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BackTable / ENT / Podcast / Transcript #119
Podcast Transcript: Children with Complex Sleep Apnea
with Dr. Javan Nation
In this episode of BackTable ENT, Dr. Javan Nation, a pediatric otolaryngologist from Rady’s Children Hospital in San Diego, joins Dr. Shah to speak about the assessment and management of children with complex obstructive sleep apnea. You can read the full transcript below and listen to this episode here on BackTable.com.
Table of Contents
(1) Risk Factors for Sleep Apnea After Tonsillectomy and Adenoidectomy (TNA)
(2) A Multidisciplinary Approach to Taking Patient Histories
(3) Dentistry in Complex Cases
(4) Expert Tips for Physical Exams
(5) Sleep Study Considerations
(6) Weight as a Risk Factor
(7) Sleep Nasendoscopy (SNE) and Drug Induced Sleep Endoscopy (DICE)
(8) Defining CPAP Success
(9) Secondary Surgical Options and Approaches
(10) Advancements in Care for Complex Pediatric Cases
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[Dr. Gopi Shah]
Hello, everyone, and welcome to the Backtable ENT Podcast where we discuss all things ENT. We bring you the best and brightest in our field with a hope that you can take something from our show to your practice. My name is Gopi Shah and I'm a pediatric otolaryngologist. I'm here today with a very special guest. I have Dr. Javan Nation. He is a pediatric otolaryngologist at Rady Children's Hospital in San Diego and an assistant professor of pediatric otolaryngology at the University of California San Diego Department of Otolaryngology/Head and Neck Surgery. Javan is here to talk to us today about children with complex sleep apnea. Welcome to the show, Javan. How are you?
[Dr. Javan Nation]
Very good, thank you, Gopi. Thanks for having me on.
[Dr. Gopi Shah]
For our listeners who may not know, Javan and I are contemporaries. I think of you as a contemporary because we interviewed at the same time for our fellowships in peds. I remember meeting you, I think, at the MUSC fellowship interview. I don't know if you remember that or not, but I have this vivid memory of talking to you and being like, "I know him."
[Dr. Javan Nation]
Oh, wow. Great memory. I couldn't remember exactly where I met you. No, but I definitely remember meeting you on the trail because we met at a few different spots.
[Dr. Gopi Shah]
All right, Javan, first tell us a little bit about yourself and your practice.
[Dr. Javan Nation]
Absolutely. Like you, I finished in 2014 from my fellowship. It's so fun being on the interview trail meeting different people because a lot of those relationships can carry forward in the future. We never know we're just getting to know each other, but it's so great because you realize when you're out there, it's such a small world of pediatric otolaryngology and every relationship you make is meaningful because we see each other over and over again. Everybody is so special in their own way. I've been out going on 10 years now.
Since 2014 I've been practicing and when I started, Rady Children's had a special need for somebody who could really focus on these children with complex sleep apnea.
Every practice is going to have these certain patients where they fall out of your typical norm of pediatric sleep apnea and there's something about them that makes them more complex. Lots of different things can do this. Maybe it's because they're young or they're infants, maybe it's because they've already had their tonsils and adenoids taken out and they have residual sleep apnea. Or maybe it's just because they have a lot of other comorbidities that make them extra special.
Our practice had these handsets of these patients and they really needed me to fill this void and I was excited to do it. What my hospital did was actually send me around the country to visit four different places. I went to Stanford with Peter Koltai, went out to Cincinnati with Stacey Ishman, and went out to Colorado with Norm Friedman. I went to the University of Michigan as well.
I got to see what these institutions were doing for these patient populations. Some of them had complex sleep, multidisciplinary practices, and then some of them were just well-known people who were thought leaders in this area. I got to collect all that and bring it back to Rady Children's and I did it with Dan Lesser, who is a pulmonologist. We were a team tasked to make this happen. We brought this back to Rady Children's and started our complex sleep clinic. It's been very rewarding and we've learned a lot over the years.
[Dr. Gopi Shah]
It's really cool that you got to travel with another specialist and go to several places in the country. How long did it take? Over how much time did y'all go to visit Stanford Michigan and Colorado?
[Dr. Javan Nation]
We did it over a year.
That first year out, we were talking about the clinic working with the administration on how it's going to be structured as well as going around and visiting these places. Each visit was two or three days.
[Dr. Gopi Shah]
What y'all do on those visits?
[Dr. Javan Nation]
Generally, we would spend a day in clinic, especially if they had a multidisciplinary clinic, we went to see how they ran that clinic. A lot of times we'd spend time in the operating room watching them do different secondary sleep surgeries. Then sometimes we'd spend time with the pulmonologists, we'd spend time with the respiratory therapist and really just get a feel for how things worked for them and how they structured this practice for these patients.
(1) Risk Factors for Sleep Apnea After Tonsillectomy and Adenoidectomy (TNA)
[Dr. Gopi Shah]
That's great. Let's get into y'all's practice then because that sounds like a very rich background and training for it. Now, here we are 10 years later and we can go into it. You briefly mentioned some of these children with complex sleep, we talked about comorbidities. We've talked about the kids who may have had TNA and they still have sleep apnea. Let's get a little bit more specific about who these kids are and how they present for you. What are their risk factors? What do you normally see?
[Dr. Javan Nation]
A lot of times these are patients I'll see in my general ENT clinic and it's really nice to have a place to send these patients. It's nice for the parents as well and for the hospital, in general. You come across a patient who-- Let's put some examples out there. Let's say I see a patient with Down syndrome who's already had their tonsils and adenoids out. For all these patients, we're going to get a postoperative sleep study and if they're still symptomatic and they still have sleep apnea, it can be very challenging to decide what to do next.
In the past, you would send them to pulmonology and say, "Go see the pulmonologist. They're going to talk to you about CPAP." Then the pulmonologist would see them and say, "Maybe there's some adenoid regrowth or something." They'd have a question so they'd send them back to see us. These families are getting bounced back and forth between the specialists. Now, you see these patients in your general practice and you refer them into the complex sleep clinic. It's our home. It's our catchment area for these patients. If there's questions, you'd not have for pulmonology or for craniofacial surgery or for orthodontics we can handle it then. We'd refer them into that clinic.
Generally, we self-refer in this clinic. We've talked about opening it up and having pediatricians and other people refer into it, but we've found that it's actually more high yield if the specialists only are referring to it. They're all coming from ENT, they're all coming from pulmonary, they're all coming from craniofacial surgery as well as genetics and sometimes neurology. It's that I'll come to an elite bunch where you're by yourself in clinic and you're like, "Wow, this patient's complicated. What should we do next?"
After I see them, but then most of the time when we're thinking about these patients. We're in the group multidisciplinary setting of all the specialists together in one room speaking with the family and trying to figure out what to do.
[Dr. Gopi Shah]
That's basically the child sees all of you guys then in one setting or how does the patient visit go in the multidisciplinary complex sleep clinic?
[Dr. Javan Nation]
It's a great question.
[Dr. Gopi Shah]
Or you'll pre-round on these patients and just decide who each kid needs to see or how do y'all just have rounds at the table at the end of a certain afternoon and have a list of patients? Tell me how it actually works.
[Dr. Javan Nation]
Great question. First, we'll sit down before the clinic starts and we'll go through all the patients. We have our amazing PA, Anita Lazar, who will put all the patients together.
[Dr. Gopi Shah]
I know Anita, shout out to Anita. I've worked with her. She's so bright.
[Dr. Javan Nation]
She's the best. We're so lucky to have her in San Diego.
[Dr. Gopi Shah]
Absolutely.
[Dr. Javan Nation]
She'll put them all together and we'll sit down for about 30 minutes before and go through all the patients as a group and say, "Here's who's coming? Here's their medical background," and we can review the sleep study together and just prepare for the patient. Then we all go see the patient together. This is something that's evolved over time. We used to see the patients separately. I'd go in by myself and talk to the family and then pulmonary would come in and talk to the family and we'd all have separate visits, but what we find works better is doing it all together at the same time. The reason why is the patients don't have or the families don't have to say the same thing over and over again.
It works for the families but it also works for us because what I've really enjoyed is listening to the history that the plastic surgeons are getting or the pulmonologists are getting. I'm learning a lot from them as well and they're learning from me because we're all coming at this from a slightly different angle. Then really what it comes down to is working through our treatment algorithm together is the best way because there's really no right or wrong answer for what to do. In many cases, it's a conversation with the family, and having that conversation together is the best way to go about it because we can say, "Let's talk about orthodontics. What are the options here?"
