Episode 74 : TOTS ~ A Family Affair With Lindsey Leuwen

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'm your host, Hallie Balkan. I'm a certified orofacial myologist, feeding specialist, SLP 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, 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. Today we have Lindsay Lewin joining us. Lindsay's a mother to two tied children. She's a tethered oral tissue and airway advocate. And Lindsay embarked on her airway journey in 2014 when her oldest child was referred for early orthodontic intervention and tooth extractions by their general dentist at the age of six. It is her goal to empower parents, especially mothers, to embrace a central role of team leader in planning and managing treatment of tether, dural tissues, sleep disorder, breathing and craniofacial growth in children. Lindsay's philosophy of care planning is rooted in the belief that the intrinsic wisdom that is birthed through creation should be trusted above all else. Lindsay, I am so excited to finally have you on the podcast.

Welcome. Hello. Thank you.

Absolutely. So we're just going to jump right on in and talk a bit about, well, one, why you're on here. Like, what do you, what you're going to share with us today. But let's start with you. Like, tell us a little bit about your backstory, your history.

So, you know, I was one of those kids that like, couldn't function in school and I was always falling asleep in class. So I have an identical twin. She was the good twin and I was the bad twin. Yeah, you know, I did terrible in high school. And then once I got out of school and got out on my own, I went back to college and I did so well. I was just like, wow, I'm not a, I'm not a failure. I can do things. You know, I decided to go to the dental height. I wanted to go into dental hygiene because I've always been obsessed with mouths. I love teeth. I love getting my teeth cleaned. There's a ton of variation. You know, it just really appealed to me and I worked my butt off to get into dental hygiene school. I Had a four year old and I was working two jobs and going to school full time and living on my own with my 4 year old. And it was just. I killed myself to get into this program. And once I got in, I was just so stressed out. And I did great in all the coursework, but my TMJ became a huge issue. I was grinding my teeth, my jaw was locking up, I had a bunch of neuropathy in my arm and I just, I couldn't get through all the skills things because I couldn't keep coordination to use the tools that I needed to use to do what I was trying to do. So that didn't work out very well.

Right, right. So you're a straight A student, but you can't actually perform your skills. Exactly.

Failure to perform, like the story of my life, you know, just can't live up to their potential. So I. Around that time I found out our. I took my child, she was six and a half then, and we had gone for her regular dental cleaning and they took a panoramic X ray and the general dentist said, oh, her mouth is way too small. Her teeth are huge. She's never going to have room for all of her adult teeth. You need to get her into ortho now. They need to pull teeth. You're going to need braces. They're going to have to pull at least four. Four premolars and all four wisdom teeth. Yikes. And I just said, no. I was like, no, there has to be a better option. That's not, it's not acceptable. So I said it wasn't acceptable. Around that time, my twin sister had become. She was an ibclc. She had just had her second baby. She found out that her child was tongue tied and that's why she couldn't nurse. The first one was struggling with the second one. She called me one day and she was like, you know, we're tongue tied. I was like, oh, yeah, that makes sense. Your dental arch is formed by your tongue on your palate. It's not supposed to touch any of your teeth. Well, it's up there. Yeah, that makes sense why we didn't have room for our wisdom teeth. And she's like, in your daughter's tongue tied? I was like, oh, well, yeah, we had her tonsils and adenoids out. I had her evaluated for speech therapy. She had a reflux before it was reflux. They didn't call it reflux then they were just like, oh, some babies puke a lot. So it made perfect sense. And I told My sister, I said, we have to find someone that will grow her jaws. I can't pull her teeth out. The number of natural teeth you have is directly related to your quality of life long term and high morbidity. Like, I can't pull her teeth out.

Well, thank goodness you at least had that information. Like, you at least knew, right? You had that hygienist background. Like, you knew about teeth. Because so many parents are like, okay, whatever will make my child healthy. And they think that's the only way they do that. And we know. We don't want to shrink the job. We want to grow the job, right?

I want her to have all of her teeth. Like, dental hygiene 101, you know? So then my significant other and I had another baby, and the baby was born. My sister told me what to do. She already arranged for cranial sacral therapy, like, immediately after birth. The day we got home from the hospital, she came to the house on day four, we packed him up and drove to albany and had him released. And we came home and we did more cranial sacral therapy. And I thought everything was great. It was terrible.

Oh, no.

But I didn't know, you know, just like living with symptoms of ties. You don't know until you realize, oh, it's not supposed to be that way.

Mm.

So we got him straightened out. He was at breast, and we jumped right on the orthodontics for my daughter. We drove. I found somebody out of state, and that's what we ended up going with because, like, there's someone a couple hours from us. But I couldn't afford the way she wanted to do the fee schedule. So we ended up going out of state, and we. When the baby was two months old, we got her impressions done, and, you know, we're on our way. She got alf. The baby was at breast. We were making progress. And then he developed tort Collis at 8 weeks old. I took a picture and sent it to my sister, and I was like, that's not right. What's that? His head was like. He was super, like, severe torticalis and.

No signs of it prior to that point. Or do you feel like it was maybe minimal and kind of just progressively was getting worse?

No, his birth was pretty traumatic, and his head was very coned when he was born. And they all said, you know, it's fine. It'll straighten out. It's okay. Well, it did straighten out because we released him immediately, and he was able to feed at breast, but it didn't really.

I mean, I didn't know.

I thought he was fine. My other baby was tied, too, so they're both difficult. Yeah.

But I think back to, like, mine. Right. Like, I had no idea Lily was tied when she was that young. And we pushed through breastfeeding, and she was able to feed, but it was painful for me. But she definitely had a side preference. Right. Like, and I didn't know. I had no clue. I had no clue that I was, like, looking for that. But I knew that, like, whenever I pumped, I pumped more on one side than the other. I oftentimes would, like, pump on one side while feeding her on the other side. And, you know, that was just, like. That was our routine literally around the clock. So it was one of those things where, like. Was it there? Oh, I'm sure it was there. Can I say for sure no, because I didn't look for it because I didn't know to look for. Right.

I mean, I don't know. Yeah. His head was super misshapen, and it was a really long and traumatic birth, but I didn't. I didn't know. Like, we were just surviving. Yeah. I was doing. I did what you were like, we've got him feeding.

That's the goal.

Right. I mean, I was being a good sister. My sister told me what to do, and I said, yes, I will do exactly what you tell me to do, because you know these things better than I do.

Amazing.

So we did it. And, you know, there were symptoms. He was, like, lifting his whole head at birth. He rolled over, like, five weeks old. You know, he was very stiff. Lots of compensating that I didn't know was compensating. You know, couldn't lie on his back. He hated the car seat. He screamed. Screamed the whole way home from the hospital. It was terrible. So. But I didn't know. And, you know, most of the people that I know didn't know either. They didn't breastfeed either. You know, my mom breastfed us until we were three months old. And she lost her supply because you were tied. Right?

Exactly.

With twins. Twins. We couldn't effectively keep up any kind of supply, you know, and they told her it was because she was exhausted, which I'm sure she was. Supply and demand.

Right?

So. So I should. You know, I showed my sister the picture of his torticollis, and she was like, oh, yeah, no, that's. You need to get him to pt. That's not okay. So I called the local PT place. I called the cranial sacral therapist because I got mastitis at the same time that he started to have this torticollis. And she said, oh, you know, I called the craniosacral therapist. She said, yep, I treat torticollis too. Like, why don't you come on in? We went to the pediatrician. I said, I already made an appointment with these people and I need you to put in some orders for physical therapy because we're going on this day. So we went and did that. We did a bunch of cranial sacral therapy. And he was always on his tummy. It was like tummy time 247 because he couldn't lay on his back. He was in the carrier. So he got cleared from PT and cranial sacral therapy in like a month and a half. They're like, it's miraculous. This is amazing. He's doing so well. You're good to go. And we just went home and we compensated and we compensated. You know, he could only feed side lying. We were like chained to the bed until he self weaned at 13 months old. So I didn't know. I was exhausted. I had no idea. My daughter has her ALS and she's doing fantastic. Thank goodness. Like that thing was a miracle, you know, sleeping all night long. She stopped having all the restless sleep. Her attitude was great. Her face just started growing so fast. She responded so well to it.

Awesome.

But what we didn't do was the cranial osteopathy that we were supposed to do. I said, well, I can't really afford both of them. So we did myofunctional therapy instead of the osteopathy. Fortunately, now, in hindsight, it was a very gentle appliance that she was in while we were not doing what we were supposed to do. But also, if we had been, it would have saved us a lot of time and heartache and money because I would have gotten my son treated by the osteopath because she would have said, hey, no. Oh, I should treat that. You should see me for that.

Yeah.

So then he, at 13 months old, he's self weaned, which I was exhausted. So I was like, fine, you're done, I'm done. It's fine. Let's just move forward with our lives because I'm tired. And he just, he was doing really well. You know, he was advanced. He started walking when he was 10 months old. He didn't really crawl. Everybody told me that was fine.

Sounds like a combination of my two kids. Yeah, this was Mia. So Mia walked before she crawled. We took her to one OSTEOPATH appointment, actually, craniosacral one week, osteo the next week was the first time she'd gone. She'd been in PT for, like, eight months, on and off, for not torticollis, but torticollis. Like, symptoms is what told me. And I'm like, just call it what it is, people. I mean, come on. She's got a neck preference. She's tight on one side. And then just. I was like, this is not working. Like, we are trying to force muscles to move in ways that they can't. I'm watching them, like, force her knee down and try to get her to crawl up a step, step. And let's have her, you know, Wall sit at 11 months for, like, all these things. And I'm like, she doesn't want to do these things. They don't look comfortable. It's. She. There's resistance for a reason, right? And I talked to my guy who is a pt, but he does, like, manual counter strain. Like, he calls it modern counter strain technique. Very different than the traditional kind. A lot of people know. And I also spoke with Brian Tuckey, who's been on the podcast, and he. I remember him saying, like. And I don't know if we recorded this in our conversation afterwards, but he was like, no, you never stretch against a tight muscle. You always go with the tight muscle. And I was like, well, that's why all of a sudden we went to cst. Then we went to, like, a week later, we go to osteopathic. Both osteopathic doctors as a husband and wife team, they're like, she's very healthy. Everything looks great. They did their thing. And literally a couple days later, she gets up and she, like, she walks and. And then the next week, she crawled. And I almost like, my. You had to pick my job off the ground. My husband was like, well, she's already walking. Why does it matter if she crawls? And I was like, no, no, no, no, no, no, no.

Like, really important.

Like, this is so important.

Like, everything's really important.

Everything's integrating. Now.

If you can't crawl and you can't keep your head up, you can't swallow very well either. You're not breathing well either. Yeah. So, you know, he's off weaned. And I was like, okay, phew. You know, we're going to move on. Everything's going to be okay. He's going to start sleeping through the night. I'll be able to be more productive. And, oh, man, that's not what Happened at all. He just, he immediately started like regressing, you know, his head became all misshapen again. Very long and cone. He couldn't lift his head up anymore. He stopped climbing up on the couch. He had a couple of words. He lost a few words that he had. I took him to the pediatrician and she, you know, she just. Mom shamed me because she didn't have any real answers for me. She just said, oh, well, you know, boys don't talk till they're two. I said, he was falling down all the time. I couldn't keep him safe. You know, his balance was terrible. She was, oh, you know, you should really watch him better.

