THE FACES PET RELATIONSHIP PROJECT -- KEEPING FAMILIES CONNECTED
To access a copy of The MedicAlert Foundation, “Keeping Families Connected Free Memberships Program” brochure and enrollment form for FACES epilepsy and seizure disorder Medicaid patients - who are also pet owners - PLEASE CLICK HERE. All applicants should submit their completed brochure as indicated directly to MedicAlert Foundation to ensure privacy.
Please contact Pamela Mohr, Executive Director of FACES at firstname.lastname@example.org with any questions or for further information.
12) RESEARCH UPDATE: NYU ECoG GROUP
By: Rachel Jurd, PhD
Figure 1. Neural recordings from patients performing sensory-motor tasks involving speech production show that sensory-motor transformations occur bilaterally. Electrodes with significant activity in response to three types of task are shown: (i) sensory-motor (red), (ii) production (blue), and (iii) auditory (green). Auditory and sensory-motor activations (red with green) were often present on the same electrode. Sensory-motor activity was observed bilaterally (ie. in both the left and right hemispheres of the brain). Reproduced from Cogan et al, Nature, 2014.
The NYU ECoG Group website was recently launched to highlight the research efforts of this consortium. The Group is based within the NYU Comprehensive Epilepsy Center (Director: Dr. Orrin Devinsky) and led by Thomas Thesen, Ph.D. It is comprised of numerous researchers and clinicians from NYU (and collaborators from the University of California, San Diego, Harvard University, Princeton University and Columbia University) who are using intracranialrecordings to provide fundamental insights into human brain function.
Electrocorticography (ECoG), or intracranial EEG (iEEG), is the practice of using intracranial electrodes to record electrical activity from the brain. These electrodes are placed directly on the surface of the brain or within deeper brain regions during clinical procedures. For instance, as part of their evaluation for epilepsy surgery, some epilepsy patients undergo monitoring with intracranial electrodes to localize the region(s) of the brain where seizures originate. In addition to improving the ability to surgically treat epilepsy, ECoG recordings provide unique opportunities to examine the underlying mechanisms and brain networks involved in many important cognitive functions.
“Recordings directly from the human brain are a rare opportunity,” says Dr. Thomas Thesen, Director of the NYU ECoG Group and Assistant Professor of Neurology & Radiology at NYU School of Medicine. “As such, they offer unparalleled spatial and temporal resolution over other imaging technologies to help us achieve a better understanding of complex and uniquely human brain functions, such as language”.
Since the inception of the NYU ECoG Group in 2007, more than 10 research papers – involving data collected from a large number of epilepsy patients – have been published. These studies have led to several important insights about the workings of the human brain. The latest paper from the group was published this month in Nature. This study analyzed brain activity as patients engaged in speech tasks. The findings showed that speech processing requires both sides of the brain.
“Our findings upend what has been universally accepted in the scientific community – that we use only one side of our brains for speech” says Dr. Bijan Pesaran, an Associate Professor in the Center for Neural Science at NYU and the study’s senior author. “Now that we have greater insights into the connection between the brain and speech, we can begin to develop new ways to aid those trying to regain the ability to speak after a stroke or injuries resulting in brain damage”.
Research studies involving ECoG recordings at NYU would not be possible without the support of funding agencies (National Institutes of Health and Department of Defense) and foundations (FACES), as well as the generous participation of patients.
To learn more, please visit the following links:
Paper: Gregory Cogan, Thomas Thesen, Chad Carlson, Werner Doyle, Orrin Devinsky, Bijan Pesaran, Sensory-motor transformations for speech occur bilaterally, Nature, 2014.
13) LETTERS OF HOPE
Do you have a letter of hope you’d like to share in our future newsletters? If so, please contact Ms. Robin Dunn Fixell at email@example.com for more information.
1) A Letter from Brooke Stein
Dear Dr. Devinsky, Dr. Weiner and Erin,
The proud mama in me has to share some great news about Liam with you because each of you was vital in making last night happen.
Liam, a freshman, wrestled in his first varsity match last night. Constant seizures in middle school prevented him from wrestling in a match outside of practice. His high school coach told us that Liam earned his varsity spot this week through incredibly hard work.
Although he lost his match by one point, it was a huge victory for my son. When he finished his match, his coaches, teammates and all of the parents were in tears because, after having been on this journey with us, they knew what last night meant to Liam. Thank you for being the very best at what you do. Because of you, Liam is doing amazingly well.
2) A Letter from Paul Casey
Eager to share the story of his decades-long struggle with epilepsy, Paul J. Casey, a husband and father of two who works as in non-profit leadership, recently sent us an inspiring story that offers hope to others. On December 14, 2013, he celebrated the two year anniversary of the brain surgery that changed his life. In the interest of space, we have summarized much of his letter and included many of his own statements.
Seize the Day!
Paul: The seizures that I had throughout my childhood were physically, academically and mentally challenging...the medicine that I needed to take created additional quality of life issues. As a child with epilepsy, I thought, "Why me?"
