Episode 268: Lily and Mia’s Myobrace® Experience - Keeping It Real with Lily, Mia, and Hallie

Hi, it's Hallie and Lily and Mia and we are bringing a nice raw conversation around myobrace where Lily and Mia are going to share today their thoughts, their perspectives, their experience on myobrace firsthand because they have used it following other expansions. So jump on in and get ready to hear from a 6 and a half year old and an 8 and a half year old on what they think about MYOBRACE. Quick Disclaimer all information, content and material of this podcast are the opinions of the speakers and is for the informational.

Purpose only and not intended to serve.

As a substitute for the consultation, diagnosis.

And or medical treatment of a qualified healthcare provider. Welcome to the Untethered Podcast. I am your host, Hallie Balkan. I'm a certified myofunctional therapist, feeding specialist, podcaster, business owner and mentor. This podcast is all about getting your questions answered and collaborating with colleagues to bring you the most up to date information in the orofacial myofunctional therapy, airway.

Tethered oral tissue and pediatric feeding therapy space.

If you're new here, I challenge you to keep an open mind and join my mission to spread this message far and wide.

If you've been around since June 2019, thanks for being a loyal listener.

As we jump into today's episode, remember to listen with correct oral rest posture.

Tongue up, lips closed, teeth apart, breathe through your nose. Let's get started. Hello everybody. We are going to jump right on in. So I'm gonna let Lily talk to us first about her experience with myobrace. I'm not even going to ask her any questions. I just want her to share with you all like what she thinks about it and what her experience has been so far. So Lily, take it away.

The myobrace is really uncomfy in my mouth and somehow Mia keeps it in the them the whole night but I keep spitting it out and, and I think it's not working because. Because. Because I feel like it just since I can't keep it in won't work.

And what is it that you think it's supposed to do when you say it's not gonna work? Like what do you mean by that?

I mean like I don't think. I don't even know what it's supposed to do. So whatever it's supposed to do, I don't think that it's gonna do that.

Okay, but you sometimes say something to me that you're afraid you're gonna have to get something if this doesn't work. What is it that you're thinking you might have to get. If the MYO brace doesn't work, braces.

Ah.

So it's supposed to be preventing you from getting braces or.

Yeah, so preventing us from getting braces.

Okay, so let me give them a little bit of back history just in case you're new here and you have not listened to other episodes. L Alf appliance for early expansion at age 4 to 5. And so she got some really good expansion. Then she moved into. When we moved to south Florida, because we were living up in the Maryland area. When she had the ALF appliance. When we moved to south Florida, we started going to North Miami, and that's where you got your additional expansion. Right. And so you had a hyrax expander, rapid palatable expander put in. And that expander had a forward growth component that was customized and added to it. It was more than just your typical hyrax expander, because a lot of people hear rapid palatal expander, they hear hyrax. They think it really only grows the palate on one plane. But our goal was to grow the palate on three planes because we had an airway focused dentist down here who helped us with this. So you had upper and lower expansion. Again, when we moved down here, and you got some beautiful expansion in your palate, you went into some permanent expanders for, like, a month or so, very temporary period of time, until we then had you start using the myo brace. And the goal of the myo brace was to continue to guide the growth and to hold the growth that you already got. Right. So that you didn't have your expansion that you got. We didn't want your upper or lower jaw to collapse, and we wanted to continue to guide your growth and not have you locked up in, like, a permanent appliance over time so that as you continue to grow, as you lose teeth, as your adult teeth grow, grow in the myobrace is supposed to help guide and hold what you've already got, plus guide future growth with the goal to hopefully avoid, like, braces down the line. So when Lily says, you know, she doesn't think it's working and she doesn't want braces, that is what she's ultimately referring to. Now, Lily, will you hold it up and show everybody who's watching on YouTube what your myo brace looks like? Okay, so Lily is in a step one myo brace. And for her, and when I say step one, it's based on, like, her age and the size of her palate. And so it is A medium size. Lily put it in so everybody can see if they're watching. So she can very easily put the myobrace in the issue that we've had. And her airway is completely clear. We've had scans and everything. We know that she looks good. It is. She's holding expansion, but we've noticed that she can't keep the myobrace in her mouth for more than a couple hours per night. She tends to, like, gag on it. And she's not choking because I know the difference between gagging and choking. But many would think she was choking from the way that she's gagging. And ultimately her body is rejecting or spitting out that MYO brace within an hour of two or two of being asleep. So it's not staying in her mouth overnight. She wakes up with it and it's somewhere in her bed. So. So she has to, like, dig it out of her sheets and. Yeah, that's been your experience. So I know. Dr. Barahil, I believe, who's our dentist down here, gave you another myo brace to switch to. Right. If you are ready to switch to it. But we haven't switched to it because we haven't been able to keep this in your mouth overnight. So what was a suggestion that you and I were talking about? Like, what was a solution that we came up with in order to help you wear a myo brace? More like, instead of wearing it at night.