Really? That was her answer?

That was her answer. And I just, I was done. I said, okay, I'm done. I'm not going to ask you for any more help because this isn't working. Like, I need help, right? Yeah, I need help now.

It helps me, makes me feel like a horrible parent when I'm like literally busting my butt to try and get my child the help that they need. Like, thank you very much. Yeah, yeah, yeah.

No, I just like, I can't. Okay, I'm done. I'm not going to ask you. You're not the person to ask. I know better. I've been down this road. You don't have the answers that I need. So I just started asking everyone. And I really, like, I wasn't in the Facebook groups and stuff when he. I didn't even know there were tongue tight groups. Like, I had no idea about any of these things. My sister knew. She told me what to do. I did what she told me to do. Yeah, thankfully, you know, because it would have been a lot worse if I hadn't done what she had told me to do. So I just started asking everyone. I started asking in the groups online that I had found and I didn't really get anywhere. They said, you know, you need to call early intervention if he's having trouble in speech. And I said, there's like a list and I don't want to wait on a list. I need help now. Can I talk to somebody private now? Where I am, it's pretty like rural here. There's not a lot of private services around. It's basically just through the county. You know, there's like, I don't know, less than 8,000 people in my town. There's not a lot to go around. I didn't want to go back to the place that we had done physical therapy with. I had asked them, you Know. Do you know about tongue ties? No. Do you know about cranial sacral therapy? No. Well, why does he have torticollis? Well, it's a tight muscle.

Right?

Released. They're like, well, sometimes it comes back. It's like, well, why does it come back? We don't know. What do you mean you don't know? It doesn't sound like you get a lot of resolve if you don't know. Right.

Let's treat the problem, not just slap a band aid on it. Let's figure out why this is happening, people.

Right, Exactly. But I need to know why it comes back. Like, there's a reason for all of these things. Things.

So.

Online, I just wasn't getting the answers I was looking for. Like, this doesn't work. These. We've done all these things. I've been through all these things with my other kid. We already were, like, around these areas of treatment with him in the beginning. That's not what we need. I know that's not what he needs. Some people are like, take him to a neurologist. And I'm like, he doesn't have a brain tumor. He was talking, and now he's not talking. Like, something else is going on. We don't need it. Neurologists, they just do drugs and surgery, and he's a baby.

Right.

And seedlings don't need surgery and drugs. They have everything contained within them that they need to develop.

Right. Like, there's also these other unresolved things that I think are related that I think rule out first. Maybe let's not go dramatic here.

Yeah. So. And even my sister, who's like, my biggest supporter, was kind of like, you're being really hyper vigilant and like, no, I'm not. Something's really wrong. Like, I'm not. Something's bad. It's not okay. I ended up asking our myofunctional therapist. I don't know why. I never had talked to her about it. I had never talked to our airway eccentric dentist about it. You know, right around the time he had torticalis, he came with us to Connecticut to do the impressions, and he screamed in the car the whole way there. I didn't bring him inside. Should have brought him inside, man. And I didn't, so. But I asked the myofunctional therapist. I sent her a picture of him eating, and she's like, oh, he's got posterior crossbite, really low oral tone. You need to get him to a chiropractor right away. Like a thai savvy chiropractor right away. And I said, okay, you know, I reached out to a friend who's local and said, find me. I need the best, most Thai savvy pediatric chiropractor you've ever met. I don't care if they take insurance. I don't care if I have to drive two hours. Get me a name with somebody good. I need it now. And she was like, okay. And she did. And then right after that, we. I had convinced my best friend to take her 10 or 11 year old then to the airway dentist near us that I couldn't afford. And we went for an evaluation. And I asked her because she was listening to me. I said, you know, my son had torticalis. He was tongue tied. He's having all this trouble. He's like, losing some things. Like, I had no idea what was going on. I just knew it was really bad. And she, her eyes, like, bulged out of her head. And she got me a card and was like, you have to call this cranial osteopath. You have to call them right now. Do it as soon as you walk out of my office. Don't wait even one more minute. The minute you leave, you call her. She's really good with babies. And I said, okay. And I did. I called both of them, set up both the appointments. The osteopath booked a few weeks out. The chiropractor could see us right away. And I was like, I'm going to do everything because anything that makes sense is what I'm going to do. So we went to the chiropractor for his evaluation on a Friday, and she was super concerned. And I walked into the door of their office and I'm in the waiting room and I'm looking around. There's this huge poster that's got like a baby with torticollis baby with plagiocephaly baby arching backwards. You know, all these signs of neural tension and neural dysfunction. I was just like, man, really? Because I asked, I asked everyone, you know, torticollis, stiff neck. Should we go see a chiropractor? They're like, no, it'll be okay. So I was like, oh, all right. Yep, there's all the signs. And she, you know, she was really concerned. She was like, you need to bring him back on Tuesday. Come at this time. Like, don't miss. You need to come right back. And I was like, whatever you say, whatever money you want, I'm gonna, I will be here. We're gonna do it. And you know, I got him out of bed that next Tuesday morning when he was supposed to go for his first chiropractic adjustment. And he was just. He was just gone, completely regressed. Screaming, crying, Like, banging his head on the floor and the walls, and he couldn't swallow, he couldn't speak. He couldn't do anything. He wasn't present at all in his own body. And I just put him in a baby carrier, and I walked him around town all day until it was time to go to the chiropractor. And we got there, and I was losing my mind. And I walked in and was just like, please, you know, help me. And she did. She adjusted him, and bam, there he is.

He came back.

Yeah, right back. Hey, it's right there. Like, he's not well. You know, he's still having problems, but that was it. It was just. She adjusted his occipitals, and as soon as she took that pressure off his skull base and his brain stem, he just came right back. It was insane. Yeah. Yeah. And we were really lucky because that you can't withstand that kind of dysfunction for very long. Like, we were so lucky that it was that day that I had already made the appointments, we were already going, we'd already had the evaluation.

Yeah.

And then she was just amazing. Like, she. She knew how bad it was, and she was like, just call me. Like, you need to come every day. She saw us on the weekends. She saw us on her days off. Just. We're just, like, inching him along the whole time because we would go home and he would fall again. No matter what I did, he was always falling. His balance coordination was terrible. So finally, two weeks, two and a half weeks later, we went to the cranial osteopath for the first time. And I love our chiropractor, but even she was like, don't go to osteopath. None of them do what they say they do. And I'm like, I'm gonna go to this one. We're gonna go. Like, I appreciate your concern. I feel like this is what I need to do. And we went, and I told her about his traumatic birth and his tongue tie, his torticollis, and, you know, just all the things, the compensations. And she put her hands on his head, and she looks at me, and she goes, your son's phenoid occipital basilar symphysis is not in contact on the left side of his cranium from his birth. His skull base was open since he was born.

Wow.

And the disruption was causing brain damage and intracranial hypertension. Wow. She said it's lymph and breathing. He can't breathe and his lymph isn't moving. Everything is stagnant. His brain is just, like, swimming in toxic fluid. So, you know, the crying in the car cleared up right away. Like, after the first appointment, he had tears for the first time in his life. I'm a terrible mother. I didn't realize he didn't have tears. Like, what's wrong with me?

Not a terrible mother. You're trying to survive and figure out who can help your child.

Yeah, well, that's the thing. Like, we're doing so much compensating that we're just completely. I was completely oblivious to all these things. I couldn't see past what was right in front of me. Right. Well, you couldn't even see what was right in front of me.

Fight and flight as well. I mean, it's like you're basically living for your child, trying to figure out who can help him, who can maximize function, who can get us out of dysfunction. And. Yeah, it's amazing the things people ask you, and you're like, I have no clue. Because you're focused on this, right? I don't have time to focus on that. I don't even know I should be focused on that. Exactly.

Apparently, I don't know very much about humans that I thought I did.

You forget everything when you have a child, Even if you're, like, a childbirth expert. If you're an expert, you just forget. Everything goes out the door.

Yeah, it does.

Goodness. But that's incredible that she was the first person who was able. Who1 put her hands on his head and was able to even notice that, you know, like, you, right?

And she said. She's like, oh, no, that's from birth. You don't get that because he was falling all the time. And she said, no, that's not the only time that those tissues are physiologically, like, soft enough to move that way is during birth. She's like, no, that's not. That's from birth. You didn't do that. It's not your fault. Because he fell, like so. And, you know, just everything changed. He started. He was improving. You know, he had improvement in a bunch of areas. He didn't wake up and scream and bounce in his crib at night. He got a little bit of speech back. Yeah, he was able to eat. You know, he started chewing better. He wasn't doing great. He was still choking, but he still was like, Waking up at night sweaty and just in a panic. I don't know. I immediately I went to our chiropractor and I said, okay, so these things, all these things have cleared up, but there are still these things. Something else is wrong. It's not just this trauma. There's something else going on. I know that there has to be. I said, I'm going to take him to the airway centric dentist. It's a five hour drive. I don't care. I'm going to take him because I need him to look at him. So we had gone for my daughter's adjustment and I had told him about the torticollis and he had said the same thing. He said, you know, you have to get him to an osteopath. I said, I'm going to. He said, if you can't find one, you need to bring him to mine. I was like, okay, but we're going. We have an appointment. So we're seeing a chiropractor. Said, don't, no, you have to see an osteopath. And I said, okay, we're going to. We went back for her adjustment. I told him about the osteopath and, you know, I told him about the symptoms he still had. And I was just kind of like, I want to bring him to you. He tried to advise me so that I wouldn't have to, you know, spend the money or travel that far. And I just said, no, no. We went home and I turned right back around a couple of days later and took him. And he's in the chair. He looks at him for like a minute and a half, kid screaming. Pretty sure he has laryngomalacia.

Oh, my gosh. And nobody's picked up on this either yet.

No one. No one. Not me. Both my kids were noisy feeders. Like, I didn't know. And it was subtle. He wasn't turning blue. You know, some of these kids with laryngeal Malaysia turning blue all the time and they have all these respiratory infections, but we just, I just really, I'm an awesome compensator.

Yeah. I mean, to be able to feed a baby, a breastfeed a baby for 13 months with laryngeal Malaysia until with.

All the, I mean, and all kinds of trauma. And I'm just like, I treated these kids.

I mean, it's hard enough to get them to take liquid from any format by anybody for any certain amount of time, for any mls. I mean, it's not easy to feed these.

Right. And we didn't have, like, he gained weight fine. He had all. He was advanced in his milestones. Like, they're like, great job, mom. He's doing good. Nothing to worry about.

Holy cow.

Yeah. And he's like, you have to take him to an auntie. And I said, I don't. A Thai savvy ent. And I said, I don't know. I don't know any Thai savvy ents. That's a joke, right? You're joking. That's not a thing.

