37 Helpful Epilepsy Resources

November is Epilepsy Awareness Month!

Epilepsy Facts

  • It is the 3rd most common neurological disorder in the United States
  • 2.7 million Americans have epilepsy
  • 468,000 are children 0-17
  • 50 million people have epilepsy worldwide
  • 1 in 26 people have epilepsy in their lifetime
  • 200,000 people in the United States will be diagnosed with epilepsy this year

The following links include information on symptoms, causes, complications, definition, types of seizures, and treatment:

Medical

Boston Children’s Hospital- Epilepsy Center
Cleveland Clinic-Epilepsy Center
e-medicine health
Everyday Health
FamilyDoctor.org
Healthline
Kids Health
Live Science
Mayo Clinic
Medline Plus
Neuroscience for Kids
WebMD
World Heath Organization (WHO)

Organizations and Foundations

 American Epilepsy Society

Promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy.

 Citizens United for Research in Epilepsy (CURE)

Cure’s mission is to cure epilepsy, transforming and saving millions of lives. Also identifies and funds research.

 Dravet Syndrome Foundation

Raises funds for research and increase awareness and provides support to individuals and families.

 Epilepsy Canada

Mission is to enhance the quality of life for persons affected by epilepsy through promotion and support of research and facilitation of education and awareness.

Image result for epilepsy foundation Epilepsy Foundation

National Voluntary agency dedicated solely to the welfare of more than 2 million people with epilepsy in the United States and their families.

A charity funding research into epilepsy, provides information about the condition and therapies, and their activities.
 Hope for Hypothalamic Hamartomas

A volunteer-based organization. The goal is to create information about the diagnosis, treatment, and support of individuals with HH.

 Intractable Childhood Epilepsy Alliance

Dedicated to improving lives of children affected by intractable epilepsy through evidence-based information and advocacy.

 Lennox-Gastaut Syndrome Foundation

Non-profit organization dedicated to improving the lives of individuals with Lennox-Gastaut Syndrome through research, programs and education.

  National Association of Epilepsy Centers

Strives to make high quality care available and affordable for epilepsy patients

Twitter -Keep up with the latest twitter feed or follow organizations that provide current information on epilepsy:

EPIC Long Island– Our very own non-profit organization of the month. Provides services for individuals with epilepsy and other disorders
Epilepsy Action– Leading member-led epilepsy charity providing information for people with epilepsy
Epilepsy Awareness– provides epilepsy training services to help raise standards and promote best practices.
My Epilepsy Team– Social network for people living with Epilepsy
Young Epilepsy– National charity working exclusively with children and young people in the UK

YouTube Video’s

Books on Epilepsy

Epilepsy: A patient and family guide

Epilepsy in Children: What every parent needs to know

Epilepsy 101: The ultimate guide for patients and families

Living well with epilepsy and other seizure disorders

Mommy, I feel funny! A child’s experience with epilepsy

 

 

 

 

36 Epilepsy Facts You Should Know

Epilepsy is a disorder of the central nervous system often caused by abnormal electrical discharges that develop into seizures. The following are additional facts on epilepsy and seizures:

