Episode 79: An IBCLC's Journey with TOTS with Kelly Euperio, MS, RD, IBCLC, CSOM

Hi and welcome to episode 79 of the Untethered Podcast. Today we have Kelly Upierio joining us. Kelly's the owner of Boulder Valley Lactation in Boulder, Colorado. She is a registered dietitian and international board certified lactation consultant with a special passion for helping breastfeeding dyads dealing with tethered oral tissues and other complicated feeding issues. Quick disclaimer. All information, content and material of this podcast are the opinions, opinion 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 orofacial myologist, feeding specialist 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, tethered oral tissue and airway space. I challenge you to keep an open mind and join my mission to get this information out to the masses. Let's get started. Well, Kelly, thank you so much for joining us on the podcast today. I'm really excited to talk about all things IBCLC with you.

Great, thanks. It's great to be here.

So let's dive right on in and talk about how you fell into becoming an ibclc. What was that journey like for you?

So for me, and I think for a lot of IBCLCs, we become an IBCLC because of our own experience breastfeeding. And for some it's like, oh, it was great. And for some, like me, it wasn't great. Now my experience actually was kind of a little of both. Like, it was actually not too bad for me. My first daughter, she latched on right away. There was no pain, everything was great. But then later she was diagnosed with failure to thrive and I couldn't get enough milk in her. I of course blame myself that I had low supply. She wouldn't take a bottle. And so I asked the pediatrician, you know, what I should do and he just gave me formula. And I was like, I don't know what to do with this because she won't take a bottle, right? You know, And I saw one IVCLC who told me, oh, she's probably, you probably have enough milk. Most moms think that they don't have enough, but they do. This wasn't helpful at all, right?

What do I do with that information?

So I got more help online, you know, and there was no, I don't Know, I mean, there were no, like, Facebook groups back then about this or, you know, Instagram. I. It was all, like, Googling or, you know, I think that baby center was super active back then when I had my babies, you know, and, you know, so I did all of these compensations for her and, you know, made myself have this huge supply so, you know, I could basically just squirt milk in her mouth, you know, And I thought when I was becoming an IVCLC that, like, that's what I'm going to help moms do is all these compensations, because it just doesn't really work that well, you know. And so then I had. When I had my son is when I started my journey. And it was pretty much kind of the same with him. He latched on, but I, like, got ahead of the game right away, made myself have a big supply, big oversupply, so I could feed him to have just enough. Yeah. So that was my journey to decide to become an ibclc. And then in my first day as an intern with my mentor, she told me that she had me tell my stories about breastfeeding. And she's like, sounds suspicious. And then she's like, let's look in your mouth. And she looked in my mouth and she's like, oh, you're tongue tied. Your kids probably are too. And that was my first day. And I was just like, what is she talking about? I definitely do not have a tongue tie. My kids don't have tongue ties. You know, but then, I mean, probably within, I don't know, three months, I was like, oh, they do. And that was my problem. That was the whole issue with breastfeeding. And I was able to compensate for them, but they never were able to competently breastfeed. And, you know, that's why they weaned earlier than I wanted them to. That's why it was never, you know, all of these things started coming, you.

Know, it wasn't the ideal breastfeeding relationship that you were hoping for for either of your kids. Right.

And honestly, like, I didn't really even know that existed at that point. And I was becoming an ivclc, you know, so interesting. And I thought that that was the ideal.

You know, it's like, I can totally relate because Lily was lip and tongue tied my first, and it was painful, it was uncomfortable. And I took her to an ivclc who was like, well, you just have to hold her this way. And like, of course, it's like when you take your car to the shop, I've Talked about this on the podcast. Like, I positioned her the way that she showed me. We propped her up. She fed beautifully. She transferred milk appropriately, and they were like, you're good. Never mind you. She was like, first percentile. They marked her failure to thrive. Like, coming out of the hospital. Like, my mama heart, like, sunk when I saw that on her medical records that were all electronic and on my phone. Easily able to look at them, of course. Should never have seen that. And it was that whole experience, too. I never knew that it was or could be different because I sought the help that I thought that I needed to seek. And then at month 13, we finally stopped because I was like, this is so painful. I just can't do this anymore. I was that stubborn mom who figured out ways to help my baby compensate.

Who?

And I say stubborn mom because I know a lot of moms would have quit earlier. And I've worked with a lot of moms who have quit earlier because it's painful. It hurts to the point where like, sometimes bleeding cracked, like, you know, it hurts. Like, I would literally turn my face away from my child when latching her because it was so painful that I didn't want her to see my face because I'm like, I can't not react. So I'm like, how good is this that I'm, you know, breastfeeding a child with this type of reaction or feeling like, that can't be good energy to be sending into my child's body through my breast milk or just energetically in general. And this is where I go totally out the other end. But.

Right, but it's not woo. I mean, there's hormones that change.

There's always science behind the woo. Yeah, totally.

Yeah. So, you know, before I became an ibclc, you know, I started my kids in Mayo. Like, I, you know, obviously I didn't have it all figured out, but I knew that much. I knew that, you know, my kids needed that. And then within about, I don't know, probably six weeks of them starting Mayo, they both were put in als, which I know is very similar to what your kids are doing, you know, and we've gone from there. But, you know, looking back, it's like, I see. I see so much, and that think is normalized. And, you know, so my goals and IBCLC is, you know, to basically be the IBCLC that I needed and to not normalize these things, you know, I mean, so with my daughter, you know, I look back at pictures and honestly, I mean, I think that if she would have gotten her tongue released as an infant. It wouldn't have done a thing because I wouldn't. I mean, I don't know anybody around here that, you know, 10 years ago was doing any sort of baby myo or helping retrain the tongue or do suck training or helping get a lip seal or anything like that. And I think if we would have just released her tongue as an infant, wouldn't have seen any changes in her. You know, I look back at pictures and of course she's one sided always. She always has this looking this way, tilting the other way. Like every single picture, you know, I'm like, oh my God, how do I not notice this? But of course you don't. Your mom, you're like, you know, even if I had a baby today, I might not notice it. But, you know, so there's that constantly. Her mouth is open constantly, like in every single picture. You know, when she's smiling, it looks cute. When she's not, it just looks like, okay. You know, as a mom, I thought, oh, she just has this heart shaped mouth like her aunt, you know, and I thought it was just the way she looked, you know, and, you know, I normalized how much she slept. You know, we all talk about, you know, the bad sleepers as the ones that aren't, you know, transitioning their sleep cycles. She was the opposite. Yeah. Really? She slept like 13 hours at night and then would take at least one three hour nap a day and then probably another two hour nap.

