Benign Congenital Myopathy

[Lathamia]

Hello,
My son is 4 and has just been diagnosed with benign congenital myopathy.  He has no symptoms other than low muscle tone in his arms, shoulders and hip.  He reached all the milestones early (walking, talking, etc), and is in general good health.  He runs around with other kids and doesn't get tired, fall or gets short of breath--the only difference is that he won't attempt climbing, and is generally cautious.

This is my question.  His pediatrician and his neurologist are telling us very different things.  While his pediatrician says that he'll always be kind of clumsy or physically cautious, but otherwise, fine, his neurologist says that he'll likely develop heart problems in his 40's or 50's.  We are doing as much online research as we can, but his diagnosis (benign congenital myopathy) seems to be almost meaningless, since it could have a variety of origins and thus, prognoses, and the doctors don't know exactly where his condition come from.

Armed with the little knowledge we have, what should we believe?  Does he have a normal or shortened life expectancy? Will exercise alleviate/reverse this condition?  What are the practical steps we should take? Where are some good resources to get more information on specifically this condition?

Finally, when he was 2 he suffered an episode of asthma and 1 year later, the same thing, but nothing in between, and nothing since.  Is it related?

Thank you very much.

[Quixotic1]

This is the kind of problem that is hard to deal with.  One doc saying he'll be okay and one saying there may be a time bomb.  I don't personally know the answer to your question, but my recommendation is this.  Ask for a referral to a nearby major academic medical center that has a pediatric neurology department.  It most likely will involve a wait, but this isn't an emergency situation.  In the meantime, ask if there is a good pediatric physical therapist or developmental physical therapist that could help your son get the most out his activity.  In my practice kids with hypotonia from almost any cause benefitted from good PT.  Good luck, Quix

[Quixotic1]

Does the neurologist call this myopathy or benign congenital hypotonia?  You might write to the MDA (Muscular Dystrophy Association) and ask for more information.  That organization deals with ALL times of muscular disorders.  They should be an excellent resource for more info and where you might go for more answers.  Quix

their website is  "mdausa.org"