Episode Transcript
[00:00:04] Speaker A: Hello and welcome to this edition of Cook Children's Doctalk. Today we're talking about exercise induced laryngeal obstruction, or Eilo, and we're joined by doctor John Robertson and his team. So let's start with the introductions.
In addition to his general pediatric pulmonology work, Doctor Robertson has a special interest in exercise triggered breathing problems in children, teens and young adults, and has been treating children with a continuous laryngoscopic during exercise, also known as CLE test, that is helping young athletes with exercise induced laryngeal obstruction breathe easier and safely return to their favorite sports.
He and his team have been performing CLE during exercise to further investigate the causes of these exercise induced respiratory symptoms since 2019, including the first CLE ever performed on a pediatric patient in Texas on February 8, 2022. He has received a 2024 Endowed Tear award from the Cook Children's Health foundation to found the Exercise Respiratory center in Prosper, Texas, which opened in October of 2023, where he and his team diagnose, treat and research the causes of exercise induced respiratory symptoms in older children, adolescents and young adults. This pioneering center specializes in maximal exercise exertion with simultaneous airway, respiratory and cardiovascular evaluation to pinpoint the root cause specific to each patient. Cook Children's is one of only a handful of pediatric centers nationwide offering CLE the gold standard for diagnosing Eilo.
Also joining us in the studio are doctor Andy Kreutzer, Megan Karas and Jenny Airy. Doctor Kreutzer is a research scientist at Cook Children's and currently works with Doctor Robertson at the Exercise Respiratory center in Prosper, researching exercise induced laryngeal obstruction and dysfunctional breathing in young athletes. Doctor Kreutzer has a PhD in exercise physiology. Megan is a speech language pathologist. She joined Cook Children's in 2019 and has an extensive background in treating children with complex medical concerns in a therapeutic setting. Megan is dedicated to helping children with voice disorders and exercise induced laryngeal obstruction. She believes that every child and family is unique and should have personalized medical care in order to help them reach their full potential.
Jenny is a clinic lead and sports physical therapist at Cook Children's Southeast Rehabilitation clinic in Fort Worth, Texas. Jenny is a certified manual physical therapist and a board certified clinical specialist in orthopedic physical therapy. Her areas of specialty include pediatric orthopedic and sports injuries as well as chronic pain syndromes and dysfunctional breathing. Her passion is to help young athletes meet their goals and return to prior level of function by providing evidence based individual care. Welcome everyone, thank you for having me.
Doctor Robertson, can you give us a little background on the program and your vision for creating it?
[00:03:16] Speaker B: Absolutely. So the number one cause of exercise induced respiratory symptoms in kids is going to be asthma. Asthma is well treated by every pediatrician on the planet. It's 13% of children in this country. And so there's no shortage of good medications and therapies for it. But for a patient who doesn't have asthma yet, still has the same problems it can cause during exercise, there is no clear cut path or next steps really laid out or appreciated by the general medical community. So that's where we come in. The exercise respiratory center is a one stop shop for these patients. The vast majority of them will end up having Elo, or dysfunctional breathing or some combination. The challenge with both of these diagnoses, though, is that they're functional problems. They're not problems about diseased tissue. And what I mean by that is they're normal structures in the body being used in an abnormal way that's causing symptoms. And so if they're at rest or talking or just breathing calmly in a doctor's office, all the exams and all the testing you can do is completely normal. And so we have developed the exercise respiratory center to bring these patients in, in a controlled setting and exercise them hard enough to provoke their symptoms. So that while they're having symptoms, we are simultaneously observing their airway, their respiratory system and their cardiovascular system, so we can see where the malfunction or malfunctions is occurring.
[00:04:50] Speaker A: So are there triggers that cause eilo? And if so, do we know what those triggers are?
[00:04:57] Speaker B: Triggers are generally high ventilation sports, not so much weightlifting, but something like running, swimming, gymnastics, the sports like volleyball and soccer, the football positions like wide receiver that involve a lot of sprinting. These are sports we see ice skating, hockey. What is unique to the individual patient is what specific part of their sport is triggering their symptoms. For some of our runners, it can be that long distance is fine, but short sprints are where their problem is. Whereas other athletes may have the reverse problem, they don't get breathing problems until they've been running for 3 miles at a moderate pace. Some of our athletes will only have breathing difficulty when they're changing positions or direction quickly and having to cut or use their entire core to brace themselves. And so part of the interview process when we first meet our patients is finding out not just what are their symptoms, but exactly where in their sport and their body position and activity level do their symptoms occur. Then we try to reproduce that as best we can in a testing scenario.
