News - Part 11

Aaliyah

The Journey to a Diagnosis Aaliyah was born on November 26, 2004.  She was diagnosed with Dravet syndrome at age 13 months.  Strangely, when she was 2 days old Michelle had a feeling that something was wrong, a feeling of impending doom.  She called Tim from the hospital and told him this, and that she […]

Vision 20/20 Task Force

ICE Epilepsy Alliance is a member of the American Epilepsy Society’s Vision 20/20 Task Force, a group of advocacy groups committed to improve the lives of patients with epilepsy. At the request of the Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and […]

Fundraiser at Bowman Gray Stadium

Winston-Salem, NC – A successful fundraising event was held at Bowman Gray Stadium this weekend.  A special thanks goes out to The Law Offices of Timothy D. Davies, participating ICE Epilepsy volunteers and sponsored driver Jasmine Hargreaves.  Congratulations also goes out to Ryan for his win on Friday night, which resulted in a special $500 donation from […]

Disclaimer

Terms of Use The ICE Epilepsy Alliance website offer complimentary information as an interactive community service at no charge to users of the World Wide Web, with the express condition that the use of this ICE Alliance website implies your acceptance of all terms and conditions. ICE Alliance reserves the right to modify these terms […]

Case Study SUDEP with Dravet

A case of SUDEP in a patient with Dravet syndrome with SCN1A mutation *Franc¸ois Le Gal, yChristian M. Korff, *Christine Monso-Hinard, zMichael T. Mund, *Michael Morris, *xAlain Malafosse, and {Thomas Schmitt-Mechelke *Genetic Medicine, University Hospitals of Geneva, Geneva, Switzerland; yPediatric Neurology, Pediatric Specialties Service, Child and Adolescent Department, University Hospitals of Geneva, Geneva, Switzerland; zInstitute […]

Encore Discussion about Dravet Syndrome

Voices & Viewpoints Discusses Dravet Syndrome
Picking up from where they left off in their last radio discussion Harriet Davies and Isaac Winter discuss Dravet Syndrome.  A severe form of epilepsy that typically manifests after the first six months of life and before the child’s first birthday.  This disease is considered a rare disease, and while we are learning more every day about epilepsy there is still so much more to learn.

Understanding Dravet Syndrome

The Dravet syndrome Spectrum Introduction Sodium channel related seizure disorders encompass a spectrum that ranges from simple febrile seizures (FS) and genetic epilepsy with febrile seizures plus (GEFS+) at the mild end to Dravet syndrome (Ds) at the severe end. There are currently 359 SCN1A disease-causing mutations reported in the literature. Recent discovery of the […]

Stiripentol and Anesthesia

Q:  My daughter is having surgery.  What type of anesthesia can be used with stiripentol?  Are there interactions between stiripentol and anesthesia?  I called Biocodex, the maker of stiripentol, and they didn’t have the answer. A:    Pharmaceutical companies don’t generally give information out on questions that have not been studied or documented with literature. Most […]

James Hopkins, PharmD

ICE the Inferno As many as 40% of children with epilepsy do not find seizure freedom with anti-epileptic drug therapy and are considered “refractory” , “intractable“, or “drug resistant” patients. An astounding 70% of patients suffering from epilepsy do not know what is causing their seizures, and the cause is determined as “idiopathic” or “cryptogenic” . The definition of “drug resistant” epilepsy as failure of adequate […]