Special Needs

ENT- Swallow Study results

Today was a long day- but Aiden was a trooper!  No improvement with swallow study (still aspirating on thin and deep penetration on nectar).  :( Still hoping with practice drinking thin liquids that there will be improvement. After swallow study we met with ENT.  He was concerned that Aiden had another recent ear infection and had his hearing checked. He passed hearing test with flying colors.  He said that since he looked good today we could wait a bit before putting tubes in ears- but he wants to within the next few months.  He also said in the near future he wants to repeat the pH impedance probe to check his reflux.  He gave us results from sleep study last week- showed central sleep apnea.  He referred us to pulmonologist (we go in a few weeks.)  I am about to do another post with apnea questions.

Good news: Aiden took his first few sips from bear straw cup and open cup!  

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Re: ENT- Swallow Study results

  • Glad to hear everything was okay with his hearing. It sounds like you've been really busy with lots of tests! 

    So Aiden penetrates on thickened liquids, but they've allowed you guys to practice with thins? I've been confused about this. Because DD had deep penetration on two different thicknesses (I think honey and nectar?) and aspirated without the thickner, but we were told we weren't allowed to practice any drinking. In my mind, I'm thinking "practice makes perfect" and if we don't practice we're never going to get better. But they made it sound like I'd be putting her life in jeopardy to try liquids at all. . . I've even asked about straws (which are much harder to get liquid from anyways) and that's a no-go. Didn't mean to hi-jack your post, I've just been very confused about that lately.

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  • imageMummyGruetzie:

    Glad to hear everything was okay with his hearing. It sounds like you've been really busy with lots of tests! 

    So Aiden penetrates on thickened liquids, but they've allowed you guys to practice with thins? I've been confused about this. Because DD had deep penetration on two different thicknesses (I think honey and nectar?) and aspirated without the thickner, but we were told we weren't allowed to practice any drinking. In my mind, I'm thinking "practice makes perfect" and if we don't practice we're never going to get better. But they made it sound like I'd be putting her life in jeopardy to try liquids at all. . . I've even asked about straws (which are much harder to get liquid from anyways) and that's a no-go. Didn't mean to hi-jack your post, I've just been very confused about that lately.

    Aiden wasnt allowed to drink thin liquids until after his laryngeal cleft was repaired.  Now that it is repaired we are trying to get him to learn to drink thinner liquids.  I should clarify- his thin liquids are still thickened (bw thin and nectar consistency.)  But, it is under direction of his SLP.  We practice with one bottle a day.  The hope is that with practice his swallowing will get better. Our SLP didnt think he was ready for a straw- but I took one to swallow study and they let him try it on nectar and he did great!  From my experience (and teaching students with multiple disabilities with swallowing problems) it depends on the situation, reason for aspiration, and the SLP/doctors involved.  Some are much more cautious about allowing kiddos to drink thin liquids.  Also, the reason (if known) may play a part- also if the child has had a lot of respiratory problems related to aspiration. Aiden luckily has never had pneumonia etc caused by his aspiration.  Hope this helps!  GL! 

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  • Plus, if you ever trying something questionable (ie: thinner than you are supposed to) use water! There is a little bit of water in your lungs to begin with and your body just reabsorbs it, so if you are going to aspirate, you are MUCH less likely to get an infection if it is just water vs sugary juice or milk. Many SLP's/docs will actually endorse having as much thin water as you want but thicken everything else.... food for thought!
    image Aiden Jude is on his way! Pregnancy Ticker
  • imageGreenEyesinNC:
    Plus, if you ever trying something questionable (ie: thinner than you are supposed to) use water! There is a little bit of water in your lungs to begin with and your body just reabsorbs it, so if you are going to aspirate, you are MUCH less likely to get an infection if it is just water vs sugary juice or milk. Many SLP's/docs will actually endorse having as much thin water as you want but thicken everything else.... food for thought!

    Wow!  No one has ever told me that!  Thanks for the info!  

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  • I wouldn't do a ton but a little here and there likely wont' hurt him, especially if he's kind of close to passing and already on nectar. Maybe just a few sips a day....
    image Aiden Jude is on his way! Pregnancy Ticker
  • imageGreenEyesinNC:
    I wouldn't do a ton but a little here and there likely wont' hurt him, especially if he's kind of close to passing and already on nectar. Maybe just a few sips a day....

    Yeah I will ask his SLP when she comes tomorrow.  Doc still wants his "practice" thin liquids to be partially thickened (1/2 way bw thin and nectar.) I have tried water before (only in sippy cups.)  Will have to see what she says about that- good to know!!  :)  

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