There's only, like, a handful of them in the entire United States.

Who do you want? I was like, I don't even know any. I've never even heard of an airway centric ent.

I don't even know what that is.

And he gave me a card for one in New York City. And he's like, you're gonna have to go to this guy. I said, okay, I'll go. I'm gonna do whatever I have to do. I went home and I called. They got us in a couple of weeks from a cancellation. And we went down and he scoped him, and he said, well, you know, you can't see the laryngomalacia if it's the epiglottis. You can't see it on a scope because they're crying. And when they're excited, the tissues are excited. They don't flop in. But he said, I believe you. Let's do a sleep study. We'll do a swallow study. You can do them at home, like, near your places. Take these orders. Go get it done. So I did. And, you know, we're still doing body work the whole time. We're seeing the chiropractor three days a week. We're seeing the cranial osteopath every week and a half, which I ended up. I was just like, he needs more. I know you guys, because a lot of times, cranial osteopaths don't treat babies.

Frequently enough for a couple weeks or every three weeks. Don't do any other treatment. In between. Is like, usually what? Like, that's with Mia. They're like, stop. Pt. Don't do anything for three weeks and then call us back. And I was like, okay, right.

But these kids are feeding, like, 12 times a day. You know, every 10 days, it's 120 times. And they're compensating to eat and to breathe and to survive way more than we're compensating to do it. So I just said, no, we need more treatment. And she, you know, she thought about it. They always think about it. The. She's very reserved. She was just kind of like. And then we went back and she was like, okay, yes, we'll do it every week. So, yeah, we went for the sleep study, and his ahi was one and a half. I don't know what he's doing out there. Hang on. You'll have to edit this part out.

No worries. All good.

Maybe he's done using power tools. So we went for the swallow study, and I don't really know that that was necessary. I probably could have saved him the radiation from that because I could hear him aspirate what we saw, you know, and I was looking at the X rays with the speech language pathologist, and I was like, oh, look, you know, the back of his tongue is going up. I know he's got reattachment. The cranial sacral therapist had said he had reattachment. And we just decided to leave it. I was like, I'm not going to do anything. Like, he's feeding. I'm not going to cut him again. We're just going to leave it and we'll deal with it later. Because my other kid survived with a tongue tie, you know, eight years longer than this kid did. And she was okay. It's just like, that's not my. I'm not going to worry about it. So there was some aspiration on thin liquids. We heard back from the ent. And he goes, yeah, you know, I think with how many arousals he had, because he had very frequent arousals. His ahi was one and a half. You know, any of those breathing disruptions in a pediatric sleep study is considered pathologic. Yeah. So he was just like, yep, scheduled surgery. We're gonna do it. He got us in surgery. I think it was like four months after we did the tests, we went for surgery, and he came out of surgery. And, you know, it wasn't. It wasn't pleasant, but it had to be done because he couldn't breathe.

This was for the laryngo. Malaysia. Yeah.

He had. They called it every time. So all my daughter, my son and I have all had this surgery, and every time we. One of us has it, it's called something different. They called it laryngoplasty. With his. He removed a good portion of the epiglottis, and he came out during surgery and showed it to us, and it was the most horrifying thing I've ever seen in my life. Like suffocating on your own body. Yeah, it was Bad. It was bad, so I'm glad. And I had taken him to the pediatrician to sign off on his physical form, and she was really upset with me. She was like, well, why are you going to this doctor? You shouldn't go there. You should go to this person. They don't know anything about tongue ties. I don't want to go there. Not gonna go there.

Why is she deciding where you go?

She's not.

Why does she think that's her job? I don't know.

Well, that's what I'm saying. Well, when we went to Albany, she was like, yeah, I wouldn't recommend that. The ENT can do it, but, you know, you can go if you want to. I was like, well, I'm gonna do what I want to.

Really thank you for your opinion. I did not.

Yeah, appreciate it. But I didn't really ask you. I just said that we're gonna do it so you could put it in his medical chart.

You're like, so far you've given me this much helpful advice. Yeah, I'm gonna do my own people. Thank you very much.

Well, she goes, why didn't you come to me when he was having all these problems?

What? What?

What?

What? No, why would they come to you?

Yeah. Well, she had a PA with her when we had gone back to get. She had, like, someone observing, so she was pretty calm and collected. She called me from her home phone number two days later in the evening and was just like, what? What are you doing? Don't you know that kids that have this surgery can't swallow? They have terrible problems afterwards. She's like, why didn't you come to me? I said, you blew me off. She's like, no, I didn't. Yes, you definitely did. No, you definitely did.

Yeah, I don't think I could be your doctor.

Well, we're going for surgery on Tuesday, and I expect that with everything, if I were to need something after the surgery, that you would be there for me, considering our surgeon is five and a half hours away, so we're still there. She's stuck with us.

Do you have a lot of options in your area or not? No, no. It's a small town, right?

There's two pediatricians in the whole town. And now, like, any pediatrician that I got try to go to is going to be like, I don't want to deal with you. Like, no, this file, I don't want anything to do with. You know, they want easy. They don't want complex kids.

Yeah, we have a lot of options. Where I'm at. So, like, Like, I could bop around if I needed to, but if you're in a rural, rural area, like, not an option.

Like, I mean, I tried to find other pediatricians. I called private pediatricians, and they were like, you live too far away for me to be comfortable overseeing your child's career.

I mean, it's a valid statement. At the same time, it's like, okay, well, I guess we're stuck with the current one, right?

I was just like, well, I guess I'm just gonna be the general practitioner for everything, right?

Mom, case manager, gp.

I'm the team leader fan. I piecemealed it all together, and I'm leading the way.

Oh, my goodness.

Yep. So she didn't want me to have surgery. We went through that. It was the best decision I ever could have made. I had never, never in my life heard breathing that was so fluid. No pausing, just in and out. I could still hear it. Not supposed to be able to hear it, but it was not clearly obstructed.

So.

And right after surgery, within 48 hours of surgery, I took him to the cranial osteopath and she, you know, did her magic voodoo things, and his whole head got wider. Wow. The entire head expanded. And he just. He really started improving, gaining back his milestones. And we're just. We just keep inching him along, just keep carrying him along. We're, you know, going outside as much as we can, doing crawling at home. I did all the diet stuff. Gluten free, casein free, soy. I forced him to eat hard food, like, I starved him out. Because I know some kids, like, I know some kids are happy to starve, but my kids are not happy to starve. They're not going to tolerate that. They want to eat. So it took a few days, and it wasn't pleasant for everyone. But he started chewing and started using his mouth like he was supposed to do, and it made a big improvement in his feeding and just his breathing and his general. His general, like, overall motor skills. Just everything.

Yeah.

So it was worth it.

And, well, it sounds like for him, you almost had a pattern interrupt.

Right.

It had to be like some big disrupting event where, like, you knew your child, you weren't actually going to starve him, but you were like, I'm not going to. To let you continue to eat these soft, mushy things that you had to eat before because you couldn't physically eat them. Now you have the abilities and, like, I know you can do it. So let's, like, Totally pattern disrupt here. And we're just going to wait you out a little bit.

Yeah, I'm just going to wait you out. I know you can do it. I showed your nervous system that you can do it and now you're going to do it. I'm going to make you right.

But you had all the supports in place too, so. I did. Yeah.

Yeah. So, you know, we did. We did. Got healing bone broth and whole foods and just. And I'm like going to local farmers and being like, I need to buy some chicken parts so I can make bone broth at home. And I'm going to the farmer's market at 5am to get all the whole foods as fresh and organic as I can. So we just did everything. I did everything I could think of doing. I put him back on. Oh. When he was first started regressing, I put him back on breast milk. I got donations. I went into one of those Facebook groups that my sister told me about. So I was like, well, he stopped breastfeeding and this is when these things started happening. So at least I can do this. I know there's stem cells in that. I got breast milk donations. So he had his laryngomalacia surgery and he was doing really well for a while. And then he wasn't sleeping again. Started having trouble again. We did another sleep study. His AHI was still over one. We decided to release him again. So, you know, I talked to the chiropractor about it. I talked to the osteopath about it. I really like depending on my body workers to decide when to do surgery, soft tissue surgery. Because, you know, those people are the people that clean up the mess right now.

They'll know if he's best prepared for it, if it's an optimal time for him.

Exactly. If his system can handle it. If it can't handle it. And it was just. We had to, you know, he was not breathing to the point where he was standing up in bed in the middle of the night, not breathing at all. And then he would scream when he started breathing. It was. It wasn't good. And I was like, I'm not going back.

Yeah.

So we ended up. We did end up sedating him. And when I was. We hired a private anesthesiologist to do the sedation in office. How old?

Called me.

What's that?

How old was he when you did the second release?

He was two and a half when we did the second release.

That's a fun age. He's three and a half.

Now you said, yeah, he's three and a half now. Okay, two and a half. And the anesthesiologist called me, and he took a full, you know, patient history as about his birth and all the things. And he was like, laryngo Malaysia. I said, yeah. He goes, oh, was he intubated at birth? And I said, no, he was not intubated at birth. He goes, well, then he inherited it. Because you only get laryngeal Malaysia from trauma or because you inherited it. I was like, oh. So as soon as my daughter's ALF came out, all of her sleep apnea symptoms came back. I was like, oh, okay.

Okay. So we've grown the jaws, and your. Your airway should be nice and wide now, but it's not.

You're still not breathing in your sleep. Yep. So we did his release. And, you know, it was the dentist that we went to works closely with a cranial osteopath. And that's why I chose to go there, because I wanted someone that really understood the cranial structure and was going to be very careful because he had so much instability in his skull base. And I know, you know, that your tongue inserts into your skull base and your upper lip and buckles go into your C1, you know, and your mandible supports the cranial base. So I wanted to make sure that who we went to really understood the mechanics and the balance of these systems.

Yeah.

And I thought he was just gonna do his tongue, and that really wasn't what he did. He did, you know, the whole dental arch pretty much. And I was like, okay, I trust you. That's what you did. We're going with it. I took him home. I took him to the osteopath. She put her hands on his head, and she's like, oh, my God. This is the best release I've ever felt. Like, this is amazing. It's perfect. His sphenoid basilar occipital symphysis has never moved so freely or been so balanced. This is crazy, insane and amazing. He balanced my son's cranium with this release. And he, you know, he had been speaking, but it was pretty much like apraxia. He couldn't really say anything. He couldn't form words. He was trying. He would get exhausted. You know, he just. His body wouldn't do what he was trying to tell it to DO.

And within 6, incrimination was definitely off.

And he. Oh, yeah, it was bad. You know, just everything was really restricted.

Yeah.

And within six weeks of his release, he Was speaking full sentences clearly.

Isn't that fascinating?

Not his tongue. The tongue was, like, insignificant. The first dentist we saw did a really good job with his tongue.

Yeah, but you did also re. Release the tongue this time, too.

Yeah, they. I mean, he did because he was under anybody. And I kind of. And it's reattached because I didn't stretch it well enough and he had stitches in, and I was more concerned about keeping the rest of. Yeah, yeah. So. Well, probably one day, but I'm going to keep that one in my back pocket for when I need some kind of out, easy out. Because he's doing great.

