Pediatric Sleep Apnea Treatment: Managing Complex Cases

[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.

[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? 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.