Yeah, I had to wake her to eat, otherwise she wouldn't have gotten enough. The doctor was like, wake her throughout the night to feed her. Do not let her sleep that full 10 hour, you know, stunt, like, and that was early on. Like she was sleeping six hours early on than eight hours. And I was like, wow, we have a great sleeper. And then they're like, you need to wake her and feed her. I'm like, well, that makes sense.

Okay, great. Yeah. Yeah. My daughter Kendall didn't sleep through the night, you know, actually for a long time, but she was in bed with me a lot. And so it was really easy. She, you know, but she was just so tired all the time, you know, and everybody of course was like, oh, you're so lucky. You get all that time during the day when she's napping and you know, by, I can't remember, I think by eight months she was sleeping like 13 hours at night straight. And here I am not producing enough milk, not knowing why. And that's part of the reason right there. Is because she's. Most of these hours are sleeping. I don't know.

Then it also comes down to, like, how much effort is she putting out to feed when she does feed, and then how much exhausting. Right. It becomes like you're expending more than you're taking in. And so it becomes this vicious cycle. And it's like, almost like this catch 22 or. Well, what is normal sleep at this age? But also, are they taking in enough nutrition and are. You know, and so I think that that's a really great point that does not get discussed enough. Lily was that great sleeper, and I had to wake her, and she's.

She's always.

I mean, we did end up doing, like, some form of sleep training, like, later on, because things did change. But at the same time, she was the kid that, like, defied. Like, she was just against all the rules. Like, she was a belly sleeper. Tush was up in the air. She slept in that tripod, which I later learned is usually an airway thing. And even. Even Mia, who was released, Released at day five of life, was a belly sleeper. As soon as both my kids could flip themselves over on their bellies, they were belly sleepers. And I. I didn't fight it, because even if I did, if you. Even if I tried to flip them back over, they found their way right back to their belly. And they both have beautifully shaped heads for kids who had neck preferences and shoulder bodies. So I'm not hating it, but I know it's like back to sleep campaign. It's a trick thing. It's really a tricky thing.

So Kendall, when she wasn't sleeping with me, would sleep on her back, but she would arch her back like this on her back, where she was almost, like, on her side. Yeah, she was arched so much, which I know now is also airway.

Yeah, complete head and neck extension.

Yeah, complete head and neck extension while she was sleeping. And. Yeah. So, I mean, I'll have to go.

Back and look at pictures because Lily did sleep in our room for a very long time, and she was either in a rock and play, which I know is a big no no now, but again, my kids have beautifully shaped heads, and we were very lucky nothing happened. But she was in a rock and play for a long time because it was. Well, it was the best position for her to sleep in. Like, obviously was swallowing too much air and was uncomfortable. So that that angled position was great for her if she was not, like, in bed nursing or, like, laying next to me. And as a first time Mom, I was, like, so afraid of, like, crushing her and rolling over her because of, like, what, you know, the media puts into your head, that I was basically like, oh, my gosh, I can't bed share with her, like, for lengthy, extended periods of time. But then I'd be so exhausted, I'd fall asleep, and I'd wake up and be like, oh, my gosh, she's still in here. Oh, my gosh. And I always, you know, I tried to make sure she was, like, between my husband and I so that, like, you know, she wouldn't roll off the bed. But then I'd also make sure, like, well, what if he rolls over? I don't want him to roll onto her. Like, we also have a dog. And so there's also just, I think, so many misconceptions about, like, bed sharing out there in general. And I know, you know, we don't have to get into all that, but for. For breastfeeding moms, I think it's an important thing to do in a safe way because. And, you know, and it's again, they've normalized not bed sharing. They've normalized getting that baby away from mom and into a crib at such an early age that I think that that also can mess with, obviously, supply and, you know, breastfeeding in general.

I mean, with bed sharing, it comes down to, you know, most breastfeeding moms will bedshare at some point, so we should be teaching them how to do so safely if they choose to do so. We can't just turn a blind eye and say, never do it, because then nobody has information, you know, about what is safe and what isn't safe. But anyway, I digress. But, yeah, so, yeah, so with Kendall then, you know, when she started myo, she. They looked in her mouth, and they were like, wow, you have huge tonsils. You know, and of course, I mean, she had been mouth breathing and, you know, everything. And so I had a very similar experience to you that her tonsils are now not as big now that she's in an alf. We also did one other intervention, which she no longer has dairy and mostly no gluten, but so I don't know. And it was around that exact same time, so it's really hard to say, but I'm sure it was a combination of both.

Oh, yeah. I mean, I think for Lily, if I cut out dairy, I would really have to get her, too. She's, like, so limited, but expanding that now. I could see us going in that direction, but she's also my kid who's still very like hypersensitive to things and so like she'll smell something and be like, this is not cheese, like this is not this, like I'm not touching now the ten foot pole. So like until I can get her to take some alternatives. We've got her on some almond milk and she's tried cashew milk and like some things like that. But you know, I try to limit like milk milk, but we definitely still do some like cheese and butter and stuff. But yeah, I do feel like if we limited dairy with her and gluten that would definitely help. But at this point she's not mouth breathing. Her tonsils still look pretty small. So I'm kind of like almost waiting to see like will they flare up again this winter? Although she's home with us, so unless we travel somewhere or she ends up back in school at some point, like I'm not even sure that this, this winter will be a good indicator because she's not really fighting off the traditional germs that you would in winter in the D.C. metro area.

