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  • Diet Therapy,  Epilepsy

    Matthew’s Friends – Ketogenic Dietary Therapies

    March 17, 2015 / Comments Off on 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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  • Epilepsy

    Clinical Trial Begins on a New Treatment Using Cannabis for Intractable Seizures in Children

    November 20, 2013 / 5 Comments

    CANNABIDIOL (CBD), the non-psychoactive compound of cannabis There is a study underway to test the safety and efficacy of Cannabidiol (CBD), the non-psychoactive compound of cannabis. Some of the experts involved are the Angelman communities’ very own specialists Dr. Elizabeth A. Thiele and Dr. Ronald Thibert of Massachusetts General Hospital. Both Physicians are members of the Scientific Advisory Committee of the Angelman Syndrome Foundation. The study will provide a better understanding of the maximally tolerated dose and potential side effects of CBD as well as display its efficacy in two well-defined childhood epilepsy syndromes, Dravet and Lennox-Gastaut, which are very difficult to control even with medication. Angelman Today will be…

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Our story

My son, Nathan, was diagnosed with Angelman Syndrome shortly after his second birthday. He didn’t walk until he was almost three years old. The prognosis that doctors gave him was grim. He wouldn’t be able to walk, talk, or do much of anything. The doctors said that Nathan would  have epilepsy, constipation, feeding issues, acid reflux, and sleep issues. Therefore, he would require lifelong care.

Today, Nathan runs, says “Mama and Papa”! Nathan’s seizures, that started when he was 15 months old, have stopped due to dietary therapy. Also, he has no more acid reflux, no more constipation! His sleep disorder is under control without medication. He sleeps ALL NIGHT! We have beaten the odds of Angelman Syndrome. He is not lucky, his progress was not by chance but because I started him on dietary therapy very early. Monitoring his health very closely has been crucial. Very specific, and in-depth testing, allowed us to dial in his health like a fine tuned race car.

This is the hope and inspiration I want to share with the world! His genes are not his destiny.

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Angelman Today – A Global Perspective on Angelman Syndrome

Angelman Today is an online resource featuring information, research and inspiration for all things related to Angelman Syndrome. This website is created for families by families. Our articles feature information that we hope will revolutionize the current care and standard of practice for the treatment and education of those affected by AS.

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