IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSY January 5, 2011

1. IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSYJanuary 5, 2011 Cary Kreutzer Community Education Director USC UCEDD, Children’s Hospital Los Angeles ckreutzer@chla.usc.edu (323) 361-3830 Bill Stack Associate Director Epilepsy Foundation Northern California Williams@epilepsynorcal.org (925) 224-7770

2. 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 2010

3. 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

5. Epilepsy Foundation Northern CA

6. EFNC • Public Awareness • Community Education • Information Services • Phone • Mail • Email • 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

7. 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 A seizure is a symptom of epilepsy

8. 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

9. 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

10. Classifying Epilepsy and Seizures • Classifying epilepsy involves more than just seizure type • Seizure types: Partial Generalized Simple Complex Absence Convulsive • Consciousness • is maintained • Consciousness • is lost or impaired • Altered awareness • Characterized by • muscle contractions • with or without loss • of consciousness

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

12. 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

13. 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 their back, face up throughout convulsion

14. 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

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

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

17. Epilepsy Support Groups • San Francisco@ • Mountain View • Walnut Creek • Oakland@ • Sacramento@ • Vacaville • Monterey • Santa Cruz * • San Luis Obispo * • Santa Barbara* • Shasta/Butte ^ • @teen or parent specific • *outside of EFNC territory • ^ No regular meeting time

18. 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

19. National Resources www.efa.org

20. Epilepsy Foundation of America and Project Access

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

22. www.epilepsyandmychild.org

23. www.epilepsyclassroom.com

24. www.takechargeteens.org

25. www.nomoreseizures.org

26. www.fundacionparalaepilepsia.org

27. www.epilepsy.com

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   http://www.epilepsynorcal.org • Epilepsy National Foundation    http://www.epilepsyfoundation.org/ • Epilepsy Audios • Childhood Epilepsy Syndromes and their Neuro-Developmental Impact • Epilepsy, also called a seizure disorder, is a neurological (brain) disorder • Diagnosing and Understanding Childhood Epilepsy • What are the different types of epilepsy?

29. 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

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

31. 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

32. www.epilepsynorcal.org/project-access

33. Wyoming Epilepsy Association Know That You Are Not Alone !! Social MediaNetworks

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

35. Ordering Products • Materials available via web pages • Order form