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Thread: time for champaigne. AWESOME meeting with neuro. Change of drugs = escape time :)

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  1. #1
    Distinguished Community Member
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    Cool time for champaigne. AWESOME meeting with neuro. Change of drugs = escape time :)

    G'day neuro buddies both oldies and youngies.

    Thank you for your thoughts and prayers for the neuro meeting last Friday.

    What can I say? Where can I start? What words are sufficient to describe our excitement?

    Well, let's see.

    The neurologist has agreed to trail Midazolam via the gums buccal, plus Zoffran (anti nausea drug) via wafer, when Grant has a big tonic/clonic seizure and when we would normally give Paraldehyde

    This is UNREAL. too exciting to be true. Are we dreaming. (Pinches myself, yikes) No this is not a dream!

    Ever since we have been caring for Grant = 22 years, we have almost never been able to leave him on his own with a carer, because the carer has not been permitted to give seizure medication. The situation even became more complex when Grant was put on Paraldehyde, because Alison and I and nurses and doctors are the only ones allowed to give Grant Paraldehyde.

    BUT

    Because Grant will now be allowed to have Midazolam Buccal plus the Zoffrin wafer, the SW (daily support workers for Grant) can, yes indeedy, not a mistake, printed correctly, yes, indeedy, they can be trained to give the Midazolam and the Zoffrin :)

    BUT THERE IS MORE

    Not only can the home support workers be trained to administer Midazolam, but also the day centre folk can be trained as well.

    This is too much Paul, I can here you saying :)

    WHAT THIS MEANS

    For the first time, when Grant is home with a support worker, I will be able to leave the house. When Alison is on school term break, we will be able to leave the house with the carer watching over Grant. = JUST ABOUT UNBELIEVABLE

    It is just soooooooo exciting :) We will still have the Paraldehyde as backup of course.

    GET THE PLONK OUT

    Time to go down to the bottle shop and buy a bottle of your favourite plonk to celebrate with us, we reckon. If you can't afford a bottle of plonk, then a cyber bottle will be okay :)

    The neurologist wants to see Grant in 3 months for a review. We do of course have to get the workers trained, but Grant's funding has the money to do that, so it is just a question of expediting training as quickly as possible.

    Of course we are not there yet. Grant already is on daily frisium (a benzo) and as Midazolam is also a benzo, then we might be looking at marginally reducing Grant's frisium dose in 3 months. The neuro is happy at looking at this possibility.

    So, now that you have your cyber plonk out, all together, one, two, three = Three cheers for the neuro in allowing Grant to trial the Midazolam

    Thank you for your thoughts and prayers and seeya at the bottle shop just beside the brandy in a few hours :)

    Paul, Alison and Grant, pinching themselves to make sure they are not dreaming, and Grant the champ resting peacefully.
    Last edited by Paul from Australia; 03-18-2012 at 03:25 AM.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

  2. #2
    Distinguished Community Member Ging's Avatar
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    Kudos Paul , that is fantastic news, arms up and dancing around the room !:)

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Awesome! I am so happy for you & Alison and of course, Grant too! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Excellent News! Very happy for you!


    Hoisting my cyber plonk CHEERS!

    Love & Light,

    Rose
    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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