Great.

Yeah. But a lot of people don't understand that when you combine a release with cranial osteopathy and skilled hard tissue and soft tissue manipulation, it gives you the opportunity to set a new baseline for the fascial memory and the nervous system itself. But a lot of people don't. They don't know that. They don't understand that. The practitioners doing the releases don't understand it. You know, unless you've done it. You really don't. Unless you've seen it firsthand. You really don't know.

When everyone says to me, well, what. What does the osteopath do? Or what does the cranial sacral therapist do? Or what does this person do? And I'm like. Because they're like, I've. I've gone or I've been myself. And I'm like, I just know they, like, put their hands on me and I'm not really sure what they're doing. And so I'm like, well, I can't do this justice. Like, I could explain to you very basically, because I've had it done to me. I've taken my children, I've had patients go through it.

I'm like, you just have to go.

And experience it for yourself because you're not going to understand until you experience the health benefits that come from it. Like, and that's not something I can explain to you because we don't really know what's going to change for you that you don't realize is a compensation that you currently have until it's no longer compensation.

Right.

So much better. And you're unwinding and you're like, I'm a new person. It unwinds you. And so my, My PT that I go to, who does the. The manual. The manual Counter stream.

Yeah. Brian Tuckeys. I love that podcast. I send it to people all the time.

I'm like, so you need My guy, Manny Kim is like, works with, like, they. They do stuff together. They're both local. And. And Manny, I'm like, I never had any idea that I had so many compensations until I went to him. I had been to plenty of chiropractors. I had been to plenty of pts. I had been to all kinds of practitioners to help me with all these different things. And I'm not. I'm like, he barely touched me. My first appointment, and I left feeling like I had a full body massage and, like, I was a new person. And I slept so well that night. And, like. And I was already a good sleeper. So, like. But I'm like, It was just. It was life changing. Like, I'm like. And I don't know how to explain that to somebody else without them going and having that type of experience. And I feel like the cranial osteopathy is the exact same thing. Yeah. You know, everyone's like. But they're not really doing anything. I'm like, oh, they are. Oh, they are.

You can't. That's a thing. Like, it's energetic.

It has to do with, like, you know, systems functioning properly and the fluids flowing and everything, you know, but, yeah.

Well, you have to come at it, because connective tissue is. It's supposed to get rigid when there's trauma, when there's force, it protects your body systems. So osteopathy takes the opposite approach, where they unwind it with gentle forces, and it's very gentle. I mean, I've been so. I've been to a few osteopaths, and the neuromuscular ones tend to use, like, bigger limb movements and stuff. But the really skilled ones, they just move around you like a fairy on the table.

Exactly. And that's the. So. And we don't have too many here, obviously, I feel like, in general. But the husband wife team that we do have here very close to me, are phenomenal. And that's exactly what you said. Like, it feels like they're barely touching you. And I think that's also why people are like, well, they didn't do anything. Why am I paying them all this money? I'm like, oh, you don't know? You don't know. They did a lot.

Like, if you're still tied, you're not gonna get far with it. And you may even cause yourself harm trying to unwind without, like, being prepared to do a release. Yeah, yeah.

I love, like, I love them. I love Nanny Kim, the PT. His whole. I think his is, like, called, like, unlockyourbody.com is his website or something. And I'm like, so genius because. And like, that's exactly what you're doing. But he also works from a very holistic standpoint where, like, you can, you can come to me, you can go do this, you can go do that. But if you're not doing the right things for you to truly, you're just going to have to keep coming back.

Right.

You're just, you're not going to sustain it. It's not sustainable. And that's where I feel like, you know, a lot of chiropractors or PTs or, you know, they might be in this space, but I have a hard time sending my families because what I find is, like, if they're not doing the right recipe, Right. For their individual treatment plan and they're not doing all the things they need to be doing so that the treatment actually holds, then they're constantly going back and they're like, why do I have to keep going back? Well, we're missing something here. Something else needs to change. That might be a posterior tongue tie release. That might be growing your jaws. That might be looking at your airway a bit closer. And so that's where it's like, where it could be all the above.

I mean, you might have a gas leak in your house that you don't know about, because anything that deprives you of oxygen is going to have these symptoms. So you just have to keep peeling back the layers. And a lot of these practitioners, they don't look at these kids and say, you know, this person, this human being, is neurologically and structurally underdeveloped. They say, oh, this person is a sum of their systems. I'm gonna treat them that way. But that's not how you treat a whole person. Yeah. Whoever you're working with, like, they have to know that these children are underdeveloped.

Yeah.

They have to know that the adults are under. Were underdeveloped. Your brain is what develops your face. And if your face is underdeveloped when you're born, that's a symptom that your neurology is underdeveloped because all the cranial nerves is what forms your head and neck, which I learned in dental hygiene school. Thanks.

Dental hygiene school. Hey, you know, it was good for something, right?

I know, right?

Thank goodness.

I learned a lot. Didn't know when I would use it, but here I am. Goodness.

So both. So are both of your kids now, like, doing okay?

Where, you know, they're doing amazing so we did the release, and then when his second molars came in, we took impressions for appliance. He's got an. He got an upper, lower bio black appliance this spring, you know, and we're still doing the bodywork and the diet and all these things, and he just keeps making progress, and we're inching him along. As soon as the mandibular appliance went in, his whole cranium unlocked. We dropped from osteopathy once a week or every week. Yeah. To once a month. Awesome. Within a matter of, like, a month and a half, there was a little glitch, like, when it first went in. I don't know if I turned it too much or something, but his. He was, like, all messed up one day, having all sorts of symptoms of regression. And I called every. I called all my practitioners. I was like, I need a team meeting. We gotta, like, figure out what's going on. We have to reassess. I gotta go and meet with the chiropractor and osteopath. And I called the dentist, and I'm calling the ENT and I'm calling the myofunctional therapist.

I need everybody right now.

It was okay. You know, it worked itself out. And since then, he's just, like, golden, you know?

Amazing. And he's going well at three and a half with a bioblock.

Yeah. Upper and lower bioblock in the bottom.

How old was he when you put it in?

He was. He got it. He was like, three in a few months. You know, his birthday's in November, and he got the upper right before COVID hit, like, the week before they shut everything down. We went and got the upper. Yeah. And the lower wouldn't stay in. And my daughter also went into AGA then, so we had to wait a few months before we got the lower end. And then he was, like, taking it out with his tongue. And our dentist was like, just leave it out. And I was like, nope, nope. I'm just gonna keep putting it back in.

Yeah.

And it just stabilized everything. Now he's doing great. We still see the chiropractor twice a week just to keep close tabs on him. But the osteopath has us cancel his weekly appointment the day before. We go once a month now. You know, he's doing really good.

That's awesome.

Yay.

And how about you? Since we know this is all genetic. What about you, Mom?

Oh, well, so the older one, we had to get her. She was in. She was an elf. And then she went into Raga. And then I was like, well, the little one, should I get the big one to sleep study? And the dentist was like, yes. So we did. And sure enough, her AHI is still like 1.7. She had her tonsils and anoids out when she was 4, 5. She's been through like a year or two. She's been through two different growth appliances, and she still has an AHI of 1.7. So the ENT is like, oh, she's got it too. Then like, yeah, okay. We. When we did the surgery and he came out, showed me the same thing. Terrifying. Whole airway completely collapsed. She woke up from her surgery, and we actually ended up having to do the lingual tonsils and the turbinates and her epiglottis.

Wow.

Yeah. And my son's adenoids and tonsils self resolved after we took care of his epiglottis. Amazing. So she woke up from surgery and she's like, I can breathe, mom. This is amazing. You know, she's still all woozy from the stuff, but I was like, yeah.

Kid, that was the point of all this. I'm so glad you recognize it. Makes me feel a little better putting you through all.

Yeah, exactly. I'm sorry you had to have surgery twice and your brother got away with only having it once, right?

My gosh. But that's amazing that, you know, at such a young age. She recognized immediately, like, how well she could breathe.

It was a big deal, you know, she knew. And we had taken the youngest back for another drug induced sleep endoscopy. When we did her surgery, we took both the kids to New York City and they took Boone in first and.

They brought him right out.

They're like, nope, he doesn't have it. He's done. We're bringing him out of sedation. It was just sedation. And he goes, but he's got central sleep apnea because his airway is still collapsing, but when he exhales, not when he inhales. So it was collapsing when he was inhaling and when he was exhaling before he had the surgery originally. So we're still dealing with central sleep apnea from his brain damage. And. But she. So lion was finally breathing great. She was doing really good. She went into aga. The little one went into bio Black Covid hit. I. My TMJ just gave out. I. My kids were finally okay, and my body was just like, nope.

You know what happens as soon as you can take a deep breath because your kids are fine. It's all of a sudden your Body's like, okay, well, now we can send you into fight or flight, because if you've been just holding it on by a string, focus on you. Oh, gosh.

And I knew I had the epiglottis obstruction because it's genetic and it came from somewhere. And I had gotten myself and my significant other a sleep study as well. Our core ENT we got there for some of our first original appointments, and I was like, so here's the insurance card for this person. How about we see them, too? We're going to add this family member and then the next appointment. I was like, okay, can you scope this one while you're doing the one I had the appointment for? It's hard to get into.

Yeah, yeah.

No, everybody got a sleep study. I knew I had it. I had been trying to schedule surgery, but as an adult, it's a lot more difficult to get on the schedule for these surgeries. They're really a lot more concerned about their pediatric cases than they are adults that have made it this far.

Yeah.

So I had planned to do my epiglottis first, and the hospital shut down, so I couldn't do it. And then I was, you know, grinding my teeth really bad still, and I woke up one morning and felt like I had just rocked the whole second molar on my right mandible, like, just completely out of socket. It felt like ham. The gums felt like hamburger. Like, there was. It was bad. And I was like. I'm pretty sure I, like, tore a ligament or ripped my joint capsule or something. And, you know, I just kind of nurse it. And then I felt all this fluid, like, drain down my face and into my mandible.

Oh, gosh.

And the next day, I had periodontal abscess, and I went and saw my general dentist, and he, you know, he scaled it out. He goes, oh, you have a. There's like, a 10 millimeter pocket in here. You're gonna lose that tooth.

Like.

He'S like, well, it's from bacteria. I was like, not. But okay, that's fine. Just thanks for seeing me. Thanks for cleaning my tooth out. I'm going to take the antibiotics because I have an infection in my jaw, so I'll take those, please. You know, I would try to avoid them, but this is serious.

Yeah.

And, you know, he said, you have a 10 millimeter pocket. We're going to. You need bone graft and gum graft, and you're going to. Or we're going to have to pull that tooth. And I was like, well, you can't do any of those things right now. So I'm just gonna take my prescription and go home with my swollen face and let it heal. And as soon as I got home, I started calling cranial osteobands.

Like, I need to get in now.