Oh yeah, totally. Yeah. So my daughter, I mean she used to have her open mouth all the time, but now she doesn't. She prefers to sleep with tape. So she's been doing it since she was five. And she, what was really interesting is so our oral facial myologist was talking to her about it and she was like, oh yeah, I want to try it. And she started it and will not go back. And I've seen her like fall asleep in the car or without it and she has her mouth closed, but she wants it on there. It's like her safety thing. But she knows how much better she feels. And she was sleeping still 12, 13 hours a night at 5. And as soon as she started using mouth tape she needed less sleep. She could stay up later, she started, you know, which, you know, I feel like ton of sleep is super valued in our culture. Like, oh, you know, But I was so excited, I'm like, she doesn't need that anymore. She doesn't have to keep going to bed at 7 o', clock, you know, and then get up at 8 when.

She shouldn't have to.

Right.

Like, I mean at a certain age, like you shouldn't have to anymore. And I think that again, it's become so normalized for kids to get like a certain amount of sleep and even adults to get like X amount of hours. And as you get older it might be less and dah dah, like you're saying, I Think, and I've seen this recently, that the amount of sleep that a person needs night really depends on you, your body. Like there is no one like right number per se. And it's what do you wake up feeling rested with, like this? For some people that could be six hours, for other people that might be eight. So, you know, more so adults, not like young kids, you know, they might need a little more. But yeah, it's a really interesting topic. It's definitely not one that I am super well versed in. But I've been seeing like the buzz around this and we're going to be talking to Ken Hooks in our MYO membership next month, who's a respiratory therapist and he's been on the podcast. He goes deep into like the sleep studies and like what to look at. And I just think the topic is so fascinating because it really all boils down to quality of sleep. Like what is the quality of your sleep? So like, is it restorative?

Right.

That's what it all comes down to, right?

I mean, and without even, I mean, without even a sleep study, I know that her sleep definitely got better because the other thing that she was doing is she was coming into my room multiple times at night and telling me like, oh, I lost my Lambie, I need help finding it. Or mom just went to the bathroom like, okay, thanks for the update, you know, you know, but she would always need like help finding some new milk. And she stopped completely like day one. And so we know, I know that it was all mouth breathing. She wasn't getting, you know, she wasn't transitioning sleep cycles. She wasn't probably getting deep sleep. She needed all of this, you know, sleep. So I mean, without even a sleep study, because we didn't have one, we actually tried to get one around that time and we really don't have anybody in this area that will do pediatrics at least at that time. I think that we do have one person now. That's okay.

But I mean, it's hard here too, I think unless the kid has like emergent sized tonsils and adenoids, they often are not sending young children for sleep studies. And I'm okay with that as long as that child is then getting the right behavioral type of treatments that they need. When I say behavioral, I mean like myofunctional therapy. It's more like a behavioral type treatment, right? Not like just throwing them into a surgery or something. Unless they absolutely need that. But yeah, I think that if they're headed down the right trajectory, the right path Then you can totally skip the sleep study. Like if that's a big barrier, that doesn't mean you can't do other things. And I like to say that because I think so many parents are like, I don't even know where to go. There's no one here, like around me who does this. And so again like if it's not emergent, it's not always necessary. Sometimes they can be great to get insurance to cover certain things, certain treatments and in that case it might be worth pushing. But otherwise, like you're saying, like you could see the quality of life difference, like who. You're not going to see that on a sleep study necessarily. So that's pretty cool, right? Yeah.

And so then I know you wanted me to talk about my son too, which was a completely different journey, you know, with him when he was a baby. You know, breastfeeding was better. But again part of that was I compensated from the very beginning and latch was never an issue with either of my kids. But part of that is the type of nipples I have, you know, and I see this now as an ibclc. There are certain moms with a certain type of nipple, they're very elastic, you know, really change shape easily, you know, and that they don't have pain. It's not hard to latch onto. Like you could feed all the tongue tied babies, you know.

Interesting.

But again, so I actually didn't start my IBCLC journey until he was 2. And around that time he was self weaning, which I now know he wasn't actually self weaning. I mean it was, there was all kind, I mean, you know, I went on a vacation and he took a lot more bottles which was a lot easier for this tongue tied baby. And so then he started to prefer the bottle a lot more which sent us on a whole, you know, down the whole rabbit hole. And you know, before I started my journey becoming an ibclc, I would have called that oh self. Yeah, he, you know, weaned himself, you know, but no he didn't. You know, we offered an alternative method more often which was so much eas, but I actually so my first sign with him that something wasn't quite right. Just besides all the compensating I was doing and the self weaning and whatnot was solids with him. He was what I called so picky, you know, he gagged more than my daughter and oftentimes I would say like, oh, he's gagging on purpose because he's trying to, you know, I thought you know, I didn't know, you know, and then I would blame myself that he was picky. I was like, you know, I think that I introduced more foods to her and I didn't introduce enough to him, you know, and we were doing baby led feeding, but, you know, and then I was like, well, maybe I gave her him more kid type foods early because she was eating. You know, I kept blaming myself.

You know, you do as a mom. I mean, we do it all the time and we really need to not. But yes, I understand. I do it too.

And then at 18 months, he had like two words. I'm like, okay. And the. Our pediatrician said that because of that, we would qualify for early intervention. So we started working with an slp and we had. He was able to work with her until he turned three. So he pretty much worked with her. I think it took us a little bit of time before we got her, like, started with her, but he worked with her for about a year with very little improvement. Very little improvement. Like a little bit with language, which was probably developmental anyway, you know. And then right before, you know, during that time, right before he turned three, is when we started also doing myo. And I started like. Like my wheels were turning and everything. But it was probably really good that he had been working with an SLP for a long time and we were doing myo, and then so we got the release and, you know, within. It had to have been two weeks. Within about two weeks, not only did he just start talking, like, saying more words and speaking, like, more sentences and all of that, he was saying sounds that they had been working on with the SLP for so long. And I specifically remember the K sound because my daughter's name is Kendall and he would always call her Tendle or something like that. I don't think he could say L's either. So it's something different. Tendu. I think it was like tendu. And within two weeks, it might have even been sooner, you know, but he could say her name. And I was just blown away. And again, I, you know, I don't think it necessarily would have happened that quickly if we hadn't been in both MYO plus and slp or, you know, if it was an SLP that had been also. That also did myo. But, you know, but because he was primed for it and just couldn't quite, you know, get the tongue up there, it just happened so quickly. So quickly.

