EPISODE 266

[INTRODUCTION]

[0:00:14] 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 Cola Town, South Carolina, and I guest lecture nationwide on best practices for early intervention for the medically complex and fragile children. First BiteÕs mission is short and sweet, to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate.

[0:01:01] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[0:01:05] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:01:10] EF: Ethics on how to run a private practice.

[0:01:12] MD: Pediatric dysphagia to clinical supervision.

[0:01:15] 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.

[0:01:25] MD: To break down the communication barriers, so that we can access the knowledge of their fields.

[0:01:30] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[0:01:34] 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.

[0:01:45] 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.

[0:02:06] MD: So, sit back, relax, and watch out for all hearthÕs growth, and enjoy this geeky gig brought to you by SpeechTherapyPD.com. 

[DISCLOSURE]

[0:02:20] MD: Hey, this is Michelle Dawson, and I need to update my disclosure statements. My non-financial disclosures. I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia Outreach Project, DOP. I am a former treasurer with the Council of State Association Presidents, CSAP, a past president of the South Carolina Speech Language and Hearing Association, SCSHA, a current Board of Trustees member with the Communication Disorders Foundation of Virginia. I am a current member of ASHA, ASHA SIG13, SCSHA, the Speech-Language-Hearing Association of Virginia, SHAV, a member of the National Black Speech Language Hearing Association, NBASLH, and Dysphagia Research Society, DRS. Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 Convention in Boston, and I hope you make it out there.

My financial disclosures include receiving compensation for First Bite Podcast from SpeechTherapyPD.com, as well as from additional webinars and for webinars associated with Understanding Dysphagia, which is also a podcast with SpeechTherapyPD.com. I currently receive a salary from the University of South Carolina in my work as adjunct professor and student services coordinator, and I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys.

[0:04:18] EF: The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely.

[INTERVIEW]

[0:04:26] MD: All right, everybody. I don't even know where to begin. Today's episode is basically, a frickin' miracle that we've pulled this off, because we've literally had to divert from four natural disasters because I kid you not, we had an ice storm, a thunderstorm. I lost power, got stuck in a hurricane, couldn't get back home in time to record, or to technically, to tell to record, we moved. Then today, we're recording in anticipation of a blizzard hitting my house on Saturday. They're here to clean the chimneys because our chimney doesn't work and knowing that we're going to lose power at the new house.

Today is a miracle that we're pulling it off. If you hear weird scraping noises, besides the dog's jingling collar, it is a chimney getting cleaned for safety and not murder. Oh, Lindsay, my basement looks like a murder basement when we bought the house because they literally slaughtered pigs in the side yard and hung them in the basement. I can't make it up. It's a really nice house one. Had a murder basement. The scraping noises are not affiliated with the murder basement. They're affiliated with the chimney.

On that note, those are your disclosures to kick us off today. But y'all, none other than the most gracious Lindsay Stevens. Holy cow. Thank you for allowing me to fall apart for a year and regroup.

[0:05:55] LS: Right. We all do it.

[0:05:57] LS: Hello. Thank you so much for having me.

[0:06:01] MD: Yes. Okay. Dog escaped. That's great.

[0:06:07] LS: At least, the guy is still on the roof and not have Ð hasnÕt fallen in.
[0:06:12] MD: Yes. Oh, yes, because it's a three-story roof, so we're also on the lookout and it has me nervous. But we put a prayer on that before we begin recording today. Yeah, we did. On that note, how are you, Lindsay? Hi.

[0:06:26] LS: IÕm good. Hello. I'm great. I'm so excited for this new year and just filled with ambition and excitement. Yeah, I'm doing great.

[0:06:37] MD: Yes. Love this. Okay. I know you, but folks don't know who you are, or where you're from. But you are Lindsay Stevens, a pediatric feeding and swallowing guru and with Gelmix, which is, I like to explain, it comes from a C bean, but not the chocolate one and not the cocaine one. ThatÕs my explanation.

[0:07:01] LS: I'm going to add that to my education sessions.

[0:07:06] MD: I mean, well, people giggle and then they sit up and pay attention, because Ð

[0:07:09] LS: True. They're like, ÒOh, it's not cocaine. Okay.Ó

[0:07:14] MD: Not cocaine.

[0:07:14] LS: That's so funny.

[0:07:15] MD: Although, I did go to a patient's house one time and I kid you not, their big, giant, white dog's name was Kane, and they had adopted the dog. I was like, ÒKane?Ó I was thinking Cain and Abel, because Ð theyÕre Baptists. She's like, ÒNope. Not that kind.Ó I was like, ÒOh.Ó But okay, give us your back story. Tell us about you.

[0:07:40] LS: Yes. Well, so I've been practicing as a speech pathologist for almost 22 years now. The majority of my career was at Phoenix Children's Hospital here in Phoenix, Arizona. I really grew up there. Before I worked at the hospital, I worked in the schools for a few years and the hospital was just life-changing, right? I mean, I was able to collaborate with a variety of different disciplines and served on the aerodigestive team.

I worked in all of the acute care service lines. So, the neonatal intensive care unit, the pediatric intensive care unit, the cardiac intensive care unit, and then just the general acute floor. I also worked in outpatient. I worked in our inpatient rehabilitation program for several years as the dedicated therapist there. Then about four and a half years of my tenure there at Phoenix Children's, I was the hospital's first clinical specialist of speech pathology. That was really cool because it was like, this new position and it incorporated a variety of different things. I wore very, very many different hats.

One of my main roles was educating other staff, training other staff, and then also, overseeing our outpatient multidisciplinary pediatric feeding disorder program. Now, it's called pediatric feeding disorder program or clinic, I think. That was awesome because I got to work really, really closely with Dr. Dana Williams. She's a gastroenterologist. Again, with the aerodigestive team, really closely and just the awesome, awesome therapists who were just amazing, and a few of them are still there, but a lot of them have gone on to other locations.

That was really a neat experience to be able to lead in that way, but also, just to learn so much more, having that really strong acute background going into what this looks like long term. During this process that I was at the hospital, I have two kids and both of them had dysphagia. I got into the field because I just have such a heart for serving and a heart for helping people. I knew that I wanted to do something in the helping people world, I just didn't know exactly what that was going to look like.

When I came upon this career, I was like, ÒOh, my gosh. This is perfect.Ó I actually got into it, thinking I was going to work with adults, and like a generic, what do you call those classes that are Ð like the survey class you take. There was an adult who came to our class who had aphasia, he'd had a stroke and I thought, ÒOh, my gosh. I want to help people communicate.Ó To me, that's the foundation. I mean, it is the foundation of how we establish relationships and serve one another. Anyway, that's how I got into it.

Then, after I graduated from graduate school, I got into PFDs. Then I was like, ÒOh, this is totally where I want to be.Ó Anyway, so both my kids had dysphagia and my daughter came first. I was just in denial. My husband's like, ÒThere's no way that she has dysphagia.Ó But she was coughing and choking when she was breastfeeding and she ended up having some food allergies and reflux and a minimal type one class, so a deep, inner gnawing action. She saw all the specialties and all the things.

