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Thread: Beth VNS update

  1. #1
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    Well we saw the Prof on monday and Beth will have the VNS turned off for now. It will not be turned off until 12th March as the nurse is away and then booked up. We are going to see how her voice and swallowing go over the next 6 months and if it improves we may look at turning it back on. They will try her with a new med once its been turned off but he says she has quite complex seizures. When she has had EEG in the past it either shows up on the left or right or central. Apparently this makes it quite hard to control her seizures with meds. I can not see why we have to wait for it to be turned off and he said himself its on such a low setting that it will not control her seizures . He has also told us that he does not think the surgery or VNS has caused her to almost lose her voice or have swallowing problems. He thinks her health is deteriorating. I am not sure on that but we are seing the Peads on tuesday so we will see what they say.

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    I hope the find out whats going on soon....

    You and Beth are in my prayers Michelle...





  3. #3
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    Much love to you and yours darlin....I hope for the best of news :)
    One great pair of shoes can change your life.~~Cinderella
    Be the kind of Woman that when your feet hit the floor each morning the devil says " ! She's up!!"




    :muahaha:

  4. #4
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    Michelle ,l have as many as you need.
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  5. #5
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    Oh Michelle..lots of hugs to you and Beth x







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  7. #7
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    Thanks all. Its a little stressful at the moment and i am hetting alot of niggly pain which always comes along when things are not going to well,

  8. #8
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    Wishing all the best of luck for some good news on Tuesday






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  9. #9
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    Re: Beth VNS update. Update no 2

    We have seen the peadiatrican with Beth today. She has to have a videofluroscopy and chest xray done. It does sound like it has something to do with the VNS and they think its permenant. We now have to watch her closly as she is now prone to pnemonia.

  10. #10
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    Poor Beth. It never rains but it pours.





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