I've had cases like that, and I know, like Richard Baxter has described cases like that. With kids that he's released. And I know that there's like more research coming out on this if there's just not enough. Right. It's a lot of, it's like case study or reports. But yeah, I mean, we see this, like, we see this in those of us that do. Us SLPs who also do myo see this. And I know, like I always say at that young age, like under the age of four, like traditional myo is four plus. So I'm always like, it's, it's speech or feeding or whatever with like a myo twist. We're always working from like, what are the goals of mayo? And like, how can we achieve that with younger child who may not be able to do everything that we can do with the child who's like the cognitive ability of like a 4 year old on up, like, how do we modify this so that like they can also achieve the same goals, like, so they don't need mayo when they turn four. Cause we're basically, we're doing toddler types of mayo, right? And so I even teach on this in the course because I'm like, I feel like we need to be teaching SLPs OTs. Like anybody who is doing traditional therapy with these children, they need to understand what tots are and how to assess for them and how to diagnose them, like how to treat them when there's a pre and postophrenectomy situation. Don't just send that child off for a release. It's not gonna help them if they haven't been primed. Like he was well primed for it. Right? But like you're saying that's not like, had your daughter been released as a baby, you even said like, I don't think it would have done much for her because, you know, you, you didn't know that we needed to have done anything else surrounding that release. I know she wasn't released as a baby, but I think that there's so much discussion amongst the tongue tied Facebook groups. And like, I keep myself at those these days because I'm just like, that is a rabbit hole. I just don't have time for. And I just can't, I'm like, I can't police those posts, to be honest with you. I'm like, hopefully just, you know, come listen to the podcast, you'll learn a lot here. But you know, I constantly see like there's like this 50, 50 divide of. Well, we had a ton tie release and it did nothing for us. And then as soon as somebody says, well, did you work with an IBCLC or an SLP or an OT or you have any body work or anything surrounding that frenectomy, the labial and lingual frenectomy or blah, blah, whatever. And parents are like, no, we didn't do it and it didn't work and da, da, da and whatever. And like, it's just, you know, it's like I can't, I'm not going to argue with people. But I can tell you that most of the time when it didn't work, it's because they weren't primed. There was no pre op or, and, or appropriate post op. And there's a big difference between getting them ready for it for the procedure. And then also like there's a difference between the active wound care. Like there are no sutures in place. Like active wound care is its own standalone thing that you need to be educated in separate from like post op myo. Right? So I know a lot of people send these kids in and they'll just try to like prescribe part of a program and they'll go in for the frenectomy and then they try to bring them out and continue that program with like extra tongue lifts. And I'm like, that is not how you can, you know, keep the tongue from reattaching if there are no sutures in place. And even with sutures in place, like, we can still have reattachment if things are not done, you know, appropriately. So there's just such a larger conversation, I think in a lot of education to be done. And I know that there's a lot more people who are starting to have these conversations and are starting to teach these things in their courses. So I'm really excited about that. I won't say a lot. There's a small handful of people, but you know, that's also why for me, like when I'm teaching an SLP or OT to become a pediatric feeding therapist, like, you better believe you're not going to leave my course without a solid foundation and instruction and tots and myo, because nobody has any business working with any feeding pediatric feeding patient. If you don't have a background in these things, you are missing the boat big time and really doing a major disservice to your patients. And you know, I can't say I know that a lot of traditional IBCLC programs also don't necessarily teach these concepts either. And I think it's just, it's kind of rampant across the board and I know like a lot of us are like, we have to change this. But, you know, I thankfully get a lot of parents who listen to this podcast who are like, thank you so much for having that conversation or talking about this thing or this helps me know like what to ask for what professional to seek out. And really at the end of the day I'm like, that's just, that's my goal. If I can just like impart this information and change a child's life for the better. If they're going to be going through this procedure, if they need that, I'm like, my work here is done.

So my mom is an slp. Ah. And she actually retired about a year ago, you know, but I started talking to this, to her about this stuff and it totally blew her mind. And she, you know, once she started kind of digging into it and everything, you know, she was like, oh my gosh, all of these kids that I could have helped, you know, and she started looking in all of their mouths. She was a school based IBCLC and yeah. And you know, but now she's retired and you know, she wishes so much that it would have been included in any sort of curriculum or anything because there were so many kids, you know, and once she started looking in mouths of these school age kids, she was like, they're almost all tied, you know. And granted though, she lives in an area where there was nobody to send any kids to within probably four hours that has training, you know. And so, you know, but yeah, it's really, really sad that those of us that are working with either, you know, babies that are struggling with feeding or kids that are struggling eating or speaking like 100%, that should always be ruled out. But we have to realize that it's not just like this magical procedure that, oh, once they, you know, once they get that tongue released, you know, they're automatically going to be able to breastfeed or, you know, they're going to be able to talk or, you know, I mean, I feel really lucky that I almost, that I didn't know about the tongue tie, you know, when my babies were babies, because I was able to compensate for them. But I feel like maybe I would have gotten it released and then I would have been in the boat of it didn't, it didn't work. You know what I mean? But kind of by dumb luck, you know, we started working with the SLP for a long time, you know, before I figured out, oh, they need myo. And then we did that, you know, because I was Preparing them to get their ALS and then, you know, so it was lucky. But even with that. So Dax is my son. He reattached a little bit, and part of it, I think, is because we did it at age 3 and without sutures. And so me trying to stretch him at age 3, like, I was getting bit. And, you know, elevations were definitely not easy.

Yeah.

But at 24 months.

I understand.

So we are planning to have him re released really soon, actually, this winter. And so Dr. Lopez, you had him on. He is going to do a guided release with him. So I am super excited for that. Yeah.

So if you guys aren't Familiar, Kelly's referencing Dr. Daniel Lopez, who is an osteopath, and he was on one of our earlier episodes, and he's a serial. He's a super cool doctor to listen to. Like, he just.

We're lucky to have him here.

The tongue to the rest of the body, which is so, so cool because it's totally, like, up my alley. And the things that make me really excited to talk about.

Totally.

That is awesome. So how is he doing with his feeding? Like, is he picky, selective? Or is he, like, has he gotten better with that? Is there still a lot of gagging, or is he okay with that now?