I had a full periodontal charting, like, a year ago, year and a half ago. I didn't have any pockets. I was like, there's no way. There's no way. I broke 10 millimeters of bone out from under my knees, my tooth from grinding. I had already had my email with the airway eccentric dentist who was like, you need to get your ties released right away immediately. So a year and some odd months later, here I am with a broken jaw, and I'm like, okay, time to do something. So I called up his cranial osteopath. Unfortunately, when Covid shut everything down, all the osteopaths opened up because no one was going to their appointments. But they were still working because they're physicians.

Yeah.

So I booked it to Connecticut and got my eval. And he said, well, your left ankle is completely shot from your birth trauma, and your right TMJ capsule is also completely shot. And he suggested that I do. He wanted me to do prolotherapy injections, which are sugar injections, and they force this immune healing response, like an injury healing response, without having to do the injury. So I said, yep, let's do it. I did four sessions, three or four sessions of prolotherapy. And I had already been doing myofunctional therapy forever with my kids, you know, because we. By then, we'd been in the airway orthodontics for three and a half years. So I worked with our myofunctional therapist. I did a bunch of, like, functional movement training that the osteopath told me to do. And I got released June 1. And it was a deep, tethered oral tissue release, like. And I. I still think I need a little bit more, but I'm going to give my body some time. Feel a couple of strings in the floor of my mouth, and I had an Eiffel Tower tongue tie. So I'm gonna give that a little bit of time. And I feel like I need a little bit more in the posterior of my mandible, but a little bit. Little bit at a time. But I got released. I had one more session of prolotherapy injections. The osteopath guided my release, which was awesome. All my tissues were balanced, like, right before release. And at the time of release and after release. And then I saw him two days later. And then I went back for a set of injections.

Amazing.

And it was like, super stable. I went to see my son's cranial osteopath and she unlocked my whole face. It was pretty crazy. It was only a half hour appointment, and she's. She was like, you might be a little sore tomorrow. I was like, okay, no problem. Oh, my God. Like, my whole. This whole side of my face unlocked. My cervical spine unlocked. I was dying. It was more pain than the frenectomy. Like, really unwound my shoulder, my cervical spine, my cranium, like, like gears clicking into place over like 3 days period. And my TMJ has not moved even an inch since then. The bone that broke underneath my tooth has completely healed. I went for. I went to have it scaled just to check, and they're like, no, there's no pocket here. Nope. Not underneath the tooth, not anywhere. It's 3 millimeters. 3 millimeters, maybe 5 millimeters at the distal corner. Like, nope, totally fine. No pocket.

It's amazing how the body can heal itself when it gets the right interventions.

Yeah, it is. I didn't necessarily know that. I just trusted my instincts and went with it. Then the third week after my release, I slept on my back and I woke up in the morning and I felt like I got hit by a truck. And all of my strains were back tenfold. And I called my chiropractor up and we went. She was like, what did you do to yourself? This is terrible. I've never seen it so bad. I was like, oh. Suffocated on my epiglottis all night long.

Oh, gosh.

But the hospital had just started to reopen, and I called the scheduling, the surgery clerk, like, every two days, and she got me on the schedule right away. And I went in August 20th. So it was released June 1st and August 20th. I went in and had my epiglottis reduced 80%.

Wow, that's incredible. So that was just like a matter of weeks ago.

Yeah, I just had it done and I feel so much better. And my release, like, my release was amazing. And it really. It calmed my nervous system, you know, because it was combined with the osteopathy and just the regular care. But it never would have held if I hadn't taken care of my other airway obstruction.

Right, right. Well, and that's the whole idea of, like, everything works together. When we can't treat anything in the silo, we can't just do One and expect that. And that's where, you know, I feel like tongue tie frenectomies for neoplasties, all the above get such a bad rap in the medical community because sure, if you send a baby or an adult or a child for a frenectomy by itself, they're not prepped properly, they're not getting the proper post op care. We're not holistically looking at how are they breathing, how do they chew, how do they swallow? Like, what's going, you know, do they have tension anywhere throughout the body? Not just in their face, not just in their neck. Like, that's where even people within the myofunctional therapy community aren't always.

They don't know.

Looking at it from a holistic perspective and understanding the importance of all the practitioners and the team as a whole, you know, that's where I think what you're really sharing is like, look at all the progress that can be made when you have the right team for your needs. And the importance of all of these practitioners working together, obviously, and understanding what the other one does. Extremely important too.

So well, in a perfect world, all of these practitioners would like, get together and talk about you, but that's not how this works. Like we do that.

We do that in my area, but at least my team does. But I know that's not that common and that's what I'm trying to change. I'm trying to change that.

Well, it's not like they won't, but the people we're working with, oh man, they're so busy, they don't have time to do those things, you know, and I'm a confident person.

Like, yeah, I can figure it out.

I like to lead the care team. I want to say when, when what is done, how we're gonna do it, you know, when we do. When I do a release in my family, I have all the bodywork lined up months before we do the release. Like, yeah, the post op. And we're. I'm already planning with the myofunctional therapist, we're already doing all of these things before I call the dentist and say, hey, I need this done.

Yeah. Well, I think realistically too, for a lot of families, I think just the, like you've talked about it, the cost of all of these services because many are out of pocket, many are not covered by insurance and, or maybe your insurance does cover it, but not with the practitioner that you want to go to because, you know, this is not truly that airway centric Practitioner that is actually going to treat from the perspective that the rest of the team is looking at. And so I really need this person over here. And the insurance is going, no, no, no. Like you've got this person in network close by and you're going, no, no, no, I don't want.

No. So I've been able to. We have Medicaid. They don't cover anything. I've been able to get reimbursed for all of my son's cranial osteopathy with an out of network provider. Fantastic. And I got approved for full reimbursement for his oral growth appliance to treat central sleep apnea.

Yeah, well. And we've learned. So I think I know the provider that you're going to, and from speaking with him, we've learned that, or at least I learned. I didn't know this, but that growth appliances are actually an approved treatment method for sleep apnea and even children. Right. So arguably we should be able to get general health insurance, not dental insurance, but your medical, Your medical insurance, your medical. Listen to me. Your health, your medical insurance to cover a growth appliance.

Well, sleep apnea is a medical problem. Right. Rethrognathia is a medical problem. If you go and you say, oh, they're tongue tied, they're gonna be like, whatever, or teeth are crowded or something like that. But if you go and say, my child has retrognathic jaws, medical condition.

Right.

That's the difference. You have to use the right terminology.

Well, I think you really helped pave the way in fighting for this. And especially, as you mentioned, you're on Medicaid. And so I think a lot of our families who are on Medicaid who feel like, well, I can't afford any of this.

No, you're. Especially because they can't look at you if you're on, you know, if you have lower income and you're on Medicaid, they say you're legally not responsible for any medical payments that you people bill you for. They can't by law. So if you pay it, they have to reimburse you. Yeah, they have to. And with sleep apnea, especially with children, they're like, take out the tonsils and androids, you know, and then do another sleep study. And then you have to do whatever suits the child best after that's done. And if they don't need their tonsils and adenoids out, they still have to treat the sleep apnea. Just because that's the first line of defense. If that's not what that individual needs. They still have to treat them. Can't put my 3 year old in a CPAP and I'm not going to because it's going to stun his jaw growth. That's a big problem.

Right. We know it's going to change the shape of his face and it's just going to further impact the shape of his airway. I mean, there is obviously a time and a place for cpap. I'm not a respiratory therapist or an airway, you know, or a sleep doctor by any means. I won't pretend to be. But we do know that what we see in adults is that it change, it flattens your face, it pushes the jaw backwards. Like that's the opposite of what we're trying to accomplish here.

So it can be done. And you know what? Practitioners who care, practitioners who really understand what's happening with these kids, they're gonna find a way to make it feasible for you to get what your kid needs. If you're willing to do the work. Right. You have to be willing to do the work. You can't hem and haw and say, oh, do I really need this? Do I really need that? No, they said you need it, you need it. If you're willing to find a way, they're gonna help you find a way because they want you to be successful. That's why they do this work. Yeah. They want to help you and your family. Yeah. So, I mean, make deals, barter, do, do whatever you have to do to get your kids the help they need. Don't take no for an answer.

Yeah, yeah, we are private pay, but we give all of our families the information they need to call their insurance and basically say, hey, we're laying this, this and this out for you. Like give us reimbursement. Basically at the highest in network level. What we're asking for, we're telling them you get that gap exception or whatever your insurance calls it, because here are our credentials, here's what we do, here's what your people do not do that are in network. And most of our families, most of them, at least the ones that try and want the reimbursement, they're able to get pretty darn good reimbursement, more than we would get paid if we were in network providers. So it's incredible. But yes, you're absolutely right. The practitioners, and not a lot of practitioners even know that they can do that for their patients or that they. So we're trying to, through what I'm doing, I'm Trying to educate practitioners on, hey, like this is what you can have your patients do. This is how you lead them to getting these services covered. This is, you know, even if you don't take insurance, you can still help give them the information. And then like you said, you have to be willing to, you know, call your insurance. You have to be willing to actually do the work that's being recommended. And you know, it's a lot of work, it's a full time job. It's not easy by any stretch of the imagination, but you can do it even like later.

My son's osteopathy.

You.

I didn't start, I didn't start submitting that until more than a year after we started treatment. I didn't think I could. And then I started reading my manual and doing things and he had to have it. Yeah, had to have it. So I asked our in network airway centric ENT if he could help me out.

Yeah, and did you have the sleep study up front though, or did you do that later?

Yeah, no, we had a sleep study. We had already done the sleep study. We'd already done swallow study, laryngeal Malaysia surgery, tongue tie release. We had already done all of those things. He was still having a terrible problem and he gets this like frontal bossing when the fluid in his cranium isn't moving. It's intracranial hypertension. It's dangerous and our ENT knows that. And I just said I need a letter of medical necessity and this is why I need it. This is how it relates to what you do, our treatment course, and how it's going to benefit him and make sure what we're doing is going to work. He needs this. I need it to be paid for. It's a covered service, it's medically necessary and it was enough to convince him to write me the letter.

Yeah, but what you're asking for is also legitimate, right? You're not asking him to write this bogus letter just to get something covered that you think he needs, that he doesn't actually need. Right. You're asking for, like you said, it's an actual dangerous situation, medically necessary and. But you're asking a practitioner who maybe would not have made the connection or maybe this one would have, but other ones would not. So sometimes parents are up against.

You need to know your practitioners. You need to like, if you're gonna go and ask them for these things, you have to supply a reason of value to them. I asked my pediatrician like 10 times. She laughed at me.

She was like, what?

I'm a doctor of osteopathy. And I was like, you may be a do. She's like, it's massage. I was like, well, I don't think so. I'm not going to ask you anymore.

Never mind. Find somebody else.

Yeah, yeah. I'll see you when we have an ear infection, right? Exactly.

Oh, goodness, no. But I think that that's really helpful because I think a lot of parents need the encouragement that it's worth fighting for. And I always tell my parents, I'm like, be the squeaky wheel. It is the insurance company's job to deny you and to deny you again and for you to appeal. And then typically, third time's a charm. Like you. If you go that far, it's a major pain in the butt. But like 99% of the time they cover it. So even if you're not on Medicaid and you don't have the same requirements.

