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Topic: What kind of doc for swallowing?

03-01-2006 09:45 AM



ldrake
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Leah and others, as you may recall, we are considering a feeding tube for Ryan. It has been determined that he aspirates while eating, but the strange thing is that he hasn't suffered any harmful effects from it, e.g., he's never had pneumonia.

I am actually at a loss as to what kind of doctor to see about Ryan's swallowing issues. I want to try something called vital stim therapy, but our ST has never heard of it. Do we see an ENT? A GI doctor? Help!

Thanks,
Lauren

03-01-2006 09:54 AM



azvalerie
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Location: Phoenix, AZ
Registered: Mar 2004
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Last visit: 03-24-2006

Lauren,

Jaymes has aspirated his whole life - he's 2.5 now. Has had pneumonia only once and that was from RSV - otherwise, he silently aspirates, but never had "harmful effects" either. His first barium swallow was done when he was about 6 months old. Last October, we tried Vital Stim therapy. Unfortunately for us, it didn't work. It happens. Works for some, not for others. I would definitely try it. It is hard to find someone who is certified to perform the VS therapy. We happened to luck out, however, our local children's hospital said they had a speech therapist who was certified and there was one other ST at another hospital that they knew about. The gal who did Jaymes' VS therapy is also his feeding therapist. She works with him now on eating properly and oral motor issues.

As for the doctor, we saw a pulmonologist (the lung doctor). He performed a broncoscopy to determine if the liquids were actually getting into his lungs (they weren't). So actually, Jaymes penetrates, but doesn't always aspirate. That's a good thing.

Let me know if that helps or you have further questions. I'll be happy to help if I can.

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Proud mommy to Jaymes Xavier 6/4/03
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03-01-2006 09:58 AM



ldrake
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Ooh, Valerie, I'd love to talk to you more. So it sounds like you did not go the feeding tube route, right? Who prescribed the vital stim and other feeding therapies? Was it the pulmonologist?

Thanks,
Lauren

03-01-2006 11:35 AM



naomid
Super Member

Location: California
Registered: Apr 2003
Posts: 2809
Last visit: 03-24-2006

Lauren,

Here's a website that allows you to search for a provider who does vital stim therapy http://www.vitalstim.com/BullseyePro/search.asp?section=patient

I have no experience but good luck
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03-01-2006 12:03 PM



raeanncollins
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Location: Illinois
Registered: Mar 2005
Posts: 274
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We actually heard about V-Stim therapy from our speech therapist. Sam was already to go but then we moved and no one in our area does it. However if Ryan aspirates I don't know of V-stim will help. V-stim is to help with oral coordination, swallowing, breathing and getting everything to work in the proper order...but once it is down the tube I don't think it will stop the aspiration. Sam had to have a swallow study to determine that he was not aspriating(I actually had to submit a video of his swallow study to get him approved for v-stim), a letter from his pulmonologist and from his ped before Sam could even get on the list for v-stim. His pulm. (although thought is was a good idea) would not agree to it if he was still aspirating...he said v-stim helps make swallowing more effective and if Sam was still aspirating a more effective swallow would just allow him to aspirate more effectivly.

I could be wrong but Ryan might not be able to get V-stim if he is aspriating????? HOwever you might want to look into listening therapy (again something we lost out on when we moved). Listening therapy helps with getting the body to work well with itself, breathing, digestive issues, balance and all sorts of things. The questionaire is very long (like 12 pages) and the therapy is tailored to your child to target the issues that they have. I think listening therapy has lots of applications but I thought it was a great idea for Sam because the seizures and perhaps could help his body reconnect with his brain. Listening therapy was reccommended for Sam mostly due to GI, and respiratory issues and his ST thought that once those two systems started playing nice oral feeds and swallowing would follow naturally. LIke I said we never actually got to try these therapies out but they seemed to have lots of perks
rae
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03-01-2006 12:52 PM



ldrake
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Wow, thanks Raeann, I guess I don't understand this as well as I thought I did. Yes, Ryan is aspirating. That's been determined by a swallow study. But I thought that meant that he was just swallowing wrong, i.e., food is going down the wrong tube. So I thought a "swallow therapy" would help him. It sounds like you're saying that the aspiration occurs AFTER the swallow?

