COVID-19: The Latest Information from UPMC
Children's Hospital is part of the UPMC family.
Be safe anytime, anywhere.
To find a pediatrician or pediatric specialist, please call 412-692-7337 or search our directory.
A resource for our network of referring physicians.
For more information about research, please call our main office at 412-692-6438.
Ranked #8 Nationally by U.S. News & World Report.
Dr. Todd Otteson joins us for the final of 3 podcasts on ENT issues. Today, we are discussing sleep apnea.
Dr. Vellody: Hello everyone and welcome to the Down Syndrome Center of Western Pennsylvania podcast. As always, I am your host Dr. Kishore Vellody. We are joined again today by Dr. Todd Otteson who is a pediatric ear, nose, and throat specialist at Children’s Hospital of Pittsburgh of UPMC. Todd, thanks so much for joining us again.
Dr. Otteson: Thanks, it’s good to be here.
Dr. Vellody: Great, well today, I’d like to talk about sleep apnea which is a condition we consider quite frequently in people with Down syndrome. But, before we get too far into this, let’s start with a definition of sleep apnea. Could you please tell our listeners what it is?
Dr. Otteson: Sure. Apnea basically just means that we’re having a pause in our usual breathing pattern. Of course, sleep apnea means that it occurs while we’re sleeping. There’s two separate types of sleep apnea. So there’s obstructive sleep apnea, which means that there’s no air flow because there’s some type of obstruction at some level of the airway. Or there’s central apnea which means that the brain just isn’t telling the body to take the breaths that it needs.
Dr. Vellody: Ok, thanks. Now that we know what it is, could you tell us how often sleep apnea occurs in the general population and then how often does it occur in kids with Down syndrome?
Dr. Otteson: The general population . . . there have been a couple of studies recently. It’s probably, maybe, 2%, give or take, either with sleep apnea or maybe up to 5% with some type of snoring or sleep disordered breathing which probably is just a more mild representation of sleep apnea. Children with Down syndrome . . . it can be probably 3 times that or it may be even more. There is a higher incidence and prevalence in the Down syndrome population.
Dr. Vellody: Thanks, Todd. I know there are some experts in sleep apnea that say that 80-100 percent of all children with Down syndrome have sleep apnea to some degree! Could you tell us why obstructive sleep apnea so common in Down syndrome?
Dr. Otteson: I think there are probably 3 things at work. One, we mentioned that adenoids and adenoid enlargement is more of an issue in children who have Down syndrome. Second is the tongue size is a little bit larger in children who have Down syndrome. Especially when you’re lying on your back, a larger tongue may fall back and cause obstruction at the back of the tongue. Finally, sometimes just the general tone that a patient has can be an issue just because if the tone is decreased, then it probably becomes even that much more decreased when we’re sleeping. There’s more collapse at the level of the pharynx and back of the throat.
Dr. Vellody: Ok, so all that collapse and narrowing is what we suspect leads to more sleep apnea in children with Down syndrome. What are the symptoms that families will report when their child has sleep apnea?
Dr. Otteson: Probably the classic symptoms would be pretty loud snoring - like sometimes parents will say they can hear the child from rooms away. Second is restless sleep – like they’re all over the bed. The classic is that they’re hearing pauses or they can see that they’re trying to take a breath and then finally they have a big gasp that is basically the breaking of the obstruction so that they can take a deep breath. That’s the classic and probably there are not too many patients that are classic so it can be sometimes difficult to diagnose. I think sometimes we also take into account the daytime symptoms. Those are what happens when we’re sleeping, the nighttime symptoms. During the day it could be that they wake up with a morning headache, that we’re more irritable during the day, or we’re needing to take a nap. Sometimes the teachers at school will say that we’re tired during the day or lack of attention or focus. Those can all be signs, potentially more subtle, of a sleep problem, especially sleep apnea.
Dr. Vellody: I couldn’t agree more that the signs of sleep apnea can be very subtle. Some of the kids I see in clinic have been misdiagnosed as having ADHD or as being poor students all because they have sleep apnea that is impairing their ability to concentrate. So, Todd, could you tell our listeners what can happen if sleep apnea goes undiagnosed or untreated?
