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cari
04-21-2009, 11:50 AM
We are having difficulty with trying to get Emerson to use the valve that helps with speech and noise. She just won't tolerate it. Has anyone ran into this before? Are there kids out there that just can't use the valve because they are to sensitive to it? She is now 18 months and is signing away but we can;t get her to make any noises.
This is getting tough in our house. Emerson and I have both been diagnosed with a rare form of muscular dystrophy that they think is the cause of vocal cord paralysis and there are just no other cases out there and we don't know what to do. Blah, that my complaining for the day! Sorry

JWorthington
04-21-2009, 12:00 PM
There are some people who simply cannot tolerate a pmv, they describe the feeling as being similar to when a cartoon character's head swells up and explodes. Some people learn to talk by other means, like covering the trach with a finger or putting their chin down to cover it. It took Sam over 3 years before he would tolerate his, now he wears it all day.
My advice to you is to build up very slowly, even just a few seconds at first, and heap on lots of praise, maybe she'll take to it. Or maybe she'll need a modified one to start with (see the thread about hole in pmv just down the page). I'm sorry I have no knowledge of you and Emerson's muscular dystrophy so do not know if this may cause a problem with pmv use, you will need to discuss that with your doctor. Good luck

Julie x

tucker'smom
04-21-2009, 01:53 PM
Hi,
My son Tucker HATED the passy valve at that age, too!
He does not sign, so we had a hard time understanding anything he tried to communicate.

Around November (he was 2 1/2), the pulmonologist checked his pressures while wearing the valve, and they were through the roof! So he said it was very uncomfortable for him-by then, we had the passy valve for over a year, so I don't know why this was the first time we ever checked the pressures.
Anyway, he drilled two little holes in the valve, and Tucker loved it! He started babbling away. Now we got a new one, and he is down to one hole.

So maybe try to see if your doc can check the pressures and maybe drill a hole or two.

Leigh

Peyton's Parents
04-21-2009, 03:15 PM
Peyton hated the Passy as well - and even with holes would pull it off quite frequently (probably just because she can). We recently got the Shikani-French valve and are are introducing it slowly so she doesn't have a negative association with it. She already seems to prefer it though. Our feeding therapist suggested we use a visual timer and start at really short periods of time - 10 seconds, 30 seconds and just build up over time.

Gretchen(Celia's mom)
04-21-2009, 03:28 PM
My daughter has NEVER been able to tolerate the PMV! It's not that she just doesn't like it,,she can not breathe with it on,,No reason according to the docs,,hhmmm anyway we tried it with holes in it and that didn't even work!!
Best fo luck!

Wooders80
04-21-2009, 04:26 PM
Dominic has only recently started tolerating a PMV (there is no longer a pressure build-up, PMV flies off and lots of coughing), this has happened in about the last week - he's three and a half. As well as drilling holes, there are also other brands of speaking valves, for a while Dominic seemed to tolerate a brand called Rusch a bit better than Passy Muir. Everyone seems to be different in terms of how early or not they will tolerate a PMV.

bryantem
04-21-2009, 06:25 PM
Addisyn is 6 months old and can tolerate the PMV wonderfully with a hole it it, but she is unable to generate enough pressure to tolerate it without.
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Ainsley's Mom
04-21-2009, 06:58 PM
I think that if the upper airway is blocked it is very difficult to force the exhaled air through the blockage. Ainsley had severe swelling in that area and it was very difficult for her to tolerate a PMV. We worked on it very hard using a 2 hole, 1 hole and then a non-modified PMV. I wanted her to be able to make sound so I pushed. Wearing a 2 hole and making a little sound is better than nothing. But in reality, looking back, I don't think she was ready. It wasn't until she had her Fundoplication and the swelling decreased that she was able to wear the PMV regularly without building up pressure. And since then she has been wearing it virtually all waking hours and only has difficulty when she's sick.

I don't want to burst your bubble, but I would have to question whether with paralyzed vocal cords, can the air really pass? If the cords are fixed in the closed position it seems unlikely that a PMV could work. But if the paralysis is partial or intermittent you may find that she can wear one. Since your ENT gave you a PMV, perhaps that is the case.

