-
Letter from the Editor – 2013 Holiday Edition
The Holiday Season is upon us ‘Tis the season for giving thanks and celebrating with friends and family. Time for office parties, dinner parties, and time to take-out the good-dishes parties. I will begin by thanking everyone who has helped create and support Angelman Today! Thanks to all of the readers who have reached out and expressed your appreciation for having such a wonderful new resource. I know that it is from the bottom of our hearts that we work so hard to help bring the global community together and share our experiences. As parents, we work on Angelman Today in between caring for our Angels – which you know…
-
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
-
Angels in Action – Eddyto’s Story
Eddyto was born a healthy baby at 37 weeks. He has a sister aged 4 and lives in Guatemala, Latin America. Eddyto was diagnosed with Angelman Syndrome, del +, Class II, at 11 months of age. We have been working hard ever since with nutritional therapy, supplements and the NACD program. Eddyto has come a long way and we are doing everything we can to support him to achieve his maximum potential in health and development. In addition to having Angelman Syndrome, Eddyto took another hard blow at 7 months of age. His third set of influenza, DTP and hepatitis B vaccines was too much for his body to handle…
-
Welcome to Holland by Emily Perl Kingsley
Welcome To Holland by Emily Perl Kingsley ©1987 by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author. I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day…
-
Angel Karly Foundation – September article
www.angelkarly.org
-
Angel Lina’s Testimony – LGIT
Lina’s Mom shares with us the success on LGIT and GFCF diet. Lina and her family are from Germany this article features both languages. Our angel Lina (deletion class 2) will soon turn 4. For her first 3 years of life, she was able to develop well without epilepsy. Right around her third birthday, epilepsy started with first febrile seizures. We started the LGIT diet in November of 2012 as well as treatment with Frisium due to many myoclonic seizures and developmental stagnation. In addition, in April we went gluten free and reduced casein intakes significantly. Ever since, Lina is doing well and of her myoclonic seizures not much is noticeable.…
-
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…
-
Making Sense of it all – By Ed Weeber, PhD.
Making Sense of it all By Edwin J. Weeber, Ph.D., Professor, Department of Molecular Pharmacology and Physiology, Chief Scientific Officer, USF Health Byrd Alzheimer’s Institute Director, Neurobiology of Learning and Memory Laboratory, University of South Florida Health’s Morsani College of MedicineMany of you reading this magazine are more immersed in medical science and scientific discovery then most of the population. With a focused eye on the latest work being performed in the field of Angelman syndrome, there are reports, papers, talks and posts that seem to be in constant conflict. It’s important for you all to know that this is actually a good thing! Rarely are there “eureka” (I’ve found it) moments in…
-
Understanding Genetic Classes of Angelman Syndrome – By Dr. Charles Williams
Understanding Genetic Classes of Angelman Syndrome Dr. Charles Williams, Professor of Pediatrics and Genetics, Division of Genetics and Metabolism, Department of Pediatrics, University of Florida Conducting blood testing to diagnose Angelman syndrome (AS) can be a complicated matter. Here I summarize the different genetic causes of AS and provide general guidelines about how to use genetic tests to confirm the diagnosis of AS. First, let us look at the genetic mechanisms that cause AS: A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown. The P indicates the maternally-derived chromosome and the M indicates the maternally-derived one. The shaded chromosomes have a…
-
Marital Stress, part 2
Marital Stress (part 2 from July edition) By Marc Bissonnette “It is both the words you choose, as well as your tone that makes the difference.” “Look, I work all day, I bring in all the money, I pay for everything in the home, as well as your vacations – I don’t think it’s unfair that I ask you to pull your own weight” Guys, (or gals, if the roles are reversed) if you’re thinking that my response was perfectly reasonable – Bang your head against the wall, because it’s about the worst thing you can say. How do I know this? Because I had a very, very well…
