Epilepsy 101Section 1

Bill StackAssociate Director

Epilepsy Foundation Northern California

Historical FiguresFamous People with Epilepsy

1%

Julius Caesar

DostoevskyPeter the Great

FlaubertMoliere

Napolean

SwiftJoan of Arc

James Madison

Handel

Charles V

Van Gogh

Tchaikovsky

Alfred Nobel

PythagorasSocrates

Alexander

Aristotle

Dante

Blaise Pascal

Isaac Newton

Lewis Carroll

Tennyson

Lord ByronCharles Dickens

Shelly

Richard Burton

Truman CapoteAgatha Christie

Tolstoy

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

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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

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A seizure is a symptom of epilepsy

The Brain Is the Source of Epilepsy

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• 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”

Classifying Epilepsy and Seizures

• Classifying epilepsy involves more than just seizure type

• Seizure types:

Partial GeneralizedSimple Complex Absence Convulsive

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Consciousnessis maintained

Consciousnessis lost or impaired

Altered awareness Characterized bymuscle contractionswith or without lossof consciousness

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

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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

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Seizure Triggers

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

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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

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Mood and Co-occurrences

• Depression• Anxiety• Learning Disabilities• Osteoporosis• Fatigue• Weight Fluctuation

Types of Treatment

• Medication• Surgery• Nonpharmacologic treatment

– Ketogenic diet– Vagus nerve stimulation– Lifestyle modifications– New Therapies – RNS/DBS

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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

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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

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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 convulsion15

A Resource Guide for California Parents

Section 2Bill Stack

Associate DirectorEpilepsy Foundation Northern California

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

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

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

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

Section 3 – Advocacy and Support

• Family Support– In person– Online– Epilepsy Connection

• Educational Challenges– Access to Medicines– Individual Education Plans– Cognitive Challenges

Section 4 - Tools and References

• Seizure Log• Seizure Description Sheet• Seizure Action Plan (Form)• Doctor’s Visit Notes/Tips• Child’s Profile• Medication Log

F1—Epilepsia y Desordenes de Convulsivos o Crisis Epilépticas: Una Guía de Recursos para las Familias

SEIZURE LOG / REGISTRO DE CONVULSIONES Directions: Use this form to keep track of your child’s seizure activity. Y our notes will help your nurse and physician in further treatment

of your child.

Instrucciónes: Los padres deben usar este formulario para registrar la actividad convulsiva de su hijo. Sus anotaciones ayudarán a su enfermera y su doctor en el tratamiento posterior de su hijo .

Date / Fecha

Time Seizure Began /

Hora en que la convulsión comenzó

Time Seizure Ended /

Hora en que la convulsión

terminó

Who Was Notified ? / ¿ A quién se le avisó?

Description of Seizure / Describa la convulsión

Any Intervention ? / ¿Hubo alguna intervención?

F4 (b) -Epilepsy and Seizure Disorders: A Resource Guide for Parents

DOCTOR’S VISIT TIPS

Get ready 1 Bring any information that you have about your child. (My Child’s Profile) 2 Bring pen/pencil and paper to take notes. 3 Check your data and be specific about all changes in your child’s health status. (Seizure Log, Seizure Description Sheet) 4 Have a list of all medications your child is currently using, including over-the-counterdrugs. (Medication Log) 5 Have a list of reactions your child has experienced from any medications, prescribed or over-the-counter. 6 Write all of your questions down before visiting the doctor. (Doctor’s Visit Notes)

Tell the doctor: 1 How your child has been doing. 2 Information about successes and setbacks. 3 Detailed information about changes and symptoms that are different from your child’s normal status. 4 What you are concerned about. 5 When the symptoms started changing. 6 How often and when the symptoms occurred. 7 What you have tried to relieve the symptoms and your child’s response.

Don’t leave the doctor’s office without: 1 Instructions and name(s) for new and old medication(s). 2 Asking how long the child will be on medication and whether there are refills. 3 Asking about possible side effects or cross-reactions of medication(s). 4 Asking what the child can eat with new medication(s). 5 Asking if you need authorization before filling the prescription for your specific insurance provider.

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7 Understanding all follow-up questions including how to report changes in symptoms. Asking the doctor if you need a follow-up appointment. Making the next appointment, if needed. This tool was developed with funding from the federal Maternal and Child Health Bureau, Health Services and Resources Administration under grant #H98MCO3905, funded to the USC UCEDD, Childrens Hospital Los Angeles, through its initiative, Project Access: Improving Care for Children with Epilepsy. Support was also provided by two other partners in Project Access: the National Initiative for Children’s Healthcare Quality (NICHQ), under grant #U23MC038893, and the Epilepsy Foundation, under grant # U23MC03909.

F5—Epilepsia y Desordenes de Convulsivos o Crisis Epilépticas: Una Guía de Recursos para las Familias

M y C h i l d ’ s P r o f i l e / E l A r c h i v o d e m i N i ñ o

Name / Nombre

Date of Birth / Fecha de Nacimiento

Height / Estatura Eye Color / Color de Ojos

Weight / Peso Blood Type / Tipo de Sangre

Languages Spoken / Idiomas Hablados

Sex / Género female / femenino male / masculino

Telephone / Teléfono Home/ Casa Work/ Trabajo Mobile/ Celular

Address / Dirección

Parent or Guardian / Padre o Guardián

Telephone / Teléfono Home/ Casa Work/ Trabajo Mobile/ Celular

Address / Dirección

Parent or Guardian / Padre o Guardián

Telephone / Teléfono Home/ Casa Work/ Trabajo Mobile/ Celular

Address / Dirección

Emergency Contact / Contacto de Emergencia

Telephone / Teléfono Home/ Casa Work / Trabajo Mobile / Celular

PRIMARY Health Insurance / Aseguranza Principal

Health Insurance Plan / Plan de Aseguranza

Plan Number / Numero (#) de Plan

SECONDARY Health Insurance / Aseguranza Adicional

Health Insurance Plan / Plan de Aseguranza

Plan Number / Numero (#) de Plan

F6—Epilepsia y Desordenes de Convulsivos o Crisis Epilépticas: Una Guía de Recursos para las Familias

MEDICATION LIST / LISTA DE MEDICAMENTOS

Directions: Complete the chart below, listing all medications (prescription, over-the-counter, vitamins and supplements) your child takes. If the directions for a

medication changes, mark through that row and begin a new row with updated directions. Be sure to bring this sheet with you to all of your child’s medical appointments so you can review the information with your child’s providers.

Instructionnes: Complete la tabla de abajo, incluya todas las medicinas (con receta, sin receta, las vitaminas, los suplementos) que su niño/a toma. Si las

instrucctiones cambian en una medicina, haga una linea sobre las instrucciones anteriores, y empiese una linea nueva con las nuevas instrucciones. Esté seguro de traer esta hoga a todas las citas médicas del niño para que pueda revisar la informacion con los doctores de su niño/a.

Start date / Fecha de comienzo

Drug name / Nombre del medicamento

Dosage / Dosis

Frequency / Frecuencia

What is it used for? / ¿Para que lo usa?

End date / Fecha final

Comments / Comentarios

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

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

CONTACT INFORMATION

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

5700 Stoneridge Mall RoadSuite 295

Pleasanton, California 94588(925) 224-7760 or (800) 632-3532

Fax (925) 224-7770www.epilepsynorcal.org