We say, "What did the soft tissue look like?" Then if the plastic surgeon's say, "We can talk about orthodontic surgery," or whatnot. Having that conversation together with the family, I think is more valuable than talking about it afterwards, and then calling the family with what we decided because it's really a shared decision.
[Dr. Gopi Shah]
The thought process for everybody is happening at the same time and then you can actually discuss it together at that moment and then talk and bring the family in at the same time. That sounds pretty awesome.
[Dr. Javan Nation]
Exactly. Right. Because the family's input is just as important as anybody's because it's a shared decision with them. Right? In some cases, the idea of going through orthognathic surgery doesn't sound so bad to them. Other times they hear that and they're like, "No, let's think about something different."
[Dr. Gopi Shah]
We've talked about the kids who are going to be the ones that had the TNA and we still have some sleep apnea. A lot of our children with Down syndrome, who will have residual sleep apnea, sometimes our kids that are obese who maybe have had TNA are still having symptoms. We've talked about craniofacial kids or kids with hypotonia, syndromic, other syndromic kids. Achondroplasia, I'm sure, will come in as well. Those are tough, that's a tough group.
And am I assuming correctly in saying most of these kids have had a TNA or because we also find that there's a handful, especially the young kids who haven't had TNA yet? I think of my Achondroplasia babies, a lot of them will get these sleep studies when they're like three to four months because they want to, maybe we're looking at some concern at the foramen magnum and is there any concern of sleep apnea? Now we have the sleep study and maybe the central component looks fine, but now we have this obstructive component, but there are four months.
Do you have kids like that too? There's definitely, not most of them, but there's these, I feel like we're seeing more and more of even some of the kids, post TNA, that haven't gotten better, that maybe we haven't done the TNA on, or super tin or-- Tell me in your experience.
[Dr. Javan Nation]
That's exactly right. Yes, we have a handful of Achondroplasia patients. Yes. Just like you said, we see them at a younger age because, yes, we're getting a sleep study before the age of one. Yes, sure enough, they don't have big tonsils and hardly anybody's going to do a tonsillectomy on anybody under one, especially if they're not enlarged. Right?
[Dr. Gopi Shah]
Right.
[Dr. Javan Nation]
Yes. That's a very challenging patient population as well. We see a lot of cerebral palsy patients.
[Dr. Gopi Shah]
Yes. The hypotonia. Right? Those are always difficult as well.
[Dr. Javan Nation]
Yes. You mentioned craniofacial patients. A lot of patients with cleft palates, any craniofacial disorder, if their skeleton is small, their airway is going to be small and they're at high risk for sleep apnea. We see a lot of craniofacial patients who have already had a distraction maybe when they're younger. Because, generally if they have craniofacial deformities and they have sleep apnea, when they're an infant, they're going to start with a distraction.
A lot of these patients will come back when they're five and they've already had a distraction and now they have very severe sleep apnea and they're not tolerating a CPAP. Yes, it's a very diverse patient population and it really helps to have all the specialists there together to figure out the best options.
(2) A Multidisciplinary Approach to Taking Patient Histories
[Dr. Gopi Shah]
When you say you'll get your history together, I think that's super interesting. I'm glad you have that perspective because I want to know what you look for specifically as a pediatric otolaryngologist in your history? What if you were now being in a multi-D clinic simultaneously with your partners and other specialties, what else do you now pull into your history? Or are you looking for that's like, "Oh Yes, I need to, this is important as well."
[Dr. Javan Nation]
Oh, that's such a great question. I've pulled more medical stuff into my history. For the younger patients, I'm going to ask about reflux. I think about vomiting at night because the pulmonologists are very concerned, right? They don't want to fit this patient with the CPAP and put a mask over their mouth if they have vomiting issues. I think a lot about it, so a lot of these patients will have G-tubes and we think a lot about the feeds and if they're getting continuous feeds at night, all those safety things that the pulmonologists are considering that I'd never really thought about before, I now consider.
From the craniofacial surgeons, I've learned a lot about when they can intervene on the craniofacial skeleton. They were the ones who actually taught me to start looking at the teeth. The plastic surgeon would always look at the teeth, he'd look at the bite, he'd look for a crossbite, he'd look at mixed dentition, and I used to think like, "Why is he looking at this? Why does this matter?" Really for him, before he can do anything, he has to get the teeth set up just right. He's going to have them see the orthodontist, orthodontist going to get him in braces, do the expansion, whatever they have to do. , before he can do any changes to the skeleton.
The teeth are so important and it helped me appreciate that because a lot of these patients, what you see, especially like the cerebral palsy patients who've never eaten, don't have those bite forces. The bite forces really help the craniofacial skeleton grow, especially transversely. These patients who've always had an open-mouth posture have never fed, they have these extremely narrow palates. You can picture some of these patients, right? Low functioning cerebral palsy, never ate a day in their life. Essentially their maxilla is just caved in, right? In some cases, it's almost like the molars are touching in the back, just because they've never used it, right?
It helps me appreciate that because now it makes sense like when I'm trying to put a scope in their nose, why there's just no nasal airway. There's so much nasal resistance because that craniofacial skeleton just collapsed in on itself. All this is important. I also look a lot at clues that the teeth give me. I can tell, I look to see if they're grinding. Sometimes the parents don't realize what's going on at night. If you see a kid that has just worn facets on their teeth and they're completely flat, you know they're grinding. This might be a little controversial.
[Dr. Gopi Shah]
I was going to ask you, don't all kids grind between three to six years of age or no, is that true?
[Dr. Javan Nation]
No, not necessarily.
[Dr. Gopi Shah]
How common is grinding affiliated with obstructive sleep apnea? Is it usually in, along with other symptoms like snoring or mouth breathing pauses, or can grinding isolated be a concern? Let's go into a little bit because I've always been curious and I've never known how to place that well unless they have their other constellation of obvious sleep disorder breathing symptoms, because I just don't understand it well, I don't think.
[Dr. Javan Nation]
Right. I don't think anybody does. The way I think about it is we don't. You asked the question, how often is it associated? We don't know. I haven't seen a study that's actually looked at that exactly. Because I think there's other things that can lead to grinding. The kid's stressed out or there's anxiety issues, they can certainly grind. My framework for thinking about this is, if they're grinding, they're likely to have high nasal resistance.
There seems to be an association with nasal resistance, which leads to mouth breathing, which can lead to grinding. What that's telling me is the kid's, not breathing well through the nose at night. I don't think it's diagnostic, but it clues me into the fact that there's something going on with their airway.
[Dr. Gopi Shah]
That makes sense.
[Dr. Javan Nation]
Hopefully, we learn more. I know there's some people who put too much emphasis on it and with a lot of these things, especially with myofunctional therapists, I feel like sometimes there's too much certainty on what these signs and symptoms can mean. The honest approach right now is that we just don't know what we're still learning and trying to figure it out as much as we can. I think there's definitely a role and there are important signs to pay attention to, even if we can't use it for diagnostic purposes.
[Dr. Gopi Shah]
You're right and I think that, what our colleagues notice in other fields, that's why you have this amazing multidisciplinary clinic for complex sleep. When I was in Dallas, sometimes we would include our pediatric dentists and some of our rounds and clinics because a lot of our patients would be referred from our dental colleagues a lot of times for their screening before they're doing any sedation in clinic. It's the same where it's like the light bulb moment about the teeth, that's important.
I never noticed it when one of the pediatric dental colleagues was like, "Yes, we should look at this because of this." I'm like, "Oh, okay." Or there's obviously something more than just having to be open to listening and then understanding, thinking about how it may or may not apply and in what scenarios. I think it's a great point.
(3) Dentistry in Complex Cases
[Dr. Javan Nation]
For sure. I've learned a lot from the dentist as well. They pay attention to thumb sucking and they can tell right away when they look at the patient if they've been thumb sucking. I wouldn't have noticed that before. For whatever reason, I feel like we're not as like the way we're trained is to not be as in tune with that. Now I look at a patient and you can tell they're a thumb sucker.
