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#1 of 10 Old 12-30-2010, 05:55 AM - Thread Starter
 
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I posted here last week with difficulties I've had finding an adequate thickener for DS. I've been using rice cereal for the past few days, based on your suggestions. Very long story, but not all his liquids were thickened over the past week and he was diagnosed with pneumonia yesterday. It's the first time he was diagnosed with pneumonia since we found out he was aspirating and started thickening his liquids.

 

I just received an email from his swallowing specialist about this, and she said that based on what she observed during her last visit, she thinks DS might be aspirating his saliva when he eats hard foods. (She didn't say which ones.) I have no idea why she didn't mention this then as I would have stopped hard solids if I knew. We had been encouraged to give him lolipops to help with his oral aversions, but now I'm thinking that if he aspirates his saliva, lolipops are the absolute last thing he should have.

 

I can't imagine having spent all that time getting DS to eat certain foods only to have to take them away now because they're not safe. Arggh!

 

DS is starting to eat a lot more solids (he was on only liquids until a few months ago) and we've been encouraged to give him as much a variety as he will take. But now I'm worried that not all solids are safe for him, and I'm not confident his specialists are being as proactive as they could be. His 1 x week SLP hasn't done any feeding work with him for a month; she's been emphasizing upper body strength, but not spending time eating with him. I can't always hear the congestion the specialists can, so I can't always judge whether something is safe for him. I'm feeling desperate for more/better help.

 

If your child aspirates are there any solids you also avoid?

 


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#2 of 10 Old 12-30-2010, 07:49 AM
 
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My son aspirates and always has. He failed all consistencies so he's been tube fed since he was 3 months old and we found out. He is now 4 and gets J feeds. The aspiration has changed a bit over the years. We did a swallow study not too long ago but instead of focusing on his actual swallow, we tested to see if he could chew food up and spit it out and if that would be safe. He really wants to eat, so that was our compromise.

 

The food in saliva thing can still be an issue though. There are certain things that we avoid for that reason. He's not pneumonia prone, but he gets a chronic cough if something he can't handle goes down. He's usually fairly good about saliva (but had a lot of issues with that when he was a baby), but sometimes it's still a problem. What we avoid is first and foremost, fatty dairy. This is what is going to cause pneumonia easiest. Fatty lipids are what they find in the lungs when they do a wash. So he's not supposed to have dairy or anything very fattening. This probably isn't an option for you guys since he's oral. We also avoid anything that is oily or buttery, and things that are bready or crumby because they crumble and get into the saliva in larger amounts.

 

Some perfect things to chew and spit are dried fruit, meats, beef jerky, apple (but he has to spit very very well to get the chunks out), and fruit snacks. The way I first tried things out was to chew stuff myself and pay attention to what stuck in one glob or what broke up and spread out. My son can't make or manage a bolus and his swallow is delayed and disorganized, so when stuff gets spread out over the mouth he is at a much higher risk of aspirating it. If you chew a mouth full of rasins, you'll still get some of the juice mixed in with your saliva but the particles all stick in a glob and he can spit it all out easily. Since we drain his stomach, we can see what goes down and what doesn't. By far meats are the best for not getting juice or particles down.

 

I've noticed that there are things (like suckers that you mentioned earlier) that seem to thicken his saliva and make it more sticky and he just can't manage it. If you have a crackerbarrel near you, they have these HUGE jaw breakers on a stick. Those are more dry and so large you can't fit them in your mouth. We let him lick on those every now and then and they don't seem to make him have the same problem that normal suckers do. If he does have a normal sucker, my rule is that they don't go in the mouth, the tongue goes out to meet the sucker. If he puts it in his mouth it just really increases that thick sticky saliva and it makes him get that cough and junkiness.

 

Do they know why he's aspirating? Does he have dysphagia or just aspiration? How old is he?

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#3 of 10 Old 12-30-2010, 08:03 AM
 
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My DD used to aspirate on apples and thick doughy bread - like pizza crust.  Oh, and fries - particularly overcooked ones.  Try keeping a food journal.  

Fun times.  She is over it now (she just turned 8) - and has been for years, but the first four years of her life were not the easiest.

 

She also did poorly if people smoked, or she had to bee cooped up in cars/planes for long period of times.  I do not think this is related to the aspiration issues - but I think the repeated pneumonias did a job on her lungs, and she could not handle the poor air quality in cars/smokers homes.

