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All right, good evening, everyone.

We're going to get started now.

I just wanted to say welcome to everyone to our second webinar on behalf of the Arid Digestive Society.

Our topic tonight is dysphagia in the first year of life.

My name is Tara Baleek.

I'm one of the pediatric ATTs here in Chicago, and I'll be the moderator for our session.

We have an excellent group of a multidisciplinary group of presenters with us tonight, made up of neonatology, speech and language pathologist, pulmonologist, otolaryngologist, really coming from the diverse practices from all over Seattle, Chicago, and Atlanta.

Dr.

Al joining us all the way from half way across the world.

The group will be speaking about their role and outcomes through their multidisciplinary collaboration impacting dysphagia, specifically within that first year of life.

We will have time for questions at the end, but please feel free to tap them in the Q&A as we sort of progress, and then we'll get to them as we go.

We're going to just jump right into it.

We'll start by handing this off to the team from Seattle Children's.

Great.

Thank you so much.

I'm going to share my screen.

Thank you all for having me.

My name is Crystal Perez.

I am a neonatologist at the University of Washington, NICU, and Seattle Children's.

Here just wanting to represent the inpatient perspective acknowledging that as a small portion of a chapter in an infant and eventually child's life from our team.

Just the standard disclosure that there are none, and a huge thank you to all the babies and families and teams that help contribute to this and the experiences that we'll share.

And I guess the disclosure I'm a mother of two children and breastfed and went through the like.

I think some understandable personal experiences here too.

So it's always nice to start with overall goals and just wanted to highlight some of those from the NICU perspective and what are those feeding goals and then NICU broadly speaking.

Clearly, I think everyone's goals achieve safe, efficient oral feedings and acknowledging there can be barriers to that, but I think going into it with that overarching goal.

I also wanted to highlight for the group just the significant benefit if it's aligned with parent's goals of the importance of breast or chest feeding.

I think I, as a separate hat and passion of mine, but I want to acknowledge yes, for my nutrition sake it is incredible, but it is actually much beyond that.

And there are some evidence to suggest that the route by which human milk is shared, including directly from the chest has additional benefits.

I wanted to highlight also for this group, those who are not aware that there's additional immune protections that again are beyond nutrition, wanted to share the number needed to treat of only three for the prevention of acute otitis media.

Happy to talk more about that, but I would also challenge anyone to find another intervention as effective as that for disease as well as bonding with the family and reuniting the baby with the family to go home.

Overall potential clinical signs of feeding challenges and dysphagia.

And I wanted to highlight some of the nuance and trying to label these as clear dysphagia or challenges because I think it's important to acknowledge the pathology and the point of exploring this is not just a pathologize.

I think every baby comes into it and clearly on a progression scale can have some atypical development, but everyone's goal is kind of getting to that point that it's safe and efficient for everyone's sake.

Some of those signs could include disengagement with feeding.

I think the one we often, I guess as neonatologists think about most is decreasing physiologic stability with changes such as bradycardia or desaturations, having non-reassuring respiratory findings such as noises you may hear, some increased oxygen needs.

There's some degree of trending kind of later in the chronic phase of understanding what bicarbonate lab values may imply.

That's not 100% clear or straightforward, but it's sometimes of use to trend some of those values.

Additionally, coughing, which is really, I will openly share a not common manifestation in the NICU.

I think maybe that's part of why they're at higher risk.

I can't quite manifest that, but choking and gagging and I have some coughing on an infrequent basis.

Then just in general, the gestalt, I think the more you care for preemies, you kind of have a understanding of what normal progression is, sort of the range might look like.

When babies aren't mating up the milestones within a range that you would otherwise expect and the clinical expectations are really important too.

One is a highlight and then I'll pass it over to Amy, a colleague of speech language pathology is incredibly talented in our NICU, but wanted to highlight in my sort of in our tenure and using fees.

I've really been incredibly impressed and how superior it seems to swallow studies in the past, how we've tended to use them culturally, but how incredible it is to just visualize anatomy.

Some of which is really the driving factor as far as understanding the dysphagia and some of them can actually be an intervention can improve that.

The lack of radiation with the fees I think is also incredibly important in thinking about these tiny babies who have gotten countless x-rays and other exposures to reduce that.

Again the highlight I cannot underscore enough, but if breast or chest feeding is of importance and a goal for the family and being able to assess that and build confidence in that model, I think again that is I think maybe one of my most favorite qualities about the fees.

There's also sensory function, you can assess that understanding and that's really impossible on the full study in the classic sense.

You can view the impact of interventions as well in real time over the entirety of a normal feeding session as opposed to stopping or stopping radiation.

Then the bedside exam, I think that's another incredible, probably my second favorite is that you don't necessarily have to remove the baby from at least that normal scenario, having a comfortable chair for a parent to sit in and practice feeding I think is more and more what we really need to be going forward with active engagement of families and the things that we do.

I know the one thing that I can think of is that you can't fully visualize this while of during the swallow with a wide out scene, but I think there's clear indication kind of before and after that gives you clues.

Then something I always tell my residents and med students it's really one moment in time just like a blood gas.

I think always remembering some clinical correlation that everyone has a bad day and just acknowledging that for the babies as well.

I'll pass it over to Amy.

Oh Amy, we can't hear you, but I think keep going and then you interrupt me.

As far as feed processes in our NICU, we try to do it no earlier than 37 weeks with her exception.

