EPISODE 231

[INTRODUCTION]

[0:00:00] MD: Happy Pediatric Feeding Disorder Awareness Month, everyone. Can we shout that from the mountain tops? Happy Pediatric Feeding Disorder Awareness Month. I canÕt think of no other way to share my gratitude than to open this episode up with, we're here today because of Feeding Matters. We're here today, because of interprofessional practice. We're here today, because the leaders in interprofessional practice first started out as students, as residents, as clinical fellows, as they sought, thought, and deep-dived into interprofessional education.

Pediatric feeding disorder is more than a silo clinician can carry on their shoulders. We have to be open to the unknown. We have to be the swallow detective. Y'all, today's guest is none other than Barbara Coven-Ellis. She is also known on Instagram as @slp.swallowdetective. I love her private practice. ItÕs Chasing Unicorns. Because that's what we do.

With my whole heart, I hope today, I hope every episode this month fills you with the zest to go be a swallow detective, to go chase these kidsÕ unicorns, to find their narwhals, to work collaboratively. Barbara, thank you. Feeding Matters, thank you.

[EPISODE]

[0:02:00] 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 guest 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 and joy to the pediatric clinician, parent, or advocate.

[0:02:47] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[0:02:51] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:56] EF: Ethics on how to run a private practice.

[0:02:58] MD: Pediatric dysphagia to clinical supervision.

[0:03:02] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[0:03:11] MD: To break down the communication barriers, so that we can access the knowledge of their fields.

[0:03:16] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[0:03:20] MD: 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.

[0:03:32] EF: Every fourth episode, I join them. 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 new-ish clinician with experience in early intervention, pediatric acute care, and non-profit pediatric outpatient settings.

[0:03:52] MD: Sit back, relax and watch out for all hearth growth and enjoy this geeky gig brought to you by speechtherapypd.com.

[INTERVIEW]

[0:04:07] MD: Okay, everybody. I am absolutely honored and humbled to kick off Pediatric Feeding Disorder Awareness Month for 2023, with none other than the author of Tyler Takes a Taste: A Boy and His Family's Journey Through "Picky Eating" and Feeding Disorders by Barbara Coven-Ellis. If y'all don't know her, I would highly recommend, I'm going to go ahead and do it now, checking her out on social media. She's @slp.swallowdetective. She's genuinely just a beautiful human and a beautiful soul and she just gets it.

Honestly, Barbara and I met years ago when she reached out through social media and she offered to send me her book. I got it and I loved it and then I bought a second one, because I got it off of the Amazon. The Amazon. I kept it at the clinic for the students to read through and it's all about a little boy who faces his fear and he takes a taste. Sometimes that's the biggest hurdle is overcoming that first step for our little ones with pediatric feeding disorder, because they have such ingrained trauma that that first step is the hardest one.

If you're looking for a beautiful way to honor this month, first and foremost, go support Feeding Matters, huzzah, because that's what we're here for. Thank you for Pediatric Feeding Disorder Awareness Month. Then go pick up a copy of this book and add it to one of your resources. Also, Erin and I Ð this is fabulous. Erin and I were walking down a rainy cold night in November in New Orleans and all of a sudden we hear, ÒMichelle, Erin.Ó I'm worried about getting mugged, because it's New Orleans and we turned around and it was Barbara. I started squealing and Erin's like, ÒWhat the hell is going on?Ó It was perfect and we got a rainy, cold, wet selfie and it was amazing and wonderful and delightful. Barbara, thank you for shouting and flagging us down and meeting in person. Hi.

[0:06:19] BCE: Hello and thank you so much for inviting me. Oh, my gosh. I'm just so honored to be here. I was afraid that you were going to think I was a mugger. I was like, ÒNo, no, no, no, no, no. I'm an SLP.Ó

[0:06:36] MD: Well, like the night before we had been not to sketchy Bourbon Street, but just shy of sketchy Bourbon Street. Somebody drove down downtown and had the gun that shoots the water beads, and we all got shot with water beads. Like, what you didn't know is that we were already hyper like, ÒOh, my God. We're going to die in New Orleans, because we've been shot with the water bead the night before.Ó I was like, ÒWe're fine. This is fine.Ó

[0:07:07] BCE: Then this lady, this crazy lady flagging down.

[0:07:11] MD: ItÕs great. Oh, my God. The things that happened at ASHA. Huzzah.

[0:07:18] BCE: IÕll use my goal at ASHA. Believe it or not, my goal at ASHA was to meet you. I was Ð well, no, I have to be honest here because I Ð and I told you this before, I'm a total girl fan. Your seminar changed my Ð when we practice completely, a 100%. Way back. I saw it when you first made it. Just getting that whole picture of the kids and understanding GI, it took me down a rabbit hole with GI that I am still exploring. It had never occurred to me, things like constipation. What? How could that be?

Once I took that class, it just changed everything. I've been following you in a way. I mean, I feel like, ÒOh, my gosh. I hope she doesn't think I'm stalking her.Ó A couple of years ago, so I had a student, right? It was my errand. She knew social media. I don't know social media. I wish she was still here for me, because maybe she'd be able to catch me up on it. Serena, I love you dearly. One day she came into the clinic and she says to me, ÒHave you listened to First Bite?Ó I said, ÒWaa.Ó She said, ÒIt's a podcast.Ó I go, ÒI don't know what a podcast is. And you have an iPod.Ó

She goes, ÒNo, no, no. You donÕt need an iPod.Ó She set me up. We set it up on my radio and blah, blah, blah. Anyway, so I started listening and going, ÒOh, my gosh.Ó Because you had this stuff on allergies and all of that. That got me down another rabbit hole, which I just adore. Anyway, I am a long-time fan, so I can't believe I'm on this thing.