 

She also had lousy baby teeth due to the aspiration and antibiotics, I think.  Wash those baby teeth well!  (It might not help, but it cannot hurt)

 

I really need to say she is doing just fine now.  I no longer even have to write down that she aspirates food - it is an issue of the past. Her baby teeth are all fixed, many adult teeth are in, and she can eat exactly what she wants.  She is still a little prone to pneumonia (It has been a year since her last bout!  Woohee!)  and we use inhalers at the first sign of congestion so it does not turn into pneumonia.  I do not think it is due to aspiration any more - she simply  is prone to it due to all the times she had pneumonia

 

I do not want to give you false hope - but sometimes kids really do outgrow some of these issues as the esophagus get a little larger.

 

I thought this was a really interesting read (wish I read it when DD was younger).  There is stuff on feeding if you scroll down.

 

http://www.new-vis.com/fym/papers/p-feed9.htm

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#4 of 10 Old 12-30-2010, 08:29 AM
 
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A couple of thoughts--if he wasn't yet eating solids when you did the swallow study, you might want to do another and go through some different solid textures to see what he is doing with them.  In general, foods that "stick together" are better than foods that break apart because they form a bolus on their own with less effort/ability.  You can help foods be gummier and stickier by how you combine them in a bite.  So instead of just a bite of hamburger, mix it with mashed potatoes and gravy, for example. Gravies, velveeta cheese (I know, but it makes a beautiful gummy bolus out of lots of things!) gummy (Korean or Japanese) rice and mashed potatoes were my favorites to improve food textures.  Breads can be a problem, as can crackers, meats without gravies, nuts, chips, raw fruits and veggies, etc.  We did have to avoid suckers and such for a while, as ds aspirated his saliva and secretions (still does sometimes at night or if he has a cold).  I also overcooked his veggies and steamed all fruits or used jarred/canned only for a while. 

 

When introducing new foods/textures, I did just a few very small bites.  Look at how he seems to handle it (is he happy, or sputtering and eyes red-rimmed and watery?), look to see after each bite how much is left in his mouth (is he forming a good bolus or is is just left there to fall down his throat randomly?), have him talk after bites (does his voice sound normal or wet and gurgly?).  In our case, the swallow study showed that ds could handle the first vew bites of most textures ok, but his swallow would quickly become disorganized and unsafe.  So we fed him in 1-2 tbs increments every couple of hours, reading his cues as to when he was starting to have trouble. 

 

For reference, he was adopted at 1 y with a history of frequent wheezing and colds (that was probably actually aspiration pneumonia), no mention of swallowing issues.  He was dx with dysphagia at about 17m, having aspirated or penetrated all thin liquid swallows.  He was not yet eating any solids, except for some snack puff type things and single grains of rice.  Everything else he spit out (in hindsite, probably a defense mechanism from having previously aspirated), and appeared to have some decent tongue thrust issues (like when a 4-6m old gets solids too early and the tongue pushes out the food instead of pulls it back).   2 years after diagnosis, he can eat most solids, in reasonable but small frequent amounts.  We still avoid obvious break apart foods, though.  He can drink a small amount of unthick water--about 1-2 oz (and a few sips of milk at lunch) but otherwise we thicken his milk at night with cereal.  We taught him to manage his swallow better with tiny little sips using a straw (called the pinch sip technique) and now he can take tiny sips from a cup; does it automatically in fact, as that was how he learned to cup drink so doesn't really know any differently.  Our rule for any liquid or food is two coughs or wet voices, and we take it away.  When he is tired or sick, we are much more hypervigilant about textures and thickening and he has to consciously focus to be safe.  By doing this, he has only had 1 case of pneumonia in 2 years, and that was when we initially started drops of thin liquid and I pushed it too quickly (realized it when he was coughing and sputtering past my comfort level and then pneumonia a few days later).

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#5 of 10 Old 12-30-2010, 08:30 AM - Thread Starter
 
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Originally Posted by MotherWhimsey View Post

My son aspirates and always has. He failed all consistencies so he's been tube fed since he was 3 months old and we found out. He is now 4 and gets J feeds. The aspiration has changed a bit over the years. We did a swallow study not too long ago but instead of focusing on his actual swallow, we tested to see if he could chew food up and spit it out and if that would be safe. He really wants to eat, so that was our compromise.

 

The food in saliva thing can still be an issue though. There are certain things that we avoid for that reason. He's not pneumonia prone, but he gets a chronic cough if something he can't handle goes down. He's usually fairly good about saliva (but had a lot of issues with that when he was a baby), but sometimes it's still a problem. What we avoid is first and foremost, fatty dairy. This is what is going to cause pneumonia easiest. Fatty lipids are what they find in the lungs when they do a wash. So he's not supposed to have dairy or anything very fattening. This probably isn't an option for you guys since he's oral. We also avoid anything that is oily or buttery, and things that are bready or crumby because they crumble and get into the saliva in larger amounts.

