Viewing 5 posts - 1 through 5 (of 5 total)
  • #189181
    I’m scared

    Hi guys
    I have a 17 year old that has MD and he’s getting weaker is not able to swallow anymore and needs his bi-pap around 90% of the time I’m so scared.is there anyone that is in the same boat as me

    Tara
    Participant
    Posts: 0
    Joined: 22/08/2020
    #189183
    Reply To: I’m scared

    Hello Tara. I am so sorry that you have found us under these circumstances. I am sure that there are others on here who have been in similar circumstances, and they will reply in due course. Please may I suggest you seek medical help, if possible from your neurologist. This seems to be something which needs to be looked at quickly if the deterioration is coming on quickly.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189219
    Reply To: I’m scared

    Hi Tara,

    I’m not a parent but am using my vent almost full time due to my gastro intestinal complications which cause extreme fatigue and breathlessness. In the not to distant future it is likely that I will need to transition to PEG feeding.

    Don’t know if you’ve heard of this group Pathfinders neuro muscular Alliance (formerly DMD pathfinders) You might be able to connect with other parents via them. https://dmdpathfinders.org.uk/dmd-pathfinders-is-changing/ also on facebook

    Sorry I cant add much but sending massive hugs.

    Cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #189358
    Reply To: I’m scared

    Hi Tara,

    Is it Duchenne your son has. I admin Duchenne Parents Zone – a Facebook support group specifically for parents of those with Duchenne in the UK & Ireland. If you’re on Facebook and have a child with Duchenne you’re more than welcome to join us x

    https://www.facebook.com/groups/DuchenneParentsZone/?ref=share

    KatR
    Participant
    Posts: 0
    Joined: 04/07/2019
    #189362
    Reply To: I’m scared

    Where do you live Tara?

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
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