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Epilepsy 101 Section 1

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

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Epilepsy 101 Section 1

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  1. Epilepsy 101Section 1 Bill StackAssociate DirectorEpilepsy 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

  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 A seizure is a symptom of epilepsy

  5. The Brain Is the Source of Epilepsy • 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 Simple Complex Absence Convulsive • Consciousness • is maintained • Consciousness • is lost or impaired • Altered awareness • Characterized 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

  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

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

  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

  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

  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

  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. 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

  16. A Resource Guide for California ParentsSection 2 Bill StackAssociate DirectorEpilepsy 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

  23. 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

  24. Link to Resource Guides • http://www.epilepsynorcal.org/docs/Parent_Guide.pdf • http://www.epilepsynorcal.org/docs/Spanish_Parent_Guide.pdf • http://www.epilepsynorcal.org/template.php?pid=36

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

  26. 5700 Stoneridge Mall Road Suite 295 Pleasanton, California 94588 (925) 224-7760 or (800) 632-3532 Fax (925) 224-7770 www.epilepsynorcal.org

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