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MAY 2017 FACES E-NEWSLETTER 1) WHY I VOLUNTEER AT NYU FACES 2) STATUS EPILEPTICUS- AN OVERVIEW 3) EPILEPSY CONFERENCE 4) HONORING DR. VAZQUEZ 5) IEP MEETING 6) DR. BLUVSTEIN’S HIGHLIGHT 7) AAN ADVOCATE STATEMENT

8) RECIPE OF THE MONTH 9) NOTEWORTHY NEWS

1) WHY I VOLUNTEER AT NYU FACES

By: Noel Simsiman My name is Noel Simsiman, and I have been volunteering at FACES since 2009. I normally volunteer

at the Gala, Epilepsy Conference, and Game Day. I have even run in the 2014 NYC Half Marathon to fundraise for FACES. Why am I passionate about volunteering at FACES all this time? Well, I’m here to share my story and reasoning behind this.

Before I even discovered FACES, I was dealing with my own share of problems as a long time epilepsy patient. In fact, I could still recall my first seizure mid-flight from Denver to Memphis twenty-one years ago as my parents witnessed the entire experience sitting next to me. Still a child at the time, I did not realize the extra obstacles I’d face growing up with epilepsy. My medication controlled the frequency of my seizures to a degree, but I would still have one during the day around every couple of months. Mentally, it took a toll on me because I constantly felt left behind due to the limitations imposed by epilepsy. For example, it hurt knowing that I couldn’t get a driver’s license when I initially reached the legal driving age. I also felt that I was not experiencing my adolescence at the same level as my peers, especially when as a teenager I had to miss out on going to parties and being part of the social scene. Then, the frequency of my seizures increased when I started college. With all the different medications I’ve taken through the years, I was definitely discouraged as a result of this. During my fifth year in college, my parents consulted with the doctors at the NYU Langone Comprehensive Epilepsy Center about other treatment options. It was determined that I would be a candidate for surgery. I took a leave of absence for the spring semester of 2008, and Dr. Doyle performed brain surgery on me in January 2008. I returned to college during the fall semester later that year to finish up my bachelor’s degree, and I started to experience the positive effects of the surgery. It’s not easy to describe all the positive effects that I started experiencing at that time. However, I could share undergoing an improvement in my thought process and an increase in my ability to feel/express a broader range of emotions. This surgery changed my life! I was always grateful for my parents’ support through the years, but I was also very grateful to the staff at NYU for all they have done for me. As a college student who was about to graduate in 2009, words and material gifts would not be enough for me to show my gratitude to the doctors and staff. I eventually came across a FACES ad or flyer in the doctor’s office, and I decided that I would use my talents and time to volunteer for FACES as my gift to show thanks to the NYU Comprehensive Epilepsy Center. In May 2009 I

volunteered for the first time assisting with a contact mailing project in the FACES office, and I have progressively taken on more roles through the years. Since my surgery in 2008, I have been seizure free except for one anomaly a few years ago. Looking back, I would have never imagined all that I’ve accomplished today while I was still a college student. From regularly driving my own car to running marathons or even starting my own tax practice, I will always show gratitude knowing the blessings I received. The FACES team constantly provides resources to all who are affected by epilepsy, and I am proud to donate my time and talents to this organization.

2) STATUS EPILEPTICUS- AN OVERVIEW By: Sloka Iyengar, PhD

Status epilepticus (SE) is a medical emergency, and is characterized by multiple seizures without

return to baseline. SE is often associated with unfavorable long-term consequences. In the past, SE was defined as more than 30 minutes of continuous seizure activity without full recovery of consciousness. However, more recently, evidence has shown that seizures lasting longer than 5 minutes are unlikely to stop on their own; in addition, the longer seizures last, the more difficult it is to stop them with anti-epileptic drugs (AEDs). Hence, the revised definition of SE includes seizures lasting 5 minutes. Longer seizures can also cause neuronal damage, which is why stopping seizures is the first priority in SE treatment. SE can be convulsive or non-convulsive, the latter accounting for approximately a quarter of SE cases. As the names suggest, this classification of depends on the presence of motor symptoms, and the degree to which consciousness is compromised.

