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Thread: What a night and day

  1. #1
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    Beth did not settle well last night and was still wide awake at 12pm which is not her. She was unsettled for most of the night and then at 4am she had a massive seizure, we administered her rescue meds which she seems to live on at the moment and then she went straight into another, we can now do nothing but hope. Just got the phone to get ambulance and she thankfully came out of it. She has taken all day to get back to her normal self. I am starting to worry now as they are getting worse and her new drug is not helping. She has stopped eating lately and her weight is falling off, she also wants to be in bad at 5pm and sleeps right through till 7am. We have an emergency appointment on monday to see her consultant thankfully.
    I then had a meeting with social worker to sort out what's in her best interest, some of it is so stupid like if she can be strapped in her wheelchair and if she can use cot sides .
    I then had an appointment to have ear candling as still suffering with my ears but i sat at the clinic for 45 minutes and the girl did not turn up. When i got home there was a message for me saying i would have to pay for not going . It turns out they told me the wrong clinic . I told them to phone the Camborne clinic and they will verify i was there so have to go again tomorrow but i will not be paying for today's. So roll on bed time.

  2. #2
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    I am so sorry for you and for Beth, When a child is ill it just tears you up. How long has she been on her new meds? Have you ever thought about taking her to see someone in the States? The Cleveland clinic comes to mind.

  3. #3
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    Oh hun.I am so sorry about Beth. You must have be frantic.When did you request consultant appt as could it be this week. Have nothing but admiration for you Michelle. These last 24 hours have been far to streessful for you.
    [SIGPIC][/SIGPIC]

  4. #4
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    Thank you both. We can not get an appointment before as the Proff is on holiday, they are always on holiday when you need them most. She has been on the new drug for about 3 months and this is classic due to her epilepsy. Drugs are aimed at specific parts of the brain and Beth has varied focal seizures which means most parts of her brain due to her brain damage. This makes it very hard to control them and a new drug works for a few months and then gives up but sadly they are the worst they have ever been now.
    We have thought about the states but sadly there is some difference in what USA use for drugs and what we allow and also vice versa, so out of the question.

  5. #5
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    Definitely a very worrisome time!

  6. #6
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    Oh my god Michelle... what a rough night and day

    Beth is in my prayers





  7. #7
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    I'm sorry Michelle, i really don't know how you stay so strong.














  8. #8
    Senior Member mumof2's Avatar
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    oh Michelle, that's so tough for you all




  9. #9
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    Oh Michelle...what a blooming awful time you're having. Nothing much I can say except I'm thinking of you and sending you and Beth hugs






  10. #10
    Senior Member Mandy's Avatar
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    Oh Michelle! You have had a rough day, I hope you get Beth sorted our soon.


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