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Old 08-14-2009, 03:20 PM   #1 (permalink)
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Question Barium Swallow

Looking for a little advice. I had 2 prior barium swallow tests. One in 10/08 and one in 1/09 both were normal. I just had a third done today and was told that I need to thicken all liquids to a honey consistency with thickener. They said part of the fluids that I drink is going toward my lungs and that can cause an infection. I was amazed by the result, I may drink and eat slower but I did not think there was any problem with my swallowing until today. Can anyone fill me in on how the ALS is affecting me? And what I should be looking out for. My doctor wants me to get a peg so I guess it maybe time?

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Old 08-14-2009, 04:00 PM   #2 (permalink)
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Hi Serenade, did they show you the movie of your swallowing? Both times that i had that test they showed me what was happening and explained it all to me. From what I remember when you swallow the air passage to your lungs is closed and everything goes into your stomach but with Bulbar ALS the flap (sorry, I don't remember the name for it) does not fully close and thin liquids like water, juice, milk and (oh darn) beer can get past it into the lungs and cause aspiration pneumonia. Thicker liquids don't tend to get past the flap. The last time I had a test about a year ago they also gave me the honey consistency recommendation. I was told that the only thing that I should be trying to drink un-thickened was water and even that only after I had thoroughly washed and brushed my mouth out so there were no left over food particles. The theory is if you aspirate pure water then there is not as much risk of pneumonia. I have installed bar type faucets in my house which allows me to drink water again because when I am bent over the water that I slurp out of the running water just seems to go down the right way not the wrong way like when \i try to drink out of a glass or bottle.

Since my last swallowing test I have gotten a PEG and the whole swallowing issue is for the most part bypassed. I still manage to force some food down my throat every day but it is a struggle and it really wears me out. So my recommendations are don't put off the PEG, eat very carefully and keep your mouth clean. And don't put off the PEG, it is easier to maintain weight than regain it. Oh, and don't put off the PEG.

Something else as far as thickener is concerned, the crap (Thicken-up, etc) that they tell you to use to thicken foods has no food value at all. There are things like potato flour that work just as well and do have food value. Just my personal opinion.
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Old 08-14-2009, 05:56 PM   #3 (permalink)
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Barry,
That was a really good explanation, boy this thing just keep's on working us over. I cannot wait for a cure...
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Old 08-14-2009, 05:57 PM   #4 (permalink)
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Barry thanks for the tip about potato flour. Is it the potato flour you use or the potato starch? Either one is brilliant! This could change everything, as far as using those gross drink supplements my husband uses.
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Old 08-14-2009, 06:50 PM   #5 (permalink)
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Barry,

Thanks so much for explaination of my swallowing issue. It all makes more sense now. I do plan to get the peg put in when I return from vacation in September. I am also going to be on the Ceftriaxone trial in September as well. The potato flour is a great idea does anyone have any other idea's? The thickener is gross! I can see myself not drinking anything to avoid drinking it. I was disappointed when she told me ice cream is a no no because it melts. It is really hot today and a milk shake would be great however I would need to add the gross stuff to it. I assume yogurt is ok? Maybe I could whip up something fun using it. Thanks again!
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Old 08-14-2009, 06:56 PM   #6 (permalink)
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I have used potato flour in my morning smoothie to thicken it up and it is really effective. My smoothie is 2 large glasses and 2 teaspoons of potato flour takes it from being way too thin to being just right like a thick milkshake. I haven't tried it in anything else yet so I can't talk about the taste in anything else but the package said that it was good for thickening soups, sauces and gravies.

I went out and bought a large can of Thicken-Up after being told by the dietitian and speech language pathologist that I could use thickened water to wash down food. I tried it once with water, once with juice and it was so awful that I said "forget that, I'll use yogurt instead to help me eat, at least it is real food"
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Old 08-14-2009, 07:40 PM   #7 (permalink)
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I am going shopping tomorrow and getting some potato flour and giving it a try. I have a Jack Lalane juicer that makes really thick juice i'll add some potato flour and see how it works. Seems potato flour would be alot cheaper too! Thanks again
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