EPISODE 157

[00:00:00] MD: Hey everybody, thank you so much for tuning in to this episode of First Bite. Just a friendly reminder, that if you'd like to earn credit for this episode, complete the accompanying audio course registered for ASHA CEUs on speechtherapypd.com. And you know, I love a good coupon, don't forget to use the new coupon code, Bite21 to get $20 off your registration fee. So, check out speechtherapypd.com, register for an annual subscription and don't forget to use Bite21 for your $20 off.

So happy listening, happy growing, and from the bottom of our hearts with everybody behind First Bite, thank you so much for being part of this journey. Don't forget, check us out @firstbitepodcast on Instagram world and @firstbite on Facebook. Happy learning y'all.

[INTRODUCTION]

[00:01:09] MD: Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A speech therapy podcast sponsored by speechtherapypd.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC. The All Things PFDs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice, Heartwood Speech Therapy here in Columbia, South Carolina. I guess, lecture nationwide on best practices for early intervention for the medically complex graduates. First BiteÕs mission is short and sweet, to bring the light, hope, knowledge, enjoy to the pediatric clinician, parent or advocate by way of a nerdy conversation. So, there's plenty of laughter too.

In this podcast, we cover everything from AAC to breastfeeding, ethics on how to run a private practice, pediatric dysphagia to clinical supervision, and all other topics and the role of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts, to break down the communication barriers so that we can access the knowledge of their fields, or as a close friend says, ŅTo build the bridge.Ó By bringing other professionals and experts in our field together, we hope to spark advocacy, joy and passion for continuing to grow and advance care for our little ones.

[00:02:50] EF: Every fourth episode, I join in. I'm Erin Forward, MSP, CCC-SLP the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a newest clinician with experience in early intervention, pediatric acute care and nonprofit pediatric outpatient settings.

[00:03:11] MD: So, sit back, relax and watch out for all her squirrels and enjoy this geeky gig brought to you by speechtherapypd.com.

[INTERVIEW]

[00:03:17] MD: Okie dokie folks, today is a big day for me. This is a professional and personal nerdy girl dream come true, and yup, fan girl mode is activated. Because, well, our guest is an absolute leader in our field, and I am in awe of the significant amount of contributions she has given us. The world of PFD and dysphagia is hard. Individually every day can be a struggle for the little ones that we are called to serve and their caregivers. It takes a toll on our own hearts, because we walk that journey, both the valleys and the mountain tops and every single step between, with them. It's a journey that's made even harder because of the lag time between research to practice.

Often the therapeutic interventions we select are based off of anecdotal events, such as moments of observations from colleagues, because honestly, did any of us really get a grad course dedicated to pediatric dysphagia, much less the new term, pediatric feeding disorders? Probably not. And we know it can take 15 to 20 years for research to make its way mainstream. 

But that is why we are all here today. Dr. Georgia Malandraki is going to bring the research to you. She has poured her heart into her work and it is palpable. You can feel her passion for the topic and for our field because it's just that vibrant. So, a quick background, Georgia Malandraki, Ph.D., CCC-SLP, BCS-S, is an associate professor of Speech Language and Hearing Sciences at Purdue University and a Board-Certified Specialist in Swallowing and Swallowing Disorders. She is also the research director of the Purdue I-EaT Swallowing Research Laboratory and Clinic; whose link is in the show notes at the end. Her research focuses on investigating developmental and treatment swallowing neuroplasticity, and developing rehabilitative and telehealth interventions for dysphagia.

Dr. MalandrakiÕs work has been funded by the National Institutes of Health, the American Academy of Cerebral Palsy and Developmental Medicine, private foundations, and several mechanisms through the Purdue Research Foundation. Clinically, she serves patients with neurogenic dysphagia across the age span and consults clinicians on the use of safe and reliable dysphagia telehealth services. 

Finally, Dr. Malandraki has served on editorial boards for ASHA journals, is currently an editor for the American Journal of Speech Language Pathology, and the current president elect of the Dysphagia Research Society. And for all of this, and so, so much more, in November at ASHA 2021, she will officially be an ASHA fellow. So huzzah! Dr. Georgia Malandraki, thank you so much for coming on. Oh my gosh, my face hurts from smiling, and I had Botox and can't really feel it, but I can feel that.

[00:06:10] GM: Thank you so much. Oh, my God. That's such a humbling introduction. Thank you so much for having me, I'm really honored to be in this podcast with you, I want to thank you for all you do to spread the word about pediatric dysphagia. I do want to disclose right from the beginning that, you know, although I have been a speech language pathologist, and probably a mini-neuroscientist as well, for about 19 years now, I entered the world of pediatric dysphagia in the last about seven to eight years. And hopefully what we can do today is share some of the work that I've been able to do or to contribute with your audience. 

But thank you so much for having me. I'm really, really excited to be here. And again, thanks so much for the very humbling introduction.

[00:06:57] MD: Absolutely, this is awesome. IÕve been like following publications and journals and like dreaming of one day going to the Dysphagia Research Conference, but tiny humans, it makes it difficult to do a lot of traveling because potty training, and then learning to tie shoes. That's the world that I just exited. And now we're tying shoes and learning to ride a bike without training wheels. Oh, my goodness, I'm not sure we're going to survive this stage.

[00:07:26] GM: Well, the good news is that, you know, because of COVID, the good part was that the DRS conference is now virtual. And we are Š

[00:07:33] MD: What?

[00:07:34] GM: Yes, and we're considering. So last year's conference was virtual, and it will actually be available for people to sign up if they want to just watch it sometime in the fall. But also, next year's conference, we are considering a hybrid mode. So, we will let people know if we will go that way. But we definitely hear those concerns, and we hope that more people are going to be able to attend this way.

[00:07:58] MD: Yes. On behalf of all working parents, yes, please. Thank you.