  1. More people live with epilepsy than autism, spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.
  2. You can’t swallow your tongue during a seizure. It is physically impossible.
  3. You should never force something into the mouth of someone having a seizure.
  4. Don’t restrain someone having a seizure.
  5. Epilepsy is not contagious .
  6. Anyone can develop epilepsy.
  7. Epilepsy is not rare.
  8. 1 in 26 Americans will develop epilepsy in their lifetime.
  9. An estimated 3 million Americans and 65 million people worldwide live with epilepsy.
  10. In 2/3 of patients diagnosed with epilepsy, the cause is unknown.
  11. Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures). (SUDEP) and other seizure-related causes such as drowning and other accidents.
  12. Between 4 and 10 out of 1,000 people on earth live with active seizures.
  13. 3.4 million people in the United States have epilepsy.
  14. Epilepsy is not contagious
  15. 1/3 of people diagnosed with epilepsy have uncontrolled seizures because the available treatment does not work.
  16. SUDEP accounts for 34% of all sudden deaths in children.
  17. Epilepsy costs the U.S. approximately 15.5 billion each year.
  18. A seizure is a transient disruption of brain function due to abnormal and excessive electrical discharges in brain cells.
  19. Epilepsy is a disease of the brain that predisposes a person to excessive electrical discharges in the brain cell.
  20. It is diagnosed when 2 or more unprovoked seizures have occurred.
  21. It must be at least 2 unprovoked seizures more than 24 hours apart.
  22. About 14% have simple partial seizures.
  23. 36% have complex partial seizures.
  24. 5% have tonic-clonic seizures.
  25. Seizures can be caused by head trauma, stokes, brain tumor and a brain infection.
  26. Causes are unknown in 60 to 70% of cases.
  27. The prevalence is 1% of the U.S. population.
  28. Approximately 2.2 to 3 million in the U.S. have seizures.
  29. It affects all ages, socioeconomic and racial groups.
  30. Incidents are higher in children and older adults.
  31. Seizures can range from momentarily blanks to loss of awareness
  32. Almost 150,000 people in the U.S. develop epilepsy every year.
  33. No gender is likely to develop than others.
  34. 1/3 of individuals with autism spectrum disorders also have epilepsy.
  35. The prevalence of epilepsy in people with an intellectual disability is higher than the general population.
  36. It takes up to 5 times more energy for a person with epilepsy to complete even the most simple task.

Cerebral Palsy and Co-occuring Disorders

Cerebral Palsy is defined as a group of disorders of movement and posture causing limitations due to abnormal development in the brain. According to the Centers for Disease Control and Prevention (CDC), many children and adults with cerebral palsy also had at least one co-occurring condition and in some cases more than one. for example, it is not unusual for and individual to have a diagnoses of cerebral palsy with a co-occurring condition of epilepsy and an intellectual disability and associative  issues with an eating disorder.

Understanding both co-occurring conditions and associative disorders is essential in order to develop an effective teaching strategy.

associative issues include aspiration, dysphagia, digestive issues, seizures, intellectual disability, sleep disorder, and speech impairments.

The following links and articles includes information that contain research studies, articles and practical information.

 

Cerebral Palsy and Epilepsy– Cerebral Palsy Guidance

Cerebral Palsy and Seizures– Cerebral Palsy Guidance

Cerebral Palsy and Speech Therapy– Cerebral Palsy Group

Children with spastic cerebral palsy experience lower leg fatigue when walking study shows- Cerebral Palsy News Today

Common health problems associated with cerebral palsy- My Child Without Limits

Communication and swallowing issues for adults with cerebral palsy-EPI

Difficulties in swallowing and coughing in spastic cerebral palsy focus of study– Cerebral Palsy News Today

Digestive health tips for kids with cerebral palsy-Sarah Halstead

Gastrointestinal and nutritional issues in cerebral palsy-practicalgastro.ocom

How does cerebral palsy affect people?-Cerebral Palsy Alliance

Prevalence of cerebral palsy and intellectual disability among children- NCBI

Sleep disorders in kids with cerebral palsy often remain untreated study suggest– Cerebral Palsy News today

Sleep issues among children with cerebral palsy-CP-NET

Seizures in children with cerebral palsy and white matter injuries-Pediatrics

Understanding more about cerebral palsy and seizures– Murdoch Children’s Research Institute

Resources

Centers for Disease Control and Prevention

National Institute of Neurological Disorders and Stroke

What is a Generalized Seizure?

Click here to download PDF article

A generalized seizure, formally known as a gran mal seizure affects both sides of the brain, and starts in all parts of the brain at the same time. About 25 percent of people with epilepsy have generalized seizures. It affects all ages, socioeconomic and racial groups.

