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Muscular Dystrophy

oh_mariaoh_maria
in Special Needs

We were told today by our neuro that the suspect for DS's hypotonia/abnormal gait is MD (Limb-Girdle or Fasciascapularhumoral are the leading contenders). We are crushed, as we were optimistic his improvements were indicative of just BCH and not something more serious. That being said, we're starting testing to confirm which DX and going from there.

I am just wondering if anyone has any insight about MD and what to expect. I know it's dependent on the specific type and severity, but any experience or advice is appreciated.

TIA.  

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Re: Muscular Dystrophy

  • laurdinglaurding member
    We just had DD tested for a type of LGMD and it came back negative.  They still think it is MD related and are doing a muscle biopsy next week.  I am going to PM you!
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  • laurdinglaurding member
    Can't pm on the iPad...will try later or tomorrow!
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  • oh_mariaoh_maria
    Thanks very much! 
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  • laurdinglaurding member
    I cannot for the life of me send a pm...help?   Can you try to send one and I can reply?  Sorry!  Usually I am pretty tech savvy...
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  • pcefern1pcefern1

    My DS was diagnosed with Duchenne Muscular Dystrophy when he was about 8 months old.  Typically boys aren't diagnosed with DMD until they are between 3-5 years, but we had other medical issues that lead to a muscle biopsy and the discovery. 

    DS just turned 3 and so far he doesn't have many symptoms. His hips are tight and his balance isn't always the best.  He falls down a lot.  We do physical therapy with him to help loosen his hips.  We are also followed by a neurologist and in the next few years we'll start him on steroids.  Our goal is to keep him walking and out of a wheelchair for as long as we can.

    Me- PCOS DH-MFI TTC since 2003, several clomid+IUI cycles all BFFN, Forced break due to OOP, turned into a permanent break Unexpected family/private adoption in 2010 DS born at 26 weeks, beat all odds in the NICU Diagnosed with Duchenne Muscular Dystrophy 1/2011 Adoption finalized 2/2011- BEST. DAY. EVER.
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  • sooner1981sooner1981 member
    imagepcefern1:

    My DS was diagnosed with Duchenne Muscular Dystrophy when he was about 8 months old.  Typically boys aren't diagnosed with DMD until they are between 3-5 years, but we had other medical issues that lead to a muscle biopsy and the discovery. 

    DS just turned 3 and so far he doesn't have many symptoms. His hips are tight and his balance isn't always the best.  He falls down a lot.  We do physical therapy with him to help loosen his hips.  We are also followed by a neurologist and in the next few years we'll start him on steroids.  Our goal is to keep him walking and out of a wheelchair for as long as we can.

    I know it must have been a shock to receive this diagnosis--but it sounds like you guys are being very proactive.  Do you know about the MDA summer camps?  I worked at the MDA summer camp in my state for about 6 years--the kids have a BLAST and meet some of their best friends at camp.  Campers can start at age 6.

    To the original poster, a diagnosis of MD is scary--but it also opens up all the resources of a huge support organization that is dedicated to easing the worries and stresses associated with a muscular dystrophy.  I hope you get your answers soon.

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