I have to wear it during the day.

Right. So we kind of did that a little bit today. And you wore it for a little period of time, but not really even more than an hour, I don't think. So the goal is, like, when you come home from school after you have your snack, if you're home and not running to after school activities, like, let's wear the MYO brace. Lily, please share your thoughts.

The Marvoris, like, it kind of makes it hard to swallow because it, like, because I think I spit it out and I. Because it's hard to swallow because, like. Because, like, when I swallow my tongue.

Like, like kind of like pushes it out.

Yeah, so. So it's cuz, like, like there's so much spit in my mouth that I'm holding in there. So. So. And I can't swallow it because of the myobrace. So that's why I think I spit it out at night.

And this has been one of my concerns for some kids. I feel like the myobrace is too bulky for some children, and even if they have enough space for it to be in their mouth, and they're no longer tongue tied or they're not tongue tied at all. And they don't have lip ties or buckle ties, and they have enough, except expansion to hold the myobrace. Even with all those boxes, you know, checked, if you will. There are some kids that I've seen that really struggle to keep it in their mouth. And so that's what we've experienced with Lily. I had my hesitations and reservations around myobrace, which I've shared in the past, especially as a standalone appliance. As you know, all of these appliances, if you will, that are removable, that require a high level of compliance. I've seen how with some children, with all things controlled for, otherwise it's just not a good system. Then there's some children who use it and have, you know, better experiences and results. But I do feel like these appliances also really require a perfect airway because it does force your lips to be apart. It makes it very challenging to close your lips around it. And. And so if there's any airway issue at all, I actually don't feel it's very safe. But that's my personal professional experience and opinion around that. So, Lily, is there anything else you want to tell us about the myobrace? Please share.

Wait, what did you just say? It was like something about.

That for some kids, it's not the best solution.

Like, I can't, like, it's hard to, like, close my lips around it. So.

But you normally have your lips closed, especially when she's sleeping, and I check on her throughout the night. Her lips are always closed. So, you know, I had my concerns around putting an appliance in her mouth that was so bulky that could potentially lead to the lips being apart at rest, especially when sleeping, when you normally have your lips together. Any other thoughts you want to share before Mia shares her experience? No. Okay, so we're going to switch over to Mia, who does have a cold this week. So if you see. If you're watching and her mouth has been open a little bit or you hear her coughing, sneezing, or heavily breathing, that's okay because she's congested and might need to do that right now to breathe, right? Yes. Okay. So Mia has her myo brace here. I'm going to go ahead and open it. Mia, do you want to put it in? And I almost dropped it. You want to put it in and show them what it looks like? There you go. And so this is your second one already? Yeah. So she had one. Her mouth Was even after expansion, she still had a very tiny mouth. Now, keep in mind, she was also expanded around age 4 and finished during, like her pre K year with her expansion. Then she also felt like Lily was. It was upper and lower hyrax with forward growth component. She never did alf. We skipped the slower expansion route with the ALF appliance because which is alternative light wire functionals for anybody who's wondering. But we skipped that because she had croup nine times as a three year old and had basically chronic croup and upper airway and, you know, upper respiratory infections throughout infancy into toddlerhood and her preschool years. And so, you know, after she had been put on so many steroids, dexamethasone, repeatedly, we had inhalers. She was kind of headed on. We were working, you know, had gone to pulmonologists and other specialists, and she was like, headed towards that lifetime airway issue diagnosis. You know, one of those diagnoses where they basically said, she looks like a kiddo who's gonna head into having asthma. My goal was to not have her enter into a lifetime diagnosis of asthma. And so we did go into that early expansion and we went straight into the rapid expansion at her age without, you know, starting slower, which I did consider. But the research basically shows that when you have a kiddo with chronic upper respiratory infections, it is more. It is suggested that they would do better and that they really need that rapid expansion to open the airway. Thankfully, we have had much fewer sicknesses and colds. I feel like whenever Mia's home with one, we sometimes record podcast episodes because we take that opportunity to record some. I feel like in a couple of episodes, I'm like, Mia's homesick right now, or Mia has a. A cold. So if you hear her coughing, that's why. Right. But she's not typically sick. And I will say that when she does get a cold or she does get an upper airway thing these days, it does not turn into croup. It's very rare that we've had a croup episode since expansion. I think where we. Where we had nine in one year, we've maybe had one or two max in the past two years at this point point. So typically it's just a cold. You can hear her coughing a little bit, but not. Not typically croup, thank goodness. And if it's anything that starts to resemble that barky cough, like, we're able to kind of curb it and catch it before it gets worse. So yay for that. Okay, so Mia, I would love for you to share with us your experience with the myo brace. What do you think about it?

Well, I used to have a smaller one, but then I moved on to a second one because that one was getting too small and it was staying in my mouth. So I moved on to a K2.

