Episode 143: The Unbound Network: TOTs Advocacy and Community with Cassandra Thompson

Hi and welcome to episode 143 of the Untethered Podcast. Today we have Cassandra Thompson joining us. Cassandra is an advocate spreading awareness of and supporting others as they navigate oral restrictions, tongue, lip and buccal ties. After experiencing dismissive medical professional, significant misinformation and a lack of proper support with her infant daughter, she launched the Unbound Network, a community focused on informing, connecting, supporting and sharing experiences. Using her multifaceted design background, she has started People the Unbound Network on Instagram where she engages through visual storytelling. 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 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. Cassandra, thank you so much for joining me today. I'm excited to have you on the podcast and learn all about your journey.

Thank you. I'm very honored that you asked me to be here and to share our story.

Yeah, as a parent who's been through this, I think that having the perspective of the parents for both 1 other parents to hear about and 2 professionals to hear about. I know a lot of us professionals work with parents day in and day out, but we don't always get to hear, and maybe we do, but we don't always get to hear that raw, unedited version and experience of what it's like on this level for a parent and baby, that infant mother dyad to go through the tetheral tissue airway feeding, all of the above myo journey that I know you've experienced with your own daughter. So I'm going to turn it over to you and let you share with us, if you will, your journey, which I know you share on Instagram. People can follow you at the Unbound Network. But tell us, how did this unravel for you as a mom and an infant, you know, feeding dyad.

Yeah, so I am mom to Mari who is a wonderfully rambunctious now 19 month old and you know we have had so far quite a journey And I think like a lot of, a lot of experiences, it has been sort of an ongoing process and I think it will continue a bit. But Mari was born at the almost very beginning of the pandemic. Pretty early on we had feeding challenges. I didn't know necessarily that they were feeding challenges at the time, but I experienced significant pain. We had a very scary weight loss scenario happened very early on in her life around day, let's say day three to four, low supply struggles, open mouth posture struggles, snoring, sleeping struggles with Mari, colic, excessive gas, so many, many issues, including severe ongoing tension. You know, ultimately we learned, I sort of pushed for figuring out what was going on. And we learned around seven weeks that Mari had a severe posterior tongue tie, that she had a significant upper lip tie, and also that she had upper buccal upper cheek ties. And it was a long journey to get to the point where we found professionals who not only understood ties truly and the impact and how all of the symptoms and struggles we had been experiencing were linked, but also really a team to help support us through the process. It was quite a long couple of months. So that journey really sort of brought with it a lot of unexpected struggles for us especially, I'd say, for me as a first time mom and for my husband as a first time, you know, dad. And it brought also a lot of unnecessary suffering for our baby. And so I started the Unbound Network, I think really just in response to me feeling frustrated, frankly, that not only did we struggle through this because of the lack of knowledge in the medical professionals that we were relying on, but really because I saw so many other families struggling in the same exact ways. And that's sort of where we are today.

Yeah, I mean, a big passion is born out of not wanting other moms and babies and family units to go through what a lot of us have been through. And, you know, I know as a mom who experienced it, you know, we had a lot of the same. With my first daughter, a lot of the same symptoms that you mentioned, she lost too much weight in the hospital. We had to start, you know, we had to start the weight checks immediately. Like the next day we go home from the hospital, the next day I'm like now trying to get out of bed with my baby to, like, go to the pediatrician for like daily weight checks. And it takes a toll. Like, you're like, I'm trying to heal and I'm just trying to feed my baby. And here we are, like, with all these extra things that we need to do. In the thick of it, really. I know that the intention was good, but it wasn't helpful. It was more harmful because of the additional stress it put on me. I opened up my, my pediatrician's app and it said my child had failure to thrive, but nobody had ever mentioned those words to me. So I'm reading it on my screen for the first time and it's just like, puts a wrench in your mom heart where you're like, just stick a knife in me and turn it five times. Like failure to thrive. I'm doing everything I know I can possibly do to just keep this baby thriving. And she's failing, I'm failing. Right. And you know, the mother like carrying that weight in addition to all of the postpartum hormones and you know, it's like we're in fourth trimester now and there's no support. I mean, sure, the pediatrician was great because they asked me questions about me and I know not all pediatricians do that. They were definitely monitoring me for like ppa, ppd, just through all of my infant, you know, the child's well checks throughout the first year of life, which I appreciated and I didn't seem to present with that. But also my internal struggle with not being able to feed my child. When you feel like I have like two responsibilities with this child. Right. Is like basically to keep them alive and we do that by keeping them fed and clean and you know, sleep hygiene is important and yeah, it's, it just was like, I just need to feed this baby and love on this baby and I'm failing at 50% right now. Like, and it's hard to love on a baby when you feel like you're failing too. So yeah, it's, it's such an impact that nobody, I don't want to say nobody's talking about it, but it's not readily available information if parents don't know where to look. Even in this day and age with, you know, Facebook groups, I know people jump into Facebook groups and they ask questions and on those threads, the divide even in a tongue tied group of the information that you get for and against and this and that. And I'm going like, this is like, maybe more harmful than it is helpful at this point. It can be, do you know who do you trust? Who do you listen to? How do you even navigate what you're supposed to do next as a parent? I mean, I know professionals in this space who have teams at their fingertips who are like, I don't even know what to do for My own child, you know, and it's. There's definitely this underlying issue of who do you trust? And I know you and I were chatting before we hit record, and that was a big question of yours as well. And I know we've had some parallel journeys just in that pediatricians, like, let's go there, because I know pediatricians, for example, while they're wonderful and they've gone through a lot of schooling and we're not discounting their knowledge, for me to have a pediatrician rule out a tongue tie without doing a functional evaluation and just, oh, well, they're gaining weight, they're on their own weight curve, or they can stick their tongue out, which is what we hear frequently from the babies that treat. Those are not indicators of whether or not a tongue tie is present. Let's just throw that out there first and foremost. But it drives me batty as a mom and a practitioner that they're dismissive of potentially one of the biggest issues causing those feeding challenges right now that everything else is, like, trickling down from. And if we could address this properly, we could save a lot of time, energy, tears, anxiety, you know, potentially for the mother. Mother dyad. But anyways, you know, I know you've gone through this, so what was your experience like? You know, going to the pediatrician? Do you feel like they were supportive? Do you feel like they were dismissive? Do you, like, what was that like for you?