That you should, I mean, yeah, this is a medical problem. We have to make insurance pay for these things or none of these children or people are going to get what they need. Yeah, no one's looking. They're not gonna pay for it unless we start demanding that it gets paid for. Parents have to start putting in the effort and getting medical insurance to cover these things. It's a serious problem. I mean, half of the children in the United States have chronic disease as children. Yeah. How are they gonna grow up into functioning adults or.

They're not? They're not. That's the bottom line.

Yeah. And he's gotta take care of them. Like, I had no problem doing all the things all at once right away because I knew that I couldn't afford to wait to do anything. There was no way that I could afford to take care of a completely disabled child and give him the things that he needed. Why, when I could give him a life of being able to self sustain and be independent, why would I choose to wait? I can't. I can't afford that. I want him to have the best quality of life possible. Want both of my children.

I think all parents do. Right. But not as many parents have access to the information that you had or that or knew where to ask or who to speak to or what kind of practitioners might be, you know, necessary. So I think this is a really helpful message because I think it's one. I think it's going to be very empowering to other parents that like, yes, you can get insurance to pay for it. Be the squeaky Wheel, like, hey, no, it's not just a tie. Like, there's way more going on here. So yes, you've heard about it in the tongue tie groups, but maybe their tongue ties didn't resolve because it wasn't the main issue. There's a lot more that needs to be unwound.

Just cutting kids, tongues, like, don't cut the midline without preparing the body. That's the center. Your nervous system depends on that. Yeah, Please just stop cutting kids without any preparation. Dentists, providers, please stop cutting kids without any preparation because you're not going to have success stories. Right, right.

One of our local pediatric dentists has a sign off form. And so that child she recommends, she basically says, I need you to see this practitioner and this practitioner and this practitioner. And then she calls, like she'll call on her drive home to talk about the case with the other practitioners to find out, well, did you assess them yet? Have they even called you? Like, what's going on here? And basically present the case to you and then ask, you know, then she'll follow up. Like, we follow up. We have. And it's literally two minutes. It can be two minutes, it can be five minutes, can be 15 minutes. But two minutes of I saw them. This is what I saw, you know. Yeah, this is where they are. Yes, they're ready. No, they're not. And I have to sign off on that form before the release. And so they can't even schedule the appointment until that form has been signed off on. And that's where I'm like, this is the kind of system we need to have in place so that parents realize what's necessary. Because it needs to come from the practitioners, not, you know, like you said, if you're just releasing, he won't release. Basically dealing false hope to parents.

Right, exactly. Well, you're doing, I mean, you're, honestly, you're doing harm because if you cut a nervous system that's in dysfunction, the same way you can relax the nervous system by changing the cellular memory. If the body work is done and the body is prepared and followed up with the functional things, if you cut a nervous system in dysfunction, it's going to be an even more dysfunction.

Right.

It's just gonna get tighter. You can't just cut it. Yeah, yeah, you're doing harm.

And that's why, you know, I feel like some babies reattach very quickly even though the parent did stretches or, you know, it's. Well, the body wasn't given a chance to operate differently to support the release Tongue. So we're basically just cutting tissue to then send the body back into the format it was in prior to the release. This is not helpful. So, you know, and I think that that's where hopefully this is like lighting up some light bulbs for some parents who might be listening. Because I see this all too often. And it's not necessarily the release that was bad. It's that the body wasn't prepared and that release provider is not making sure that this child is getting the necessary pre and post op support needed.

And everyone is human. Like, we all make mistakes and parents have to be accountable for knowing what they're doing. Like, you should never go to a release provider and be like, I don't know what ties my kid has. You need to know there's seven fronta in the mouth, lip, lower lip, buckles, tongue. There's seven. There's at least seven. You need to check every single one of them for blanching. You should know before you walk into that provider's office, you should tell the provider what you know. They should talk to you about what they see when they do the exam and then you guys decide what ties are going to be released. Yeah, like, parents have to be as accountable as these providers do. This is, it's all new territory. Like it's the wild west. Everyone is just trying to do the best they can to help people and parents need to be as accountable as providers.

Yeah.

Yeah.

So I mean, it's definitely my. And that just gave me a great idea because I have done like, when I've done these free trainings for practitioners on how to like use our feeding screener, which looks at tots as well, looks at telodoral tissues from a very brief screening standpoint, even just see if something is present that we're concerned about and if further assessment is warranted. I did back in June, I did.

Like a. I was like, you know.

There'S a ton of questions about tongue tie and like, let's just talk about like, let's just do a one hour quick training on tots in this group. It's in one of my professional groups. And we did it and it was. I was amazed to see how many people didn't know there were seven. Freedom. They had no idea that there was seven. Frena. And they were like, wait, what? There's not just the upper and the tongue.

Right?

Like you can have one of the lower lip too. I'm like, yeah.

And for lower lip, one is one of the most important. Your mandible is not going to come forward if it's still connected into your sternum with your lower lip tie.

And literally nobody here is releasing that, they think outside of maybe one practitioner that looks at that. And, you know, and I. And it's an oral surgeon. So I'm like, I think maybe that's part of it too. But at the same time, I'm like, we've come so far. Yeah, we have so far to go.

Are they just looking at frenum? Because we're looking for restrictive tissues.

I probably should record a podcast episode just talking about those seven attachments.

Well, my son didn't even have. There was no frenulum in his lower lip, but there was like an inch wide white spot on the pictures I got from the original dentist, you know, because I emailed him and just said, can you send me the picture so I can look at him? There's a huge white spot in his lower lip. Yeah, huge. Like this whole mandible is completely restricted by that lower lip. Synchronous. Yeah.

Well, and that's where we need to be retracting everything. Right. And looking to see where is the tight. Where is our tight tissue appearing? Right. It's not always a visible frenum. It's not always. And that's where that whole posterior conversation comes in. And people say there's no such thing as an anterior tie because every anterior tie has a posterior component. I'm like, I don't care what you call it as long as you call it a tie. And you know that there's restriction and that we need to do something about it. Whether that, you know, whatever that treatment plan looks like, fine. But I'm like, I don't care what you call it, as long as you're looking for it. And you understand that it's deeper than what we can see at the surface. Well.

And they don't realize that it's like restricted embryologic tissue. Like your body developed inside of this tissue. It's not like it was just like made tight. Like, yeah, there's trauma. Trauma makes it tight. Dysfunction makes it tight. You want to peel back those layers, get to the embryologic restrictions, and then release the band.

Yeah, well, that's what I was just actually talking about in my last podcast I recorded. It was just me. And I was like, we need to jump back into mayo. I did a little business series and I actually talked about how there's a failure of apoptosis. And this is when everything should recede back. Right? It grows outward, forward, and then it should recede Back. And that tends to happen up towards the head, up to the cranium, and then back down towards the toes. And so that's typically why, if you have, like, an upper lip tie, you probably also have a tongue tie and maybe a lower one as well. And, you know, it's just because of how apoptosis happens, the direction it happens. And it's not always the case. Right. But quite often that is the case. But if the apoptosis fails to happen in utero, we start swallowing by 12 weeks of age. In utero, and your patterns are already set by the end of your first trimester. And that's when I started talking about this on the episode. And I'm like, I know people are gonna be like, wait, what? Like, this is. I teach this in my feed the Beats course, too. When I talk about when I do the TOTs module, because nobody realizes. Everyone talks about, oh, well, you know, it's like, happens in utero. I'm like, I don't think anybody understands how early it is. It is literally there, like, since conception. Okay. It's basically there since you are conceived.

It's the whole craniofacial complex. Like, I had turbinate reduction when I was in my 20s, and it was awful. They rotorated my face. My turbinates are, like, beautiful now. I still couldn't breathe through my nose until I had my buckles released. Yeah, where your face fuses, where the pharyngeal arches develop, your throat, you know, your larynx, your epiglottis, your mandible, your tongue, where your eyes and your nose fuse. Like, this is where all of these connections begin. It happens so early. And when I had my airway eval, the dentist was like, you know, open and swallow with your mouth open. And I literally choked. Like, I had to bend over because I couldn't breathe. He was like, oh, my God. I don't know how you live this long. Pretty much I'm like my dad's golden retriever, wolfing down my food my whole life just to get food into my system. And then I'm like, oh, my God, I'm hyperventilating. My whole life, I've been hyperventilating.

Yeah. Isn't that crazy?

It is crazy.

Yeah. People don't realize that they're living this way. They.

No, I don't.

And, yeah, I can't tell you how many adults I've treated, too, that basically have very low quality of life that are just absolutely.

They're depressed.

They are. You know, they don't know how to get out of what they're living in. But they also are completely lacking oxygen, not sleeping well because they can't. And it doesn't matter what you do for them. Like, it's just a band aid. It doesn't fix anything. It doesn't improve their quality of life. And they've been to so many specialists and just so many practitioners, but by the time they get to me, and these are grown men, they are in tears when they finally speak to me. And I'm like, we can help you. And you know, here's what we can do for you. And no, this is not normal. And here's what, you know, here's what's on the other side of this. Right. And here's what is possible. And to see people actually have hope again. I mean, I don't think people realize that all the work that you're doing right now is preventing this, this poor quality of life for children down the road. It's not just whether they can function or not in society, but this is.

Whether they can survive.

Yeah. I mean, I think that there needs to be, there needs to be some studies done on this because I think there's a high connection between what is done in childhood versus you know, the rate of depression and quality of life. And adults in their 20s and 30s. Like, I'm not talking like.

Well, and there's guys that I went to school with now that are, you know, they're in their 30s and they're dying of heart attacks.

Yeah, yeah.

Their wife alone with their kids and they have no support and they have been snoring forever and, you know, died between like 2 and 5 o' clock in the morning. Yeah.

And nobody ever, because nobody thinks snoring is abnormal. Everybody does it. So it must be normal right now. It might be common. It's far from normal.

I mean, every, every psychological disorder in the DSM V5 has a sleep disorder component to it.

Yeah.

And all of us, 90% of us, have underdeveloped jaws. I've seen a child, they had a naturally forward face and I was just floored. I. They're her poor parents. Like, I asked them so many questions. I was like, what happened in her birth? Did she have any problems feeding? Did you breastfeed for a really long time? Your face is huge.

That's amazing. I know, but it's like when you see this, you're like, oh, my gosh. It is possible.

It is possible. I mean, I've seen kids that have been developed, like our osteopath her four kids have all been through orthodontics. And their faces are beautiful and they are like the calmest human beings you have ever been around. You can just feel how calm their energy is when you're in the same room with them. And my niece is three and a half and she had all the things really early and her face is beautiful. She still has sleep apnea and had to have her tonsils and adenoids removed because her epiglottis is obstructing her airway. So it's never just a tie and it's never just long term breastfeeding. Like, it's never just. You can't just do something for a little while. You have to watch these kids their whole development. Yes.