[00:08:03] GM: Great.

[00:08:04] MD: Okay, well, we have so very much to cover, and this topic is huge because I hear your request, I get the emails, I may be a little late and responding. But I hear what you're wanting, what you're wanting is to understand the why behind what it is that we do, and how to do it better. And so, we're going to start at the beginning because that's where all of our treatments should start, is with a true understanding of a patient's etiology.

So, Dr. Malandraki, if you could explain to us, why is it important to better understand the neurophysiology of swallowing across development from both a scientific and a clinical standpoint?

[00:08:52] GM: Yeah, no, I think that's a very important question to try and answer because you know, a lot of what we do and not only pediatric feeding, and so on, even in adult, I would say dysphagia is based on the symptoms that we see, right? So, it's trying to treat the symptoms, and although some of these interventions can be effective, they're usually only work temporarily, and then don't really treat the underlying physiology of the problem, or pathophysiology of the problem.

So, in my view, it is very important to understand what's happening behind the scenes, because swallowing itself is a neuro-physiological event. It's actually a series of neuro physiological events, motor and sensory, that actually involves all levels of the nervous system from the brain, all the way to the periphery, the nerves, the muscles, the sensory areas. In the oral cavity, for example, in the pharynx in the mouth and the throat. So, being able to understand these processes, how they develop and what happens when this development is disrupted, is going to be the only way for us to really develop interventions that will target these disruptions and hopefully can then treat the underlying pathophysiological components as well, therefore, hopefully being more effective.

So that's the whole idea behind better understanding how swallowing is controlled, what happens when it is disrupted, and how can we intervene to those disruptions, not just to the symptoms, but to the underlying behind the scenes, processes as well. We have made, I believe, in this area, some important advances in the adult-focused work. In pediatrics, it has been more difficult and it is more difficult to do any type of research, I think in pediatrics, as you guys and all of your audience knows really well, right? 

Because we're dealing with some ethical questions here, we're dealing with behavioral issues. So, it's not as easy to ask kids to do specific things for you for research, compared to adults. So, we haven't progressed as much in the pediatric world. But we do have, I will say, that in the last probably decade, we do have more and more research in that area as well and we're learning more and more about the neurophysiological basis of dysphagia, the genetic basis of dysphagia, and things like that.

So, there are some steps that are happening in that aspect as well. But the reason is so that if we better understand what's happening behind the scenes, then we will be in a place to more effectively diagnose and more importantly, more effectively treat these kiddos.

[00:11:21] MD: A lot of the kiddos that I pick up, they get diagnosed with oral dysphagia. Or the doctor will write on the script "picky eating". And I'm like, ŅNo, this is not a picky eating. This child had open heart surgery.Ó I mean, they had local [inaudible]. I have a fiery redhead on my caseload right now, who is a pistol, bless his little bones. And it's difficult to translate to the family what's going on in the sense of their education level, and why their child is not eating commensurate with their chronological age, because we have all of these comorbidities. It was more than just heart surgery.

I mean, in trying to code switch from technical jargon to non-technical jargon and meeting them where they are, that is hard. But I think we're making headway. And so, folks, even when you understand it, I mean, God, all mighty, I'm still learning but make sure that you're translating it into user friendly terms for the caregivers, so that they understand what it is that you're doing. That's a huge piece in the practice.

[00:12:34] GM: Yeah, absolutely. And I think the other thing that you are pointing out through your comment is that how interconnected the different systems are, and especially in small children, we're dealing with all these different systems, being coregulated and being codependent in a lot in a lot of ways, right? So, it is very likely that an open-heart surgery, of course, for many reasons, could lead to also pediatric feeding and swallowing problem. Both are involving oral and pharyngeal components. So, I think it is important to also think about all the different systems that come into play and how they are coordinated. How they are codependent.

I understand, it's hard to explain that to parents a lot of times, but using kind of parallel sometimes helps. So, sometimes when I try to explain things that happen behaviorally that they could easily change, and how these may affect some medical conditions, I will give examples such as a child may be born with the predisposition to have diabetes. But if they develop diabetes or not, it will depend on their nutrition, right? So, a lot of these kids may be born with some anatomical issue, but whether or not they will develop some behavioral feeding issues may depend on some other behavioral or environmental factors as well. So, using some parallels may help with some of that communication.

[00:13:53] MD: Where I'm from, we don't use the word diabetes, we say you got the sugars. Sorry, that made me chuckle because in my head, I could hear my grandma saying, ŅOh, the sugars.Ó

[00:14:07] GM: Well, for me, for me being Greek, the word diabetes is Greek. So, most Greek parents would know what that is. But you're right. It's a Greek word, a Greek medical word, so it's difficult for somebody here. So, there's the cultural component too, that is also an important component to consider, right?

[00:14:24] MD: I had no idea diabetes was Greek. Like the word was Greek. I had no clue.

[00:14:28] GM: I would say that probably 50% of the medical terminology is Greek and 50% Latin or something like that.

[00:14:37] MD: Yeah. ThatÕs awesome. Oh, my gosh. Okay. So, what are some of the most important times and points and transitions for nerve development for feeding and swallowing that clinicians need to know about and the why?

[00:14:49] GM: Yeah, well, I would say probably some of these time points start way way before were born. And that's why I think it's really important for pediatric feeding clinician to be aware, and no embryo logical and fetal development well. As early as about four to five weeks of gestation, we have what is known as the neural tube closing, which is what will give rise to the entire nervous system and the skull. So, we're talking about a really important time point, they are very, very early in gestation.

And then the other time period during gestation that probably is highlighted as being very important, is around 10 to 15 weeks. That is the time where we know from ultrasound studies that were done quite a few years ago now, most of them led by Barbara at NIH and her group, and those early embryo logical ultrasound studies showed that around 10 to 15 weeks of gestation, that's where we start seeing many of the oral pharyngeal structures being formed the larynx, the pharynx, the tongue, and so it's probably not surprising that because of that, we also noticed that the first pharyngeal swallow starts happening around 10 to 12 weeks of gestation. So, around the same time, we see the first movement of the pharynx, and the first swallows happening.