Again, I think that's just highlighting and wanting not pathologize as much as possible.

The exams are conducted at bedside with the bedside nurse present and then we usually remove the NZ if possible, but it's not required.

There are two scope sizes available and we try to swaddle make everyone comfortable and use seat roasts before.

We replace the scope.

I know that understandably that can make an infant not so happy.

I really love the feeding as previously as by the nurse, the parent or another therapist and really not the speech and language pathologist who's there interpreting the exam with odor language.

Here's just a really nice demonstration of an assessment of a chest feeding.

Just to prove the point of how feasible this is.

I think the additional layer here if you wanted to visualize is this particular infant needed some breathing support.

In theory, if I write down on paper, all the things required, it seems like a lot and yet I think it was a pretty seemingly natural and comfortable experience.

Here's some just to date.

I think we've had 104.

We're trying to keep track of those that we've done and some of the anatomical differences we found, some of them which may or may not have a whole bunch of clinical correlation including nasal septal deviation but some which have been really important including even I think the sciargosal cyst that was picked up and I think that was ultimately really the driving force of why that particular baby was having difficulties.

As far as finding other things just to note that are just things we have seen that I think are encompassed and probably shared amongst the crew are listed here.

I don't want to talk through all of them but the things I'll highlight that are unique that probably would not have been picked up on a BFSS included the decreased entry responsiveness as well as aspiration of one sort of secretions and so I think those are important features.

With that can you hear us Amy?

No I can't but I see your beautiful smile but case examples that I'll kind of work through I was going to do a couple.

Please let me know if I'm going over time but is that 33 week old with cardiophacial cutaneous syndrome and trying to understand clarity on home going regimen.

I will share that this particular diagnosis was incidental so this baby was enrolled in a study looking at genetics and didn't necessarily manifest any symptoms in that came back.

As one can imagine with some additional layer of closer look at how things were progressing there is a lot of I think understandable concern on the medical team and wanting to make sure knowing that risk of dysphagia challenges were part of that.

There was clinically some flu sensitivity really on all feeding and there was frequent spontaneous events while feeding and so with the medical team's concern I think there was real risk and some pushed you to stop all oral feeding.

Of course the family did not want that and really felt strongly that breastfeeding was important to them and then was there any safe bottle feeding plan for practicing at home?

As far as what happened so the fees were performed and I think importantly did look at the chest feeding manifestations.

There was some mild delay.

There was only one mild render penetration with no aspiration and what was really important was mom's perception was right on especially with that sort of could act regardless of what that was happening felt and pulled the baby right off.

Overall a really reassuring breastfeeding session.

From a bottle feeding it did have frequent laryngeal penetration and residue with warm and did best with the chilled bottle had some limited efficiency even before fatigue.

Overall knowing that the outcome really built a lot on the mom's confidence as well as the medical team's confidence in these feedings that were happening on breastfeeding so I think really bridged the gap in promoting what were ultimately their goals and this baby did go home kind of I think within one or two weeks growing well on the plan with supplemental NG as well as ongoing bottle trials and outpatient therapy follow-up so did have another fees after discharge that was being planned as far as ongoing monitoring.

I wanted to highlight one more case and I want to give space for others to talk about their experiences but this was a former really tiny baby 24 and three week baby with BPD working on PO feeding progression had a history of neck and PDA but still in the NICU at 41 weeks and trying to understand the flow sensitivity a lot of variability and performance from day to day would take a lot difference big differences in volumes kind of stalled overall on progression and did have some fatigue related decline.

There's a lot of differences of opinion between both parents as well different primary nursing and other members of the medical team as far as you know should we just stop you know can't feed him or should we push through and so you can imagine that was that was really difficult to interpret so really wanted to understand what is the safest feeding plan.

Some findings I think that's a jump really quickly that the outcome was this helped everybody including mom and dad kind of get on the same page of what the best thing to do was but there was some delayed pharyngeal initiation and laryngeal penetration regardless of tempest are actually with worse feeding when chilled there was no aspiration and I was best with the warm bottle which was interesting that would not necessarily have been something that it would have been picked up.

Ultimately went home within a week of this and having a lot more confidence in what the safe feeding plan was and so a combination of some PO as well as supplemental NG and I think it was really nice to know that both mom and dad were on the same page and understandably the stressful transition from NICU to home is hard in all cases and in particular worries about this so I think this was really beneficial.

So getting toward the end potential outcomes won't have to go through all of this but I think there's three main ones one after a fees reassurance with no feeding plan modifications clearly there's lots of ways to adapt the feeding plan to should there be concerns and I think it allows you to kind of look at that in real time as I've alluded to and then you know what nobody really plans plans for but I think it's important to acknowledge the families before a fees it's possible that we know that it's really not safe for oral feeds and reassurance that we really do want to promote ongoing pre-feeding activities for the hope the hope is that eventually it may become safer I know that's not always the case.

Overall I think just weighing risks and benefits it's really a multidisciplinary team and the baby is a whole human instead of just a summary of its parts and so remembering that yes lungs are important, nutrition is important, medical status and the parents in fact are super important so trying to think of overall how you weigh risks and benefits of the decisions is important.

So what we noticed as far as outcomes and tracking for babies so far is that the fees really has a lot more specificity of dysphagia management we have accomplished a significant reduction in a swallow study procedures that were being conducted which is great.

