?".
Hi everyone and welcome back to Airway First, the podcast from the Children's Airway First
Foundation. I'm your host, Rebecca St. James. Today on the show I welcome a panel of three
ladies, Amanda Gorolla, Dr. Vanessa Peterson and Jackie Becerra Lysing. Jackie is a dental
hygiene graduate from Loma Linda University and has been practicing as a clinical dental
hygienist for the past 19 years. After having her second child with Down's syndrome and
having limited resources, she decided to specialize her education in the field of myofunctional
therapy and received her certificate of completion from the Mayo Mentor Program in 2021. She
is now the owner and OMT of Upside Down Frown Care LLC. Her passion for knowledge in Airway
includes having taken courses targeting the Down's syndrome population through talk tools.
She has also obtained a level one oral habits program certification through the Breathe
Institute and is currently enrolled to take the TMJ massage therapies course to get a
better understanding of the complexities around TMJ. She currently practices myofunctional
therapy throughout various cities in the Inland Empire located in Southern California. It
was Amanda's passion for working with children and providing for her community that led her
into the field of speech language pathology. Amanda has a background in hospital, public
school and the private clinic settings where she has treated a variety of clients and disorders
including language disorders, articulation and pharyngeology, fluency disorders, Down's syndrome,
ASD, voice disorders, acquired neurological disorders and more. As a former athlete, Amanda
was drawn to Justin Sherman and Associates, strong team-based community and a close family
collaboration. There, her professional focus includes early intervention, articulation and
pharyngeology, and fluency. She is interested in learning more about oral facial myology.
Southern California native, Dr. Vanessa Peterson, studied biology and chemistry at Baylor University
in Waco, Texas. She returned to Southern California to attend dental school at Loma Linda University
School of Dentistry. Vanessa then headed north to Portland, Oregon for her orthodontic residency
at Oregon Health and Science University. She practiced at Kaiser Permanente for three
years and became the chief orthodontic specialist before following her dream to start her own
orthodontic practice in Lake Oswego. After returning to Southern California, she opened
a new practice, synergy orthodontic specialist in the Inland Empire area. All right, great.
Thank you all so much for joining us this evening. I appreciate it.
Thank you for having me on the show. Thank you.
Absolutely. All right. So, Jackie, we're going to start with you before we dig in. If you
wouldn't mind just sharing a little bit about your journey with your daughter and how that
led to your current passion. Okay, yes. So, my daughter who's now seven
years old, she was born at 38 weeks via C-section. We received the postnatal diagnosis of Down
Syndrome. And what that means is during my pregnancy, we didn't know that we were going
to have a baby with Down Syndrome. We did have soft markers for Down Syndrome, which
later on with an ultrasound, the results per my OBGYN were unremarkable. So, you know,
we didn't know until she was born. And so, for your listeners that don't know what Down
Syndrome is, Down Syndrome is a genetic condition that involves either a full or partial copy
of the third copy of the 21st chromosome. So, also known as trisomy 21, the most common
type of Down Syndrome, and that is what my daughter has. And so, the main trait that
comes with the diagnosis of Down Syndrome, and it's the first time I learned about it
is when she was born. And when we got the confirmation of the diagnosis is hypotonia.
So, now I know as a myofunctional therapist what that is, we look for hypotone, tongues
in particular, but that means low muscle tone. And so, I use this analogy with patients
now with low muscle tone and what that really means. And if you don't have a fitness background,
it's kind of hard to understand what hypotone is, hypotonic. And so, I use this analogy
and I want to credit Anna Gross, she's a baby SLP from the Breathe Institute. I took one
of her courses. She used an example of a beanbag. So, imagine a beanbag in your living room
floor, okay? And just how much surface area it takes. It takes up a lot of surface area.
Imagine sitting in a beanbag and all the effort and energy it takes if someone asks
you to stand up. It takes a lot of effort because of the, it's an unstable foundation.
That's how I describe low tone tongues. You know, it takes up a big area inside the mouth.
It makes the tongue appear large at times. And so, oftentimes we miss the fact that we're
looking at maybe smaller jaws, to be honest, and not really looking at the muscle tone.
Versus, so going back to the beanbag analogy versus sitting in a chair with four legs takes
up less space in your living room. You could stand up. The muscles that you have to engage
to stand up from a four-legged chair is quite easy. So, you know, that's how what I use
now, even to explain to parents to understand muscle tone, just takes a lot more energy
and effort where a beanbag is like floppy at rest. Normal muscle tone is, you know,
in contract on command. And so, that's what I use and that's how I understand it now.