 

Some perfect things to chew and spit are dried fruit, meats, beef jerky, apple (but he has to spit very very well to get the chunks out), and fruit snacks. The way I first tried things out was to chew stuff myself and pay attention to what stuck in one glob or what broke up and spread out. My son can't make or manage a bolus and his swallow is delayed and disorganized, so when stuff gets spread out over the mouth he is at a much higher risk of aspirating it. If you chew a mouth full of rasins, you'll still get some of the juice mixed in with your saliva but the particles all stick in a glob and he can spit it all out easily. Since we drain his stomach, we can see what goes down and what doesn't. By far meats are the best for not getting juice or particles down.

 

I've noticed that there are things (like suckers that you mentioned earlier) that seem to thicken his saliva and make it more sticky and he just can't manage it. If you have a crackerbarrel near you, they have these HUGE jaw breakers on a stick. Those are more dry and so large you can't fit them in your mouth. We let him lick on those every now and then and they don't seem to make him have the same problem that normal suckers do. If he does have a normal sucker, my rule is that they don't go in the mouth, the tongue goes out to meet the sucker. If he puts it in his mouth it just really increases that thick sticky saliva and it makes him get that cough and junkiness.

 

Do they know why he's aspirating? Does he have dysphagia or just aspiration? How old is he?


This is so helpful, so much more information than I've ever been given by anyone! We're not sure why he aspirates. He has dysphagia with a both a poor chew and disorganized swallow. His only other diagnosis is low muscle tone so the thought is that the eating and swallowing difficulties are low muscle tone related.

 

 



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Originally Posted by kathymuggle View Post

My DD used to aspirate on apples and thick doughy bread - like pizza crust.  Oh, and fries - particularly overcooked ones.  Try keeping a food journal.  

Fun times.  She is over it now (she just turned 8) - and has been for years, but the first four years of her life were not the easiest.

 

She also did poorly if people smoked, or she had to bee cooped up in cars/planes for long period of times.  I do not think this is related to the aspiration issues - but I think the repeated pneumonias did a job on her lungs, and she could not handle the poor air quality in cars/smokers homes.

 

She also had lousy baby teeth due to the aspiration and antibiotics, I think.  Wash those baby teeth well!  (It might not help, but it cannot hurt)

 

I really need to say she is doing just fine now.  I no longer even have to write down that she aspirates food - it is an issue of the past. Her baby teeth are all fixed, many adult teeth are in, and she can eat exactly what she wants.  She is still a little prone to pneumonia (It has been a year since her last bout!  Woohee!)  and we use inhalers at the first sign of congestion so it does not turn into pneumonia.  I do not think it is due to aspiration any more - she simply  is prone to it due to all the times she had pneumonia

 

I do not want to give you false hope - but sometimes kids really do outgrow some of these issues as the esophagus get a little larger.

 

I thought this was a really interesting read (wish I read it when DD was younger).  There is stuff on feeding if you scroll down.

 

http://www.new-vis.com/fym/papers/p-feed9.htm

 

How can you tell she's aspirating at the time? Coughing? I think a lot of DS's aspiration is silent so if he's aspirating on his saliva I'm not sure how I'd know.

 

My DD has a nebulizer for reactive airways; I'll check with DS's doctor to see if she thinks DS would benefit from a treatment at the beginning of colds.

 

And thanks for the link, I will check that out.


 


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#6 of 10 Old 12-30-2010, 08:56 AM
 
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In our case, DD would make this noise like she was choking. It was fairly loud.   Her aspirations were not silent, which is good, because at least we could figure out which food were not OK.  

 

I am ashamed to admit I pounded on her back when she choked (I was panic stricken and did not know any better) but this just caused more crying, which probably ended up with more food in her lungs as she would actually aspirate them in as she screamed.  I am not sure of the link - ask your doctor, but I am pretty sure kids are to be kept calm when eating to avoid aspiration.

 

In later years I learned to put my hand on her back to feel her lungs - feel if they were clear, or if they were rattly.  This is not aspiration related, but more related to knowing whether something was going on in her lungs. 