[Dr. Gopi Shah]
Concern of an oral airway. Tell me about the thumb sucking because yes, it does come up and actually had a patient, the mom had come in because her main concern was that. When she pulled, the child was maybe four, sucking their thumb at night and when she would try to take the thumb out, he would start to look really uncomfortable with his breathing. I'm like, is the thumb the oral airway here? I was like, "Let me take a look." We'd looked at the tonsils and this and that and we went more into sleep but that was the initial red flag. Tell me more from your end about that. From what you hear about thumb-sucking.
[Dr. Javan Nation]
Right. As far as the thumb stenting up in the airway, I'm not sure.
[Dr. Gopi Shah]
That's what I just thought about it.
[Dr. Javan Nation]
It could be. I'd love to see a MRI or a sleep endoscopy where the thumb is in the mouth and see how that's changing the airway. What I noticed is when they're thumb suckers, they're pushing their palate up. Just like that, those severe CP kids I talked about who are the end stage of a collapsed maxilla. These kids, you're going to see a narrow maxilla. You're going to see a narrow arch. You'll see the front teeth will start to flare out. You look at the palate, and they're hard palates, it's very high, and it's narrow. Then what's that doing to us is that's narrowing the nasal airway. They're going to have a small nasal airway, increased nasal resistance which will lead to more mouth breathing and decreased airflow.
[Dr. Gopi Shah]
Wow. That makes sense. Do you know if there's a certain length of time or a certain age to which if there is persistent thumb-sucking, they're at risk for those types of airway changes?
[Dr. Javan Nation]
That's a great question. I'm not an expert on that. Generally, what I've heard our dentist say is they should try and get them to stop before age three.
[Dr. Gopi Shah]
Again, I haven't done this. My mentor and former division chief in Dallas, Ron Mitchell, had asked at one point earlier on a couple of years ago was going to some of the pediatric dental sleep conferences as a speaker. There was a lot with cephalometrics because in dentistry, they do a lot of, in the office, X-rays or CAT scans and so there's a lot that they do with measurements. I've had kids come to me with an image from the dentist. A lot of times now it's those quick CTs and there's different measurements. Any role in that? Do you see that in your clinic? Do some of the specialists in your clinic use that? Tell me what you've learned from that side.
[Dr. Javan Nation]
Absolutely. That's something I've appreciated as well. I've built relationships with a lot of our pediatric dentists in the community. One of the things they told me was that when I first started working with them was that they were glad to have this bridge because they felt like they were left out when it came to the care of children snoring. They see these kids regularly. They start when they're under two for sure, one maybe, and they see them twice a year and watch them grow.
They say that they would have concerns and often they would send them to see an ENT and they felt like they weren't being heard or the parents were getting shut down so they're really glad to have that connection. I think what it comes down to is we just have to learn to speak a similar language because sometimes what they're looking for doesn't translate to us and what we're looking for and so we dismiss it.
The way I approach it is they know these kids better than I do. I'm getting a one-time snippet. I'm going to see them once, whereas their pediatric dentist has seen this kid grow up. They're seeing their face change. They're seeing their oral and dental habits and so if a dentist has a concern, I definitely want to see them and hear it out. I've built these relationships so my door is open. If the dentist has any concern, please come on over, let's talk about it. Let's see what's going on. As far as the role of imaging, I love cone beam CTs. I think they're awesome.
There's one particular orthodontist I work with who gets a lot of them. What I appreciate about her is that she's not just trying to get straight teeth, she's trying to develop the child's airway and so if she does expansion, it's not because she needs the maxillary teeth to just be slightly wider than the mandibular. It's because she sees that the nasal airway is smaller or she's going from maximal airway development.
I appreciate that so much because the old way of practicing orthodontics is to go for straight teeth, whatever it takes. If you have to pull teeth, it doesn't matter. Straight teeth is the goal, which leads to poor airways. That's actually what happened to me. I had a whole bunch of teeth pulled and I was younger.
[Dr. Gopi Shah]
Me too.
[Dr. Javan Nation]
It's funny. Now I go see the dentist and they look in my mouth and they're like-- 1980s or early 1990s orthodontics, they're like, "Oh, man." We went to that period where they're just yanking teeth out. Nowadays it's like don't pull teeth. Keep those teeth in, expand everything, expand the craniofacial skeleton, and then the teeth are going to help support that craniofacial skeleton. Otherwise, it's just going to shrink in.
I use those cone beam CTs all the time. It's great. It's basically like a CT. I ask the families to bring it and I can scroll through it and see what's going on and we'll find a lot of other things. We'll find a concha bullosa or big turbs, sometimes some sinus disease. You can assess the lingual tonsils at the same time. I find this is a very, very helpful bridge.
[Dr. Gopi Shah]
Now are there any measurements, certain mins or maxes for anteroposterior distance of soft palate or pharynx with nasal floor? Are there certain measurements or metrics that have been established in terms of airways that's narrow there? Has that come to fruition yet?
[Dr. Javan Nation]
Not yet.
[Dr. Gopi Shah]
Is that what we're thinking might be something in the future?
[Dr. Javan Nation]
Potentially. A lot of these programs, when you get a cone beam CT, you can measure the airway volume and so they have their own little metrics that'll say, "Oh, the volume is low in this area." There needs to be more research done in this area because, as we know, the airways are a dynamic thing. If you're looking at the nasopharyngeal airway volume, is a kid breathing through the nose at the time?
You know this. You put a scope in their nose and they're winding down and so they're soft palate is up and so you get to the nasopharynx and their palate is up and it looks like the adenoid is huge and there's no space there. Then you tell them to take a breath through their nose and the pallet drops down.
[Dr. Gopi Shah]
You're 100% obstructed to 50%.
[Dr. Javan Nation]
Exactly.
[Dr. Javan Nation]
How do you quantify that, when you're getting a cone beam CT? That's one of the reasons we like to do sleep endoscopies. I think there's a role for this. I think there's a lot of good information we can get. We just have to figure out how to do it properly.
(4) Expert Tips for Physical Exams
[Dr. Gopi Shah]
That's interesting. Before we get into sleep studies and imaging, I do want to quickly ask you any special tips, tricks that you have for just a basic physical exam. What are you looking at and what do you check for when this child or this baby comes into your clinic?
[Dr. Javan Nation]
Let's just talk about a typical patient. First thing I'm looking for is watching the patient breathe as I'm getting the history from the family. Thank God. We just got masks off in our clinic and this has been so great because it's so important to actually see what their mouth looks like and see what they look like when they're breathing. From the second they walk in, you can hear them breathing and there's a great sign.
I stole this from Norm Friedman, but he calls it the Darth Vader sign. These are the kids who walk into your clinic and they sound like Darth Vader. Huge clue there. This kid has nasal resistance. Is it allergies? Is this turbs or is his adenoids to be determined? You know this kid is not breathing well through his nose.
[Dr. Gopi Shah]
And they're awake.
[Dr. Javan Nation]
This is when they're awake, exactly. That's your first clue is what does their breathing sound like the second they walk in? I just watch them. As I'm talking to the parents, I'm looking at the patient, I'm watching them breathe. Do they have an open-mouth posture? Are they breathing comfortably through their nose? That type of thing. Then in the exam, I'm looking at the ears, looking in the nose. If they have the Darth Vader sign, I look in their nose and their turbs are wide open. I can't see the adenoids. Sometimes I imagine I can. What do you think? Sometimes I feel like I see a little shine all the way in the very back, but I'm not sure it's the adenoids unless I put a scope in.
[Dr. Gopi Shah]
I know. I think I've had that where I've thought I've seen the adenoids on anterior endoscopy maybe twice in my lifetime of looking at the nose as an otolaryngologist so I don't know. I feel like I need a scope to get a look.
[Dr. Javan Nation]
It's like a mirage back there. It's like I think it's there. Clinically I know it's there because the nose is open and I can hear them breathing so I know the adenoid is big. I don't have to do anything more to really make that diagnosis but every once in a while I look back there and it's like a mirage. It's like, "I think I see it," but I'm like, "I'm maybe just making this up. I don't know."
[Dr. Gopi Shah]
Do you usually scope for an adenoid eval? Because you had mentioned. We see these, "I think the adenoids have grown back." That's especially important, especially for the kids that have mild to moderate sleep apnea. Maybe it's not the severe kid but the AHI is 6 and they already had a TNA normal weight. Do you scope or do you get a lateral neck X-ray? What are your thoughts on that?