Yeah, so. So I'll say I. I approached my pediatrician after a very long, late night, kind of rabbit hole research process. And Mari would have been about five and a half, maybe six weeks old. I say five weeks when this happened, and I shared that I actually happened to come across a random mom's blog. I was researching initially why I had low supply, because up until that point, the only thing that I quote, unquote knew was that the struggles we were having, why Mari was refusing to nurse, why she was pushing off the breast when she was nursing, why we had struggles with positioning, and why she had a preference for one breast versus the other, and why she had lost so much weight and why we had to supplement formula. We knew at that time that all of it related to the fact that my body was not producing enough. That was a very heavy thing for me as somebody who struggled to get to the point of having a healthy pregnancy and a healthy baby. Just wanting to be able to provide for my baby was such an important thing for me. And there's nothing wrong with, you know, families or parents who choose to not nurse not breastfeed, chest feed. But for me, that's what I wanted. I wanted to be able to do that. So I was researching, you know, why do I have low supply? Trying to figure this out, and came across a mom's blog. And I remember just like crying as I was reading this because I was like, she gets it. This woman, this random woman from another part of the country. It was like a three or four year old blog. Like, it wasn't even a new thing. I don't even remember how I came across it, but she understood. And so I then just from reading her blog and her account of what she struggled with, I then like, you know, sort of started understanding what was going on. It also linked to a conversation that I had with a friend who also had struggles. And all these things kind of swirled together and I was like, oh, well, like, what causes low supply? Or, you know, why do some babies have high palates? Or, you know, it was just sort of like this mix of research, if you will. And I eventually, like, got to the point where I was like, oh, what's a lip tie? Oh, that's interesting. Wait, that's what Mari's lip looks like? Is it not supposed to look like that? And so I, like, eventually just landed on this, like, oh, Mari has a lip tie. That's what's causing the issues. That must be why we've struggled. And I'm gonna find the right resources for this. So I happen to have a client who is a dentist. She's not a pediatric dentist, but she's a dentist. And I reached out to her and I was like, do you have any information about this? Like, do you know anything about ties in general? And she shared that she didn't, but she had a friend who, who does. And she connected. And I sent some photos and her friend was like, yeah, it does look like she's got a tie going on. Like, contact your pediatrician. So I did thinking, like, I've cracked the case. No questions are remaining. You're welcome. Let's work on the next step.

Yeah. Ta da.

Right, so. So I like. Yeah, exactly. So I sent a photo and I, like, explained what I had found and the research and the context that I had made and all of this. And I was like, they referred me to this specific hospital, you know. You know, can you back up this information? And that chat came back with basically, you know, ties are a fad, and it's unlikely that the feeding struggles you and Mari are having are related to them. And I'll refer you to an ent, just to see what they say, but let's continue on with the course of action. And I was like, a little devastated because I really just in my gut felt like, but I really think that this is what's going on. And so I was referred to an ENT that was a terrible experience. And, you know, further put me in this space of confusion and concern and not really knowing what to do or who to go to anymore. And, you know, also when you're a first time parent, being told that you're just nervous because you're a first time parent or you're just looking into things that aren't really there because you're a first time parent, especially as somebody going through, as you mentioned, that fourth trimester, that's a lot to process. And you begin to question a lot of things, including just like, for me, at least, like my own thought process, my own instincts. And that is something that I've. I've always really prided myself on having good instincts.