The length of stay actually has been shortened overall as well for babies with severe dysphagia and I think that's mostly because we are much more willing to look quicker instead of waiting for a long time and I think families feel more encouraged and confident should there be a need for home gavage sheets to go ahead and pursue that which is I think incredible and then having outpatient follow-up is needed.

All that said it's important I think for me and others to think critically I'd love to hear the audiences thoughts for at home and outpatient therapy and the assessment of implications and value of this.

I know that it's really hard and outpatient and being plugged at wanting to track this so I'm working to figure out how this is impacted and hopefully not negatively but potentially for those in outpatient who are helping manage these babies.

Wanting to track how long it is for those needing air digestive follow-up in that clinic and then I think I still have a lot of questions of is there actually value in broadening this use of support or oral feeding sooner in babies with longer term rest trainees and I think that's manifested most in increasing resuscitation and survival of the youngest 22 to 24 weekers and also not wanting to delay important milestones beyond their pulmonary development.

I know I talked fast but just wanted to again thank everyone for their time and some of these are some of our graduates who thankfully look happy and enjoying their first birthday cake and see on the right so thank you all.

Thank you.

Can you hear me now?

No.

Still.

Yes.

Now we can.

Oh my goodness.

Well this is why I love working with Crystal Perez.

Crystal, thank you for doing this entire lecture for us.

I'm sorry to all.

I think you did a fabulous job representing the different perspectives in the NICU so thank you Crystal.

Sorry about that technical difficulties.

I had a neighbor start with a weed wacker so I quickly ran into another room to try to make it work elsewhere and I apologize to all.

Thank you.

All right.

We're going to switch over to the Chicago team so Jim or Laura if you can share your slides and take it away.

All right.

Well thank you Tahir.

My name is Jim Schroeder.

I'm one of the pediatric otolaryngologists at Lori Children's here in Chicago.

Thank you for that amazing presentation and discussion about the challenges and the benefits of fees in the NICU and working up some real complicated babies.

We thought we would take the baton and move towards valuation and utility of the fees exam in the first couple of months of life particularly in the outpatient setting and really try with using a few cases to identify why a fees may be a better choice than a swallowing study, right?

Why choose one over the other?

And there are really some advantages of course bedside if we are dealing with some of our infants who are still in the hospital.

As mentioned reduce radiation exposure for us we have a very large cardiac congenital cardiac surgery program and we've been studying this particular population and have significantly reduced an already high amount of radiation in a very vulnerable population through the utility of this exam.

Really using fees to identify and assess the impact of particular anatomy on dysphagia and its management and we'll go through a few cases to highlight that.

Fees is really a beneficial exam when we're particularly looking at secretion management particularly in nonoral infants and of course as mentioned the babies who are presenting who are primarily breastfed but yet have the typical signs and symptoms that another child would have, noisy breathing, wet laryngeal congestion that needs assessment that we previously have done using bottle feeds.

This slide is really just to identify because we're talking about fees doesn't mean that fees is the only exam to use.

This is a collaborative work up often in some fairly complicated children.

We have lots of tools in the toolbox to use.

We're just really highlighting one today but in no means is meant to imply that this exam should take the place of any of these others.

Laura, did you want to take this?

So I'm Laura Hengis-Mullinero.

I'm one of the speech language pathologists and the director of rehab at Laury Children's and have been doing fees with Jim Schroeder for a very long time.

I think we're going on 16 years.

But when we talk about instrumental evaluation of swelling there's really two primary options right?

There's the fluoroscopic swallow study and then there's the fees.

When considering which one to choose it's important to remember that neither one of these is a pass fail exam.

So often you'll hear that this patient failed their swallow study or failed their fees and I'll be honest I don't know what that means.

So saying that a patient failed that exam doesn't really tell you what to do next or where to go from there.

So when picking one of those you also need to understand what's the goal of the exam?

What are the symptoms that are concerning?

Why was this child?

What kinds of things are your markers for improvement?

Is the question what is the swallowing physiology?

Well both of these exams can tell you that.

Both of these exams can look at the physiology of the child swallow.

If we want to look at whether there's a possible anatomic contribution clearly the fees is superior in that regard.

The assessment of the laryngeal anatomy is part of the exam and is built into that.

Whether aspiration is playing a part in the overall picture you could probably get that from either one of the exams.

Whether you want to you have to weigh all of the benefits and the advantages and disadvantages that Dr.

Prez did such a nice job of kind of outlining what the advantages of fees really are.

Sometimes we need the information for surgical planning.

Swallow studies and fees are both information gathering opportunities.

And so is that information needed for surgical planning?

Sometimes in the aerodigestive program that is absolutely what's needed.

So sometimes a fees is better.

Sometimes a fees if you're looking at the laryngeal anatomy and the laryngeal contribution and you're doing surgery on the larynx and that's certainly something you want to take a close look at and how those two the swallowing in the airway interplay.

Sometimes the swallow study is better.

If you need to look at the oral phase or you need to look at the upper esophageal phase of the swallow the only way to do that is really with the swallow study.

There's been plenty of data to support that if fees and a swallow study give you very similar information both of them can identify aspiration and penetration with a really nice agreement and sensitivity and specificity.

So here's an example of a patient that presented with wentopulminology diagnosed with asthma right or diagnosed by the pediatrician with asthma wentopulminology who said well you're kind of young for that.