Thanks again,
Lauren

03-01-2006 01:20 PM



azvalerie
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Location: Phoenix, AZ
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Lauren, I sent you a PM!
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Proud mommy to Jaymes Xavier 6/4/03
& Baby #2 - EDD 5/15/06

03-01-2006 02:21 PM



raeanncollins
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Location: Illinois
Registered: Mar 2005
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Last visit: 03-24-2006

That was my understanding but don't just take my word for it...it might be that he is swallowing wrong (not breathing at the right time) but I think they can tell on the swallow study...did you get a copy of his swallow test?. I just know that for Sam we had to show proof that he was no longer aspirating to get him into the v-stim program. Also Sam's aspiration issue was not caused by the fact that he was not swallowing correctly (even though he wasn't) it was caused by the little flap(can't remember what it is called) that covers airway when you swallow or opens when you breath. Basically it was not "sealing" or working properly...they told me it looked like it was just flapping in the wind and not really doing anything or perhaps it could be spasming???...so if the flap didn't seal when he swallowed the food would just slide down the wrong path and into his lungs(you could actually see this happen on the video). Even if Sam was able to swallow properly this little flap was not doing its job...So it was my understanding that V-stim could help the suck, swallow , breath (oral coordination)part but not make the little flap work right. Does that make sense??? Sorry if I sound so vague. Let me know what you find out...
rae
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03-01-2006 02:22 PM



always_chaos
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There is a bit of a difference between what is aspiration and true penetration. Penetration is what generally causes pneumonia, as the substance makes it into the lungs. For many children it only makes it around the vocal cords and not into the lungs their selves. There is no true way to know how far something get without the barium swallow study, which it sounds like he had. Most times aspiration occurs when they swallow incorrectly allowing the food or drink into their airway rather than their stomach. It does not necessarily happen all the time or with every swallow.

Did they tell you if there was penetration? That may aid in determining why he has not had pneumonia.
My daughter does not cough on her own and makes no attempt most times to remove substances from her airway so the junk just gets into her lungs-then causing pneumonia.

Does he have any other conditions such as tracheal malacia, bronchial malacia, laryngeal malacia, or subglottic stenosis? My daughter has all four of these conditions and asthma on top of that. If he has any of these, they could also be a factor as the airway is then floppy and less likely to function correctly.

My daughter has aspirated her whole life. We thicken all liquids with a product called Thick It. She has officially had aspiration pneumonia five times since birth. We do not get OT for this problem and never have in either Iowa or Michigan as they say she does not qualify. Although, it sounds like many others do. We have an appt. with Children's mid-month and she will hopefully get a referral to speech, paid for by private insurance then. I had never heard of the v-stim that has been mentioned it sounds like it would be helpful.

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03-02-2006 05:30 PM



fee
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Location: tullyallen r.o.i
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Sean Aspirates 2
Hi there, My son sean 14 months aspirates too and I use a carabel thickner which I have to say has worked as he was in and out of hospital with chest infections etc. We have an airways consultant who has done a number of videofloscopy plus barium swallows etc. Sean as well as using thickners also is on Zantac which is for heartburn and acid as his airways pipe was 41% smaller than the average baby at six months old. I would suggest to your consultant that you would like to try other ideas before you go down the peg or Tube feeding route as special needs kids loose their skills for eatings etc so quickly and if it doesnt work than at least you know that you have tried alternative routes. Good Luck
Fiona Mam to Sean 14 months and wife to Peter (the hunk)

03-03-2006 12:11 PM



raeanncollins
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Location: Illinois
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always chaos (great definition by the way)
ahhhhh maybe that is why Sam was not able to have V-stim without a swallow study...he did have penatration and was hospitalized with pneumonia several times(and was actually NPO because of it). Sam's pulm. called it silent aspiration (no coughing or gagging...it just slipped right down).

Soooo Lauren maybe Ryan could get v-stim even with aspiration as long as food stays out of his lungs???? Let us know what you find out.
rae
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mom to Andrew the Destroyer(11.24.01) and
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~slow and steady wins the race!

03-03-2006 02:39 PM



always_chaos
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Location: Detroit Metro, MI
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Last visit: 03-24-2006

raeanncollins: always_chaos is a perfect user name for me because I am a single mother of five ranging in age from almost 20 months to almost 16. There is never a dull moment in our house.

ldrake: We saw a GI for stomach issues, ENT for breathing issues, and a Pulmnologist for the lung issues cummulatively each of them discussed the issue of aspiration.

I think each of them has some dealings with this issue, and I am sure that seeing any one of them would point you in the right direction if you needed further consult.
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