And then I would say that also, in addition to those kinds of very, very early time points, the third trimester is when we see a lot of the neural differentiation, that means that the neurons are starting to take on their specific roles in the brain. And we also have another phenomenon known as synaptogenesis, that means that the neurons start talking to each other more. So that's another very important point that starts happening more actively on the third trimester. So, it's very important for neuro development of all systems, including swallowing. I would say that if we consider embryological and fetal development, these three would be, at least in my view, some of the most important time points to keep in mind. And then once the baby is born, of course, the first few days are also, as you all know, very well, rather tricky, because for the first time, now, the baby has to coordinate, not only swallowing and sucking that those things have already started before birth, but also breathing now is over imposed to those.

So, we have another, a third component that has to be very well coordinated and that takes a little bit of time, even in typical development, as we know. And as infants grow more, they gain more gross motor independence, they have better breathing patterns, more stable breathing patterns, and neuro physiological changes are happening, anatomical changes are happening. Another very important transition is as you all know, the transition to solid foods, right? So around four to six months of age is when we know that some anatomical changes are already starting in the neck and the oral cavity. And we know although we hypothesize, although we don't have very solid evidence, that probably neurophysiological changes are happening there as well.

So, swallowing is believed to start during fetal development and in infants as what we call an innate behavior. So, a behavior that is very reflexive, right? So, that it doesn't really require a lot of cerebral inputs, or cortical inputs in order to be fully functional. That notion, keep in mind is being challenged and I'll talk a little bit about that maybe later on. But definitely by four to six months of age, that definitely has started changing considerably. Meaning that now we are moving into more voluntary feeding, right? So, there is a lot more control from the cortex also being Ń modulating, not being, modulating the some of the brainstem responses for the pharyngeal swallow to happen. If any of these by any means is complex, let me know and I can try to water it down a little bit more.

[00:18:45] MD: No. This is perfect.

[00:18:47] GM: So, four to six months is another transition period. And then beyond that, I would say that there's further refinement of many feeding and eating skills in general, for the remaining of the childhood years. It used to be believed, and I think it's cited in many books and articles that by the age of two, or by the age of three, kids have an adult like swallow. What we have been finding out and actually through some of the work that we do in my lab as well, that even older school-aged kids, they continue to show at least neuromuscular refinement, meaning that their muscles start coordinating a little bit better when people swallow, as they get older. 

[00:19:26] MD: Okay, so I have like 400 follow up questions. The first one is, one, that's all for a typically developing child, but I am a mom of two preemies and you throw a preemie and a premature birth or all those complications in, and that throws the typical window or the typical development out the window. That's the phrase I'm looking for. I can talk, we're okay. I had coffee. And then my other thought is, I see colleagues working on children with say Down syndrome and athetoid CP or I see a lot of little ones that have flaccid dysarthria. I mean, they go on for a differential diagnosis of VPI, but come out with lesser dysarthria. But they tend to have CP. So, it aligns, because of like neural event, whether it be stroke or an anoxic event case. 

But I see two and three-year-olds that are not anywhere near, they're working on trying to get the child to do a rotary chew, whereas the developed Š I mean, can you speak to the development of a chew pattern there?

[00:20:29] GM: These are excellent questions. And that's why this is an area where a lot more work is needed, because we do not know a lot of things. And because there are so many disruptions or aberrations, like you already mentioned, Down syndrome, CP, I mean, all these different types of conditions that influence the body, and many of our systems differentially depending exactly, what is exactly the underlying cause of each one.

So, there is definitely a lot more room for more knowledge in all of these areas and all of these diagnoses. But I will say for the chewing question that you asked about the chewing patterns, we do not have a lot of work in the area of chewing development, that is what I would call high quality or very robust work. It is hard work. There is some work that was done by Chris Moore and some of that group, Anne Smith, and some of the early electrophysiologist in the field, that they tried to study to do surface electromyography. So, this is surface electrodes that basically are muscle readers to try and understand chewing muscle performance in infants, not in infants in very young Š well, I guess, in older infants, six months and above, in very young kids. And that is very hard to do.

So, I want to start with that. Because I'm saying that there is not very robust research. So, somebody will say that I'm criticizing these big seminal papers. These are very important papers, but this is hard research to do in a very robust way, right? Because to understand an EMG signal, or an electromyography signal from an infant, even from a child, a lot of times it's very, very difficult, because it is a messy type of signal. So, you have to have really, really good data collection and analysis methods to do that. But from those studies, we know that chewing patterns or what we would call a more sensitive time period for chewing is around 8 to 12 weeks. 

Again, what we're talking about typical development, whatever that means, right? So, we have to keep that in mind. Because most studies on typical development have been done. Let's be honest, in the kids of the professors who were white, and none of those things. So, not very diverse group, right? Or college students, or things like that, you know what I mean. So, we have to be careful.

[00:22:44] MD: Yes. I bring my children in for that. Yeah, I bring my kids into like Ń grad students do test analysis on them as guinea pigs and I bribe my kids with Legos. So yeah.

[00:22:57] GM: Which is great and we're very appreciative for all of the kids that come to the lab and do research. But at the same time, we do need to increase diversity in our subject pool. We know that. All of us.

So, around 8 to 10 weeks is supposed to be kind of a, I don't know if we would call a sensitive period, but a critical period where some chewing has to start at that time and then it continues to get refined until much, much later. That's what I'm saying that we are seeing refinement, way beyond the three years. We are seeing refinement even in 7-year-old and 12-year-olds, and I'm still talking about typical development. So, you can imagine there is still refinement happening until later on. That's what we're finding out.