But you know, when my daughter was born, you know, we get assigned a social worker, case
worker at the hospital. We're given a brochure with a list of providers. It's a lengthy list
and it's very overwhelming. You know, this is the future, our future, you know, with
our daughter. And one thing I notice is that the list just to name a few has providers
on there like an OT, a PT, an SLP and cardiologist. So, those are a few of the providers that
were on this list. And one thing I noticed that wasn't on this list is like an orthodontist,
you know, for early intervention care. Huge. Yeah, it is. Or even just a dentist in general
and myofunctional therapy wasn't on there. So, I feel that I wasn't, you know, this is
my second child. So, myofunctional therapy wasn't even on my radar. I really didn't know
what myofunctional therapy was at that time. But I feel that whether it was my mama gut
instinct or dental hygiene background that really led me to believe I need to focus on
breastfeeding my daughter to help her. I was thinking of muscles. So, really, I was doing
myofunctional therapy or trying to do it without really understanding it at that point. And
so, I knew this was going to affect her open mouth posture, her protruded tongue and her
speech eventually. Right. So, as a special need parent, we are connected immediately
with this type of diagnosis with our local regional centers, usually they're county-based.
So, with this connection, we're given support and resources. And so, at that time, our case
worker, and I want to say maybe at the age of three, so, you know, this is after we'd
been through therapies, Autumn was going through therapy at the age of three months. We had
a PT coming in-house weekly. So, working with these providers was not new to me and to any
parent with special needs, you will understand collaborative care is important and early
intervention is important. That's not news for us. But our case worker at the time actually
was a retired RN. So, she had medical background and when I asked her, you know, I want to
look for myofunctional therapists in the area, can you find me somebody to help my daughter?
She had not heard of myofunctional therapy at all. And she has a medical background.
Yeah. So, she, but she did try. And I think randomly, we happened to attend a Down syndrome
family like health fair. It must have been for one of the big events like World Down
Syndrome Day. And one of the vendors, this was in 2019, one of the vendors there was,
well, now we know, Amanda's boss. And she was a vendor there and I spoke with her and it
was like awesome. She actually understood and said, yes, I have someone on staff. I have
people on staff that have oral placement therapy background or, you know, myofunctional background.
And so, we connected from there. And I think we were lucky that that led into 2020. So,
with the pandemic, everyone was virtual. And that's how we met Amanda. She was the first
provider that we worked with that had this myofunctional background. And she had that
speech emphasis, obviously. And I think it took maybe a year of working with her later
that I decided to, you know, pursue going into myofunctional therapy myself because
it was a high need in my area. Again, nobody was doing myo at that time. It seemed like
at least in our area. And that's kind of led us here today. So, yeah, thanks, Amanda.
You're so welcome. I'm so honored to have influenced you that way. Amazing.
Yeah, absolutely. And you mentioned that you breastfed Autumn. Did you do the same thing
with your first daughter? So, my oldest is, he's my son. He's 12.
He's a son. Okay.
Yes. And so it's interesting because I am being a new mom. I think that you kind of
accept the hardships that come with breastfeeding. So, you don't have anything to compare it with.
And with him, he also had some sleep disorder breathing symptoms. And I do think that I
missed it with him. I have like with him being 12, I'm like, oh, I just missed that window
of helping him almost missed it. Luckily, he's in expansion now. But I was able to breastfeed
him. Now, he was a little different. He was born emergency C-section at 41 weeks. And so,
with C-section, you know, it takes longer for your milk production to come in. It takes
about five days. And it seems that, you know, milk supply takes longer. So, latching was
difficult. But again, you forget because it's your first time breastfeeding, you think this
is the normal, right? It's normal. This is what I'm going to accept. Now, but what I know now,
it's, you know, just because something is common does not mean it's normal. And I've learned that
the hard way. And most of my parents that see me do. So, you know, he had a hard time latching on
the left side. He had a shallow latch, which I believe to be what's a posterior tie now. The latch
was actually ended up, I had a cracked bleeding nipple on the left side. It was very painful.
He was gassy, had colic. His stomach was really distended. And, you know, again, I ended up just,
you know, kind of changing my diet. I said, okay, let me eliminate dairy. I stopped eating certain
vegetables. And it seemed to help. We even saw a GI specialist for him. But, you know, we were
switching bottles too, because he was bottle fed when I went back to work with breast milk. But we
successfully breastfed for 16 months. So I thought that we were doing great. But he also was a long
time pacifier user. He loved pacifier past the age of two. He also was a sleepwalker. And when I
brought this up to my family, they reassured me, oh, that runs in the family, you know, oh, Uncle
so-and-so, your nephew so-and-so, they did a little sleepwalking too. So, and, you know, he didn't
do it very much to where it was concerning to me. I just kind of accepted it and thought, oh, it's a
genetic, you know, runs in the family. So another thing too that's distinct with both my kids is
we sleep train them. So they didn't have problems going down. So I think that that's why I overlooked
all these little symptoms and little red flags throughout their, you know, you know, upbringing.