 

Lasting, DD definitely had a pneumonia season - and it was Late Fall, Winter, early Spring.  Probably the same as the rest of us.  If you or your DH want to experiment with food (and lets face it - you will - the goal is them eating normally and being healthy) do it during calm, healthy times of year.

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#7 of 10 Old 12-31-2010, 01:42 AM - Thread Starter
 
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Quote:
Originally Posted by kathymuggle View Post

In our case, DD would make this noise like she was choking. It was fairly loud.   Her aspirations were not silent, which is good, because at least we could figure out which food were not OK.  

 

I am ashamed to admit I pounded on her back when she choked (I was panic stricken and did not know any better) but this just caused more crying, which probably ended up with more food in her lungs as she would actually aspirate them in as she screamed.  I am not sure of the link - ask your doctor, but I am pretty sure kids are to be kept calm when eating to avoid aspiration.

 

In later years I learned to put my hand on her back to feel her lungs - feel if they were clear, or if they were rattly.  This is not aspiration related, but more related to knowing whether something was going on in her lungs. 

 

Lasting, DD definitely had a pneumonia season - and it was Late Fall, Winter, early Spring.  Probably the same as the rest of us.  If you or your DH want to experiment with food (and lets face it - you will - the goal is them eating normally and being healthy) do it during calm, healthy times of year.

 

Sometimes I hear a cough, particularly when he drinks water, but not often with food. His specialists can hear congestion in his voice and I listen and listen and listen and can't hear it. (Maybe this is why I never got too far with music in high school.)

 

That's good advice about doing more experimenting during healthy seasons than the winter. DS is waking gotta go.
 


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#8 of 10 Old 12-31-2010, 07:33 AM
 
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Quote:
Originally Posted by Wild Lupine View Post

 


 

Sometimes I hear a cough, particularly when he drinks water, but not often with food. His specialists can hear congestion in his voice and I listen and listen and listen and can't hear it. (Maybe this is why I never got too far with music in high school.)

 

That's good advice about doing more experimenting during healthy seasons than the winter. DS is waking gotta go.
 

You might be able to feel it.  I can feel congestion more than hear it.  Put your hand on his back.  Non congestion feels smooth - congestion feels rattly.  I do not know if this will work when aspirating foods - but it is worth a shot.
 

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#9 of 10 Old 12-31-2010, 07:46 AM
 
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Quote:
Originally Posted by Wild Lupine View Post


 

Quote:
Originally Posted by kathymuggle View Post

In our case, DD would make this noise like she was choking. It was fairly loud.   Her aspirations were not silent, which is good, because at least we could figure out which food were not OK.  

 

I am ashamed to admit I pounded on her back when she choked (I was panic stricken and did not know any better) but this just caused more crying, which probably ended up with more food in her lungs as she would actually aspirate them in as she screamed.  I am not sure of the link - ask your doctor, but I am pretty sure kids are to be kept calm when eating to avoid aspiration.

 

In later years I learned to put my hand on her back to feel her lungs - feel if they were clear, or if they were rattly.  This is not aspiration related, but more related to knowing whether something was going on in her lungs. 

 

Lasting, DD definitely had a pneumonia season - and it was Late Fall, Winter, early Spring.  Probably the same as the rest of us.  If you or your DH want to experiment with food (and lets face it - you will - the goal is them eating normally and being healthy) do it during calm, healthy times of year.

 

Sometimes I hear a cough, particularly when he drinks water, but not often with food. His specialists can hear congestion in his voice and I listen and listen and listen and can't hear it. (Maybe this is why I never got too far with music in high school.)

 

That's good advice about doing more experimenting during healthy seasons than the winter. DS is waking gotta go.
 


I know when my son has aspirated some because he gets a chronic dry cough. But before the cough sets in, sometimes it makes his chest junky and wet sounding. He also clears his throat a lot. He's always been a silent aspirator unless his entire airway was blocked by something.

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#10 of 10 Old 12-31-2010, 11:11 AM
 
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If your child can talk or vocalize on request, try having them say "Ahhh" randomly during the day (when he is likely to not be aspirating) and then in between swallows when he is eating/drinking, especially if you are pretty sure he aspirated some to get used to the difference in the way it sounds.  You can often hear a gurgly "wet" sound to it.   The wet sound suggests that they may have aspirated or penetrated the laryngeal space.  Although, there are some studies that show hearing wetness is not super sensitive way to measure this.  I was trying to find some sound clips, but coudln't find any, sorry.  I will keep looking.  BTW, if you do hear the gurgly sound, have them cough and repeat the "Ahhh" sound until it is clear before giving them anything else to eat or drink.

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