Viewing 9 posts - 1 through 9 (of 9 total)
  • #75709
    Into the unknown tomorrow

    Hi all, tomorrow we have an appointment with the consultant to discuss the genetic results of a dual diagnosis for our 8 nearly 9 and 5 year old sons. Life was great up till the end of August when we mentioned concerns about our eldest son at a regular paediatric appointment we have, tip toe walking struggling with his bike up hills and big calves and trouble with stairs, after a referral from the physio suggesting something more he had a blood test with a ck of just under 17k, having red up on it we got our other son tested as soon as we got the first results and his was 37k. We’ve been waiting 2 months for these results… And what a 2 months it been.

    We’ve read a lot on line had the letters back saying it’s a MD, now have physio, OT etc speaking to school but tomorrow is d day.

    I guess the title of the post says it all, my boys are as most people’s are the sweetest, nice and cheeky boys you could meet so innocent and yet will now likely face challenges I couldn’t have imagined, but over the last 2 months I have constantly.

    I have to admit I have set my self up for The worst tomorrow and if anything I’m hoping this is a safe place to say all this. Looking back everything is so obvious and yet there is hope.

    We have also started to use the support networks including those offered here but as of tomorrow we’ll know the answer and undoubtably will be using more.

    Take care

    rogersuk
    Participant
    Posts: 2
    Joined: 01/11/2015
    #97107
    Re: Into the unknown tomorrow

    Thank you for sharing your thoughts and fears, I’m sure that your post will strike a chord with many members. I cannot begin to imagine what awaiting a diagnosis is like from a parent’s perspective.

    I hope whatever happens tomorrow, you have good support from understanding people. Depending on what is discussed, there may be a lot of information to absorb and process. We are here if you want to return to the forum at any time and we can signpost you to relevant places too.

    All the very best.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #97108
    Re: Into the unknown tomorrow

    Oh rogersuk,
    I feel for you and your family , hopefully things won’t turn out to be quite so bad but we’re all here for you no matter what the news may be..
    Good luck !
    All the best.

    Shellybear
    Participant
    Posts: 364
    Joined: 09/12/2010
    #97109
    Re: Into the unknown tomorrow

    Hi Roger, all the best for tomorrow. This is a great place to discuss any worries or just to go over anything.

    croissant
    Participant
    Posts: 32
    Joined: 29/10/2015
    #97110
    Re: Into the unknown tomorrow

    Roger [and family], together things can be conquered. We are here ready to listen, entertain or just let you vent frustrations. Remember to give yourself time, you are a family first, everything else follows.

    Fingers crossed.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #97111
    Re: Into the unknown tomorrow

    Hi guys, thought I’d better update, the boys have duchenne duplication in exon 3-11 both boys exactly the same.

    This is not the news we wanted to hear however the boys are still the boys and our job is the help support them through it.

    rogersuk
    Participant
    Posts: 2
    Joined: 01/11/2015
    #97112
    Re: Into the unknown tomorrow

    Thanks for updating us. The news is naturally distressing for you but perhaps not totally unexpected? I hope you will find the forum helpful in the coming weeks & months and the consultant and your GPs will be sympathetic and point you in the right direction if you need specialised services.

    best wishes

    Sybylla

    sybyllascarlett
    Participant
    Posts: 383
    Joined: 07/02/2012
    #97113
    Re: Into the unknown tomorrow

    There is a lot of support on here Roger, come vent, chat, ask, it can help a lot.

    croissant
    Participant
    Posts: 32
    Joined: 29/10/2015
    #97114
    Re: Into the unknown tomorrow

    The regional advisors can be of great help, we assume you are in touch with one of them.

    Many of us here are so grateful for the support and assistance that we get.

    Only recently we were inspired by how much Jon Hastie has achieved with this
    type of M.D.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
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