[00:06:08] Speaker A: According to the NIH, Eilo is fairly common among adolescent and young adult athletes, particularly females. Do we know why that is?
[00:06:16] Speaker B: There's some theories on why it may have a higher female predominance, mostly having to do with the anatomic size of their voice box. It being sort of a bottleneck of the airways, it being common. We don't know what exactly causes it. It seems to occur in about 5% of the general population, the general adolescent population. However, you're talking about something that in most of these patients is only provoked by high intensity sports. Not everybody does high intensity sports, and so there are many people that would have this if they exercised strenuously, but they don't, so they never have the symptom. And so who's coming into the office is definitely less than that 5%.
[00:07:01] Speaker A: So what challenges do the symptoms create that make diagnosing eilo difficult?
[00:07:08] Speaker B: The hardest thing about Eilo with regard to diagnosis is that I it's a lot like a misbehaving child when they're well behaved. You have no evidence that misbehavior just occurred. The same thing with the voice box. When it is misbehaving, it looks different, it acts different, we can observe it, but when it is behaving normal and when the patient has no symptoms, there is no evidence that it's just around the corner with one more mile an hour of speed on the treadmill.
[00:07:36] Speaker A: So take us through the process of testing and diagnosis.
[00:07:41] Speaker B: We approach these patients first with a simple history, physical exam, and some baseline lung function testing. We also generally like a normal baseline EKG and baseline echo to rule out any cardiac, structural, or electrical problems that could be causing this. Cardiac causes of these types of symptoms are exceedingly rare, but serious. And so we always want to make sure, for the safety of the patient, we're not pushing someone with a cardiac issue. Once we've identified the extent of their symptoms and specifically what types of maneuvers and the exertional levels trigger them, we will design basically a treadmill or bike protocol based on what we think is most likely to provoke them. And so we do not have a set thing we do. We run everybody through. Our approach has been to customize it to that person's level of activity in sports. Our whole exercise test is geared around trying to catch these things in the act. And so what we do is we combine the continuous laryngoscopy during exercise with another test called a CPET cardiopulmonary exercise test, using these two things together simultaneously allows us to not only view the activity of the voice box, but to view the, in real time, the cardiovascular and respiratory systems, how much oxygen the patients are consuming, how much CO2 they're producing, what is their heart rate when they hit their symptoms, what level of exercise are they hitting when their problems start. So it also allows us to tell the patient what is not happening to them and then also what is happening to them when they experience their symptoms.
[00:09:20] Speaker A: So in the absence of effective medications to treat EIlO, once the patient is diagnosed, what treatments are prescribed and how are they determined?
[00:09:28] Speaker C: So speech therapy is very important for these patients. There are certain breathing techniques that we teach these patients to help them manage their symptoms independently. And a lot of times, these breathing strategies will either significantly reduce their symptoms or in some cases, resolve their symptoms when they're using these strategies consistently. And so we always talk about referring them over to speech therapy and then physical therapy a lot, too, to help teach them these strategies and work on their breathing patterns as well.
[00:09:58] Speaker D: So with physical therapy, we really have the patient carry over those techniques that Megan, our speech therapists, teach them while doing their activity. So we focus on strengthening what might be a little weaker in their system or what compensations they're having to really have them benefit from using that, getting back into their sport or their activity of choice.
[00:10:24] Speaker A: So, in addition to pulmonology, it takes a pretty big team to provide care that results in the best possible outcomes, and that includes otolaryngologists and speech pathologists and psychologists, respiratory, physical and speech therapists. Does a patient see all of these as part of their care? And what role do they play in caring for patients?