And they would go to sleep right away. You know, they would nap fine. My seven year old was in the
NICU. So when we brought her home, the nurses had her on a three-hour schedule. So it was pretty
easy transition for her. Whereas my oldest, you know, being a new mom, we had to use, we use the
baby-wise method. I'm not sure if you're familiar with that. But it just helps you understand the
sleep cycles. So like if they cry in between sleep cycles, you know, to kind of let them cry it out
a little bit. And then instead of jumping in and waking them up. So it worked beautifully for him.
And I think that's why I missed it. And it's because they were both getting good, good amount of hours
of sleep, but they weren't getting good quality sleep. Yeah, which is huge. Right, right. And that's
what I see a lot of my parents come in is they are getting the accurate numbers, you know, a required
number of sleep that they need for their age, but it's the quality. And that's what I started to look
at restorative. Exactly. Exactly. So you said something about that with sleepwalking, you were
told, you know, it's common, it's genetic. And that's something that we've heard a lot of parents,
they're hearing that. But that goes back to just because it's common to me, that's the same kind
of thing that that's great that it's genetic, right? Or that everyone in your family does it.
You know, I expect from a family where people just didn't sleep in and we wore it as a badge
of honor. We're just not sleepers four hours a night. You're thinking you're good, you keep going.
Right. Exactly. You know, now I know that's not a badge of honor. And I have, you know, kind of
backed up on that and you adjusted it. But I think that's really common. And I think that's
something that parents, that's one of the things they hear a lot of. Absolutely. That and and
snoring is also very normalized now. Like, snoring is normal. It's in our books and it's on TV.
It's that's what we do when we sleep. It's not what we should be doing. Yeah. Exactly. Especially
kids. And that's another one, right? It's so cute when a little baby snores.
Not really. Right. But, you know, we didn't know we know now. Right. But we didn't know.
So, Amanda, when you're working with and you can kind of guide me on this, I don't know if I just
say special needs in general or if it's different with, you know, the different, I guess, subsets,
you know, like Down syndrome and because of the different symptoms that they have.
When you're working with them, how is that different than when you're working with a child
that's not special needs? How do you know, what kind of things do you have to look for? And
how does that impact therapy? Right. So I work with children and adults with Down syndrome,
without Down syndrome. And when I'm working with my clients with Down syndrome, sorry,
there's a helicopter one second, I'm working with my clients with Down syndrome. I, first of all,
I'm taking into account that hypotonia, that one that Jackie mentioned, that low tone, that
right rest. We're not sitting, none of our body is sitting how it quote unquote should be.
And that coming from the body, from the PT realm, like the body needs to be stable for the mouth to
be stable, first of all. So that's where it's really taking the full team. So I'm thinking about
that hypotonia, which also can lead to some hyposensitivity or hyposensitivity leads to
hypotonia, I should say, too. So the hyposensitivity piece is where they're, when we are doing a
motor response, or when we're doing an action, we have to first sense where our body is in space
sensory, and then we can respond motorically or our brain can initiate the fire, firing to the
muscles per se. So kids with Down syndrome and adults too, I should say are hyposensitive,
so they don't feel where their body is in space as much as I do. And so we have to take a little
more stimulation to wake up the nerves per se. And that way they can then sense where their
body is in react better and use the muscles. So that's where it's like, what comes first,
the chicken or the egg, the sensory, the low three piece, then if we don't have sensory,
we don't have our muscles being used. And then also without muscles being used, we can't build
muscle tone. So it all relates that way. So I really think about the tone. I'm really thinking
about the sensory. I'm thinking about how maybe they learn differently than other kids. So usually
using multiple visuals, auditory, tactile, kinesthetic, as many senses as I can to
cue them and help them find their placements for articulation or swallowing. And also just also
that airway is a big one as well, because we know that their facial structure is different. And
that that tongue thrusts coming forward isn't just the low tone, but it may be airway related. So
I have to dig down deeper and see if there's something that we need to address first before we
can get to the rest of the treatment. Because without airway open, we're not going to be able to
we're not going to be able to get that tongue in and then start earning place at speech because
where the tongue likes to rest, that's where I like to think like that's their starting point
for speech. So if your tongue is going forward at rest, then it sounds like kind of start here.
So if your tongue is up against the upper back molars, and then lightly section to the
root of the mouth, then you can grasp on to the inside of the upper back molars and these
mouth. This is where our tongue should be resting up all the way back inside. Yeah,
all the way back inside on the spot. What we like what we like to say. And then speech can start from
here where our tongue anchors against the upper back molars on the inside there. And speech can
stay inside the mouth and move quickly and accurately. But if there's low tone, they're
usually down on the floor of the mouth. And the tongue is not anchored and it's flopping all
over the place. So inaccurate speech sounds. So that hypotonia, sense, sensitivity and the airway
all three really come into play when I'm absolutely in the drum. So what happens, you know, going back
to that visual that you had, you had the hand and it went all the way, you know, all the way back,
you know, to the mouth. What if you can only get this much of it up against the roof of your mouth?