He's so much better with his eating. I. You know, he's pickier than my daughter. But I would say, if we're gonna compare him to most, you know, American kids, he's not that picky. He has celiac, which we also, you know, figured out around when he was 2, that's a whole nother rabbit hole I could go into. But, you know, so he. He has to be a little bit less picky, I think. And so he has probably about you know, six vegetables that he really likes, you know, but I'll take it.

I always said, like, while Lily is more selective and definitely, like, hypersensitive to things, like, she generally will try any vegetable, but she likes it plain. She wants it. She doesn't want it roasted. She prefers it steamed with, like, nothing on it, no flavor added. If I roast something, she'll be like, what did you put on it? Like, did you roast it with, like, spices? She's like, what's on this? What are you trying to sneak me? I'm like, I'm always like, lily, I will never sneak attack anything in here. Like, I always am, like, full on. Like, this is what you're getting, kid. Because I know if she puts something in her mouth and she's like, whoa, like, she'll even tell me, like, we'll try a new chicken nugget or something. So I'm trying to like, food chain her back to like eating the grilled chicken she ate before. She was 15 months old and had a really bad vomiting experience. And she'll try it and if it has too much flavor, she just tells you it's too spicy. It is too spicy. And I'm like, huh, okay. And I'll taste it. And I'm like, this is really bland to me. So it's just, it's so interesting because it just tells me so much about, like, how she tastes things. Like her flavor profile is completely different than mine. But again, she'll eat almost any fruit. She'll eat a variety of vegetables and greens. So she's getting her nutrition. She eats eggs, she'll eat chicken, apple, sausage. Come on, kid. But not the organic version because the organic version is too spicy. And I'm like, you're killing me, kid. We're an organic household. But at the same time, I'm trying to bring variety in. And so at the end of the day, she does have a well rounded diet. Well rounded. Nutritionally, she's getting what she. So I think that's also part of why I haven't thrown her into therapy with an ot because I'm also like, well, let's see what else with her. Alf, she did become more willing to try things. She started being like, well, can I try that? Because my 2 year old is like, I try, I try, I try that. I eat that what's on mama's plate. I eat what's on papa's plate. Like, if I give her the same thing Lily's eating. Because sometimes we do eat different meals. I'm guilty of that. Mia will my tiara will always be like, mama, I sit in your lap. Can I come sit in your lap? And like, she'll jump up on my lap and just start eating what's on my plate. And so. And I'm like this mom who's like, oh, gosh, I really should just stop giving her what Lily's eating and, like, start giving her exactly what we're eating. I just don't usually by like the time they eat dinner, which is the bigger issue, to be honest.

Oh, I know.

Yeah. Like, my husband and I usually eat later than them. So we are that household. But I'm like, that's why I will never pass judgment on anybody else. Because I don't have every. There's no such thing as perfect. And I don't have my dinner meals together half the time. I. But yeah, no, I think it's so interesting because she's getting a good amount nutritionally. Her ALF definitely helped her become more adventurous, more willing to try new things. So she's added some new things and she just added in like pomegranate seeds this past weekend. And I was like, I mean to me, like, I don't, I love the taste but I don't love how it's like this hard seed that you have.

To chew at the end.

And I'm like, she was all for it. So I'm like, it's just the things that she likes sometimes make no sense to me. Like there is no pattern. And so we just always go back to like, let's just try. Let's just see if we like it, we like it. If we don't, we don't like.

Whatever. But my son's at the age where if his friends like something, he'll try it.

Yeah, I think it's her sister has like influenced her. Her two year old sister.

For my son, it's definitely his friends, his neighbor friends who are two years older. So they're way cooler. And yeah, he also really likes to cook. And so if I. Which you know, I feel like I should include him in the cooking more often. But then it's also just makes it that much harder. So I try to as much as possible because he will try things that he cooks and sometimes even if it's one bite and like. Okay, that's good. What'd you think? Is it? You know, but so I've tried to do that quite a bit with him as far as eating goes.

Yeah. I mean we can give all these suggestions all day long but sometimes real life just, you know, when it comes down to real life.

Right.

But I love that. That's awesome.

Yeah. The thing that makes me want to get him re released is that he's just his alf. We're having a harder time moving his jaw forward a little bit because it's still just held back. And so they're kind of just out of place where one we're waiting for teeth to come in but he still just has a little bit of a recession job. And also he, you know, sometimes I mean there's just something not right, you know where with his bladder overnight. And I find that. So he's always been a nasal breather but lately I found that. And he comes in our bed in the middle of the night so I can look at him. But lately I found that more Often he's opening his mouth a little bit and just looking at, like, you know, looking at it. I know that he doesn't have full range of motion, you know, and so he's totally on board with it. I wanted to wait till he was totally on board with it, you know, because I. What'd you say?

How old is he now?

He's eight. Okay.

Yeah. It's a little trickier when they're older. You really, like, want to get their buy in so that they're willing to do the work before I got there.

To make sure it's not worth it.

Right.

So he's playing baseball right now. So he wanted to wait till baseball's over in case it's painful. He doesn't have to miss anything. So.

I mean, well. And Lily on the flip side, right? So we released her when she was 24 months old. And then her alf went in, like, right before her fourth birthday and just came out. And what I've noticed is that, like, we're revisiting some of her myo now, like, because I, like, want to make sure that it's really held in place. And I noticed that while she seems to swallow properly, her tongue was coming through her teeth to make us that S. And I was like, okay, if your tongue is coming through for S, it's got. You're not swallowing perfectly 100% of the time, I guarantee it. So I was like, let's jump you back into some mayo. Like, let's reset on what we were doing before. And then I noticed, holy cow. Like, she's having a hard time elevating the posterior portion of her tongue after her palate in the same way she could before she was expanded, before she was, her palate was grown both forward and laterally. And then I was sitting here, and I was like, okay, she's also choking on water. Like, ever, like, six months into her ALF appliance. Like, whenever she would drink a small sip, she would be fine. But a continuous sip of liquid through her straw. I would notice she would have, like, these. She's not really choking.

Choking.

