Viewing 5 posts - 1 through 5 (of 5 total)
  • #150823
    4 year old newly diagnosed.

    Hi, we’ve had the news my 4 year old has MD. We’re in shock, we always knew he had something but it’s still a shock to hear the words come out the consultants mouth.

    I’m full of questions, so I’m wondering if there are any support groups in Manchester? Or even better closer to Oldham? I’d love to meet other parents & other people who have the same condition.

    Thank-you for reading x

    Amydissington91
    Participant
    Posts: 0
    Joined: 01/08/2017
    #150850
    Reply To: 4 year old newly diagnosed.

    Hello and welcome to the forum. I am so glad that you have found us, I am sure that we can help, and I think you will soon find that there will be some local groups to contact for you. However, there are so many different forms of MD around it would be really useful to know if you have yet been given a diagnosis as to what type of MD your little one has, as there are often different support groups for different types. I am also surprised that your neurologist has not given you that information already. But worry not we can get you on to the right track.
    May I also say that I have been in your position too. My number 2 son was diagnosed when he was a little younger than your child, and yes it does come as a great shock, but i can tell you that he is currently living life to the full and enjoying himself immensley. The future for your child need not necessarily be the dark one that we all think of. It may be different from what we had hoped, but it can still be a full future.
    So do please dcome back as soon as you can, so we can get the correct info for you.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #150881
    Reply To: 4 year old newly diagnosed.

    Thank-you Mike. We are awaiting my son’s appointment for the neurologist. My son’s pediatrician has done lots more tests to find out which type he has. They are 100% saying it’s MD & are 90% sure it’s DMD. We will know more once the next lot of results are back & once we have seen the neurologist.

    Seems very common yet never heard of a support group locally like I have for other disabilities, fingers crossed there is one close by. X

    Amydissington91
    Participant
    Posts: 0
    Joined: 01/08/2017
    #150890
    Reply To: 4 year old newly diagnosed.

    As far as I can discover there are bo specific support groups local to you although I am sure tehre is a Facebook group. i do not use that platform but i am sure one of the other mods can chip in and let you know more specifically. You also have to remember that, the condition itself is broken down into many different sub groups of the variants of MD. As a result there is usually not many people with the same condition in your locality. For example in my area I am only aware of one other person with FHSD. You might want to put out some feelers on Facebook to see if there are any local MD groups. IS your little one starting school this year or next? If it is this year it might be worth giving a heads up to the school so that they know in advance. If it is next year then you will have some time to get some more specific information together
    You might also want to access the information packs available from MDUK which you will find amazingly helpful to you and your little one.
    Clearly you will not get a clear picture about what the prognosis is for quite a while, even then. Please do not think that your child will end up as the worst case, they may not, as each of us develops MD in different ways. That is also something that you have not yet mentioned and that is how is your child affected? What made you seek medical help? If we know that then i am sure we can help further.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #150909
    Reply To: 4 year old newly diagnosed.

    Hi, welcome to the forum.

    Most areas have a Muscle Group and I believe this is this closest to you: North West regional muscle group

    You must have a lot of information to process right now. When you are ready there are some factsheets and resources for parents and families here

    I do know of some very good national support groups for DMD. Please come back to us if you get any further diagnosis. As Mike said, there are many online support groups that tend to be condition specific – many on Facebook. Again, we can point you in the right direction.

    Finally, if you are not already in touch, it might be a good idea to make contact with the regional care adviser for your area.

    List of neuromuscular care advisers

    All the very best, keep in touch 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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
Viewing 5 posts - 1 through 5 (of 5 total)

You must be logged in to reply to this topic.

Keep in touch