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But what causes it?

April 7, 2008

That’s the question we get again and again when we talk about IT Boy and his hypotonic condition.  Hypotonia is a condition, not a disease and as such, can be caused by hundreds of things, most of them too horrible to make you want to continue doing your research on Web MD.  We’re addressing his issues with many and varied therapies, and he has made progress, but not as much as anyone would like to see.  No pediatrician, therapist or specialist has implied that there is any reason to believe that he has anything more than a delay, but still, we’re left to wonder.

I subscribe to a Hypotonia message board and there is one common theme among all the parents who post there.  It boils down to “my kid has this thing, and I don’t know why.”  Some parents have a diagnosis of autism or CP or various muscular distrophies, but most don’t.  Many go through batteries of tests, ranging from simple blood tests to more invasive muscle biopsies to try and get a true diagnosis.  Some get one, some do not, and on they go. 

I had been content for a long time to go this route, but we recently made an appointment for him with a Pedatric Clinical Genetics specialist.  If there is something to this condition that can be addressed, great.  If he has something else that we can’t do anything about anyhow and have to let the therapies take their course, so be it.  At least we’ll know, and as a parent, I can’t help but ask.

3 Comments leave one →
  1. sara permalink
    April 14, 2008 12:57 pm

    What’s the name of the message board? I think I want to join it. Would also love to hear about your visit with the specialist.

  2. April 14, 2008 1:06 pm

    Yahoo has a hypotonia message board. I’m not active on it, but I do read postings. Most are from confused parents without answers, so it ain’t exactly an upper.

    Meeting with specialist next month! Earliest appointments when I called were in MAY!

  3. sara permalink
    April 21, 2008 8:25 pm

    Oh boy – just checked out a couple of posts – definitely not for the faint of heart.

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