She has choked, like, once or twice where you had to, like, really hit her back hard because, like, really she just couldn't clear it. But usually it's like a serious coughing episode where it's like, eyes are watery. She is having a hard time clearing it, but eventually gets it. And I'm like, that's not normal. She should not be coughing on things and liquids. Why is it going down the wrong way? Why do you not have Good control over three sips of water in a row. That doesn't make any sense. When we graduated you out of myo. You never had a problem with that even before when you were tied. She couldn't figure out how to drink from an open coffee when she was 2. And I was like, we gotta do the lips. You can't figure out how to, like, you know, and we didn't release the lip, but that's another story. But she, you know, now I'm like, I'm pretty convinced. I've convinced myself that the posterior portion of her tongue does not fit into her palate. It can't reach it the same way it could before. Everything was grown and things shifted. And obviously with age comes growth too. So, like, the combination of, like, her growing, plus her us expanding and growing her palate forward and laterally, I'm like, I think we're probably headed for, like, a second release to, like, give her some more elevation posteriorly. And when she suctions her tongue, you can see the frenulum. Like, it is front and center, but it's really elastic. And she can get. The front tooth hurts really well up into her palate. But I noticed, like, it's got to be something like most more posteriorly that didn't. It healed to what her mouth was when she was 24 months old. And it worked for her anatomy and totally expanded her. And now I'm like, oh, gosh, now we have to go through this again. But, you know, I'm willing to do it because obviously I want her to be okay. I don't want her choking on thin liquids. That's dangerous. But, yeah, it's interesting because I think we constantly have to step back and look at, like, where are we now? How are things working now? And not assume that just because we've done one thing here or one thing there that, like, we're set for life. Exactly. I always.

Yeah, no, I always talk to my. The parents that I'm working with with their babies, you know, if they get a tongue release, I'm, you know, obviously really clear about how this isn't magic. This is, you know, we have a lot of work to do afterwards. But then also, this might not be the end of it after, like, this, like, four weeks of what we're gonna do or whatever it is for them. You know, you do have to revisit it later. They might need a second release at another point, you know, might. You know, and then they definitely might need either myo or something like that when they're Old enough to do it. I mean, same thing with my daughter. Like we constantly have to check in and do some MYO for a few weeks, you know, and it's, you know, the things that change with her are so, so weird. You know, back before they got their als, she was the one that could swallow properly and my son couldn't, you know, and then I'll test him again now and all of a sudden, like a year ago, she couldn't. I'm like, what is happening? This is one thing I wasn't worried about with you, you know, but yeah, because everything shifts because, you know, and so I had to reteach her. How to, how to swap, how to.

Use your new anatomy, like how to. Yeah, and it's, and that's also like for me personally with my patients, like we do a three month check in after graduation, a six month, and then like definitely at a year, we're also checking back in to make sure like, are things still working the way they should? With the disclaimer to parents, like, if things change, just reach out. Like we might need a little touch up or something. Because I think that we all kind of feel like, okay, this is a therapy, we're going to do it once and then we're solid, we're good. Like when we're done, we're done, we've graduated. And when I was talking to Dr. Lenny Kundal, who's a dentist, you know, he was talking about the growth that children experience just naturally. Like forget all these appliances. Like these children, like their mouths, their anatomy, it changes until they're what, like 18 years of age or so. Like, we have to take that into consideration because like we're talking about like you don't know how those just natural changes might impact their patterns and what they're currently doing. Now if there's nothing interfering, then yes, the body adapts and we compensate when we need to. And you know, things don't seem to be an issue right. In your everyday child. But for children who had any type of struggle from the beginning, whether it was feeding, you know, latching to feed any. I even tell parents, like colicky babies, you know, messy feeders, hard time transitioning the solids, like any language delays, like anything like that, like those are big red flags that we should just be more closely monitoring their development to make sure that we're giving them the ability to function optimally because how much harder. And no one wants your child's life to be hard. We all want to give our child the best opportunity to have an Easy life. Right. And so that's where I'm like, if we can just do a few little things or a couple sessions here and there to, like. Like, you're saying, kind of clean up. Like, clean up what's going on and make sure that we're on track and really adapting to any new anatomical changes, any physiological changes. I think that's a topic that's also not discussed, like, at all. Nobody's talking about that.

No, I agree. Oh, one other thing I wanted to tell you that my daughter is in right now is because I know you touched on this in another podcast, because I listen to your podcast. She's in vision therapy.

Ah, yes, yes, yes.

Yeah. So two years ago, she came to me and said, you know, that she was. Everything's blurry. And I took her to an eye doctor, and they said, no, she's fine. So I was like, okay, are you just wanting glasses or something, kid? You know, you're fine. So then she was like, all right. She didn't really say anything to me. And then last year, during the school year, she was like, no, mom, actually, something's wrong. You know, I'm blurry. You know, like, things go double sometimes. Sometimes it's blurry, sometimes it's not. So I took her to somebody else because I was like, okay, I'm not going back to that person again. And they're like, you know, we can't lock in on a prescription for her. She does seem to be nearsighted, but we can't lock in on prescription because sometimes she can focus, sometimes she can't. And, you know, they did the test where they hold something out in front of you, and then they bring it in close, and you have to say when it goes double over a foot away. It was double for her.

Oh, poor thing.

Yeah. And luckily, somehow she can read. Well, they're like. Because they. The doctor was like, I've never seen somebody that gets double that easily that who's grade level at reading. And, you know, so she has now been in vision therapy since, I don't know, probably a little. Little over eight months now. And it's helping. But of course, I was talking to the eye doctor there and the vision therapist, you know, about. Do you know, have you guys talked about a connection with, like, her high palate and how everything above that, you know, changes the shape of the eye socket and the eye, you know, and they're like, oh, no. You know, they're like, you know, Daniel.

Lopez, you really should talk to him.

Right, exactly.

