This topic contains 0 replies, has 1 voice, and was last updated by  DeAnn R 1 week, 1 day ago.

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     DeAnn R 
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    I would love to learn more from any adults with feeding tubes.  When did you require one? What style is it? Do you do continuous feeds or bolus (I think)?  Gravity or pump?  Any tummy issues?  Do you cheat with food? If so are you selective?  Are you on Spinraza?  Any improvements?

    I’m 38 and got a feeding tube about 2 1/2 years ago after being hospitalized and they found contributing to my breathing issues was silent aspiration due to ineffective swallow muscles.  Wasn’t on my radar, but it did explain the inexplicable rattle now & then.

    Currently I do gravity feeds a couple times a day. I have a Mic-key tube now (long story).  I do cheat on occasion but try to keep it with food I think breaks down easily.  Would like to pursue Vital Stim to see if it would help in conjunction with Spinraza.

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