[00:10:46] Speaker B: That is the whole team that is available for these patients. But it would be rather burdensome to go through that many appointments if you only needed one or two. And so we tailor the treatment plan and the therapists and physicians involved tailored for that patient and what they're dealing with. Our otolaryngologists serve twofold. There can be other exacerbating factors in these patients, helping to irritate the larynx in some way, then making the coming together of their vocal cords more likely because of that irritation. The ents are the experts of this part of the body, and so we can, we often involve them to ruling out other things or other causes of, say, vocal cords being twitchy, for lack of a better term. Our physical therapists do an amazing job with the postural issues and the dysfunctional breathing, which just kind of take an aside and define that term because it's one not many people would be that familiar with. Dysfunctional breathing is essentially an abnormal breathing pattern that causes symptoms. So it's not diseased lungs, it is using the wrong muscles in the wrong way to breathe. The way to think of it is using your chest, neck and shoulders to do all the work, instead of the diaphragm, which is the big muscle underneath your lungs at the top of your abdomen. And so the dysfunctional breathing, which we also evaluate simultaneously while we're ahead looking for ELo in these patients. Dysfunctional breathing can play a huge role in our patients and very often coexist with Elo. The connection, we think, has to do with the fact that the way the body works is actually quite ingenious. When the brain sends a nerve signal to the diaphragm to contract to take a breath, right before that signal gets sent, another signal is sent to your vocal cords, commanding them to open, almost like your throat is preparing for the breath ahead of time. So if you're not using your diaphragm very well, or efficiently or even at all, you're not sending that signal to the cords to open. And so for Elo, the mainstay of therapy is the therapy with a speech therapist. And probably the foundation of all of that work is diaphragmatic breathing. Basically breathing properly, because if you're not breathing properly, it almost doesn't matter what the throat is doing. And so the speech therapists and our physical therapists just work hand in hand, and often a patient will come in and see one of them, then the other 1 hour and the other, and the next hour. We have tried to establish a very good prompt and the clear communication between me, the diagnostician, and them, the therapeutic arm of the team.
[00:13:31] Speaker A: I'm going to spend the rest of the day worrying about my breathing.
Wow, that was really fascinating. So I hadn't really thought of that, having it and having an impact. So let's talk a little about speech therapy and physical therapy. What symptoms improve most with therapy, and what areas do you focus on during therapy?
[00:13:51] Speaker C: So speech therapy, like Jenny and Doctor Robertson were mentioning, is very important for these patients. So our goal in speech therapy is always to help these patients return to their highest level of function and their maximal exertion level with whatever their preferred sport is. So there's a few things that we work on in therapy to help them with that. The first thing that we try to teach them immediately is called the alobiolin breathing strategies. These were developed by doctor Olin and his team out of national jewish health. So these strategies are meant to be used during high intensity exercise, and they're meant to help keep the airway open the whole time these patients are exercising during their preferred sport. So we really make an effort to try to teach these strategies right at the evaluation to help patients start to gain control of their breathing. But it usually takes a little bit to tweak it. We usually start to teach it at rest for a second so they can get the habit down. And then during something that's more of a patterned exercise, like running on a treadmill, so that we can make sure their technique is still correct. And then we really look at their specific sport to figure out what patterns do they need to help keep their airway open that are going to help resolve their symptoms. That's one of the biggest things that we teach in speech therapy. One of the other things that we teach are another set of strategies called release breathing strategies. And these we also try to teach immediately at the evaluation. So these strategies are a little different than the first ones that I mentioned. These are meant to help return a patient's breathing back to their normal breathing pattern after their symptoms start. And so in an ideal situation, the second that a patient starts to have symptoms, and we usually use a five finger rating scale of them rating their symptoms between a one being very mild to a five being pretty extreme. Typically, I'll stop patients when their symptoms are a two or a three to start with. And as soon as those symptoms start, we have them stop exercising and practice these release breathing techniques to help teach them how to gain control of their breathing again and then again, really making sure that these patients understand when to use the strategies and how to implement them independently during all of their sports.
