om a parent after his son received exemplary care at

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The following is a thank you note sent to Dean Grossman fr

NYU Langone Health. Kudos to all involved on providing such an incredible patient experience.

IN THIS ISSUE:

1. ATTITUDE OFGRATITUDE

2. SPORTS TALK OVER DINNER BY RAO’S

3. LAST CALL FOR FALL EVENTS!

4. RESEARCH HIGHLIGHT – EPILEPSY IN THE ELDERLY

5. PEACE OF MIND RECAP – PREPARING FORTHE TRANSITIONTO ADULTHOOD

6. INCORPORATING MUSIC THERAPY INYOUR EPILEPSY CARE

7. PURPLE SPOON

8. NOTABLE NEWS

1.ATTITUDE OF GRATITUDE

The following is a thank you note sent to Dean Grossman from a parent after his son received exemplary

care at NYU Langone Health. Kudos to all involved on providing such an incredible patient experience.

Dear Dr. Grossman, While we are resting in our son’s room in Hassenfeld Children’s hospital, I had a

few minutes to send you a note about our hospital stay. In short we are totally blown away by our experience from beginning to end.

It started on Wednesday when we decided to go for an outpatient blood draw at Langone Tisch. We had about a two hour drive to NYC from Long Island. We called the hospital and had the pleasure of speaking with Patrice Chapman (a supervisor) in the outpatient blood lab. We explained that our son was autistic as well as being non-verbal. Under normal circumstances, blood draws are challenging. This blood draw was required as our son was being admitted for a 72 hour VEEG along with other bloodwork our pediatrician had requested. Ms. Chapman told me to ask for her when we arrived. When we arrived, the heartfelt care and attention provided by everyone in the outpatient lab was palpable. We travel with our own pappous board to make stabilization of our son more manageable. This longboard styled device with Velcro gives a soft hug which allows the staff to perform their work safely. Ms. Chapman took the time to listen to us. Parents of autistic kids are often very knowledgeable about what works for their kid(s), especially with regard to patient care issues. In the past it was rare to experience staff that was informed and caring. The norm was “we are the experts and we do it this way.” These days, with so many people on the spectrum, health care providers at every level have come a long way with respect to bedside manner, evaluation and treatment of this unique population. It’s obvious that the NYU team has been well trained including but not limited to listening, real empathy, expertise, along with sincere respect for family and individuals on the autistic spectrum. This resulted in the best patient care and treatment our family has ever experienced. Starting with a huge blood draw of approximately 30 tubes in a precise order, everyone at the lab that participated in my son’s care treated us as if we were family. Words cannot express how appreciative we are for the love and care we received. This was a huge success thanks to the amazing staff. Lab coats were removed to reduce white coat syndrome. No worries, blood borne pathogen precautions were followed.

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Next we arrived at the Hassenfeld Children’s Hospital for our son’s 72 Hour VEEG on Friday. We were again blown away by the experience. The facility was beyond amazing. The staff was welcoming, professional and kind every step of the way. We were permitted to calmly stabilize our son in his pappouse and to be present when he was put under anesthesia.

We exited the room and the staff carefully and lovingly prepped our son for his VEEG. When this procedure was completed, we were reunited and subsequently transported by a pleasant young man to room 8-15. I wondered whether or not this amazing experience would continue. Sure enough, when we arrived, we were met by numerous other staff members that wowed us. Our nurses, Kristen by day and Melanie in the evening were both terrific.

They clearly care about each and every patient and are proud of the hospital as well. It’s nice to see staff that like the organization they work with and for. This is rare today. We were promptly educated on the operation of the room automation. I don’t have to tell you that the nurses do a lot of the heavy lifting. They were there for us day and night, dealing with any issue that came up. I can’t say enough about your team. They were always present to assist patients and their families.

Saturday, I had the pleasure of taking my son to a music therapy class on the 8th floor. There were families present from all over the world with a variety of health conditions. Laura and Shannon were uplifting. For approximately 20+ minutes, all of the children were transported to a special place where there was no pain. They played keyboard, drums and maracas as Shannon played the guitar and sang for everyone. By the end of the session, all of the kids and their parents were engaged and happy. I tried to hide my tears. For a few minutes I felt so happy and blessed to be somewhere that not only provided cutting edge care, but also a place where I could truly decompress in spite of my child’s health issues.

