Epilepsy
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Bye-Bye Winter Hello Summer!
Bye-Bye Winter Hello Summer! By Sybille Kraft Bellamy We are done with snowstorms, freezing rain and below zero temperatures. Now it is time to enjoy the warmer weather. Unfortunately our children with AS are not well prepared for the hot temperatures. Max, 12 years old, deletion + is extremely sensitive to hot weather and humidity. To avoid any serious health issues we have to ANTICIPATE. Children and adults with Angelman syndrome have body temperature regulation problems. They cannot adapt to rapid temperature change or extreme temperatures. In Max’s case he turns pale, his heart rate gets elevated and he becomes very lethargic. A major priority is to control his hydration.…
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Healthy Fats For The Brain
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90% Improvement in Seizure Reduction
My interview with Dr. Ron Thibert from my blog in December 2012. I recently had the opportunity to catch up with the Angelman community’s very own trusted neurologist Dr. Ron Thibert! He is the Co-Director of the Angelman Syndrome Clinic at MassGeneral Hospital for Children in Boston. His specialties include Neurology and Epilepsy Service. Many families in our community travel from many other states just to see him. He really understands how to provide the best treatment for our kids! Angelman Syndrome is so rare and when it comes to their brain and seizures, our kids need the best! They need someone who has experience to draw from when deciding the…
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Clinical Trial Begins on a New Treatment Using Cannabis for Intractable Seizures in Children
CANNABIDIOL (CBD), the non-psychoactive compound of cannabis There is a study underway to test the safety and efficacy of Cannabidiol (CBD), the non-psychoactive compound of cannabis. Some of the experts involved are the Angelman communities’ very own specialists Dr. Elizabeth A. Thiele and Dr. Ronald Thibert of Massachusetts General Hospital. Both Physicians are members of the Scientific Advisory Committee of the Angelman Syndrome Foundation. The study will provide a better understanding of the maximally tolerated dose and potential side effects of CBD as well as display its efficacy in two well-defined childhood epilepsy syndromes, Dravet and Lennox-Gastaut, which are very difficult to control even with medication. Angelman Today will be…
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November is Epilepsy Awareness Month