That definitely gave me such a different perspective for being on the parent side. I was working in the NICU, actually, at the time when I was pregnant with her. Each week would go by and I'd be like, ÒOh, my gosh. Okay, 27 weeks. 28 weeks. Okay.Ó See these kids at those stages and just be so thankful for their health because you can just see everything that goes wrong and it's just a miracle. I mean, it's just such a miracle that God designed our bodies the way he did and that everything comes together and works the way it should. Anyway.

[0:11:43] MD: I love you. I just do. You just radiate joy and hope. I distinctly remember, because I had two preemies. Did bed rest with both of them. Every week, I ticked off, but I did EI home health. I would get in when they were out of the NICU, but I'm like, ÒOkay, I remember this patient was born at this week, this patient ÐÓ I ticked it just like you did but from the home health side. But thank you for being raw. Okay. That was your little girl. How old is your little girl now?

[0:12:16] LS: SheÕs 13 now.

[0:12:17] MD: Oh, thatÕs sassy.

[0:12:19] LS: I know. She has been sassy since she was 13 months old, seriously. People are like, ÒWait till she's a teenager.Ó I'm like, ÒNo, she's like an infant teenager.Ó

[0:12:28] MD: Yeah. She is.

[0:12:31] LS: She is. But I'm so proud of her. My colleagues at the hospital, when I came back from maternity leave and was talking to them about, ÒOh, gosh. She's having these difficulties.Ó I was so thankful for them, because it's so hard to wear, as you probably know, your mom hat and your speech pathologist hat, right? Oh, my gosh. I felt so pressured to do that.

Anyway, I came back to the hospital after maternity leave and my good friend and my colleague, Kelly, had just really helped me navigate everything. We finally got modified barium swallow study and got into the right professionals. Actually, Dana Williams was the one that saw my daughter. She was the one that I worked so closely with at Phoenix Children's.

Anyway, so yeah. She's 13. The reason I brought up my colleague Kelly is because she also helped parent. She helped me parent this really strong-willed, spirited, sassy girl. I remember her and a few other colleagues just being like, ÒIt's good that she's strong-willed. You want that in a girl.Ó We've definitely tried to shape her personality to be a leader and a leader who listens to people and not just bosses people around.

[0:13:45] MD: I have a 12-year-old niece and she bullies the daylights out of my 11-year-old. I mean, seeing Sam bosses the daylights out of Goose. I was talking to my sister about it, because Goose doesn't know what to do. Hell, he put him in a headlock, right? Goose knows he can't hit a lady, even his own cousin. He just took the licking. There's no other way to say, or describe what happened. My sister heard and came to squat. I was like, ÒSquat.Ó I was like, Samantha Ann is demonstrating very strong leadership skills to not to be around my sense. Because yup, I agree.

[0:14:29] LS: Well, tell them not to be so violent.

[0:14:31] MD: Yes. Yes. Violence, violence is bad. But she's going to be amazing, whatever she puts her mind to.

[0:14:37] LS: I hope so. Yes. We always know she's going to be a lawyer, right? Because she can argue and defend her side till the cows come home. But she's awesome. She's amazing. Yeah, she still has some feeding difficulties. This year, she's great. I mean, as a 13-year-old. She just turned 13 several months ago. Yeah. I mean, she was falling off the charts and we had to do a pediatric supplement and thankfully, we never had to do anything like a feeding tube or anything like that. Yeah, she still struggles.

I mean, this morning she took three bites of a bagel and was like, ÒI'm full.Ó I'm like, ÒYeah. Okay. Okay, youÕre full. Listen to your body.Ó It's been hard. Then, of course, just understanding the struggles that parents have at home, when you're away from the clinical landscape and you're dealing with them eating several times a day, day in, day out. Are they going to eat? Are they not going to eat? How much are they going to eat? Is what they're eating healthy? I mean, just, you know. I definitely have that a little more experience than I would have liked in that area.

It definitely gives me such a good perspective when I'm working with families because I can definitely understand where they're coming from and all the challenges and dealing with the physicians and the physicians who don't know what they're talking about. That was actually one of my first challenges was her pediatrician when she was born, literally, did not understand swallowing, didn't know what a modified barium swallow study was. Didn't understand really what dysphagia was. That was eye-opening. I was trying to educate this physician at the same time as I was trying to advocate for my daughter.

[0:16:17] MD: I just spoke with a lovely lady. Marianne, if you're listening, it was lovely talking with you. Marianne works here in Virginia, in the same state with the Children's Healthcare System. She was talking about this case that she had, and she was having to advocate and her frustration with the specialists and the doctors simply not knowing why she wanted a referral to GI, why she wanted a referral to these places. She was like, ÒIt's as if they've never heard of this before.Ó

Folks, if you're listening, a gentle reminder, they probably haven't heard of pediatric feeding disorder. Let's be honest, this diagnosis code is two and a half years old. If they went to school during the timeline where it was just dysphagia, we've recently incorporated esophageal dysphagia into our scope, then they probably didn't have the exposure or the understanding.

I'll trickle back to past episodes, where we've had my sweet friend, Tessa Gonzalez. Dr. Tessa Gonzalez, she's a pediatrician, also a PFD advocate, and mommy. Tessa, I love you. She's talked about her training with basic developmental skills as a pediatrician is scant, because they're so focused on, as she explains, keeping them alive and identifying when they need to send a specialist.

[0:17:45] LS: At the hospital, that was really eye-opening to me. Then working after the hospital, I started my own business and I've seen kids for feeding, swallowing, speech language therapy, and done a few other things as well but yeah, actually, I just started or I just signed on to volunteer with Feeding Matters. I know you're a volunteer for them, too. I know. I'm so excited. I've worked with them, or I shouldn't Ð Yeah, I've worked, or I did work with them really closely at the hospital. This was back with Chris Lynn and Shannon, and now Jacqueline is just amazing. She's an awesome person.

Anyway, I'm just so excited to be doing this. The reason I bring it up is because it's going to be basically, educating physicians in the community about pediatric feeding disorder and feeding and swallowing difficulties. Because, I think, going back to what you're saying about how they don't really have a great grasp on development and they focus on other things, which is exactly what they should be doing Ð we want doctors to keep us alive, right? I mean, historically, feeding and swallowing problems have been acknowledged, or present in Ð not present, acknowledged in kids with pretty significant developmental disorders, or complex medical issues.

[0:18:58] MD: AP Down Syndrome.

[0:18:59] LS: Yeah. Exactly. Exactly. It's like, they know, ÒOh, that's part of what happens with the syndrome.Ó These typically developing kids, like my kids, they're typically developing. I mean, they have their quirks, but they Ð I'm sure they're going to listen to this one day. Hi, Ashley and Bryce. I love you. Yeah. I mean, they're typically developing. That was another thing that just, I think, threw off so many physicians was like, ÒWait a second. They don't have Down syndrome. They don't have cerebral palsy. There wasn't this significant history in the family with any genetic disorders, anything like that.Ó That's another thing that I'm just excited about, sharing the knowledge and the evidence base for is these kids that have these complexities that are typically developing.