And that one is, I think, still a size small. But the one you were in was even smaller. Right. So this one is smaller than your sisters, but show them it has some, like, you can kind of see through. If you hold it up for them, you can see through. It has, like, a white shape inside where you can kind of see the design. It's very cool. Lily's does not have that same build out, if you will. I think maybe your next one might, Lily, but we're not there yet. Tell us about how it is for you at night.

Like. Like it stays in my mouth, but I don't know why.

You don't know why it stays in your mouth?

Yeah. I don't know why it doesn't say in Lily's mouth. Well, but I also don't know why it stays in my mouth.

Yeah, we're not sure why it does, but it does for you, right?

Yeah.

Yeah. But I would not have started with this as the first. It was one of the things we discussed. And because of you getting croup so much, we were like, nope, this is not a good thing for me to start with. We need faster expansion than this will give us. Right. So we decided not to start with myobrace, not to start with alf, and to go straight into the hirax expanders with that forward growth component component upper and lower. And then the same thing that we're doing with what we were doing with Lily is what we did with you where we said, okay, we're going to go into some permanent expanders for like a month or two, and then we're going to go into the myobrace to help guide continued growth. Yes, Mia.

Like, when I'm sick, I wear it to bed, like, if I'm really stuffy because I'll obviously just like, spit out because I'm sneezing.

Right. So. Or coughing or it's harder to breathe, and you need to mouth breathe. And that's the other thing too. Right. So we've seen that when you are sick, like right now you have a cold. We don't typically wear it because you can't keep your mouth closed. And so then it kind of blocks your airway if you need to mouth breathe because your Nose is stuffy or running. Right. So that also, I guess goes back to speaking to my concern about kids with upper airway issues or severe congestion or chronic open mouth breathing. If there is an airway blockage, is this a safe appliance to use? And arguably my vote is no because we should not be putting anything. We should not be making the path of least resistance a greater path of resistance, if that makes sense. What else would you like to tell us about it? Anything else? Is that it?

So, like, there's different myo braces, like there's the K1, K2, but I don't know if there's any other because I haven't got any R1.

Yeah, there are other ones that more advanced ones. And we actually were supposed to have a follow up appointment that I had to reschedule because Lily had some testing and we didn't want her to miss that test. So. Because there's like a bazillion tests at the end of her school year right now. So we have to reschedule the appointment to go. And I have a feeling you might be moving into the next one. And me? Yeah, you. And what's interesting too, that I think is interesting actually is that there's these like little holes inside the myobrace and I actually have some concerns over it. And I don't think I want you wearing it anymore because one of the white wires and it started poking through and coming through the plastic. Like it's broken and around. So it's kind of. Remember it was like poking into your. Into your tongue, but it's also looking dirty to me. And so even though we clean this thing frequently, like, I'm actually worried that there's mold in this. So I don't know how other people keep this clean with the plastic pieces inside of the blue piece. But like boiling it or. I mean, I don't know if we can. I haven't tried that. We follow other instructions on, you know, how to keep it clean, but I'm actually not a fan of one plastic in the mouth and two things that are hard to clean because we know they can carry mold. So that's my thoughts on that. Anything else you want to add?

Like it has like these holes and it's like brown. So like it's dirty basically. And like this keeps like coming out. It will come out even if mama.

Puts it back in.

Yeah. Do you guys see that little white wire sticking out there? So that that's been happening and we did pop it back in like twice now. But One, I don't think it's very safe for her to continue wearing. And again, I'm seeing. And we clean this every day, but I'm seeing, like, some yucky buildup in there, so won't be wearing that anymore. Guess it's time for the next one, huh?

Yeah.

Yeah. All right. Anything else you want to tell us? Or is that it?

Nothing else, Lily.

Anything else you want to tell us? Speak in the mic.

Well, my voice has the same exact hose, but it hasn't been getting dirty and there hasn't been any dirt inside of it.

Okay. How about you, Mia?

So, like, it's supposed to help you with your airway, and, like, if you. If it, like, stays in your mouth, like, you. You won't have to get braces.

Yeah. That's the goal, right? Yep. All right, well, thank you both for joining us and sharing your experience with your myobrace. I know our listeners really appreciate it because they sometimes ask me what I think about it, and they also want to know what you guys think about it. So we always appreciate you coming up, coming on here and doing updates, because now that you've had it for a while, you can actually talk about your experience with it. Right?

Yeah.

Well, thank you both. Say bye, everybody.

Bye.

Bye.

Bye.

Thanks for listening to this podcast.

If you found value in this episode and want to hear more of these Myotots, Airway and Feeding related episodes, be sure to leave a review on Apple Podcasts and share this episode on your social media platforms. You can access free resources and all I offer@halibalkin.com or pop over to Holly Balkan on Instagram to get all the latest updates.