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  1. #1
    Join Date
    Jan 2011

    Thumbs down GMFCS grading, level 5


    Well the title says it all. We had Bree assessed and she falls at level 5, with 1 being the best and the scale going from 1 to 5 this was a pretty devastating thing to be told.

    I don't get on here often, but I am on Facebook. For any of my friends here who haven't added me send me a private message and I'll give you my RL name!!

    I'm not dealing with things too well atm, I just wanted to share in case anyone else has had bad news recently.

    Oh , yeah and her Infantile Spasms have most likely developed into Lennox Gastaut Syndrome

    Life sux

  2. #2
    Join Date
    Jan 2009
    to you guys. I have pm'd you. Thinking of you xx

  3. #3
    Join Date
    Feb 2009
    Oh Kiz ... big ((hugs)), it's so hard when we get that official confirmation. I remember going through the GMFCS levels and knowing in myself that Leacie was on par with a level 4... but at that time the professionals were swinging between 3 and 4... so I lived in hope that one day she would walk unaided... then last year they finally said she's definately a level 4 (and again at each visit)... even though I was expecting it the actual words crushed me... this is my daughters future.

    But then when I got home I just thought, this grading doesn't change anything, she's still the same girl... still full of beans and the centre of my world, all it is is another official diagnosis that will help her through life when it comes to funding and help.

    I realise level 5 is considerably more complicated than level 4... but try to just keep taking each day as it comes... I know looking too far into the future can be so overwhelming.


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