Yeah.

And I felt, Yeah, I just felt and was made to feel like a little crazy actually, like. Like that I was just being, you know, that I was just overdoing it. And in the back of my head I was just like, but my baby is struggling and I'm struggling. Yeah. And is there anybody who really can own this process of figuring out why we're struggling? And at the time, I didn't even really know, frankly, how much we were both struggling because everything that I was experiencing was just chalked up to being normal. Right. Like, it's normal that we would battle thrush for eight weeks. It's normal that I would have cracked and bleeding nipples because, you know, they just have to toughen up. It's my first time nursing, you know.

Like, it should hurt in the beginning, like, what?

Why? Right, right. I know now that that's not true, but in the beginning of the labels.

They give babies, right? Oh, they're just a lazy feeder. Oh, they're just lazy feeder. Oh, you know, no, babies are not lazy. Let's stop calling them these names. Like, no, their job is survival and they have to do that eating. So if they can't, we need to look at, like, what is going on. They are not choosing volitionally.

Yes.

I'm sorry. Let's just get rid of that. And the whole colic thing. I'm like, this is a hill I will die on. Colic is a symptom. It is not a diagnosis. So when we have these pediatricians saying, oh, your baby's just Colicky or, oh, they have reflux. Let me put you on some medications. And I'm like, like, why have we not tried behavioral interventions beyond just like, maybe, you know, and I'm not. I'm not going to throw IBCLCs under the bus, but I went to one who never looked in the baby's mouth, who basically told me I was holding the baby all wrong, who. You know, I'm like, so there's, you know, and then also there's feeding therapists out there that are not experiencing this either. So I think it's really tricky because we hear these things, we get referred to these professionals who are supposed to be the professional for this issue. And sometimes they don't even have the training right. You know, I know my second child, the IVCLC that I went to with the first, like, she had gone on to get additional training, which I really commend her for, because now she was looking at things through a different lens. Right? And so while with my first, you know, I didn't go to her for my second, but I knew that she was working in my pediatrician's practice and was now looking at things very differently, which is great, but we don't. How do we. How do we gauge that? Like, how do we gauge the level of knowledge? I know I just went on, like, five different tangents, but it's like, here. But, you know, going back to, like, these terms that we give babies, you know, oh, is it. Do you have an easy baby? What? Like, define an easy baby versus a challenging or hard baby. No, no, it's just a baby. It is a baby. And the whole concept of, like, oh, it's just a little tie or just a mild tie. We don't need to do anything about it. Or, you know, like, what? No, I'm sorry. Either we have a tie or we don't. This whole, like, level of, you know, scaling the tie from mild to severe. It's irrelevant how mild or severe it is in appearance. It depends on how much it's impacting the functional ability of this baby to survive and feed, breathe, and sleep and, you know, anyway, so I know I could go on a much longer tangent on all these things, but I know that you've had posts on these things, too. Just like I have. I was like, we have got to have you on this podcast because I get it. As a mom, you're doing such great advocacy out there for other moms to connect with you. And it drives me crazy when I hear, you know, are there medical things that can Cause low supply for a mother. Yes, absolutely. But most of the moms that I hear say, oh, I was just told it's my supply. I'm going to anybody look in your baby's mouth. And they're like, oh, why? Why would they do that? I'm like, maybe your baby's not demanding enough milk. Maybe your baby's fatigued too quickly because they can't pull the milk. Maybe they only get to a certain point and that's why they need to frequently feed. But that's also teaching your body how and when to produce milk. And it's not efficient. And it's not, it's not a U issue. Like, you know, again, not discounting that there are reasons why mothers maybe have low product, low supply, but a lot of the babies we see, it's not a mom supply issue.

Right? Yeah. I think it's really so important to acknowledge and go back to the terms that you noted or even more broadly perhaps phrases. If a baby is colicky, it's because they're uncomfortable, something's wrong, they're communicating. Right. It takes energy to cry and way more energy for babies to cry for hours in a day. So that I remember having like this aha moment at some point thinking like, but wait a minute, it actually takes energy to cry. So couldn't it be that Nahri is crying because that's how she communicates and she's communicating that something is wrong. So like, I really reject the term colicky baby. Colic is a thing, but it is a symptom, right? It is not a diagnosis. Right. Same thing with reflux. Like reflux is a symptom. If a baby is experiencing reflux, there's an underlying cause, There's a root cause for it. Are there scenarios where perhaps the reflux is so severe and significant that maybe a baby has to be put on medication? Absolutely. Maybe, sure. You know, hopefully temporarily. But again, there's an underlying cause. And you know, as you know, these scenarios are not always caused by ties, but a lot of times they are. So to across the board, dismiss, discount, cast aside, is really detrimental to the health and comfort of families. Not just infants, not just toddlers, adults as well, parents as well. So when we, when we use these terms, colicky baby, reflux baby, lazy feeder, Mari was, was given all of those titles. She was a lazy feeder. And I remember also thinking like, well, evolutionarily that doesn't make sense because like a baby's job, right? Their instincts tell them to survive. Right? Their instincts tell them to survive. So much that they have the ability to crawl, to get to a nipple, to feed right out of the birth canal. So it didn't make sense to my brain at all that then somebody would suggest that she's just lazy. She's too lazy to eat and what. And actually, when we met with the entire, you know, he. He quickly dismissed that Mari, the first ENT that. That we saw. I should say so. Quickly dismissed that Mari had a tongue tied. There's no way. No way that she had a tongue tie. But she did have a lip tie. But ties don't cause feeding issues. And. Oh, I forgot where I was going with this.

