FACES Annual Newsletter – A Letter From Our Founder, Orrin Devinsky, MD
The first half of 2012 has been a remarkable time for the epilepsy movement and for FACES.
The Institute of Medicine (IOM) released its much-anticipated report - Epilepsy Across the Spectrum: Promoting Health and Understanding. FACES helped sponsor the report that identified important areas. These include prevention; access to care; educating people with epilepsy, their families, and health care professionals; community resources; and increasing public awareness. The report has stimulated the epilepsy community into action and will hopefully lead to more funding for epilepsy care, education, and research. Many of the IOM recommendations are mission central to FACES.
Our annual educational symposia on epilepsy for patients and families, is one of the largest in the country available on www.nyufaces.org. Our community resources like Game Day increase support, awareness and connections. Our team educates health care workers through academic publications and lectures throughout the world.
Pill Swallowing Techniques, from a Mother
My daughter, Nora, struggled with learning how to swallow pills. I tried everything – pill swallow aids/gels, pill swallow cups, hiding it in yogurt, applesauce – everything. Medication time became a frustrating experience for all of us. I researched pill swallowing training – which can be done by a psychologist – although this was an expensive option. I found this web video, which teaches kids some simple techniques to swallow pills. Since it was free, I figured I would give it a try before spending a lot of money. We watched the instructional video, printed out the homework and followed the simple instructions.
Nora slowly graduated from Nerds to M&M Mini’s to Tic Tacs. Within 10 days, she mastered it. She now likes to swallow two big capsules at a time – just to show off! Teaching her to swallow pills has dramatically improved our quality of life with epilepsy.
Quantitative EEG Analysis of Spike and Wave Activity to Determine Efficacy of Antiepileptic Drugs for Primary Generalized Epilepsy
By Steven Pacia, MD and Zianka Fallil, MD
Each year, FACES offers a select number of research grants to scientists who submit their prospective research studies in a highly competitive pool. In 2012, FACES is proud to have sponsored some excellent studies, and we would like to showcase one study a month in this e-newsletter. Last month, insight featured Dr. Tracy Butler’s research of “Imaging whole-brain functional connectivity in epilepsy with attention to effects of antiepileptic drugs.” This month, we feature the collaboration of Drs. Steven Pacia and Zianka Fallil.
Epilepsy is a complex disorder that is difficult for both patients and doctors to deal with. Epilepsy affects families as much as it does patients. Witnessing a family member’s seizure is a dreadful and frightening experience. Seizure control is the only way to ensure a good quality of life for patients and families.
A very exciting trend in medical research is to tailor and individualize treatment for each patient. Our research aims to improve a physician’s ability to select effective medical treatments by careful analysis of each patient’s brain waves.
Abnormal brain waves are the result of epilepsy. In a subtype of seizures known as primary generalized epilepsy (PGE), the diagnosis is confirmed when brain waves measured by performing an electroencephalogram (EEG) show abnormal bursts of electrical activity that appear as a pattern visualized as generalized spike and waves. The spike component is the result of brain hyper-excitability while the after-going slow wave is a marker of the brain’s inhibitory mechanisms.
Our preliminary results reveal subtle but significant differences in the slow wave phase duration between patients naïve to anti-epileptic medications (AEDs), patients refractory to AEDs, and those who are well-controlled on AEDs. This allows a more individualized approach to treating epilepsy. We are then able to distinguish patients who have not been treated with medications for epilepsy, who are not responding to their current medications, or those for whom the current regimen is working well as planned. Our research is an innovative approach to provide a tool that allows the selection of epilepsy medication tailored more specifically for each patient.
A portion of the study’s findings were presented at the 2012 American Academy of Neurology meeting.
Quality of life is critical to successful epilepsy treatment. Medication side effects or ineffective medications can prevent patients from living full lives. Our research attempts to improve the predictive value of the EEG and hopefully reduce the risk of breakthrough seizures. In other words, physicians will be provided with a tool that can improve their ability to choose the optimal epilepsy medication for their patients. We also hope to predict which patients are at highest risk for seizures based on detailed analysis of the slow wave components in their EEGs. More accurate prediction of medication efficacy and seizure risk will allow patients more control over a disease that can sometimes feel random and frightening.
Kristin’s Summer Camp Story
I am the mother of a nine-year old girl named Kristin. Kristin suffers from petit mal…also known as absence seizures. She has been affected by this condition since she was four years old, which was when I first noticed her “drifting off.” Pretty soon, we started calling these moments “episodes.” Kristin has always been lively, friendly, and very intelligent. She loves people and people love her, but the one bee in her bonnet has always been that one question: “Kristin, are you ok?” This question usually follows an episode.