SE is first treated with benzodiazepines like lorazepam; however, a subset of people with SE fail to

respond to benzodiazepines; in these cases, SE may progress to refractory SE (RSE). RSE is treated fosphenytoin; and some patients may fail to respond to these agents also. These patients are said to have super-refractory status epilepticus (SRSE), and they are administered sedative anesthetics to induce coma. Respiratory complications like pneumonia, respiratory failure, and edema are not uncommon in SE; and drugs used for SE may compound and worsen these respiratory symptoms. Roughly half of the people with SE have a prior history of epilepsy- in these individuals; SE often results due to low levels of AEDs. In people that have SE without a history of epilepsy, causes of SE range from trauma, CNS infection, stroke to metabolic disturbances.

The neuronal mechanisms for SE can be one of the following (or a combination of the two): 1) A breakdown of the mechanism that would normally terminate a seizure, 2) the neuronal environment becomes conducive to prolonged seizure activity. That being said, the specifics involved are not fully understood. Gamma amino butyric acid (GABA) is an inhibitory neurotransmitter, and has been shown to be involved in seizures. In the brain, GABA acts on its receptors known as GABAA receptors (GABAARs); these receptors are present on the neuronal cell membrane. Typical AEDs stop seizures by acing on these receptors. However, with continuous seizures, these receptors internalize (i.e. are transported inside the cell), as a result of which AEDs are no longer effective as seizures lengthen in time.

Continuous seizures as in SE lead to alterations in the brain on a short-term basis (i.e. minutes and hours), and on a long-term (weeks, months, sometimes years) basis. For instance, once a patient has SE, the risk of a subsequent seizures is 3.3 times higher, than in patients with a seizure that does not progress to SE.

Electroencephalography (EEG) is typically used to diagnose SE. Other tests include a laboratory serum check to look at levels of AEDs, other drugs, alcohol etc. Other tests depend on the presentation and history of the patient. Neuroimaging techniques such as MRI may be used to evaluate whether the patient has tumor, stroke, or other structural or physical abnormalities in the brain. SE is a medical emergency, and treatment usually starts often even before admission into hospital (often with paramedics, where the first

priority is to stabilize cardiorespiratory function). SE may occur in pregnancy as well, and the reasons for this are women with a history of epilepsy prior to conception, new-onset gestational SE, or eclampsia. In pregnant women with SE, aggressive seizure control is of utmost importance.

The past few years have seen advances in the study of SE; still, there is a lot more that needs to be done. Experimental animals such as rats and mice are used in the lab to give clues on what might make seizures progress without a stop. EEG plays an essential role to diagnose SE, but there is a need to standardize EEG results so as to facilitate consistent and quick interpretation. Rapid diagnosis will lead to aggressive treatment, and ultimately better outcomes. For next issues of NYU FACES newsletter, I will

present in detail studies that have looked at SE in experimental animals.

As a basic scientist, Sloka Iyengar, PhD used animal models of epilepsy to understand what makes the epileptic brain susceptible to seizures and comorbidities. As a clinical researcher, Sloka facilitated clinical trials for people with epilepsy. Currently, she works as a healthcare consultant at Boston Strategic Partners. She is a science writer and science advocate, and has visited Capitol Hill to lobby for increased science funding. In her non-science time, Sloka is a professional dancer and an avid swimmer. You can visit her at www.slokaiyengar.com

3) EPILEPSY CONFERENCE By: Dana Pirolli

The FACES Epilepsy Conference is truly a remarkable experience. The level of compassion, knowledge, and

advice from professionals and others attending the conference is beyond what words could describe. I have

gone to many FACES events, and this one in particular always seems to captivate my interest every year.

Like many others, I too suffer with epilepsy. Three years ago, I decided to volunteer at the conference and it

changed my life. Attending the conference brought more understanding, more questions, and I witnessed

individuals create a stronger bond within the epilepsy community. I met people who inspired me and

shared insight to how they deal with their diagnosis. FACES always goes above and beyond to make sure

everyone feels comfortable and every voice is heard. With full confidence I can say that if you are looking for

a place to learn and gain support with this condition, then attending the FACES conference is a wonderful

opportunity. There are multiple diverse sessions you can choose to sit-in on – from new found research to

learning how to cope, this conference allows you to feel more confident with understanding the diagnosis.

Something that I have always treasured about the conference was listening to all the various stories and

accounts of people who are living with epilepsy or those who are caregivers to those diagnosed with it.

Listening to what they went through and how they feel makes you realize that you are not alone in your

journey. I have found that people seem to be more receptive to sharing and discussing their experiences

with others there. At the end of the day, we are all essentially trying to comprehend what we still don’t

know. We are all trying to adapt to the cards that we have been dealt. And the one thing that creates us to

be more united is understanding this condition and being there for others.