Oh, well, about that. I'll share my ent. My ent? Oh, yeah. I mean, when I came back from my first mile course, and I flipped Lily upside down, and I was like. Like, I gotta look in this kid's mouth. And I saw that she had a lip and a tongue tie. And I was like, you've gotta be freaking kidding me. Like, why didn't. Like, we were going for weight checks. We were going. I saw an ibclc. Like, so I take her to the ent, the first one who's supposed to be the release provider. Like, ENT release provider in the area. And she's like, well, you're not breastfeeding anymore. She's 24 months old, so we don't need to release those ties. And I was like, stop the madness.

And she.

Like, I've referred patients to her. She knew who I was. She knows what I do. And she knew that I had just taken a mile course and that, you know, so here I'm like. I'm, like, trying to hold back the tears because I'm like, well, shoot, like, the person who's supposed to get it in my area doesn't actually get it. Like, mind blown, you know? Mind blown. I, like, I just like, where do I even go from here, right? So then I take her to another ent. This ENT is supposed to understand MYO doesn't necessarily release infants, but does do, you know, tonsillectomy, adenoidectomy, understands airway. And I'm thinking, like, he's. He's got to get it right. So I take him. I take her there. They, you know, he sees her. We have a whole conversation about, like, MYO study clubbing and, like, all the things. And, like, yeah, this is the guy. And they have her hearing checked and, like, all the things. And he's like, yeah, you know, And I wasn't really going actually to him for the release Because I didn't think he was going to release a toddler at 24 months. I did not want to put her under general anesthesia, but he took a look at her size three plus tonsils, and his exact words were, I'm unimpressed. And I was like, you're unimpressed? Like, I didn't say that to him because I don't want to be rude, but I was like, I don't even know what you mean by that. You're unimpressed.

Yeah. What does that mean?

Okay, well, we have enlarged tonsils that are veiny looking. But his whole thing was, well, her mouth is usually closed at rest when awake. And, you know, you're telling me that she doesn't get sick that frequently. So she's not like a chronic, like, you know, case where she's getting sick all the time. So, like, I don't think we really need to do anything about it. Like, basically no course of action. Zero. None. Not like, hey, come back in three months. Let's just monitor them. Nothing like, hey, maybe, you know, not that I want to put my kid on antibiotic, but like, no. Like, even suggestion of that. Might be a possibility. Might be a possibility. No suggestion of. Let's do a scan to look at our adenoids. No suggestion of. Let's. What was like, what was my other one? Let's use like a nasal spray or something and see if that shrinks the tonsils. Nothing. Nothing at all. Which I know are all viable options from other entities that I've spoken with at this point. And I left there being like, well, that's the end of the road. Like, there's nowhere further to go based on that conversation. I mean, okay, I've now been to two ents, one specifically for ties, one specifically for the airway, neither of which see an issue. And they're supposed to be the go to people in my area. Like, you have got to be freaking kidding me. I was pissed. Then I went to my oral surgeon who I had referred patients to myself, was starting to, like, develop this, like, you know, relationship with. And he was like, well, you know, her, her lip. Like, I'm not convinced that we need to address the lip right now. Like, it's not impacting her rest posture. He's like, but I definitely feel like we should address the tongue. And I was like, okay, I disagree about the lip, but you're the provider and that's not my call. That's out of scope for me to decide. I'm like, from an Open cop at 24 months, she dumps it all over herself. She can't seem to figure out the oral motor pattern. And she doesn't have any apraxia. She doesn't have other oral motor issues. You know, she's always. She actually was like my tight baby who actually hit milestones early, I think, because tight that, like, she was early six months of age, independently crawling up the stairs. Seven months in age, backing down the stairs and off of furniture. Like, I showed her once, and boom, she had it, like, how to get a low couch that we had on our deck. And as soon as I showed her how to do that, like, she had the motor pattern for crawling down an entire flight of stairs. That was like one little step, basically, compared to, like an entire flight. And I was like, oh, gosh, shoot. Why did I show her that? Like, I'm like, all of. She was the kid at, like, Little Jim who was going independently up the rock wall, flipping herself around and scooting down on her butt, like, down the other side. And people. How old is she? I was like, she's nine months old. And they're like, what? I was like, I know. I. Like, she's. I don't know what to do with her. Like, what is going on? Well, I later learned she was so tight that it actually, like, you know, to some would say, like, okay, it benefited her gross motor development and either kept her on track or even a little ahead of the curve. But everything else, like, now, she had a tight neck with feeding. She could hold her head up at birth. Not normal. She had a side preference with breastfeeding. Not normal. Like, I was in pain, she was struggling. She was a frequent feeder on the breast for 40 minutes, 45 minutes for every feed, with maybe an hour break in between because she wasn't pulling enough and she was fatiguing. But she was then kind of just hanging on me because we did. And, you know, I would pump on one side while she fed on the other because she preferred the one side over the other. And, you know, I wanted to create a stash for the freezer so I could go back to work. And it was like, all the things. But, like, when I look back at this experience and that journey in the first year and then to still be having these struggles when going to providers when she was 2 years old and, you know, finally to find the oral surgeon who did release her tongue, her constipation disappeared overnight. It was gone. And I was like, what?