I don't have the answer about if a kid with Down syndrome is three years old, should we be working on rotary chewing, because I think it depends on a lot of different factors. Are the gross motor skills there? Are other fine motor skills there? What is the range of motion of the tongue? There are some things that we could look as precursors to see, maybe yes, and maybe not. It really depends. But we do know that Š and it depends on the severity of the underlying disorder, significantly, right? Because it's very different and weÕre talking about Š

[00:24:05] MD: Case specific.

[00:24:07] GM: Exactly. ItÕs very case specific. But we do know that, I believe I can say that, and I don't know if you agree based on your clinical experience too, that the longer you wait to introduce, beyond the 8 to 10 weeks, the harder it is to introduce chewing effectively and functionally. Most clinicians that I've talked to, and most researchers that I've talked to, I think agree with that. 

But I would say, that critical period is important. But again, a lot of what we know about critical periods and development, which I think is highlighted by your comment as well, is based on studies that have been very traditionally looking at specific groups of kids. Most of them are not really longitudinal studies, or they're very small-scale studies. So, what I'm saying is that we urgently need more, bigger longitudinal studies and more diverse studies to really understand even typical development better and more comprehensively.

[00:25:07] MD: Yes. The only comment I have is that I breastfed both kids. And that phasic bite reflex, when they clamp down, ouch. On behalf of of all lactating mothers, ones they forcefully do that, that reflex sucks.

[00:25:27] GM: And thatÕs fully reflexing. ThatÕs fully innate and reflexing.

[00:25:33] MD: Oh my gosh, that takes me back like, six years. Oh, yeah. That's how long it's been. I will never forget that. 

Okay. Alright. So, I feel like it's my job, Dr. Malandraki to like bring Š IÕm your comedic side kick for the hour. How about that?

[00:25:47] GM: Yeah. Okay.

[00:25:49] MD: Do you have other top seminal studies or findings? I mean, like, do you have others that stand out to you that are just like, everybody go get your hands on this paper and read it.

[00:25:57] GM: That's a hard question, because there are so many. So, I would say, especially if you are treating infants, I would say some of the earlier ultrasound studies by Barbara Sonys and Jerry Miller group are much to read, because I think it really brings down exactly what's happening in fetal and embryological development. And again, talking about this time periods that I talked about, again, small scale studies, but rather important.

Early work by Chantal Lau that talked about the five primary stages of sucking, and really get us started thinking about how the complexities of sucking behavior. Again, that's an innate behavior, but it does mature. So, we need to be aware of that. Work on breathing and swallowing coordination by [inaudible 00:26:45]. And I'm happy to also send you some of these references for people who may be interested. These are all kind of earlier, earlier studies, I'm talking about 1990s, 2000s, like pretty early studies.

I will say that from a neuro physiological standpoint, a group of studies that to me really started being very revealing about the role of the brain, because I think that's one of the biggest misconceptions about swallowing, that swallowing is a reflex. We used to learn that in grad school. We used to read it in books. ItÕs still in some medical books, that even the pharyngeal swallow is a reflexive behavior that itÕs populated at the brainstem, right?

[00:27:27] MD: That's exactly what I was taught, central pattern generator.

[00:27:29] GM: Well, yes, and this is a central pattern generator that is very important. That's still true. The central pattern generator at the level of the brainstem is very important to elicit a pharyngeal swallow. But we now know mostly from adult focus to work first, that the cerebrum, the cortex and the subcortex have some modulatory, providing some modulation to that CPG to that central pattern generator. And if that is gone, then even the pharyngeal swallow may be problematic, so that's why we see stroke patients with right hemisphere or left hemisphere strokes with a functional brainstem, no damage in the brainstem that still have pharyngeal dysphagia.

So, we know from those clinical studies and from neuro-imaging studies that we have done that cortex is important for adults. For infants, and even for fetuses, some of the first evidence that showed that, yeah, maybe swallowing is more innate in the infant, but wait a minute, the cortex may also be important. Were those studies that included babies, fetuses with anencephaly. Anencephaly, for those of you who don't know, is a congenital condition, that basically means that the cortex and sometimes the sub cortex is not fully developed. So, these kids may be missing complete hemispheres or maybe missing subcortical structures, or maybe even missing some brainstem structures in the cerebellum. And from those studies, again, very small scale, but they were very revealing because now you have babies, fetuses, that are born prematurely, of course, who do not have a cortex, or do not have a sub cortex, but they do have parts of the brainstem.

So, you would expect that these babies are able to breathe, because breathing is also controlled by a CPG in the brainstem, are able to suck, because sucking is also controlled by a CPG in the brainstem, and are also able to swallow, right? Or at least in the pharyngeal swallow. Well, most of these babies, unless there is some cerebral tissue preserved, they can't swallow. They canÕt elicit a pharyngeal swallow. Most of them can breathe, very few of them can suck. But if there is no any cerebral tissue preserved, then most likely they won't be able to swallow. And of course, they usually don't survive. As you probably know. Those of you who know about these kids, right?

So, that was, to me, a very seminal set of studies that showed that the brain is very important from very early on. And this explains I think, a lot of what is happening and all of the push from many researchers and clinicians to look at an infant guided or coregulated type of feeding approach and that makes total sense. If the brain is so early on involved, then we're talking about more neuroplasticity. Babies already have more neuroplasticity than we do. But then we we're talking about even more ability to change, ability to recover, ability to do better, ability to learn, based on the environment. 

So, that's why I truly believe, although we still need the hardcore evidence, but I truly believe in that infant driven and coregulated feeding approach, and we do need more data. But it makes sense, physiologically, the data would be very, very important.

