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  • Why didn’t I do that sooner? Dietary changes

    Posted by deann-r on October 18, 2018 at 11:41 am

    Do you ever know something isn’t quite right, but you don’t know what to do about it so you don’t do anything?  That’s how I felt with my feeding tube.  From the get go I hated it, but it’s one of those necessary evils.  Frankly, I didn’t even know there were options.  Options for the tube style and options for formula.  Once I learned I didn’t have to live with this archaic tube hanging out of my belly I switched to a low profile one called a Mic-Key.  So much better for me, but it started leaking a lot.  After unsuccessfully trying a few options with the tube itself I was referred to a dietician.  Apparently if the formula doesn’t digest properly it can cause those kind of issues.  Who knew!  Knowing those of us with SMA have more difficulty breaking down fats, dairy and animal proteins I told that to the dietitian.  After doing some research we decided on a more elemental formula and a multivitamin.  In just a few weeks its made a world of difference.  Not only has the leakage almost disappeared completely it sits better with my tummy in general.  So far even my bowel movements have improved.  I haven’t had to call anyone for an unexpected bathroom break.  Wish I would have done this sooner, but I didn’t know.  Don’t get me wrong I still hate having a feeding tube, but at least it’s more tolerable.

    Is there anything you’re unhappy with, but don’t know if there’s options?  We may not have the solution, but I think this is a great place to put it out there.  You never know, you might be the one saying, “Why didn’t I do that sooner?”

    deann-r replied 5 years, 4 months ago 3 Members · 4 Replies
  • 4 Replies
  • kevin-schaefer

    Member
    October 18, 2018 at 12:12 pm

    I know what you mean DeAnn. I don’t use a feeding tube, but I can totally relate to the whole “why didn’t I think of this before” scenario. I’ve been in that boat with acquiring caregivers, getting transportation, etc.

    Currently I don’t have anything pressing, but I am looking into support pads for my ear while I sleep. I sleep on my side for most of the night, and with my bipap machine on the skin on my ear often gets irritated. Ryan brought this up in another post a while ago.

    • deann-r

      Member
      October 18, 2018 at 3:21 pm

      Yes, Ryan had a good pillow suggestion.  I had to ditch a couple ear piercings because of this issue.  When I was at IKEA I found relatively flat travel pillows that work for me.  I only get there once every year or two so I stock up when I go.

  • ryan-berhar-2

    Member
    October 18, 2018 at 2:59 pm

    I’ve used Tolerex for a long time.  Maybe I’ll look into another kind of formula, because, as I’ve talked about here numerous times, I often wake up feeling crummy. However, it’s something I’m uneasy about experimenting with, because getting my tube feeds is literally a matter of life and death. It’s something I need to be cautious about.

    • deann-r

      Member
      October 18, 2018 at 3:14 pm

      If it’s not something you feel comfortable doing on your own, as I didn’t, I would recommend working with a dietitian.  Just make sure they’re willing to learn about SMA if they aren’t familiar with it.  They can help choose something that could be a good choice and monitor the transition.  I’ve heard a lot of people use Tolerex.  We decided to try Peptamin.  It’s not kind of somewhere between the Jevity that I was on and Tolerex that’s more of the AA route (I think).

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