Found Niece's Health Prob
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Thread: Found Niece's Health Prob

  1. #1
    UFO
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    Default Found Niece's Health Prob

    Thanks for the kind words and thoughts from the collective re my seriously ill niece. She is still in ICU at Sydney Children's Hosp but at last there seems to be a diagnosis. Apparently she has Guillane BarrŤ Sydndrome which attacks the protective coating of the nervous system - like stripping the insulation off electrical cabling is the best way to describe it. The signals go in one end of the nerve fibres but due to the viral removal of the nerve coverings the signal may not even reach the end of the nerve.

    Good news is that it is recoverable over time. However it will be a long struggle for Isabelle.

    Of course, the youngest the Docs at SCH have to date only heard of someone as young as 7 months getting this affliction. Someone in my family had to reset the record to 3 1/2 months!

    For more info on this see

    http://www.guillain-barre.com/

    It is not as rare as you may think and can affect anyone of any age.

    Might I take this chance to compliment the amazing people at Sydney Children's Hospital. The attention and care they have given have been absolutely astounding. The whole team of support people have been amazing!

    Also, the team at NETS (as featured on SBS a few weeks ago) were brilliant in their support and transport of Nicole and Isabelle from Dubbo to SCH.

    (BTW, when I told Nic this afternoon that AFers had passed on regards she said "Huh?" Deb said "you know, that internet forum he gets on to talk about French Cars)

    Did you like the mention of cars that are French as a final desperate bid to maintain relevance to the forum. Also, I have been driving to and from Randwick in the XM - luxury!!

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  2. #2
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    Quote Originally Posted by UFO
    Thanks for the kind words and thoughts from the collective re my seriously ill niece. She is still in ICU at Sydney Children's Hosp but at last there seems to be a diagnosis. Apparently she has Guillane BarrŤ Sydndrome which attacks the protective coating of the nervous system - like stripping the insulation off electrical cabling is the best way to describe it. The signals go in one end of the nerve fibres but due to the viral removal of the nerve coverings the signal may not even reach the end of the nerve.

    Good news is that it is recoverable over time. However it will be a long struggle for Isabelle.

    Of course, the youngest the Docs at SCH have to date only heard of someone as young as 7 months getting this affliction. Someone in my family had to reset the record to 3 1/2 months!

    For more info on this see

    http://www.guillain-barre.com/

    It is not as rare as you may think and can affect anyone of any age.

    Might I take this chance to compliment the amazing people at Sydney Children's Hospital. The attention and care they have given have been absolutely astounding. The whole team of support people have been amazing!

    Also, the team at NETS (as featured on SBS a few weeks ago) were brilliant in their support and transport of Nicole and Isabelle from Dubbo to SCH.

    (BTW, when I told Nic this afternoon that AFers had passed on regards she said "Huh?" Deb said "you know, that internet forum he gets on to talk about French Cars)

    Did you like the mention of cars that are French as a final desperate bid to maintain relevance to the forum. Also, I have been driving to and from Randwick in the XM - luxury!!
    Fantastic news (the kid getting better, not getting sick) Craig... Gee's I hope I never have to go through anything like that

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    Quote Originally Posted by DoubleChevron
    Fantastic news (the kid getting better, not getting sick) Craig... Gee's I hope I never have to go through anything like that

    seeya,
    Shane L.

    Good news Craig; hope the recovery all goes according to plan....and Shane, you can almost bet on it. Have kids, get dramas. Sooner or later at least one of 'em will go through some nightmare or other that you could lived without.
    Craig's family was luckier than we were but that's life; you seem to come out stronger & wiser for the experience.
    Nothing worse than sitting in intensive care for days on end keeping someone company who is too young to tell anyone how they feel and where the pain is and having to see a parade of Doctors all coming in, examining & giving different diagnosis. No wonder I'm bloody mad when you think about it.


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    Default Positive Thoughts

    Quote Originally Posted by UFO
    Thanks for the kind words and thoughts from the collective re my seriously ill niece. She is still in ICU at Sydney Children's Hosp but at last there seems to be a diagnosis. Apparently she has Guillane BarrŤ Sydndrome which attacks the protective coating of the nervous system - like stripping the insulation off electrical cabling is the best way to describe it. The signals go in one end of the nerve fibres but due to the viral removal of the nerve coverings the signal may not even reach the end of the nerve.

    Good news is that it is recoverable over time. However it will be a long struggle for Isabelle.

    Of course, the youngest the Docs at SCH have to date only heard of someone as young as 7 months getting this affliction. Someone in my family had to reset the record to 3 1/2 months!

    For more info on this see

    http://www.guillain-barre.com/

    It is not as rare as you may think and can affect anyone of any age.

    Might I take this chance to compliment the amazing people at Sydney Children's Hospital. The attention and care they have given have been absolutely astounding. The whole team of support people have been amazing!

    Also, the team at NETS (as featured on SBS a few weeks ago) were brilliant in their support and transport of Nicole and Isabelle from Dubbo to SCH.