Let's take a look at swallowing and see if that's playing a role.

Though we did the swallow study first clearly there's pretty obvious aspiration during the swallow.

This is a kid without other significant medical history and the physiology not terrible but there's pretty significant aspiration.

So the question then became why is aspiration happening?

It wasn't that he failed the swallow study.

It was what else do we need to know?

So we decided to do a fees as a complimentary exam to give additional information to see if we could help put together a treatment plan to make things better to see what we could improve from the dysphagia.

The fees exam again we saw the aspiration not surprising both exams identified that but we saw the aspiration entering the area through the inter-writtenoid space which then prompted a bronchoscopy and identification of a posterior laryngeal cleft that was then repaired.

So this is just a good example of how using both exams was really helpful in the overall care of this patient.

So to move forward in some patient examples we've collected a few of the patients that we've seen over the last month or two in our fees clinic, our weekly fees clinic.

We see a lot of kids who have vocal cord dysfunction of course we have to differentiate between the more common, iatrogenic or of course idiopathic, a little less common.

And another subgroup that we've been really looking at is the children who have birth trauma as a subset of that idiopathic group.

And here's one patient that presented recently presented with noisy breathing and with wet laryngeal congestion.

So was brought into the fees clinic and we were able to determine yes indeed there was a vocal cord paralysis or at least peresis.

This child was actually breastfeeding and we can see that we are getting penetration over the AE fold but it was important as you can see there's coughing up as we're getting some aspiration but it was important for us to really help identify that there was that the likely etiology was birth trauma because the literature will support that these children tend to improve at a faster rate and have a better prognosis particularly related to their dysphagia because of that subset.

Here's another group of patients with this particular patient who we've seen at seven months but I think it really highlights the difficulty of really doing a fees in the NICU and as we mentioned everybody every can have a bad day and this patient was seen at one of our community hospitals by an excellent otolaryngologist who did a scope at the bedside in the NICU before the patient was sent home is now seven months.

They were diagnosed with a normal laryngeal exam and did not have a swallow assessment before they left.

We saw them at seven months and they had persistent abnormal cry it was really a weak cry or worse cry with persistent laryngeal congestion but overall doing well.

We can see here that the patient did have a left vocal chorporalysis and on the fees exam was aspirating.

You can see the aspirating happening during the swallow where they're getting significant subglottic contents that they're fairly quickly coughing up.

So really just highlighting that if the symptoms are persisting we need to repeat that exam over time and I really do think doing a fees exam can be challenging.

It's very beneficial in the NICU for the right patients but it really can be challenging.

Here's another one of our patients that three week old who presented for laryngeal Malaysia the most common reason we're seeing children in our fees clinic also have this wet congestion so we were worried maybe there's a feeding variant laryngeal Malaysia and of course we do the fees exam and you can see there's clearly no laryngeal no laryngeal Malaysia.

We are getting a little retro flow of the subglottic contents you can see that the cry for fringes opening quite widely particularly as the bolus gets larger and as that goes it's that retro flow that the patient begins to aspirate and then cough up.

So because we had noisy breathing wet congestion and dysphagia but no laryngeal Malaysia and obvious cause and there's no vocal chorporalysis we sent them down for screening airway films which is my protocol you can see here we're getting narrowing on the lateral film and of course this patient had an aortic arch and a setup for a repair the double arch was causing compression of the esophagus since the retro flow and then the noisy breathing in the subglottic area.

Again just to sort of bring home the point this is one of our children who we saw for the parents were trying to increase oral feeds that we knew that childhood severe dysphagia already has a G2 mom was really interested in offering more pleasure feeds.

The patient wasn't taking much by mouth and had previously had a video swallow taking really trace amounts but did not aspirate but you can see here as we begin even the fees exam there's significant neurologic laryngeal Malaysia but also the patients pooling their oral secretions and the hyperparency and significantly aspirating those food secretions we put a few drops of dye in but the patient had already aspirated by this time here so really this is an opportunity to confirm that there is significant aspiration of secretions then we talk about the actual treatment plan and options for that but also helps us helps the parent realize why oral feeding really isn't an option here.

We see a lot of children who have vocal corporalysis but we're more and more seeing kids who have paradoxical vocal fold motion in infancy also called laryngeal dyskinesia vocal dysfunction of infancy etc often misdiagnosed as laryngeal Malaysia and these are the children that we see here are two examples they'll present with laryngeal Malaysia and then when we do our exam they don't have that.

How much this is associated with dysphagia is unclear we have some selection bias because almost all the children coming into our clinic are coming in for noise breathing and a wet laryngeal congestion but you can see here the children at time when they relax particularly the vocal cords do abduct very nicely but when they're feeding or when they're agitated the vocal cords are adducting at the wrong phase of the breathing causing a loud respiratory stride and that's what we're seeing here and we feel and in these children particularly that led to swallowing dysfunction and dysphagia particularly with the timing of the swallow that leads us into an outpatient breastfeeding population we spent a lot of time working on Laura I think you're going to take over this slide.

I certainly can although I think a lot of this is repetitive I think Dr.

Prez and Amy and Hermione did a nice job of putting together and talking us through kind of the breastfeeding phase that clearly the opportunity to assess breastfeeding directly is hugely important and so beneficial one of the greatest advantages in my opinion to two of these is the opportunity to directly assess breastfeeding.

