Transcript Epilepsy 101 A Resource Guide for California Parents

Epilepsy 101
Section 1
Bill Stack
Associate Director
Epilepsy Foundation Northern California
Historical Figures
Famous People with Epilepsy
Van Gogh
Alfred Nobel
Julius Caesar
Charles Dickens
Napolean
Lord Byron
Alexander
Shelly
Peter the Great
Tennyson
Dostoevsky
Charles V
James Madison
Swift
1%
Joan of Arc
Lewis Carroll
Aristotle
Flaubert
Socrates
Moliere
Pythagoras
Dante
Isaac Newton
Tolstoy
Handel
Truman Capote
Tchaikovsky
Agatha Christie
Richard Burton
Blaise Pascal
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
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
4
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”
5
Classifying Epilepsy and Seizures
• Classifying epilepsy involves more than just
seizure type
• Seizure types:
Partial
Simple
Complex
Consciousness
is maintained
Consciousness
is lost or impaired
Generalized
Absence
Altered awareness
Convulsive
Characterized by
muscle contractions
with or without loss
of consciousness
6
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
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
Seizure Triggers
•
•
•
•
•
•
•
Missed medication (#1 reason)
Stress/anxiety
Hormonal changes
Dehydration
Lack of sleep/extreme fatigue
Photosensitivity
Drug/alcohol use; drug interactions
9
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
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
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
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
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
15
A Resource Guide for California Parents
Section 2
Bill Stack
Associate Director
Epilepsy 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 CONVULSI ONES
Directions:
Use this form to keep track of your child’s seizure activity. Your notes will help your nurse and physician in further treat ment
of your child.
Instrucciónes:
Los p a d r e s d e b e n u s a r e s t e f o r m u l a r i o p a r a r e g i s t r a r l a a c t i v i d a d c o n v u l s i v a d e s u h i j o . S u s a n o t a c i o n e s a y u d a r á n a s u
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-thecounter.
6
Write all of your questions down before visiting the doctor. (Doctor’s Visit Notes)
Tell the doctor:
1
2
3
4
5
6
7
How your child has been doing.
Information about successes and setbacks.
Detailed information about changes and symptoms that are different from your child’s normal status.
What you are concerned about.
When the symptoms started changing.
How often and when the symptoms occurred.
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.
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.
6
F5—Epilepsia y Desordenes de Convulsivos o Crisis Epilépticas: Una Guía de Recursos para las Familias
My Child’s Profile / El Archivo de mi Niño
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
Telephone / Teléfono


female / femenino
male / masculino
Home/ Casa
Work/ Trabajo
Mobile/ Celular
Home/ Casa
Work/ Trabajo
Mobile/ Celular
Home/ Casa
Work/ Trabajo
Mobile/ Celular
Home/ Casa
Work / Trabajo
Mobile / Celular
Address / Dirección
Parent or Guardian /
Padre o Guardián
Telephone / Teléfono
Address / Dirección
Parent or Guardian /
Padre o Guardián
Telephone / Teléfono
Address / Dirección
Emergency Contact /
Contacto de
Emergencia
Telephone / Teléfono
PRIMARY Health Ins urance / 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.
Sta r t d a te /
F ech a d e
c om ie nzo
Dr ug na me /
N om bre del m ed ica men to
D osag e /
D os is
F re qu ency /
F rec ue nc ia
Wh a t is it us ed fo r? /
¿ Para qu e lo u s a ?
En d d a te /
F ech a fin a l
C om me n ts /
C om en ta r io s
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
• [email protected]
5700 Stoneridge Mall Road
Suite 295
Pleasanton, California 94588
(925) 224-7760 or (800) 632-3532
Fax (925) 224-7770
www.epilepsynorcal.org