What?

Like that. I mean, it's gotta be related. Cause this is something We've been struggling with like pretty hardcore since introducing solids, so. Whoa. But yeah, you can't make those claims. And then to see, you know, her evolve and how she changed and even from a sensory processing standpoint, from the point that we had our tongue released, the point that she went into early expansion at age 4, about like halfway through her ALF appliance, she started trying new foods and she, her, her tonsils shrunk. And I've been yelled at professional groups for making that claim. And I'm like, here are the photos, here are the dated images. Tell me that her tonsils during cold and flu season did not go from a three plus to like a one. Tell me that. Go ahead. Here's the pictures. The only thing that we still eats dairy and gluten. Despite the fact that I would love her not to have as much as she does, knowing that she's got enlarged tissues. I'm like, while eating that stuff during cold and flu season, she's looking pretty dang good. Do we think baby related and growing her palate and giving her the opportunity to properly nasal breathe where she didn't have the opportunity before? I don't know. I'm just going to throw those things out there. But don't try to make these claims.

You know, heaven forbid. We think maybe there's a, there's a connection there.

Right? So it's. And now there's actually research that's proving everything that I've claimed. And I'm like, I mean, and that's where you go back to. Like you've talked about following your instinct, following your gut, following your intuition. And I've always done that. But at the same time, I didn't always trust it. And you know, I'm not, I'm not a dental provider. I don't move hard tissue for a living. I work in the soft tissue arena. So I can't make certain claims. Right. And I can't even give advice on certain treatment plans because that's out of scope. I can't say your child needs an elf, but I can say you should go to the dentist and have a consult to see if your child would benefit from expansion. Because my child did. You know, I can see like that. And to have that discounted by other professionals was just like, it's enough to get it, like as a mom, but then to get it from like professional colleagues too is like a whole other level. I'm just like, we be supporting these children. Instead of being so dismissive, we should be asking, why are these things Working or why isn't it working? And what is the root cause? Like you said, there is a root cause. And our medical industry is. They're infamous for just slapping the bandaid on it. Slap a band aid on, here's the medication. Slap a bandaid on, try this. Slap a band aid on, try that. Instead of taking the time to send you to the right practitioners who can help you truly get down to the root cause. And we are seeing in so many of these babies that root cause is that tiny string under their tongue and their lips, maybe the buckles. You know, it's like, why are we still so divisive? Why is there still a. Why are we not helping these babies? Because if you're going to see, in between helping the babies, I really, I just, as a professional, like, a professional, from one professional to another, you are standing between a baby thriving and surviving and basically hoping that baby just figures out how to compensate really well for the rest of their life. And to me, that's. That's great. Cruel and it's malpractice, honestly, throw that out there.

Yeah. No, there are like, so many things that you touched upon that I'm like, oh, my God, we should talk about this. Oh, wait, I want to talk about this. So I think to, like, streamline my thoughts in wanting to respond. I think first, I want to just acknowledge that, like, obviously, and you know, this, but obviously it's not just babies that are impacted by this. And I think that's a struggle that a lot of people have, including clearly that second ent that you saw. Because the challenges that we see in infancy are usually just the start. And we talk about it so often now, I think, and we see so many. I mean, I have a lot of philosophies on why we see so many, you know, ties and struggles right now. But I do really believe that we are in a moment that allows for conversations like this to happen at a very loud volume, even if. And even when there are many people who don't want to hear them. Yeah. We have social media, which certainly can be, let's be honest, a crapshoot. Right. Like, sometimes it's just really unhelpful.

Yeah.