We also had the pleasure of a cheerful clown visiting our son’s room. He raised everyone’s spirits. Nothing like a little humor, magic and fun to break up the day.

Then a beautiful service / support dog Oliver (a King Charles Cavalier) arrived. Was this really a medical facility? The lengths management has gone to not only deal with physical medical concerns, but also to address patients psychological well-being is astonishing.

And yet there was so much more, like the young man, Willis who lovingly visited daily to remind us to order food and robots that quietly assisted the staff and roam the hall transporting a variety of items. If there ever was an example of how it should be done, you have done it.

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Finally, I need to discuss the excellent medical care our son received. We met with two excellent doctors, a pediatrician, Dr. Cambell and a neurologist, Dr. Price. That said, the physicians were very thorough and felt that our treatment plan was working pretty well and that brainwave activity did not reveal seizure activity.

In closing, since 1982, I have been a NYS DOH Certified Health Care Provider in the field of EMS. I have been around hospitals most of my life. I have not experienced a more polished and complete organization in my life to say nothing about the spectacular buildout of the facility, the cutting edge security, the distributed technology in every room along with the cleanliness from floor to ceiling. Please pinch me. I must be dreaming. On behalf of our family permit me to thank you from the bottom of my heart. You and everyone who made this hospital possible should be very proud.

2. SPORTS TALK OVER DINNER BY RAO’SIt was a star-studded night at home with the Hauck family as they

enjoyed the Ultimate Sports Conversation, won at the FACES Gala! The night included an incredible dinner prepared by Rao’s Chef, Dino Gatto, with guests Chris Stone (Managing Editor at Sports Illustrated) and

Pictured left to right: Chris Stone, Marianne, Stephen, and Katie Hauck, Chef Dino Gatto, Tiki Barber, and Allan Houston

Allan Houston, (former NBA all-star, Olympic gold medalist and currently the Assistant General Manager of the NY Knicks), and Tiki Barber (former football running back who played for the New York Giants). Special thanks to Allyson and Andrew Wiener for donating this amazing prize!

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3. LAST CALL

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4. RESEARCH HIGHLIGHT – EPILEPSY IN THE ELDERLYBY SLOKA IYENGAR, PHD, PMP

Title of study: The Quality of Life of the Elderly with Epilepsy: A Systematic Review

Journal and citation: Seizure. 2018; 60:190-197. Authors: Charlotte J Baranowski

Purpose

• There exists extensive literature about pediatric epilepsy, and about specificissues in younger people with epilepsy

• However, such detailed information does not exist for elderly people withepilepsy even though the elderly constitutes a segment of the patient population

• Some of the causes for epilepsy in the elderly are traumatic brain injury, braintumors, and neurodegenerative disorders

• The purpose of the study was to study quality of life (QOL) in elderly populationwith epilepsy

• Specifically, the author sought to compare QOL in elderly people with epilepsywith those in younger age groups, and to find factors that might predict QOL inthe elderly

Description of the study

• Characteristics that the studies would have to fit in order to shed light on QOL inthe elderly with epilepsy were first defined

• Ten studies were reviewed, and the validity of each of these ten studies wasobserved using a pre-determined score

• QOL according to each of these ten studies were put together and compared toQOL in younger people with epilepsy

Summary of findings

• Overall QOL was found to be not different between the elderly and youngerpopulation with epilepsy

o This study included only tenstudies; the inclusion of morestudies may potentially showdifferences in QOL between theages

• One of the factors that affected QOL inthe elderly was fatigue and energy levels

o Some possible reasons fordecrease in energy in the elderlywith epilepsy are: age, presence ofseizures in sleep, and effect ofcertain medications

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• Seizure frequency was a strong predictor of QOL in the elderlyo It is possible that an increased seizure frequency would be particularly

dangerous in the elderly due to the number of injuries and furthercomplications

• The presence of epilepsy comorbidities was also found to affect QOLo The presence of depressive symptoms was found to be a predictor of

QOLo One contributing factor to depression in this population could be isolation

and additional age-related life changes

What do the results mean?