I highly recommend a "step up system" for kids that are having difficulty with a PMV. Start with the 2 hole (or even 3 if you need it). Let the child get used to it for a few minutes. If that's going well then switch to the 1 hole. Let the child get used to it for another few minutes. If that goes well then switch to the non-modified. If the child starts to seem uncomfortable then switch down to the most difficult PMV that the child can tolerate. In this way the child has time to adjust and you find the best fit for what the child can tolerate every time. For Ainsley it would vary throughout the day and could vary from minutes to minute which is why I developed this "step up system".

cherienz
04-22-2009, 07:49 AM
We are known as the family in NZ who have a trache kid on a PMV. My understanding is that lots of kids don't tolerate it. But we use it and for a good 18 months have had good daytime spells on it. However, Mitch still does not talk. When he is well he makes more sound. We can tell from his sounds if he is happy, grumpy etc.

we started with literally a put on and a cough off. We have built up. It is a different sensation for them.
Regards Cherie

KJKK8437
04-22-2009, 08:10 AM
we started with literally a put on and a cough off. We have built up. It is a different sensation for them.
Regards Cherie

That was us, too. It was a long process. I took some comfort that if Alex was coughing, he was breathing. He HATED it, though, for a long time. He cried and cried and cried -- real tears. We used "Bunnytown" as a distractor. I doubt it would work for other kids as well, but it was Alex's total obsession. He would even let a doctor scope him with that show on. But even then, he cried and threw himself around with the PMV. As time passed, adding ten to thirty seconds each day, we gradually worked up to many minutes, a half hour, and finally an hour. His O2 sats were always fine.

But, as Susan also said, we really pushed. As Alex's leak increased, his love of the PMV increased as well.

I hope this makes sense.

kharmasmama
04-22-2009, 12:32 PM
I think that if the upper airway is blocked it is very difficult to force the exhaled air through the blockage. Ainsley had severe swelling in that area and it was very difficult for her to tolerate a PMV. We worked on it very hard using a 2 hole, 1 hole and then a non-modified PMV. I wanted her to be able to make sound so I pushed. Wearing a 2 hole and making a little sound is better than nothing. But in reality, looking back, I don't think she was ready. It wasn't until she had her Fundoplication and the swelling decreased that she was able to wear the PMV regularly without building up pressure. And since then she has been wearing it virtually all waking hours and only has difficulty when she's sick.

I don't want to burst your bubble, but I would have to question whether with paralyzed vocal cords, can the air really pass? If the cords are fixed in the closed position it seems unlikely that a PMV could work. But if the paralysis is partial or intermittent you may find that she can wear one. Since your ENT gave you a PMV, perhaps that is the case.

I highly recommend a "step up system" for kids that are having difficulty with a PMV. Start with the 2 hole (or even 3 if you need it). Let the child get used to it for a few minutes. If that's going well then switch to the 1 hole. Let the child get used to it for another few minutes. If that goes well then switch to the non-modified. If the child starts to seem uncomfortable then switch down to the most difficult PMV that the child can tolerate. In this way the child has time to adjust and you find the best fit for what the child can tolerate every time. For Ainsley it would vary throughout the day and could vary from minutes to minute which is why I developed this "step up system".

Actually with paralyzed vocal cords they can exhale fine, but can't inhale. When you talk, your vocal cords are shut, same as when you swallow. So, having paralyzed vocal cords shouldn't effect the ability to tolerate a PMV - according to our ENT :rolleyes:

drct1245
04-22-2009, 09:15 PM
Until Ayden was downsized from a 4.5 to a 3.5, Ayden didn't really tolerate the PMV... he thought it was fun to scream for a minute or so, but then would cough it off... but when we downsized, he had no issue w/ the PMV. I think it all depends upon size of the airway, swelling, or obstruction as others have mentioned.

Ainsley's Mom
04-23-2009, 05:30 PM
Actually with paralyzed vocal cords they can exhale fine, but can't inhale. When you talk, your vocal cords are shut, same as when you swallow. So, having paralyzed vocal cords shouldn't effect the ability to tolerate a PMV - according to our ENT :rolleyes:

So the theory is that the cords are closed and that's why the patient can't inhale, but then because they are normally closed when speaking that it shouldn't prevent exhalation? I guess I can see that. But what is it that makes the air unable to penetrate the vocal cords upon inhalation but able to penetrate upon exhalation? Maybe they act like a valve in the way a PMV works? I'm curious.

There are many parents that have had a child with paralyzed vocal cords on the forum. It would be interesting to know how many of the kids could tolerate a PMV.