It's so interesting. Like, I'm actually. This is making me think back when I was in high school, like, out of nowhere, I all of a sudden started having trouble with vision. And my mom took me to our eye doctor, who's, like, very well known in the area and very, very highly sought after. Like, private pay, doesn't even take insurance kind of person. And, you know, very, very knowledgeable. And I've even taken my kids there. And basically the message was, well, sometimes kids get extra stressed, like, around exam time. Like, is it exam time right now? And I was like, well, yes, we are. Like, I don't know. It was like midterms, final, whatever it was. Exactly. Well, not exactly. Like, it's always the same time. And they were like, well, the additional stressors of dah, dah, dah, dah. And like, of course, we all know stress impacts your health, so of course someone's gonna go like, oh, yeah, yeah, that makes sense. And then I don't know if I just learned to compensate better or what. But even to this day, like, if I go into certain, like, stores that have certain lights, like a Nordstrom rack, like these, like, there are certain lights that affect me that I can't manage as well as others. And I'm not. I'm, like, now going back and going, huh. I wonder if that's, like, related to everything else. Because it probably is. Duh. But, yeah, I mean, it's so interesting to see how many of these kiddos have vision issues that we're working with. And thankfully, some of our parents have figured that out. And these kids are actually in vision therapy before they even come for a myo eval. But, yeah, the connection is so, yeah.

You say the lights. I mean, my daughter. I mean, when she was most adamant was when she started basketball and she was in these gym lights.

Yeah, it's those, like, fluorescent lights.

Yeah. And I mean, it was horrible for her. She couldn't do it. She couldn't handle it.

Yeah. Like, I will actually be in, like, a Nordstrom rack shopping, which hasn't happened in the past, you know, seven months. But, like, I would be in, like, a store like that, and all of a sudden, like, I'd be like, wow. Like, I'm feeling, like, really lightheaded, and it would. I feel like this is coming on. Like, I'm noticing it. I would have to. So my husband had this thing, and I won't really go into too many details, but, like, he passed out a couple times, and he went to some specialists, and they're like, oh, you have this, like, vasovagal syncope, which is, like, literally, like, we don't know what happened, so we're just gonna give you this random diagnosis that means nothing. And they're like, if you feel it coming on, get down on the floor and, like, squeeze your hands and feet really tight to, like, bring all the circulation back to you. Like, don't pass out. He's like, yes, that always works on the Metro. Thank you for that advice. Which is, like, where it happened once or almost happened, and so I will notice myself. Like, I'm like, now I'm like, okay, squeeze everything really tight sitting in the middle of Nordstrom rack, like, squeezing my fist and, like, squeezing the handle of, like, the shopping cart. And it does have. But I'm like, why is this happening? Why do I even have to do this? Like, this something? And when I go back to a medical professional and tell them this, they're like. They just brush it off. They're like, well, you're fine. How often does that happen? Only in those stores. Don't go there. I'm like, oh, yeah, that's great. Great advice. Thank you very much. But, yeah, I have to wonder. Technically, my vision is still, like, 2020. I don't wear glasses. I have good vision. So everyone always just thought, like, oh, Halle's just stressed out, or Halle's just, you know, making something up kind of a thing. When I was a kid, I also have a lazy eye, which is a whole other story. But they always, like, wondered, like, is it harder to see? And I've had surgery on it three times over the course of my life, and the muscle never really seems to hold, which I also wonder, felt like, ties into the stressors on my vision system. Yeah. So I don't know. It's definitely a fascinating topic. And I know Angie Lehman and I dove into the eyes a bit too, on her episode with me, but we referenced back to Daniel Lopez's article, and that was where I was just like, oh, gosh. The interconnection between all this is fascinating. Absolutely fascinating. So my question for you is, how is that going for her? Is it actually helping? Do you feel like there's more pieces to that puzzle that need to be addressed?

It's helping.

Yeah. And it's hard. Like, vision therapy is hard, isn't it?

She hates it. Yeah. And, like, we have to do a lot of work at home. Reminds me a lot of mayo, but it's working. But it's not. We're gonna take a break from it after this session. Because she hates it so much. And we've learned a lot of the things that I'm like, okay, we can do this at home, you know, but it's not. It's not like a 100% helping. You know, they've locked in on a prescription for her, so at least now we can do that. And when. So we're gonna give her some time with her glasses just to now then see, you know, but. So I don't know, like, it's helped. And she's not going blurry as much and she's not going double as much, so everything's. It's better. I don't know. It's not like 100% better, but I'm the type of person who, you know, I always want to know why, like, okay, so why is this happening to her? You know? And, I mean, that seems as plausible as anything else, you know? And like you said, the doctors are just like, oh, it just happens to some kids. Like, why aren't we looking into why more?

Like, maybe if we know the root cause, like, we can address that and then these other symptoms will go away.

Right. I mean, I just don't understand that in our medical system in general. Why isn't the root cause looked into more?

I mean, I can't even tell you, like, in grad school and even, like, when I started to work in the schools, I can't tell you how brainwashed I was to tell parents, it doesn't matter what the diagnosis is. We're still going to treat it this way. And in my opinion, I'm like, not only were we, like, gaslighting parents and being like, sorry, like, this is an unimportant information, but. Well, first of all, knowing a diagnosis can absolutely change the course of treatment. Maybe less so, like in speech therapy or language therapy, but definitely, like, on a myo side and airway side and tot side, you know, there's definitely. When you're getting to the medical side, dysphagia, swallowing disorders, like, we need that medical information. Those. What is the root cause of this issue? Because is this the primary problem or is this a symptom? They're like, let's stop slapping band aids on all the symptoms. Deal with the root cause. And then, oh, my gosh, what do you know? Other things start to miraculously go away and things fall into place, and this person is now, like, more rested and more energetic, and they feel better, and they never knew their quality of life could be so good. And, like, this is what I hear from adults, like, Adults who finally have MYO and their tongue ties released, if they have a tongue tie, and maybe they go through, like, adult, you know, growth appliances for expansion work. And I've literally had parents, like, adults go, holy cow. Like, I've lived 35, 40, 50 years of my life. I never knew it could be different. And I'm like, that's sad. Like, I was that person, too. I get it. But, like, at the same time, I'm like, holy cow. Like, we are not only failing the kids, we're just family, society as a whole. If people think it's okay to feel this way, going through life this way. So I'm like, we can all do better.