[0:19:44] MD: I love that Feeding Matters is branching out and putting focus in that critical needs area. Folks, if you are listening and you too are frustrated with the lack of education in your community around PFD, you can schedule a few minutes on your lunch break. Or if you're in home health, do a drop-off, or a drive-by of Feeding MattersÕ literature to a pediatrician's office. Those little moments, those Ð and reach out to them, because they will train you in what to say and how to do it, but those moments are impactful.

One of the suggestions that I give and that I've given for years is when you have a patient that has a new diagnosis, and it's maybe your first time working with this pediatrician's office after you've done the report, write up your report, write up your plan of care, staple it together, hand deliver it to the pediatrician's office. Ask to speak to the referring nurse. Ask to speak to the pediatrician's nurse, especially if you need referrals out to an allergist or an ENT. And bring donuts, or something. If you feed them, they will come.

[0:20:54] LS: Yeah. Awesome.

[0:20:54] MD: Do you remember My Big, Fat Greek Wedding and they're like, the man is the head of the house, but the wife is the neck and she tells him where to look? Dude, the nurses are the neck, okay?

[0:21:04] LS: Oh, so true.

[0:21:06] MD: So true, right? I don't say this, just because I have two sisters who are nurses, but like, I know. But if you lead with kindness and seeking to understand, instead of just living in the frustration and trust me, I have enough Irish in my blood that I can live in the anger. I mean, dark Irish, we are what we are.

[0:21:28] LS: Did you say dark Irish?

[0:21:29] MD: Dark Irish. That's what my dad called us. We're dark Irish. I'm pretty sure, there may or may not have been a body buried once upon a time on somebody's property.

[0:21:40] LS: Just a warning.

[0:21:41] MD: Just a warning. That's a story for a different day. But, I get that and I commiserate with that frustration, but this is something that we can do that's actionable and joyful and can turn the tide. There's that.

[0:21:53] LS: Yes. I love that you said, approach the various disciplines and anyone really with kindness and understanding, because that Ð I mean, most of the time, I would say, 99% of the time, the people who are in the field of helping people, so medical professionals, healthcare professionals, physicians, all of us, it's like, we all just want to help, right? We all just want to make a life better and help their little light shine. Yeah. I think that if you come from a compassionate perspective and trying to educate in a gentle way, that I agree. That's the way you should do it.

[0:22:36] MD: Yes. Yes. If you would, as we've been called to help be healers. It's our job to Ð and I don't do the healing. I just facilitate the opportunity for that to occur. In this walk of yours, that's so deeply personal and soulful. How did you come across Gelmix? How did that enter into your life?

[0:23:00] LS: Yes. Well, okay. I resigned from the hospital because I felt like, I was just watching my kids' lives go by. I was very, very career-driven and again, took on a lot of responsibilities at the hospital that I was so thankful for, but I also was just burning the candle at both ends. I decided, you know what? My kids are young once. They had a lot going on at that time. I thought, I need to take a step back and just be able to focus on them. What I wanted was more time. I still wanted, obviously, to be a speech pathologist and be professional and help people in that way. Like I said, I started my own business and I also did a lot of home health. I worked for another organization. I saw several kids for in-home health. That was an excellent opportunity, again, for getting the perspective of how things happen in the home setting.

Then, the pandemic hit and I thought I was going to poke my eyes out, sitting in front of the computer all day long. That was such a hard time. I know, everyone says that and everyone has their own perspective of why that was so hard. That was so hard. I just got to a point where I was like, I don't feel I'm helping anymore, doing telehealth visits and things like that. When I worked at the hospital, Melissa, our COO, she had done site visits and she had come to Phoenix Children's Hospital.

This was probably in 2011. The company got started in 2010 with Gelmix. Anyway, so I had met her and I just really loved her energy. I believed in the product. We use Gelmix and Purathick at Phoenix Children's extensively. I also was at the hospital when the whole debacle with Xanthan Gum thickener came. I have been in the field, and you're probably the same way, long enough to see the pendulum swing. It was, okay Ð
[0:25:01] MD: Did you just call me old? You called me old. I love you. Sorry.

[0:25:07] LS: Accomplished and experienced.

[0:25:10] MD: I'm just messing. That's why we have Botox, and mine was freshly done.

[0:25:17] LS: Man, I need to get on that. Anyway, so Ð

[0:25:19] MD: IÕm so right now.

[0:25:21] LS: Yeah. You look amazing.

[0:25:23] MD: Botox.

[0:25:25] LS: Oh, gosh. Anyway, so I definitely have been through the various perspectives and I feel like, I have a strong opinion that thickening can be helpful when other opportunities or other strategies that we have in our toolbox aren't effective or aren't consistently effective.

Anyway, so I reached out to Melissa and I definitely feel like it was a God thing because I had been praying about wanting to do something different, wanting to help. I feel, when I'm not helping, I feel really down. I feel really down when I feel like I'm not contributing. Whether it's to my family, or to the world, or however it may be.

Anyway, so I reached out to her and I said, ÒI'm looking to do something a little different. Do you remember me?Ó She said, ÒWe were just talking about hiring a speech pathologist.Ó I definitely think it was a blessing, and we went from there. I started with them part-time and then went full-time, and here I am. It's just been a really neat experience, because like I said, I believe in the products, the whole company, which is small, is just made of people with integrity and people who want to help other people.

That's another thing that I've been so proud to work for the organization because they know what amazing products Gelmix and Purathick are. They know the benefits and how Gelmix in particular can get infants oral feeding. Gelmix can give them those oral feeding experiences to help with oral feeding and oral motor and oral sensory development. They want to get it into everyone's hands who needs it. They really are doing a lot of things at a national level to try to just get it covered by insurance. We have a discount program that I can talk about a little bit more that helps get our products into the hands of low-income families.

[0:27:30] MD: Yes, yes. We have to go there. I got to be honest, this is tricksy, the conversation that we're about to have, because of what you just alluded to. We have been around long enough to see where Xanthan Gum was pulled from the market for children one, or even two years and younger, because there is the research to talk about where it can trigger necrotizing enterocolitis within the small intestines, specifically at the watershed region, between the duodenum and the jejunum, where those two sections. Because you have three sections. You have your small intestines. Here's your anatomy lessons, folks.

You have the duodenum, the jejunum, and the ileum. The duodenum is that first portion after your stomach. Now, in that section, your body is still breaking down the food. Your stomach hasn't completed the process. The duodenum actually pulls in some of your digestive enzymes. This is where the gallbladder and the liver actually contribute, and it breaks down the chyme. Chyme, chime. It looks like chime.

[0:28:34] LS: Chyme.

