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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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WHAT IS A MAPS DOCTOR AND WHY SHOULD I HAVE ONE?
MAPS – Medical Academy of Pediatric Special Needs Interview with Dr. David Berger Wholistic Pediatrics and MAPS Physician The Medical Academy of Pediatric Special Needs is a group of professionals who offer a Comprehensive Education and Fellowship to Medical Professionals for the care of children with Autism Spectrum Disorders and related Chronic Complex Conditions. Their mission is to prepare medical professionals to deliver the best possible care to children with ASD and other special needs conditions. Under the guidance of Daniel Rossignol MD, FAAFP, this uniquely designed scientific evidence-based course of study is designed by clinicians, for clinicians. MAPS Physicians are at the forefront of helping families by thoroughly assessing…
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Clinical Trial of LGIT Proves Effective for Reducing Seizures by 80-90%
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 – 90% Dr. Thibert and Dr. Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in reducing seizures in individuals with Angelman Syndrome. In July 2012 the results were in and published in Epilepsia and in the Angelman Syndrome Foundation newsletter. Epilepsia link: PubMed link: http://www.ncbi.nlm.nih.gov/pubmed/22779920 Read my interview with Dr. Thibert on my blog www.MeetTheFamiliesofAS.blogspot.com
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Going Back to School and Maintaining LGIT
Going Back to School and Maintaining LGIT By Sybille Kraft Bellamy Going back to school for LGIT students can be easy to prepare. Personally, I consider Max as being allergic to sugar! The same way he wears a red wristband in the Hospital Warning of Dextrose/glucose allergies, his teacher, aides and therapists are informed about his ketogenic diet. It is one of the main items on his IEP. We have a controlled protocol with the staff that lists the food allowed and the amount authorized. I prepare Max’s lunch daily and if he did not eat the way he should for his breakfast I write a note in his communication book…
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Angels in Action – Billy’s Story
Angels in Action Q&A with Angel Mama Linda Rafert Yoakam Q. Tell us about your favorite outings? Billy loves to be entertained. And he’s not picky. He enjoys movies, sporting events like minor league baseball or indoor football, local community plays or Broadway-caliber plays, musicals, concerts. Those are some of our favorite outings. Because he enjoys outings so much, we’ve resorted to season tickets to events. Swimming and water activities are not the draw they once were in his childhood. Billy understands more than he’s given credit for…here he is at the Boston Public Library making sure I don’t miss the beautiful paintings on the walls being described by our…
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Angels in Action – Carter’s Story
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy: By Nealie Prewitt of Missouri Once Carter was diagnosed with Angelman syndrome; It didn’t take long for us to learn what life with an “Angel” meant. Sleep deprivation, behaviors, therapies, colds that always got worse, and social obstacles were some of the biggest challenges for us and Carter. There wasn’t a day that went by that I did not think, “there has to be something, some therapy, some approach, anything that I could do to make his life- our lives not so enduring. Sleep seemed to be the worst. I noticed that Carter always seemed congested…
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Gluten Free Living
Gluten Free Living By Isabel Orellana Over the years, gluten has become a much debated substance. But what is the fuss all about? It is estimated that 5-10 percent of the US population is sensitive to gluten. This would mean that 5-10% of our angels are sensitive. However, the number is probably much higher. When our angel first got diagnosed at 11 months we had never given him gluten because our pediatrician had advised us not to start with wheat before age 1. After the diagnosis and investigating about neurological differences and food related issues, it became clear to us that our angel would continue his gluten free journey for…
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Angels in Action – Krista’s story
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with Angelman Syndrome. Written by the families, we join in celebrating the abilities no matter how big or small. We believe it is important to inspire everyone with these real stories of our endearingly termed ‘Angels in Action’. Possibilities abound when we have a vision! By Karen VanPuyenbroeck of Illinois Angel Mom to Krista 10 years old, AS UPD When I was asked by our Editor In Chief, Lizzie Sordia, to write a piece about Krista’s abilities for this section; I asked myself, what were my…
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LGIT Testimonial – Anna’s story
LGIT Testimonial – Anna had a terrible start. She could not drink and because of this she was hospitalized 3 weeks after her birth. They soon discovered she had epilepsy and here in The Netherlands I understood, almost all babies with epilepsy get Phenobarbital. Because I was not satisfied with the care Anna received we decided to move to another hospital. So almost 6 months later, the new neurologist advised us to stop with Phenobarbital and start with Keppra. And it was a good choice. When Anna was 1 year old she finally got diagnosed: Angelman Syndrome. With Keppra, we succeeded to keep her seizure free for almost 2 years.…
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The Power of Cooking
The Power of Cooking Angelman syndrome, ketogenic diets and LGIT By Sybille Kraft Bellamy One of the best ways to naturally help our angels is by giving them a nutritious healthy diet. Our angels are fragile and very sensitive to their environment. Little things, minor changes can trigger dramatic consequences. Each child is unique, each parent is special. We have to rediscover the power of food. Therapeutic diets like ketogenic diets have been used for years to help control epilepsy. Today, the LGIT (Low Glycemic Index Treatment) is one of the easiest diets to give to our angels. It is one of the weapons we can use to protect…