Yeah, totally. So, I mean, I did the mayo with my kids while they were doing it, and then around that same time, one of the dentists that does good releases near me, you know, said, I want to try something out on somebody. And I was like, oh, you can do it on me. I'm tired, and I'm not. I don't care, you know? And he was like, okay. And so he's like, well, I mean, and he's one that requires MYO for adults, so it's great, you know? So I was more diligent about, you know, doing it with my kids and whatnot, but I was like, but I don't have any symptoms. I'm definitely tied, but I don't have any symptoms, you know? And I was like, okay, well, that's fine, right? He just, you know, he's like, I just want to try out, you know, a couple new things on somebody, and I don't want to do it on a baby. I'm, like, valid. So I got my tongue released, and the first thing I noticed was I didn't wake up with, like, a neck pain every day. I had been having my husband pick out a new mattress or saying, like, we need to get a new mattress, or, I need a new pillow, or. We had gone through four mattresses in five years.

Oh, my gosh.

Because I kept saying, like, the ones that we're picking out are crap. I wake up with a kink in my neck and, like, all day and, like, rubbing it all day, you know? And I remember, like, always kind of feeling that way and always thinking, like, I had to have my pillow in one exact certain way or, you know, I would wake up with a hurt neck, you know, and right away, that was gone. That was automatically gone. And I always thought that I, you know, this goes back to the myo. But I actually always thought, you know, I put my tongue in the right spot. I'm like, oh, my tongue's up. It's supposed to be up. Great. But then when I started myo, I didn't realize. Oh, So a mid portion of my tongue is up, but then the front part is on my teeth and down, you know, so I always thought like, oh, I'm doing everything right. Nope, wasn't. And. But then, you know, I started learning more about the breathing and airway issues and I started really retraining my breathing. And I do some bike races and my favorite bike race is Pikes Peak. And without changing my, without changing my workouts or my training really at all, just getting the tongue released and really focusing on nasal breathing. And I did a lot of buteyko exercises while on the bike and learning more nasal breathing, breathing while on the bike and everything. So just that stuff. I decreased my time, which is like a two hour ride for me, by 30 minutes.

That's incredible, right?

It was crazy.

Wow. Holy cow.

Yeah. I mean, and honestly, I say without training, without changing my training, but I probably trained a little bit less, to tell you the truth. You know, that's incredible. Yeah. So whenever you talk about athletes and how, you know, I'm by no means an elite athlete, but it makes such a difference. It really does. Like just the, you know, I think changing my tongue posture especially, and just my tongue being able to get up all the way just opened up my airway so much. Yes. You know, and then the addition of learning more how to breathe and everything.

Yeah, how cool. I mean, we hear stories of it all the time, but I'm like, I think until, like people hear more stories and more stories and more stories like that, they'll finally be like, okay, maybe I need to do this or maybe I need to look into this. But how cool. I mean, how cool like that.

It's not too late. It's not too late when you're an adult.

Interestingly that you say that. I've had some therapists enter like our myo program and say, I have a 7 year old who I'm thinking about, is it too late for a tongue tie release? We're like at seven. No, like, please, please send, you know, prep them. Let's do this. Like, how can we support you? Because, yeah, I'm like, we have adults. We have adults, like, you know, in their 60s and their 70s who are getting tongue tie releases. I know I've not had these patients, but I know of colleagues who treated patients that were in their 80s and to see the impact and the improved quality of life and the ability to breathe better. Like you're talking about. And adding in some like, breathing reeducation. Like, it. It's never too late. It is never too late. And hello, like, how do you. How else do you extend life? Well, by not killing off all the brain cells. So like, let's be breathing properly so that our brain can last as long as it possibly can. And, you know, because the more that we mouth breathe, the more brain cells we kill. It's pretty much, you know, that's pretty much what's going on here with sleep apnea. So, yeah, I mean, we can address sleep disorder, breathing at any age and frenectomies at any age. So I love that. I love that message. That makes me so happy.

And I didn't even think I had any symptoms.

Right, exactly.

So many of us adults think, oh, I don't have any symptoms. It's to that, yeah.

I've got adults who come in and we assess their child and then the adults like, wait, do I have that? Wait, I think I have that. And then I'll be like, well, you look, your tongue looks a little tight underneath. But I mean, we'd have to evalue and figure out like, this, that and that. And, you know, and they'll even say, like, I don't have any symptoms. Like, I'm fine. I'm like, you know, 45. And I've never had a problem with my tongue a day in my life. Like, I'm not a picky eater. I'm not this or I'm not that. And then you start to ask them other questions and you're like, wait, that's related. Like that.

Yeah. I have the same conversation with parents of babies. Oh, yeah?

Yeah. And that's where I'm like, you know what? It's so it's exciting though, to be able to educate and to also give hope. Because some people have been living with issues for so long that's impacted their mental ability to function in daily life. Like, it's really. There's like a mental health component to it. But yeah, it's just. It's incredible. It's so much further reaching than just releasing a tongue.

It is.

And doing some mayo. It's quality of life. Like daily ability to function in your daily life and be that human being that you want to be for yourself, for your family, if you have one. And so, yeah, obviously very passionate about this topic, but me too, but I love it. I love the work that you're doing. I love the success that you had and that your kids are having. And I love that everybody on their own journey. I think it's a perfect example of how it's so individualized and what it looks like, you know, from one sibling to another and even like the parent, you know, coming into the mix, it looks very different. And so I think that the more stories we can share, the more beneficial it is for our listeners, whether they're parents or professionals in the space or people who are, you know, well versed in this versus people who are just starting out on this journey. I think it's really, really helpful to share these stories. So thank you so much. Is there anything else you want to add that we haven't covered?

I don't think so. You did a great job.

Thank you. Kelly, it's been a pleasure having you. Thank you for sharing your story and your kids story with us.

Yeah, thanks for having me.

Thanks for listening to this podcast. If you want to hear more of these Myo Tots, Airway and Feeding related episodes, be sure to leave a review on Apple Podcasts or pledge a small amount on patreon.com untethered podcast. If you found value, others you know in this space will too. So be sure to share this episode on your social media platforms and join us over on Facebook on my Facebook page @halliebulcan biz, on Instagram @halliebulcan. And you can head over to theuntetheredpodcast.com to grab a copy of the show Notes where you can also subscribe to be kept up to date on the latest podcast episodes.