[0:09:19] MD: Oh, my God. Thank you. Erin says I need to learn to take compliments well and not go self-deflecting, self-deprecation humor. This is my MO, so thank you. Thank you.

[0:09:35] BCE: I know that MO well.

[0:09:36] MD: Yes. Yes. Also, it's funny to me how richly blessed this has been and how many faux pas I've made, thinking that I'm using the right word that's culturally in the trend, right? I think, my biggest one, and I can say it now and own it. One time, I was like, ÒYeah, FOMO. The fear of missing out.Ó But I said FUPA instead of FOMO, and I will never let that down. I mean, you live and you learn, and then you know that there's Ð that yes, so much Ð

[0:10:08] BCE: You meant FOMO, but you said FUBA?

[0:10:10] MD: I said FUPA, which means something totally not a FOMO. Like, oh, do the Google afterwards. Don't do it now. Thank God for students making us aware of things larger than us. Yes. Yes. Oh, my God. Also, this week, Goose came home from school and he goes, ÒMom, what is sus? They said sus, like something was very sus.Ó I was like, ÒI have no idea what that means.Ó Then I got worried, like what is he hearing at school? Then Bear, the little one, he goes, ÒYou people are not cool. It means suspicious.Ó I was like, ÒOh, I'm glad that our eight-year-old could translate that for us.Ó Yeah. Yeah. I digress.

Okay. Folks, we have to talk about you, Barbara. Because you're an actress and then became a linguistics major with concentration in neurology and then a speech pathologist with a concentration in neurology. Yet, you work in rural Washington and have to do probably all of the above. Also, is it beautiful there? Is it really rain there as much as I think that it rains there?

[0:11:22] BCE: It does. It does.

[0:11:24] MD: No.

[0:11:26] BCE: Our summers are amazing. Our summers are truly amazing. But the rest of the year, if you have SAD, which I admit that I have, it is not fun.

[0:11:37] MD: Yes. SAD, folk, stands for seasonal affect disorder. Yes. Yes. I am intimately aware with the SAD. Okay. How did you become a speech pathologist?

[0:11:51] BCE: Oh, boy. Very roundabout. As you said, I was an actor, an actor/singer. I started singing at weddings and church services, special services and things like that as a teenager. I just fell into keep going with that when it came to college. I started out with singing and stuff. Long story short, I ended up going into more of the acting than the singing. My first husband, we ended up moving to Michigan after living in LA for five years, because he decided he wanted to go back to school and that's where he was from.

I spent 30 years in Michigan, or, well, 25 years in Michigan as an actress doing stage, film, all sorts of everything. How did I get to this? What ended up happening was my daughter. I went back to school, because I hadn't finished my bachelor's. My daughter was of an age where she needed to be in a preschool while I was at school. This one particular university had a developmental daycare. They are on the campus and a preschool. Then even, it went into kindergarten, because they have Ð that's one of their programs. You've got your students in there, plus the teachers, so it's really cool. The kids get a really good job.

One of the classes I had to take was, I had the choice of either I had to get those basic things done. I had to either take a year of foreign language, or I had to take a linguistics course, the intro to linguistics. It was just one semester versus two. I went, ÒOh, I'm taking the one-semester course. I can make it through anything. Oh, this is going to be horrible, but I'm going to do this.Ó I fell in love. I loved the linguistics course. Oh, my goodness. I couldn't believe it.

At the time, my niece had recently been born and she was Down Syndrome. I was looking at all this stuff and I'm going, ÒOh, my gosh. I need to learn more about when language is different, when kids are different.Ó I started taking more courses and then I ended up with a minor in it. Then they asked me and they Ð because I was starting to tutor students and they said, ÒYou need to be a grad student.Ó I went, ÒWell, look at that. My daughter can continue on in this school and she can go another year and then into preschool and I get my master's.Ó

I did all of this master's work, but then a divorce happened, just as I was out to finish my master's work. Rather than do my paper, I went to a job, so that I could pay the bills for my daughter and myself. I never got to finish that master's degree. I have two years of all this grad work, but no master's degree. That went on to the back burner for years. I kept working as an actor with some straight jobs on the side. Then I got bored.

I started looking around me and I started feeling very much like I needed to give back. I felt very Ð oh, I can't even think of the word right now. I just needed to give back. I decided I needed to go back to school. I started asking around. I thought I'm going to be a PT, okay, because I've always been an athlete. I thought, I'll go back to PT school. I asked a friend of mine who's a PT Ð

[0:15:50] MD: Sorry.

[0:15:51] BCE: She said, ÒBarbara, you're of an age where you need PT. You do not want to be slouching through life.Ó Megan, thank you for that. She said, ÒWith all of your background and with your acting and everything else, why are you not looking at speech pathology?Ó I said, ÒI don't want to work in a school.Ó She goes, ÒNo, no, no, no. How speech pathology, there are places that really need you.Ó She's in rural Washington on the other side of the mountains. I went, ÒOh. Well, I'll check it out.Ó

Basically, what I did is I did my GRE stuff. Then I applied and I said, ÒWell, if they take me, it was meant to be. If they don't, it wasn't.Ó They took me. That was the beginning. Once I started the journey, I was just head over heels in love with it and I have never looked back, other than every so often, I'll look at my PT colleagues and I'll go, ÒI want to be you. Can I be you and you and me together, because I want to do all of that body stuff, too.Ó

[0:17:02] MD: Perception. Hold on, Perception-Action Approach. You need to pull it up. You need to see it. I will text it to you. Perception-Action Approach. Actually, wait. The podcast episode came out two weeks ago, four weeks ago on April 5th that episode came out. It is Cuyler Romeo, who's the OT with Feeding Matters. Her and a PT, Charlene Fregosmi. Fregosmi. Yeah. I got to put that SZ combo in it. They created this and it is literally how you overlap OT/PT speech and actually cue the body into movement. SLPs can get trained and get a certificate in this course. Yes, yes, I know, I know it's amazing. It's on my bucket list. Yes, sorry. Connecting the  dots on my head.