Dr. Otteson: That is a great question. I think I would put it just in a little bit of historical context. When, in the ENT community, we first really became aware of sleep apnea and really how common it is, first of all, but also that it can be very serious, it was actually in the Down syndrome population. It was children who had their sleep apnea just left untreated and they were presenting at a fairly young age with right sided heart failure and pulmonary high blood pressure. It shortened their life significantly. Really, that is what happens with untreated obstructive sleep apnea. It can really be life threatening for the long term because it causes irreversible changes to the right side of your heart and you can have pulmonary hypertension. I think that’s the long term but even for the short term we talked about inattention. There can be subtle behavior things that I think, left untreated, even the day to day activities and lifestyle of the child could be improved if we treated their sleep apnea.
Dr. Vellody: That’s really important information. I have met several families who suspected, or even know, that their child has sleep apnea but elect not to treat it because they think it’s just an issue of loud snoring at night. I explain to all our families that untreated sleep apnea can potentially lead to very serious (and irreversible) conditions in their child. So, how do you officially diagnose sleep apnea?
Dr. Otteson: Well, the gold standard is to get a polysomnogram (a sleep study). The reason that’s important is that what the parent or caregiver observes is not always exactly what’s represented on the sleep study. That’s actually been studied. It doesn’t always coincide. Remember I said we’re not always the classic patients. In fact, on the contrary. I think that’s why the polysomnogram really will tell us if there’s sleep apnea or not. I think any time you study something or try to observe something it may change its nature a little bit. Meaning that that night that you spend in the sleep lab, I always will ask parents, “Was this a representative night’s sleep. Was this your usual.” It’s hard to be hooked up to the monitors and be in an environment that’s not what we’re used to. I still think, though, it’s 100% worth doing. Sometimes I’m very surprised about, not only is there sleep apnea or not, but sometimes it’s much more severe than I would expect. Even that, I would manage differently.
Dr. Vellody: Thanks, Todd. I hope to have one of our Sleep Medicine physicians with me for a future podcast to discuss the specifics of what all goes into getting a sleep study done. However, I think it’s important for our listeners to know that the 2011 American Academy of Pediatrics guidelines state that all children with Down syndrome should have a sleep study done by the age of 4. So, even if your child has absolutely no symptoms that you can see for sleep apnea, it is still important to get the study since they can often have sleep apnea. Ok, Todd, from an ENT perspective, what are the different surgical options for sleep apnea once it is diagnosed?
Dr. Otteson: In the ENT group, the most common surgical procedure for sleep apnea would be to remove adenoids in the very young child, but, most commonly, tonsillectomy and adenoidectomy (removing tonsils and adenoids). If it’s very severe sleep apnea, then often we’ll consider doing an airway evaluation or an airway scope in the operating room at the time to see if there might be another level that’s obstructed beyond the tonsil level and adenoid level. Those are the mainstay or surgical therapy for sleep apnea.
Dr. Vellody: Could you walk our listeners through the procedure itself? What is involved in removing the tonsils and adenoids what post-op care follows?
Dr. Otteson: The procedure itself, there’s probably a variety of ways to do it but I’ll just explain the way I typically would do it. I use what’s called the coblator which is basically it looks a bit like a pencil. It has a heated end so that it can cauterize while we dissect. The tonsils usually come out first, then the adenoids using a mirror because of their location. After the tonsillectomy and adenoidectomy, especially if its being done for sleep apnea, we observe overnight in the hospital to make sure that we’re oxygenating well and that we’re drinking well enough to not get dehydrated at home. Those are the two big issues. If the sleep study shows severe sleep apnea, I mentioned that we would manage that a bit differently. Usually anyone with severe sleep apnea, I will observe them actually in the pediatric intensive care unit for a night as well. The post-op course can sometimes be a little more rocky for children with Down syndrome. They might need a bit more coaxing to eat and drink as they should. We’re probably more likely to come in and possibly need some IV fluids. We should not necessarily be at more risk for bleeding. It’s more making sure that they stay well hydrated. Sometimes children with Down syndrome drink very well, sometimes they’re a little bit obstinate. I always prepare parents that he or she may drink well and be able to go home easily the next day, but I usually have them prepare to spend even 2-3 nights just in case to make sure we’re not sending the child home too soon and then be back with needing IV fluids or something like that. So that’s the procedure and the immediate post-op course. There’s a risk of bleeding after a tonsillectomy. It’s probably 2-3%. For that reason, we restrict the diet for two weeks and we restrict the activity for that long as well. That means just nothing to eat with sharp edges – no Doritos or pretzels or anything like that. Activity wise, usually I would say, no school for a week and then limited activity the second week we’re back. – no recess of PE or anything like that.