[Dr. Javan Nation]
This is a patient and they've already had a TNA, I'm going to scope without question. If they're in a complex sleep clinic, they're going to get a scope because it's really the best way to assess what's going on with the airway. Now, if I'm in general ENT clinic and I'm seeing a three-year-old with mouth breathing, Darth Vader sign, and the turbs aren't big, I'll talk to the family and I'll feel the patient out.
Some of these kids are really shy. You look in their ears and they're uncomfortable with that. You look in their nose and they start crying. I don't usually force a scope on those patients. In many cases, if they're under five, I'll just get a lateral neck X-ray just to confirm. I find that families aren't comfortable going to the operating room. Some are, but most aren't comfortable going to the operating room without something a little bit more diagnostic than just my clinical history seeing they have big adenoids.
[Dr. Gopi Shah]
If the tonsils are big, I don't push it. Obviously, there's something with it to do but if I'm thinking just isolated adenoid, you're right. Sometimes having something more concrete is helpful. You're right. Families and as a parent, it's nice to know what the clinician is using to make that decision and I can understand-- I think what you just said about learning to speak the similar language, whether it's with our partners or subspecialists or cross specialists with our family, that's what all this is about. Sometimes the X-ray might be similar-- You know what I mean? Coming to a common ground in that setting as well.
[Dr. Javan Nation]
For sure. I know a lot of people who take a different view where they say, "I don't want to expose this kid to radiation so I'm going to do the scope." They're not that bad. They're really quick. The other issue you run into with the X-rays is you have to know your X-ray text or you have to do it in a place where you're comfortable because if they don't do it properly, it's useless. In my practice, we have our clinic at our main area at the hospital setting. If I send them for an X-ray there, these X-ray techs have been doing this lateral neck X-ray for years and they're super good at it.
There's a lot of people who say, "Oh, you shouldn't get X-rays or neck X-rays because they're not accurate," but what I've found is that they give me a sense of what's going on, especially if you have a good tech who gets to do the X-ray, you know what's going on.
We have satellite clinics and so if I'm somewhere different and they're going to an outside institution with their X-ray, I'd think about it differently, probably. I'd probably do a scope just because I don't want to get the X-ray and have it be non-diagnostic.
[Dr. Gopi Shah]
Every once in a while, this is not common, but I've had kids with very, very narrow nasopharynx and it's just a big eustachian tube on the X-ray because when you scope them or in the OR put them to sleep, they don't have much adenoid tissue. Every once in a while-- I do think the technique sometimes and the consistency and the history can make a difference. On the physical exam, you mentioned how they are breathing when they walk in. We've talked about posture. We've talked about adenoid evaluation. Any other key things that you're looking for on a physical exam?
[Dr. Javan Nation]
We talked about their teeth. I pay attention to this. I look for crossbites, anterior, posterior crossbites. This is the clue that they have a high arch. A high arch is a hard thing to measure in many cases, especially for an otolaryngologist. We ask each other, "What does that mean they have a high arch? Does it mean they have a crossbite? Or they might not have a crossbite but still have a high arch. Usually, we just say, "It looks high. It doesn't look nice and wide."
What I've found, talking about speaking the same language with people, is if I send them to see an orthodontist and they don't have a crossbite and I send them to see an orthodontist for a high arch and they don't have a crossbite, the orthodontist will generally say, "No, I don't think we should do expansion," unless you have one of those specialty orthodontists who's very focused on the airway. What they'll do is, they'll do the expansion, and then if it really throws off the bite or the occlusion, they can tip the teeth later to fix that occlusion.
If you send them to see an orthodontist who's maybe not as clued in, what they're looking for is that crossbite. They'll say, "You don't have a crossbite so there's no reason to do an expansion." That's what I'm paying attention to. We talked about the grinding and then, obviously, looking at the tonsils.
(5) Sleep Study Considerations
[Dr. Gopi Shah]
In terms of some of the more "objective data" we have, we have sleep studies. Can we talk a little bit about what are the data points that you like to look at starting with just-- How do you go through it? I don't want to-- How do you go through it? What do you look at? What stands out to you? What are the things that you take into consideration?
[Dr. Javan Nation]
A lot of times it depends who the patient is. Let's talk about a seven-year-old that comes to see me in general ENT clinic because they're having a lot of behavioral issues. Parents say, "Sometimes they snore, sometimes they don't. It's not clear. I don't hear any pausing or gasping." The framework I use when I approach these kids is, I like the one, two, three strikes you're out. Are you familiar with this one? No? Okay. This is how I approach it with the family.
First strike I'm looking at is nighttime symptoms. Are they snoring, pausing, gasping, bedwetting, tossing, turning? They check that box, then move on to the daytime symptoms. Are they waking up tired? Are they irritable? Are they disruptive in the classroom? Having a hard time staying on task? Emotional ability, things like that. If that's present, then they check that daytime box.
Then the third box is enlarged tonsils and/or adenoids. If they match all three of these and they don't have any other high-risk symptoms, you don't actually really need to get a sleep study. Often, they'll check maybe two out of three boxes. They'll maybe have some snoring but daytime symptoms aren't so bad or they'll have bad daytime symptoms and then nighttime symptoms aren't so bad. In those patients, I'll get a sleep study.
Sometimes, I'm looking for different things. One of the interesting things about a sleep study is that you can't just pay attention to the AHI, or the abstract of AHI, and say, "Oh, this kid, the OHI is 2.5. It's not that bad, you're fine." Because what we actually find is, a lot of these really high-functioning kids, they're actually more symptomatic when they have mild sleep apnea than some of the kids that have severe sleep apnea.
Because what we know is that a lot of kids, especially these high-functioning kids with mild sleep apnea are more symptomatic than other patients who have severe sleep apnea. These are kids that are going to have a lot of daytime symptoms. You can't just say, "Oh, your sleep apnea is not that bad. It's not a big deal," because it's a syndrome. It's the way these nighttime events are affecting you in the daytime.
When I think about why we care about sleep apnea for kids, it's not so much that it's going to lead to congestive heart failure and whatnot, as it might, we just don't know, we don't have those longitudinal studies, but really what we're looking at is, we're looking at how this issue is affecting their development and their ability to learn and keep up with other kids and develop. Those really symptomatic ones, a lot of times won't have high AHIs, but intervening and doing something for them can make a huge difference.
For that particular patient, I'm looking at, is there any sleep apnea or not? Because if there's just no sleep apnea, then I'm not sure that-- If they're not even snoring during the sleep study, I'm not sure that addressing that is the right thing for the patient, and I think we need to look elsewhere. If we're looking for complex patients, yes. If we're looking at our Down Syndrome patient who's in our complex sleep clinic who has a very high AHI of 20, what I care more about is the gas exchange, especially if we're going to consider intervening for this patient.
As an ENT, probably the most common reason we get a sleep study for patients with comorbidities is to assess the severity because we want to see, is this a patient that I have to be really concerned about after surgery. You know from the history the kid's going to have sleep apnea. An obese kid with 4-plus tonsils, why do we get a sleep study? It's not because we're questioning if they need the surgery or not, we just want to know how bad it is.
This is one of those interesting areas too. I'd like to get your take on it as, at what point do you put them in the ICU? Nobody knows the answer to that. I know some places have a very low threshold to put them in the ICU. We're still trying to figure ours out. We actually just came with some criteria in the last couple of weeks as a group for who should go to the ICU.
I did a study, recently published in IGPL looking at predictors of overnight events. What was really interesting about that was, it's not the AHI that was a predictor. A lot of kids would have an AHI of 100 and have no events overnight, what we found were the predictors was the gas exchange and specifically the oxygen. We found that having 0.5% of the night below 90% for their oxygen was a predictor of an overnight airway event as well as having a nadir below 80%, which makes sense.
Because if you think about these patients, some of these patients have a very low threshold of arousal, and so they're going to have a small little obstructive event, and they're going to wake up right away. That's not the kid that's going to have a respiratory complication after surgery. They're protecting their airway just fine. In fact, they're protecting their airway so well that their brain can't rest, and so they're having a lot of daytime behavioral issues.
It's the kid who's not protecting the airway who has a very high threshold arousal. Those are the ones who are going to have respiratory complications that are dangerous. Those are the kids that their brains can allow them to get down into the 80s or spend a lot of time below 90%. For these patients, that's what I'm looking at, it's the gas exchange.
