May 2016

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MAY 2016 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. MEET MADELINE
  3. FEBRILE SEIZURES
  4. SOMETHING TO SING ABOUT
  5. DEAR ROSIE
  6. NOTEWORTHY NEWS

1) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

BUFFALO CHICKEN DIP

Each serving provides: 318 calories, ratio: 3:1.8, 15 grams protein, 30.83 gm Fat, 2.05 gm carbohydrate

Ingredients:

  • 25g mayonnaise, Hellmann's
  • 25g cream cheese, Philadelphia
  • 15g chicken breast, cooked
  • 5g blue cheese crumbles
  • 5g Frank's Buffalo Wings Hot Sauce
  • 75g celery
  • salt/pepper

 

 

Directions:

Allow the cream cheese to come to room temperature. Mix the cream cheese and mayonnaise together until the mixture is smooth. Shred the cooked chicken and add it to the cream cheese mixture. Season the mixture with salt and pepper. Sprinkle the blue cheese crumbles on top. Top the dip with the hot sauce if you are using it. Heat the dip for 30 seconds in the microwave or let it sit under the broiler until the top begins to brown. The dip does not need to be served hot. Serve the dip with celery that has been cut into strips or small bite size pieces.

This recipe has been provided from The Charlie Foundation

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

2) MEET MADELINE

By: Kristin Mon

Our epilepsy story beings in January 2014, when I received a panicked call from school telling me that they suspected that Madeline had a seizure while eating breakfast at home, and soon after received the dreaded epilepsy diagnosis. Madeline has never let that diagnosis stop her in the years since.

Madeline’s epilepsy was very hard to control in the beginning. She was having many different types of seizures. When her absence seizures started clustering and were uncontrollable, we ended up at NYU Langone Medical Center for a six-night video EEG. Her medicine dosages had been increased significantly since the initial diagnosis, but nothing was stopping the seizures. New medicines were introduced to little effect. Worse still, the side effects of the drugs were significant. She was alternatively moody, lethargic, trembling, unable to walk, and her speech was unintelligible. The usually bubbly Madeline we knew was slipping away right before our eyes and we felt completely helpless. And she was still having 20 to 40 seizures each day.

That is when Dr. Judith Bluvstein and Dr. Orrin Devinsky suggested we try the modified Atkins diet. We started it immediately while we were still in the hospital, and began to wean her off most of the medicine she was taking. Almost immediately we saw a drastic change for the better. We started to see the sparkle in her eye come back and the seizures were stopping. The new diet was an enormous challenge, but the benefits far exceeded the hurdles.

Madeline is now 8 years old and is thriving in Second Grade. She recently hit the two-year seizure free mark, and we continue to follow the diet religiously. Madeline loves to tell people about her diet and how to controls her seizures. She knows that, without this amazing diet, she wouldn’t be able to be the fun, independent, brilliant, confident, brave, and amazing little girl that she is. Madeline’s first love is reading and she would sit all day and read books every day if she could. That is, when she’s not performing. She loves to put on a show. Singing, acting, and dancing – you name it and shell perform in front of a crowd with no problem. Recently, thanks to NYULMC, we had the opportunity to tour backstage at Aladdin on Broadway and meet Princess Jasmine herself. Madeline and her two younger sisters were beyond excited. It was an experience that they will never forget.

ENJOY SOME PHOTOS

 

2) FEBRILE SEIZURES

  • Febrile seizures are defined as those that occur during a fever, but not because of an infection of the central nervous system.
  • These seizures are the most common type of convulsions in infants and young adults.
  • Febrile seizures that are short do not appear to be associated with adverse effects later on in life. However, longer febrile seizures (known as febrile status epilepticus) are seizures that last longer than 30 minutes and can be associated with epilepsy later on in life.
  • Two important questions in this field are: 1. how and why does fever cause seizures? 2. Do febrile seizures cause epilepsy?

How does fever cause seizures?
Genetics – Febrile seizures sometimes tend to run in families. It could be that genetic mutations in certain neurotransmitter receptors and ion channels make one susceptible to febrile seizures.
Increased brain temperature – Neuronal function is optimally set for a certain temperature. An increase in brain temperature, as in a seizure, can lead to increased neuronal firing and possibly seizures.
Chemicals released during a fever – In addition to increased temperature, a fever also causes release of chemicals called cytokines that may cause seizures.

Do febrile seizures cause epilepsy?

  • As mentioned, it is thought that short febrile seizures do not cause any harm later in life.
  • Whether longer febrile seizures cause epilepsy later in life is not very easy to investigate, because children are exposed to varying genetic and environmental conditions that makes testing difficult.
  • Scientists have done experiments in rats and mice, and have found that febrile seizures led to the development of spontaneous, recurrent seizures (i.e. epilepsy) in 35% of rodents.
  • In contrast to a seemingly small proportion of rodents that showed behavioral seizures, a bigger proportion showed spikes when their EEG was recorded.
  • Hence, the relationship between long febrile seizures and epilepsy has been shown in experimental rodents; however, the underlying mechanisms still need to be figured out.

