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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.


  • This topic has 2 replies, 2 voices, and was last updated 1 month, 1 week ago by DeAnn R.

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      • #21620
        DeAnn R
        Keymaster

        In case you haven’t seen this article I thought I’d share it here. I’ve often wondered if there would be long term effects from repeated lumbar punctures. The article suggests that although it’s been well tolerated, some monitoring of CSF can be done. For me it’s not something I’m concerned about. What did you take away from the article?

      • #21622
        Alyssa Silva
        Keymaster

        I’m a little confused. Doesn’t our CSF get tested regularly already? After each injection, I always get lab results of my CSF. Does that not happen at all injection sites??

      • #21627
        DeAnn R
        Keymaster

        I’m pretty sure mine isn’t tested. Usually I see in the notes clear CSF was removed, but that’s the extent of it. I’m sure if it looked cloudy or suspicious they’d do more testing. Maybe depends on the facility?

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