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Sunflower syndrome photosensitivity epilepsy
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jennandkc posted:
My daughter is 8 years old and for the last 4 years my husband and I
have been tring to find out what was wrong with our daughter. Well we finally did! She has a very rare form of epilepsy called sunflower syndrome. We have never found a docter that knows anything about this.
We are desperately tring to find a doctor. Can anyone help? Does anyone know of a doctor that is familiar with this disorder?
Reply
 
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hula_dancer73 responded:
google it. I do not think anyone know about it on here. Never even heard about it here, butthere are about 40 different types of szs and it sounds like you founf one ofthem.

Nancy (hula_dancer)
 
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An_252764 responded:
Hi, My daughter is nine and does the same thing. I'd love to talk to you and find out what you've tried and what you're doing with this. Thank you! Tiffany Marty
 
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dancer86442 replied to An_252764's response:
Hello Tiffany,

Do you have an account w/ Face Book? There is a group there, t hat discusses Sunflower Syndrome. I see Jenn never replied to this. I do know from what I have Learned from the Creator of the Face Book page, that Polarized Sunglasses Helped! I don't recall if her daughter or others' are on meds. If you don't have an Account w/ Face Book, let me know & I will post any/all of your questions there.

Love Candi
 
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dancer86442 replied to dancer86442's response:
Also, Use our 'Search This Community' tool next to Post Now. You will note other discussions about Sunflower syndrome. Hugs!


Helpful Tips

Seizure First Aid
http://www.epilepsyfoundation.org/aboutepilepsy/firstaid/index.cfm More
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FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Epilepsy Center