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Thread: Bek the liver transplant kiddo has had another seizure Tacrolimus. Advice neded.

  1. #1
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    Oct 2006

    Question Bek the liver transplant kiddo has had another seizure Tacrolimus. Advice neded.

    Hi neuro buddies old and new.

    Bek the Good Friday liver recipient is doing well in many areas. She is out of ICU. Her 'angel' liver is behaving itself. Bek is now at last breathing much better. She was on 15 litres of oxygen for a long time.

    Unfortunately one of the immunosuppresive drugs Tacrolimus has caused her to have another seizure, the second one she has ever had. Her mum is obviously very upset.

    I don't know if anyone here has any experience with Tacrolimus as it is a transplant drug. I wonder if another drug would be a better substitute. Of course this is all way beyond my understanding and knowledge area.

    Please pray for the theraputic level to be right WITHOUT any seizure activity.

    God bless and seeya,

    Paul, with no voice and on antibiotics!, Alison having to look after Grant, Paul and Alison's mum, and Alison is exhausted, and Grant who is in champ mode but still coughing and spluttering.

    Ps Rose, I haven't had time to answer your questions regarding Grant's spluttering, but will try and answer soon :)
    Last edited by Paul from Australia; 04-27-2012 at 05:02 PM.
    Grant's story in pictures and music. A must see :)
    Seeya there :)

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((Paul, Grant & Alison))))))

    So sorry to hear that you've been ill, Paul. I don't even remember the questions I asked you so please don't fret over answering them. I pray that the antibiotics kick in quickly for you and knock that bug to New Zealand.

    My thoughts are with Alison too, as her plate is quite full now. It's hard to do it all, when your mate is out of commission. Been there, done that, and have the t shirt. Please give Alison my love and support.

    Delighted to hear that Grant is in Champ Mode, despite the coughing and spluttering. (Champ's pal in America, Jon, is doing the same. So they are in good company together.) I am praying for that all to subside.

    Of course, I have no transplant experience nor any familiarity with the drug causing Bek's seizures. Perhaps a search on the internet will bring up some sites for transplant patients, which might offer more insight?

    I'm praying for Bek's full recovery and for those seizures to cease.

    Get Well Soon, Paul~

    Love & Light,

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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