1. Epilepsy 101 Section 1 Bill Stack Associate Director Epilepsy Foundation Northern California

2. Historical Figures

3. Groups at Increased Risk for Epilepsy About 1% of the general population develops epilepsy The risk is higher in people with certain medical conditions: – Mental retardation – Cerebral palsy – Alzheimer’s disease – Stroke – Autism 3

4. Epilepsy & Seizures Epilepsy is a neurological disorder characterized by recurring seizures – also known as a “seizure disorder” A seizure is a brief, temporary disturbance in the electrical activity of the brain 4 A seizure is a symptom of epilepsy

5. The Brain Is the Source of Epilepsy 5 All brain functions -- including feeling, seeing, thinking, and moving muscles -- depend on electrical signals passed between nerve cells in the brain A seizure occurs when too many nerve cells in the brain “fire” too quickly causing an “electrical storm”

6. Classifying Epilepsy and Seizures Classifying epilepsy involves more than just seizure type Seizure types: Partial Generalized SimpleComplexAbsenceConvulsive 6 Consciousness is maintained Consciousness is lost or impaired Altered awarenessCharacterized by muscle contractions with or without loss of consciousness

7. 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 7

8. Symptoms That May Indicate a Seizure Disorder Periods of blackout or confused memory Occasional “fainting spells” Episodes of blank staring in children Sudden falls for no apparent reason Episodes of blinking or chewing at inappropriate times A convulsion, with or without fever Clusters of swift jerking movements in babies 8

9. Seizure Triggers Missed medication (#1 reason) Stress/anxiety Hormonal changes Dehydration Lack of sleep/extreme fatigue Photosensitivity Drug/alcohol use; drug interactions 9

10. How Is Epilepsy Diagnosed? Clinical Assessment – Patient history – Tests (blood, EEG, CT, MRI or PET scans) – Neurologic exam ID of seizure type Clinical evaluation to look for causes 10

11. Mood and Co-occurrences Depression Anxiety Learning Disabilities Osteoporosis Fatigue Weight Fluctuation

12. Types of Treatment Medication Surgery Nonpharmacologic treatment – Ketogenic diet – Vagus nerve stimulation – Lifestyle modifications – New Therapies – RNS/DBS 12

13. 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

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 14

15. 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 15

16. A Resource Guide for California Parents Section 2 Bill Stack Associate Director Epilepsy Foundation Northern California

17. Background Federally Funded Health Resources Services Administration (HRSA) Grant “Improving Access to Care for California Children and Youth with Epilepsy” University of Southern California – University Center for Excellence in Developmental Disabilities – Childrens Hospital Los Angeles

18. Purpose To improve access to care To empower parents To connect individuals with resources To pursue system changes through policy To provide support and educational opportunities

19. Section 1 – Understanding Epilepsy Epilepsy 101 – Describing seizures – Causes – Triggers – Specialized care for complex cases Basic information with links to more in depth medical information

20. Section 2 – Access to Care and Services Explanation of Health Insurance Medication Assistance Programs Medical Team Participants Coordinating Care California Social Services – California Children’s Services – Regional Centers – Health Families/Medi-CAL

21. Section 3 – Advocacy and Support Family Support – In person – Online – Epilepsy Connection Educational Challenges – Access to Medicines – Individual Education Plans – Cognitive Challenges

22. Section 4 - Tools and References Seizure Log Seizure Description Sheet Seizure Action Plan (Form) Doctor’s Visit Notes/Tips Child’s Profile Medication Log

28. Penry Travel Fund Travel must be greater than 50 miles $2000 maximum, per family, over a two year period Requires a letter from the healthcare team at desired location Original receipts required Difficult to obtain retroactive re-imbursement Fund of last resort http://www.epilepsynorcal.org/docs/Advocacy_Penry.pdf

29. Link to Resource Guides http://www.epilepsynorcal.org/docs/Parent_ Guide.pdf http://www.epilepsynorcal.org/docs/Parent_ Guide.pdf http://www.epilepsynorcal.org/docs/Spanish_ Parent_Guide.pdf http://www.epilepsynorcal.org/docs/Spanish_ Parent_Guide.pdf http://www.epilepsynorcal.org/template.php? pid=36 http://www.epilepsynorcal.org/template.php? pid=36

30. CONTACT INFORMATION Bill Stack (925) 224-7760 williams@epilepsynorcal.org

31. 5700 Stoneridge Mall Road Suite 295 Pleasanton, California 94588 (925) 224-7760 or (800) 632-3532 Fax (925) 224-7770 www.epilepsynorcal.org