 

Sloka S. IyengarAs a basic epilepsy researcher, Sloka S. Iyengar, PhD used animal models of epilepsy to understand what makes the epileptic brain susceptible to seizures and comorbidities. Currently, as a clinical epilepsy researcher at the Northeast Regional Epilepsy Group, she conducts clinical trials for people with epilepsy. She is also a science writer and advocate.

 

 

 

3) SOMETHING TO SING ABOUT

By: Frank Harrison, MBA

On April 10th, I had the pleasure of attending the FACES 2016 Epilepsy Conference at the NYU Langone Medical Center. Even more thrilling, I had the opportunity to chat with some of the speakers. There was so much brilliance in one venue. It was truly awesome to be surrounded by professionals whose work is dedicated to helping better understand and treat this complex disorder.

The morning keynote address was by Dr. Orrin Devinsky, who talked about Precision Genetics and CBD (Cannabis Oil) and its role in providing support to epileptic patients through what is commonly known as “medical marijuana.” It has proven successful in most patients but for those whose epilepsy is more complex it appears to not have a significant impact. I am not a good candidate for this new treatment because my epilepsy is already controlled with medication.

The first Session featured Dr. Dugan, who covered more traditional treatments such as hormones and seizure medications. The upshot is that despite the influx of new drugs into the market, there doesn’t appear to be anything groundbreaking. The only positive is that epileptic patients now have more choices. What I found interesting, and I might be biased since this is the drug I currently take, is that Lamotrigine (Brand Name: Lamictal) continues to have the most positive outcome for major depressive disorder resulting from epilepsy. Patients have even seen minimized bone deterioration and less of an impact on fertility. So while CBD is innovative and has a recent history of providing alternative solutions to improve quality of life, it’s reassuring to know that traditional medications like Lamictal can be effective.

The second Session that I attended was with Dr. Scott Hirsch, who I personally see and think is an outstanding professional in the field of epilepsy and psychiatry. He addressed depression, co-morbidities and epilepsy. He provided a clear understanding that while epilepsy is life long, not only can it be managed, but epileptics can thrive. This is something I continue to advocate. People with epilepsy should know that there is hope and life gets better. Dr. Hirsch also shared how he uses talk therapy, which works in most cases. But if you are diagnosed with major depressive disorder, you must supplement your existing epilepsy medication with an anti-depressant because this co-morbidity becomes a disorder of its own.

The final Session I attended was delivered by Ariel Weisberger, who illustrated how music therapy is creating inroads as an alternative therapy for people with autism and epilepsy. He impressed everyone in the audience, including me, by showing proof that music therapy has a significant impact as a neurological treatment with positive emotional outcomes. I feel that it is important that whatever treatment an epileptic patient chooses, whether it is CBD or medication, alternative treatments such as music therapy and even meditation/acupuncture be considered for use as a supplement.

This wonderful and enlightening conference was reassuring and encouraging. It also confirmed my belief that while Epilepsy is a life-altering and lifelong disorder, it can be managed with the right treatment protocol. And being told you have epilepsy does NOT mean you can no longer enjoy what “normal” people do. With the help of the doctors and researchers at the FACES conference, and other brilliant, dedicated people around the world, we are more likely to enjoy a successful and satisfying life.

After this conference, I am more certain than ever that my quality of life is in fact better than it was when I was first diagnosed many years ago. With my customized plan that combines Lamictal, acupuncture and (soon) music therapy, I am on the right track. In fact, my treatment protocol is something to sing about.

One final reminder: the wonderful documentary “SEIZED” will be broadcasted in the month of May on PBS. It follows four people who are receiving different treatments, from CBD to surgery and beyond. Please ‘seize’ the opportunity to learn more about this “lifestyle.” It’s an unparalleled learning experience for anyone who has epilepsy and/or wants to learn about it.

Frank R. Harrison Frank R. Harrison is a seasoned executive who has worked for corporations spanning the Financial Services, Entertainment and New Media industries. He’s a graduate of the NYU Stern School of Business, earned his MBA from Fordham University’s Graduate School of Business and returned to NYU to earn his Master of Arts degree in Psychology and his MS in Integrated Marketing. Connect with him on Twitter @frankhealthcare or at frh2001@stern.nyu.edu

 

 

 

5) DEAR ROSIE

QUESTION: I’ve been recently dating someone and it’s getting serious. How do I let them know about my epilepsy? I’ve already declined a concert invitation and happy hour.

As I have written about earlier, when it comes to opening up about your epilepsy, there is a noticeable difference between informing your coworkers in a professional manner, giving your roommates a heads up or unloading on your friends and family. But now we get to the hurdle of telling a person that you are romantically interested in and the additional level of courage and self confidence that takes.

