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Emergency Preparedness For Children With Special Needs That Follow A Therapeutic Diet
By Sybille Kraft Bellamy When Hurricane Sandy hit the East Coast in 2012 we lost electricity for 5 days and were under a curfew for a week with limited access to our regular food sources of supply. My son Max celebrated his 11 birthday with candles, a lot of candles! Candles were the main source of light in our kitchen. We used our generator for most of the day to recharge our laptop, phone, fridge, and to keep our furnace going. We had known for days that our area would be in the storm’s path. We were not particularly concerned by the flooding because we are located on a hill,…
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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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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.…
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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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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…