There are 4 phases of a generalized seizure:

  1. Prodromal. This is the first phase where an early sign may include a group of symptoms hours or days before the seizure including depression, difficulty concentrating, headaches, insomnia and mood changes.
  2. Aura. Typically, an aura occurs from a few seconds to a few minutes before the arrival of the seizure. Signs may include blurry vision, buzzing, ringing or an abdominal sensation.
  3. Tonic-Clonic. This is the phase where the whole body is affected. The body begins to stiffen and the person loses consciousness and falls. This is followed by a violent uncontrollable shaking. During this phase, the person may have difficulty breathing, an inability to swallow, may drool and begin to sweat.
  4. Postictal. Occurs at the end of the seizure, common signs include confusion, anxiety, depression, embarrassment, fear, memory loss, upset stomach and sleepiness.
There are 6 types of generalized seizures:
  1. Absence (Petit Mal). It occurs throughout the entire brain beginning and ending very quickly. The person becomes unconscious with a blank stare. It may appear the person is day dreaming.
  2. Tonic-Clonic. When the body stiffens and shakes. usually last 1 to 3 minutes.
  3. Clonic. When a person has a muscle spasm in the face, neck and arms may last several minutes.
  4. Tonic. The muscles in the arms, legs and trunk are affected. Usually last less than 20 seconds.
  5. Atonic. the muscles go limp and can cause a person to fall or head his or her head if they are standing.
  6. Myoclonic. Muscles suddenly jerk. The electrical impulses are strong enough to throw a person to the ground.
What Causes Epilepsy with Generalized Seizures?
Possible causes of epilepsy and seizures include:
  • genetics
  • a change in the structure of your brain
  • autism
  • an infections of the brain, such as meningitis or encephalitis
  • head trauma
  • a brain tumor
  • Alzheimer’s disease
  • a stroke, or a loss of blood flow to the brain resulting in brain cell death
  • congenital conditions, including Down syndrome or tuberous sclerosis

First Aid For Tonic Clonic Seizures:

Call 911 if:
  • The person has never had a seizure before.
  • the person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has a seizure back-to back.
  • The person is injured during the seizure.
  • The person has an additional condition like diabetes, or heart disease.
Steps
  • Ease the person to the floor.
  • Turn the person gently onto the side (this will help the person breathe).
  • Clear the area around the person of anything hard or sharp
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Loosen ties or anything around the neck including button on a shirt.
  • Time the seizure.
Familiarize Yourself With The Warning Signs 

Each person is different. Typically warning signs of a seizure may include:

  • Loss of consciousness
  • Stiffening of the body
  • Jerking of limbs
  • Slight twitching
  • A loss of awareness
Do Not:
  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

After the seizure:

After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.

Don’t try to stop the person from wandering unless he or she is in danger.

Don’t shake the person or shout.

Stay with the person until he or she is completely alert.

 

Resources

Epilepsy Ontario

Epilepsy Talk

Healthline

University of Chicago Medicine

WebMD

Epilepsy and Autism: What You Need To Know

Studies show that epilepsy are more common in individuals with autism than the general population. Studies show that in some cases, 20% of people diagnosed with autism also have an epilepsy disorder. Other studies indicate epilepsy prevalence estimates between 5% to 46%.

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

Epilepsy is a brain disorder which occurs when neurons in the brain experience a brief interruption causing a seizure to occur. Seizures vary from mild to severe and affects over 3 million Americans. There are different types of seizures:

  • Generalized Tonic/Clonic- A seizures where the whole brain is affected.
  • Absence Seizures- Generally start without any warnings. It affects children and last only for a few seconds.
  • Myoclonic Seizures- Are abrupt jerks of the muscle groups which originate from the spine.
  • Partial Seizures- The person may look as though he or she is in a trance.

There are many unanswered questions as to why epilepsy is more common in people with autism. There is some evidence the common underlying cause may be both are related to genetic and environmental causes and are both related to some type of brain disorder. Evidence does shoe however individuals with autism and epilepsy have worse behavioral and social outcomes than individuals diagnosed with autism only including issues with motor and daily living skills.

Signs for parents to look out for
  • May be difficult to determine especially in children diagnosed with severe autism spectrum disorder. Red flags include, staring episodes, stiffening of the body and shaking movements.
  • A medical evaluation will include brain imaging and an electroencephalogram (EEG).
Teaching Strategies

If you are an educator, be aware that after a seizure, the student will become tired. Allow the student an opportunity to rest.

Reference

Epilepsy Foundation

Medical News Today: Epilepsy and autism: Is there a link?

Neurologist Disorder Treatment. Epilepsy in patients with autism: Links, risks and treatment challenges. Frank McBesag- Published online 2017 Dec 18

Synapse- Autistic Spectrum Disorder Factsheet