The front. Yes. So the front of the tongue is up against the roof of the mouth. Well,
in terms of speech sounds wise, that's like, maybe good for temporary for one sound like your L.
Maybe you have your L sound, which we have worked with Jackie's daughter to.
The tongue is up, back sides are down. For a lot of our sounds, our tongue is anchored
sides of the tongue, upper back or against the upper back, inside of the molars.
And like that's that's also what I wanted to point out to parents and other speech therapists
as well as that we can't just treat the appearance or treat the symptoms of the disorder. Like, oh,
your tongue is interdental when you do an L sound. Let's just teach them to put it here.
Oh, your tongue is out when you're doing S sound. We'll teach you to put it in like close your
teeth, put your teeth back. That's great. And in structure, maybe they can do that when I ask them
to. But when they're out and about, they're not going to generalize because the real issue is
why is that tongue forward in the first place? Right. Right. Back to the root cause, which we
talked about that a lot on here. And so, Dr. Pearson, we talked about how my oh, you adjust
for special needs patients when you're talking dentistry. What about things like these, these
expanders and some of the things we've talked about? Yeah. Any of that change?
It's huge. I mean, an expander is so important in these kids with speech and airway issues. And
it's really interesting in the orthodontic field because I went through residency over a decade ago.
And even in my residency, there was a little talk about oral myofunctional therapy and it was
almost kind of a running joke among the residents of like, okay, give this kids some exercises,
right? Like, okay, they're not going to do it anyway. And it was never really emphasized. And
then the other thing was like, there's a lot of traditional orthodontics of you don't put an
expander in a kid unless they have a cross bite, right? And so, you know, in my, you know, career,
that's kind of what I was trained to do initially. And then as I practiced for over a decade now,
you know, you start to see things in kids and you really pick up on patterns of facial growth.
And you see that in patients who have breathing and signs of snoring and speech issues, you see
that they have low muscle tone, you know, their mouth breathers, their tongue, you know, hangs out
and you're like, no, there's something that needs to be done here. They don't have a cross bite,
but they do not have room for their tongue. And then a big part of my kind of metamorphosis as
far as learning more about how this all interacts is getting a 3D x-ray. So the combi, like once I
had that and I was no longer seeing things in two dimensions, I was seeing the airway, I was seeing
the arch form in three dimension, you know, you can see so much more and it's almost like you
can't unsee it, right? And so at that point, I started doing expanders early and earlier. And
as I did these expanders, you would just anecdotally get these, you know, this feedback from parents
of like, man, his headaches are gone. He's sleeping better. He's doing better in school,
paying attention. He's speaking better. Wow. You know, and it's just like, wow, you can really see
that. And so, you know, I started doing them earlier and earlier. And also the technology
keeps getting better, right? So I'm doing even 3D printed expanders now, which is such a better,
just overall experience for the patients because there's no spacers and there's no bands. So
you need very little compliance to get it on. It's way easier to clean and there's more room for the
tongue. And so a lot of patients can continue to do speech therapy while they have the expander in.
And these are permanent, right? These are ones that can put in and out. These 3D ones. So these
are permanent. These are glued in. You have options. You have options of a removable. I still
believe that the glued on ones are better. And, you know, I'll do them as early as age three. I
really prefer to do them later. Like, you know, if we see a big issue, like four to six, but in a
significant patient, you'll do it as early as that age. And I mean, these patients are wiggling
all over the chair and you can still get it in. No problem, right? There's just so much better for
a patient, right? But I even have that experience with my son, who's six and, you know, has been in
speech therapy since he was three, right? And then you put an expander and you're like, oh,
well, there we go now. Now you sound a lot better, right? And so, yeah, that's just been my experience.
You're listening to Airway First, the podcast from the Children's Airway First Foundation.
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this podcast and the opinions expressed here are not a medical diagnosis. If you suspect your child
might have an airway issue, contact your pediatric airway dentist or pediatrician. And now let's
jump back into today's podcast. I know that we've heard
what you're saying about getting an orthodontist or having your child seen by an orthodontist
at the age of seven. Is that too late? In some regards, it is. The facial growth is 90% done
by the age of 12. There are different parts of the face that stop growing sooner than that,
like especially a patient with an underbite tendency. There are a lot of things that stop at
age closer to nine. When it comes to the muscles and the balance of the structures,
what I always explain to parents is the sooner you get that muscle memory doing what it's
appropriately supposed to do, rather than the bad habits, the easier it is to undo and have
everything function appropriately. Seven is still a good age for most people, but if they have a
cross fight, if they have breathing issues, if they have speech issues, then sometimes it's
appropriate to bring them in sooner. I'll put some links to some other episodes for parents who
may not have heard them to talk about things such as going and listening to your child sleep at night.
