Sturges weber syndrome
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  1. #1
    Community Host Lizbet22's Avatar
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    Default Sturges weber syndrome

    Ed has a port wine stain over his left eye and today we had a neurology appointment.
    He seems fine from the development point of view.
    Smiling, holding his head up, symmetrical movements even flipped from front to back.
    But the are still giving him a MRI scan to see if the veins are affecting the brain.
    Have to wait for the appointment and like any mum I am so nervous.
    He twitches a lot and I am worried its actually a seizure he's having now.
    I am pretty sure I am over reacting but I don't know much about it all.
    Anyone know anything about the percentage of pirt wine stains being sturges?
    I am sure he's fine but because of our history in getting him I am so scared of him being ill.
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    Posting Addict mom2robbie's Avatar
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    Hugs.

    Here is what I could find for you:

    It’s also important to note that if your child does have a facial port wine stain, it doesn’t necessarily mean he will have neurological abnormalities. In fact, only 8 percent of children with a facial port wine stain have neurological problems.

    from this website Sturges Weber Syndrome
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  3. #3
    Community Host Lizbet22's Avatar
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    Thanks Margaret.
    Xxxxx
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    Community Host Alissa_Sal's Avatar
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    Please keep us posted Liz. It sounds like your chances of Ed being just fine are great (and I think ALL newborns are twitchy!) but I know that you won't be able to help but worry until he gets a clean bill of health. (((Hugs))))
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    Posting Addict Nell4Him's Avatar
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    Geez, Liz! I've never even heard of this! I'm praying he's fine.
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    Community Host Lizbet22's Avatar
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    Thanks girls.
    It's true you never stop worrying eh? Lol
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    Mega Poster raingirl28's Avatar
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    Hugs!!

    When I first saw his stain I thought of the same thing. But everything I read is that in most cases it's a more centred stain, with a solid flat line down the centre of the face. I'm thinking he will be fine!
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  8. #8
    Community Host Lizbet22's Avatar
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    The specialist told us that there doesn't have to be a mark even in some cases.
    But the warnings are stain on upper eyelid and temple I believe.
    He doesn't seem to have a weakness on either side. He eats well too... Too well!!
    So I am hoping!!!!
    Just want this damn appointment date already!!!
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    Community Host Alissa_Sal's Avatar
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    Liz, when is your appointment?
    -Alissa, mom to Tristan (5) and Reid (the baby!)

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  10. #10
    Community Host Lizbet22's Avatar
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    Don't know yet.
    Waiting on the letter.
    The consultant said it would probably be between 3 and 6 weeks depending.
    Hopefully I'll get the letter before the end of the week.
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