[0:18:02] BCE: Perfect role.

[0:18:04] MD: Yes, perfect. Yes. But you're right. That's just you hit PFD on the head. We can't just do the one. We need the OT. We need the PT. We need their knowledge in order to assess these kids. Okay, also what side of the mountain are you in Washington? Are you East, or West?

[0:18:26] BCE: Okay. Well, there's more than one set of mountains in Washington. There are two mountain ranges here. There's the Cascades and there's the Olympics. If you were to make Washington into a fist, okay, the peninsula here Ð youÕve heard about the fairies with Washington, yeah, I live on the peninsula. This is where the Olympic mountains are. This is rural. People from Seattle come across on a ferry to come here. Yes, they can drive around and come up, but most of them come across on a ferry.

Then we have islands in here, the San Juan Islands. Some people live on the islands, too. One of my dreams is there's a pediatrician here who's talking about going onto the islands once a month kind of thing, because there is not enough pediatric stuff there. My best friend PT and I want to join her once a month to go onto the island, one of the islands that she's going to go to and help with feeding and stuff.

[0:19:36] MD: Amazing. Amazing. Okay, so I have so many questions for you. There's so many different ways that we can take this, because what you're talking about is let's start there. Let's start there and then move in. You graduate, you have this degree and your Ð at that time, you're living in a rural area where you Ð

[0:19:59] BCE: Well, that time I'm living in Ð at that that point, I'm living in Michigan.

[0:20:02] MD: Okay. Then how did you go from Michigan Ð Okay. Well, I know how you went, but that was a sidebar earlier conversation.

[0:20:10] BCE: What is even happening? I was born and raised in Washington and I ended up in the Midwest with my first husband. But then I got remarried in the Midwest and he was from there, so we stayed. Of course, my daughter was going to school and I wanted to keep some consistency in her life. By this time, she's grown up and out of the house, so I'm not worried about it. Anyway, I came back because my parents are aging and it was time to come home. I was fortunate enough that I got this job out on the peninsula hospital at this wonderful multidisciplinary outpatient pediatrics clinic that's hooked up to the hospital.

Because it's rural, I ended up doing everything. Two days a week. Now, this is where I did my CF and I kept going. Two days a week in adult acute care and three days a week in outpatient pediatric multidisciplinary. I was so fortunate and I thank my lucky stars every single day. I learned in the trenches with these extraordinarily, skilled and experienced pediatric OTs and PTs, who had been working with the most medically impacted babies and kids for years. I got to learn all about the body.

I got to have somebody tell me, ÒBarb, if you notice, he can talk when he's sitting, but he can't when he's walking. We've got a kid who's got Ð who doesn't have enough core strength to hold it all together when they're moving to talk.Ó I was like, ÒOh, okay. How do we work this?Ó The OT would come over and she'd help me find a position that they were completely supported, so all of a sudden, their jaw could move. IÕve learned this first about all of the communication stuff. Then all of a sudden, the feeding stuff started coming in more and more. Unfortunately, the challenge of being in a hospital environment, especially now. But even then, productivity.

There is a beautiful, beautiful SLP who was my CF person. Because of productivity and everything else, she could never really be a mentor. There was no time. I never had mentorship, other than the required what she had to do. Not because she wouldn't have done more, but there was no more other time. I would peek whenever I could to watch her, because she's so good. I did have more time, actually, with my PTs and OTs, because they were oftentimes in the same treating space. I would learn from them as I went. I learned so much. I was talking about this the other day on SIG13. One of the things I also learned as I got better as a speech pathologist working on all of my swallow stuff and dysphagia with my acute care, was I knew swallow and they didn't. I really know swallow.

Not just aspiration, but the whole process, how that tongue moves a bolus and what we do with our cheeks and our jaw. How we pull that bolus back and how some people have a lateral swallow and it's uncontrolled, and all of these different things. Because I was working with all of these neurologically impacted adults, I was looking at their stuff. Then I was starting to apply it to the kids. I'm watching the OTs work only in sensory and thinking that that's going to work. Yet, I'm watching the kids mouth and I'm going, ÒOh, wait a minute. Wait a minute. We've got more going on here than sensory. Something's going on.Ó Then taking your course, I got more information. Then I started taking more and more and more, because I couldn't get the information within my work.

[0:24:30] MD: Okay. Can you hold on one second? Folks, you can't absorb this in a semester-long class either. This is one of the biggest barriers to baseline skills within pediatric feeding disorder is that one, it's not a required course in studentsÕ academic coursework, right? They have a dysphagia class, but you just have to put a little bit of peds in that dysphagia class and that's the bare minimum according to our national standards, or our academic accreditation standards at this moment in time.

Then, if you do have an optional pediatric feeding disorder course, it's still so much knowledge that we can't put it in in one semester. Then our field between NICU up to 18 is so vast and there's so much skill set, but then you can't just focus on the speech pathology courses. You have to pull your material from all. You have to engage in a professional education in order to get into professional education. Okay, yes. Yes, yes, yes. Thank you. Yes, continue. I'm so sorry.

[0:25:41] BCE: Well, and you know what? I finally just took Marsha Dunn KleinÕs course this fall. It put the bow on all of my different things. It was fabulous. What ended up happening at the hospital is I started getting more and more feeding kids. First, I had this one child who was working with OT. She was giving him the vibrator. Basically, sticking him in a seat to work on his core stuff and he was to use the vibrator to see if he could get his tongue moving. I can't remember if what course I'd just taken. I was looking at that and I was going, ÒOh, not enough.Ó

[0:26:31] MD: Also, the faces weÕre like, we don't need to vibrate it awake. It's already awake.