[Dr. Gopi Shah]
I think that's a great point. Like you said, I don't have a specific AHi cut-off because you're right, some of the kids that will come in with a sleep study of an AHI of 50 or 60 an hour and we put them in ICU do fine. They're not the ones that if they're eight years old and whatnot, they're not the ones that are always having trouble. I think you're right, it's looking at all the things that come into play, alternators inputting, and how long.
This was actually more when the anesthesiologist, I remember like, "Look at their Co2, look how much they're holding on. They're not ventilating. They're holding onto that CO2." I started paying attention more to not just how high it gets, but how long do they hold on to that. A lot of how induction goes and how extubation goes will clue you in and how, a lot of times you have to reserve that ICU bed pre-op and that's probably the better way to do it.
You have to start thinking about it because in terms of your induction, extubation, you're part of that care and talking the anesthesia and everybody being on the same page. Age, and then, obviously, we've talked about comorbidities, which these kids, whether it's poor tone hypotonia, young age, craniofacial, difficult airway, all that comes into play. You're right, it's not just AHI of 50 an hour.
Those are going to make you think but there's a lot that has to come into play as well so we don't miss an AHI of 20 that then really has a peak CO2 in the 60s for however long or 75 whatever, uncertain. Are you looking at the graphs or do you just look at the typed-out report?
[Dr. Javan Nation]
I go through the graph. For the most part, I work really close with their pulmonologist and so we're on the same page. What they put in the report is mostly what I care about but I do look through the graph. The main reason is, you get a better sense of how that night went. A really good study, you can see the patient fall asleep, and you're going to see them go from mild, moderate, to deep sleep, and then, they're going to have their first REM episode around midnight. Then, it's going to happen again, and the REM episode will happen again, and they get longer and longer and longer.
The REM episodes increase into the morning hours and they get longer. I can see how that sleep study went. Was it a good night's sleep? If this is a patient where they're in that mild range, it's an AHI of 2.5. Did we underestimate what's going on? Did they get enough REM sleep?
Looking at the graph, you can quickly see how much time they were in deep sleep, how much REM they had, and give you a good sense. Is this a kid that was in the sleep lab, he was uncomfortable, he never really could get comfortable, he just couldn't fall asleep, or dad was laying next to him snoring? Some other circumstance affected the quality of the sleep study and looking at that graph can clue you into what's going on.
We, as otolaryngologists, don't watch the videos like the pulmonary doctors do. We talk to these guys. They look at the video. They're looking at the kid moving back and forth, so they're getting that information, which we don't have, but we can get similar information looking at that graph.
(6) Weight as a Risk Factor
[Dr. Gopi Shah]
Do you look at, in terms of other data you might have in front of you at the time of that clinic visit, do you look at weight, BMI, or growth over time? What about some of that information? Does that come into any of your decision-making?
[Dr. Javan Nation]
For sure. Yes. If this is a patient who comes in with sleep-disordered breathing with big tonsils and we're thinking about doing surgery, I, for sure, look at the weight. The BMI for each percentile is what I care about. I'm going to always get a sleep study for these patients. I know it's not realistic everywhere for places that don't have that resource. We've grown as an institution a lot where we went from like having two beds per night to like 14.
It's really nice. You get a lot of sleep studies. We know what's going on with these patients beforehand, but for me, it's a safety thing. I recently had a patient sent to me that had Down Syndrome and was two-year-old and somebody else had ordered the sleep study but it took a little bit longer than he wanted to get it.
It was mentioned by another otolaryngologist to say, "Hey, what's the point of waiting for the sleep study?" The parents hear this kid obstructing at night. He's got huge tonsils. He's got Down Syndrome. There's no question he's got sleep apnea. What's the point? Maybe just admit him afterwards if you don't have that information.
Fortunately, we did wait a little bit longer to get that sleep study. I'm so glad we did because the AHI came out at 115. It's very, very severe. What's the difference? I'm going to put that kid in the ICU overnight versus putting him on the floor where he can have a one-on-one nurse who's going to be at his bedside versus a nurse who's sharing him with five to seven other patients. I know it can be inconvenient and, in many places, it can be a hard resource to get access to, but in my opinion, I think it's extremely important.
[Dr. Gopi Shah]
Yes. Definitely. We have a history of Down Syndrome or morbid obesity or anything, and even especially when they all come together, each little thing is just going to exponentially make that sleep apnea worse and worse and that perioperative management more and more challenging.
You're right. The sleep apnea didn't happen overnight, so taking the extra month or two that it might take to get the data you need so that it's set up right. The care, pre-op, post-op, peri-op, everybody's on the same page with where this kid is at, I think, is very important. I've had similar situations, frustrated parents, but for some of those kids were if that gut feeling doesn't feel right and that's that clinical art of medicine. I'm not saying everything's anecdotal practice, but you start developing that gut feeling, I think, go with that.
[Dr. Javan Nation]
Yes. For sure.
[Dr. Gopi Shah]
Yes. Things happen easily in terms of when I started looking-- so I look at BMI percentile for age. I started looking at weight because one of my fellowship director, Romaine Johnson, looked at weight gain velocity in some of these kids, and found that kids that had rapid weight gain, for example, over a year or two, versus kids that were already "heavyset" but stayed in that same chart. The kids that had the greater change in weight had higher sleep apnea on their PSGs.
Sometimes, I'll look at that, and on the flip side, I've found some kids, and this was a family, a child, a teenager, a child with Down Syndrome, who actually lost 7 to 10 pounds. We're talking about all kinds of secondary sleep surgeries at the time and it cut it down. Then, it's like, "Well, okay. Let's reevaluate and see." You know what I mean? Do you look at any of those trends?
[Dr. Javan Nation]
I don't. I've never heard of that weight gain velocity before. That's really interesting. I wonder why. I wonder if it has to do with the tone or with their natural tone being set at a certain area and all that.
[Dr. Gopi Shah]
Yes. Then, all of a sudden, you have all that weight on top. Yes. Maybe it's what you're used to. I have seen the flip side with weight loss. It's not everybody that can do that, but if that-- and it's not a ton. Over time, it can be a couple of pounds. It doesn't have to be like, "Oh, I don't know if we're going to lose the 20 whatever." It's even simple, just a little bit can go a long way. Is weight management, nutrition, or any of that part of the clinic? Those are hard clinics to get into.
[Dr. Javan Nation]
Absolutely. Yes. It's not. We don't have a nutritionist. We don't have a bariatric surgeon. Those are dreams to maybe one day have that. I would absolutely love that. I've talked about it with the hospital administration. We're just not there yet.
There are places that have bariatric surgeons, but I got to say one of the things I'm excited about is for all these patients, we have them see the endocrinologist if they're obese. We'll loop in nutrition, but as far as weight management, it's usually disappointing. You tell them, you advise them on how to eat better, and spend more time outside, and cut out the snacks, and these types of things. It's just hard.
It's hard for these kids to lose weight. Sitting around for six months or a year and seeing if people lose weight, I generally find them disappointed, but I got to say, the thing I'm excited about is our endocrinologists have recently started giving these kids Ozempic, the weight loss medication.
This is brand new for some of these really obese kids that have severe sleep apnea who use CPAP and do okay. They don't have great complaints, but maybe they do okay. We're starting some of these kids on Ozempic. I'm actually very excited to see how this changes our management options for these patients.
[Dr. Gopi Shah]
That's cool because even, again, a few pounds might make a difference in terms of setting and use. That's pretty exciting.
[Dr. Javan Nation]
Yes. For sure.
(7) Sleep Nasendoscopy (SNE) and Drug Induced Sleep Endoscopy (DICE)
[Dr. Gopi Shah]
Tell me a little bit about the role of DISE or SNE in your practice. When do you get them? Which one do you like? Do you decide?
[Dr. Javan Nation]
Yes. I have done SNEs. It's not a main part of my practice. I usually use it if I'm really stuck or if there's some question about how the tongue base is affecting the palate. My more go-to is using sleep endoscopy. I use it generally in two different situations. I'll do it for all Down Syndrome patients prior to TNA. There's a DISE consensus panel that came out a couple of years ago. They actually agreed with that, which is interesting because there's some people on the panel who agreed it's useful, some people said it's not useful.
I find it to be useful, especially for Down Syndrome patients because what I've found doing this for these patients is that the airway collapse pattern is different. I did a two-year-old yesterday with Down Syndrome who had huge tonsils. We did the sleep endoscopy and had big adenoids, and so he was collapsing behind the soft palate, and you could see his tonsils were huge. They had this lateral collapse completely obstructing his airway.