But it also means that a mom like me, in the middle of a global pandemic, who's in quarantine with a newborn at 3am can find another mom's blog talking about how she and her baby three and a half years ago experienced the same exact symptoms. Right. Or through Instagram, we can find resources like you. And so I Think that when we're talking about just like finding the path to go and coincide with our intuition, it can be really different for everybody. Finding the proper resources can be really challenging. And whether a child is a day old or 5 years old or 13, like, it can always be challenging. And I think that that is such an important thing to just acknowledge in general. You also noted and said in just a little while ago that Lily. Yes. Experience a different sensory things. So I kind of just want to touch upon that because. So we learned a little late in his life that my nephew, who is now four, has. Has ties. And he was exhibiting some really interesting symptoms that I don't think most people know or realize are always or can be linked to ties. And that included some, like, food sensory struggles, some add, adhd, like, symptoms. Mari, I suspected, actually was having some sensory struggles around. I sort of always suspected it, but really around like seven, eight months. I was like, okay, yeah, she definitely is. Specifically, she would not allow for us to touch her hands or her feet immediately. She would just pull back. It was like an instant intuitive reflex that she would do. And yeah, yeah, yeah. She was just always. She was first, always very, very tight. I talk a lot about that in general with not only other parents that I'm trying to help, you know, just support and walk through the process with, but also just on my platform in general. I talk a lot about tension and what is so interesting about this, and I want to note it and share. So we actually have had two separate release journeys with Mari so far in her life. The first was when she was 10 weeks old and we addressed her posterior tongue tie and her upper lip tie. We knew again at the time that she had some upper buckle ties, but her tongue tie and lip ties were so severe that we just knew that that was really the root of almost everything she was experiencing. Similar to Lily, within about a day or two after her tongue tie release at 10 weeks, Mari's constipation went away.

Isn't that magical?

Yep. Imagine that her colic stopped. Stopped her explosive. She, Mari, would go through bouts of extreme constipation and then an extreme blowout. All of that stopped. And my. My husband and I used to laugh at how loud she would pass gas. We would be on the opposite end of the house and hear it, and that all stopped magically. But I want to fast forward to her second round of releases that occurred when she was 14 months old. We had to address her upper lip tie again. And we also realized at that time that her buckle ties were actually causing some serious struggles for her. Her upper teeth were coming in and her molars that were just behind her buccal ties were. They were pushing through. We knew that she was teething, but we didn't see them. And she was a cranky little beast for like two and a half straight weeks. And it was so clear that she was cranky because she was just in pain. And it didn't really make sense to us that this was the process that we were. That she was experiencing because normally, you know, you know, they're teething, they pop a tooth within a couple of days and it's fine. This was not the case for her molars coming in. And so we learned that not only did it seem like the excessive tissue that was her buccal ties were actually potentially causing her molars from. To, you know, not be able to come through, but also that it was causing her tension. So we addressed her buckles and her upper lip tie when she was 14, 14 months old. Immediately, immediately. Mari went from never wanting us to even wash or touch her hands in the bath or at a sink to her, quite literally pushing her feet out for me to lotion them every single night and massage them.

It's amazing what happens when we take a child out of fight or flight and put them into what we call rest and id, like when you allow the nervous system to function properly. Amazing what kind of presents to you and that I'll let you continue. But like with Lily, a lot of hers presented in. She didn't like tags, she didn't like scenes. They weren't like, so disruptive that we, you know, couldn't go about our normal day. She doesn't, like, she'll get messy, but she wasn't a kid who loved to get messy. Like, she would, you know, play with. Play doh. But then it was like, yeah, I don't really like it, so I'm not going to continue doing it. Or she would try a food and be like, I like it, but I don't really want to eat it, which was like, very interesting, or she just wouldn't try it. And she did, as the infant, eat a lot of foods until like about 15 months and then just started cutting things out and, you know, it. We also had an interesting experience with her getting sick from having like five vaccines in one day. And I think that changed, like, the profile of how she tasted foods as well. But I think there was always this underlying sensory component that I think got majorly triggered at that point too. And when she had her release, it mildly improved but it was still a struggle in turn. But once she had the expansion and like along with that release that we did everything that didn't start to do the myo. That's where like I think the seams that like that sensory response to the hands, the feet, the tags like that died down a little bit more in toddlerhood following release in the foods. Like you know, she would eat a certain variety. I always joked if it didn't have cheese or car like bread, she probably wouldn't eat it. I mean that was kind of like her but holy cow, let me tell you now, like she as a six year old who is now post release, post expansion back in some myo just to fix her like frontal lisp at this point. Like her oral rest posture is generally good. It's like more the swallow and frontal lisp quality that we're addressing the girl. Like she is just eating every. She had corned beef last weekend. Before that she tried prosciutto. I was like, who are you? And like what did you do with my child? And she loves salt. No wonder she likes deli meats but you know, loves bacon but will not eat chicken. Will not eat like, you know, she'll eat fish sticks now and she's slowly like my mom made like fish or I'm sorry, my mom made like homemade chicken tenders and she will eat them whereas she would not have touched a ten foot pole before. And just to see the evolution and how quickly it's happening now that she's had all the pieces of the puzzle put into place for her is like, holy cow. Even I as a therapist who would throw these kids into feeding therapy without looking at the root cause, like without figuring out why they present this way. And sure, we worked with OT to address cranial nerves and other integration of the systems and the nerves and all the things. Like we were, we thought we were looking at it from that perspective, but really even our therapy to a certain degree was slapping a band aid on a much larger issue. And it wasn't until I fell into the world of tots and myo that I fully had an appreciation for. Oh my gosh. Like these kids that end up in therapy for life for a speech disorder, like teenagers that come to me and that I have a tongue tie release and graduate in six months after having seven SLPs and 12 years of therapy.