[0:26:37] BCE: He ended up on my caseload. It was for communication, but they also asked me to look at feeding. But they were looking at it from the aspiration aspect. All of a sudden, I had an in because aspiration SLP. That's how it was at that point. Only if it was aspiration that it end up on the SLP's desk. I was watching him and I was going, ÒOh, we need to change XYZ. I started playing with his mouth and we're working on.Ó I'm not talking about playing with it with toys, but things like dipping a veggie straw in something and helping and put it on the side so that his tongue would get over there to want to taste it.

Teaching him how, because he was low tone and teaching him how to keep chewing on something that he really liked. A strip of very, very hard beef jerky, because he was happy to chew on that. Let me tell you. If youÕd bring it over to the side that was the stronger side and just bring his hand back over and we work on that side. Things like that. I kept getting more and more kids who I did not have the skill set for. I did not have the information, and so I took more and more classes.

I just kept reaching out for more classes and I don't think there is Ð I've got next to me all of my books. I've got AEIOU there. I've got Can Eat. I've got books, because I've gone through all of the programs. And SOS. I've gone through all of the programs. Yours started me down a whole body Ð rabbit hole. The fact that maybe after they swallowed, that's where the problem was. Because I was seeing these kids who we weren't Ð who weren't aspirating. They were chewing. They had the ability to chew, but they really were avoiding certain foods. You'd work on the mouth and you'd work, and it wouldn't go any further.

It's like, why is this not going any further? Then you start watching them and they'd swallow and their eyes would go Ð You're going, ÒWait a minute. Buggy eyes. What's going on here?Ó Then I started looking at the esophagus and taking classes on the esophagus. Melanie Potock got me going down a rabbit hole with that, because she had just gone on to the National Eosinophilic Awareness site. Every summer, they have a couple days of a conference. She had taken this thing and was telling me all of this wonderful information. I said, ÒOh, I've got to get it from the horse's mouth.Ó I started taking these things and learning more about things like esophagitis.

In my adult side, I did MBSs. Okay. I still do MBSs. One of the things that was so fortunate is in my hospital, because nobody has enough time, because everybody's doing 16 different things, because we're rural and there aren't enough people. The radiologists do not want to have anything to do with our swallow studies. They just watch the film afterwards and go, aspirated, didn't aspirate. Nothing more than that.

[0:30:22] MD: I'm so glad they can feel like a billion dollars for that contribution.

[0:30:27] BCE: Well, but the other thing is GI is so slammed in our area. GI wants us to look at the esophagus during our Ð Yes, that they want Ð I know.

[0:30:40] MD: Yes, that's amazing.

[0:30:44] BCE: I know. They want an esophageal sweep. I am used to taking somebody, turning them AP and watching the food go down, and seeing if we've got this motility. Seeing if there's something in there that looks like it might be a structure. Seeing something in there that makes you go, ÒOoh, I think we've got achalasia. Now, I cannot diagnose those things. I know I cannot diagnose those things, but I can see them and say, ÒThis is suggestive of,Ó and send them on to the right person, right?

[0:31:18] MD: Yes. This is literally best practice. When you look at the American Academy of Radiology's position statement on modified brain and swallow studies, they are to include the esophagus. However, historically across the country, SLPs can't, because if a radiologist were to actually come in and participate in it, they can build for an esophogram scan. However, if we look at best practice on paper, you're living best practice. You're doing what we should be able to do. The fact that that's anomaly is heartbreaking, but at the same time, you're living the dream. That's amazing.

[0:31:59] BCE: But I can't do it with pediatrics, because I don't Ð

[0:32:01] MD: What?

[0:32:02] BCE: No. Well, that's the challenge. Because we're an adult Ð we only do the adults there. We send to Seattle Children's or to Mary Bridge for our swallow studies. I'm not sure what the policies are, etc. When I've asked for views, I've never been able to really get them. I just hooked up with one of the SLPs there. By the time this plays, I'll have already seen this. I'm going to go in with this little girl, and we are going to get an APU finally, because I have argued and argued and argued. As a side note, at ASHA this last year, did you go to the master's class on Ð

[0:32:49] MD: No. No, because we've had a family situation. Sir Dr. Bubble Butt bit hand face off and their hamster brothers and the eight-year-old found him that morning. There was waterworks and a cremation in the front yard and the whole nine yards. My husband called and I ended up from New Orleans talking my eight-year-old down from the emotional cliff, because also, they don't know that it was hamster side. The going story is that he just flew too hard off of the spinning wheel. I'm sorry. You all laughed, but it was like, the child's version of it. Then my husband was like, ÒOh, my God.Ó

I ended up FaceTiming my children and working through, so I missed the master's class. Hammy has been cremated and his scattered to the wind. We now have a hamster ornament on our Christmas tree. We're going to make it, so I missed the master's class.

[0:33:54] BCE: The master's class this year was with a radiologist. The whole thing was talking about where the borders are.

[0:34:04] MD: Oh, you froze, darling. Oh, Barb, you froze. It's okay. You said, the master's class was with the radiologist?