• Although it is known that the elderly with epilepsy constitute a vulnerablepopulation, not much is known about QOL in this unique population

• This study revealed the role of seizure frequency, accompanying comorbiditiesand depression as predictors of quality of life

• More research is needed to confirm the results of this paper; however, findingsprovide a framework to further investigate quality of life in the elderly populationwith epilepsy

Sloka Iyengar, PhD, PMP Sloka’s graduate work focused on mechanisms of epilepsies. For her

postdoctoral work, she investigated the effects of newborn neurons on seizure generation and propagation. She then worked as a clinical research coordinator and was involved in clinical trials in adults and children with refractory epilepsies. Currently, Sloka works as an Associate Medical Director at Phase Five Communications. She has lobbied for neuroscience funding on Capitol Hill, and teaches evolution and neuroscience to educators at the American Museum of Natural History. She is also a professional dancer, performing in the New York City area. You can find more about her

and contact her at www.slokaiyengar.com.

5. PEACE OF MIND RECAP –PREPARING FOR THETRANSITION TO ADULTHOODBY GARY MAYERSON

On September 18, 2019, I had the pleasure of speaking to dozens of parents and professionals about transition as part of FACES’ Peace of Mind lecture series. A heartfelt thank you to Dr. Orrin Devinsky and FACES for inviting me!

The transition to adulthood involves many moving pieces. It is essential that parents begin the transition process at an

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early stage to make sure that all of the needed components are in place when, at age 21 or earlier, their child ages out of the public school system. In New York state, while transition-related programming may start earlier, it is statutorily mandated starting the school year when the child turns 15.

I discussed the need to establish eligibility for the Medicaid waiver and the many supports and interventions that can be accessed from OPWDD (the Office for People With Developmental Disabilities). I also discussed the State’s move to a “self direction” model and the pros and cons of converting a Service Coordinator relationship into a self-directed program. There were so many excellent questions from the audience.

Many parents and school systems will put off transition until the child is at the very precipice of moving into adulthood. The wise parent refuses to allow transition to be treated as if it were only an afterthought. For a student to have a chance at a good outcome and a smooth transition, it is essential that parents and professionals be able to work collaboratively, understanding that every child’s needs are unique.

To see a recording of this lecture and others, visit http://faces.med.nyu.edu/events-programs/peace-mind-lecture-series.

6. INCORPORATING MUSIC THERAPY IN YOUR EPILEPSYCARE BY RINALDO MORELLI AND MEGAN WALSH

What is Music Therapy?

According to the American Music Therapy Association, music therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. After conducting a full assessment of each client’s needs, a music therapist uses musical interventions to address individualized goals, including emotional well-being, physical health, social functioning, communication abilities, and cognitive skills.

At NYU Langone Health, we are fortunate to have five music therapists working throughout the main campus hospital, two of which work closely with the pediatric and adult epilepsy populations. Megan Walsh, MA, LCAT, MT-BC is the Senior Creative Arts Therapist on the inpatient pediatric units. Rinaldo Morelli, MA, LCAT, MT-BC is the Senior Creative Arts Therapist on the adult neurology unit. Megan and Rinaldo sat down to talk us about the uses and benefits of music therapy for children and adults coping with chronic neurological conditions.

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According to Megan, music

therapy can help children and

adolescents of all ages, especially those

with developmental, psychological, and

physiological needs. Music fosters

connection, play, and self-expression – all important elements of a child’s world. With young

children, a music

therapist uses the

vibrant elements of

music within a

therapeutic

relationship to

enhance a child’s developmental

needs,

communication

abilities,

social/emotional

skills, and overall

quality of life.

Because of a child’s natural relationship

to music and play, participation in music

therapy promotes opportunities for

creativity, expression, and growth, which

is important for any child admitted to the

hospital.

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Music Therapy in Pediatric Epilepsy Care

familiar songs and musical preferences

that can be used to within the session.

She will offer the patient and family the

opportunity to select an instrument, then

supports them in music-making. Megan

has a toolbox of expressive interventions

- including songwriting, music technology

and production, and

music-focused

relaxations that she

uses to best serve

the need of the

patient and family in

the moment. For

children admitted to

the hospital for video

EEG monitoring,

Megan plays live

music at the bedside

to decrease feelings

of overstimulation

and distress for

children having leads

placed. Music

therapy sessions allow children to regain

a sense of control and autonomy of their

environment through their ability to direct

the musical space. The act of making

music, especially for a child with

epilepsy, highlights and nurtures a child’s strengths while promoting a positive

experience with family and hospital staff.