[00:30:42] MD: Okay, so I have to ask the question that everybody's thinking, and I have my own very, very biased opinion on this. Full disclosure. I think you and I talked briefly about this, but I am not a fan of cutting people's tongue ties, because of the neuroplasticity. And I've had a call, I've talked with a couple of pediatricians and EMTs, and I've seen when it goes awry. And there's one pediatrician here in our hometown, adopted hometown, but hometown now, who specializes in working with medically fragile infants and toddlers. She was like, "When people go in and cut it that early", she was like, "The brain is still learning these patterns. And you have to give them time and work on positioning and pacing." And I was like, ŅYes.Ó And that's my take. But do you have an opinion, a very important educated opinion on this?

[00:31:42] GM: Yeah, well, I will tell you, I want to be very honest about this. I don't know as much about it. I've seen that is becoming very popular and I have tried to read the evidence behind it. And truly, the evidence that I have read is not persuading me. So, I tend to agree with you. But at the same time, it's not a topic that I have delved very deeply in. So, I want to be very honest about it.

I do, from talking to colleagues, some MD colleagues and some other pediatric SLPs, as well, my understanding is that there may be a time and place for that for a specific child. But I don't know that anybody truly knows the optimal window, and all of that. But I would agree with you that, especially at those very early stages, I donÕt know if you're talking about like newborns, but if we're talking about those very early stages, I would be extremely cautious with anything as invasive as something like this, personally. Based on what I know. But again, I want to be perfectly clear that it's not something that IÕve delved very deeply into the literature.

[00:32:44] MD: But you hit it for me with the neuroplasticity. That's the piece. Both of my babies were preemies and it took them a couple of weeks to get the rhythm and the rate of it. But I had a 35 weeker and a 36 weeker after having labor stopped multiple times in bed, rest and hormones and blah. But it took time.

If you were looking for a quick fix in the world of pediatric feeding and swallowing disorders, this does not exist, we're in it for the long haul. So, give yourself grace, give your patients and caregivers grace and go at their pace.

[00:33:20] GM: Yup. That's why we're talking about that infant-guided approach and that's absolutely correct. That's what I believe as well. Just for the sake of completeness for the question, because you asked me about studies and I think I want to also mention a couple of authors and studies at the later stages. So, I think, as we're talking about infants growing and what do we know about sensory motor development, I do want to mention that work by Goldfield and Emily Zimmerman that really use what is known as a dynamic systems theory approach. 

So, an approach where we are looking at multiple systems and how they interact, for development to happen. I think these are also very, very good papers for somebody to read. And of course, I think I would be unfair if I didn't say that the paper on motor learning approaches for older kids by my very good and late friend, Dr. John Shepherd, was also another paper that I think from a feeding therapy perspective was very influential, at least in my thinking. 

Those are some. As I said, there are many more and I'm happy to send you kind of a list of some of the papers that for example, the list of papers that I give to my pediatric feeding course, students as kind of like seminal papers that they need to read before they have their first placement or something like that. So, itÕs helpful to people.

[00:34:33] MD: I would love that and I'd also love to share it with my students if possible.

[00:34:38] GM: Yes, absolutely. Yup.

[00:34:40] MD: That would be great. One that I go back to is the PFD consensus paper that feeding matters and colleagues, they did the work, the immense amount of work such that we can have the new arc code for PFD come October 1. So, it clearly explains the four subcomponents of what a true pediatric feeding disorder is. I have used that to explain why it's more than picky eating for the older children, to pediatricians that may not have been in the know about PFD, especially when I'm working in more rural areas, or lower socio-economic areas. The pediatricians may just not be aware of it.

Again, remember that when you're engaging in interprofessional practice, you have to do your part for interprofessional education, and recognize that feeding and swallowing, our pediatricians may get one night embedded in all of their medical work, and then they go out and do their rotations and their residences and they may or may not see it until a case comes to them, like as an actual practitioner. So, you have to reach out and educate the colleagues and the caregivers that are taking care of your patients, not just the caregivers that are the parents, but the other interprofessional practice partners. So, take the research, absorb it and then share it because that's where you're going to bridge it. That's where you're going to break down the barriers. So, okay.

[00:36:13] GM: Yeah, absolutely. There's so many more, but I'll send you the list. I want to make sure I'm fair to many great colleagues that are out there. So, I'll send you the list of that people have it.

[00:36:24] MD: Thank you. Yes. Okay. So, this is the part I'm super excited about. Talk to us about your current research, ma'am.

[00:36:31] GM: Okay. All right. Yeah. Well, yeah, so I can definitely talk to you about that. So, in recent years, it was in the last about eight, nine years, what we have tried to do is we have tried to focus our efforts on a group of children that we kind of use, use the word use in quotes, of course, as a model to better understand the nervous system development for feeding and swallowing, and to learn more from them, and that's a group of children with unilateral cerebral palsy, or unilateral brain involvement.

So typically, this type of involvement, is an involvement where predominantly one hemisphere is impacted, primarily at least. And therefore, we believe that it offers a good model to understand early brain reorganization, especially for things like swallowing that is a bilaterally integrated function. So, if you look at neuroimaging studies of adults that swallow, you will see that both hemispheres are active when the swallow happens, both sides of the brainstem of the CPG are active when we elicit a pharyngeal swallow.

When one hemisphere is damaged, or lesioned, hopefully we can better understand what are those neuroplastic, what are those changes that are happening at the brain level or at the muscle level that helps some of these kids develop fully functional swallows, and some of them not so much. That's the group that we have been focusing on the past few years. And now I have a really talented PhD student, Rachel [inaudible], who is also interested in adding to this work through studying neuromuscular development, even in typical development. And from some of her work, we're finding out what I said earlier about the continued refinement, even in typically developing kids, even later in school age years.

