[preemiemamarach]

I hope i can be thorough but my boss is skulking around, so this may be piecemeal.

L had a swallow study done at 8 months at the hospital we now hate (and no longer use). He passed, although they noted 'some nasopharyngeal regurgitation' at the time. He was only taking thin liquids and stage 1 thin purees, so we didn't go beyond that during the study. he has had every other workup known to man since, and his feeding has never progressed (he still chokes and gags on meltables- he successfully ate a banana in the hospital and I almost wet my pants).

He does not chew at all, and he has intermittent facial droop on one side. His tongue only moves to one side of his mouth, it finally goes to midline but didn't for most of his life. when he drinks thin liquids from a straw or cup, 9 out of 10 sips run back out of his mouth. He ate the banana by taking tiny bites and swallowing them without chewing. He gagged and needed me to fingersweep a few times, but he took tiny bites when I told him too. I do think we could have some success with trying real food now because his comprehension of instruction is really high, and he follows direction very well.

When he takes his formula (only formula and water for liquids), he gags and coughs after about an ounce almost every time. He only takes an ounce or two at a time unless he is alseep or nearly asleep (he still coughs, though). He has chronic nasal congestion and rancid breath.

The OT we saw in the hospital this week thinks he may be aspirating and has lost the ability (or never had the ability) to move his tongue properly to manipulate food boluses and close his airway. She thinks he's aspirating. Since his immune deficiency seems to be worsening instead of improving (his IgG went down significantly based on labs this weekend), I am really concerned about aspiration leading to lung issues, which we have thankfully never had (he had pneumonia once and RSV once, though neither required a hospital stay). We live at nearly 10,000 feet elevation, so any compromise in his lungs will be even harder to overcome.

So- for those of you with kids who aspirate (especially those with atypical presentation)- what are your thoughts? What should I be looking for? Does a repeat swallow sound like the right step here? The neuro we saw said of his speech, 'maybe it's apraxia of speech', which seems a bit too nebulous when the kid has obvious motor dysfunction with eating. He is going to start refusing the formula at some point (it seriously tastes like a cleaning agent), and while I am okay with getting a g-tube if we need to (still haven't made a final decision with his gastro), i would hate to discontinue oral feeds if he can tolerate *some* food. He is obviously very interested in trying to eat now, and I would love to let him have that experience if we can do it safely.

We will be getting OT added to our PT and ST weekly (they finally hired an OT here!), and I know apraxia is treated with ST and OT- but I just think there's something going on with his oral motor function and I don't want to have him chronically aspirating on chunks of food, KWIM?

 

[MotherWhimsey]

I'd do another swallow study just to be safe. You might also learn a lot about how his oral function is and what needs work so that speech is possible.

The problem you're going to run into if he's aspirating on thins but not thickened is that pretty much all of the thickeners have stuff that he's allergic to in them. So I don't know how you'd be able to thicken. There may be some that he could have, but I have no idea.

But basically, it can't hurt to have the info a swallow study could give you, you know?

 

[pixiekisses]

Yeah, I'd do a swallow study too. Our little miss cotton ball button's lungs got so much worse from bad aspiration discovered way too late. We did the gtube at once and the problem was solved (she needed the gtube anyway from not eating and loosing weight etc.). Now it looks like it's back, probably from volume-reflux, and she's on gaviscon to see if that helps while we figure out what to do.

 

[ksera05]

Quote:

Originally Posted by MotherWhimsey I'd do another swallow study just to be safe. You might also learn a lot about how his oral function is and what needs work so that speech is possible. The problem you're going to run into if he's aspirating on thins but not thickened is that pretty much all of the thickeners have stuff that he's allergic to in them. So I don't know how you'd be able to thicken. There may be some that he could have, but I have no idea. But basically, it can't hurt to have the info a swallow study could give you, you know?

I totally agree.

Although, one thought - do you know if he's allergic to straight xanthan gum? That's the primary ingredient of Simply Thick and it does work to thicken, although you have to play with it a little more than the nice, convenient packets, heh.

 

[Stacymom]

My son has aspiration issues, but he's only five months old, so take it for what its worth.