[0:28:36] MD: Chyme. It breaks it down further. Then in the watershed region, it's where it goes from break down, like digestion components to the absorption piece, right? That juncture is maybe not the sturdiest of designs for those that are predisposed to all you know what breaking loose is. That is the simplest terms that I can go with. Now, that being said, the Xanthan Gum thickener, absolutely has a purpose and a place in older populations. So much so, that in like, I can get out of the back. I'm actually getting ready to introduce, interview the founder of SimplyThick, also, in the future. He's coming on. Nicest guy you're ever going to meet. And he gives warm hugs. He's like Olaf.

I believe in a good hug. But there is a purpose and a place for it in our older populations, just like there's a purpose and a place for Gelmix and Purathick in our younger populations. Because not every infant, or toddler is going to be able to utilize different flow nipples in order to be successful, right? It's just a statement of fact, whether that be because of craniofacial differences, or maybe severity of a bleed, and now they have hemiparesis, or hemiplegia on one side. There could be a litany of reasons that it is indicated, and that is okay.

Give yourself permission that if your patient is struggling, or if your child is struggling on a bottle flow and a nipple and you just can't get it right, there are other options that are clinically indicated and warranted. One of the ladies I work with, her name is Sarah. She's brilliant. Sarah was talking about how we don't throw the baby out with the dishwater, or something like that.

[0:30:41] LS: Yes. Uh-huh. Yes.

[0:30:42] MD: Yes. I had forgotten that one. I was like, ÒWait. Why would you throw the baby out?Ó Literal Michelle. Then I like, ÒOh, yeah.Ó

[0:30:52] LS: I was going to say, you need some help from a speech pathologist with that non-literal Ð

[0:30:56] MD: I know.

[0:30:57] LS: Anyway, go ahead.

[0:30:58] MD: My oldest, he takes things so literally. But weÕre a little neurodiverse than our family, that the fact that I had to translate that one in my head and say, I got a good chuckle at my expense on that. I was like, ÒOh, snap.Ó Yes, so baby, bathwater, or dishwater. Also, why would you wash a baby in dishwater? I don't know. That sounds really gross in and of itself, but okay. Not my baby. That sets the preface. But can you talk to us, what is Gelmix that's not a cocaine bean, or a chocolate bean?

[0:31:33] LS: Oh, my gosh. That was all very, very well said. Yeah, I talk so much about that, because yeah, in my practice, you can try positioning strategies. You can try changing the flow rate. You can try side-lying positions. I mean, that's a position strategy. You can try pacing. I mean, all these different things. And they can absolutely be effective and they're the least restrictive, right? You do want to try the least restrictive things.
What I found was that the nurse feeds the baby and then the mom feeds the baby and then the speech pathologist feeds the baby, and then maybe a tech is feeding the baby. Not everyone is understanding the things that need to be put in place to feed this baby safely. What happens is that the baby is generally, they're having a safe feed, maybe one out of every 24-hour shift, or 12-hour shift.

[0:32:28] MD: I had a thought. Some people, and let's be honest, a lot of us don't actually get a pediatric feeding disorder class. Can you describe some of those positional strategies and why they're indicated because that would be really, really helpful for some of the audience?

[0:32:45] LS: Yeah, absolutely. First, swaddling can be so helpful for infants who have any weakness, or muscle differences. That's because you want a strong foundation in the trunk and the hips. That applies throughout our entire lives, right? Especially with infants and toddlers and kids as they're feeding, you have to have a stability in the core and at the hips. That nice, tight swaddle provides that stability for them. Then upright, semi-upright feeding has been demonstrated to be safe, because literally, if you think about your head tilting back, a lot of people feed a baby, maybe laying down, or they're holding them flat. The milk is just going to the back of the throat, their eustachian tubes haven't completely matured, and so, it's really easy for the milk to go into the eustachian tubes and cause ear infections. Then again, it's really easy to just have the liquid flow into the airway.

Typically, developing infants who don't have any feeding and swallowing problems, they might be able to keep up with maybe a faster flow rate, or a position that's not ideal for them. They might cough and sputter a little bit. They're okay, right? They're going to handle it. Any infant with any disadvantage, whether it be difficulties with breathing, or difficulties with their muscles, difficulties with their airway, that's breathing, cardiac difficult Ð I mean, all the things that can happen, they're not going to be able to be okay with those positions. The semi-upright swaddled position is ideal.

Then, there is a lot of research, too, on the side-lying position. When babies are feeding in a side-lying position, it literally allows their rib cage to move better and has been shown to help them coordinate that suck, swallow, breathe better, and so, they don't have as much of an opportunity to get uncoordinated, or incoordinated and then have those episodes of aspiration. Then in pacing, too, there's a lot of research on that as well and how helpful that can be. Like I said, it just is hard if the same person's not feeding the baby all the time. That's life, right?

[0:34:58] MD: Yeah. Then when I think about pacing and placing the bottle and like, I had a negative encounter with a clinical supervisor one time. I was a seed SLP, but she was still my superior and she told me I was pacing wrong because I was pulling the entire bottle out of the patient's mouth. I was like, ÒBut here's the catch. This infant can't breathe with the bottle nipple in their mouth. I need to get it out.Ó Then, lo and behold, the kid had laryngomalacia and tracheomalacia, and it was just de-stating and like, ÒRa, ra, ra, rawr.Ó All of these things.

I will never forget, it was in that moment that I thought, that's when I realized clinically, how one strategy can't be applied to everybody the same. Every child's unique etiology, or etiologies influences their treatments. It was just clear as day, remember thinking, okay, but that worked for this child, but it's not going to work for this child. Yes. It's okay to take the bottle out.

[0:36:07] LS: Exactly. Yeah. There are some infants that when you try to tip the bottle down and keep the liquid out of their mouth, they're going to keep sucking. They're not pausing to breathe. Yeah, you absolutely have to take it out of their mouth sometimes. That also just goes to show, I mean, definitely that not every strategy applies to every person, every infant, but also, that there's so many ways to mess it up.

It's like, that's what I would find is I'd put these strategies in place and post something at the bedside and even try to put it in order, so the nurses had to follow it. Then it was like, you'd go and you'd see someone feeding them and you're like, ÒNo.Ó And you could definitely hear those clinical signs. So frustrating. Again, that's another indication for thickening, because it's not a fail-proof method. I don't even know if that's the right way to say it, but it definitely can help. The bolus is heavier. It provides more sensory information to the airway, to the brain, to start that swallowing reflex.

