What is Epilepsy Seizures
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named from the Greek epileps...
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Dravets syndrome.Can anyone help please
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Our beautiful 2 and half year old daughter has just been diagnosed with a rare form on Epilepsy,Dravets Syndrome and Autism.She will always have severe epilepsy and will always have learning difficulties and may never talk.We are so devastated.Has anyone heard of this?Mariexx
Posted on 06/01/08, 02:06 pm |
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I am a Dravet parent, and a board member of the IDEA League. A Dravet parent run not-for-profit organization whose mission is to increase awareness and research of Dravet's Syndrome. Dr. Dravet herself is a member of our professional advisory board. There is a restricted forum for parents to communicate with each other. You can find the IDEA League at www.idea-league.com . 
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I am an early childhood educator who is working as a nanny for a family of a 4 year old with Dravet's. I have been with the 4 year old for a year and 2 months. He was non verbal and very delayed physically when I met him but with a daily schedule filled with speech, motor, sensory, and occupational therapies he is making tremendous progress in many areas. There is hope!! I suggest seeking a speech therapist and occupational therapist ASAP to begin working as a team to overcome delays. I also have the number for a therapist I am working with who speaks all over the East Coast and is helping me with planning theraputic activities at this time if you are interested. Sending hugs and best wishes!
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