Have you had a FEES study? They use a flexible endoscopic camera that they threaded through my sons nose, and posed it to look at his throat. They then died some liquids blue, and watched as he swallowed. Its like a barium swallow study, but instead of only showing aspiration/nonaspiration, it shows what is actually happening physiologically. I think in your case, this test might show in more detail what is actually happening rather than just actually saying "Yes, he's aspirating." In our case, it also showed that he had severe refulx, which they suspect is causing the aspiration. We were surprised at that because he never showed any of the typical signs of reflux. The theory is that getting the reflux under control will help the aspiration.

And yeah, we did a round of simply thick, and its almost straight xanthan gum+ cirtic acid if I remember right.

 

[Momily]

My son's experience with aspiration and a g-tube was very good. He was constantly sick as an infant. Even on every asthma medication available at the time, round the clock nebulizer treatments, constant oral steroids and maintenance antibiotics he struggled every day. Eventually we did a swallow study and it showed enough penetration that the pulmonologist felt that he was likely aspirating and we put in a g-tube.

In retrospect I don't know whether he was aspirating on the swallow and the g-tube stopped it, or he was aspirating on reflux and the slower g-tube feedings reduced the reflux. Either way his breathing got slower and less labored, he came off many of the medications, and he had so much more energy for growing and developing. Throughout they allowed him to eat recreationally, and as he healed we gradually increased the quantity and variety he was able to have. Eventually we reintroduced thin liquids and he was fine.

As to what to thicken with -- when DS was finally "cleared" for thickened liquids we used baby foods and yogurt as his primary thickeners. I used to make "recipes" like apple juice thickened with apple sauce, or orange juice with mangoes or peaches. His special needs daycare used to throw any juice in with whateve baby foods they had on hand -- I'd get a note saying "He drank a big cup of prune juice with green beans today" (YUCK!) but he seemed to like it. Is there a baby food that your LO can handle?

As for today -- he's 10, tube free for 7 years, and a pretty healthy, typically developing kid. He eats a wide variety of food, and frankly a little too much of it (he could stand to lose a few pounds). He still has asthma and some mild chronic lung disease issues, but nothing like he might have had if we hadn't caught it early.

So, my vote would be to go ahead and do the test.

Good luck!

 

[irangel]

I'd try for another swallow study. Aspiration is such a tricky thing to deal with. In our case Dakota had some penetration in her early on swallow studies but she developed an oral aversion so quickly that we were never able to get a good clear look at how she swallowed. We knew she refluxed and aspirated (ie indirectly aspirated) but we had never proved or disproven any theory about her directly aspirating. She coughed and got choked up with eating periodicallly, not every time. She really just got gurgly when she ate but then she'd cough once or twice, clear the congestion and eat some more. that was the only indication we had that something might be wrong and obviously when we tried a study it was to no avail and so we just gave up.

We learned about the extent of her aspiration during her bronchoscopy. She has developed a permanent and progressive form of lung damage as a result of the micro and sometimes not so micro, aspiration that has been occuring on a chronic basis. She does not seem to have an oral motor problem, simply a paralyzed vocal cord, making it impossible for her to adequately protect her airway regardless of how hard she tries.

Eating something is better than nothing I totally agree. But you do want him to be safe so you don't invite more complicated problems into your lives. We're at the point now where Dakota's NPO entirely because we just can't get a handle on her lungs and need to see if NPO status will help to improve them.

Go for the study. Try and see what exactly is going on so that you can help deal with the issue and at the very least know what foods are safe and what aren't. Good luck!

 

[2bluefish]

We do the baby food or cereal as thickener thing too. For us with low weight gain being an issue, there's no reason not to thicken with something that adds nutrion. Our ST was getting a little concerned about aspiration the past couple weeks, but I think we figured out that Juju was just bored and not paying attention. We've been varying foods as well as feeding methods, and seeing good results. I figured out I can feed him a thin oatmeal fortified with all kinds of goodies with a cup (we use one of those with the nose cut out). I also got a hold of this book "Pre-feeding Skills" which is full of really helpful information (it's a textbook - so $$).