That's the main populations we are working on. So, we're working right now with school aged kids with unilateral cerebral palsy and typical development, and we're using what is known as a multi-level approach, which means that we are investigating not just the feeding behaviors, but also what the muscles do. So, we use surface electromyography to look at the muscles around the lips, the muscles in the sub mental or under the chin area. When somebody swallows different consistencies and volumes. And then we also look at the brain. We do brain MRIs and functional MRI studies in order to see what's happening at the brain level.

[00:38:57] MD: Can I ask Š

[00:38:59] GM: So, thatÕs the canned research. Yes, go ahead.

[00:39:01] MD: When you're giving, is the child feeding themselves? Is the caregiver feeding them? Or is there like a control bite sip size around the viscosities?

[00:39:11] GM: When we are doing the feeding observations, the children are feeding themselves, but those are kids that can do that. Not all kids can do that. So usually kids with unilateral brain involvement, they can still feed themselves, most of them. I would say not most, all of the kids that we have in our paradigms can feed themselves and they do that. For the electrophysiology studies, though, because we have to Š in order for us to make meaningful comparisons between kids, we have to control the volume, the consistency. They're still feeding themselves, though. So, they're still feeding themselves, but we have to control the volume and consistency. But that's a very good question.

And then in the MRI component, we're actually only looking at structural MRI. So, looking just at the anatomy of the brain. Or when I'm talking about functional MRI, I'm talking about resting state functional MRI, which means that they're just resting, and we're looking at activations at rest. We're not feeding them in the magnet, because we have tried that and it's extremely hard to do. So, it's not very physical when you're using MRI experiments. So, that's what the paradigm looks like.

[00:40:21] MD: I'm just thinking of the poor lab tech that had to clean up after that attempt.

[00:40:27] GM: Yeah, can you imagine? Yes. And I will tell you these are not easy studies to do. They take years to collect the meaningful and the adequate number of data. But they're definitely worth it, because this is a population that is extremely understudied. Believe it or not, and it's already teaching us a lot that I think we can probably use for other populations as well.

[00:40:49] MD: That's awesome. My brain is firing in 14 different directions. The ADD has kicked in, Dr. Malandraki. How do we bridge this? What are the findings thus far? And how was that shape into into my world? Are they presenting within the Ń CP, is it an increased tone? Is it low tone?

[00:41:14] GM: Yeah. Those are great questions. So, number one, let me start with the last part of your question. First, in terms of what tone, so most of these kids are diagnosed by a neurologist with spastic CP. Now, I want to caution clinicians here, because when neurologists give this type of designation, they really are focusing on the limbs. They're not focusing on the bulbar system on the head and neck.

So, what I have seen based on the work that we've done is that actually, kids could have different types of tone, different type of tone in the limbs, and in the bulbar system. ThatÕs very interesting. Now, spasticity also is very hard to diagnose in the bulbar system. We don't have very good ways other than examining a couple of reflexes. Real spasticity is very hard to identify in the bulbar system, it's much easier, and that's why I think they do it for the limbs, it's much easier to identify with the limbs with very small and quick tests that they have, and they can do. 

So, that's one thing to keep in mind that sometimes even if a kid is labeled athetoid, spastic, or you know, whatever the tone classification is given by the MD, I'm not saying that's wrong, that's correct. But itÕs usually focusing mostly on the limbs. So, keep that in mind, because that may not be the same for the bulbar system. So, you may not see that same tone and even if you think you do, it's very hard to diagnose it. Extremely hard. So, keep that in mind. And that's why I usually avoid these terms for the bulbar system. I try to describe what I see. But I avoid saying as the spasticity on the tongue or something like that, because there is no definitive way to evaluate that. Or if somebody discovers that, that will be fantastic. But it's really hard unless you do probably invasive needle-based EMG. It's very hard to do. So, that's one thing to keep in mind.

So, although most of the kids that we have in our part of them are labeled spastic, I would say that for the bulbar system, we do see kind of a mixed pattern for most of these kids anyway. So, what we're finding and how does that translate? So, first of all, we're finding that even kids with unilateral CP, which was not believed to be the case, I believe, before we started coming up with our studies, have some feeding Ń some clinical feeding and swallowing issues. Now, they tend to have a range of issues, meaning that you may as I said earlier, you may see a kid that has pretty functional swallowing, that has unilateral CP, and then the next day you see another kid that actually has a severe feeding and swallowing issue that needs an instrumental assessment.

So, we have seen quite a bit of a range. Most likely the range is mild to moderate. But we have seen a couple of cases that were pretty severe, which was really, really interesting. So, that's one thing. So, keep in mind as clinicians that even when you see kids with unilateral CP, for example, in the schools, because these are all Š weÕre talking about school aged kids, 7 to 12-year-olds are the group that we are studying right now, for example. Don't assume that they don't have any feeding issues right away. So, make sure that you pay a little bit closer attention even to those kids. That's number one. Another thing that we're finding is the type of lesion in the brain and when the lesion happened, can probably be predictive of the feeding and swallowing problem later on in life.

For example, the kids and the research that we published on this says that kids typically have strokes that affect the cortical area of the middle cerebral artery. So, the sensory motor cortex, those strokes happen usually around birth, so perinatally, or immediately after birth, or immediately before birth, like around that time. At the end of the third trimester, basically. Those kids somehow are able to compensate really well, and they will develop pretty functional or milder or if they have any issues, they will be milder. The kids that have more problems are typically the kids that have lesions that we call them periventricular, which means they are in the white matter and the gray matter around the ventricles. So, centrally in the brain, where the basal ganglia are, the thalamus, the white matter areas that connect the cortex with the brainstem, so the pathways have been disrupted. Those kids tend to have a bit more severe issue. And those types of lesions usually happen at the first or usually second trimester.

We already know that there is, from early on, depending on when the lesion happened, if they can tell you that, if they can tell you that, that can actually help you kind of predict some of the later behaviors or feeding or swallowing. So, there's some predictability that could probably come into play there. And the other thing that I want to focus on that it has treatment implications, direct treatment implications, I believe, is that what we are seeing for the kids with unilateral CP, even the kids who have functional swallows. 

