Childhood Epilepsy
Men think epilepsy divine, merely because they do not understand it... We will one day understand what causes it, and then cease to call it divine. And so it is with everything in the universe - Hippocrates
image by: Epilepsy Childhood Awareness
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CBD and genetic testing provide hope for ‘intractable’ epilepsy in children
It can start with a vacant stare, what appear to be muscle twitches or a full-blown seizure. But no matter how it begins, any time a child is diagnosed with epilepsy is often a frightening time for families.
About 470,000 children are living with epilepsy in the U.S. While there are over a dozen anti-seizure medications that can be prescribed, approximately 30% of children don’t respond. These children have what medical professionals call intractable, or uncontrollable, epilepsy.
As a postdoctoral scholar in the lab of Chris Dulla at the Sackler School of Graduate Biomedical Sciences at Tufts University, I focus on researching a form of epilepsy called infantile spasms.…
Resources
Can CBD Really Do All That?
How one molecule from the cannabis plant came to be seen as a therapeutic cure-all.
This Little Girl’s Seizures Won’t Stop. Her Parents Need Your Advice.
This disorder, first described in 1958, is characterized by hard-to-control seizures caused by inflammation limited to a single side of the brain. Unlike most other causes of seizures, Rasmussen’s is a progressive disease and results, over the course of just a few years, in the destruction of the affected side of the brain. It is rare and, like so many of the diseases of the brain, still poorly understood.
This Smartwatch Can Help Detect Seizures in Kids
The Embrace is one of a growing number of wearables capable of detecting seizures and alerting caregivers.
Epilepsy’s Big Fat Miracle
There are food cures for everything from cancer and heart disease to cataracts. Doctors talk about diet as a part of basic good health all the time. But talk to them about a diet instead of drugs to stop an infection or treat a tumor and most would be visibly alarmed, and in many cases, they would have good reason to be. A decade ago most doctors held the same contempt for keto. An Atkins-like diet that worked as well — and often better — than antiepileptic drugs? Common sense suggests that’s crazy.
One Man’s Desperate Quest to Cure His Son’s Epilepsy—With Weed
After seven years we were out of options. Our last hope: an untested, unproven treatment. The only problem? It was illegal.
Absence Seizures (Petit Mal Seizures)
An absence seizure causes a loss of consciousness for 30 seconds or less. It is barely noticeable, if at all. The person simply stops moving or speaking. He or she stares straight ahead blankly, and does not respond to questions. The seizure is short and hard to notice. A person can have 50 or 100 absence seizures a day, without them being detected. When the absence seizure ends, the person goes back to his or her normal activities. He or she does not realize that anything has happened.
Battling Epilepsy, and Its Stigma
The first thing you notice about 12-year-old Nora Leitner is the dark circles under her eyes. They stand in stark contrast to the rest of her appearance; at a glance she might be any petite, pretty tween girl, with her blond ponytail, elfin frame and thousand-watt smile. But the circles tell a different story: Nora looks as if she hasn’t slept in a month.
Breakthrough for children with serious epileptic seizures
Emergency medicine doctors now have a better way to treat severe epileptic seizures in children, thanks to a New Zealand-Australian study.
Cannabinoids for pediatric epilepsy? Up in smoke or real science?
It is an exciting time with respect to the study of phytochemicals in their application to the treatment of epilepsy and in particular intractable pediatric epilepsies. It is particularly satisfying to see that the grassroots experiences of families who have children suffering from severe intractable epilepsy have been able to move the field forward so rapidly.
Did 'Pokemon' Actually Give Kids Seizures In the 90s?
Parents have always been a little concerned about their kids watching cartoons. They worry that their children watch cartoons too often, or the shows are violent. But what if a cartoon had the power to actually hurt your kid? That was the situation in December 1997, when an episode of Pokémon aired in Japan and tens of thousands of children reportedly experienced seizures—a phenomenon dubbed the "Pokémon shock."
Epilepsy Isn't As Rare As Many Might Think -- And Cases Are Increasing
Epilepsy is among the most expensive and most common chronic conditions in children and teens that has a significant negative impact on quality of life, health and academics.