[0:34:11] BCE: Yes. It was about where the lines are, okay? Should we be including a sweep? After there was much discussion, and it was pretty obvious that they did not want us including a sweep of any kind. I asked for the mic, because they were passing the mic around and asking questions. I said, well, accept. We need this because, and I said, ÒYou guys are just putting liquid through. I need to see what happens with a child when I put a solid through and why their eyes are bugging out.Ó

I said, ÒI need to know if I give them a solid and I make it a little moisture if it'll work. I need to know if I alternate solids and liquids, if that makes it comfortable. I need to know if this doesn't work, but this does work and then try to figure out why. I need that information to make it more comfortable.Ó The response was, ÒWell, it doesn't matter to me.Ó This is the radiologist just talking. He said, ÒIf it takes 11 seconds, or it takes 20 seconds for that bolus to travel down, if it's within normal limits, it doesn't matter to me. That's within normal limits. Why does your information matter?Ó

[0:35:40] MD: I'm sorry. What the hey?

[0:35:45] BCE: I'm not saying it perfectly, but that was the basic gist. I'm going, well, it makes a huge difference, because it can make the difference between my child having three foods that they will eat and having six. Because I might be able to take this food and modify it just enough to make it another food and to expand it. I was ignored. I think, because everybody is on the adult side and this guy was not a pediatric person, he's not looking at it the same way.

The esophagus is so important. The food going into it, how it enters the stomach, all of this is so, so important. We've got to include that in our knowledge set. We've got to include the understanding, and this is what I learned from you at the beginning, was you have to include poop.

[0:36:45] MD: Yes, you do.

[0:36:47] BCE: The Bristol poop scale is one of my favorite things. I take it out and I show it to my families all the time. They will not think their child is constipated. Then I show them rabbit poop. They go, ÒOh, yeah. That's it.Ó It's like, constipation. It's not just my opinion. This is official. When you start talking to them about the fact that it's all one long tube with just some vowels along the way. If we think about it as just plumbing, once the plumbing gets full, it starts backing up. We can't put anything down. With our little littles, if it gets backed up enough, they just vomit. I had the perfect example a little while ago, and it was an awful example, but at the same time, it was perfect. This mom is fine with me sharing it. A little tubie gal.

I had warned mom. I had said, ÒWe've got some constipation going. We have to get her cleaned out, or she's going to have problems.Ó Mom was listening and nodding, but she didn't like doing the Miralax. She didn't like doing all of these things. One day she went in to put in the feed. It was three and a half hours later. She opened the valve and it spurred it out. The food spurred out, because it was all still there, because it couldn't go down.

[0:38:28] MD: I was trying to explain to my graduate students last week about why a Nissenfundoplication is not current best practice after G2 placement. Okay, so folks, if you're not familiar with the Nissen fundoplication, in different parts of the country, it's called a Nissen for short. Other parts, it's called a fundo, or fundoplication for short, but it's actually one word, Nissen fundoplication. What they do with this procedure is they take the top portion of your stomach and wrap it around and recreate your lower esophageal's feature, not for the purpose of bariatric weight loss, but for the purpose of preventing gastroesophageal reflux disease and gastric contents from coming back up through the esophagus.

Okay, on the surface, that sounds great. Sounds, in theory like this is going to work beautifully. However, some of the common side effects are that it relaxes rather quickly, so it's not like a permanent fix. Strictures can actually develop above the surface of the Nissen fundoplication. Also, it does not stop GERD. You have not Ð

[0:39:38] BCE: Well, and it's also can be too tight.

[0:39:38] MD: Yes. It can be too tight, so that the bolus can't go through. Yes. But it doesn't stop GERD. GERD is a proton pump producing activity, so you're not actually neutralizing or addressing it at the cellular level. If you have GERD, it increases the likelihood that you can have other neurological, or complications within the GI tract. I've had so many patients that have had the Nissen fundoplication done, and then they get the flu, or stomach bug, or something doesn't agree with their stomach, and they are incapable of vomiting. They can't throw up afterwards, so because the Nissen's been placed.

Then these families have to open the G-tube site, and actually Ð and if they're trying to retch that diaphragmatic contraction, it shoots out of the G-tube site, or they have to pull it out. It has the vomit smell, because it's accurate, it's been in there. These are things that as speech pathologists, when we go and we're doing treatments, if I have a tubie friend, I try to time my therapy interventions with the initiation of their feeds, because a lot of times when they go to vent at first and they vent that G-tube site, if there's residuals in there, and if they put the syringe in and they go to vent, if you're getting a lot of residuals and it's pulling, and you're getting millimeters that equate to ounces, we probably also have the concern for delayed gastric empty and delayed GI motility, and we don't need to be adding in when we're already pulling out.

Those are things that are Ð these are things that our GI counterparts know, that our pediatric nurses know, especially the ones that are assisting with feeds. But where do we find this information as a speech language pathologist, right?

[0:41:46] BCE: Yup. Well, you see, hmm, that's where you've been my goddess.

[0:41:55] MD: I've been called a smart ass and a badass, I haven't been called that one before. Thank you.

[0:42:04] BCE: Now I'm hoping my nose in everybody's business.

[0:42:07] MD: We should be. But that's why you are the SLP Swallow Detective. Also, she's got the emoji, she's like the Sherlock Holmes, but the lady Sherlock Holmes. ThatÕs what we should be doing. We have to engage in that deep dive into what else is this? How are you doing this in rural peninsula Washington?

[0:42:35] BCE: Well, that's one of the reasons that I just have to Ð I have to do so much con-ed, because I am more or less on my own to teach myself. I have had to teach myself.

[0:42:48] MD: Do you have at your hospital access to a pediatric GI, or is it adults only? How far away is the most Ð how far do these families have to travel for pediatric specialists?

[0:43:01] BCE: They have to take a ferry from across Puget Sound to Seattle and to Seattle Children's, or they have to drive down around the bottom of the peninsula to Tacoma to Mary Bridge. There is GI there. The challenge is, that's two spaces, okay, for not just our peninsula people, but all of the people on the mainland who are Ð that's Seattle environs has gotten very, very populated. There's lots and lots of people. Generally, for my patients to get into CGI, it's at least six months.