It literally moves slower, so the baby has more of a chance, or the person has more of a chance to start that coordinated process of the vocal cords closing, the epiglottis folding over the airway, the upper esophageal sphincter opening, or being pulled open by the laryngeal vestibule. For younger kids, it's not as much like that. Their anatomy is situated to protect their airway more. But it can be beneficial. I just think that's so important for newer clinicians to know that it's not a black-and-white issue at all. It's not, ÒShould we thicken or not?Ó ItÕs, ÒWill this be the right intervention for this particular child or person?Ó

[0:37:51] MD: That's where, if you are new to the world of pediatric feeding disorders, if you're new to the NICU, the PICU, the Floor. If you're new to home health, create your council of elders, reach out, or phone a friend. You will find that the bulk of us that have been around for a while, botox and all, we are here to serve and help shape your clinical reasoning skill. I don't know about you, but I love it when people reach out and call with questions, or shoot me a text, because it's just like Ð that means like, also, when they come back, I'm like, ÒOoh, I didn't suck. My advice was good.Ó Because there's always that fear of like, ÒOh, was that good advice?Ó

[0:38:33] LS: Totally. Yes, I'm so passionate about education and just helping, giving the information that I've learned over the years to others. Even though, I've had over 20 years of experience, I still am like, ÒOh, it's not the right thing? Okay, I'm going to look it up. I'm going to ÐÓ Do all these things. It's like, I know what I'm talking about. I just need to trust myself. But always be open as well to maybe, you're not right and maybe there is another perspective or another evidence base that you haven't discovered.

[0:39:03] MD: Yes. Okay. Then what to you are the signs and symptoms that you would say, ÒHey, this patient looks like we need to consider thickeningÓ?

[0:39:12] LS: Yeah. It can look different by age. Infants, their cough reflex is not fully integrated yet. Infants, they can still cough definitely, but a lot of the times they don't cough when something goes down the wrong way. What they tend to do is they tend to, like as you're holding them, you have your hand on their back, you can feel a rattling, or a congestion is what I call it. Then, they also tend to just shut down. Those are the little ones who might be falling asleep after the first two sucks, or three sucks. They may experience, this is more significant, but experience apnea, or bradycardia, or tachycardia. Essentially, their homeostasis is not stable. Yeah.

[0:40:00] MD: Wait. Translate bradycardia and tachycardia for those that are not familiar with those terms.
[0:40:06] LS: Yes. Okay. Apnea is they stop breathing. Tachycardia, their heart rate is up. It's higher than it should be, and their body's working too much and they really can't focus on the coordination of sucking, swallowing, and breathing. Then, bradycardia is when it goes down, their heart rate goes down. Then there's tachypnea when their respiratory rate goes up. All sorts of things from a homeostasis perspective, that as clinicians, we need to look at with infants because they have to breathe first and they have to maintain homeostasis. Swallowing and feeding is secondary. As much as we can do, as clinicians, to maintain and support homeostasis and breathing, the better.

Sometimes, young infants will show those very scary symptoms of their bodies going out of homeostasis. Like I mentioned, sometimes they just shut down and they stop feeding, or they stop sucking. The natural tendency of a lot of nurses and feeders in general is to be like, shaking the bottle in their mouth, tapping them, trying to get them to take more, take more. Everyone's volume-driven because babies need volume to grow, right? But it's not a quality feat. If they learn over and over and over, that something happens wrong. I mean, first of all, their muscles are learning the wrong thing, right? They're establishing a motor pattern of aspirating, or experiencing incoordinated swallowing and sucking and breathing. I totally just lost my train of thought.

[0:41:41] MD: Welcome to the club. That's me. That happens all the time. Okay, but that's perfect, because I had a question for you, or just a moment. Folks, if you're in the hospital, it's easy to tell if a patient is tachypneic, or having a brady, or those moments. If you're home, if you're in home health, if you're in an outpatient clinic and you don't have the luxury of having everything right there, you're looking for color changes in the patient, in the toes, cheeks, fingertips, look at their ribs, look at their clavicle to see if you can see muscle pulling inter Ð if you got a baby that's got intercostal breathing patterns, this is scary. This is bad news bears.

Or, if they're just holding their breath and you've got your hand on their chest and you're like, ÒUm.Ó Yeah, it makes me think of my husband when he snores at night, even though he swears he doesn't snore and he swears, I'm the one that snores. But I'm laying in bed and I'm like, ÒOkay, we should be breathing?Ó Yeah. Just like elbow. You can't elbow a baby. But, I mean, maybe elbowing your partner.

[0:42:44] LS: Yeah. No, that's a great point. That is where my train of thought was going. Sometimes it looks like these major events. Then other times, it feels, you can feel it on their back, the congestion. That's not a science, right? Cervical auscultation is also not a science, but there is some information to support doing that. Yeah, if you're feeding a baby at home and you don't have any devices to support your guesses, the perioral cyanosis, so sometimes they might get a little blue around the lips. Sometimes they might get a little blue around the forehead and the eyebrows.

Color changes, even just redness. Sometimes if they get red, or they get splotchy, and sometimes eye-watering. There are a lot of infants who have silent aspiration and that's something that I feel like, is debated in our field. Oh, silent aspiration, they didn't cough. It's like, yeah, they didn't cough, but as a trained professional, I can still tell that they had something going on, because of these subtle changes that you're seeing.

Then, of course, coughing and choking. But again, infants tend to just stop feeding. Then in older children, even out of the infancy stage, coughing and choking, it can also look like frequent respiratory infections. Kids who sometimes are diagnosed with asthma and it's like, once they get on a regimen where they're safe, they don't have asthma anymore. It's really interesting. Those kids that come in, or that you see that have a longstanding history of, ÒOh, they had RSV multiple times this year and they had pneumonia.Ó I mean, not just pneumonia.

[0:44:19] MD: Upper respiratory infections. Bronchiolitis. They have bronchitis again. Well, how many times can this kid get bronchitis?

[0:44:27] LS: Exactly. Yeah. ÒYeah, they always sound like that. They always sound junkie.Ó But it's like, wait a second, it gets worse when they're feeding, or when they're eating and drinking. Yeah, those are definitely some, some indications. A big thing, too, is volume limiting. Infants, when they're having difficulties with feeding, whether it's aspiration, or not, they tend to just take the minimal amount and that can be due to so many different things. GI things, respiratory things. But they tend to just not take the amount that they're supposed to take.

That's not always the case. You definitely see kids who are taking all the volume they need and they're just continually aspirating. But yeah, sometimes volume limiting can be a factor. Then as kids get a little bit older, too, and they start having more a say, right, in what they eat and don't eat, feeding difficulties. I've seen several children who it's like, ÒOh, they're a picky eater. Oh, they only eat this one type of food.Ó All the things that look super sensory that definitely still may be sensory, it's like, ÒOh, they also have been experiencing dysphagia since they were born.Ó Once you get that right, it's like, those feeding difficulties tend to improve. Really, really interesting.

[0:45:42] MD: We have to listen to what they're telling us, even when they can't tell us. That's the biggie. There's populations where you're going to have increased prevalences, but you got to know what you're looking for. Within individuals that have Down syndrome, there is an increased prevalence of having a laryngeal cleft. Oftentimes, these are the little ones that, and I've seen it a couple of times over my years, that they do great with purees, they do great with maybe home milk, or a PediaSure. But if you give them water or juice and you go from an itsy level one to an itsy level zero, then they start coughing, and sputtering, and they intrinsically know something's not right. They refuse that thinner viscosity.

