37 Helpful Epilepsy Resources

epilepsy ribbon

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

 

 

 

 

Person-Centered Planning Tool Resources

What is Person-Centered Planning?

Person-Centered Planning (PCP) is a set of approaches designed to assist someone to plan their life and supports. It is used as a life planning model to enable individuals with disabilities to increase their personal self-determination and improve their own independence.

A person-centered plan is use to communicate who they are, their likes and dislikes, to express their wants and needs and what works for them.

Resources and Templates– An information and resource site for person-centered thinking, planning and practices including tools, templates and planning for older adults.
Manual for Person-Centered Planning Facilitators– Created for person-centered planning facilitators developed by the Institute on Community Integration UAP University of Minnesota. Contains topics on preparing a checklist, facilitating a plan, follow-up and challenging situations with difficult group members.
Circle of Support Workbook– Developed by the Foundation for People with Learning Disabilities. Provides an introduction to starting a circle of support group for individuals with disabilities.

Various Approaches

Essential Lifestyle Planning- A guide process designed to help the person discover what matters to them the most.

Essential Lifestyle Planning Forms- The Delaware Division of Developmental Disabilities Services provide planning form tools including personal profile, and workbook.

MAPS

Inclusion Press– Resources available  to purchase and download for free. Information on person-centered planning- PATH, MAPS and Circle of Support. The website also includes resources on inclusion.
Person-Centered Planning Relationship Map– Free download relationship map including instructions on completing the map.

PATH- Planning Alternative Tomorrows’ with Hope- uses a visual tool to detail the future

Personal Futures Planning- An ongoing process where the team replaces system-centered methods with person-centered planning.

A Brief Guide to Personal Futures Planning – A 25 page booklet which provides information on building a personal profile, using MAPS, and components of the Personal Futures Planning process.
Planning for the Future– A workbook to help students, their families and professionals to plan for life after high school. Using a person-centered approach to identify the student’s strength.

Person centered planning

Person centered planning education site

Person centered planning-supported decision-making

What To Do When Someone Has A Seizure

shutterstock_epilespy

Click here to download a printed version

Over a lifetime, 1 in 26 people will be diagnosed with epilepsy. More than 30% of people with epilepsy will experience generalized seizures. When providing first aid for seizures, try to keep calm and make sure the person having the seizure is comfortable and safe from harm.

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.
  • 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.

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.

Source: Centers for Disease Control and Prevention

Source: National Institute of Neurological Disorders and Stroke

Majority Of States Failing To Meet Obligations Under IDEA

Published by: Disability Scoop
Written by: Michelle Diament

Less than half of states are doing what they should to serve students with disabilities in compliance with federal special education law, the U.S. Department of Education says.

The agency indicated in a report out late last month that just 21 states satisfied the “meets requirements” threshold for the 2018-2019 school year in annual evaluations of their obligations under the Individuals with Disabilities Education Act for students ages 3 to 21.

Meanwhile, 27 states and Washington, D.C. were classified as “needs assistance,” many of which have qualified for the designation for two years in a row or more. Two states — New York and Vermont — received the lower designation of “needs intervention.” Click here to read the rest of the story.

Teaching Alphabets

 

35 letters and sounds learning game

Alphabet letter formation on cards

Alphabet scavenger hunts

Alphabet tracing cards

Alphabet zoom zip-line letters activity

Cookie sheet alphabet activity

Free alphabet preschool printable

Fun ways to practice alphabet letter sounds

Teaching letter recognition- what order to introduce letters

The four components of letter recognition

An Overview of Doose Syndrome

Published by: Very Well Health
Written by: Heidi Moawad, MD

Doose syndrome is a rare seizure disorder that begins during early childhood. This condition is also called myoclonic astatic epilepsy and myoclonic atonic epilepsy.

Doose syndrome is considered a type of generalized epilepsy. The seizures of Doose syndrome may be difficult to manage with medication. As children reach adolescence or adulthood, they may improve, and treatment might not be required anymore.

Epilepsy is a tendency to have recurrent seizures. Doose syndrome is an epilepsy syndrome. There are a number of different epilepsy syndromes. Epilepsy syndromes have certain characteristic features—such as the age at which the seizures begin, the type and frequency of seizures, associated symptoms, and a hereditary pattern. Click here to read the rest of the story.