So, even those kids, when we look at their muscle activity, the muscle activity around the lips, and in the sub mental muscles, so the muscles that move the hyoid bone, basically. These muscles compared to age-matched typical developing kids are way over activating during the swallows. For example, when you swallow, the muscles under your chin, these have the hyoid bone muscles, you expect them Š the super hyoids, you expect them to be active. But actually, even the peri-labial muscles are active in these kids. 

So, what we are seeing, and this is we just presented that at DRS last March, and we are just writing up the paper. So hopefully it will be out for you guys to read soon. But what we're seeing is that these kids do not know how to isolate muscle activity very well, how to isolate it to the muscles that it needs to be targeted, and they're activating them more. So, that means that they're expending more energy than even typically developing kids.

[00:47:09] MD: They're burning more calories.

[00:47:10] GM: Probably, yes. And that was actually something that was hypothesized for many years that that may be happening. But we actually have now the solid evidence to support that it is happening. So, what does that mean in terms of treatment? It means that instead of trying to improve range of motion or strength, that usually those two are kind of like the go toÕs, for people, right? The oral motor exercise and doing that, maybe here, we actually need to develop programs and systems that will help us with better coordination. And with reducing the activation, because these kids, they're not that they're not strong. Actually, we compare tongue strengths between them and typically developing kids and they are equally strong. They're very minimally probably less strong than them in terms of their tongue strength.

So, it's not a strength issue. They're not over activating because they're stronger. No, they're not over activating, because they're spastic because spasticity would be a tone issue, it wouldn't be during function, right? They're over activating, because somehow, they cannot coordinate. We don't know why exactly where from the brain that originates. That's a next question that I think will be very important to answer. But I think at this point, since we know that there's something off in the neuro muscular development, then that gives us a potential new treatment target. So, the role of how the muscles work and what do we need to do with those muscles to make the swallows more functional, is something that we will be working on next. But an idea is maybe hold off on those standard oral motor or range of motion or strengthening exercises and try to think of, can I improve the skill? Can I have them activate less?

It won't be easy, especially with kids that don't Š those types of treatments and required biofeedback? So, it won't be easy for kids that don't have good cognitive function, or you can't communicate very well with them. But it's another direction that we should be looking at and now we have the physiological evidence to say so. Does that make sense? I hope it wasn't too Š

[00:49:12] MD: No, it was absolutely perfect. And if you were here, I would hug you. Thank you so much. Yes, and a mic drop. My overshare moment, my brother in law has cerebral palsy and autism and cortical visual impairment and microcephaly and a whole host of other things. And as you're describing it, I'm watching him eat in my head at 43 years old. And it makes so much sense, because he has Š itÕs low tone, but it's kind of mixed the way you describe. 

He's got spastic jerky movements when he goes to reach for things, heÕll overshoot. His cases very unique because you just have a truly known causal factor for what happened during the second trimester. But it makes sense and thatÕs why we've got to get back to making therapy functional. And your explanation on stroke location, this is why we have to know the etiology. So, if the patient's new to you, and the parents say, well, we had a stroke, in utero, or complications during birth, get those records, no matter how long it is in between.

[00:50:23] GM: I completely agree with that. 

[00:50:25] MD: Yes. And one of my hardest struggles is here in South Carolina, and I mean, I can only speak for my state. In the world of early intervention, we are told through the state early intervention program, that it is academics that we're working on, because it's IDEA Part C. So, the way the statewide computer program system is run, we don't automatically get referrals from the physicians or from the doctorsÕ offices that include medical records. 

I mean, honestly, hell, I have to struggle weekly, to get access to the pediatrician, to get them to return phone calls, to get medical records, to even get a glimmer of what's going on with our patients. And that's status quo for most practitioners. I mean, we get them eventually, bang on the doors enough, and actually, I go and I bring everybody, donuts and cookies, and that helps me get medical records. That's a huge barrier on the clinical side, is just an accessibility to basic documents.

[00:51:27] GM: Absolutely. It is. I know that it wasn't Š a lot of people say, ŅWell, does it really matter that I know?Ó I personally believe as you probably can understand that, yes, it does matter. But it is important to know what child may have more ability to recover versus less, but I think it is also important for parents to understand. And a lot of times, I find that we are the ones that are explaining some of these things to the parents, because many times physicians may not have the time to spend with the parents, or when the physicians first introduce the stroke, for example, or whatever event happened. It's such a traumatic event for the parent that they don't even Š they block other words, probably. They don't even remember.

So, a lot of times I find myself even through a research to be explaining to the parents, so this is what's happening and this is where the lesion is. I will tell you, and this is something and I frequently say when I speak about these kids is what has surprised me is that a lot of these families, in order to participate in our research, they traveled from all over the US. They were willing to do that. We don't have money to pay all their travel expenses, we give them something but it's not enough to cover all travel expenses, but they still come. 

And one of the reasons they come is because they want the brain MRI of their child, because they don't have one. Some of these kids are diagnosed as unilateral CP without ever having received a brain MRI. It's really like mind boggling. I don't understand it. And of course, now the standards have changed. Thank God. So now, of course, that is part of what needs to be in place in order to be diagnosed.

But I think until relatively recently, that wasn't the standard of care. I have parents who for the first time see the brain of their child, which is drastically different than a normal development brain than a typical kid brain, and they cry and we cry together because they tell me, ŅNow I understand my kid. Now I finally understand.Ó So, the parent and the clinician, needs to understand what they're dealing with. So, if you look at some of these brains, it's very clear that these kids are heroes, are really overcoming something that adults with similar leaders would probably never be able to overcome, because of neuroplasticity.