A few years ago, Kristin’s neurologist suggested I sign up with an organization called FACES. I did and shortly I began to regularly receive their emails. In one of these emails, I noticed that they were offering scholarships for summer camp. Sending my daughter to summer camp had always been a dream of mine, but I could never quite make it a reality. My family is full of hard workers, but not a lot of means. Sending Kristin to summer camp was not going to happen this year. Or so I thought.
Today, because of the FACES team, Kristin is now attending summer camp for the first time and she’s having the “best summer ever!” (her words exactly). Kristin is part of a group called “The Adventurers”. All Campers swim twice a day; they are given instructional swimming lessons in the mornings and they participate in a free swim during the afternoon. Campers participate in various activities each day which may include dance, arts and crafts, nature, gardening, boating, and mini golf, etc ... They also go on field trips to the Liberty Science Center, Victorian Gardens Amusement Park, Bear Mountain Trailside Zoo, and the Norwalk Aquarium. The FACES organization has made one of my dreams come true and unbeknownst to them, they have also made a young person realize that having a condition doesn’t always mean doctors, medicines, and annoying questions. It can also open doors to new friends and new experiences.
One day, while Kristin and I were walking on our way to the campsite, she turned to me and said, “Wow…I’m so lucky I have epilepsy.” You cannot imagine how proud I felt. For the first time in five years, my daughter saw her condition as something positive instead of a handicap. The FACES team gave my little girl more than just a scholarship and I will forever be in their debt.
Signed, Ledi Fermin (a grateful mom)
Game Day Fun!
By Steven Tarr
Growing up in the suburban town of Montville just forty minutes from New York, true adversity was something I neither knew nor could comprehend. The worst day I could have was a day in bed with a stomach virus, the hardest hill to overcome, an elementary school test. However, when I experienced my first seizure at age seven, and six more thereafter, accompanied by grueling migraines weekly and optical migraines daily, I finally knew what it was like to struggle with a condition that removed your free will. My grades dropped in school, work piled up, and I spent a full year of my life saying, “I can’t do it.” Even after I realized that I could not let these conditions restrict my life and began to work hard in school despite my pain, I still could not fully come to terms with my epilepsy and migraines. Any time that I was asked about why I had to miss class or had to bring up my problems, I would hide my inner self and try to pretend nothing was wrong. I set up boundaries that constantly made me believe and feel that I was a lone misfit in a world completely unlike me, and no one would ever understand me.
Then, all of my attitudes, opinions, and beliefs changed in September of 2007, when my two neurologists, Dr. Daniel Miles and Dr. Siddhartha Nadkarni, suggested that I attend the upcoming FACES Game Day. I eagerly accepted, not only due to my excitement for the festivities, but also because of my desire to see and meet with children and teens who were just like me. When the day came and I walked into Chelsea Piers with my family, I was greeted with a smile and a warm welcome. Instantly, I felt at home, and I had an undeniable sense of belonging while standing among these kindhearted and generous people. I, along with every other kid with epilepsy, parent, and sibling, was treated as if we were part of an extended family, but more importantly, like we were all normal people and had nothing wrong with our lives.
Free of any admissions cost, FACES Game Day brings to life a plethora of activities for families to take part in and enjoy, many of which are especially fun because they are not usually accessible to those with medical conditions such as epilepsy. Sports, carnival games, and even gymnastics are available at The Field House, along with delicious refreshments at every corner that do not even cost a penny. In the athletics department, Game Day sports batting cages, basketball courts, and a soccer field. U.S. Olympic hockey goalie and bronze medalist Chanda Gunn will be volunteering again this year to promote how hard work and determination can lead to success, despite living with epilepsy. Last year, Chanda coordinated and played in a full-length soccer game with the children who attended. As for games, FACES Game Day has a long lineup of traditional carnival style games and activities, including a pie toss, face painting, balloon animals, motorized car races, and even a magic show for children.
Alongside the sports and carnival games is an enormous gymnastic setup with instructors at various stations to assist the children in the activities. Such stations include balance beams, trampolines, large jumps into pits of foam cubes, and even rock climbing. Of course, refreshments of all kinds can be found throughout the main area. Foods such as hamburgers, hot dogs and even PB&J sandwiches are readily available, along with snacks and treats such as popcorn, cotton candy, and ice cream. Beverages such as water and sodas are also available nearby for your convenience.
FACES Game Day is a wonderful way to have fun with people who understand you and to learn that a medical condition does not mean life restriction. This year's Game Day is on Saturday, September 22nd, with even more fun planned than last year. I love how FACES has brought light into so many children's lives that are full of darkness and have volunteered on Game Day since last year. I hope to see you there this upcoming September!
We anticipate yet another exciting and fun-filled Game Day this year. Due to the ovewhelming response, the event is fully subscribed. We look forward to welcoming the many FACES kids and their families who registered.