But home milk and the PediaSures are just a little bit more, right? When you send them in, also, they tend to have upper respiratory infections. You have to get them into pediatric ENT who knows what to look for because not all pediatric ENTs are your aerodigestive tract specialists. You have your pediatric ENTs who focus primarily on ears. That is a skill set that we absolutely need, but I don't want the ear specialist looking at my patient when I'm worried about their throat. That's where the onus is on us as the clinician that's requesting the referral, to know your community partners and to say, ÒHey, this is the person that you really need to follow up with.Ó

I had four thoughts on my head at the same time. Let me try to connect them. I have heard younger clinicians ask me, and in truth, I have struggled with this response. Well, ÒHow come we can't just use rice cereal or oatmeal cereal? How come we can't just use applesauce as thickeners?Ó Or, ÒWhy can't we just use baby food as a thickener to make the formula thicker?Ó

My informed triangle tells me that rice cereal can increase arsenic exposure. Oatmeal cereal can increase iron levels, as well as constipation. Then I go down that rabbit hole. But edumicate us. Make us better.

[0:47:53] LS: Yes. Okay. I'm so glad you brought that up, because, yeah, rice cereal has inorganic arsenic that's difficult to measure and the American Academy of Pediatrics came out and said, ÒYou know what? Let's just ÐÓ At first, they said, ÒLet's limit the amount of rice cereal products that infants have.Ó Then they said, ÒJust don't use rice anymore. Use oatmeal cereal.Ó You'll find several manufacturers stopped making infant rice cereal, because of that reason.

Oatmeal cereal seems healthy, it's oatmeal. But there's a variety of problems with it. One is that it has a lot of calories and people think, ÒOh, but the baby needs to gain weight, so let's give them a lot of calories.Ó But they're empty calories, right? They're not the calories that the infant needs from their breast milk, or from their formula that's nutritionally complete with all the vitamins and the minerals, and the, again, the ratio of fats and things like that that they need. It's just carbohydrates. That's all it is. Yeah, it might make them gain weight and actually, can predispose them to having diabetes and cardiovascular disease.

If you're giving a typically developing infant a little bit of oatmeal every now and then, mixed with their breast milk, or mixed with their formula to just give them some spoon feeding, not a big deal. Or some families put it in their bottle at night to help them go to sleep, so they'll still stay fuller longer. That's not a big deal. When you have someone who requires oatmeal cereal for thickening purposes for dysphagia, or even for reflux, then that becomes problematic, because they're going to be taking in so many excessive carbohydrates and calories. The other thing about oatmeal cereal is that Ð

[0:49:34] MD: You triggered a connection. Folks, this is the same thought process from a BMI perspective, when you're looking at toddler and older children that may only eat four foods. But if those four foods are chicken nuggets that are high fat and french fries from certain fast-food restaurants and PediaSure, then if we look at them from a metabolic perspective, and this is why Ð when I get really impassioned, I tap on things and I'm going to make everybody's ears rattle, but Ð then I clap. Damn it. Sorry, folks.

IÕm like, ÒAh.Ó This is the southern Baptist, I have a pulpit and it is my desk. This is why you need a complete metabolic panel, because we truly need to work with a registered dietitian to understand what do they look like? Where is their protein, their vitamin D, that neurodivergent children Ð
[0:50:29] LS: Those micronutrients. Yeah.

[0:50:31] MD: Yes. They don't always have sufficient levels of, because they have limited access and exposure to natural sources, like sunlight because of their baseline needs, or differences, or truly, they may have an underlying metabolic disorder that needs intervention. When she's talking empty calories, yeah, they're going to gain the weight, but is it the right weight?

I say this after having basically eaten all of the cheese and had all the things for two weeks straight. Were they empty calories? Yes. Was my digestive system happy? No, because I am lactose-intolerant and do not have a gallbladder. But my tongue, it was very happy.

[0:51:18] LS: I cannot stop eating the dang Christmas cookies, the sugar, the coating, and the sprinkles. I love them.

[0:51:26] MD: See, you're the sweet person and I am an umami person. Yeah. 

[0:51:31] LS: Oh, so sweet. I hate it. Yeah. Every night, I struggle. I'm like, all day, I avoided the sweets and then at night I'm like, ÒGive me the sweets.Ó It's crazy. No, I hear you. That's such a good point. They're not getting the micronutrients. Okay, so the other thing that just goes right along with that is that, so you're adding oatmeal cereal to a bottle, right? Let's say, formula because you can't add oatmeal cereal to breast milk for thickening purposes, or for reflux purposes.

[0:51:59] MD: And why?

[0:52:00] LS: Yeah. You can't add infant cereal to breast milk, because breast milk has a variety of different dynamic enzymes. One of them is called amylase. Essentially, those enzymes break down starch. If you tried adding a cornstarch product, or an infant cereal product, the breast milk is going to literally break it down, and then it's not thick anymore.

Again, for those families who are offering infant cereal mixed with breast milk by a spoon and it doesn't need to be thick, that's fine. They can do that. But when you need it to be thick for whether itÕs reflux, or I should say, regurgitation, or dysphagia, it negates the purpose.

I remember at the hospital, trying to in the NICU, trying to keep these babies on breast milk and trying to be like, ÒOkay, if they can eat it in five minutes, then it's going to be fine for five minutes.Ó But that's just not the case and that's too unpredictable. Anyway, so definitely don't use infant cereal in breast milk when you're trying to thicken liquids for regurgitation, or dysphagia.

Say, the baby needs to take three ounces of their formula, and you want to add oatmeal cereal, right? Maybe you're thickening to a level two mildly thick consistency. You're adding several teaspoons to per ounce. Now, you don't not just have three ounces. Did I say three ounces, or two ounces? I can't remember. Let's go with three. Say, you have three, and the baby needs to take this three ounces of their formula because that's where the micronutrients are. That's where the vitamins and minerals and the fats and all the things are, the carbohydrates that they need. Now, you're adding bulk, right?

You're adding a half-ounce, let's say, to this volume. Now, they have to drink more volume to get all the liquid that they need. That rarely happens. Again, most of the time, these little ones are limiting their volume. They're not taking their three ounces and now you've added and now that they're taking three and a half ounces, or whatever it ends up being, and then they're not taking that full volume. Maybe they took one ounce.

Well, how do you know that they got the nutrients that they needed from the milk because they filled up on the bulk? It's a big problem. I think, historically, I know historically, oatmeal cereal has been used because it's cheap, it's easy, everybody knows what it is. Sometimes you have to, right? Sometimes there are situations where a little one who needs to be on thickened feeds can't access Gelmix, or for whatever reason, they can't get it. Sometimes, you have to. But, there are definitely a lot of advantages of using Gelmix over infant cereal.