It's nice to know because sometimes, what I'll do is I'll do a sleep endoscopy for these patients, and they might have two or three plus tonsils, but on the sleep endoscopy, the tonsils aren't moving much. Really, what I'm seeing is I'm seeing the tongue base obstruct. That's the hardest situation for me to be in because two questions arise.
First one is should I take out their tonsils? I can see on the sleep endoscopy that the tonsils aren't obstructing when they're sleeping, so should I take them out? If I don't take them out, what should I do? I feel like right now we're in an area where the first care, first line of therapy for kids with TNAs, is to take out their tonsils and adenoids for a few reasons.
One, we don't know how the airway reshapes after you've taken the tonsils out. Even if I'm not getting an endoscopy, I'm looking and I still see it's mostly tongue base. If I take their tonsils out, we might get that lateral pharyngeal wall scarring that's going to reshape their airway that might change it, and still, ultimately, help them. I'm uncomfortable because it's not a fun surgery to go through. They have 10 days of sore throat. They're uncomfortable. There's a risk of bleeding. Having that extra information that I-- When I see it's a tonsil, I feel great about it, but when it's not, it's uncomfortable.
This is data I'm currently collecting and I'm following these patients to see how do these patients who didn't have tonsil collapse on the initial sleep endoscopy do with their postoperative sleep study? I think in the future, for a lot of these Down's patients, we reduced sleep endoscopy and we find that, I think, I'm guessing, that we might do something different and start off with TNA. We're just not there yet.
Yes. I do it for all those patients. For a lot of patients that come through the complex sleep clinic, I don't routinely do it. People have different approaches to this. Some people see the sleep endoscopy as just as diagnostic as getting a sleep study. You get a sleep study, you should get a sleep endoscopy for all these patients, and then, use that information to make a decision for what to do next.
That's not my approach. The reason why is because when you're going to the operating room, you're putting them to sleep, there's some associated risk, but really, for my decision making, if this kid can tolerate CPAP, it doesn't really matter what the airway looks like. Does it make any difference if it's the palate or the lateral pharyngeal walls? It doesn't. CPAP is going to blow it all open either way.
Our approach is to always start with CPAP. If CPAP is not working, we're going to figure out ways we can maybe get it to work because we always tell families it's safe, and it works great, just the downside is you have to use it every day. For a lot of these kids, we talked about nasal resistance before. We'll find they have small noses. They have narrow palates. We'll get them plugged in with the orthodontist and do a palate expansion, and often, do a turbinate reduction, or maybe like a revision adenoid with the goal telling the family that, in many cases, it's not going to fix the sleep apnea.
I can tell you about a patient I did yesterday, actually. He's a 12-year-old with autism, morbidly obese. He's over 200 pounds. He's 12. He has very severe sleep apnea. AHI 30 plus. We saw him in clinic and he's just not tolerating his CPAP. He's got autism. It makes sense. Even non-special needs adults, compliance is still 50%.
You can imagine for this kid. He hates it. He doesn't do well with it, but one of the reasons is that the pressures are really high. You look in this kid's nose and he's got some underlying allergies. He's got huge turbinates, small nasal airway, and he didn't have any-- He was status post-TNA. He didn't have any adenoid regrowth, but he had a huge tori. You look at his nasopharynx and the whole coin is obstructed by these huge tori. It's really interesting. I want to get your opinion on this.
[Dr. Gopi Shah]
I've seen that. Yes. Tell me about that. What do you do for that?
[Dr. Javan Nation]
As long as you're just addressing the posterior cushion, you can shrink it down. I've only seen one study on it. I think it's a Korean study where they talked about addressing the torus for sleep apnea, and that was their approach. When we're doing eustachian tube dilation, a lot of times, we'll shrink down that posterior cushion.
That's what I did for this kid. I just used the suction coterie and just put it on the posterior cushion, keeping it away from the opening of the eustachian tube, and shrunk it down, and it worked great. I did a turbinate reduction, shrunk down the tori, and it got to the point where when I was done, I could put the scope in, and I could actually see his nasal pharynx instead of just these big bulky torus obstructing his choanae.
[Dr. Gopi Shah]
Would you do a DICE on a kid like that?
[Dr. Javan Nation]
Yes. I did a DICE.
[Dr. Gopi Shah]
That would make sense.
[Dr. Javan Nation]
Right. For any of these patients who are coming from the complex sleep clinic, if I go to the OR, I'm going to do a DICE just because it gives you more information.
[Dr. Gopi Shah]
You're not taking them especially just for the DICE to the OR? I know you kind of touched on that. Some people would say, "No. We're going to go to the OR. Get a DICE. That's part of my information." Usually, they're going to the OR for something else.
[Dr. Javan Nation]
Usually. It's not routine.
[Dr. Gopi Shah]
That's how I usually do it, too. Yes. That's how I usually would do it, too, and it's because of that extra anesthesia. That being said, the information-- there is more, potentially other information. You know what I mean?
[Dr. Javan Nation]
For sure. Yes. That's our approach. If we go to the OR for any reason, I'm going to do a DICE on these patients. It just gives us more information. When I did a DICE on this patient, the area of obstruction was his torus. You could actually see those tori coming together and obstructing his nasopharynx. Yes. It's interesting because he had so much nasal resistance that downstream in his oropharynx, that was all collapsing as well because he was just working so hard to try and pull air through his nose.
Hopefully, I got his nose open. We were very blunt with the family that, "This procedure is not going to fix your sleep apnea. You're not going to wake up and it's gone, but our hope is that we can make it more comfortable for you to wear your CPAP mask." If we could potentially get him just a nasal airway mask, kids tend to do better with those. If we can get that nasal resistance down-- We haven't proved this. This is our hypothesis, so it's still in the process of collecting data, but our hypothesis is if we can decrease nasal resistance, we can make it more comfortable to wear the mask and increase compliance.
[Dr. Gopi Shah]
No. It makes sense. Two quick questions about the DICE. You'll do it before and after the procedure that you're addressing, whether it's turbinate reduction, you're going to do it like before the turbinate reduction, and after turbinate reduction, or TNA before the TNA, and after the TNA? Is it just your kids with severe or from the complex sleep clinic?
[Dr. Javan Nation]
What do you mean after? Do you mean during the same anesthetic event?
[Dr. Gopi Shah]
Yes. Let's say the child has an AHI. It's a five-year-old. Let's say otherwise healthy. Let's say slightly overweight for some reason. It has an AHI of 30 and 2, 3+ tonsils. You plan for TNA. Do you do a DICE for a child like that or who do you decide needs a DICE? If you're going to do it, do you have a pre-procedure scope, and then, whatever you're doing at the time of that surgery, and then a post-procedure scope or a DICE?
[Dr. Javan Nation]
Yes. I used to do a DICE for all patients who are high-risk for postoperative sleep apnea. That meant I was doing a lot of obese patients. I stopped doing that just because I found it was too high-risk for these patients, and it wasn't changing what I did.
[Dr. Gopi Shah]
That induction for those kids, it can get south fast.
[Dr. Javan Nation]
For sure.
[Dr. Gopi Shah]
They're high risk. It depends on how comfortable and how the patient also tolerates anesthesia.
[Dr. Javan Nation]
Right. These obese patients, they're not down to the patient. They don't have the complexity to the collapse that they do. Yes. There's a few times I'd have this 250-pound, 300-pound patient on the table trying to do a DICE, and the anesthesiologist is working really hard to maintain that airway. I ask myself, "Is this a risk? Is it worth it?" I came to the conclusion I don't think so for these patients just because it's not changing my management.
The Down Syndrome patients, it's not necessarily changing my management, but the instance of these kids having residual sleep apnea is so high, and it can be so varied. Is it tongue-based? Is it a floppy epiglottis? I do a bronchoscopy for all those patients as well with Down Syndrome.
They're really the ones I'll do before the TNA, just the patients with Down Syndrome, I'll do a DICE prior to the TNA, but same anesthetic event. I can talk about my techniques. It's been kind of funny. I feel like it's always evolving. I'm really happy with my current cocktail right now.
I used to use Dr. Koltai's cocktail where you would give one to two mics of dexmedetomidine and ketamine. Then, you just wait for 10 minutes, and then, start your DICE. That was fine, but some of the issues I was having with the ketamine was there were a lot of dysphoric issues. They'd wake up dysphoric. It would take them a long time to wake up as well.
