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Thread: Hoping for diagnosis

  1. #1
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    Default Hoping for diagnosis

    My DD8, Ciara, has partial unilateral paralysis of cranial nerves 7,9,10 and 12. She also cannot move her eyes laterally. Her pediatric opthomologist feels she has möbius as do a few of her neuros. Pressure has finally been put on genetics so that they will see us again in late December. I have no idea what they'll say. Ant specific questions I should ask? She has multiple other issues that I'm willing to discuss if any if you want to know. I'll take any input.

  2. #2

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    Quote Originally Posted by alizesmom View Post
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    My DD8, Ciara, has partial unilateral paralysis of cranial nerves 7,9,10 and 12. She also cannot move her eyes laterally. Her pediatric opthomologist feels she has möbius as do a few of her neuros. Pressure has finally been put on genetics so that they will see us again in late December. I have no idea what they'll say. Ant specific questions I should ask? She has multiple other issues that I'm willing to discuss if any if you want to know. I'll take any input.

    She would probably get a Moebius syndrome diagnosis with both the 6th and 7th nerve involvement. If she has any orthopedic manifestations (hand abnormalities, club foot, etc.) or sensory issues/ASD that would lead even more to it. But since it's a clinical diagnosis and there is no test for it, it's all about clinician perceptions.

    For more information, check out the Moebius Syndrome Foundation on Facebook, and see if you will be able to attend the next conference next July in Washington DC. It's a great opportunity to meet other families and some of the best doctors and researchers in the field. The Moebius Friends 2 and Moebius Moms groups are also great for connecting and advice.

    If you have any other questions, feel free to contact me.

    Hope this helps!
    Last edited by power2change; 11-09-2013 at 05:25 PM.

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