That's because Gelmix is made of three ingredients. So, organic tapioca, maltodextrin, organic carob bean gum, and calcium carbonate. That's it. It doesn't add calories. I mean, it adds 10 calories, but they're insignificant, right? It doesn't add calories. It doesn't displace the caloric density, so it's not going to, basically, have the impact that the cereal does that I just mentioned, as far as volume, or calories, caloric density. That's the same with thickeners, Xanthan Gum thickeners. Again, we should not be using Xanthan Gum thickeners in young children. But say, you add a Xanthan Gum thickener to maybe a PediaSure, or an adult supplement, those are going to basically, you have to increase the caloric density of the liquid to which you're adding it because it's empty calories. Just a lot of disadvantages of other thickening agents. That's the majority of the information with oatmeal.

Another thing to consider anytime we add anything to an infant formula or breast milk is osmolality. Osmolality, all the dietitians are familiar with that term, and as speech pathologists, we're not as familiar with that term. Osmolality is the number of molecules and ions per kilogram of a solution. Excessive osmolality, too much osmolality can negatively affect intestinal health, and also, affect the gut microbiome and stool consistency. All things that can contribute to bowel infection, bowel death, all bad things, essentially. Infant cereal adds a pretty significant amount of osmolality to the feed.

Essentially, the American Academy of Pediatrics recommends that osmolality not exceed 450 mOsm/kg for breast milk or infant formula. The average osmolality of breast milk is around 300 mOsm/kg Infant cereal increases osmolality by 30 mOsm/kg for every half teaspoon of infant cereal added per ounce of liquid. That's pretty significant.

[0:56:51] MD: That's a lot of math. I'm an SLP, so I don't do math. That is way too thick, right? What I need to know is it makes Ð

[0:57:02] LS: ItÕs not like, necessarily, it's exceeding the osmolality recommendations, which can then predispose the infant to having problems with their gut.

[0:57:09] MD: Okay, so in my brain, I turn this into bubble tea comparisons. Because I'm visual, right? I have ADHD. We're just going to roll with it. It essentially means, there's too many of the bubbles in the tea that it displaces the tea and it makes it bad, which can cause gut death, gut blockage, and bad things will happen. Is that it in a nutshell? Is my bubble tea analogy okay?

[0:57:36] LS: Kind of the displacement, I think it's okay. But this is like, if you think of what's in the formula and what's in the breast milk, right? It's vitamin, nutrients and it's water and it's fat. That makes up the osmolality of a solution of a liquid. Then when you're adding these empty calories and starch and carbohydrates, you're increasing what shouldn't be in there. You're making it too dense almost. Not too thick, but too dense. Then the infant's gut can't absorb all of those nutrients. It can lead to a lot of issues.

[0:58:18] MD: So, me when I have too much cheese. Now I understand you. Yeah. Because cheese is too Ð

[0:58:22] LS: Oh, there you go.

[0:58:23] MD: But give me gooey brie cheese with some fig spread and I'll eat the whole thing. Then my stomach says, bad choices were made. Okay, IÕm with you. ItÕs a combo of brie and bubble tea.

[0:58:37] LS: Right. For an adult who has, essentially a normal GI system, like, your gut can handle that. Yeah, you might have some gas, or whatever, constipation, or diarrhea, or whatever the GI symptoms are. But little ones, infants, their gut can't handle that. And so, they end up having pretty serious and sometimes life-threatening issues. If you add up the amount of cereal that's needed for a little one, taking even a slightly thick, or a mildly thick consistency, or a moderately thick consistency, it can become excessive. The osmolality concentration can become excessive.

We had Gelmix tested in a lab to determine how it impacted the osmolality of a ready-to-feed 20-kilocal formula. That means it has 20 calories per ounce in the formula. The formula showed a starting osmolality of 322 mOsm/kg. Remember the AAP, says, it shouldn't exceed 450. The ready-to-feed formula, it's good to go. When you add 0.3 grams of Gelmix, which 0.3 is about what you would need for a slightly thick consistency, the osmolality increased by 10 mOsm. For a mildly thick, or a nectar consistency at 0.6 grams of Gelmix, it increased to 20. Then for Ð

[0:59:55] MD: If we translate that over to IDDSI, so a one and a two?

[0:59:58] LS: Yes. Yes. Slightly thick is a level one. Mildly thick is a level two. Anyway, when you do the math, basically, increasing the osmolality by 10 mOsm and then 20 mOsm, Gelmix added to standard ready-to-feed infant formula does not exceed osmolality recommendations. That's another big piece that people don't always think about. They think about, oh, well, it's excessive calories, and maybe my baby's going to get bad, or sometimes infants can experience constipation. A lot of infants, actually, experience constipation with cereal, but it's not always a documented or research-based finding. Anyway, so it can become really problematic. A lot of people don't think about that. But Gelmix does not exceed osmolality when mixed to the recipes that we provide.

[1:00:47] MD: That's amazing.

[1:00:48] LS: It is interesting, isn't it?

[1:00:49] MD: You guys have been gracious enough to, I know, donate a fair bit over to the Dysphagia Outreach Project (DOP).

[1:00:55] LS: Yes. We love them.

[1:00:57] MD: Yes. DOP in the house. Folks, if you don't know who Dysphagia Outreach Project is, Dysphagia Outreach Project was the brainchild of Hillary Cooper and friends. They set it up such that if you have a patient across the life continuum, NICU to end-of-life care, and they need support, whether it be Gelmix, or a blender, or a food processor, or they need, I don't know, they give away so much. These entities donate to them and the licensed clinician, the therapist can fill out an application. It goes before a review committee and they will give it to the patient, or the caregivers to help them in the pinch. It's free.

The board volunteers their time. The committee people volunteer their time. It truly is. It's a blessing to those who can't afford it. The other side of this is that so many physicians are not aware that there are alternate organic plant-based products available. So many people quickly go to a sugar-based formula, right? When there are things like, real food blends, or I'm just brain farting, because it's the end of a day. It's a green bag and it's garbanzo bean-based. Why can I not think Ð IÕm like, I can see it. Daggamit.
There's actual organic plant-based products out there that are like formulas that insurance can pay for. Gelmix and Purathick are some of those. If you have a patient that you work with and they're recipients of WIC, you can write letters of medical need and that in conjunction with the physicians. Sometimes they'll purchase the products. I mean, there are options available if your family that you're working with can't afford it. Let's be honest, thickening can be expensive.

[1:02:55] LS: Mm-hmm, definitely. That actually makes me think about our amazing program called We Care. In the beginning, I alluded to our organization wants to get Gelmix and Purathick into the hands of people who need it, because they are healthier alternatives. Gelmix is actually the only thickener on the market that's safe to use for infants under 12 months of age. It's the only one. It's also the only one that's safely and effectively thickens breast milk. Gelmix is indicated for regurgitation and for dysphagia.

There are some evidence-based articles that talk about the research behind thickening and also, NASPGHAN and SPGHAN, they're the North American Society for Pediatric Gastroenterology and Hepatology. Then ESPGHAN is the European Society. Essentially, they came out with clinical practice guidelines in 2018. Clinical practice guidelines for reflux. They stated that one of the first-line therapy approaches should be thickening.