Norman Friedman, for example, uses dex only. I was noticing that if it was just dex, I was having a hard time getting him to that state quickly. We actually increased how fast we give it. What we're doing currently is we're doing one to two mics per kilogram of dex over five minutes. We're pushing it really quickly. Then, I don't start the sleep endoscopy until five minutes later.
It's been working out really, really well. The patients are waking up quicker. We're not having as many of those dysphoria issues. Yes. It gets them into that nice state where they're snoring and they're just deep enough that you can put a scope in their nose without them waking up and swatting it out, but you're not getting that artificial collapse as well.
[Dr. Gopi Shah]
Is that something you came up with your anesthesia colleagues?
[Dr. Javan Nation]
Exactly.
[Dr. Gopi Shah]
Is it actually the same anesthesia provider that you work with for these patients?
[Dr. Javan Nation]
There's some that are more into it than others. With those ones, we always brainstorm and have this conversation, like, "Well, let's try this. Let's try that." Then, the other ones will just be like, "Oh, what's your cocktail? How are you doing it these days?"
[Dr. Gopi Shah]
Yes. That's right.
[Dr. Javan Nation]
Right? They always ask me that every time because they know I'm always changing it. That's where we're at now. I'm pretty happy with the one to two mics per kilogram of dex over five minutes.
(8) Defining CPAP Success
[Dr. Gopi Shah]
Then you touched on CPAP. I think I like the idea of-- because it's how we used to practice in Dallas as well, is the trial of a good CPAP trial. My question for you is what defines a good trial of CPAP and what is considered success? Is it wearing 50% of the night for 5 days over 4 months successful, is there a certain criteria that you guys have?
[Dr. Javan Nation]
Right. That's the technical criteria, 50% to 80% of the night for 5 nights a week, but when you really sit down, and you talk to these families, it goes beyond that. For a lot of these families, they might be doing that. The kid might be a seven-year-old kid with Down Syndrome, and we pull up the data, and we see, "Oh, he's doing a good job wearing a CPAP," but then, you actually sit down, and you talk to the family, and mom will tell you, "She hasn't slept in seven months." She's waking up three or four times a night because she hears a mask leak, and she has to go in the room, and put it back on.
Mom's exhausted. The family is affected by what's going on. Is that realistic? Maybe technically it's working, but is that really working for the family? I'd say, "No." You really have to get into this, like how is this CPAP affecting the family? Sometimes, some of these Down's kids absolutely love it, so they won't go to bed until they have their CPAP on, and they'll remind the parents to put it on.
If they wake up and they feel a mask leak, they adjust it themselves, and they're just rock stars. We don't have to worry about them. They're going to do great. There's other ones who-- especially if they have autism, they just don't accept it, and you have these great moms who will give everything they have to keep the CPAP on, but mom's not doing well, or dad's not doing well. In a situation like that, we might be more prone to try some other option besides CPAP.
(9) Secondary Surgical Options and Approaches
[Dr. Gopi Shah]
Tell me about other options and your decision-making when it comes to secondary surgery.
[Dr. Javan Nation]
There's your typical approaches. I think a lot about the nose. I'm pretty quick to almost always do a turbinate reduction if there's any nasal obstruction as well. If you see any residual adenoid tissue, it's an easy decision to go ahead and remove it. There's lots of upside and very little downside.
As far as addressing the palette in kids I'm careful. I do it from time to time, but when you do a UPPP, I tell the family, "They're probably going to be in the hospital for a week," because it's this picture like your Down Syndrome kid with a small nasopharynx, with a small oral cavity, with this long floppy palette. You can do a UPPP and it's going to give him that retro-velar space he needs, but they're so miserable [chuckles] that he's not going to feed well.
It's a lot to put him through. I occasionally do it, but only if I really, really feel like it's absolutely necessary. What we probably do more of is lingual tonsillectomies. These are kids-- even in the office, you'll do an awake scope and you'll see these huge lingual tonsils that completely fill up the vallecula. They're coming up over the top of the epiglottis, in many cases, pushing the epiglottis posteriorly, even when they're awake. Then, you take these kids to the OR for sleep endoscopy and you almost can't even see the epiglottis just because everything's falling back.
What's challenging for these kids is you can do a lingual tonsillectomy, but often, it's not just the tonsil that's the issue. It's also the muscle tone. I've done a lot of lingual tonsils, done a lot of tongue-based reductions. I've done a lot of epiglottopexies where, at the end of the procedure, you're like, "This is awesome. There was no space here before. Now, it's wide open." You're really looking forward to getting that postoperative sleep study and you get it and you're disappointed. The kid still has an AHI of 10+ and they still need a CPAP. That's disappointing for them to go through that whole thing and still need CPAP regardless.
Really, what it comes down to is the part we can't fix is the muscle tone, or at least we couldn't. That's what's exciting about Hypoglossal Nerve Stimulation is now we have a way of actually addressing that muscle tone.
I think I've become more conservative with these procedures just because I don't think it's a magic bullet. I think TNA is a magic bullet. It's the most routine thing we do. It's considered our "bread and butter" but it works incredibly well for so many reasons.
We talked about is TNA the right thing to do for all kids with sleep apnea to be determined. It's amazing how well it works. These other procedures, we're still learning. We're still in our infancy of secondary pediatric sleep surgery, and figuring out what works for these kids.
Yes. Those are your options. When I think about the airway, I think about three things. I think of the triangle of what does their skeletal structure look like. That's supported a lot by their teeth. They have poor occlusion. They're not eating. They're not going to have that normal developed skeletal structure that's going to suspend the soft tissue open.
I think about the soft tissue. Is there extra soft tissue? Do they have macroglossia? Do they have enlarged lingual tonsils, adenoids? Is there soft tissue in the way? Then, the third part of that triangle for it all to work is the tone. What's the tone that they're providing to that airway at night to keep it open?
[Dr. Gopi Shah]
Yes. You're right. It's going to be whether it's your neuro kits, CP kits. I've seen skinny, no diagnosed past medical history kids with severe OSA that persists and it's got to be something with that. The tone plays a big role. Tell me a little bit about your experience with the hypoglossal nerve stimulator.
[Dr. Javan Nation]
I'm just getting started, actually. It took me a while to get it approved at my hospital, but I finally did, and I did my first implant.
[Dr. Gopi Shah]
Congratulations. That’s a big deal.
[Dr. Javan Nation]
Yes. Thank you.
[Dr. Gopi Shah]
Is it under FDA, like a site for study? Tell me. Is that where we are with this in pediatrics?
[Dr. Javan Nation]
They actually just got FDA approval for children with Down Syndrome 13 plus about a month ago.
[Dr. Gopi Shah]
That's amazing.
[Dr. Javan Nation]
This is brand new news. It just came out. One of the interesting things about that is, as far as I know, I might be wrong, but when I was talking to the rep and I was looking at the announcement, I didn't see that there was a weight criterion on there because a lot of these Down Syndrome patients are obese, maybe not morbidly, but they're big. That's part of the syndrome is their basal metabolic rate is slower and they tend to be heavy.
A lot of them wouldn't qualify if you had this strict of guidelines. For adults, let's say, a BMI of 32. If we say for pediatrics, BMI for age percentile of 95 or less, a lot of them wouldn't fit into that. What's exciting about this is that that's not part of it. I think a lot of these patients will be candidates and I think it's going to make a huge difference for these patients. All the studies coming out are showing that it makes a big difference for them.
[Dr. Gopi Shah]
Is there an HI range? Is there an HI too high or an HI--? Is it like you're moderate to an HI of 30? Who are the kids that you could offer this to?
[Dr. Javan Nation]
I don't know. I need to double-check that. For adults, they'd say an HI of 15 plus. For the kids, I didn't see any HI criteria there. I think most of us probably wouldn't use it unless it's at least severe, maybe moderate if they're very symptomatic. I don't know the answer to that.
(10) Advancements in Care for Complex Pediatric Cases
[Dr. Gopi Shah]
In terms of bringing this to your practice, have you been able to train with your adult colleagues on the actual surgical procedure? Have you had the opportunity to travel and see other surgeons? This is, it's so exciting. It's something that you've been a part of in terms of building this practice for the last 10 years. Now, you have a new surgical tool, a new skill set set to develop mid-career. Tell me about that experience developing something new and different.