[00:16:08] Speaker D: And so often, this is where physical therapy jumps in. And one thing I really like about our program is Megan and I work very closely, often in the same gym, so we can really collaborate on these patients that we're seeing. And so once Megan teaches them those strategies, we in the physical therapy department look at how they're posturing, what their strengths are, and what they're doing at that time during the activity that is causing these symptoms. So, like Doctor Robertson said, often they are stabilizing through their core and holding their breath because they don't have weakness. So when they go to change positions, they can't control their breathing because they are weak during that movement. So they hold their breath, become a chest breather, and get a lot of tension. So we assess that. We look at those areas and see where we could help them improve their strength, help them improve their posture, help them focus on diaphragmatic breathing versus chest and neck breathing, while also using the techniques that they were taught in speech therapy so they can carry that over to their sports. We will have them work on doing their specific sport movements in session. So we will have them get on the treadmill, we'll have them do crossfit exercises, we'll have them do some of their gymnastic skills, volleyball, whatever it may be, and talk through how they can adjust that position, their breathing, when to use those breathing techniques Megan taught with that movement pattern. So it's really a big collaborative approach. And you often really see a light bulb go off in the patients and parents above their heads noticing, oh, that really allows me to get past that wall and get doing what they want to do at a more comfortable level. And so I really think we see a lot of benefits in our collaborative approach in the rehab component.
[00:18:00] Speaker C: Yeah, and I would agree with that because, like doctor Robertson said, that dysfunctional breathing component is so important for these patients and starting to teach them those correct breathing techniques, using their diaphragm and using their ribcage to get deep breaths while they're exercising. And it's something that we start to work on in speech therapy. But the more patients that we've seen, the more Jenny and I have collaborated together to realize, okay, there's some underlying weakness that these patients just can't get past without physical therapy getting involved, too.
[00:18:32] Speaker D: And the big piece is that carryover to home. We're big supporters of a home exercise program so that these patients and families get into their normal day to day routine. So they're breaking those old habits and starting to use the new skills that we're teaching them. So that's good posture, control, elobi techniques. Their diaphragmatic breathing is now their new habit, and it's a good habit versus the old ones they were previously doing.
[00:18:59] Speaker A: So what happens if Eilo goes untreated? What's the impact on the patient? Can it be outgrown?
[00:19:07] Speaker B: No, it cannot be outgrown. Unfortunately, what we often see is patients leave their sport, which is the thing we're all trying to avoid. These are generally healthy children and teens that are extremely passionate about their sport. A lot of our patients are exercising in their sport six to 12 hours a week. And so what we find is they're hitting a wall where they're not getting the full training benefit that you would think would come with 12 hours of exercise a week. They've plateaued early. They're training harder than their teammates, but they tire out faster, and we can't explain it from a harder lung standpoint. They're clearly well conditioned, and so not doing anything, you know, leaves a hurdle in their path. And the worst thing that can happen for these patients is they can't do their sport that they love, and so they have to stop.
[00:19:59] Speaker A: A key to advancing both diagnosis and treatment is research. And one research study recently showed that diagnosing Eailo can take nearly two years from the onset of symptoms. So, Andy, can you talk a little about current research your team is involved in?
[00:20:17] Speaker E: Yes, absolutely. So one of the reasons it can take that long is that we do have to catch Elo as it's happening. Right. We have to catch it in the act as the vocal cords are misbehaving. And so we have to have that camera in place during exercise. The more traditional way of diagnosing this would be to exercise the patient and then scope them right after exercise. But in a significant number of patients, the symptoms can already resolve by the time the scope is in place. So we're using the continuous laryngoscopy during exercise. But we're also trying to differentiate this diagnosis from other diagnoses, such as the exercise induced bronchoconstriction or asthma or dysfunctional breathing. And we're looking at potential cardiac issues, potential other respiratory issues. But all of those require slightly different data that we need to look at. So what we're really working on right now is trying to devise a test that lets us get those data that we can still individualize to the patient, like doctor Robertson was saying earlier, so we can trigger their symptoms as they experience them in their own sport, but we also get all the data in a single visit. Part of the problem is that before or in a more traditional way, patients would go to multiple specialists, have multiple tests done, single test in a single day. So it could take months or years until they finally arrived at the right diagnosis. And one of the projects we're working on right now is come up with a single exercise session that will let.