It sounds kind of stalker-ish, but stalk them. Do it. And don't do it just one night. You space it
out because you'll start to see a pattern and you'll see, oh, maybe they were just ingested that
night, or oh, no, it really is an issue. Just some things that parents can watch because,
at least for me, and I assume other parents experience this, when they're teeny teeny,
you're with them all the time. But as they get older, you put them to bed, you go work, or you
watch your show, or you read, or you do whatever because they're in bed, it's your time. So, you
know, so many of us miss these signs and symptoms that are there at night. So, Jackie, and I guess
actually really all of you, when it comes to specifically, let's just focus on Down syndrome
children. Are airway issues more common with them? Just kind of across the board?
Absolutely. I do have a few points, just physical characteristics that are common with Down syndrome.
I did get this from the CDC website, but I'll emphasize a little bit as I go along and kind of
list them. So, we talked about hypotonia a lot between Amanda and I. So, poor muscle tone,
which also means loose joints. And if you think of an infant or child with Down syndrome,
we're talking not just the tongue, we're not just talking low lip tone, low mid-face tone,
we're talking whole body. We're talking organs or low tone. So, you know, with that being said,
then think about the jaw joint, right? So, the muscles surrounding the jaw joint don't have that
strength and support, and that's why you see that open mouth posture. And with the low tone tongue,
well, it's blocking the airway already. So, you know, that's one point. The second point,
flat faces. Usually, flat faces anatomically, so that means they have smaller bridge to their nose,
which then means they have smaller nasal passages. It's going to be a lot harder for them to breathe,
you know, efficiently be nasal breathers, right? When they're, we're talking tiny little spaces.
Number two, short necks, you know, already, that's a smaller, you know, airway. We have small ears,
and so small ears can lead to ear infections. And when we already have that protruded tongue
sitting, you know, outside in this kind of natural tongue thrust, then they're not able to clear the
ear canals properly. So, it puts them at, they're just predisposed to these higher risk, you know,
for ear infections. All of these questions are on my basic intake for any child. But, you know,
I looked down, I'm like, my child with Down syndrome, all of these are marked off. So, you know,
and, and there's other things, you know, that are not completely related to myofunctional therapy,
or oral facial muscular disorders, but, you know, tiny white spots in the iris of the eyes,
small hands and feet, you know, small, smaller height, and also medically compromised. So,
you know, our kids, because of their facial structures naturally, will have, you know,
higher risk for upper respiratory diseases and conditions, like pneumonia, bronchitis,
COVID, you know, and obstructive sleep apnea. Most importantly, obstructive sleep apnea.
So, yeah, it's, and, and I feel that, you know, Autumn was, was her pediatrician
asked me at the age of five, I think it's kind of like a check off the list, right, for her medical
chart. They do check for obstructive sleep apnea, but it literally was her asking,
do you have any concerns with her sleeping? No, that was it. No sleep study was, was done,
even though I felt confident and I knew what I was doing. But nothing else was added to that
screening process. My intakes for screening, kids, typical, or, you know, with Down syndrome or any
type of special needs, their, the parents are filling out three sleep intake, you know, questionnaires
on positions of sleep, different symptoms that will help me either refer them to an ENT to really
request the sleep study, or see if they're, you know, okay to start myofunctional therapy. So,
yeah, it's, we're kind of missing a little bit of that. Yeah. Yeah. And it's, and it's interesting
because you had a real life experience that goes right back to something, another guest,
previous podcast, Dr. David McCarty. And one of the things he shares a story of a patient and he
said, how is your sleeping? And he said, great. Well, that's just such an open question, you know,
and you're an exact case in point, you know, how is your child sleep? Okay, fine. I would have said
the same thing about my children and then you come to find out, well, no one's snore. I didn't know.
So, yeah, you know, from the medical side, we need to ask better questions. Right. Patients come in.
But then also, as it's been mentioned by some other guests, as patients or in this case, parents,
it's our duty to come in with some of these more specific, maybe they're not going to ask us.
So you have to be an advocate. You have to be able to say, Hey, is this normal?
Right. Is this okay? Or I have a concern here. Exactly. And so also just to kind of segue
into breastfeeding and what that was like with our gym. So we were lucky enough to get, you know,
obviously lactation consultant help right away. I'm lucky enough to have a family that's super
supportive in breastfeeding. It's not always a case with everybody. But when it comes to the
physical characteristics, so when we're talking about low tone and the protruded tongues, well,
the latch is going to be more difficult naturally, right? The ability to drain the breast is going to
be harder. And also when we're dealing with heart congenital heart defects, then the endurance is
not there. Already for typical babies, you fall asleep at the breast. That's pretty common. But
when you're dealing with heart defects, it physically is hard. You know, you're going to tire
out and not, you know, the endurance is just not there. So it's even more important, I think,
for our Down syndrome population to get this help early on. Or and if breastfeeding is on an option,
just educate yourself. And like you said, be an advocate for your child and just maybe work with
those early providers that are assigned to you right away, the OTs with feeding specialties,
speech and language therapists have feeding specialties or oral placement therapies.