    (BTW, when I told Nic this afternoon that AFers had passed on regards she said "Huh?" Deb said "you know, that internet forum he gets on to talk about French Cars)

    Did you like the mention of cars that are French as a final desperate bid to maintain relevance to the forum. Also, I have been driving to and from Randwick in the XM - luxury!!
    Keep being positive and have faith in modern medical techniques as a worker in health related industry I have seen many breakthroughs in treatments, and having a positive outlook towards life is one of the most powerful cures available. I hope with the continued support love and care your niece will make a full recovery, and she learns to drive in a Peugeot and has a long and happy life. Cheers LuLu

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    My daughters best friend got G-B at age 18. Terrified him, but he got over it. He is involved with some sort of support group now.
    My Philosophy teacher at Uni years ago got a similar thing called Poly-neuritis. It provided him with a lot of lecture material, what with being immobile and as he called it 'just a brain....in space'
    Hope junior gets over it ok. There can of course be full recovery quite quickly, and hopefully junior will not be traumatised by virtue of the age.
    Good luck, best wishes

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    Haven't been around for a few days Craig, but all the best for yout niece's health, mate. I think I know how you must feel - I've panicked over relatively minor illnesses that nevertheless have required hospital stays for my kids.

    Good luck to her.

    Stuey

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    Good news! I'm glad to hear that there has been a diagnosis and that she is on the road to recovery.
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    More good news. She's off the morphine ('bout time she kicked the habit!) and had some more hand movement today. Yesterday she opened her eyes a little and cried (must have been the sight of her father!!). All these are good signs on the road to recovery.

    I have passed on good wishes to sis and BIL and they are both sort of stunned that this community of people who wouldn't know them from Adam have passed on best wishes.

    thanks all!

    And of course, she will grow up to drive CitroŽns! (Well if I have anything to do with it she will!)
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    Quote Originally Posted by UFO
    And of course, she will grow up to drive CitroŽns! (Well if I have anything to do with it she will!)

    Maybe that was the ulterior motive behind all the messages and positive vibes to help her get through it....gotta keep the Cit drivers comin' from somewhere.


    Alan S
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    Quote Originally Posted by UFO
    More good news. She's off the morphine ('bout time she kicked the habit!) and had some more hand movement today. Yesterday she opened her eyes a little and cried (must have been the sight of her father!!). All these are good signs on the road to recovery.

    I have passed on good wishes to sis and BIL and they are both sort of stunned that this community of people who wouldn't know them from Adam have passed on best wishes.

    thanks all!

    And of course, she will grow up to drive CitroŽns! (Well if I have anything to do with it she will!)

    great to hear she is getting there

    to think kids have their whole lives ahead of them, it's sad to see one hospitalised
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  11. #11
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    Icon12 An Update to Niece's Health Probs

    Well....

    My sister and niece have been home since just before Easter. It turns out that it was not Guillan Barre as first thought but in fact was botulism. How weird we thought - but botulism is actually an airborne disease and being very young she had little or no resistance to it. It gives similar symptoms to GB but fortunately is 100% recoverable (if stopped before fatal of course).

    Isabelle (Ding to the family) is doing great now. Talking to sis on the phone last night and Ding was making heaps of 6 month old baby noises in the background.

    So all's well that ends well.
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    Quote Originally Posted by UFO
    Well....

    My sister and niece have been home since just before Easter. It turns out that it was not Guillan Barre as first thought but in fact was botulism. How weird we thought - but botulism is actually an airborne disease and being very young she had little or no resistance to it. It gives similar symptoms to GB but fortunately is 100% recoverable (if stopped before fatal of course).

    Isabelle (Ding to the family) is doing great now. Talking to sis on the phone last night and Ding was making heaps of 6 month old baby noises in the background.

    So all's well that ends well.
    Excellent news Craig, perhaps you should remove the AF sticker from Ding now

    Cheers
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    Good to hear Craig. After you've taken the sticker off, you'd better think of a new nickname, otherwise she'll end up driving a FIAT. After all, don't all Dings drive FIAT's?

    Stuey (putting on his Australia in the 1960's hat)

  14. #14
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    I was searching for another post and found this one from FOURTEEN years ago!

    An update now...

    Izzy is now 15 and, despite doctors warning that she may have acquired a brain injury from her illness, she is absolutely blitzing school and her piano studies (honors grade 5 A MUS A this year and now onto grade 6) works a part time job at Baker's Delight where she could practically run the store. Has one state and national prizes for cattle showing and judging etc etc.

    She must be set to break some hearts in the very near future too. Think tall, blonde, part Dutch background, and brains to boot.

    It's good to know that sometimes the terrible things work out the best.
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    Good news UFO. Dutch genes are indestructible, though I wear Levi's myself.

    John

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    That is a great story UFO . But one question remains. Did she become a Cit girl, or better still, did she become drawn in to the irresistible charm of Renault's
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    cheers,

    John

  17. #17
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    Quote Originally Posted by J-man View Post
    That is a great story UFO . But one question remains. Did she become a Cit girl, or better still, did she become drawn in to the irresistible charm of Renault's
    She's not up to L plates yet, but is an adept motorbike rider and probably has driven her parent's cars when they go to visit friends on farms near and far. Based on that, I am pretty sure she will become (cough splutter) a Toyota driver as Mum drives a Landcruiser and Dad a Hilux.
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    Default Good to hear..

    Nice 2018 update, all parents dread their children's hospitalization, brings back memories of many years past and the relief when the worst is past. I Wish her the best for the next 14 years, they will be exciting,... and perhaps an update or two on the way Craig.
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