Epilepsy
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November is Epilepsy Awareness Month
“Genes are not our destiny, they are contantly being altered”. Dominic D’Agostino, PHD Watching our sweet children suffer from epilepsy is heartbreaking. Every second feels like an eternity. When an Angel is lost due to SUDEP (Sudden Unexpedect Death in Epilepsy) it is felt by the entire community. Epilepsy affects the majority of individuals with Angelman Syndrome but it does NOT mean that nothing can be done. We are going to share with you stories from several AS families that have been able to STOP seizures or significantly reduce them with diet therapy. Did you know that there was a small clinical study done in 2012 on the most flexible…
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Keto Power Comic Book Coming Soon!
Very soon you will be able to purchase the first ever comic book pamphlet about the Ketogenic diet. Learn how to use Keto Power to help fight epilepsy. Written by Sybille Krafty Bellamy, Mom to Maxent. Maxent was born with Angelman Syndrome, he was medically fragile from the beginning of his life. Sybille was determined to learn how to spend time and money in the kitchen and not in the hospitals. We will keep you posted and let you know as soon as it is available.
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Books about Angelman Syndrome
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Meet Josh – Seizure free with CBD
Josh is 2 years old, he was diagnosed with Angelman Syndrome and having seizures every week. Video of his journey coming soon to our YouTube Channel! Thanks to CBD Oil (Cannabidiol) he has been seizure-free for OVER 1 YEAR!
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This Is Max
Frequently asked questions about Low Glycemic Index Treatment (LGIT) Edited by Heidi H. Pfeifer, RD, LDN, Clinical Dietitian at Massachusetts General Hospital 1. What is the Low Glycemic Index Treatment (LGIT)? The LGIT is a special high-fat diet similar to the ketogenic diet that is used for difficult-to-treat seizures. It focuses on both the type of carbohydrate, low glycemic index, as well as the amount of carbohydrate-based on portion sizes and household measurements. The glycemic index (GI) is a measure of the effect of carbohydrates on blood sugar levels. When carbohydrates are digested, they release glucose into the bloodstream. Carbohydrates that digest rapidly have a high GI. Carbohydrates that are…
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The Low Glycemic Index Treatment for Angelman Syndrome and Prader-Willi Syndrome
By Sybille Kraft BellamyMother of Maxent, AS 14 years old. Thirteen years ago in July 2003 Maxent was diagnosed with Angelman syndrome (AS), he was 18 months old. Today he is a handsome teenager in excellent physical condition with no medical issues. Nevertheless, this was not always the case. From infancy to his toddler age he was chronically sick and he spent more time in the hospital than at home. Very quickly I had the certitude that diet should be the best accessible and fastest way to help him. Following my own observation and encouraged by Max’s pediatrician (and later by our neurologist), I started paying attention to his diet…
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Matthew’s Friends – Ketogenic Dietary Therapies
Intractable (Drug Resistant) Epilepsy; 1 in 104 people are affected with epilepsy in the UK** and over 50 million worldwide. It is one of the most common serious neurological conditions with approximately 30 different epilepsy syndromes and over 38 different types of seizures. The majority of cases of epilepsy can be treated successfully with modern anti-epileptic drugs (AED’s) used either as single agents or in combination. However, approximately 30% of cases are classed as having drug-resistant or intractable epilepsy, where seizures persist despite the appropriate use of two or more AED’s and the possibility of achieving seizure freedom with additional medication is extremely low. Ketogenic Dietary Therapies: The Ketogenic Diet…
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FIND – Further Inform Neurogenetic Disorders
The Cerebra Centre for Neurodevelopmental Disorders is led by Professor Chris Oliver at the University of Birmingham. The aim of the Centre is to conduct high quality research with children and adults with neurodevelopmental disorders. The Centre focuses on researching behaviour, cognition and emotions. The Cerebra Centre team has developed a novel online resource to improve the exchange of knowledge about rare genetic syndromes. The purpose of this website is to summarise research studies using a range of interactive and engaging formats, for example, parent stories, professional talking heads, bite-sized written information and an interactive database. The website is called FIND, which stands for ‘Further Inform Neurogenetic Disorders’ and has…
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The Fourth International Symposium For Diet Therapies
Matthew’s Friend’s Symposium – Liverpool UK 2014 By Sybille Kraft Bellamy A couple of weeks ago I had the opportunity to attend one of my favorite scientific symposiums: The 4th Global Symposium Ketogenic Dietary therapies for Epilepsy and other Neurological disorders. Over 27 countries were present sending the most eminent neurologists, researchers scientists in epilepsy, cancer, molecular biology and nutrition. They presented their clinical trials and laboratory results in the field of the Ketogenic diet. Angelman syndrome was represented by Dr. Elizabeth Thiele the neurologist from Mass General hospital in Boston who received the John Freeman award from Nancy Abraham (Co-founder of The Charlie Foundation) for her outstanding work in the…
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Dr. Anna Larson: A Life-Changing Encounter Leads To A Lifetime’s Inspiration
We’ve all heard stories about unexpected encounters that change people’s lives in profound ways. While not all of us have experienced that kind of event, Dr. Anna Larson is one who has. It came when she was applying to medical schools. A friend mentioned that a couple she knew was seeking a caregiver for their son, Jake Pritzker, a young adult with Angelman syndrome (AS) living in St. Paul, Minnesota, and Anna accepted the task. Once she started working with Jake, it helped focus her future plans on specializing in pediatric neurology and in particular, epilepsy and AS. It is a path she is still pursuing, though her accomplishments are…
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Eva’s Journey With Seizures And What Her Mom Is Doing About It
By Claire Lerman On the 28th June 2013 our beautiful little 16mth old Eva was diagnosed with Angelman Syndrome. Just 4 months after her diagnosis Eva started with epilepsy and has been in & out of hospital numerous times. All the medications we were given completely failed to control Eva’s seizures. We had read about something called a Ketogenic diet & we were desperate for Eva to be able to try this as a form of medication. After battling to get consent to go onto the diet we eventually had our neurologist’s consent. Eva started the diet on the 4th March 2014 at which point her seizures had ramped up…
