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Thread: Grant is to have an EEG because he is so stable :)

  1. #1
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    Thumbs up Grant is to have an EEG because he is so stable :)

    G'day neuro buddies and Grant fans :)

    Tomorrow (21/08/2011), Grant is to have an EEG, the first one in about 4 years.

    Why? Because he is so stable ;) Good reason for an EEG eh ;);)

    With Grant's new concoction of AED's being

    Dilantin/Phenytoin
    Frisium
    Vimpat

    (he has been on the Frisium and Vimpat. since December)

    Grant has been absolutely rock stable. Totally and utterly since April :)

    Since April, we had one nasty flurry, just after Grant had come out of incarceration at the rehab centre, which was probably stress related. Since April the only extra medication that we have needed to give was a couple of Valium tablets to calm him down.

    We are now in RECORD stability territory. It is just so exciting!

    When Grant is awake, he does seem to be more alert. A carer who had been overseas for 6 weeks came back and said that he was so different now :)

    Of course Grant is not awake all the time. As he has zero cycadian rhythm, he can sleep all day and be awake all night, so we don't always see him alert studying Plato and Aristotle ethics, intergral calculus, or Einsteen's theory of relativity. He is a bit behind on those at the moment ;);)

    Of course we praise God for what has happened and Grant's current condition.

    We have a very good relationship with the new neurologist, who is a very, very caring man. He is only 40 so really just a kiddy, but he is very knowledgable. He responds to my emails almost within a day, which is unreal.

    I have a wonderful relationship with the joint medical guardian. She is a Christian, so we do have much common ground.

    We have a good relationship with Grant's new hospital. But of course Grant has not been there in an emergency situation, and our intention is for him not to need to go there in an emergency.

    Grant is now munching away on 2 blended meals a day, plus 2 tins of Jevity. A compromise, but we are happy with the arrangment. Especially given that in the court order I had to follow the dieticians guidelines 100%, and as you know hospital dieticians in Australia are horrified at the thought of giving some blended food down the PEg = horror, of horrors. So for the hospital dieticians to give me permission to give Grant blended meals is a fantastic breakthrough.

    The only issue really is Grant's dicey hip with the possible haematoma, but the neuro is onto it, and hopefully soon, we will have an evaluation by the otrtho surgeon at the new hospital.

    Best wishes to all here, and come on folks let's get braintalk back up and running with everyone joining again. This is the place to be really isn't it.

    God bless and seeya,

    Paul, Alison and Grant the absolute champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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

    It's so fantastic to read this positive update for the Champ. Seizure control is such a blessing, and I give thanks for Grant's tolerance of and positive response to these meds.

    The medical supports in place for Grant now sound excellent, and we can't really ask for more than that. I like Grant's new neuro based on all that he's done for Grant so far, and neuro praise from me doesn't come easily! :) So Good On Ya, New Neuro! :)

    I'll be anxious to read about the EEG results, as well as the diagnosis of that bump in the Champ's leg. My prayers continue that it is nothing concerning and easily treatable.

    I'll be here until the lights go out. I'm hoping some of the old gang will stop by more often too. :)

    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.

  3. #3

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    So, only Grant would merit an EEG because he's doing well!!!!
    Maybe he's stabilizing now that he's reached adulthood? Nice thought, at least.

    Happy to have braintalk back, and to be hearing good news on it, too.

    - momster
    Momster, mom to 2 boys: one of whom has CP, NLD, ADD, anxiety disorder, osteopenia/porosis and a few other letters following his name; and married 25 years to a wonderful guy

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