37 Helpful Epilepsy Resources

Posted on November 12, 2020 by specialneedsresourcetrainingblog

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

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.

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.

Epilepsy Research UK

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

Antipsychotics and Autism: Weighing the Benefits, Eyeing the Risks

Posted on May 6, 2019 by specialneedsresourcetrainingblog

Source: Interactive Autism Network
Written By: Marina Sarris

Children and adults with autism are sometimes prescribed an array of psychiatric drugs for hyperactivity, poor attention, or challenging behaviors. One type of medication, called antipsychotics, has become something of a “go-to” treatment for the most severe behaviors. According to the latest studies, one in five or six youth with autism has taken them,^1,2 along with 43 percent of adults with autism, on average.³ Antipsychotics are the most frequently used type of psychiatric drug in autism.³

That may be because two antipsychotics are the only drugs approved specifically for certain behaviors in children and teens with autism.¹ The U.S. Food and Drug Administration gave its stamp of approval to aripiprazole (brand name Abilify) and risperidone (brand name Risperdal) for “irritability” in autism – namely self-injury and aggression – almost a decade ago. More recently, the U.S. Agency for Healthcare Research and Quality weighed the scientific evidence on those medications. It found significant benefits and also “harms,” or bad side effects.⁵The drugs reduce challenging and repetitive behaviors when compared to no treatment. They also are associated with significant weight gain, sedation, tremors and movement disorders, it noted. Click here to read the rest of the story

What You Need To Know About Dravet Syndrome

Posted on August 13, 2016 by specialneedsresourcetrainingblog

Epilepsy is the 4th most common neurological disorder in the United States. With children, around 400,000 have epilepsy and most are able to control their seizures and lead normal lives. Dravet Syndrome is a rare form, of epilepsy found in children. Symptoms include, developmental delays, sleeping conditions, and chronic infections. Here are 20 facts you shoud know about Davet Syndrome.

click here for a printed copy

Charlotte Dravet first described severe myoclonic epilepsy of infancy in France, 1978.
The name was later changed in 1989.
It is also called Severe Myoclonic Epilepsy of Infancy (SMEI)
It is a rare genetic disorder affecting 1 in every 20,000-40,000 children
It appears during the first year of life.
Developmental disabilities and abnormal EEG’s are often not evident until the second of third year of life.
Seizures are often fever-related.
It is rare to develop beyond the age of 5.
Children often experience poor development of language and motor skills
Is caused by defects in a gene in 79% of cases.
Affects 2-5% of children in North America
It is induced by prolonged exposure to warm weather
It is associated with sleep disorder including insomnia
Seizures are frequently resistant to treatment
There is a higher risk of Sudden Unexplained Death in Epilepsy (SUDEP) (15-20%)
The onset of signs and symptoms is around 6 months old
Children diagnosed with Dravet Syndrome have a 85% chance of survival.
Development is typically normal.
Episodes may be frequent and prolonged
Certain seizure medications are likely to worsen the seizures such as Dilantin, Cerebyx and Tegretol.

Resources

Dravet Syndrome Foundation
P.O. Box 16536
West Haven, CT
Tel. 203-392-1950

Dravet Syndrome UK
P.O. Box 756
Chesterfield
5439EB
Tel. 07874 866937

Epilepsy Foundation- Provides online resources on information about epilepsy and seizures, locating assistance, advocacy and public awareness.

ICE Epilepsy Alliance– Provides resources on refractory patients (anti-epileptic drug therapy which is ineffective). Site includes information on advocacy, childhood epilepsy, and Dravet syndrome.

NINDS Dravet Syndrome Information Page– Medical information page on Dravet syndrome, diagnosis, treatment, research and organizations.

WebMD– Medical website providing information on diagnosis, signs and symptoms, and treatment.

Benign Roladric Epilepsy

Posted on February 9, 2016 by specialneedsresourcetrainingblog

Benign Rolandic Epilepsy

What is Benign Rolandic Epilepsy?

Benign Rolandic Epilepsy is a type of seizure that affects primary children. It is referred to as “Benign” since most children grow out of it during puberty and “Rolandic” describes the part of the brain where seizures begin.

Other know names:

benign focal epilepsy
benign childhood epilepsy with centrotemporal spikes (BCECETS)
benign rolandic epilepsy of childhood (BREC)
benign epilepsy with centro-temporal spikes (BECTS)

How Common is Benign Rolandic Epilepsy?

Benign Rolandic Epilepsy (BRE) is considered one of the most common types of epilepsy children will experience. It generally begins between the ages of 3 and 13 and peaks around the age of 7-8 and will stop around the ages of 14-18 (puberty). Children usually do well with this type of seizure although some may experience learning disability including reading, language and drawing.

Symptoms

A feeling of tingling on one side of the mouth which involves the tongue, lips, gums and inner side of cheek.
Generally begins when the child is sleeping or wakes up in the morning characterized by occurring in clusters and long intervals with no seizure activity.
twitching movements on one side of the face.
May make gurgling sounds.
Drooling and the inability to speak.
Day time seizures may be infrequent and typically last less than 2 minutes.
May spread from the rolandric area to the rest of the brain which becomes a tonic-clonic seizures.

Diagnosis

Diagnosis are done through an accurate history of the seizures and an electroencephalogram (EEG) test, which picks up seizure activity.

Treatment

In most cases, children may not take any medication since the seizures end around puberty. May be treated with anti-epileptic drugs including:

Carbamazepine
Levetiracetam
Oxcarbazepine

How professionals can help

Recognize the signs of seizures
Teachers should be aware that a child may often feel tired and sleepy afterwards for hours
There may be learning difficulties and behavior problems

Resources