Marijuana Treatment Reduces Severe Epileptic Seizures
A rigorous study validates a cannabis-derived treatment for a rare, drug-resistant childhood epilepsy.
Treating Epileptic Seizures in Kids by the Clock
"Why give the medication in the morning if the patient isn't having seizures then?" he says. "If they are having more seizures at night, give it to them at night." Although targeted dosing isn't new, "it's slowly growing" as a common treatment, he says. There has also been very little research on its effectiveness.
Why Some Doctors Purposely Misdiagnose Patients
Hundreds of people say a Michigan doctor falsely diagnosed them with epilepsy. He wouldn’t be the first to lie to patients about how sick they are.
CBD and genetic testing provide hope for ‘intractable’ epilepsy in children
Recently, promising advances have been made in the field of epilepsy treatment with the development of cannabidiol-derived drugs and the rise of genetic testing. I believe these advances are paving the way to provide treatment options for children with intractable epilepsy.
CURE
Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.
Intractable Childhood Epilepsy Alliance
The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and funding of research that will lead to a cure for intractable childhood epilepsies.
Living with LGS
Lennox-Gastaut syndrome (LGS) is not a well-known disorder. Although some people may be familiar with epilepsy or seizures in general, most haven’t heard of LGS. LivingWithLGS.com is here to help you get an understanding of LGS, to provide information regarding various treatment options, and to make valuable resources available.
Purple Day
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.
Young Epilepsy
Young Epilepsy is a national charity with over 100 years' experience as a centre of expertise for all young people with epilepsy and other neurological conditions.
Dravet Syndrome Foundation
Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.
Epilepsia
Epilepsia is the leading, most authoritative source for current clinical and research results on all aspects of epilepsy. As the journal of the International League Against Epilepsy, subscribers every month will review scientific evidence and clinical methodology...
Epilepsy Action
Epilepsy Action is a community of people committed to a better life for everyone affected by epilepsy. We want high quality, accessible epilepsy healthcare services, so that people with epilepsy have the support they need to manage their condition.
Epilepsy Society
Our vision is a full life for everyone affected by epilepsy. We want everyone affected by epilepsy to have the best opportunity for a full life — as free from seizures as possible. We set out to make a difference to every person affected by epilepsy whatever their background, however seriously it affects them, and whether they have the condition themselves or are close to someone with epilepsy.
Epilepsy Sucks UK
Welcome To Epilepsy Sucks UK. Formed by two mothers who both have children diagnosed with epilepsy and share the same view: It sucks harder than a Dyson in a black hole! Sallieann Gould & Vicki Evans, have over 20 years experience of life with epilepsy. Distinguishing seizure types, treatment options, navigating the education and health care system, cutting through the jargon, keeping our ears to the ground to find the latest information and solutions ,sharing safety tips and spreading the word that Epilepsy Sucks.
Epilepsy Warriors
Sudden Unexplained Death in Epilepsy [SUDEP] accounts for 10% of all Epilepsy-related deaths; 85% of these fatalities occur between the ages of 20 -50. The Epilepsy Warriors Foundation feels it is important to reach out to as many people and companies as possible to help raise awareness for a devastating disease one that has claimed so many of our children and young people. We hope that you will join us in our efforts to improve the quality of life for those afflicted with and by this complicated disorder.
Epilepsy.Foundation
Comprehensive site for both patients and professionals.
International Bureau for Epilepsy
The International Bureau for Epilepsy (IBE) was established in 1961 as an organisation of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. The IBE addresses such social problems as education, employment, insurance, driving licence restrictions and public awareness. The Bureau also works in close liaison with the International League against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy.
International League Against Epilepsy
The International League Against Epilepsy (ILAE) was founded in 1909 and is an organisation of more than 100 national chapters. The goals of the ILAE are: -To advance and disseminate knowledge about epilepsy -To promote research, education and training -To improve services and care for patients, especially by prevention, diagnosis and treatment
Living Well With Epilepsy
Living Well With Epilepsy is a leading epilepsy blog that covers the full spectrum of issues faced by people living with all types of seizure disorders. We aim to inspire people living with epilepsy through a unique mix of news, personal stories, commentary, interviews, guest posts, and forums.