4) HONORING DR. VAZQUEZ

FACES and the NYU Langone Comprehensive Epilepsy Center are proud of Dr. Blanca Vazquez for receiving

the Distinguished Service Honoree award at the second annual Into The Light Dinner Gala, hosted by the

Epilepsy Foundation of Metropolitan New York (EFMNY) on Thursday, April 20, 2017. Dr. Vazquez is a

newly appointed member of the foundation’s Professional Advisory Board, and is a nationally recognized

advocate for the provision of quality care to persons with epilepsy and to those persons who are

underserved. She has dedicated over 25 years of support to the EFMNY and is aligned with its mission to

raise awareness while providing quality social services to persons with epilepsy and their families.

5) IEP MEETING By: Peggy Quinlan Stressed out over your child’s IEP meeting? Well, you’re not alone.

My son was having multiple seizures every day for four and a half years. I was told by teachers that he

would not graduate with a Regents diploma but he did and graduated at the top 10 percent of his graduating

class. He’s now finishing his freshman year in college. It wasn’t easy and it took so much work and positive

thinking but I can see the outcome now. Having an Individualized Educational Program (IEP) helped fill in

all the gaps caused by multiple seizures. I’m happy to say that thanks to Dr. Devinsky and the team at NYU,

Ryan has been seizure free for over 3 years. Parents and students with disabilities have rights and knowing

those rights enable parents to advocate from a position of strength. I would like to share some of the things

I learned from my experiences.

An IEP is a document that is formed to meet a child’s unique needs. Walking into a conference room full of

teachers, staff, psychologist, the head of special education and other professionals can be intimidating.

When a child has seizures, life can be unpredictable. Coming up with an individual educational plan for a

student with changing needs is difficult but possible. Being prepared will enable you to be a strong

advocating for your child.

An IEP meeting includes various people that have different perspectives and professional expertise. Parents

are a crucial part of the IEP team. All members of the team come together and form the plan. Students can

attend meetings if appropriate. Teachers and professional staff will discuss your child’s present level of

academic achievement and functional performance. The team will explain the results of the evaluation and

give you a baseline and move forward by setting goals and benchmarks. You will receive updates as to your

child’s progress in meeting those goals. If your child isn’t making progress than it may be time to reassess

the IEP. Students may need additional services or support especially when they miss school due to seizures

or hospitalization. You can ask your school district about Extended Year Services (EYS) if you think it’s

appropriate for your child.

The IEP team must collaborate and discuss specific information including the parents’ ideas for enhancing

their child’s education. The US Department of Education has excellent resources for parents: A Guide to the

Individualized Education Program http://www.parentcenterhub.org. The Epilepsy Foundation has a free

Advocate’s Manual that I took with me to IEP meetings. The manual is called Legal Rights of Children with

Epilepsy in School: An Advocate’s Manual. Another excellent source of information is the National

Information Center for Children and Youth with Disabilities (NICHCY). Information on autism spectrum and

ABA therapy: http://www.autismspeaks.org

Be confident in your role as an expert on your child. There are steps you can take to prepare for a successful

IEP meeting. Research your child’s disability(s) and how it effects learning and behavior. Teachers and staff

should be using the most effective researched based instructions methods IDEA 2004. Knowing what they

are is important.

You can’t predetermine what the the IEP team will recommend but you can make a list of the services,

accommodations and or modifications or supports your child might need. For example, speech language

services, counseling, Applied Behavioral Analysis (ABA).

Bring documentation such as doctor’s notes, evaluations, state and local assessments, tests, quizzes, emails,

progress reports, report cards or any pertinent information that will give a better understanding of your

child. Talking about your child’s gifts and talents as well as your child’s struggles helps the IEP team get a

better understanding of your child.

I think it’s important to mention that behavioral problems at school are often a manifestation of a disability.

If you suspect problem behavior at school is due to an undiagnosed disability you can request an evaluation.

If the school is dragging its feet you can remind them to consider Child Find (IDEA Part B 1412). That might

get the ball rolling.

Students with epilepsy are at an increased risk to suffer from Attention Deficit Disorder and Attention

Deficit Hyperactivity Disorder. Students are also at a higher risk of working memory and executive

functioning issues. Please see https://www.slideshare.net/nyufaces/william-macallister-phd for more

information.

