Tip on swallowing from my SLP

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KarenNWendyn

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Sometimes I have problems initiating a swallow. If I’m swallowing liquids, I often have trouble getting the first swallow going, but the subsequent ones are easier. If I take a pill, I put it in pudding, but the pudding-pill combo just sits in my mouth until I can get the swallow going.

I saw the SLP in clinic today and he suggested using a toothbrush to brush my lips and tongue before swallowing; that something about this tactile stimulation warms up the swallowing reflex.

I’ll try it tonight when I take my meds and let you know how it goes. Has anyone here tried this? I thought I’d pass along the tip.
 

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That's so brilliant! This was one of Chris's early symptoms - he would be racing around in the cafe, grab a bottle of water, take a swig and out it would spray as the swallow would simply not happen. Next sip, and rest of the bottle was fine. With EL however he would go into hysterics and that would be harder to get controlled.
I wonder if simply rubbing the lips, even with a towel would help. Please let us know how you go :unsure:
 

ReginaS

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Thanks for passing it along. We will try this out tomorrow. If it makes a difference I will update.
 

KarenNWendyn

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Now that I’ve tried it a few times, I can report that it does help a little. What also helps is taking an initial sip of water with my head tilted way forward. Also when I use pudding to take pills, arranging the pills in order from smallest to largest and starting with the smallest pill really helps a lot. There does seem to be something to “waking up” the swallowing reflex.
 

KimT

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I've experienced that and thought it was just anxiety. Thanks for the tips.
 

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thanks Karen for reporting that it helps but of course isn't perfect. Definitely being prepared for the first sip of any liquid became a huge thing for Chris from early. Even being mentally prepared helps a little, but the tactile 'wake up', and ordering the smallest pills first is smart :)
 

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You are at the point I was at that lead to getting a g tube. I still only use it for meds 2 1/2 years later. It takes away the anxiety that goes with being unable to initiate swallowing.
Vincent
 

KarenNWendyn

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You are at the point I was at that lead to getting a g tube.
I had a modified barium swallow study last week. It showed only some premature leakage of fluid before the swallow was initiated. No aspiration. Food tends to get stuck in the vallecula (now there’s a word for you 😀), and ironically I do better with liquids than solids. My SLP thinks the tube is coming but the need isn’t immediate. My CALS probably would agree with you Vincent.
 

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Karen can I just say that considering getting the tube as early as possible could be a smart move.

It is only minor surgery, however PALS are already on the uphill battle, so the longer you leave things, the harder it may be for your body to tolerate the procedure and recover quickly.

All I am saying is - if you think about being proactive with the g tube the same way we would talk about being proactive in preventing falls and using bipap, you are saving yourself energy and preventing incidents.

As you know, you can have a g tube in and not use it - but could use it to just crush and pop in those meds and then sit and enjoy to drink something nice. Quality :)

Maybe you don't need it today, but please don't leave the decision until you really need it, as it can take time to get the procedure organised and booked in.

Just sayin ....
 

Nikki J

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I agree with Tillie. If you are planning on one the sooner the better This is especially true if you have any breathing issues at all. My sister delayed after it was suggested. When she agreed it took three months to get one ( a combination of issues that included having to reschedule when she caught a cold). The minor surgery almost killed her and she had become so malnourished refeeding was difficult.

I know you are a long way from where she was but having it for meds now would be convenient and later it can be used to supplement food or fluids if you are tired
 

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It can also be surprising to discover you are just not taking in as much fluid as you need. Definitely, being a step ahead is the name of this strategy :)
 

KarenNWendyn

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Just as a followup, the technique of trying to stimulate my swallowing reflex with a toothbrush is not working for me, though it may work for some.

What is working is taking the pills in applesauce (even yogurt was getting to be problematic). In fact, sometimes if I start having trouble drinking water or having food getting stuck on the way down, a couple spoonfuls of applesauce seems to smooth the journey and allow me to swallow both food and water better.

I’m scheduled to have a G-tube placed by RIG on July 1. I’ll post followup on that in the PEG section of this forum. Meanwhile I’m experimenting with smoothies, thickeners, and applesauce. Thanks to this forum for all the tips, advice, and support. It has been invaluable.
 

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It seemed like such a good idea! We don't know why applesauce seems to be a good conduit for meds, but when something works you just use it. I am sure you will find so much relief once you get that RIG done and you can just enjoy by mouth what works and tastes great and get great hydration and loads of calories easily 💜
 

ReginaS

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The first swallow in particular seems harder than the rest for my pALS. It seems to get a bit easier after the first couple of times. Not that it is ever easy for him...
 
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