So, I think it is important to better understand and to have access to as many medical records as possible. I know, pediatric feeding and swallowing, it takes so much time to call people, to try and get the records. So, I admire all those of you that are in the trenches and are doing this work and I know it's it's hard work, and it definitely doesn't Š itÕs not paid enough, for sure. But itÕs so important Š yeah, definitely. But I canÕt change that. Unfortunately, I don't have any power. But I would if I did. 

But I think it talks to definitely getting access to these records, but also, for you to be able to understand the information well, make sure that you acquire the knowledge too, because that's another gap that I see sometimes in clinical practice.

[00:54:27] MD: Yes. Oh, yes. And that's why we do this because we have to know and grow. Oh my gosh. Okay, so please come back, because I want to know more about the next big research area and Š

[00:54:41] GM: Sure. Yeah, of course. Maybe I'll bring my PhD student with me next time, because she will be a great person to talk too as well.

[00:54:49] MD: Yes. Let's do that. I honestly one day, dream goals, I want to get my doctorate but we got tiny humans and they're expensive. So right now, that's in like the 10-year budget, not the 5-year budget.

[00:55:02] GM: I hear you. It's not easy it is. It is the one investment. So, I highly recommend it for anybody who wants it. But I know you have to want it really badly. I know that. You have to be very motivated to do it, because it's not easy to do, for sure.

[00:55:16] MD: Thank you. You and your colleagues are making it better. That's what drives what we do. I tell my sweet little graduate students every Thursday morning at 9 AM, when we are working on our clinic class, "Remember, etiology drives the plan of care, and the etiology drives the plan of care that drives your goals and that drives the treatment." And if it's not functional, then we need to reassess. Because you've got to know where you started to know where you're going to end, or at least have a hypothetical ending, right?

[00:55:52] GM: Absolutely. Absolutely.

[00:55:54] MD: Yes. Okay. Goosebumps. Okay. So, Dr. Georgia Malandraki, if folks want to learn more from you, where should they look and how can they reach you?

[00:56:02] GM: Yeah, well, first of all, they can always feel free to email me. My email is my last name. So, malandraki@purdue.edu. If they Google Purdue I-EaT Lab, they should be able to find I think it will be the first link that comes up on Google, our lab website that includes many resources as well. And also, they can follow us on social media. We have, again, type in Purdue I-EaT Lab. We have Facebook account, we have an Instagram account and a Twitter account so they can hopefully find us in all these domains, or they can directly email me.

[00:56:37] MD: Purdue I-EaT Lab. I just found you on social media. Huzzah. Everybody that's out there. Thank you so much for joining us today. We love it when you follow us on Instagram @firstbitepodcast. And please be sure to check out my new book, Chasing the Swallow, which is also on Instagram @chasingtheswallow. And don't forget to check out the First Bite Facebook page. We love the feedback. We love it when you make requests for guest speakers and topics that drives, brought us to today too. And we're always extra appreciative when you leave a review of Chasing the Swallow on Amazon and of the First Bite Podcast on Apple Podcasts.

So, everybody, thank you much, and I will see you all at ASHA in a couple of months.

[DISCLOSURE]

[00:57:28] MD: Hey, so it's Michelle Dawson here and I need to lay out by disclosure statements. So, if you ever wondered how bad my ADD, ADHD and lack of sleep, Monday through Monday, actually as well, here you go. These are my non-financial disclosure statements.

I volunteer with Feeding Matters. I'm a former Treasurer with the Council of State Association Presidents and a past president with the South Carolina Speech Language Hearing Association. I am a current member of both ASHA and [inaudible 00:58:02], and for this year for 2021 I volunteered for the Pediatric Feeding Disorder Planning Committee for the ASHA 2021 Convention.

My financial disclosures, okay, all right, so I receive compensation for First Bite presentations as well as Talking Teletherapy and Understanding Dysphagia from speechtherapypd.com. I also receive royalties from speechtherapypd.com for ongoing webinars that I have on their website, as well as compensation from PESI Incorporate for a lecture course and webinar that I have on their website, as well. 

I am coordinator for clinical education and clinical assistant professor for the Masters of Speech Language Pathology Program at Francis Marion University in Florence, South Carolina, for which I received an annual salary. I also received royalties from the sale of my book, Chasing the Swallow: Truth, Science and Hope for Pediatric Feeding and Swallowing Disorders that I self-published and is available on Amazon. And I do receive royalties from the accompanying 13 and a half hours CEU for the book from speechtherapypd.com. So yeah, I stay pretty busy, but those are my financial and non-financial disclosures. If you ever have any questions, please feel free to reach out. Thanks you all. Bye.

[00:59:37] GM: I would like to disclose that I receive salary from Purdue University, and that some of the work that I will be discussing today has been funded by a grant from NIH and the NIDCT Institute, as well as by a grant from the American Academy of Cerebral Palsy and Developmental Medicine and the Pedal Speech Foundation. Also, the College of Health and Human Sciences at Purdue University has supported some of this work. These are my financial disclosures.

Non-financial disclosures, I am an ASHA member as well as an editor for the American Journal of Speech Language Pathology. And I'm also a board member, the current President Elect of the Dysphagia Research Society. Thank you

[END OF INTERVIEW]

[01:00:19] MD: Feeding Matters, guide system wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. So, what is this Alliance? The Alliance is an open access collaborative community focused on achieving strategic goals within three focus areas, education, advocacy and research. So, who is the Alliance? It's you. The Alliance is open to any person passionate about improving care for children with a pediatric feeding disorder.

To date, 187 professionals, caregivers and partners have joined the Alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together.

[OUTRO]

[01:01:12] MD: That's a wrap folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble, but yet sassy host, Michelle Dawsom, the All Things Peds SLP.

This podcast is part of a course offered for continuing education through speechtherapypd.com. Please check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[END]


FBP 157		Transcript



	©Ź2021 First Bite Podcast	26