Yeah, well. And so many things can lead to a change, right? I mean, it could be as far as moving to a new state that has horrible seasonal allergies and all of a sudden you can't breathe. And so now, like, other things start to happen as a result. And, you know, if you're already at risk for some of these airway issues, it's just going to exacerbate it much further. Whereas maybe it was moving at a much slower pace where you were living before. And so, you know, sometimes parents move to the D.C. area where I am, and allergies are horrendous here and they're like, we never had allergies a day in our life and all of a sudden my kids can't breathe and there's this going on and there's these symptoms and like, it's just. It's just a testament to how hard it can be to breathe with a slightest change in environment, like an environmental change.

Right.

But obviously, these kids obviously had some other things probably going for that to have that big of an impact on them. But it's just. It's just interesting the kind of conversations we have with people who move here from out of state. And all of a sudden they land in our office, like, my office. And I'm like, yeah, yeah.

I mean, whatever pushes you over the edge, go do it. Right?

Yeah.

My oldest allergies went away completely within six months of getting Alfred. They haven't returned.

That's been Lily. So she is sneezing. Interesting. She just had her alf out last week and she's been sneezing a lot. And it's like fall here. And I'm going, huh? You just said that.

I'm like, I need to keep a notebook.

I need to talk to my dentist, I need to text her when we finish, when we finish chatting and be like, so it'll be interesting to see. I mean, she's home right now, right? She's not in school. I was just talking to my husband about this, how it'll be so interesting to see what happens this winter because she's not around the germs, right? And when she went into her alf, she did not have really any colds or any of those types of symptoms while she was in it last. Last winter, which was the first time ever because she was the kid who was prone to that, with a massively enlarged, infected looking tonsils that the ENT didn't want to touch. And I was like, I'm not asking you to do surgery. Like, I don't want to put my child through that if I can avoid it. But they're almost kissing and I'm a little concerned about that. And so now they've, they've gone. They're still there. They're more of like a size 2, but they're not inflamed. They look pretty calm. And so, you know, definitely, you know, we'll have to watch them now. The ALF is out this winter, but it's so annoying.

Well, if you do have to do something about it, make sure you do see somebody that's gonna do a dice because if they don't do a dice, you'd end up like me. Have to take your more of your kids and Addy removed later on because nobody checked the rest of the airway. Yeah, fun times. I know, I know. My sister, my sister is a family nurse practitioner now. She's been an IVCLC and RN for like 10 years. She asked the ENT that took her kids in to remove them if she would check their epiglottis. And she goes, oh, I don't, I don't have the tools to do that in the or.

Well, where, where do you have the tools to do that? I mean, it's just the scope.

Are you even an ent? Like, interesting. They just, they don't know. And we have to, we have parent. It has to be parents, like physicians, practitioners, they don't have time to go around knocking on doors being like, hey, did you know this? Hey, this is a real problem. Like, parents need to start calling their school districts and saying, why aren't you suggesting a sleep disorder evaluation when you're referring children for behavioral evaluations. Like, if you can suggest that they need to be checked for a behavioral disorder, you can suggest, suggest that there might be a sleep issue that doesn't have to do with their home life and has to do with their anatomy 100%.

And that gets into.

We won't go there.

But that gets into the whole like ADHD thing because I ended up getting a diagnosis. Well, they wouldn't diagnose me at 19 because I was 19. I was successful through all of my schooling and then I go to college and I basically have a horrible first semester in college. And I was also like, I'm partying and like not studying. Like I'm studying three hours before my, my exam. But I would go back and look at a test and I'd be like, I know 13 of the 15 I got wrong. Like, I barely said, like, what gives? Like, that's not. I couldn't focus and I was having like anxiety over the test settings because I couldn't focus. And I did fine in high school. And I was like, I just chopped.

It up to like.

Well, college is a totally different testing environment and situ and set up than high school. And anyways they tested me and they're like, well, your IQ is too high for you to like. And you're like now 19. And so for. We're not going to label you as having addicted, but you are a candidate for Ritalin. I was like, okay, fine, just give me the drugs. So I took them, hated myself on them. My grades shot up to like a B average the next semester. And then I was straight A student from there all the way through the undergrad school. But I pulled myself off those meds because I hated them. They did help me focus, but.

I know, but they wear you out and they make your jaw tired.

Well, now I know that I obviously was not sleeping well. I had a sleep disorder breathing. I had orthodontic relapse. I had wires behind my upper and lower teeth so my jaws hadn't shifted because I had the permanent retainers in the lingual bar which cause all the kind of like build up. Those are fun. I mean, so it's like nobody was looking at this because I had beautiful teeth, because it was being held in place. Doesn't matter that my tongue wasn't resting in the proper place. Doesn't matter that I wasn't sleeping well. Doesn't matter I wasn't breathing well. Oh, I also got. I also developed a allergy to peanuts randomly at around the same time. I'm like, do we not think this is some kind of a stress response on the body? Like, where does a random allergy out of nowhere where I've eaten this my Entire life show up. And, oh, by the way, once I was off the medications and started dealing with some of this stuff, like, six years later, the allergy went away because.

Your nervous system wasn't so overwhelmed. Your nervous system and your immune system are kind of the same thing.

Yeah. I mean, I was obviously also not eating well because. Because I was in college and I was eating, like, cafeteria foods and, you know, study, like Diet Coke, eating peanut butter and ice cream like it was college. Whatever. But, yeah, I mean, it's just so interesting when you look at everything holistically to, like, see, like, well, if only somebody had said, hey, maybe we should do a sleep study.

Right?

Well, what about take Ritalin for so long, maybe I would have had, you know, Anyways.

Yeah, well, all these babies, like, these babies with torticollis, and no one's. No one's checking them for sleeping disorders. Like, if your head is misshapen, it's because your tongue didn't go to the roof of your mouth when you were born, because that's what realigns your cranial bones and moves the cranial fluid and breathing, relaxes the connective tissue so that it can do those things. Yeah, but they're not. No one looks at that. They're like, you know, stretch it or keep them on their tummy. Tummy time. Do tummy time. Listen, tummy time doesn't fix things. Like, yes, it's an asset, but not if it's done in a compensatory way and it doesn't solve cranial nerve dysfunction. You have to go to a body worker, and if you put a helmet on a baby who can't breathe, they're going to be able to breathe even less because your head can't expand when it's restricted that way.

That's very true.

Yeah. And those kids have pain. Like, it's painful.

They want to know why they're unhappy. So much of the time, they are telling you something. They're communicating something to you. It's not just that their bellies are uncomfortable or that they, you know, there's.

More going on here, chronic pain and inflammation all the time, just like us. We don't know how dysfunctional we are until it breaks and there's no more. Well, these little kids, yeah, they act like they're happy sometimes than the rest of it, but they're not sleeping, they're not feeding well. You know, there's a lot of kids. There are studies that are showing that these kids with torticollis or plagiocephaly are having neurodevelopmental delays later on. That's the current research. It's not from back sleeping, folks. That's not a thing, right?

No. If you're not sleeping, there's a reason for that, Right?

Exactly.

Whether you're 2 months old or 20 years old or 6 years old, reason for why you are not sleeping. And that's where I'm like, I hate to go here, but that's where these sleep consultants for infants drive me up a wall. Because I am like, you are not just. And look, I do know a couple who actually have gotten into this space. Okay, don't. Looking at it from a different perspective.

Don't put this in the interview. I had a dentist, there's some dentists around me that are starting to get into this stuff and they don't work with osteopaths. And like, okay, but one of them was like, you should be one of these sleep parent, sleep guide thing, mentor things. And I was like, no, I don't want to do that. I don't do compensations.

Yeah, no. But to me, it's actually dangerous because you are trying to force a baby to. And I won't put any of this actually in there because I'm like, well, piss off a lot of people, which I don't normally care about, but. But I'm like, you're literally probably forcing a child to have worse sleep apnea by forcing them to try and stay awake in every which way possible when their body is saying, danger, danger, I must wake up.

So nature doesn't need you to train it.

Like it doesn't need to be trained.

You have to remove the compensations. Yeah. Baby. And then habilitate. Yes. Like, it's not. We're not dog training. People don't need dog trained. I mean, maybe adults need some dog training, but kids don't need dog training.

So true. No, but it's, you know, that's one of the biggest things that I teach is airway. Like, even if you're not the airway specialist, you need to understand that you need to be looking at it and you need to be asking about it. So you can refer out to the right person. If you're not that person. When somebody comes to you for a feeding totem, speech, you know, language, OT eval, I don't care what you're assessing. If you're not asking about sleep, you're doing it wrong.

Right.

Like, if you're not asking about sleep. And here's the thing, I also teach that parents Sometimes think their kid sleeps great because their child doesn't wake them up. That doesn't mean anything. Yeah, they don't. I've had kids. I had a child who had the worst case of obstructive sleep apnea the ENT had ever seen. This child supposedly slept through the night, but when they assessed this child, the child went for an emergency tonsil, tonsil and adenoidectomy. Because it was like, we can't let this child continue to possibly herself and suffocate in her sleep anymore. So, like, that was an emergency removal of those tissues. If I'm just. It drives me up a wall. That, like, this is not taught. Nobody's not. Nobody's looking at it, but a lot of practitioners are not looking at it. I think I'm lucky in my space that people are hearing me loud and clear and. Or hearing other people that are in the myo space that are saying, airway, airway, airway. Like, you need to be learning about it. Even if you don't treat it, you still need to know how to at least screen for it, minorly assess it, and refer out for it before you do anything else. Like, that is step one.

I mean, if a mom says, my kid doesn't sleep, don't turn around and say, well, you need to put them to bed earlier.

Like, don't give them so much to drink before bed. Give them sugar earlier in the day. You know, it's like, I don't. That's not helpful.

You know, give them a bath and rub them down with lavender and read them 10 books and rock them, and then they'll fall asleep and sleep all night long. No. Why wouldn't you want to sleep? My dog loves to sleep. He's chilling.

You know, my dog, too. I always joke. I'm like, I want to be him in my next one.

Right, Me too. Can we just sleep, please? I'm so tired. I'm not as tired as I was, but I'm also not done. Like, I know that I need expansion. I know that my airway is still not competent, but I think I'm gonna go. I have a bunch of facial asymmetry from my birth trauma. So my sister and I. My identical twin sister, who's a family nurse practitioner and a labor and delivery nurse and an ivclc, and here I am. I'm a college dropout who did terrible in school and. But I'm no less intelligent or capable than my sister. I just have more birth trauma than she does. Her face is symmetrical. She doesn't have the cranial strains that I have. And you know, it could be from in utero, it could be from the C section, you know, who knows? Exactly.

Back to that age old question. Two kids come out of the same household, two twins, in your case, the same household, same opportunities, same background, you know, but what, like, what's the difference? Right?

Well, birth trauma.

Birth trauma. You know, she has the epiglottic obstruction too.

We're genetically identical. We've had genetic testing done. We're exactly the same human being when it comes down to genetics. Yeah. So the difference is trauma.