What?

You know, these kidding adults who are fatigued because they're realtors and they're tired after one 30 minute phone call and they have a tongue tie release, and they no longer experience that fatigue and then realize that so many other aspects of their life were actually impacted that they had no idea were impacted until they then experience a different quality of life. You know, so. And those are more mild cases, you know, like, we have some more severe apples, too. It's just like you said, it snowballs, right? But to see it all evolve from these little minor. What we seem like is like, little minor sensory issues of these kids. And if a child presents with sensory issues, if a child presents like adhd, like qualities like you mentioned, if a child presents like they have trouble with attention, focus, you know, they're impulsive, they're picky eaters, they're messy eaters, they're cutting foods out. They're. We need to be looking in their mouth. I mean, and the list goes. They have speech issues, they have delays. We need to be looking in their mouth, we need to be looking under their tongue. We need to be checking their cheeks. We need to be checking their upper and their lower lip, because there are seven places that we could potentially have oral ties. And then what I learned, which was really interesting from Ron Ruska, who is. He's behind Postural Restoration Institute pri. A lot of pts can go and get trained through pri. He offers courses for other professionals, too. What he was like, we have ties throughout our body. It's not just in our mouth.

And I was like, oh, okay.

I mean, I was like, I've always said we're tied from the. We're literally connected from the tip of our tongue down to the tip of our toes, like from a fascia standpoint. And when you start to think about it, and then you start to think about how if we are truly tethered and maybe this. This little tether in our mouth then pulls other things up and forward or gets the, you know, creates tension throughout the body, it's no wonder it's putting pressure on nerves. It all starts to make sense if you understand science. But if you start to read about anatomy and physiology, you kind of start to go like, oh, why is nobody talking about this? And why are we through so much therapy that. And I know this will piss off other practitioners, but, like, why are we putting them through therapies without looking for that root cause? So I'm going to turn it back to you so you can talk more about, like, the sensory stuff that we were talking about. But it's like, it just sends me on these tangents because it just makes so much sense. And we don't need 5,000 research studies to prove these concepts. No anatomy and physiology. That is the science behind what, what happens when. If you understand normal, we can understand deviation from normal and then we can understand what we're working towards getting back to so that people can properly function and thrive in life.

Okay, drop my never end rant in general. Don't. Yeah, I mean, I think, oh, wow, there's, I mean really so many, so many things to say. I think I want to, I think I may want to actually share with you and anybody who would be listening to stories from adults that have been shared with me that really changed sort of my understanding of long term impacts of ties and how often things are missed. So I spoke with a mom who shared with me that her son had not really had to her knowledge, feeding issues ever. That his issues really and struggles were really around not even speech, but that he had always a. I believe it was his right foot always turned inwards. And he had been to physical therapist after physical therapist after physical therapist since the time he was a year old. He was then when I, when we spoke, he was seven. He had been to therapist after therapist and consistently. What would happen is he would go to a new therapist, they would work with him, they would see progress, and within a week after that progress was made, his foot would turn back in. And so as parents, like his parents and even pediatrician, they were experiencing frustration. Why can't physical therapists figure this out? Why can't they, you know, work their magic in a way that fixes the problem? Why do we always have to take him? Why are we, you know, constantly spending money? So they would stop going and then it would get worse and they'd find a new physical therapist. And I don't recall who diagnosed him with a tongue tie. I don't remember what the scenario was. But at some point in their journey, when he was seven years old, somebody connected the fact that he had a tongue tie with this struggle that he was having with his foot. And his mom shared with me that she was like, I honestly thought they were insane.

I thought we connected our toes, right?

Why that, how, how would that even remotely make sense? And. Yeah, yeah, right. And, but I guess, I guess they decided to like release his tongue. And, and the way that she described it, she's like, we didn't do it necessarily to fix his foot, but it was, you know, thought that maybe that could be a benefit. And she shared that within a day his foot no longer turned in. It had been like six months and it has not Been a problem since.

