Skip to content

    Announcements

    Exciting News for WebMD Members!

    We've been busy behind the scenes building new message boards for you. You'll have new and easier ways to find messages, connect with others, and share your stories.

    And, this will all be available on your smartphone or other mobile device!

    What Do You Need to Do?

    The message board you're used to will be closing in the coming weeks. While many of your boards will be making the move to our new home, your posts will not. Want to keep a discussion going? Save posts you want to continue (this includes your member profile story), so that you can re-post them in the new message boards.

    Keep an eye here and on your email inbox, we'll be back in touch soon to give you all the information you need!


    Yours in health,
    WebMD Message Boards Management

    Sunflower syndrome photosensitivity epilepsy
    avatar
    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
     
    avatar
    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)
     
    avatar
    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
     
    avatar
    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
     
    avatar
    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

    Make sure no changes are made to your medications…
    This letter has been created by the Epilepsy Foundation to make explicitly sure that no substitutions are made to your prescription without ... More
    Was this Helpful?
    4 of 4 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    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