[0:43:48] MD: Oh, my gosh.

[0:43:51] BCE: Yes, it's awful. It's absolutely awful. I mean, right now to see a developmental specialist for ASD, which of course is a completely different thing, minimum of a year. I've had kids waiting 18 months. Come on. Come on. Where does that put us developmentally?

[0:44:10] MD: We're missing all these windows. Also, where does that put us from a trauma informed care lens, where all these kids are developing these terrible associations with experiences and foods?

[0:44:28] BCE: That's why I work really hard to make my reports as detailed, but medical as possible, because I want the pediatricians to understand exactly what's going on and why this is impacting these kids and how it's impacting the families, too. Because of course, the big thing about PFD, and this was the reason for the book, is it's not just the kid. It's the whole family unit.

Here's another reason why I keep doing a deep dive in everything I can find is all the families that would come into my office, in tears. We have been to XYZ. We have seen this therapist and that therapist. Some of these kids, I mean, I have one family that's working with Feeding Matters with their mentor program with another family. Oh, it's been some time.

[0:45:32] MD: Yeah, the power of two. It's amazing. It's free. Folks, if you're listening and you're new to this, Feeding Matters has a program called The Power of Two. Well, one caregiver will mentor another caregiver for free. It's a been there done that, this worked, this didn't work. Also, while we're there to set you for success, the National Foundation of Swallowing Disorders for free once a month, it's normally the second or third Thursday in the evening, they have a virtual support group, where caregivers can log on and it's the link is available on the NFOSD. That's their acronym. That's their Instagram and Facebook handle. You can find it right there. The caregivers can log on and build each other up and get some guidance and recommendations, without receiving medical advice, to see like it's a fine line. Yes. Yes. All right, continue. I'm sorry. I just wanted to. Yes, so the caregivers, the power of two. Yes.

[0:46:38] BCE: I just had so many people coming in and crying, because nobody's helped us. Nobody. It's still the same. Or we'd add three foods for X amount of time and then it would go away. Oftentimes, these were behavioral approaches. The problem with a behavioral approach is if there's an underlying medical problem, which most these kids have, either medical or maybe it's oral motor, it could be simple as that, it's not going to stick, because we haven't taken care of the real problem. These families are so traumatized and it takes so long to get them to trust me too.

I just lay it out for them at the beginning. I say, ÒYes, I hear you. I've been here with other families.Ó I talk them through the kinds of things we're going to do and work together. I'm pleased to know that several of my families that have moved out of the area, we continue to be in contact. I have several families who still contact me and ask for help. I can just give them little things here and there.

Anyway, one of the things, we are near a naval base, okay. We have an army base, too. We get a lot of families that are going in and out. They're only here for a few months, or they're here for six months, or here for a year. They don't have a lot of consistency. I had this one mom who we had done so much. Her son had come so far. She was crying, because they were moving. She said, ÒI have to spend the next three months with my mother-in-law, while my husband is deployed with my kids, and she doesn't believe this is a thing. She's going to try force feeding. She's going to be yelling at me and da, da, da, da, da, da. I was online and I was googling and I was looking for all of these books trying to find something to give her and there was nothing out there. Absolutely nothing out there that talked about the journey.Ó

Yes, there's Daniel Tiger and taste this food and that stuff. It wasn't the journey. A friend of mine, somebody I went to school with in Michigan, she had just written a book for apraxia. She is just this lovely, lovely human. Mehreen and I were talking, because I was congratulating her on her book.

[0:49:31] MD: What is her book?

[0:49:33] BCE: Oh, she's got a couple out. They're both apraxia books and I'm going to look here. Billy Gets Talking: PreschoolerÕs Journey, Overcoming Childhood Apraxia Speech. And Let's Get Talking: A Speech Language Companion for a Child's First Functional Words.

[0:49:52] MD: This is precious.

[0:49:54] BCE: Yes, fabulous. I had just bought Billy, because I found out it was out. I went, ÒOh, this is wonderful. This is what we need for feeding.Ó She said, ÒSo write it.Ó I said, ÒYeah, I could do that, but I can't illustrate it.Ó She said, ÒSure you can. I learned how to draw, so I can do mine.Ó I said, ÒOh, you don't understand. I don't draw. You don't understand.Ó I am lucky if I make stick figure figures that aren't Ð that are above the level of a three-year-old. I really canÕt draw.

Anyway, a long story short, she agreed to be my illustrator. Mehreen is a very, very soft heart, a very lovely human being. Doing my book actually, when doing some of the pictures, and it actually cost her trauma. Because she said, ÒI have a very hard time drawing these kids making fun of another kid.Ó I said, ÒI know. I understand. But this is the journey. This is what these kids are living, and we need to say it. We need to show it.Ó ÒI have trouble having this mom be angry with this child.Ó ÒYeah, I know. This is what's in my office every day. We need to show people.Ó

That's why I wrote it. Some of these quotes, some of the quotes that there's this one page that's all about the things people say to a mom. Things like, ÒOh, he'll eat when he's hungry. Kids won't starve themselves.Ó We've heard that from pediatricians, right?

[0:51:42] MD: Yes.

[0:51:44] BCE: I like the family member who says, ÒBring him to my house. I'll get him to eat.Ó

[0:51:50] MD: I had one kid that would hide underneath of the table, and say, ÒDon't hit. Don't hit.Ó Apparently, the grandfather would take a belt and threaten to pop him and would take his leather belt and threaten to pop him if he refused to eat. He would crawl under the table, because the grandfather wasn't mobile, because of his health conditions, and the child was out of arms reach. It's horrific what these families hear.