Know what kind of cups are good to use, you know, what cups to avoid, things like that,
little small changes at the beginning. If you know, you have to bottle feed, that's okay. But
just be aware and know, you know, your child is not using certain muscles. Yeah, that's going to
kind of just lead them into that low tone still that we're trying to improve. Yeah, I can add to
that list. Yeah, please. Yeah, for Down syndrome kids, the other things that I see is, you know,
their mouth breathers, right? Consistently mouth breathers. And that means that they're not using
that belly breathing, they're using the more shallow breathing, right? Getting that connection.
But the other thing, because they're low muscle tone, they're not chewing their food properly
and enough. And so a lot of those kids end up having GI symptoms, right? And then they get
perpetuated because as they're trying to figure out why their tummy hurts and why they're having
issues, right? Then they go on different diets where a lot of them will go to like a liquid
diet or a softer diet to try to correct that, right? And that's almost
no one not doing that exercise that they needed. Yeah. Yeah. That we need there. Right. Right.
All those pouch foods. Right. They became huge recently and yeah, all of us in OM are going, no.
Right. And I used them. Yeah, I was I was about to say this is I swear just about every podcast.
I have to say to parents out there, all right, we've all done this. We just did on something
we've all done. So let's take the mom guilt, the parent guilt. Let's just put it over here.
You didn't know because man, I am just as guilty of taking a pouch and going like this while I'm
driving or you got the grocery store. We've all done it. So it's OK. We're going to start from
where you are and keep going forward. So so Dr. Peterson, that if you are a parent of a Down syndrome
child and you're looking for pediatric dentist or an honest, what are some of the things you
should be looking for specifically when you you're going in and you're looking at their website and
you're interviewing them trying to make sure they're the right medical provider for your child.
Yeah. You know, that's a difficult thing sometimes to find before you enter the office.
But, you know, I think that the intake form, the comprehensiveness of the intake form and the
questions, right? If they're asking about sleeping and breathing and things like that,
you can use some of the like more sleep focused, you know, websites. There's a lot of organizations
right where you can you can try to find providers that way. I think a lot of just, you know, my
experience is the moms in the community, right? That's like the best way. And, you know, I think
that here locally, we're very lucky to have like one of our pediatric dentists is just stellar and
so comprehensive when it comes to this. And she's so in tune, right? And so she's kind of, you know,
the word gets out quickly. But yeah, yeah, looking on your insurance or looking on the website,
you know, it's still very tough to find people focused on that. Sure. Sure. Yeah. And it's,
you know, it's something that I think we've all kind of run into at this point. It's hard to find
just airway specific provider sometimes too, or, you know, somebody that has taken courses and is
actually looking at that. So yeah, it's just it's just not easy. So it's hard to find
therapists, speech therapists with background as well. And that's just I know what we're all
advocating for is having every medical or even academic speech therapist per se having back
background, some sort of background and knowledge in airway, even if it's surface,
just knowing what to recognize to then refer for more support. Because I mean, it goes unnoticed
still even by the professionals who you think should understand that. So yeah, that's very happy
that more and more people are starting trying to spread the word to to your way more.
Yeah, we've even had a discussion, an internal discussion of how do you get they already have
so much on their plate, but how do you get teachers involved for the signs and symptoms
to look for because they're with our children. Yeah, eight to 10 hours a day. And they're going to see
that that, you know, this particular child is a mouth breather. Or when they're younger and
they take naps, I mean, they're going to see some of these things and yeah. So it is all about
getting the word out there. It is. I think it gets a little bit complicated with the public
education system because if a teacher is screening for something like that, the school somehow has
to be able to provide a service that way. It's not as easy as, you know, they can't diagnose
anything like that. So it does get tricky. I know what I do with with my daughter is,
you know, Amanda has a treatment plan and goals for for autumn. You know, we have two speech speech
language pathologists. One is school based and one is through our insurance. So Amanda is through
our insurance. She focuses on certain goals. And I share that that treatment plan and goals with
her school based SLP. So then they're, you know, collaboratively, maybe they don't speak to each
other, but they know what they're working on. And that has seemed to help broaden like what we work
on where I'm lucky enough that autumn gets to have a little bit of, you know, the best of both
worlds, you know, like we get language development, expressive language, you know, and Amanda does that
as well. But we work a lot on articulation, the alveolar sounds. I want her intelligibility. I
have her focus more on that aspect. So unfortunately, I know you're asking more like, how do we
screen? I guess it gets a little bit, you know, sticky. But yeah, not even screening, but just
watching for it, because I'll tell you what, you know, once you've seen it, you can't not see it.