So we were literally connected from the tip of our tongue down the tip of her toes. And I love.

Yep, that proves my point. Yep. Such an interesting, it was such an interesting learn for me in that moment to think like first as a non medical professional, to think essentially like, what are what, how and what? Like I did not study anatomy and physiology. Like I am a designer, like how I'm not in that world. So that was just like, so mind blowing to me to think that there could even possibly be a connection. But the moment that she shared it and I started researching about, you know, the facia and how your system is really all connected, I as a non medical professional was like, that makes so much sense. That makes so much sense. So, so for me as a non medical professional to see and acknowledge, like, oh, that actually does make sense. That in my mind leaves no excuse for any medical or health professional to not be able to make that connection. So there's that, there's that. I'm just gonna. I just said it. Another, another scenario that I actually learned about was a woman in a local moms group. She's in her 40s now and at some point it was on social media because you know, during a pandemic, that's where most of my life has been. But we, there was a group of moms just talking about speech struggles. And of course, like, you know, now that I'm within this, you know, sort of tots sphere, if you will, my ears beat it. They're like, what speech issues? What, what's happening? Huh? What? And so I'm reading through these comments and this, this mom who's now in her 40s, shared that she actually had a severe tongue tie. And what she shared was shocking to me. And she said that growing up she did not understand why people talked. She didn't understand why anyone would want to speak because it hurt. She was mute until she was six years old. She never said a word until she was six. It was discovered she had been through a lot of different therapies and it was discovered at some point somehow those magical unicorns existed in, in her area. And she found somebody who said she has a tongue tied and she probably, it was mute.

Like they probably gave her a diagnosis of selective mutism, which makes me go, yes, exactly. Mouth that I've ever seen that occur to. Because worked with. I know early on that had that diagnosis, had a tongue tie and a lip tie, had a myofunctional disorder and needed expansion, went into an alpha appliance and I'm sitting here going like, duh. Why did I make that connection?

Yep.

Yeah.

She. She was diagnosed with selective mutism. And. And so what she shared. And she was basically, like, encouraging this mom to go forward with speech therapy, but to make sure she's finding the right resources. And so she shared that, you know, at some point when she was six years old, it was discovered she had a tongue tie. They addressed the tongue tie, and she said that she remembers being done with the procedure and looking up at her mom and saying, mom, I can talk full sentence. Yeah. Let alone a single word. Right. Like, she. She said a full sentence, and she remembers her mom just crying. Yeah. And, you know, I think that what's so challenging for me in this realm is understanding the really significant impact these struggles have on health and comfort. Yes. Yeah. And for any medical or health professional to dismiss them, I thoroughly believe is negligent.

I agree. I agree 100%.

Yeah. Yeah.

And I think we all need to do better. I mean, I know we've spent a lot of time talking about, like, Mari's experience, your experience, you know, Lily's experience, my. I had a tongue tie. You know, my. These other stories that we've shared. And I think what it goes to show is if there is this much of an impact, like you said, it is completely negligent at this point to be dismissive or just completely ignore. You know, it's one thing if you haven't been trained. It's another thing if you have been, or somebody comes to you and says, I think this is going on, and you dismiss it. Regardless of your level of patient as a provider, you have signed something that says, I will do no harm. You have a due diligence to that patient to go and research it. And if you're not willing to then refer them to somebody else, you know, specializes in this and who can help either rule in or rule out that diagnosis, and that's all I will die on. And, like, I think we can even wrap up. Wrap up on this note because, you know, it is complete negligence if you are choosing. That is a choice. If you are choosing to believe old beliefs and you are not connecting them with the specialists that they deserve and need to thrive, that is negligent. Period. End of story. Yeah. So on that note, thank you. Thank you for your time today. Thank you for sharing your story and your experiences. And I know everybody can follow you on Instagram at the unbound network that you know what you're doing. You know, to me, it doesn't matter that you're not a professional in this space. Like you are taking your story, your experience, your experience, you're sharing it so that other moms have a safe place and a knowledgeable space to connect. And you know, I love seeing information out there. One, that's accurate because you have a lot of accurate information on your account. But two, it's like personal experience that other moms can relate to. They know they're not alone. They it gives them information that they can then go to Google Scholar or just Google in general and research further and then they are empowered to take this information and questions back to providers and get answers for their children. We should not have to fight this hard as parents, but unfortunately that is where we are still living in. And that's why I always encourage people to DM me and I will do my dang best to connect you with a provider I know who is airway taught myo centric. That's if we can start you on the right path. Like to me that you're going to get what you need if you connect with at least one right person in your area.

So anyways, thank you.

Thank you for your time. Thank you hearing your story. Yeah and I will see you on the gram.

Yes you will. Thank you.

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