[0:52:21] BCE: I mean, I had one particular family, it was very interesting. They're one of the reasons for the book, too. She's probably listening, so she will know the story. We had started therapy. Her little girl was traumatized. Mom had been trying so hard with a bottle, but it was really forced feeding. I was trying to get her to back off. Of course, she was terrified that her daughter was going to starve to death. I totally understood that. One of the first things for us was getting her out of the seat, because the seat for her was trauma.

Her dad, she's a daddy's girl. Her dad, it is this wonderfully warm guy. I got them all sitting on the floor. I said, ÒLet's make a picnic out of this.Ó She is going to be, the way we're going to support her, because she's very, very floppy, low tone. ÒDad, you're going to sit like an Indian and she's going to sit between your legs.Ó She, of course, loved that. She was completely supported and beautiful. We were able to work on things this way. All of a sudden, she was a willing to explore and willing to try and touch and all of these different things. Oh, she loved pickles. Slices of pickles. You should have seen this. Gnawing on pickles.

They had to go away at one point. They had to go down to Madigan, which is the armed forces hospital. They have a wonderful program there with GI and stuff. We now work together. It's really good. At that point, they went down and they had to see the whole GI team and the SLP they saw at the time. I don't know who it was. Of course, they explained to her that they were sitting on the floor doing this picnic style. She went, ÒYour SLP is sitting you on the floor?Ó They came back and theyÕre like, ÒWeÕre not sure that this is really best practice. Da, da, da, da, da, da, da.Ó I went, ÒI understand.Ó I said, ÒAnd normally it isn't best practice. I would like to see her in a high chair. I'd love to see her in a feeding seat.Ó I said, ÒBut that's trauma for her. We're going to ÐÓ

[0:54:49] MD: This is best practice.

[0:54:51] BCE: For her, best practice is getting away from that and allowing her to be safe. Allowing her to know that this thing that has been so scary for her can be within an environment of love, within an environment where she is playing and it's joyful and her parents are not stressed. They sat there and they listened to me and they relaxed again. Ever since then, we never had a Ð there was never any question again, because they recognized that for this child, it was going to be her own journey. It was not going to be somebody else's journey. That's why I wrote the book, because we need to know that everybody's journey is different. We need to know that all of these outside voices, those aren't the important voices.

The important voices are heart, listening to the people who are supporting us, not the people who are cutting us down. That we need people on our team who are there to help us be our best, who are there to help us help our child best. Not the people who check off boxes. ThatÕs not what we do.

[0:56:18] MD: No. Or who engage in medical gaslighting, because I see that all too often, where Ð the scenario you just gave is kissing cousins with medical gaslighting. That is where our physicians, our medical specialists put into our caregivers' heads that it's something that they're doing, that this is behavioral, they're not taking serious the signs and symptoms that we're bringing to the table that we want to discuss. The parents walk away, thinking guilt, shame, and by parents, I mean caregivers in general, they carry all of this with them, which is how they get to the point where they're in your office, or I'm in their home and they're a bubbling hot mess. This is how that occurs.

Your book does a beautiful job of meeting the caregivers where they are on their journey. That's what we have to do. We have to meet them where they are, and we do have to be respectful of the known trauma that we know they've gone through and the unknown, and the power of a second opinion. On that note, Feeding Matters does have scholarships that they offer throughout the year, and those scholarships help caregivers get to either via transportation, or offset medical costs for a second opinion.

I've had little ones travel to Cincinnati Children's Hospital. I mean, that's a bit of a stretch from the peninsula of Washington, but to go from Florida to Cinci, it's not Ð I mean, it's closer, but those exist.

[0:58:17] BCE:  Seattle Children's is wonderful, and Mary Bridge is wonderful. It depends on your providers, I think, everywhere we go. I happen to love a lot of what CHOC is doing in California, Southern California, and I've gone down to their conferences and learned a lot GI down there, because they really pull their GI in.

[0:58:40] MD: Okay, wait. Tell me your favorite interprofessional practice conferences that you've gone to, where you're like, this is good information. I know there's somewhere, the conference is good, but maybe there was one or two presenters where youÕre like, retro Houston. But give me the good ones.

[0:58:55] BCE: CHOC is my absolute favorite. That's Children's Hospital of Orange County, and that has been my favorite. There's also one, anything that Baylor does, they've been doing some wonderful things that include responsive feeding, they're nutritionists coming in, theyÕre RDs and GI. There's also one through Texas. As a matter of fact, I think itÕs Ð I'm not sure which Texas it is, which hospital. I'll have to send it to you. Matter of fact, I'm watching their GI conference this weekend. Saturday is a GI conference. I'm so excited. I love my GI conferences.

[0:59:40] MD: Wait. Did you know there's a GI podcast?

[0:59:43] BCE: No.

[0:59:46] MD: Oh, my God. Okay, it's called Bow Sounds. It's called Bow Sounds. I'm not sure if you can see it. It's called Bow Sounds. It's by NASKAN, North American. Oh, this picture is too small. It's by NASKAN. It's a pediatric GI podcast, and it's phenomenal. Also, I just like that they named it Bow Sounds. I just think that's really funny. You can find them on the land of the Instagram as well, because they talk about what upcoming episodes are coming out, but that's a good one.

