Dravet Syndrome

Dravet Syndrome (http://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome,

http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome) is one of the most difficult-to-control forms of epilepsy.  Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), it is characterized by developmental delays, frequent

An Update on Epidiolex—Medical Marijuana

GW Pharmaceuticals is in Phase 3 of testing Epidiolex, their form of cannabis (medical marijuana) especially for children with a rare form of epilepsy called Dravet syndrome.  This is the kind of epilepsy that Charlotte Figi, of “Charlotte’s Web” fame had. 

In the British study, results are positive.  There was a reduction of 39% of convulsive seizures with the treatment versus 15% with the placebo.

GW will soon request a meeting with the Food and Drug Administration to seek approval as an officially recognized drug to treat Dravet syndrome.  Currently, no treatments are approved by the FDA.

Resources 

http://www.reuters.com/article/us-gw-pharma-cannabis-idUSKCN0WG16Z

http://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome

http://time.com/3264691/medical-marijauna-epilepsy-research-charlottes-web-study/

http://soosepilepsycorner.blogspot.com/2014/09/medical-marijuana-and-reminder-about.html

Epilepsy Blog Relay: More than Seizures

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

When you think about epilepsy, you immediately think of seizures.  How to stop them, how to get rid of them.  That is the ultimate goal.  However, in that quest, there is a long journey ahead, which at times seems like an impossible dream.  If I sound like Don Quixote, the Man of La Mancha, maybe that’s what it feels like—trying to slay dragons that turn out to be windmills. Seizures are one part of the life of a person with epilepsy.  The effects of treatment on quality of life may play an equal part, especially if you are on multiple treatments. 

Epilepsy Summit Early Bird Registration Extended!

Due to popular demand, the “early bird” registration fee for the upcoming Epilepsy Summit in Manhattan Beach, California on March 28 has been extended to March 20, 2015.  If you still want to attend and haven’t registered yet, here is your chance to do so for $50/person.  Fees will go up after that.

Also, partial scholarships are available.  

For more information, you can call 800-564-0445 or 310-670-2870.

Visit: http://epilepsysummitla.org and select the ADULTS TRACK event

Register: http://epilepsysummitla.org/registration-community/

These are some of the topics that will be covered:

·         Diagnosis and Treatment Advances—Medications, Surgeries, Neuromodulation

·         Diet Therapies and Epilepsy Nutrition

·         CBD Oil (Medical Marijuana)

·         Healthcare Insurance and Financial Planning

·         Women and Epilepsy

It should be a good program!

Medical Marijuana and Reminder about Mayo Clinic Webinar

A hot topic in epilepsy research these days is in medical marijuana.  There have been anecdotal reports that marijuana has helped certain patients with severe forms of epilepsy, in particular, a childhood epilepsy called Dravet Syndrome. 

Support for medical marijuana research has been erratic because