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  • #149690
    Hello :)

    Hello,
    I’m totally new to forums so please bear with me…

    I have 2 boys diagnosed with muscular dystrophy. My youngest had genetic testing thinking he had downs syndrome but turned out he had md! He had a biopsy and we were told he had intermediate muscular dystrophy ie inbetween duchenne and becker. I’d never heard of it before and he was 3 when diagnosed. My older son I pushed to get tested and turned out he also had md.
    It’s all a waiting game that I’ve found extremely difficult to come to terms with.
    These last few weeks (he’s now 6) after running round for 10-15 mins he’s crying in pain with his legs and tip toeing after…. can anyone tell me if this is the start of it? I just don’t know what I’m looking for. I massage his legs but he won’t take any pain relief, he’s mentally 2yr old, goes to a specialist school and has limited communication :(
    Thanks for reading this x

    LisaT
    Participant
    Posts: 0
    Joined: 21/05/2017
    #149698
    Reply To: Hello :)

    Hello and welcome LisaT. I am sure that you will find many on here willling to help you. I can understand some of your frustrations as my own son and myself went through a similar mill. However, MD is a complex condition with many diferent variants and sub variants that there is no “normal’. The specialists that are caring for your children will be just as keen to help them through it as you are, but until all the evidence is in and a firm diagnosis made then they will find it difficult to advise you fully. It is vital that any care that is offered is approriate and proportional. I have FHSD and one facet of that is , for me, whole body pain, for others less so, or even not at all. IF he is in pain, and will not take any pain relief then helping him as you are doing may well be making a good difference. Considering the life a six year old lives, if you can, try and massage his legs before he goes running to free up the muscles. Heat pads, or a warm bath are amazing at relieving muscle pain. If he is at a specialist school already you will find it helpful, if not essential, to consult with their physiotherapist if they have one. If not then speaking to the head and or the school nurse, to make them aware of his pain is also important.
    Clearly this is a omplex situation which will need proper evaluation by a specialist team. It can be frustrating to wait but it is important to give them time to assess things properl. In the meantime you are doing what you should be doing, and of course watching your children for additional signs that may be helpful to the specialists. I am sure you already have, but if not, read all you can about the condition, as you will need to be fully briefed to help your children properly.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #149705
    Reply To: Hello :)

    Thank you Mike,
    My boys have a formal diagnosis one which is intermediate muscular dystrophy and the other is becker muscular dystrophy which we were told my youngest could be a bad becker or good duchenne. My problem is its extremely difficult to find any information on intermediate md. And the professionals involved can only tell me we have to wait and see because each and every child is different.
    It’s such a hard thing to come to terms with but at least reading on here I’m not alone which really helps

    Lisa

    LisaT
    Participant
    Posts: 0
    Joined: 21/05/2017
    #149712
    Reply To: Hello :)

    Hi Lisa and welcome to the Forum.

    A group Called DMDpathfinders may be useful source of information and support. it is user led by adults and teens with DMD.
    Find them on Facebook =https://www.facebook.com/DMDPathfinders/?hc_ref=SEARCH&fref=nf
    Web =https://www.dmdpathfinders.org.uk/

    Toe walking is a sign of more than one form of MD. DMD and Becker being conditions being two.. I am Female (35)with CMD and have toe walked to some degree all my life. I have been successful with physio.

    In interest of safety with your sons age I cant share too much of my routine but if you tell me what area you are in. I shall try and find the MD Care Adviser for your area who may be able to get you in touch with an MD physio.

    One activity I found very good all my life was walking in water for my legs. I never was strong enough to swim but would go and walk lengths of the infant pool. Hydrotherapy was also very good as the warmer water eased muscle aches.

    I think professionals are more cautious now with future type predictions than they was when I was a child.

    I will check in with our other MOD for parent groups

    Cat
    Ps if you post your area I shall also look for MD peer support group, parent groups and date and location of your next nearest MD conference or Information days.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #149713
    Reply To: Hello :)

    Hello Cat,

    I live in shropshire and I think the closest group to me is Birmingham but it’s still over an hour drive for me.

    My youngest uses the hydro pool at his school and I tried the pool at my local hospital but because of his behaviour I dear’nt go back :( he has possible adhd (currently under assessment) and also under assessment for autism too so he’s go so much going on. I’m just so concerned because he’s tiring alot quicker and is in pain.

    Thank you for almost your advice I’ll definitely look into that other dmd pathfinders page.

    Lisa

    LisaT
    Participant
    Posts: 0
    Joined: 21/05/2017
    #149715
    Reply To: Hello :)

    Hi Lisa

    Glad you have found the forum. I know a lady who helps run a national support group that might also be of use.

    The Duchenne Family Support Group

    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
    #149719
    Reply To: Hello :)

    Hello Lisa,
    Muscular Dystrophy UK also has a network of peer support volunteers, and we have plenty of parent’s for Duchenne and a few for Becker too. Please do email me on j.rackham@musculardystrophyuk.org and I would be happy to speak about both this network and the Duchenne Family Support Group.

    Joel.

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #149722
    Reply To: Hello :)

    http://www.autismlinks.co.uk/support-groups/group-support-west-midlands/shropshire-autistic-supporters?region=

    https://www.netmums.com/shropshire/local/index/support-groups/special-needs-autism-aspergers

    I tried Googling Autism Friendly swims. This resource may know of Autism Friendly venues

    I know Autism and ADHD are not same condition but it hit more results xx

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #149775
    Reply To: Hello :)

    Thank you for all your replies I have a lot to be looking into now!
    I spoke to the muscle team and they said I just have to keep checking my sons urine, if it’s dark then it means he’s doing too much or that he could actually be having muscle pain due to a growth spurticaria but I don’t believe it’s that due to him walking a little funny now as if his left leg is really stiff :/ maybe I’m just looking for everything and anything and stressing out too much.
    Again thank you all for your replies xxx

    LisaT
    Participant
    Posts: 0
    Joined: 21/05/2017
    #149792
    Reply To: Hello :)

    When I worked in hsopitals I always relied on what mum thought and had seen. Do not think you are stressing out too much. this is your childs health and future that you are caring about. Anything you notice will be of help to those caring for your children so keep watching.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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