[Dr. Javan Nation]
Yes. Inspire, the company does a great job of teaching. Really, from the beginning, they've been very careful about making sure surgeons don't get complications. They have a great educational component built into their training. They have these guys that go around the country and they'll sit down with you, they'll have you come, and do the training course. It's four hours of didactics, sitting in the classroom, talking about dissecting out the hypoglossal nerve.
What's interesting is, we see the hypoglossal nerve, not all the time in head and neck surgery. It's not what we necessarily look for. We look for 11 or 7. We'd see it but we don't necessarily look for it or dissect it out, but in this situation, you're looking for it, and you're dissecting it out. You're actually looking distally on the nerve for the protractors and the retractors.
What you're trying to do is you're just trying to cuff the nerve, the portion of the nerve that stimulates the protractor muscles that pushes the tongue forward, leaving the retractors out. You don't want this to like the tongue to go back. That's interesting. We never learned that before. That's brand new.
They do a great job teaching you how to identify that. They do a great job showing you how to get down to 12, how to get the mylohyoid out of the way, and give yourself that good visualization and approach, how to dissect it out, how to stimulate it. Here, I'd say as an otolaryngologist, it feels very much within our wheelhouse. We're comfortable in the neck. We're comfortable in that area.
The part that made me probably most nervous was working in the chest. The other part of this is you have to put the lead into the chest. You make an incision over the second intercostal space, dissect down to it, and then, you're actually putting the sensing probe between the external and internal intercostal muscles. We do pec flaps and things like that, at least within the residency. As a pediatric otolaryngologist, I don't do peck flaps anymore.
[Dr. Gopi Shah]
I haven't done a pec flap in about 15 years.
[Dr. Javan Nation]
We've been in the area, but it's not an area that we're super comfortable being. At least I have to say I wasn't super comfortable being there. They do a great job. They have a cadaver dissection course. You go in there and you practice in the cadavers and they have-- the reps show to your first handful of surgeries to really walk you through and be there for you. It's great. Yes.
Where I started off in my hospital was I wasn't able to do it on kids under 18 yet just because it didn't have FDA approval. We have a sizable amount of patients who are special needs, who are still part of our practice. When you're at Dallas, you know that there's these CP kids and special needs kids who just don't really transition well to the adult world. We just keep them with us. We're comfortable with them, they're comfortable with us. We're built for that type of thing in our clinics. We'd have these 19, 20 plus patients.
My first patient was a patient that had cerebral palsy, pretty-high functioning with very severe sleep apnea. She just absolutely couldn't tolerate her CPAP. She was our first and she was very small. She had very small muscles, dissecting through her pec major was two spreads [chuckles] and you're already through it, but it went great. Yes. We just got her activated a couple of weeks ago. Things to think about is I haven't seen anything published on other people and planning these types of patients yet.
One of the challenges is getting her habituated to the stimulation. So far, she's doing great, but it's something we thought about. It's like this is already a patient that has CP, has sleeping issues, how much stimulation will it take before she's going to awake? We thought about doing a slower ramp instead of just doing a 30-day ramp, doing a slower ramp where we just slowly, slowly increase how fast we're turning up the stimulation. These are challenges that we have to think about. We're excited to see how our outcomes are going to be with these patients.
[Dr. Gopi Shah]
That's really exciting. One group of kids that we haven't talked about. We didn't have a multidisciplinary sleep clinic, but we had a round, a quarterly round, that were pulmonologists, our PDNTs would come together, and discuss some of our difficult patients.
Once a year, we'd have a child with the question-- Does this child need a tracheostomy? Tell me about your experience with tracheostomy for the indication of obstructive sleep apnea. It's not common, but there are those kids out there. I think we're still probably getting closer to where other technologies may be helpful to avoid some of those, but some of these are tiny infants, under two, or really medically-complex kids where it's hard to know what's going to help them. Tell me about your experience with that.
[Dr. Javan Nation]
Yes. I'd say probably the most common ones, if they're infants, where that question comes up, would be the children with Pierre Robin. What literature has shown for those patients is if they have other comorbidities, or they're part of a syndrome, then, a distraction won't be as helpful for kids that have bilateral choanal atresia. If it's part of a syndrome and they have bilateral choanal atresia, we don't always get a sleep study for these patients, but they're obviously obstructing. They're obligate nasal breathers. Sometimes, you want to be the hero and go in there and do a choanal atresia repair for that.
For a lot of these patients, I don't think that's the right thing to do. If there's lots of comorbidities, they're not doing well. I think a trach is probably the right answer for them, the best way to help them. Work gets really complicated and there's no set criteria between institutions, maybe like a child with cerebral palsy.
These kids are interesting because you look at them, and while they're awake, they essentially look like they're sleeping as far as their airway tone goes. You see them obstructing in front of you, and you'll do an awake laryngoscopy, and watching their airway looks very much like what a sleep endoscopy looks like.
I've actually done that where I've done awake endoscopy and I've done a sleep endoscopy, and it doesn't really change. For a lot of these patients, I don't feel like I need to do a sleep endoscopy because I'm getting that information while they're awake.
You said, "Are there criteria?" There are no set criteria. This is something that we always talk about with other otolaryngologists, like, "When do you trach this patient? When is this patient sent to you for a trach? How do you make the decision to do it or not?" It's a big decision to make when you do a trach or not.
[Dr. Gopi Shah]
I find it really difficult.
[Dr. Javan Nation]
Yes.
[Dr. Javan Nation]
We just had a patient with CP that came through our complex sleep clinic and that came up, like, "Should we do a trach or not?" Our plan was to do a sleep endoscopy and a TNA, but in the meantime, before we actually had surgery, she got admitted to the hospital because she was having episodes of cyanosis.
She gets admitted to the hospital and mom comes in and mom says, "I've talked to other people who say trach is not a big deal. I think I'd actually like to do a trach." He said, "Well, trach works great. A trach will fix this problem, period, but, is it time yet?"
While she was in the hospital, we actually got her fit with a BiPAP that she was tolerating. I spoke to the pulmonologist, and I was like, "Should we consider a trach?" The point that they brought up that I really appreciated was that she didn't have the social support for a trach.
For a trach, you need to have two full-time providers that are available. This particular mom was a single mom, and grandma lived across the border in Tijuana. For this child to get a trach, you're going to basically take her out of her home, and she's going to end up in our long-term care facility.
Mom might say, "Oh, yes. Trach's not a big deal." That's what we tell families, too. It's reversible. In many cases, not always. It's not the end of the world, but it is a big decision. In many cases, if you don't have that proper care, they might not be able to go home with you. There's all these things to consider. For me, I personally really appreciate having all the different providers on-board to make the decision before moving forward.
[Dr. Gopi Shah]
No. I think that's a great point. It's a good example. As we wrap things up, any final pearls or words of wisdom to leave our audience with, with your practice?
[Dr. Javan Nation]
Yes. For sure. I think taking care of these patients is a practice in humility. There's no magic pill or wand that fixes this issue. We're still learning so much as I hope you could pick up from the way I talked about it. There's so many things we don't know.
For any trainees who are interested, I encourage you to do pediatric sleep apnea because we need your minds, we need your time and ability to come in and tackle some of these complex issues, and help us move the ball forward, and figure out the best way to take care of these patients.
[Dr. Gopi Shah]
For our listeners, I should have brought this up in the intro, but to learn more about anything pediatric, check out the SENTAC, Society of ENT for Children. Javan has some podcast episodes. Hopefully, we can share some of those links as well when this episode gets released. If our audience or listeners have any questions for you, are you on any other social media, or how do they reach out to you?
[Dr. Javan Nation]
Yes. I'm on Twitter @javannationmd. As well as Facebook at Javan Nation.
[Dr. Gopi Shah]
Awesome. All right. I think that's a wrap.
Podcast Contributors
Dr. Javan Nation
Dr. Javan Nation is a pediatric otolaryngologist with Rady's Children Hospital in San Diego, California.
Dr. Gopi Shah
Dr. Gopi Shah is a practicing ENT at UT Southwestern Medical Center in Dallas, TX.
Cite This Podcast
BackTable, LLC (Producer). (2023, July 11). Ep. 119 – Children with Complex Sleep Apnea [Audio podcast]. Retrieved from https://www.backtable.com
Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.
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