And we've been doing the outpatient population right this is really well tolerated you know I need about 300 patients now and only had you know about two to three so you know one percent or less who really haven't tolerated the exam we can almost always get useful information.

There are few children who will refuse to take to the breast but we're still able to you know maybe with through dying some secretions and providing and placing the scope we're able to get really useful information on these patients and you know we've demonstrated that the physiology of the swallow on a bottle fed infant is is different than the physiology of the breastfed infant.

So really just taking a breastfed infant who has maybe wet laryngeal congestion and giving them a bottle with some barium in it may not really give you the full picture or the best picture or the accurate picture of what's going on and if they do aspirate in that setting they may not be doing the same from the breast and therefore we may be taking some a baby from the breast who doesn't necessarily have to have that happen.

This is just an example of one of our babies who is breastfeeding again it's more of an opportunity to engage the parents and do some goal setting and provide information on visual confirmation of what what we're seeing on the swallow.

This baby you know has had a progression of the dysphagia over time particularly on their anti-epileptic medications and you can really see there's a bore pharyngeal swallow and we we do have to slow down the swallow a bit mostly with oral compensatory strategies and maybe a little thickener but we can't get too thick because the residue then gets aspirated and particularly with the delayed swallow.

So really this is a great opportunity to fine tune what is possible and really kind of work with the family to identify their goals and how we can best achieve them.

So really just in summary I think the instrumental evaluation particularly in children with noisy breathing and strider in the first couple of months is quite helpful for various different reasons.

So thank you we appreciate it and we're we're happy to be part of this discussion.

Laura anything else from you?

Thanks very much.

All right thank you both.

We'll pass it off to the last team out from Atlanta.

All right thanks everybody.

I'm like Dr.

Valica said I'm I'm Nikila Raul and I am calling in from India right now so please apologize.

I apologize for any sounds in the background as my kids are getting ready for school.

So Erin Crane and I are going to be presenting today about our outpatient setup in our dysphagia management clinic or what we fondly like to call aerodigestive light.

So let me forward here quickly with regards to disclosures I'm sorry we did not include these in our slides but I am actually in India on a full bright studying infant feeding so that's that's one of the disclosures.

Okay so I'll just start by talking about who is involved in our dysphagia management clinic.

Let me back up a little bit and just talk about the impetus for why we developed this and I think a lot of institutions do have fees clinics and we were really looking for a way to create a fees clinic and at Children's Healthcare of Atlanta we have a large feeding program that is actually based out of the behavioral side meaning children who have avoidant restrictive food intake disorder or ARFID that is where the feeding program and Children's really started and we were recognizing that one we had some of those kids who actually probably had medical issues that were not addressed early on that led to a versus feeding and two we didn't have enough bandwidth on the aerodigestive side to really catch all these young young kids who are coming in with dysphagia whether that was post viral in the hospital they were found to have feeding issues or they were admitted for failure to thrive and found to be aspirating and so we developed this like I said aerodigestive light that we housed actually in our feeding program and allowed us to create a program that encompass the entire age spectrum as well as from the medical all the way to the behavioral side so we can see what's happening through the course of life and the reason I want to give that background is that we consider ourselves a pro feeding clinic you know and in many ways I think aero when we have the pulmonology involved in the directly there may be a little you know there may be super conservative and you know we tend to be you know with safety definitely in mind we tend to try to push feeding a little bit more so our clinic has ENT GI dietician and speech involved in the clinic Erin if you want to talk about our patient population here okay so kind of piggybacking on that so we don't have pulmonology involved and so when we the kids who are most appropriate to come see us are kids that don't have significant respiratory compromise or respiratory history prior to showing up on our doorstep so oftentimes these are kiddos who they have some of them have been identified in the NICU with concerns for dysphagia but oftentimes there's kids who have gone home fully orally feeding with the development of concerns for aspiration over the next couple of months maybe they at their birth hospital it just they weren't feeding enough for concerns to present and then they just kind of slid by long enough and then at some point someone says okay you're coughing and choking a lot let's get a swallow study most of the time the first swallow study that's done around here is going to be a video for a scopic swallow study and that's the point at which hopefully someone says okay there's something going on here let's see if we can figure out what the next step is and so these kids have usually had some type of swallow study that identified some pharyngeal dysphagia or there are rare circumstances where they did a swallow study and there's no evidence of pharyngeal dysphagia but this cat this kid sounds terrible and so there's still that desire to figure out what's going on most often these kids have had a recommendation for a modified diet they have been there have been recommendations for compensatory strategies we all know that these come with barriers so thickening is not a great solution a lot of the time it's not easy it's not cheap it's not consistent and so having that as your solution isn't always the best solution and then we often have these kids who come in and they you know oftentimes will have a kid who is fully orally feeding for three months went in for a swallow study had aspiration thin nectar maybe honey was tried maybe it wasn't tried and they're sent off with five ml trials once a day three times a day but really limited opportunity to continue to develop these skills and like I mentioned at the beginning the kids who come to see us really present with a stable respiratory status or a remarkable respiratory history if they have a significant respiratory history and we have a really good relationship with the air digestive program at Children's and we are able to send those kids over there instead of them coming to see us.

Sorry it was muted I think I saw in the chat someone asked about GI so we can talk a little bit about that in our program so we do a group intake where before we start we critically assess the previous instrumental assessments and see if we can actually identify potential ideology dysphagia whether that's anatomic whether it's functional whether it's neurologic things like that just based on the pattern and then as I think Dr.