[1:00:22] BCE: Oh, I will definitely Ð Oh, you're my new one. That means I'll be coming home and talking to my husband while he's working on dinner. He was so awesome. Look at me over the table and go, ÒBarbara. We are eating.Ó

[1:00:38] MD: My husband, right now I'm recording at the kitchen table. My husband sits on my right and Goose sits across from me and the Bear sits on my left and bear and I are the nerdy anatomy ones in the family. When we get to talking about it, Christian's like, ÒBaby. Baby, can we not talk about poop while we're eating?Ó Goose is like, ÒYeah, I just can't do this.Ó Bear is like, ÒBut I have so many questions.Ó I'm like, ÒWait. We'll circle back around, babes.Ó I don't know. It's really funny. Every once in a while, I get a text message of a picture of some kidÕs poop. The mom is like, ÒIs this look okay?Ó Goose without skipping a beat will look over my shoulder. HeÕs like, ÒThey need a second opinion.Ó I'm like, ÒYou're 10. Sush.Ó The fact that my 10-year-old can look at a turd and know that that's not normal. He's so grossed out, but he knows. Yeah. Oh, my God. My BNSLP's husband win.

[1:01:36] BCE: I was talking to my husband about a child with laryngomalacia the other day. I was talking about that I'm so angry, so angry because an ENT did not scope this child and just said, ÒOh, yeah. From the sound, oh they have laryngomalacia. They'll outgrow it.Ó First off, they didn't look. Okay, so don't think the diagnosis is really a good idea that way.

[1:02:03] They don't have extra vision yet. Let's go there.

[1:02:06] BCE: Exactly. After doing the SENTAC conference where I got to see all of these larynx, oh my gosh, it's so amazing, Michelle. All of these different films with all these larynxes and tracheas and oh, it was fabulous. Anyway, hearing this ENT reading, this report and hearing from this mom, my jaw was on the floor and I was just dying. I'm talking to my husband about it and he's going, ÒOh, it could be this or this with that sound.Ó You have been listening. He goes, ÒYou cannot diagnose that just by sound.Ó

[1:02:47] MD: Yes. Oh, I love that. Oh, my God. I don't know what we would do without them. Yes.

[1:02:54] BCE: I wish I would still watch the poor guy.

[1:03:02] MD: Yes. I'm sitting here giggling. There's mine. Yes. You guys, Mr. Dawson just snuck into the kitchen to make himself a snack. This is real life podcast recording right here. We're talking about food and poop. Barbara, we have joyfully run over in the most wonderful way. This was to cover, to set PFD month off with all of the interprofessional practice partners we need to work with, to about why we engage in IPP, about the barriers for rural SLPs and you gave strategies for how to overcome and resources and how your journey culminated, and Tyler Takes a Taste, to help build them up when they're heartbroken. This is why we do what it is that we do, all with the mindset of helping to heal. If someone's listening and they have questions for you, how can they reach you?

[1:04:03] BCE: They can reach me on my Instagram, which is, let's see, what did you tell me? That's Ð

[1:04:13] MD: ItÕs @SLP.swallowdetective.

[1:04:18] BCE: Yeah. You can reach out to me there anytime. I will tell you, I am not good at social media. I need somebody young to come show me how to do this.

[1:04:29] MD: IÕm sure if you put an all call for help, somebody will want the mentorship and trade mentorship for Instagram support.

[1:04:37] BCE: I will happily trade mentorship for Instagram support. If somebody can help me figure out how to do posts, they take me so long, I just can't do them, because I don't have time. If somebody will, oh, that, or if they want to help me with my website, because I'm starting some private practice, I'm going out into the community, I will trade mentorship for helps with graphics. I am there.

[1:05:04] MD: Beautiful. Oh, my God. Y'all, I mean, she's good peeps and well-versed and has a heart of gold. There it is. Now, if somebody has extra love money, now I know it's the beginning of the month and normally my grandma's budget always allocated love money at the end of the month. If somebody has extra love money at the end of this month and they want to make a support or a donation, what organization would you recommend?

[1:05:28] BCE: I am always all about Feeding Matters. They have made such a difference in the lives of my families. I've sent several families to them, like I said, for the mentoring. Just being able to go and find there's somebody else, somebody else going through that, which is what the book is all about, knowing somebody else is going through that. To actually be able to talk to somebody and watch some films, oh, people come back to the office and they cry all over again, because they're not alone. Happy tears.

[1:06:01] MD: We need that. Yes. Okay, folks, Feeding Matters, also, Feeding Matters, thank you so very, very, very much for making May pediatric feeding disorder awareness month. Folks, don't forget that June is Dysphagia Awareness Month. They intimately go hand in hand. Barbara, thank you for kicking off PFD Awareness Month, for not being a mugger, for joyfully calling for us in New Orleans, and for sending me a copy of your book. I am so grateful for y'all.

Folks, make sure you take a peek at Tyler Takes a Taste. Find it on the Amazon. Give it a lovely five-star review when you're done reading it and hit us up on First Bite Podcast on Instagram. We love it when you leave a kind review and kind words there. Barbara, thank you so much for joining us.

[1:06:51] BCE: Oh, thank you so much for having me. I am just thrilled beyond belief.

[END OF INTERVIEW]

[1:06:58] ANNOUNCER: Feeding Matters guides system-wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. 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.

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.

[1:07:51] 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 Dawson, the All-Things PFDs 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.

[DISCLOSURE]

[1:08:37] MD: Hey, so it's Michelle Dawson here, and I need to lay out my disclosure statements. 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 SCSHA. For this year for 2021, I volunteered for the Pediatric Feeding Disorder Planning Committee for the ASHA 2021 Convention.

My financial disclosures. 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 receive 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. I do receive royalties from the accompanying 13 and a half hours CEU for the book from speechtherapypd.com.

Yeah, I stay pretty busy. Those are my financial and non-financial disclosures. If you ever have any questions, please feel free to reach out. All right. Thanks, you all. Bye.

[1:10:45] EF: The views and opinions expressed in todayÕs podcast do not reflect the organizations associated with the speakers and are their views and opinions solely.

[END]
FBP 231		Transcript

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