BHS- seizures

Discussion in 'Special Needs Support' started by 17thy, Nov 19, 2011.

  1. 17thy

    17thy <3

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    Not sure if this is the right place for this but...

    My life is becoming consumed with my daughters BHS. As background, at around 9 months she started having these random "tantrums", at least I had thought they were tantrums. She would be mildly upset, usually just tired or something, and I'd set her down to go get a toy, or get her sippy or something and she'd scream extremely loud one time and fall over and turn blue, her eyes would roll back in her head, and she was stiff not breathing or making any noise, so I would pick her up and blow in her face and she would go limp in my arms and then start breathing again and crying.

    Well we called the doctor about this and she diagnosed it as a severe form of BHS. And since then (she's a little over a year now) her "episodes" have been becoming more frequent and more severe. None of the doctors seem to know much of anything about it. One doctor said she'd grow out of it by 5-8 years old, one was very concerned that she was passing out every time.

    Most recently two nights ago it was the worst I've seen so far, she was upset for half a second before turning blue, falling over, eyes rolling back, stiffening. Stopped breathing several times for seconds at a time, her arms and legs were moving all over, like her right arm and hand were twisted backward and pushing into her face, and then she just laid there with her eyes open at the ceiling just staring there for about 10 seconds, before breathing normally, then coming to and looking around all confused and crying. :( :cry: It was scary.

    They've done an EKG on her which came back normal, but no other testing or anything. They just seem to be getting so bad. Some days I just can't set her down or she will pass out and start seizuring within 30 seconds. It's so stressful. It's like, she goes from 0 to 60 in such a short amount of time, once she gets upset it has to be remedied immediately, there is no "ignoring" little tantrums. :nope: No one has ANY advice for me, other than to deal with it. I'm glad it isn't epilepsy but it is still very scary to see her like that and have absolutely no control in it.

    Does anyone have any experience with severe BHS? Is there anything that might help make them less frequent? Change in diet? I feel really hopeless.
     
  2. CityGirlEire

    CityGirlEire Member

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    There are seizures that can mimic bhs I believe.... Or non epileptic seizures.... And there was something I once read that a child scared itself by sudden noises that reacted like that, even if they were laughing or crying....
     
  3. RebeccaG

    RebeccaG Well-Known Member

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    :hugs:Oh hun! My little boy started having seizures and it's horrible. I'm not sure what BHS is? Is she on medication?
     

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