National Association of Epilepsy Centers
The primary objectives of NAEC are to connect people with epilepsy to specialized epilepsy care, and to support epileptologists and administrators in the operation of their epilepsy centers. Founded in 1987 by physician leaders committed to setting a national agenda for quality epilepsy care, the NAEC educates public and private policymakers, and regulators about appropriate patient care standards, reimbursement and medical services policies. NAEC works in conjunction with existing scientific and charitable epilepsy organizations.
American Epilepsy Society
The American Epilepsy Society is one of the oldest neurological professional organizations in this country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy.
Calvin's Story
Epilepsy and beyond: A mother's journal of the anguish, grief, joy and triumph shared with her son.
Canadian Epilepsy Alliance
The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families, through support services, information, advocacy, and public awareness.
Epilepsy Action Australia
Beginning in 1952 as a local association, Epilepsy Action Australia has developed into the largest provider of specialist epilepsy services in the community for people with epilepsy and other seizure disorders, their carers, families and the broader community.
Epilepsy Australia
Epilepsy Australia is the national coalition of Australian Epilepsy Associations raising our voices as one to advance the cause of all Australians living with epilepsy. Actively delivering counseling, support and information to all who access our services, Epilepsy Australia is committed to raising awareness and understanding of the very real issues faced by those living with epilepsy.
Epilepsy Canada
Epilepsy Canada is a non-profit organization whose 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 initiatives that build understanding and acceptance of epilepsy. Epilepsy Canada is governed by a national board with national representation. Partner associations of Epilepsy Canada provide direct services to those with epilepsy and their families.
Epilepsy New Zealand
Established since 1956 Epilepsy New Zealand has grown from one Branch to 15. The first ‘Epilepsy Week’ was held in 1971 and in 1977 the Association launched its emphasis on field-work. Epilepsy New Zealand continues to develop it services to meet the demands of its clients and members. As a result, individuals, friends and family can feel more confident that they will not be considered disadvantaged by having epilepsy.
Haley is My Hero
This site is dedicated to our little hero, Haley. She is a brave little girl who suffers from a rare seizure disorder called Dravet syndrome, or Severe Myoclonic Epilepsy of Infancy (SMEI). Haley has been battling this disorder since whe was five months old. There is no cure for Dravet syndrome and Haley will never out-grow her seizures. Despite all of the hardships in her life, Haley remains a happy, loving, smiling little girl who has taught us much about what is really important in life.
Singapore Epilepsy Foundation
Singapore Epilepsy Foundation is the Singapore Chapter of the International Bureau for Epilepsy. Our main objective is to improve the quality of life of people with epilepsy. SEF website will provide you with relevant information regarding epilepsy and seeks to keep people with epilepsy updated with the latest developments in the field.
The Art of Living with Epilepsy
This blog is aimed at throwing the spot light on everyday life with a diagnosis of Epilepsy purely from a patients point of view. A diary open to anyone who wishes to read it. Mixed in every now and again with facts, figures and ways to help I have sourced. I am a firm believer that it really is the little things that matter in life. So while a diagnosis of Epilepsy is the bigger picture, it is how it effects the little things in daily life that may otherwise be overlooked that becomes important. Hopefully a little advice on how to deal with these smaller aspects that may have to be altered will go along way. For just one person to read a little bit of an honest blog and realise that inevitably life will change but it's how you deal with these changes that becomes vital, is my little wish.
The Charlie Foundation
The Charlie Foundation to Help Cure Pediatric Epilepsy was founded in 1994 after twenty month old Charlie Abrahams, having endured multiple daily seizures, and failed every available anti-convulsant drug and one brain surgery, was cured of his epilepsy by the ketogenic diet at Johns Hopkins Hospital. The diet was undertaken despite resistance from the five pediatric neurologists he had seen. When Charlie's parents realized that Charlie was but one of hundreds of thousands of children whose families were either not being informed, or being misinformed about dietary therapy, they started The Charlie Foundation...
Bright Tots
Definition and explanation of seizure disorder and varoius types of seizures in children.
Dr Greene.com
Information on epilepsy, seizures, and resources.
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