Dr. Vellody: What are the outcomes after tonsil and adenoid surgery? How often does the sleep apnea actually get better?
Dr. Otteson: Usually I will say that we can usually bump down 2 from the severity – meaning if it’s severe obstructive sleep apnea then we can usually get to mild or even normal. Where if it’s moderate, we can cure it. It actually can be variable in the literature. In my experience, it’s probably a good 80-90% of the time we can make that much of a stride in their sleep apnea. The literature supports that. With children with Down syndrome, it’s probably the best we can hope for is probably 2/3 that improve with their sleep apnea. Again, it depends on the severity of the sleep apnea in children with Down syndrome as well.
Dr. Vellody: I think that’s an important point. Given the multiple possible locations of airway obstruction in a child with Down syndrome, tonsil and adenoid removal does not cure their sleep apnea as often as it does in other children. Could you tell us a little bit about what you do in those situations? Are there other surgical options?
Dr. Otteson: There are and really it’s directed specifically to the site that is obstructed. I’m thinking of a specific patient that we share who did very well for a time after tonsillectomy and adenoidectomy. Probably a year and a half after his tonsillectomy and adenoidectomy, he began having sleep apnea symptoms again. We repeated the sleep study, and he did have moderate obstructive sleep apnea. We did a scope – he actually let me do a scope in the office. He had very significant lingual tonsils which is actually sort of the back of the tongue. We went to the operating room. We did a scope to make sure that that was the only level that was obstructed. Then we did a lingual tonsillectomy which is removing that type of tonsil tissue. If it’s at the level of the epiglottis or the base of the tongue, there are other procedures where we may need to . . . It’s known as a hyoid advancement or hyoid suspension. If it’s a floppy larynx known as laryngomalacia which sometimes we can see in older children or those who have decreased tone, then the procedure would be a supraglottoplasty which is trying to trim up some of the tissues that might be causing that floppy airway. Depending on the severity of the sleep apnea, if it’s very severe despite all of our efforts surgically, then a tracheotomy would need to be entertained just because that will bypass any upper airway obstruction. That’s the cure basically, definitive cure, for sleep apnea. There are a lot of issues that go along with a trach, but, in the right circumstance, it’s necessary.
Dr. Otteson: Thankfully, it’s pretty rare to get to the point of needing a tracheostomy for the management of sleep apnea. Well, before we end this podcast, are there any other issues related to sleep apnea in Down syndrome that you want to discuss?
Dr. Otteson: One other issue, though, leading up to a tonsillectomy for children who have Down syndrome is we need to pin down the stability of the spine just because of the positioning on the bed. Usually we’ll use a shoulder roll beneath the shoulders just to elevate the head so that we can in an appropriate position for surgery. Children with Down syndrome are more prone to have an unstable atlantoaxial joint. We always will make sure that we have x-rays or additional studies if the x-rays are not enough information. But that’s important just for our own positioning in the operating room.
Dr. Vellody: Thanks, for bringing that up, Todd. The AAP guidelines no longer call for routine neck x-rays but we continue to get them prior to surgical procedures that require a lot of neck movement (like tonsillectomies). Ok, Todd, that wraps up our time for this podcast. Thanks for spending the time to record these podcasts with us – they were really informative!
Dr. Otteson: Sure, happy to do it. I appreciate it. Thanks.
Dr. Vellody: Well, thank you! And thanks, as always, to our listeners. I hope you found this podcast as educational as I did! Until next time, bye bye!
View other podcast topics related to down syndrome.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
In addition to the main hospital, Children's has many convenient locations in other neighborhoods throughout the greater Pittsburgh region.
With myCHP, you can request appointments, review test results, and more.
For questions about a hospital bill call:
To pay your bill online, please visit UPMC's online bill payment system.
Interested in giving to Children's Hospital? Support the hospital by making a donation online, joining our Heroes in Healing monthly donor program, or visiting our site to learn about the other ways you can give back.