Don’t be afraid to ask for more services or accommodations. If you think your child needs additional

support to reach their potential then go for it and ask. Research your child’s disability and how it effects

learning. Find out about the best researched based methods for addressing that disability. Write down what

you want for your child. Convey that to the IEP team after you have heard the results of the evaluations.

Lastly back up what you think your child needs with documentation. You can always request to reconvene

in a few months to see how your child is progressing with the IEP goals.

6) DR. BLUVSTEIN’S HIGHLIGHT

Congratulations Dr. Bluvstein!

Dr. Judith Bluvstein was selected as a recipient of the 2017 “Mujeres Destacadas”- a recognition given

annually to the most outstanding women in the community. She was highlighted in the magazine “El Diario”

for her impressive work in epilepsy research!

7) AAN ADVOCATE STATEMENT

For the first time, the American Academy of Neurology (AAN) and the American Epilepsy Society (AES) are issuing a definitive and public recommendation for neurologists to inform all populations suffering from epilepsy about the risk of Sudden Unexpected Death in Epilepsy (SUDEP), the most common cause of mortality for people with epilepsy. Every patient and parent deserves and needs to be educated about the range of risks that accompany epilepsy, including one as serious as SUDEP. The guidelines send the critical message that anyone who suffers generalized tonic-clonic seizures is at risk for SUDEP. The frequency of these seizures elevates the risk, and people who have three or more convulsive seizures per year face a 15-fold increased threat. We hope these recommendations lead to increased disclosure rates and better standards of care. Yet much more remains to be done to advance our understanding of SUDEP and its prevention. Click on link for more info: AAN and AES Issue Public Recommendations for SUDEP

8) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

FUDGE Each serving provides: 1 bar of 21 Calories: 164 Fat: 15.5 g Saturated fat: 9.5 g Carbohydrates: 5.2 g Sugar: 2.8 g Sodium: 58 mg Fiber: 1.6 g Protein: 3.4 g

*Nutrition information is a rough estimate for 1 of 21 bars calculated with 3 Tbsp maple syrup and no added salt or vanilla.

Ingredients:

2 cups (120 g) desiccated (finely shredded) unsweetened coconut

1 cup (256 g) creamy peanut butter (best ingredients: just peanuts + salt)

1/2 cup (120 ml) melted coconut oil

3–5 Tbsp (45-75 ml) maple syrup, or other sweetener of choice, i.e. stevia

optional: Pinch sea salt (depending on saltiness of PB)

optional: 1 tsp pure vanilla extract

TOPPINGS optional

Crushed peanuts

Coconut flakes

Directions:

1. Line a standard 9x5-inch loaf pan with parchment paper. Set aside.

2. To a food processor, add desiccated coconut and blend on high until

a creamy butter is formed - about 4 minutes. Scrape down sides as

needed.

3. Then add peanut butter and melted coconut oil and mix once more. Then add maple syrup 1 Tbsp

(15 ml) at a time until desired sweetness is reached. If you add too much maple syrup, the mixture

can seize up and get thick. If that happens, thin with a bit more melted coconut oil.

4. Optional: Add sea salt and vanilla and mix once more. Taste and adjust flavors as needed, adding

more salt or vanilla for overall flavor or maple syrup or stevia for sweetness.

5. Transfer mixture to lined loaf pan and spread into an even layer. You can add crushed peanuts or

coconut flakes on top, but I chose not to.

6. Freeze until firm - about 15 minutes. Then use a hot knife to slice into even squares - about 21. Enjoy

immediately and store leftovers in the refrigerator up to 10 days or in the freezer up to 1 month. If

frozen, let soften at room temperature for 5-10 minutes for best texture/flavor

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.

9) NOTEWORTHY NEWS

Top 10 National Press Articles

1) Maria Has Always Had a Special Place in Our Family and She Always Will 2) Cannabidiol Medicine with Cannabis to Minimize Severe Epilepsy Seizures 3) Meet the Families Fighting to Legalize Medical Marijuana in Their Kids’ Schools 4) Cannabidiol Cuts Seizures in LGS Patients 5) ‘Our 4-Year-Old Has Done More Drugs Than Anyone We Know' 6) How to Avoid Getting Horrible Jet Lag, According to Experts 7) Do Asians Have Harder Heads? On Sports Concussions and the Need for a Fairer, Medical Research Funding Policy

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 5, 2017

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.