Megan typically begins bedside

sessions by gathering a musical history

of the patient and family, assessing for

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Music Therapy in Adult Epilepsy Care

Rinaldo understands that being offered a music therapy session may come as a

surprise to some patients. Here is how he typically introduces his services to a patient

admitted to the Neurology/Epilepsy unit at NYU Langone:

Music is therapy. People use music to help relax, relieve stress, or express

themselves when they can’t find the right words. Sometimes they use music to help themselves feel more comfortable in uncomfortable situations – like being

here in the hospital. You don’t have to be a musician to participate, as there is no such thing as ‘wrong or right’ in music therapy. You can listen to the music or

play an instrument if you’d like.

And just as Megan does, Rinaldo will ask a patient questions to assess how they are

handling their hospital stay. Questions are also asked regarding their musical background

and preferences. Based on the responses of the patient, Rinaldo will offer music

interventions that could best serve the patient’s current needs. If a patient shares that they are feeling anxious, Rinaldo may suggest an intervention called Music Relaxation

which is simply a meditation exercise with music. Rinaldo guides the patient through

simple deep breathing and imagery exercises while he plays music on several

instruments including the guitar, harmonica and ocean drum, an instrument that, when

played, sounds likes the ocean. If a patient is a musician themselves, they are asked if

they want to play an instrument with the therapist. Even if they have never played an

instrument before, they are offered the opportunity to play one whether it’s a shaker, drum, keyboard, etc. According to Rinaldo, playing music together helps to build social

connections and can decrease the isolation that patients may be experiencing during their

hospitalization. And if family members or friends are present, they are always invited to

join in on the music making. Music is also an excellent way to express feelings that are

hard to put into words. Songs have a way of capturing what we are going through so

Rinaldo will suggest and play songs that reflect those feelings.

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7. PURPLE SPOON

No-Bake Granola

This entire recipe yields ~13 servings. One ½ cup serving is ~275 calories, 26g fat, 2g net carbs at a 3:1 ratio.

Please contact your dietitian to adjust the recipe for you or your child’s ketogenic diet.

Ingredients:

• 41g (1/4 cup) chia seeds, ground

• 36g (1/4 cup) flaxseeds, ground

• 105g (1 cup) raw, sliced almonds

• 131g (1 cup) pecan pieces

• 78g (2/3 cup) hulled hemp seeds

• 4g cinnamon, ground

• 4g cardamom, ground

• 2g salt112g (3/4 cup) cocoa butter, melted(can substitute coconut oil)

• 1 tablespoon vanilla extract

• 1 teaspoon pure orange extract

Instructions:

• Grind chia seeds and flax seeds in coffeegrinder or food processor.

• Combine dry ingredients

• Melt cocoa butter and mix vanilla and orange extracts into melted cocoa butter

• Drizzle cocoa butter and extracts over dry ingredients

• Mix well until fully combined

• Store in cool place at room temperature for up to 1 week

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8. NOTEWORTHY NEWS

1. Seizures Stole Her Memory2. Sudden Unexplained Death of a Child3. Does Sleep Position Matter?4. In Brain’s Electrical Ripples Markers for

Memories Appear5. What Is Epilepsy?6. Miami-Area Hospital Diagnoses Medical Marijuana Patient with Drug Abuse7. What To Do When It’s Too Hot to Sleep8. How Seizures Can Kill People With Epilepsy in their Sleep9. Sudden Unexpected Death in Epilepsy: Sleep Deprivation as a Risk Factor10.Staccato Alprazolam Suppresses Epileptic Activity in Phase 2a Study11.How Cameron Boyce’s Epilepsy May Have Caused His Death at 2012.How Seizures Can Kill People with Epilepsy in Their Sleep13.Engage Therapeutics Announces Data from Phase 2a, Proof-of-Concept

Study of Staccato Alprazolam to Suppress Seizures in Patients withEpilepsy Published in Epilepsia

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