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#81
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| joan* My new project: Every November is epilepsy awareness month. I'm begging everyone to contact their schools now to see what they can do to "celebrate" a day that month. Epilepsy Foundation will help with information. If we all start educating at the school level, we will educate a lot of people quickly and hopefully compassionately. I do NOT want some uninformed, well intentioned person, sticking a spoon in my kids mouth, or rolling them on their belly or back during a seizure. I think all us Moms, Dads, Caregivers : ) MUST push the schools to start getting others, uninflected, educated. Its for OUR children's benefit. It is also their right* If we start now we will certainly be really and able to help in November. If anyone needs or wants help getting started, Let me know and we'll do it together. Just start by contacting your school and asking them if they are open to having an E awareness day? Or program? Or what they can suggest. Please help educate others. Joan* |
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#82
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| The NBC lady doctors name is Dr. Nancy Snyderman. |
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#83
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| Thank you. Now, does anyone have a way to get her contact information, whether it be her email address or phone number. This woman is basically saying that my parents should be blamed because they never watched me in the shower, and should be held negligent. ARRRGGHH!! If this woman has access to these shows, and she is an expert, why doesn't she take the time and help end some of these myths. Please, if someone could either post her information, or send it to me via PM, that would be great. I am so agitated by all of this right now. Thank you. |
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#84
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| I'll try to find it this afternoon, but during the Christmas holidays there was over the public tv network a public awareness clip about Epilepsy. It well done and targeted children. I am sure it comes from the epilepsy fundation in Canada it could be passed along south of the border to help you out. I'll followup on it later on. |
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#85
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| I just posted a good clip with Nancy Snyderman. I titled the thread: Raising Awareness
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#86
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I am sorry, but where is the clip? |
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#87
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__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. Would you like to help support this forum? We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners. |
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#88
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#89
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| There's even an article on Medscape about Jett Travolta, stating it's unlikly his seizures were caused by Kawasaki syndrome but presuming a relation between autism and seizires. http://www.medscape.com/viewarticle/...26&uac=44414DT I'll post a copy beacause you have to log in on Medscape to read the article. Quote :
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. |
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#90
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| I had wondered if he had Epilepsy when it said he had a history of seizures. But we may never know. I know alot of people think he had Autism, but that John and Kelly denied he did. I do wonder if they even tried to test him for Epilepsy. |
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#91
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| Of course he had Epilepsy... that is only a label for two or more unprovoked seizures. Perhaps they did not know what caused the seizures... that would be more understandable.
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#92
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| Jett Travolta passed away and was marked as "Seizure Disorder". Because he is a resident of Florida, and Florida is "territorial" in regards to the death of such; once it has been announced, the curtains are closed. I lock this as they have here in Florida out of respect for the deceased. Much condolences to the family. |
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