Schroeder did a good job of saying that you know the fees is just one part of the exam if you come to this clinic in all likelihood you're going to get a fees at some point that is that is like I said the impetus was for a fees clinic but we couple that with the findings of the video fluoroscopic swallow study as well as the clinical assessment of feeding one thing that we're really attuned to is that neither the fees nor the video fluoroscopic swallow studies are representative of what's happening during normal swallows sometimes we see kids who don't want to take the barium in the video fluoroscopic swallow studies and of course the fees is you have a camera in your nose so you know how how much are you bothered by that we you know take all of these pieces as a part of the puzzle and not necessarily the single factor that makes the decision of what to do next so we we look at all the different factors that could be avoided it could be causing dysphagia and I think it's important to recognize that dysphagia doesn't only mean that dysphagia is just a dysfunctional swallow so it goes beyond hey is it like someone had talked about is it pass fail that's a terrible way to look at it because you know you could have a dysfunctional swallow without everything going straight into your lungs and so we look at all these other factors including do they have an interest in feeding are they showing signs of aversion because it feels terrible it's going down the wrong way how are their oral skills if it's a kiddo who it seems otherwise healthy is there any oral and anatomic issues you know I I know it's a very controversial topic but we've identified some kids who have tongue types actually impairing the ability to push the bolus back in a cohesive and timely manner I might just spill back so is there something like that that's obvious that we can address how about GI tolerance for pathology we've had kids with issues who who are showing signs of aversion who have gone for scopes ended up having EOE and very young kids is under a year of age we think about the cost of care for these kids we have a lot of families who are unable to afford the things that Aaron was talking about whether it's modified diet or feeding therapy even sometimes getting to that how much they pay out of pocket so we really take all these factors into account do the kids tolerate thickeners right whether it's the taste of it whether it's residue and things like that that'll impact how effective that thickener is have the symptoms changed over time we've seen kids with laryngeal Malaysia who started as having really significant issues from a sex swallow breathe perspective initially and as the noisy breathing and those type of typical symptoms of living on Malaysia resolve when we do a fees maybe they're not noisy anymore but you see that the maybe the epiglottis is curling and that's allowing for liquid to sneak into the airway or maybe the arid noise are flopping in and that's dragging in liquid into the airway so you know really looking at a whole the whole holistic perspective and then of course other medical conditions which could be affecting swallowing whether that's prematurity or neurologic issues or or any other comorbidities that we should consider one of the things that I love about this program is how patient centered it is so we're not just evaluating for dysphagia our goal is certainly to resolve ideally the concerns for dysphagia get these kids to eating hopefully without any more modifications than is absolutely necessary um are we really prioritize maintaining oral skills and interest in PO as we mentioned earlier we're part of a larger program that works with these the consequences of taking food away at an early age we have a lot of behavioral feeders who they didn't get great experiences early on and they didn't develop a positive relationship with feeding for a multitude of reasons and the consequences of that are really long lasting and impact not just the kiddo but their family in many ways so we're able to talk families often through different options so you know if a kiddo aspirates there's not just one solution like it doesn't necessarily mean that the family has to take the recommendation that we feel results in the safest swallow that doesn't mean that it's the best fit for that family necessarily and so we try really hard to offer the options to the family and help guide them in the decision-making process we try to maintain as much normalcy around feeding as possible while trying to figure out what the true cause of dysphagia is and then again always looking at we want to be sure that our current feeding problems don't result in ongoing and long-term feeding consequences that we're going to be paying for for years to come decades to come sometimes I mean it really is it can go on forever so we do want to touch how to differ how we differentiate these kids from our typical aero patients usually we like I said before we find them before there's really pulmonary consequences there are some signs and symptoms that people have already gone over whether it's some wetness with them feeding or coughing choking or things that suggest that feeding is just not right but you know the pediatrician listens and says hey everything sounds good any imaging that's been done looks good it just haven't had time to develop those things so we're trying to intervene early before they get to that point now if we have persistent issues or upon presentation there are concerns from a pulmonary perspective and absolutely these kids are headed to our more of our aero digestive route which often they do they do get a lot of the same work up but it's just from a little bit of a different lens where we're a little more protective because they're already starting at a deficit so we just wanted to give a couple of examples of kids who have come through our clinic because I think what what really is highlighted in these is that that team-based approach and that that man that shared decision making with the family is so important in managing these kids to figure out what works for the families and how we can you know slowly but surely make progress towards normal feeding so Erin if you want to talk about this kiddo.