When starting out a new relationship, people tend to naturally attempt to present the “best version" of themselves in the courting process; spending more time getting ready, overthinking the spots to hang out in, going out of the way to show off a sense of humor or awareness of current affairs and being selective of personal information to be shared.

If you’ve made it this far without the ‘seizure conversation’ arising, I’m assuming you have successfully been able to hide to the occasional need to be taking meds and the potential noticeable side effects. And being that you’re of drinking age and most dating spots are accompanied by a bar, you have succeeded in turning down drinks without the insistence for an in-depth explanation. Impressive

However, if you want to continue dating, then you need to let them know. Even though, for those of us who are seasoned and well aware of what to expect with our epilepsy, it not a big deal... we cannot forget that it is also kind of quite ‘a big deal’, because we all know seizures can still happen, regardless of the extended break in time. Almost every epileptic person would agree, giving someone a heads up about what may happen is much preferable than explaining to them afterwards when then still have a look of confusion lingering on their face from seeing their first seizure.

Therefore, set up a time and space during your next date and tell your story. You will feel extended relief once sharing and lighter with the weight of worry off your back. In all likelihood, they will be supportive and appreciative and worth continuing to invest time into. However, if they’re not, then you need to move on. Considering you’re still overthinking this, means you’re young or new to epilepsy. Either way, you will learn that the unique circumstance of our brains is not going away and it is much better to have people in your life that are aware of that and love you regardless.

And if this doesn’t make things any easier, I did just learn, under unfortunate timing and sad circumstances, that the one and only Prince himself dealt with epilepsy his whole life. So while we can regularly feel some stress about opening up, now you can just listen to any of his countless songs and be reminded that so many others carry the unique baggage that comes with having epilepsy...some of us just rock-it with purple sparkles….

‘Dear Rosie’ is a monthly contributor to our newsletter. She is interested in hearing from the community and would be happy to answer any non-medical related questions that you may have. Email facesinfo@nyumc.org with your questions or suggestions.

6) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. Everolimus May Have Activity in Seizure Disorder
  2. News from the AAN Annual Meeting: Epilepsy Does Not Impact Fertility, New Study Finds
  3. Women with Epilepsy Just as Likely to Get Pregnant as Healthy Women of Childbearing Age
  4. Han Solo’s “Force Awakens” Jacket Fetches Nearly $200,000 in Charity Auction
  5. Harrison Ford’s "Force Awakens" Leather Jacket Fetches $191,000 at Auction
  6. Give Your GPS a Rest and Let Your Mind Benefit from Navigating Your World
  7. Find Time for Play to Keep Your Brain Healthy and Improve Your Memory
  8. Love Makes Its Presence Known in Both the Head and the Heart
  9. Six Weird Ways Waking Up Early Can Improve Your Health, So Stop Hitting Snooze
  10. 'No-Buzz' Medical Pot Laws Prove Problematic for Patients, Lawmakers

FACES Project Coordinator, Rebecca Kornstein, accepts a check for $500 from insurance firm Arthur J. Gallagher. The firm chose FACES as one of their charities of choice, collecting money from their employees for “dress down Fridays”. Client Service Associate Katherine Kadletz, presented the check to Rebecca during a monthly meeting.

 

 

 

SEIZED: Inside the Mystery of Epilepsy follows the personal struggles of four individuals and their families as they face the huge challenges of living with epilepsy and courageously search for new treatments. The one-hour documentary also features leaders in epilepsy research, including: Dr. Orrin Devinsky, Director of the NYU Langone Epilepsy Center; Dr. Robert Finkelstein, Program Director of the National Institute of Neurological Disorders and Stroke; and Dr. Karen Parko, neurologist, San Francisco VA Medical Center.  Enlightening and emotional, SEIZED: Inside the Mystery of Epilepsybrings epilepsy out of secrecy and into a new era of hope and understanding.

SEIZED: Inside the Mystery of Epilepsyis a production of Partisan Pictures, produced by Peter Schnall and Elizabeth Arledge, and is being presented on PBS by Twin Cities PBS/Minneapolis-St. Paul.

Please click here for more information:http://national.tpt.org/resources/seized-inside-the-mystery-of-epilepsy/

Funding for SEIZED: Inside the Mystery of Epilepsyis provided by The Pollner Family and The Thorpe Family.

 

Summer camp can be a wonderful experience for children with epilepsy. Our Summer Camp Scholarship Program serves children with epilepsy in financial need and allows them to experience fun, confidence-building activities.

PLEASE CLICK HERE TO VIEW APPLICATION

THE DEADLINE TO APPLY IS JUNE 3, 2016

If you have any questions or would like more information about the program, please email FACESscholarship@nyumc.org. Your message will be returned within 48 hours.