Yeah. And that's why people ask me, they'll say, well, why do you ask your adults about like their birth experience and their breastfeeding experience? I'm like, well, I want them, if they're able to, to go back and ask questions about this. I want to get as much information, even though it might not be the most accurate, complete information. Sometimes they'll come back and be like, well, my mom always joked that, like, I was in horrible feet like that. I like, for me, I'm like, well, I couldn't breastfeed. My mom couldn't get me to keep down any milk based products. I refused to drink the ones that stunk like stinky socks because back in the 80s it was like soy milk was like horribly stinky. So I was a pain in the butt to feed. Oh, gee, I wonder why. Now that I know what I know, that's actually very helpful information.

Right. My dad is like my dad. Our nickname was Beaners. We're the Beaners because we were always falling down when we were kids. Always falling down. Oh, guess what? Well, my occipitals are totally locked up. My temporals were moving in two different directions. Like, no wonder I don't have any coordination. My cranial bones are out of alignment.

Yeah, yeah. My mandible turns in on the left side. And so you can see that my teeth don't align down the center, my upper and lower central incisors. And so that's one thing that we've been working on actually with my DNA appliance and with my body work is we've been trying to, you know, get that the mandible moving. And it's been throughout certain points of my DNA appliance where I feel things lock back up or he's like, oh, things are really moving today. I can feel, you know. Do you feel that? I can actually feel the pulse. Not everybody can feel it, but I'm like, oh, no, I feel that. Like I can Feel. And so. But that affects the entire rest of the cranium. Like, everything shifts when that is. He's like, this is moving better. And so now all of. He's like, I've never felt so mobile before. Everything's just fluid and moving. And I'm like, oh, this is so good.

It's like, amazing to feel your own body. It's like I never felt myself before, but this is crazy. I can feel the fluid in my spine and cranium moving. So I think I'm going to go with ALF for a while, try and fix my facial asymmetry before I go into aga. And then control arch braces. Slow and steady.

Slow and steady. Yeah. I did two years in the DNA appliance, and then I definitely have enough room for my tongue up there now. And so now we're actually thinking about, like, going into Invisalign. She thinks that that, for me, might help to continue the mandibular work that I need done. And actually, he was in agreement with that. So I'm like, whatever. I'm like, whatever you guys think is going to. Gonna work best for, like, my current situation. Like, that's where we're going. So that's our. That's step two. We're gonna try that and see if that helps to kind of get everything into alignment and hold it there.

But yeah.

Yeah, we'll see.

Like, I'm not going. I'm not gonna go to our. The dentist that we use for the kids, for the alf, because that's not his favorite thing to do on adults. And I want to use all my team players for, you know, what they're best at.

Absolutely.

Because that's what they're going to be passionate about. Yeah.

Yeah. Lily just had her ALF taken out, as I mentioned. My husband's probably going to be going into one with the dental team that I work with. Actually uses a variety of appliances, which is really nice. And they. They feel that, like, different appliances are best for different.

Right.

You know, candidates. Which is also why I love them, because they're not like, a one appliance. Stop. You know, or it's like, nope, sorry, we only do that. And, like, if you do that, that's fine. But, like, I love that, like, my patients can go there and they have. They know that they're going to be recommended what's best for their situation. Yeah.

I mean, my kids get whatever appliance they need because ours uses a huge range of appliances. So whatever appliance suits my kids needs, that's what they get, like, we pay for treatment. They get whatever appliance they need to get the growth they need for where they are at that time. Never have to worry about it.

Awesome.

And he's super passionate about aga, so when I'm ready to do that, I'll go to him. My sister, my twin sister just finished aga, and she's in control arch braces. Oh, my God, her face is beautiful. I'm so jealous.

You'll get there.

You'll get there ahead of me. They all got released and, like, did things before I did. And my young or my oldest, the girl, she. She still needs to be released, and we're gonna do that at the end of treatment.

You know, I have to say, for Lily, I think we naturally need to go do a second release now, because she was released at 2 and then went into her appliance around 4. And now that she's got a different shape, you know, mouth, like her tongue, the posterior portion of her tongue, I don't think it elevates to actually reach where her. The shape of her mandible now. And so, sorry, her maxilla. So I feel like we need to do that second release so that she can actually now make contacts. I think the posterior portion is. Maybe it is making contact, but she's. I don't know. Whatever it is, it's definitely too restrictive for the current mouth she now has, which is very different than it was when she was two years old. One, because of growth and two, because of their appliance work so well.

And I feel like these people that are like, oh, release your baby right now. Breastfeed him, you'll be able to avoid braces. No, that's not true. And one release isn't going to do it. One release doesn't do it for anyone.

Yeah, I think I need another release too, actually, now that I've had the work done. Because when I do this, I can feel a little bit of my, you know, the floor of my tongue pull up a teeny bit.

I'm good here, though.

Yeah. No, you've got good range. Anybody who's watching this on YouTube will be able to see. For those who are not watching, we're comparing how we can suction our tongue to our palate and do a ton.

I mean, I'm good.

The floor doesn't lift up at all. I have pretty good, good range. Yeah. You can see, like, I have some, like, reattachment at the bottom. Yeah.

Oh, yeah, A little bit.

I can feel it.

Like, it's tight. Like in the floor of your tongue, there's some.

The floor. Because if I put my finger down there.

Oh, yeah.

Look how wide it back down. It's like, boom. Oh, man.

Well, I still. So my left buckle, this left lower buckle didn't get released all the way. It's like, I don't know. But yeah, right here. It's still too tight. There's no frenulin there. But it's like the whole band.

Yeah.

And they'll do it. You know, I'm just. I love my practitioners because I go to them and they're like, look, we don't always get it all the first time. And I'm like, no, no, this is a work in progress. We're gonna use that release to change the trajectory I'm getting right.

And then you know what? Sometimes you need to. You need. Like you said, you need to further release or a second one, because not that the first one was. It was incorrect, complete. But now things have shifted and changed and now we might need to adapt to meet the new, you know, structure. So this has been amazing, but it's.

Like, this is an opportunity to change the course of what's happening that you wouldn't get otherwise. Like, embrace it.

Absolutely.

You can change your whole life if you do it. Use the right tools to do it. Embrace it. It's not scary. It's powerful. Embrace that power.

Absolutely. Well, thank you so much for sharing your story of your kiddos and you and for your passion and, you know, I think it just, It'll really help, like the first half. I know we really spent on, like, your story, which I think is going to be so, so helpful for a lot of parents to hear, because I think so many, even practitioners who have these kiddos. I've. I've actually had therapists go through like my feeding course and then they're like, oh, my. Oh, my gosh, Holly. Like, I just diagnosed my entire. And this is like towards birth to three and their kids are older and they're like, I just diagnosed my entire family. Like, I now know how to help my 25 year old who's really struggling. Like, you know, thank you. Because, like, I had no clue. Like, nobody's ever told me this is what was going on. And it was. All they needed was a little bit of a history of what. What are tethered old tissues? What can we do down the line if we don't address them early on? And oh, hey, by the way, from a MYO standpoint, like, what else is going on on top of all of that. So it's been pretty incredible to see. See, I love the podcast because I feel like it's just a great platform to get this information. Parents, but also practitioners need to be hearing this. And the second half of we talked about definitely got into a little bit more of like the nitty gritty and treatments and, you know, different type of treatment paths, but, you know, a little bit more about full long term effects of what's going onward.

Best of intentions. That doesn't. Yeah, you have great intentions, but if you don't have the foresight to really understand, it's not helping people. Yep. So I love that your podcast offers that all these different practitioners and that you talk to parents and do all these things.

I really think, I mean, to me, parents are equally as important on the team of, you know, providers. Like, hello, you're with your child.

Right.

Much more than any one practitioner is. And you know your child best. And I always encourage parents, like, you have very helpful information that you may not realize is helpful yet, but us working together is going to bring that out and we're going to be able to figure out, like, what is the best track, you know, what is the best treatment plan for your family, for your child, for you, whoever you know is the patient. Because every single time we get a parent in here with a child who's tied, the parent then lifts their tongue up and goes, am I tied too?

Yes, you are.

Here we go.

You are your whole family.

Probably like it's genetic.

Yeah. And then I don't know why our jaws are shrinking, but they are epigenetics.

You know, I feel like it's a combination.

Well, I mean, if mom can't breathe, baby can't breathe. Right?

Right.

And cellular. I mean, you can change those kind of dynamics in a couple of generations. We do it with plants and animals all the time.

Changed one direction, we can definitely change it back the other. You know, it takes time, but start now.

That's why I was like, I'm not pulling any teeth out of my kid's head.

Yeah, I'm so glad to hear that.

Me too. And my whole family thought I was insane. They're kind of starting to come around now. I don't know. We'll see.

It'll. It'll. Well, you know, you would think after, like, what your son has been through, that they could see, right, that, you know, he's clearly a different child. Yeah.

No, they're like, oh, you did a great job, Lindsay. Okay, don't dwell on it. You're not that awesome.

Like, you're like, wait a second. I took a child to, like, literally was completely out of it and helped him thrive again. Like, that's no small feat. That is huge.

I mean, okay, Lindsay, whenever you say, you know, like, well, we're not gonna pat you on the back for it, but he is doing much better.

Okay, you can pat yourself. I'll pat you on the back. You can pat yourself on the back. It's amazing.

It's really amazing. I'm just gonna rejoice in it. Like, we. When we come home from the dentist, like, I don't know how many, probably not a lot of people do this, but we drive home from our dentist, and I'm, like, in tears of joy, like, so thankful. The people that do this work, that have, like, helped me save our lives. Yeah. Like, yeah, it's completely.

I think it's also hard to understand the impact until you've lived through it and you're seeing it firsthand. Not necessarily, like, in a dramatic case, but, like, I think for some adults, like, they don't know. Like, they're probably living with this, and they really did. They just don't get that they could be feeling, living, experiencing differently.

So your sister doesn't believe that she has any sleep apnea, and she just got diagnosed with a heart arrhythmia. Like, you know, we have this thing in our throat that, like, it's genetic.

And by the way, midline. Midline defects, you know, is tight. You know, heart, tongue goes on, you know. Yeah.

So.

All right, well, this has been amazing. Thank you so, so much for joining us and sharing all of this. I know it's going to help.

Can I plug my website?

Of course you can.

Go ahead.

I was going to ask you there any last things you want to share, and if not, please tell us where.

To find you so you can find me. @airwaymama.com I have started a consulting service to help moms like me with complex kids that didn't get results early on and are still just kind of lost and really need some direction. That's awesome.

And we'll put all of this good stuff in the show notes. We'll also include. We'll include your website in the show notes as well. So if anybody's driving, you don't have to pause and try to write those down or anything. It'll be in the show notes. And yeah, I'm so excited for the work you're doing. It is so, so very needed. So thank you for that and thank you for being on the podcast.

Yeah, thanks for having me. Thanks for your work, too. This is. It's really. It's very important.

Thank you.

You're welcome.

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 forward/the 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 us over on Facebook on my Facebook page at Halle Balkan Biz on Instagram at Halle Balkan. 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.