Before doctors realized that side effects from his medications were to blame, Paul found he was unable to control his emotions--especially his anger--and fighting and an inability to focus on schoolwork made life difficult in fifth and sixth grades. Despite the challenges he faced as a child with epilepsy, with the help of his family, life did improve throughout middle school and high school. As a young adult taking a cocktail of medications, Paul attended college, got his driver's license and began experiencing seizures only during his sleep. But nighttime seizures also brought panic attacks; in Colorado, as an AmeriCorps volunteer, the fear of being on his own was heightened when neighbors and EMS had to break down his door to come to his aid.
Paul: Returning to New York gave me the security of living with family and alleviated some of the fear of being alone....Because of the stress of unemployment, I was having more seizures; and I didn't have health insurance or money for my medications.
Thanks to enrolling in a study at Cornell Medical Center, Paul received treatment at no cost, and eventually was able to return to work, marry, become a homeowner and start a family. In his 20's and 30's, Paul dealt with such issues as lack of sleep, weight gain and fatigue--all caused by the huge doses of medication he needed to function. It wasn't until the birth of his second child, Evan, and a diagnosis of his son's kidney disease, that Paul decided to become more proactive in his own health care; he wanted to be around for Evan and to be a candidate for a kidney transplant should his son need one someday.
Paul: Evan's health condition helped me realize that...seizure activity increased dramatically when under stress....In 2010, I began to see a new epileptologist at University of Medicine and Dentistry of New Jersey....The doctor explained the damage these seizures could have on the rest of my body--including my heart; if I was having seizures, being a kidney donor would be very unlikely. I realized that having seizures and dealing with medication was not just about Paul; it was about my family and all those I was important to.
At the age of 38, Paul learned from the results of an MRI that the dysplasia located in this right temporal lobe could be removed with minimal risk or side effects.
Paul: This was amazing news. As I drove away from the hospital that day, I remember thinking that this could be the biggest decision I ever make....I was determined to do whatever I could to make sure I could be there for my family.
After researching the possibilities, it was decided that Paul would put himself in the hands of Dr. Eric Geller and his team at Saint Barnabas Hospital in Livingston, New Jersey. He then met NYU's Dr. Werner Doyle through NYU's partnership with Saint Barnabas.
Paul: Dr. Doyle met with my wife Ann, my mother and I to go over the process and the different phases of surgery....The kindness that he showed could have been as important as the skill he utilized in surgery!...I left that day feeling in awe that I could be so fortunate to have a doctor who was not just the best at what he does, but was also an amazing person!
Paul was scheduled for the first phase of a two-part surgery on December 7, 2011; his second surgery would take place on December 14, 2011. The risks? His seizures would not be eradicated (although they would not likely get worse), and that his hearing might be affected. Possible rewards? Experiencing better sleep; feeling more energetic; being seizure-free; and forgoing medication. In addition, he would be able to give Evan a kidney, should he ever need it. The surgery on December 14th went smoothly and was considered a great success! Afterward, Paul experienced significant pain, which was managed with medication, and he also experienced a bout of depression that, with the help of a supportive family and anti-depressants, finally lifted three weeks later. On January 10, 2012, Paul ventured out of the house for the first time. He was back to work full time in the beginning of February.
Paul: Now, two years later, I look back at this experience and I am so pleased to see that the reward of this surgery was so much greater than I could have realized. Physically, there were no side effects....My energy level is much higher; I am sleeping much better and am completely seizure free!....My outlook on risk, seizing the opportunity and my ability to deal with stress and adversity has made me a better father, husband and human services professional....I now play the role of the person that others can rely on as they look to overcome challenges.
Looking back on how epilepsy shaped his life, Paul no longer asks, "Why me?"
Paul: I have been blessed with a wonderful and supportive wife, amazing kids, great family and fantastic friends. This fortune, my renewed energy and good health, along with what I have learned through my life experiences afford me the daily opportunity to help others learn from their experiences and improve life for everyone. Seize the day, take the exciting opportunity and help make it a better life for everyone.
3) A letter from Michelle Sanders on her Daughter: Olivia’s Ketogenic Diet Success
Olivia, are you okay? Olivia, do you remember where you were going? Olivia, can you wake up?
The signs were there for months--unusual incidents of blank stares, disorientation and morning exhaustion. Later, we learned that the children at school were familiar with Olivia's facial drooping and excessive drooling. Olivia dismissively reported seizures that had occurred daily, but at the time she didn’t have a name for them and they disappeared quickly.So that morning, when Olivia slumped on the reading rug and began twitching head to toe while drooling, no one seemed afraid. Her friend simply called out, “Olivia is doing that thing again, but this time she is not getting up.”