Dyslexia and ADHD Comorbidly

In some cases, dyslexia and ADHD coexist. According to the Centers for Disease Control (CDC), between 50 to 60 percent of people with ADHD also have a learning disability including dyslexia which is a language-based learning disability.

According to Learning Disability Online, Dyslexia is a language-based learning disability. Dyslexia refers to a cluster of symptoms, which result in people have difficulties in specific language skills. It affects 10% of children and there are challenges with writing and interpreting spoken language;

Signs and Symptoms:
  • delays in learning the alphabet, colors and objects
  • delayed vocabulary
  • delayed speech
  • difficulty comprehending instruction
  • disorganization
  • inability to recognize printed words and letters on printed page
  • difficulty remembering the sequence of things
Attention Deficit Hyperactivity Disorder (ADHD)

Attention Deficit Hyperactivity Disorder (ADHD)is a neurological disorder characterized by a pattern of inattention and/or hyperactivity-impulsivity that disrupts functioning in both children and adults

Signs and Symptoms

The DSM-V defines ADHD as a persistent pattern of attention and or hyperactivity-impulsivity that interferes with functioning of development. Inattention symptoms include the following:

  1. often fails to give close attention to details
  2. often has difficulty sustaining attention in task or play activities
  3. often does not listen when spoken to directly
  4. Often does not follow through on instructions
  5. Often has difficulty organizing task and activities often avoids, dislikes or is reluctant to engage in task that requires sustained mental effort.

Hyperactive symptoms include:

  1. trouble paying attention
  2. restlessness
  3. excessive talking
  4. loud interaction with others
  5. frequent interventions
  6. may have a quick temper

Having both can be tricky to diagnose since they overlap in similarities. For example, a child may have a messy handwriting with spelling issues due to both disorders or when reading, may simply get tired of reading due to ADHD or may not understanding the reading material.

Intervention
  1. If the child shows signs of ADHD and dyslexia disorders, an assessment should be conducted for both disorders.
  2. The IEP should also include support and accommodations for both disorders,

ADHD and Dyslexia– International Dyslexia Association

Dyslexia and ADHD: Identifying, understanding and treating reading disorders in children– Impact ADHD

My child’s Dyslexia and ADHD: How they blended together-Understood

The Dyslexia and ADHD connection– Additude

The link between dyslexia and ADHD– Very Well Mind

Two conditions, one struggle: Teaching students with ADHD and dyslexia- CHADD

What is Inattentive ADHD?

When most people think of ADHD, hyperactivity is often what people think of. There are actually 3 subtypes of ADHD including hyperactivity, inattentiveness and a combination of both hyperactivity and inattentiveness.

There has been little research done on the inattentive type, however this is slowly changing. there are many reasons why the inattentive type is overlooked and why it is important to discuss it.  Studies show that females are more likely to have the inattentive type of ADHD. This type of ADHD is often ignored or overlooked due to its comorbidities. Females are more likely to have learning disorders such as dyscalculia (math learning difficulties) and dysgraphia (writing disorders), as well as anxiety, depression and speech and language issues.

Other challenges faced by children and adults with inattentive ADHD includes issues in executive functioning including difficulty in sequencing, staying on a task, prioritizing, and productivity.

According to DSM-V, a person must meet six of the nine symptoms listed below:

  1. fails to pay close attention to details or makes careless mistakes
  2. has difficulty sustaining attention in work or play
  3. does not listen when spoken to directly.
  4. fails to finish school work, chores or work duties
  5. has difficulties organizing activities
  6. avoids task requiring sustained mental effort
  7. loses things
  8. is easily distracted
  9. is forgetful.

Strategies in working with students with Inattentive ADHD:

  1. Allow enough time to complete work. students with Inattentive type take a longer in completing assignments and processing information
  2. Be specific and provide structure. Explain your expectations and ensure instructions are clear.
  3. Decrease distractions as much as you can
  4. Monitor for both depression and anxiety
  5. Help to build self-esteem
  6. Provide accommodations in areas of learning.
Resources

Medication response in children with predominantly inattentive type ADHD– Cincinnati Childrens’

Symptoms of Inattentive ADHD– Hill Learning Center

The other face of ADHD: Inattentive type- MDedge

What is ADD? Inattentive ADHD Explained– ADDitude

What to know about inattentive ADHD– Medical News Today

Understanding ADHD and Inattentive Type– Healthline