[00:21:39] Speaker B: Us test all of that testing for, say, exercise induced bronchospasm or asthma triggered by exercise. There's a very specific way you want to exercise that person to give you the best chance of finding what's there. That's well researched and well established, but it is not known currently. Is there an ideal exercise protocol for provoking elo, if it exists, or provoking dysfunctional breathing? If it exists, and if there is an ideal? Is there overlap, or does each one of these diagnoses need a separate test? So we're actively investigating that question. The answer is not known. Currently, our approach with patients is to try to duplicate in our exercise lab the type of exercise that triggers their symptoms that they're having difficulty with in the field.
[00:22:27] Speaker E: And then in terms of the treatment side of things, we're hoping to try to focus more on the patient experience, so on the feeling of breathlessness as our outcome measure. We are also currently in the process of acquiring a motion capture system that will allow us to measure biomechanical breathing patterns directly. So we're talking about the dysfunctional breathing. And what we would do is we can put 90 markers on a patient's chest and back, and we will have eleven cameras around the patient while they're exercising, infrared cameras, and we will calculate the volumes of the chest and the abdomen. And so we can exactly figure out what are the patterns of breathing? Are they breathing more into one compartment than the other? So more into the chest than in the abdomen or more in the abdomen than the chest? Are the breathing patterns synchronized? Is everything working the way it should? So, once that's up and running, we're hoping to first do a study on that in children, because nobody has done that, to our knowledge, to this point. And we're also hoping to combine that with our exercise laryngoscopy. And because that definitely has not been reported yet, can we see that interplay between the dysfunctional breathing and the elo, the exercise induced laryngeal obstruction?
[00:23:39] Speaker A: So you raise an important piece of information, or, I'm curious, testing at a younger age, is that something that currently, if no one's doing that, that's kind of a big breakthrough. And does that let you catch it sooner and help these kids not go through?
[00:23:54] Speaker B: I would say the ideal age is the age of symptoms that they're having this difficulty. Sometimes the child or teenager is diagnosed at a later age simply because that is where the level of competition and training they've advanced to is now enough to trigger their symptoms. Whereas that may be a more severe case, it gets triggered earlier with less activity. The youngest patient I believe we've done our ClE test on has been a nine year old. It is a test that is definitely scarier than it actually is to do it, but it's, you know, not every single nine year old is able to sit through it. The most important part of the test is the prep. So we use a special lidocaine gel to anesthetize or numb up the nose so that the person feels pressure, but they don't feel pain. Our camera is really tiny, about the size of a spaghetti noodle, but it's weird having a little spaghetti noodle in your nose. And so all we do is work with kids and teenagers, and so we take things slowly and gently with lots of explanation and, and hand holding when necessary. Out of our 58 patients that we've been able to perform this procedure with, perhaps there's been two additional patients who just weren't able to sit through it, but. 910 1112. We like capturing this in patients that early because that means we extended the amount of time they're going to receive the benefits of treatment.
[00:25:21] Speaker A: One of the keys to getting treatment for Eilo is educating primary care doctors and clinicians, sports medicine physicians, trainers and coaches. How is your team approaching this?
[00:25:32] Speaker B: Coaches and athletic trainers are on the front line of this. They often have a closer view of their student than the parent in the stands, and so they see things firsthand and are often the first person that the student is going to go to for help, as well as their pediatrician. And so we are creating continuing education programs for pediatricians, trying to get the word out about what these problems are and how to recognize them. For the coaches and athletic trainers, we are approaching some of the regional organizations for our city and state and part of the country, the professional organizations that the athletic trainers and coaches are members of, to try to get some time to be able to speak at their meetings. Sort of getting the word out is a big part of what we're trying to do, because beyond asthma, all the other things that can cause these exercise induced respiratory symptoms are pretty under recognized by pediatricians, but also just the general public.
[00:26:30] Speaker A: Is there anything else you would like clinicians to know from a referral indication standpoint, such as referring to a cardiologist versus a pulmonologist? When would they know to consider referring to your program?