Alright so this is one that I think that Nikila and I take some particular pride in so this kiddo she was a term baby has some reflux feeding difficulty coughing with a bottle had for any electomy she had a brewery brewery at seven weeks of age um had some concerning symptoms for reflux which earned her a swallow study we all know that we can sometimes find things on swallow studies that then we can't unfind right so what was identified on the swallow study is that we had aspiration of thin and or slightly thick and not mildly thick at that time she went home doing really small volume PO's they brought her back for another swallow study and we saw the same thing we saw continued aspiration when they came to our clinic the parents were really defeated they were frustrated their baby really wanted to eat and broke their heart to say nope you can only have 15 ml's and they were frustrated that they didn't have a better solution at that time and one thing that they mentioned is that they didn't feel like the swallow study was an accurate reflection of her skills they said you know that that's not how we feed her and we've all had kids like this right like it's the situation fluoroscopy doesn't match what's what's done in the home environment it's one of the limitations of fluoroscopy so when she came to us she was only taking 15 ml's of fin liquid one times a day which she eagerly accepted she would cough only when she was so overly eager that she was accepting larger volumes um so we were able to do a fees on her and I think it ended up being like 10 minutes long she was upset in the beginning we did see some reflux that then we saw laryngeal penetration concerning for aspiration only when she was agitated as soon as she calmed down everything looked really good swallow trigger was really timely there were no concerns for laryngeal penetration or aspiration when she wasn't upset with this information we were able to to talk with the family about so they were feeding and were there with us we were able to talk with them about the circumstances that resulted in dysphagia and the circumstances under which she swallowed safely um we with this particular kiddo we had a primary GI that we wanted to loop in as well and he was concerned about the evidence of aspiration on the opms but he was willing to give our strategy a try and so we slowly progressed this kiddo we started with 30 bells once um priority each bolus um increasing with outpatient feeding therapy with increasing by 30 ml per bolus um and she came back to us in eight weeks and she was fully orally feeding and ready to pull the tube um it was incredibly encouraging that we were able to see such larger volumes on fees then they were able to see on the opms so the decisions to make her npo on the opms were made with five ml's and 10 ml's um and we were able to see a full ounce um during the fees which kind of gave us the confidence to be able to say so we know that she can do 30 let's see how she does with a little bit more um so it was it was a big win and i think what this highlights is the benefit of having a place for these kids to go when they leave the inpatient setting uh who you know whether it's a fees clinic or um aero whatnot the where uh you know we know that all of the instrumental studies that we do are just a snapshot in time and things can look different and kids practicing you get better at swallowing by practicing swallow just like any other activity so so just using that counseling and and share decision making and more information really helped us progress this kid to where they want to be um only because we're short on time um we'll end with that one the second one was uh similar but basically demonstrated how with some um modification and some we did end up doing surgical intervention on that kiddo we were able to pull the tube um but basically showing that um that it's not necessarily always about getting it perfect but it's about um working with the family to meet the goals uh at the pace of the child um so we'll stop there uh and let Dr Valica take over and and if there's any questions we can we can take them out doesn't look like there's any other questions other than gi question that you all have answered I figured if we have a few minutes for us I think it'd be nice to just have a description of some of the work that you guys have done and I'm just gonna run a quick case and see if we do it that way all right so I'm gonna present a pretty classic that we just sort of just gone through right a x-23 weaker um twin gestation followed with the expected outcomes for a child who's boarded nearly 24 weeks chronic lung disease pulmonary hemorrhage history ran apathy and emia prematurity had neck was intubated for about three months in an excavated four-lead uh Ram canola who's now on four liters high flow um so the question really comes so this child upon discharge or nearing discharge from the niki was feeding by mouth there were no baseline concerns noted um for my bedside clinical evaluation was taken about three ounces in 15 minutes the question I have for just the panelists you know just speak up is would you get an SLP consult in this role with the child asymptomatic um in this capacity well assuming I have a microphone do I have a microphone you do yay unbelievable um I guess I'm curious uh this little baby has not seen any SLP consult throughout his niki stay he's been that little and that young and and never had any help he's got excellent nurses apparently that helped him on that journey um that's unfortunate I do think that it would have benefited him to have a neonatal therapist I help him but um you're is there concern now there's no baseline concerns you're just literally at the point of discharge do we want an SLP consult is that the question while there had their niki stay would I mean I think that's the thing I think we sort of advocated for then more likely than not and you know early SLP val or SLP val as part of our niki care would be beneficial um this child didn't and I think that was one of the points I was trying to highlight that you know just for all of us listening that um having intervention from an SLP I think makes sense at least is that what I'm getting from your impression as well as from everyone else yeah I think Tara what's interesting here is the the phrase no signs and symptoms of aspiration and I think you really have to think about according to who or who right so you know if the parents are saying that the parents don't know what to look at or what may be a sign or symptom of aspiration if the discharge papers say that you know well what does that mean and I think that really speaks to the expertise and the skill of a speech language pathologist particularly someone who is skilled in evaluating babies in the niki to determine are their signs and symptoms because I think if you look back objectively there probably was something I find it hard to believe that this patient was completely normal and fine and has not one symptom that there's a problem particularly as you're going to get to the next few slides yeah um so currently they're five months old and they've been seen in the outpatient clinic um they've been transitioned from their rancant of course to just four liters high flow um and as they sort of came back they sounded a little bit more noisier so they had an incidental chest x-ray which completely shows some core centerstitial markings and granular opacity um and because the kid was eating well and was enjoying bottle feeding and taking large volumes um in this outpatient setting they finally got a speech and language pathology referral um because of a pulmonary concerns for chest x-ray for concerning for aspiration um when they had their evaluation um I guess what they saw the child's on four liter high flows setting appropriately um took you know nearly two to three ounces in 15 to 20 minutes with no overt signs or