IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSY January 5, 2011 Cary Kreutzer Community Education Director USC UCEDD, Children’s Hospital Los Angeles (323) Bill Stack Associate Director Epilepsy Foundation Northern California (925)

Health Resources Services Administration (HRSA) Department of Health and Human Services Maternal and Child Health Bureau Four demonstration projects – USC UCEDD CHLA – Dartmouth – Washington State Health Department – Epilepsy Foundation – Florida, New York Project Access – September 2004 – March 2008 (Round 1) – September 2007 – August

Goals & Objectives The overall goal of the project is to improve access to health care and related services for children and youth with epilepsy in rural and frontier communities in AK, CA, NV and WY. 3

4 California State Team Neva Hirschkorn, Executive Director, Epilepsy Foundation of Northern California William Stack, Associate Director, Epilepsy Foundation of Northern California Kathryn Smith, USC UCEDD Childrens Hospital Los Angeles Cary Kreutzer, USC UCEDD Childrens Hospital Los Angeles

Epilepsy Foundation Northern CA 5

EFNC  Public Awareness  Community Education  Information Services ◦ Phone ◦ Mail ◦  Support ◦ In-person support groups ◦ Online forums ◦ Epilepsy Connection ◦ Individual Support  Film Loan Library and Educational Materials  Advocacy ◦ Public Policy Institute ◦ Kids Speak Up, Speak Out ◦ Epilepsy California ◦ Coalitions  Camp Coelho  Family Retreat  Social Excursions  Events ◦ Conferences ◦ Stroll ◦ Gala 6

What Is the Difference Between Epilepsy & Seizures? Epilepsy is a disorder characterized by recurring seizures (also known as “seizure disorder”) A seizure is a brief, temporary disturbance in the electrical activity of the brain 7 A seizure is a symptom of epilepsy

Who Has Epilepsy? About 3 million Americans have epilepsy Roughly 200,000 new cases of seizures and epilepsy occur each year 50% of people with epilepsy develop seizures by the age of 25; however, anyone can get epilepsy at any time Now there are as many people with epilepsy who are 60 or older as children aged 10 or younger 8

What Causes Epilepsy? In about 70% of people with epilepsy, the cause is not known In the remaining 30%, the most common causes are: – Head trauma – Infection of brain tissue – Brain tumor and stroke – Heredity – Lead poisoning – Prenatal disturbance brain development 9

Classifying Epilepsy and Seizures Classifying epilepsy involves more than just seizure type Seizure types: Partial Generalized SimpleComplexAbsenceConvulsive 10 Consciousness is maintained Consciousness is lost or impaired Altered awarenessCharacterized by muscle contractions with or without loss of consciousness

Seizure Triggers Missed medication (#1 reason) Stress/anxiety Hormonal changes Dehydration Lack of sleep/extreme fatigue Photosensitivity Drug/alcohol use; drug interactions 11

First Aid for Seizures  Stay calm and track time  Do not restrain person, but help them avoid hazards ◦ Protect head, remove glasses, loosen tight neckwear ◦ Move anything hard or sharp out of the way ◦ Turn person on one side, position mouth to ground  Check for epilepsy or seizure disorder ID  Understand that verbal instructions may not be obeyed  Stay until person is fully aware and help reorient them  Call ambulance if seizure lasts more than 5 minutes or if it is unknown whether the person has had prior seizures 12

Potentially Dangerous Responses to Seizure DO NOT Put anything in the person’s mouth Try to hold down or restrain the person Attempt to give oral anti-seizure medication Keep the person on theirback, face up throughout convulsion 13

When to Call 911 or Emergency Medical Services  A convulsive seizure occurs in a person not known to have seizures or lasts more than 5 minutes  A complex partial seizure lasts more than 5 minutes BEYOND its usual duration for the individual  Another seizure begins before the person regains consciousness  Also call if the person: ◦ Is injured or pregnant ◦ Has diabetes/other medical condition ◦ Recovers slowly ◦ Does not resume normal breathing 14

A Spectrum of Severity 15 Uncomplicated epilepsy, Seizures controlled with medication Seizures not completely controlled by treatment; Epilepsy lowers standard of living due to social, emotional, and educational problems Seizures refractory to treatment; Epilepsy is disabling due to frequent seizures and other problems

Sutter Neuroscience UC Davis Stanford UCSF Pacific Epilepsy Program Pediatric Epilepsy Centers 16

Epilepsy Support Groups – San – Mountain View – Walnut Creek – – – Vacaville – Monterey – Santa Cruz * – San Luis Obispo * – Santa Barbara* – Shasta/Butte ^ or parent specific *outside of EFNC territory ^ No regular meeting time

Helping Other People with Epilepsy – Community Education Program – Enables volunteers to tell their story Training – Train-the-trainer – Train-the-mentor – Distance vs. in person Multimedia presentation 18

19 National Resources

20 Epilepsy Foundation of America and Project Access

Online Community Forums Monitored for accuracy Different groups for different needs Excellent for Rural populations 21

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28 Print Materials Epilepsy Resources  Parent Resource Guide (English, Spanish, Chinese, Farsi)  Preschool Guide  California Policy Brief  Medication Substitution (English and Spanish)  Seizure Description Tool (English, Spanish, Chinese, Farsi, Vietnamese) Epilepsy Foundation Websites Epilepsy Foundation of Northern California Epilepsy National Foundation Epilepsy Audios 1.Childhood Epilepsy Syndromes and their Neuro-Developmental Impact 2.Epilepsy, also called a seizure disorder, is a neurological (brain) disorder 3.Diagnosing and Understanding Childhood Epilepsy 4.What are the different types of epilepsy?

Training Strategy Conducted distance training targeting primary care providers and parents using: – teleconference – Videoteleconference – Podcast – web-based – Local media – newspaper, radio (including Piolin Show - Spanish) – Libraries – The 9 most rural Northern CA Counties – Multiple languages for products and publications 29

Podcasts Introduction to Epilepsy Introduction to Epilepsy in Spanish Epilepsy and Women Controlling Epilepsy with Medicine 30

Radio PSA Spanish-speaking Pediatrician contacted radio station, Piolin (Tweety Bird in the Morning) Show. Radio station asked that we send the script for Piolin to record for the show. Show aired with contact number for EFNC, calls received 31

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Social Media Networks Know That You Are Not Alone !! 33

Wyoming Epilepsy Assoc. 30 sec. PSA Know That You Are Not Alone !! 34

Ordering Products Materials available via web pages Order form 35

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