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Dr. Ronald Thibert Answers Your Questions
Dr. Ronald Thibert Answers Your Questions about LGIT? Q We have one question for Dr. Thibert. our daughter started the diet in October 2012 and after about 5 weeks she was seizures free. 3 months later her neurologist decided to lower her medication but because of this her absences came back. When is the best time to start lowering the meds? She is in ketosis and we are really careful that she gets the good ratio. A That is a great question. There is no clear answer but we usually wait 6-12 months before coming off medication after the diet begins – similar to what we would do if we added a…
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LGIT Black Chocolate Truffles
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Angels in Action – Sebastian
Getting the diagnosis of Angelman Syndrome can be one of the most devastating moments for a family to go through. I still remember how confusing and terrifying it was for us. After receiving the diagnosis, we have lived through our biggest fears, our most excruciating pain, but what’s most important, we have also lived through our biggest moments of happiness. Sebastian was born 9 years ago. He was diagnosed with Angelman Syndrome (del+) shortly before turning 3. It took us three years to find out. On one hand, we were relieved to finally know, on the other, it was hard to hear that kids with AS had such a difficult prognosis.…
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Boost the Immune System
By Sybille Kraft Bellamy The human digestive tract contains about 500 types of probiotic bacteria. These “good” or “friendly” bacteria help support the growth and repopulation of the healthy gut flora in the lower gastrointestinal tract. They protect against “bad” or pathogenic bacteria and help the gut immune system to develop. Healthy bacteria also produce essential vitamins, which have an important nutritional value. To keep our children’s gut flora healthy and populated with probiotic bacteria, it is essential to give them a diet rich in prebiotic food. Prebiotics are non-digestible food ingredients, which feed the probiotic bacteria that live in our digestive tract. It is key to vary food choices…
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Healthy Fats For The Brain
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Angelman Syndrome and Sleep Disorders
Angelman syndrome children and adults have serious sleeping disorders. by Sybille Kraft Bellamy Apart from seizure problems, it is one of the most difficult aspects of the syndrome to live with. Some angels sleep only a couple of hours a night, some fall asleep easily but wake up very early and some fall asleep very late and sleep late in the morning. This can disturb the school schedule or therapy sessions and it is exhausting physically and psychologically for the parents and caretakers. The majority of angels, do not take naps and when they fall asleep it is usually late in the afternoon which disturbs the usual sleep pattern. In order to increase the chance for our angels…
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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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Chocolate Hemp Milk
Chocolate Hemp Milk Excellent alternative to dairy for those with allergies, sensitivity, and congestion. One cup of hemp seeds1/2 cup of filter water, I use green tea. 2 drops of vanilla stevia One drop of vanilla flavor Blend everything in a food processor for a couple of minutes. Filter or not in a cheesecloth. I keep the hemp seeds for later I mix them with yogurt or in his soup or with vegetables. One 1/2 tsp of organic raw cocoa unsweetened. About 1.5 carbs. One tsp of coconut oil. Mix everything together. Enjoy!
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Sweet Holiday Treat – Supporting those on the Low Glycemic Index Treatment (LGIT)
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A Father’s View – By Peter Kraft
Greetings Angleman community and all the readers of “Angelman Today”. I would like to thank Liz Sordia for stepping out and showing leadership by creating this periodical to bring us all closer and help us find ways to meet our challenges that will maximize our Angles’ potential and the opportunity to share with you the experience of the moment I and my wife learned that Max had Angelman syndrome. I am a Dad of a 12yr old Angel named Maxent. Max has two brothers, Charle, age thirteen and Tristan, age eight. It is a day I am sure all parents and families remember like yesterday, a mark of a journey…