[00:26:44] Speaker B: The best way I can answer your question, if I was talking to a pediatrician, is if you have a patient who has some kind of trouble when they exercise, whether it's cough, the funny breathing, getting short of breath, tiring out faster than they should for the amount of training they're doing, coughing, making funny noises, wheezing, strider, whatever, any of these symptoms with exercise, it's probably asthma. But if you've treated it like asthma and it's not gotten 100% better, that's where we would come in. And so that would be an appropriate time to send to us. There are some red flag symptoms that always make us think we need to check and make sure the heart is okay. These would be signs that the heart is just not pumping efficiently. So severe chest pain that's worse with harder and harder exertion, dizziness, lightheadedness during exercise, the losing feeling or tingling sensations in the hands and feet. These things are most commonly due to someone who is hyperventilating while they're exercising, which is unpleasant, but it's not dangerous. However, in the rare occasion that it is a sign that the heart is not pumping properly, we always take those seriously. And so any of those symptoms, or a patient who has a family member who had a heart disease or a heart attack, or needed a pacemaker under the age of 50, or has a history of sudden death in the family, especially of a child or even another teenager in the family who was an athlete, these things all should go to cardiology as well. And we can do that. We can make those referrals. Like I said before we exercise a patient, we make sure that they've had twelve lead EKG to map out the electrical pattern and rhythm of their heart, and then an echocardiogram to map out the structure and wall thickness of everything in the heart to make sure that that is normal and healthy when we start exercising. We've definitely done that a lot more in the post Covid era because most of our patients have had acute Covid at some point. It seems fairly ubiquitous these days, but for the pediatrician, whenever what you're doing and what you are trained to do isn't working in the exercise sphere, that's when they can send to us.
[00:29:00] Speaker A: So are there clinical pathways available like on the Cook Children's website?
[00:29:04] Speaker B: Yes. We've got several continuing medical education offerings for pediatricians that they can access through the cookchildrens.org website that are free. We also have a exercise respiratory center webpage that can be found by going to cookchildrens.org and just typing in EXRC or exercise respiratory center. We've got some resources there. We're currently developing that, trying to make it a little bit more robust and more useful and give more tools to anyone who's curious or searching for an answer to their kids problems.
[00:29:36] Speaker D: From the rehab perspective, I just want to add it in regards to coaches and trainers. When we're seeing a patient, we will often go through the proper releases from the family so we can communicate with that patient or students, coach and athletic trainer, tell them what we're working on, what we're seeing, and showing them and telling them how they can help that student continue with their activity outside of just our sessions. We're in a gym. We're not out on an athletic field. So that communication, that carryover really helps that patient carry into their day to day activity. I think that also plays a factor in teaching and helping those coaches and trainers learn a little bit in that collaboration with us while treating that patient, too.
[00:30:17] Speaker A: So are we the only pediatric program in north Texas that's offering this testing?
[00:30:24] Speaker B: We're the only people in Texas or the surrounding states that perform the continuous laryngoscopy during exercise in children. Speech therapists and physical therapists have spent a lot of time developing a very specialized skill set to treat these patients that is not part of just every PT program around the country. And so, though there are many wonderful physical therapy clinics and speech language pathology clinics around the city, there are not many. Like, I could probably count them on my hand, the places to go to get treatment for this just because the expertise is infrequently found.
[00:31:02] Speaker A: I should say this brings up yet another question. I was researching this. I didn't even really find a lot of research, if you will, on this. So is that fairly new?
[00:31:11] Speaker E: Yes, absolutely. So it's actually, it's been documented in the literature for a while. We have some articles from the eighties even that bring this up. Obviously not with the continuous testing, but this is a pretty emerging field, I would say. We just went to a conference in Pittsburgh in June, and literally everybody who was there was on one of the papers that's currently out. So it's a very small kind of niche field that is really developing and we're trying to understand more. It's not that well researched, so lots of opportunities for us to get our research off the ground and to hopefully collaborate.
[00:31:48] Speaker A: Fantastic. Well, thank you all for being here.
[00:31:52] Speaker D: Thank you for having us.
[00:31:53] Speaker B: Thank you, thank you, thank you.
[00:31:56] Speaker A: Thanks for listening to this edition of Doctalk. If you'd like more information on Eilo, you will find referral guidelines and clinical pathways on the health professionals section of cookchildrens.org dot. While you're there, check out the specialty spotlight series and grand rounds, and be sure to sign up for our Doctalk newsletter. Want more Doctalk? Get our latest episodes delivered directly to your inbox when you subscribe to our cookchildren's Doc talk podcast from your favorite podcast provider. And thank you for.