But I have I have stood in the grocery store with my children and you get this kind of
and they're looking over there and you're going, yes, I know that's a mouth breather. Stop because,
you know, now that you've seen it, we're all watching for it. Right. Right. Right. And one of
the things that you mentioned that I think is so huge. And to me, it's it just seems kind of like a
well, no kidding, but it is going to it's such a paradigm shift instead of the silo, this collaborative
approach of providers, you know, as as, you know, orthodontists and dentists and pediatricians and
SLPs and myofunctional there is all together. And, you know, it's you y'all are already doing that,
but not everybody is kind of going that direction yet. How do we get again, it's an opinion, I
understand that, but how do we get the focus moving that way? Because this kind of more
comprehensive holistic approach will allow us to get to the root.
It takes a team. We all know that it takes a team. And sometimes we hear that word team and parents
think, okay, that means like a bunch, a group of professionals that I go to separately,
individually, and then I relay the information from one to the other,
which is very common now. This is like, this is your team, but doesn't mean they're collaborating
together as a team. And so when you take that route, you, you might get some progress, sure,
because information is being shared, but it's not quick enough progress or not quick progress.
And also, like the professionals can't don't, if they don't talk directly, it's the information
could be, you know, misconstrued or or like it's misinterpreted because it's being shared in multiple
multiple ways, like telephone. So that I'm really glad you brought this up because I think
inner collaboration is very important. And if, if a therapist, if you have a therapist as a parent,
ask them to sign that whatever permission form that you need to sign to then have your therapist
directly contact the other professionals so that they can talk directly and then follow up on that
too, because I know like therapists have a lot on their plate. And I when I see a parent
checking with me, hey, how is, how is checking in with the school SLP? That it's a nice friendly
reminder to me. And I also like to keep everybody accountable to do that and actually make the
progress. So look for that inner collaboration and advocate for it. Yeah. I typically get the help
from parents when parents come see me, I might be the third provider they've seen. And then I start
asking questions about maybe their dental or who are they seeing who's your pediatric dentist.
And so if they end up, you know, doing a therapy program, I email them so they know, hey, I'm here.
This is what I'm doing. You know, and I if it's an orthodontist, you know, Dr. Peterson and I,
we have a great collaborative relationship. I work out of her office actually. But just awesome.
If I do have another orthodontist that that sends me a lot of referrals for your typical kind of
tongue thrust open bite relapse cases. So it's interesting because I actually have met some
providers through just like some of the other providers that my parents, you know, the patients
are already seeing. And I just make that like a way like to introduce myself, whether it's email.
And some don't contact me. That's fine. Others do. And those that do wanting to learn. And I've
I've been lucky enough to meet people that way, I think. And then and then and then they're interested
in they want to learn more on how can I screen like what what do I do? Who do I refer to? So
I end up being a little bit of the middle person. But you know, I'm all about like, I can't handle
all the patients in our area. I want more providers to learn so we can help, you know, people that
need it. So I think the more the more that we could get on our team, the more awareness we
could bring and just, you know, comes to town to education, educating our parents. But they really
are the ones like, like Dr. Peterson said, you know, it's the mom, the mom squads that are
you talking about you. It's so funny. I'll have some parents come in and they're like, oh, you
also work on so and so's kid. I'm like, that's hip. I can't say but I can't say I wink at them.
And they're like, yeah, they so it's just so funny because the circle is actually really small. So
yeah, like Dr. Pearson said, the word kind of gets around. And yeah, once once a parent has a good
experience with having their child just thrive by breeding better, they're going to talk, they're
going to it's going to be good things. They're going to want all our friends to bring their kids
in as well. Right. And we call them the airway mama bear army. Oh, there you go. I like that.
Because they do they all work together and they all share and that's what you have to do right.
Yeah, you have to be an advocate. Exactly. Which is, you know, why we do the show because we have
to get more of the information out there so that it's in their hands so they can advocate for their
child. Yeah, absolutely. In the in the orthodontic world, I feel like the field is about 20 years
behind. And right now, we're just trying to advocate for people to come in early, right?
Because still the reason like that like the public mindset is wait for all those baby teeth to come
go out and then see. And by the time you get there, oftentimes it's too late, right? And you're
trying you're trying to squash the narrative of orthodontist just want to do early treatment for
more money in their pocket, right? Because that's like that. That's the fear. And so if your child
has teeth that are all touching when they're little, it's fine. So don't even worry about it.