Maybe that's why our eight-year-old Olivia so casually described her symptoms in the emergency room that Tuesday in April, to the caring and calm Dr. Rina Goldberg–who then proceeded to explain Benign Rolandic Epilepsy and EEG's, and why an MRI was needed to rule out other possibilities. Within hours, Olivia was hooked up and showing centrotemporal spikes that looked like crayons gone wild. In the blink of an eye, we leapt into the whole new world of epilepsy, Olivia handling everything in stride with her usual charm and joy. Since this diagnosis is commonly outgrown and easily controlled with medication, Olivia would surely return to school in a few days and this would be behind us.
Unfortunately, as the months passed, our second-grade shock grew into third-grade frustration, while we watched our vivacious Olivia fade behind a fog of blank stares. She also experienced distorted facial appearances, learning struggles, difficulty controlling hunger and emotional meltdowns. With the help of our doctors--and iterations of medications--as well as websites and strong school support, we desperately tried to pull our Olivia back to us. Failing the fourth grade was not an option. Medications were working to calm many of Olivia’s more aggressive seizures, but they carried unacceptable side effects. After much research, we found compelling information on dietary regimens that could be helpful to the brain. We looked at the Perfect Health Diet, the Paleo Diet and the Atkins Diet. Under the cautious guidance of Dr. Orrin Devinsky, we chose a therapeutic diet--the ketogenic diet-- specific to childhood epilepsy, but not typically used for Olivia’s type of diagnosis.
At NYU, we started the diet, and we experienced not just one, but all of the possible difficulties of ketosis. We knew the struggles ahead, but we were determined for this to work. Olivia wanted to feel better and was on board!
After the hospital stay, we entered the detailed phase of weighing and measuring, and living a grain-and sugar-free lifestyle, which required a great deal of daily planning and preparation. We used the Charlie Foundation guide, the Keto Cookbook and customized recipes recommended by Dr. Devinsky’s dietician, Courtney Glick. To manage Olivia’s fat and protein ratios, we filled containers with 150-calorie snacks and 500-calorie meals. We tested her blood glucose and ketones morning and afternoon--relying on a magic combination of fats from MCT oil and organic heavy cream. For more palatable menu choices, we removed the fat from the recipes and found it easier to have Olivia swig the MCT oil and heavy cream like a dose of medicine. As a family, we now avoid foods that contain chemicals, natural flavorings, citric acid and spices that have dextrose. Over time, when you make up your mind to do anything, you find the necessary patience and resources. We all feel better and we have learned to love new foods like lettuce wraps, olives, almond butter and coconut flour.
Nothing has been easy, but all of it has been worth the results. Olivia is back! Miraculously, in addition to feeling emotionally stable, she has seen her stamina and desired weight return, and she has regained her math and reading skills. If you didn't know Olivia's history, you would never suspect a problem. From one month to the next, we have titrated down her medication while increasing her favorite activities; in fact, in February, Olivia will sing a duet with a dear friend in her upcoming fifth-grade school musical.
We owe a debt of gratitude to our amazing Olivia, who is an incredibly spirited young girl. Without her courage and commitment, success would never have been a reality. Our wonderful family and friends have supported and encouraged our efforts; and through this all, we found our way because of the determination of our doctors, nurses and many dedicated Deerfield Elementary School teachers and administrators. Epilepsy may not be gone, but we are back on track in finding a more manageable way to live seizure-free.
14) FACES NOTEWORTHY PRESS
Top 10 National Press Articles
- Epilepsy Patients Help Decode The Brain’s Hidden Signals
- Dr. French and Dr. Devinsky named Top U.S. Specialists in Epilepsy
- Our Research with Intracranial Implant Patients has Made the National News
- Families with Sick Children Flock to Colorado to Try Cannabis Treatments
- 'Miracle' Diet Stops Woodthorpe Boy's Epileptic Fits
- Dr. Kothare (Pediatric Sleep Program) Talks About Sleep & Engineer at the Controls of the Train that Derailed in NY (2nd half of video)
- Parents of Children with Epilepsy Lobby Lawmakers Over Medical Marijuana
- New York's Medical Marijuana Law Excludes Some Who Seek the Drug
- Studies Highlight Benefits and Risks of Ketogenic Diet for Refractory Epilepsy
- Florida Bill Would Allow Marijuana Extract For Child Seizures
FACES NEEDS YOUR HELP
With the help of our fantastic FACES community, the 2013 FACES Gala Auction was the most successful to date with over 350 packages! The evening raised an incredible $4.7 million to support our mission and programs. FACES is now accepting donations for the 2014 Gala, being held at Pier Sixty at Chelsea Piers on Monday, March 3, 2014. Help us make this year’s auction bigger and better! Our auction is one of the largest in New York, and includes items such as designer bags, sporting events, high-end electronics, vacation packages, fine jewelry and much more.
PLEASE CLICK HERE if you are interested in donating items to the 2014 Gala Auction
We are excited to launch the Dr. Blanca Vazquez Summer Camp Scholarship Program.
The deadline to apply is May 2, 2014
A portion of this scholarship program has been funded by
STAY TUNED FOR FUTURE PEACE OF MIND UPDATES
The FACES PET RELATIONSHIP PROJECT is made possible by a generous grant from Amie's Place Foundation.