Viewing 5 posts - 1 through 5 (of 5 total)
  • #128117
    DMD 5 year old


    Hello all, my 5 year old son has a type of Duchenne muscular dystrophy. He was diagnosed about 18 months ago, but it does not seem to get any easier to come to terms with.

    I have been trying for the last 12 months to keep him in main stream education. I hope there are people on here with a little more knowledge who may be able to help.

    Hopefully in the future, I will be able to return the favour.

    Posts: 0
    Joined: 26/04/2016
    Reply To: DMD 5 year old

    Hi GL

    Welcome to TalkMD!

    Unfortunately we are still hearing parents in disputes with Local Authorities despite legislation in place. My Mum had to convince the LA that mainstream was the right option for me some 33 years ago.

    We will help where we can and can signpost you where we don’t know the answers. Bare with us.

    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
    Posts: 2,246
    Joined: 05/03/2015
    Reply To: DMD 5 year old

    Hi GL,

    My name is Joel and I work in the advocacy team at Muscular Dystrophy UK. This may be something we are able to help with. Please do give me an email on if you would prefer to talk over the phone then please do let me know your telephone number.


    JoelR JoelR
    Posts: 0
    Joined: 01/12/2015
    Reply To: DMD 5 year old

    :new: hello all,

    my 9 year old son recently diagnosed DMD.
    our orthopedist told us to get cheaked his CPK level.
    on 28.4.2016 diagnostic of CPK was 12762. it was shoking news for me as i got to know that normal CPK levels are 20-200.
    when yesterday on 3.7.2016 i again cheaked CPK levels which is now 5494.

    now can anyone tell me what is this means..


    Posts: 0
    Joined: 04/07/2016
    Reply To: DMD 5 year old

    Hi sachin,

    Sorry to hear about your son’s diagnosis, hopefully I can help with your question.

    CPK stands for Creatine PhosphoKinase, which is an enzyme found in muscle. When muscle becomes damaged, CPK leaks out into the bloodstream. High levels of CPK in the blood are therefore a marker of muscle damage, which unfortunately is what happens in people with Duchenne muscular dystrophy.


    Laura Jacobs
    Posts: 0
    Joined: 11/10/2016
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