Right. Right. And so that's the narrative that we're still trying to overcome. We haven't even gotten
really in the public mind to like, oh, you know, orthodontist affect growth and and development
and airway and so much right there's so much more that we're addressing. But one of the things that
I think is helping. And what I see is all of the orthodontic conferences this year, we're focused
on sleep. It's becoming a buzzword. I don't know if any of you guys ever full. Yeah, it's it's super
exciting, right? Because we're getting more and more knowledge and more people are debating it.
I don't know if you guys have seen the Netflix documentary open wide. But you know, people
are starting to talk about it. It's certainly controversial because new information, people
don't like change, right? And so, you know, it the word is getting out slowly, but surely. But the
best way is is the boots on the ground, the moms, whenever you you have a parent that says, wow,
my kid is thriving, I really see this and they're the ones that live, eat, breathe, see their kids,
you know, how they function every day. You have the ability to say, OK, you now have this information.
Tell your friends. Yeah. Yeah. And yeah, for those that are listening, I will put a link to that
documentary as well as heal. Both are on Netflix in the show notes. And there's some conferences
like Airway, Palooza. And there's a dental sleep conference in Houston. It's I believe dental
sleep conference dot com. I'll put all those in the show notes because these are all ones that
I know their collaboration here is another one. So we'll put those in the show notes for people.
This this weekend, the Breathe and Thrive Symposium through the American Laser Study
Club is going on in San Diego. There you go. Yeah. That's right. That's right. Dr. Zaggy's
at that one. I know. And and and Pinto, though. Yeah. Yeah. There's a lot of people. So I'm
getting some FOMO not being there. Are you? I am. Are you? Yeah. Yeah. It should be a good one.
It should definitely be a good one. Yeah. So usually at the end of every episode,
I like to hand it back to our guests because y'all are the experts. You're the ones that have
lived the journey and that are trying to help the kids that are out there.
I will leave it to you for the final word for our parent listening audience.
Jackie, we could start with you. Well, I think a lot has been said already about, you know,
just being an advocate, definitely asking questions. When you're not you, you are the parent, you know,
when something is not right and just find another provider. I think that sometimes even culturally,
you're afraid or you say the doctor is, you know, the say all and then you stop there.
And I think that, you know, that that's that's not a good outlook when you're really striving to
find out what's going on with your child. I tend to when if I've been, you know, getting
if I have a patient that has been through different providers and they come to me,
sometimes there is no diagnosis and I might be part of the journey of getting that diagnosis,
you know, and so I think parents just maybe even just need that guidance a little bit. So
definitely find a provider or therapist that connects with your child. Number one, one that is
in tune with your beliefs and one that's going to advocate for your child as well. So I think that
alone can help a lot. Yeah, I love that being in tune with your child as well. That's huge because
if there's no connection, your child's not on board. Right. Exactly. Amanda.
The other report is that's number one importance versus the report. It doesn't
matter what kind of therapy you're going to do. I figure backing off what Jackie said,
start early, find the professionals that you feel like you need or connect with your child,
and don't be afraid to get second opinions. There have been many times where I've
referred to an ENT for airway obstruction, possibly I can't diagnose, same as having
your own tissues. I can't diagnose, but we work with the repercussions of it every day.
And they still like it brushes off or goes unnoticed. And I say, you know what, don't like,
that doesn't mean it's the end. Find someone who knows what exactly to look for, find that second
opinion. And don't let that, if it feels uneasy, like there's still something wrong,
but they're telling me that it's okay. There's probably still some sort of that instinct. So
follow that instinct. Yeah. And I'll piggyback off of that. Getting multiple opinions is really
helpful to just understand that knowledge and even know what questions to ask. But in my experience,
I get families who've been to multiple consults and they're almost overwhelmed. And so one of
one of the other things is finding practitioners that are willing to help you navigate and understand
all of those different things rather than the paternalistic approach of just do what I say
is right because, you know, I know what I'm doing, right? You want to make sure, like, you know,
these parents, they want to make sure that they're making the best decision for their kid. And so
if there's practitioners and providers that are willing to explain that and do the work of the
communication, right, that's going to help make you feel more comfortable with, okay, we have a
comprehensive plan moving forward. That's excellent. Awesome. I think all three of you for making time
this evening to come on and for, you know, sharing your story and really helping our listeners understand
just the differences that the Down syndrome population is going to have to
contend with when it comes with airway and sleep. So thank you so much. Thank you. Welcome. Yes.
Thanks again to today's panel of guests, Dr. Vanessa Peterson, Amanda Garola, and Jackie
Becerra Lysie. And each of you are listening to today's episode. If you're new to our podcast,
please don't forget to subscribe. And if you enjoyed today's episode, leave us a review or comment
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If you'd like to be a guest or have an idea for an upcoming episode,
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Take care, stay safe, and happy breathing everyone.