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Re: Swallowing/feeding update

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  • heidicoleman2002
    -Hi Darla I d be careful with ANY oral feeding. In fact, I d actually encourage you to focus on self-feeding rather than spoon feeding at this point. In our
    Message 1 of 3 , Aug 1, 2004
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      -Hi Darla
      I'd be careful with ANY oral feeding. In fact, I'd actually
      encourage you to focus on self-feeding rather than spoon feeding at
      this point. In our case, Heather opened her mouth to eat even if she
      was too tired to swallow, and we'd find baby food drooling out for a
      long time, plus in her nose. That didn't usually happen if we let
      her play with the food and control it herself. Plus, aspirating food
      could make her more defensive and could cause bigger problems.
      Heather does a better job taking tastes from a toothbrush than from a
      spoon. (I know, big "ick" factor seeing food on a toothbrush, but it
      works!)

      How frustrating for you. Does Zipporrah enjoy eating and drinking?
      We tried thick-it in juice and it was never a big hit. Are you
      feeding for nutrition or oral motor stim? Heather used to be
      on "tastes" and when I asked how much a taste was the OT told me 1/8
      to 1/4 of a teaspoon!

      Good luck
      Heidi, Heather's Mom
      www.caringbridge.org/ma/heather

      -- In Mito@yahoogroups.com, "Darla Klein" <honeybear50317@m...> wrote:
      > Zipporrah had a video swallow with an OT at Mayo yesterday and
      it
      > showed issues with liquids in particular. When swallowing liquids
      she would
      > hold it temporarily in her throat for approximately 3-5 seconds
      before
      > thoroughly swallowing it. The OT said that this could be a big
      potential
      > for aspiration problems. They also fed her applesauce which she
      seemed to
      > handle, but only did about tiny 4-5 bites and the OT wonders with
      fatigue,
      > illness, or etc. if the food could also be problematic. They felt
      she was
      > protecting her airway enough though with the applesauce that I
      could begin
      > to try feeding her some daily. The told me to stop if she began to
      cough or
      > gag much and also not to force her but only give her what she
      accepts
      > readily so she has some control over it since it is a scary issue
      for her.
      > WELL... last evening and this morning I tried to feed her
      Gerber first
      > stage Oatmeal with applesauce baby food and found that within 2-3
      bites both
      > times she started to cough and have difficulty dealing with it in
      her mouth.
      > This was a thicker consistency than she had during the swallow
      study and
      > now I am wishing they tried different textures and thicknesses to
      see how
      > she did with them. Also, last night she was coughing and more
      gaggy during
      > her sleep than usual and I am wondering how safe it really is for
      her!
      > I plan to discuss this with her GI and physiatrist as well at
      the OT
      > that did the study to let them know what she is doing to see how
      safe it is
      > or to find out what types of baby foods to try other than
      applesauce. (I
      > know it is thinner than what we used for sure!) But then liquids
      are hard
      > for her too, so it seems like there may be a fine line of safety
      versus
      > dangerous for her!
      >
      > Darla: mommy to Asenath, Zipporrah, Luke, Leah, Rachael, Isaac,
      Tirzah,
      > Kezia, and Marquis
      >
      >
      >
      > Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes,
      migraines,
      > seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays,
      asthma
      > Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach
      issues,
      > disautonomy, hypo & hypertonicity, migraines
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