symptoms of perennial aspiration no concerning airway sounds um because of their history of prematurity and their prolonged intubation history and the worst in respiratory status they got an instrumental the question after the group is you know we frequently encounter these kids who aren't always on rumair and thoughts on feeding on four liters high flow nasal cannula or any high flow I'm just so curious if that child would need to be on four liters of high flow nasal cannula if we'd have a speech with all just helping him with his feeding in the first place but that's maybe an aside um you all can laugh at me but come on um but there certainly is a question and I guess I'll bring Crystal's opinion to the forefront here if we could Crystal um on we have certainly experienced that the babies do show differences on a bees whether you have um low flow or high flow oxygen at the time of the bees and so it it certainly there's a lot of research on it and yet there needs to be more what do the rest of you all think I was I was just gonna add I think and um just to tell you I well I would argue there's not a lot of research on it um I think there's some things that can take somewhat arbitrarily and what I often harp onto the team and say Amy included is if you can have a child the from a pulmonary standpoint stable um I think the feeding will go better uh regardless of um some support uh and so I think if you start sprinting them uh off of things uh then there's a kipnik so they're they're swallow and feeding it's gonna go differently so however that support man is best I will say that like so in general I have a knee jerk reaction against feeding little ones on this high flow but there have been like the few and far between kids that I've gone up to see for an eval who they've been on four leaders I've been like oh they're gonna look terrible and I walk up there and they like look okay now could that does that mean that maybe they don't need the four leaders I think that's an argument but like there are some kids I think it's just like everything else in our lives right like it's very patient specific and like there's there are occasions where it could be considered but in general I totally agree that this I don't expect this kid to feed well well breathing has to be at an appropriate level of respiratory effort in order for us to be able to sustain it long enough and stop it long enough to swallow safely so um if he needed four leaders then he needed that but it doesn't doesn't surprise me that we might need some help in the feeding world if he's on four leaders I'll just throw out there there are niggas who feeding and practice occurs on CPAP and it happens that I don't think the outcomes are so dramatically different in those than others and so I think it's just a humbling humbling experience technology I think the biggest thing I wanted from this next one as as we sort of progression to eventually getting a swallow if we're thickening consistencies you know thickening agents for kids at this age especially with this history of neck how do you navigate that if you were to have aspiration you know what have you used in your practice that can work well and you know using NfML AR as a slightly thickened formula thoughts on that for people practicing this in the community I do have colleagues of mine that have spoken quite highly about NfML AR fortified to 24th as it being an appropriate slightly thick consistency we have not used that at our NICU so I can't speak from personal I don't know if any of the recipients to this lecture want to add in their thoughts I think thickening is hard in any in any realm I think gel mix is a reasonable consideration too it thickening is inconsistent on its best day and it's there are times when it's totally appropriate and it's great and there's some good thickeners out there but it's really hard for parents in a lot of circumstances yeah I think the other thing I'd add is I think that I saw that this patient was at least partially breastfed and I'd be really reluctant to transition completely away from that and introduce a formula that A isn't for isn't for premature infants and B is in breast milk okay we'll go over the swallow real quickly and because we're getting to time and I want to be mindful of everyone's time so you can hear the swallow you can see the swallow you know we see some incomplete airway closure during the swallow some frequent laryngeal penetrations with the swallow but no overt signs of aspiration but other than some trace silent aspiration child obviously normal UES function but no precial change in swallow physiology whether on four liters or two liters and as our last slide this is the sort of take on points we had you know if you saw this wet x-ray first step discontinueral feeding all some none you know thoughts on that and restricting PO home take for these kids well I think we've made our thoughts you know sorry I think you know our thoughts we would certainly not continue full oral feeds but certainly practice I think is important we really have gotten away big time from in our system of taking away everything I'll just let everyone else chime in and certainly on that study on the snippet of the study that you showed us there's quite a rapid rate of feeding presentation and no pacing so there's a lot of things we would do to modify the way that baby's being presented the feed that I think may improve the quality of the swallow on the little snippet that you showed so I'm sure that you're no and that's really valid right because I know our research technically shows you know greater than three steps for swallow can really increase your aspiration risk and timing and pacing can go a long way but we'll see where that goes I think low moderation we don't do enough with it you know changing nipples make us crazy but changing the nipple changing the position of the child changing the way we are presenting the liquid can make a big difference and certainly I would want a fees for sure on this child watching him breast him or her breast feed and then I think there's a lot of strategies that may help minimize the respiratory risk and you've got to clean up the respiratory situation on a baby that's a dpd kid yeah and I'll close it out with asking you know for a child who doesn't have over you know silent aspiration um and otherwise looks well when feeding when do you sort of reconsider reassessment in these situations ideal time frames I think I go back to what are we trying to improve how what's our measure of success is it the chest x-ray is it the the four leaders like repeating the instrumentals only as good as defining what our outcome is and and I think a lot can change in even weeks but then if this is inpatient in the nico if you're on four leaders from alveolar development and stability and so I think acknowledging and that would be really cautious I guess in empathologizing saying that silent aspiration is uh without making some of those adjustments needed I think you can successfully breastfeed fully as well um depending on the scenario so I would agree with everything everyone's saying and being really cautious that can be damaging very long term um tangibly and intangibly for baby and family okay thank you all right I'll close it out with that um if I can switch slides all right I just want I want to say thank you to everyone who participated as our panelists that was a wonderful uh discussion that we all had um thank you for all the uh participants who joined us for this evening um to close that just as a reminder the 11th annual meeting of their society is coming up um this December November um second through the fourth at the University of Colorado School of Medicine so please join us there um if there's any other questions or any whatsoever please reach out to us afterwards and we'd be happy to email back with any other things that we can help with but thank you all thank you