ENT opinion on the speaking valve

davidsmom · #1 03-18-2011, 09:06 AM

Hi, I have posted an introduction a while back but this is my first post. I have been following your posts and find this board very helpful and informative, as we are new on this journey and still learning.

My son just turned 6 months and at our last ENT appointment I had asked our ENT if our son would be a candidate for the speaking valve and if so, how old would he have to be before we could try it. The ENT told me that he is not a supporter of the speaking valve, that if my son will want to make noises and talk he will do so around the trach.

Our speech therapist said that the speaking valve may help David with his swallowing issues, because it would create more pressure and make it easier for him to swallow. He currently doesn't take anything by mouth and is not swallowing.

What are your experiences with the speaking valve? How old was your child when they started using it? I know it probably depends on the heath issue and the reason the child has a trach but just wanted to hear some of your experiences. I want to seek another opinion from a different ENT.

Jordyn's_mom · #2 03-18-2011, 09:28 AM

I would see another ENT just for a second opinion. We actually did not go through our ENT for the speaking valve. Our speach therapist got our pedi to write a prescription for it.

Our experience with it has not been very sucessful. This is only because our daughter does not have an air leak around her trach. She does not have a problem with swallowing. She was 7 months when we started trying it. We are going to be downsizing her trach next week so we will be able to use it more. In our daughter's case, she can't talk around her trach. Now the other night I did accidentally put in a smaller size and I could hear some sounds then. Every case is different but if your speach therapist thinks it will work then I would get a second opinion and persue getting it another way.

Hope this helps

bigalexe · #3 03-18-2011, 10:16 AM

Did your ENT say they weren't a supporter in general or just in your case. If it is just in your case can you maybe share some details why?

Tons of kids with trachs have speaking valves, and yes it does help with the swallow. It helps enough that I pretty much don't ever voluntarily eat unless I have a valve on. I don't have a muscle dysfunction with the swallow but with the open airway your body kind of fights swallowing to protect itself from aspirating. This is all based on personal experience, I have no idea what the technical reasoning is for what is going on.

As far as speaking, I was told by doctors @ New York Presbyterian that trying to talk around a trach or cuff can damage the vocal cords because it takes so much effort. Once I got my PMV they instructed me to please try and refrain from talking while I was on the ventilator to keep from injuring myself.

Peyton's Parents · #4 03-18-2011, 10:16 AM

Peyton's ENT was also not a fan of speaking valves in pediatric patients and recommended covering the trach instead. Although Peyton learned to cover her trach there are several negatives around that method - having constant fingers around her trach was an increased infection risk and she is also deaf which meant it was difficult for her to sign one-handed all the time.

Speaking valves can be frustrating because many children can't seem to tolerate them early on. Peyton had toleration issues with the Passy Muir for many years but that seemed to be the speaking valve everyone starts with. Around 2 years old we tried two other brands - Shikani French and eventually the Shiley Phonate and had much better success.

I guess what we learned the hard way is to try several brands and be prepared to take breaks and then try again later. There are so many factors as to why children need trachs that it is not suprising that speaking valves are not a one size fits all type of a solution.

At this point, Peyton rarely uses a speaking valve - she talks by covering her trach, wearing nothing at all and speaking around the trach or when she is capped. It seemed to us that the speaking valve wasn't really the mechanism for her being able to vocalize in itself - but it allowed her to hear her voice and once that happened she has figured out she doesn't need the valve itself to vocalize any longer.

TaraB · #5 03-18-2011, 10:53 AM

I don't have a ton of experience, but we JUST got Logan's speaking valve this week. He's only worn it once, at his trial. Our SLP at the hospital was not convinced that Logan could handle the PM valve since he has poor head control. Now we have a wheelchair that straps him down pretty well, so I pushed for a try. Logan handled the valve better than any of the doctors had anticipated...satting 95-100 the whole time he wore it. He made noises, too.

lynn · #6 03-18-2011, 11:03 AM

Joseph got his around one year of age~ our ENT is totally opposed to speaking valves in peds~ we got the script from our pulmo who likes his kids to use them for the natural peep it creates...... the speaking valve does also help with the swallow~ there have been studies as to why and I think they may be on the passymuir site~ I DO know Joseph eats much better with his on than off (and I think he may taste more with it on?? BigAlex any input on this???)

I will say Joseph will NOT tolerate his PMV without me drilling a hole in the side of it so the pressure is reduced~~~ we have also tried the trachoe twist that has adjustable pressure valve and he will tolerate it as long as it is not completely tightened shut.

davidsmom · #7 03-18-2011, 11:23 AM

Our ENT is not a supporter of speaking valves in general. Our son has a trach because he has paralyzed vocal cords, he doesn't have any issues with his lungs. I am not sure how he will do with the valve but I won't know until I try. I guess it doesn't hurt to get a second opinion.

bryantem · #8 03-18-2011, 11:24 AM

The speaking valve can help with swallowing because it is more natural than without. Our ENT was supportive of us trying the speaking valve. Either he will tolerate it or he won't. He told us that the speaking valve would be tricky for Addisyn because of her tracheomlacia, and it was. She never fully tolerated the PMV even up until the day she was decannulated. I would get a second opinion or ask your pulmonologist if you have one.

kadiera · #9 03-18-2011, 11:30 AM

I'd see about a second opinion.

It can take some time and experimentation to use one, and you definitely need an air leak - Alexander had a lot of issues with his at first because his leak was small, but as he's grown & we've downsized trachs, he wore a valve all day (and is now capped about 14-15 hours a day).

k181192652319119 · #10 03-18-2011, 11:51 AM

Our ENT got us ours but our pedi is always welling to step in if we need him to. Maddy was 5m when she got hers and was 6m when she finally was able to tolerate it. Now my husband and i saw a instant change in our litte ones acid reflux and throwing up but the ENT said that she thinks it was just that reflux in babies tends to stop around 6m. But she was willing to take the credit for it anyway lol. Good luck.