They also indicate in their paper that Caršbin gum thickener is the only thickener that's suitable to use for breast milk and breast milk is best, right? We want to keep infants on breast milk as much as possible, as much as they can handle it. Then Gelmix is the only Caršbin gum thickener on the market.

[1:04:13] MD: Well, can you send me those articles, so I can add them into the show notes for folks, because that would be profound?

[1:04:19] LS: Yes, yes. I do free education sessions as well through the organization, where I present all the information about thickening. I mean, obviously, I'm going to be talking about our products. But I'm giving you real information about how they compare to other thickening products and why they're better. Yeah, I talk a lot about the different research that's out there about it. Yes, I will do that. Our program is called We Care.

[1:04:44] MD: Can you do this online for my students? I mean, I know you're an Arizona, but this would be so freaking cool for my grad students.

[1:04:52] LS: That's what I do. That's what I do. That's my jam.

[1:04:56] MD: Okay. Well, now I'm like, wait. Okay, so in my spare time, because we have that, I am co-chair, or I don't know what my technical title is for SHAV, the Speech Hearing Association of Virginia. I volunteer as the co-chair for their special interest group, support group. I'm cool. I know words. We do research, like presentations once a month. Ed Bice does the adults and I do the not adults. But it would be lovely to have you there, too.

[1:05:25] LS: Oh, yeah. I would love to do that. Yeah, that's great. Yeah. That's one of the, again, another advantage of our company, I think, is that they hire a speech pathologist and a speech pathologist who's had a lot of experience and has had hands-on experience with using the products. Yeah, definitely, I can do that. Anyone who's listening, too, just go to our website, which is www.healthierthickening.com, or www.gelmix.com. There's a place where you can sign up for a free webinar.

Okay. So, the We Care program, basically, Melissa in particular has really worked very hard at a national level to try to get entrance coverage for thickener. The issue is that all thickeners, no matter what they are, are covered under one code, and the code is called B4100. The code reimburses based on weight. That's why your nursing homes and places like that are always offering, or I shouldn't say always, are frequently offering cornstarch powder thickeners, because they get reimbursed, right? There are so many disadvantages of cornstarch thickeners, and so many advantages of Purathick over cornstarch products. Anyway, so that's why those products get reimbursed.

Sometimes, our products, which are very light, right? There's only three ingredients. It's a fine powder. It just dissolves into the liquid. They won't get covered for that reason. Melissa's worked very, very hard at a national level to try to get this changed. She has made a lot of impact in several different states. In fact, Colorado is one state who the Medicaid program was not covering our products, and now they do. Just really exciting. So for those people who qualify for Medicaid, but can't get it covered in their state, they can apply for our We Care program.
Essentially, our program offers a 40% discount off of the retail price of Gelmix and Purathick. It really can make a big, big difference for someone. Can be a game changer. Then, yeah, we always advocate for Dysphagia Outreach Project for those families if that's not enough.

[1:07:40] MD: Have you heard of FARE?

[1:07:43] LS: No.

[1:07:43] MD: Okay, FARE is the FARE Project. As many emails as I get from this lovely organization. Let me see, Functional Formularies. That was the great Ð that was, sorry, garbanzo bean one that came up in my mind. FARE is food, allergy, research, and education. They're an amazing entity that's also advocating in conjunction with, I think, Feeding Matters is behind it. There are a couple of other programs that they're trying to get a bill passed. It was tied up in a Republican Senator's office in North Carolina. Thank you. If you're listening and you're in North Carolina, message me.

The bill would make it mandatory to cover for insurances, to cover, essentially, and parental fees. Words are hard. By insurance across the life continuum. It seems to me that this would be a logical support would be to have this embedded within, because volume-driven is not clinically indicated. It's quality, not quantity. But while they're requiring alternate means of nourishment and while working for, the oral stage, it just seems like that would be a logical Ð just a thought to give to the COO, because that seems like, a hand-in-hand partnership.

[1:09:06] LS: Oh, absolutely. She might even be familiar with it. She's been working really closely with Feeding Matters, too. I will definitely pass that along. That's interesting.

[1:09:16] MD: That's a really big thought. Then I had one other one, but it will come to me and I will message you later.

[1:09:21] LS: One other thing I wanted to say Ð

[1:09:23] MD: Yeah. Yes, yes. Go ahead.

[1:09:25] LS: You were talking about Xanthan Gum thickeners and they have a place and I agree. However, I would advocate that Purathick is a perfect alternative to Xanthan Gum and cornstarch thickeners. That's because, Purathick also, is only three ingredients; organic tapioca, maltodextrin, tara gum, and calcium carbonate. It does not displace the caloric density of the liquid that you're adding it to. It does not displace the volume. It does not have a negative mouth feel, so it's not slimy like Xanthan Gum thickeners can be. It doesn't leave a residue in your mouth. It just literally dissolves into the liquid and it's smooth. It's also not grainy like cornstarch powders can be.

Purathick stays the same consistency over time, which is so important with anyone who wants to mix up a drink in the morning and then have it 10 minutes later, or an hour later, or 24 hours later. It stays that same consistency over time. It's very, very palatable and cost-wise is really similar to Xanthan Gum thickeners. Definitely, check out Purathick if you're considering using another type of thickener.

[1:10:37] MD: I with my whole heart have to tell you, thank you. The amount of notes that I have taken, also, osmolality. This is a word I'm going to need to be practicing. Thank you for being so willing to tie your time and share this, because that is Ð you are lifting us all up. Thank you.

[1:10:57] LS: Yay. That's my goal.

[1:10:59] MD: Yes. Okay. Now, where can folks reach you and where can they find you and/or Purathick, Gelmix on the land of social?

[1:11:11] LS: Yes. Okay. We do have a Facebook group, a support group. We are also on Instagram.

[1:11:18] MD: What is your handle? Oh, I found it. @healthierthickening. There we go. Following. Got it. Oh, look at there. There's Jacqueline Peterson. I love her.

[1:11:28] LS: She's awesome.

[1:11:31] MD: Okay. We're on there. Then, do you have your own email address that you'd be willing to share or a point of contact where folks could reach you? Yes.

[1:11:43] LS: My email address is lstevens@healthierthickening.com.

[1:11:51] MD: Thank you. Now, I'm throwing this on you at the last minute, but if folks are listening and they have a little extra love money lying around, is there a location, or a place that you'd recommend that they donate it to help someone out in need?

[1:12:06] LS: Oh, definitely Dysphagia Outreach Project.

[1:12:08] MD: Yay, beautiful. Folks, you know, Erin and I can be found on Instagram @firstbitepodcast. Also, @erinforwardslp and @michelledawsonslp. We have our own little account spines, basically, food and the kids. Let's be honest. Not related to the First Bite Podcast, because products, services, and all things are different. Be sure to check out the First Bite boutique. But again, totally separate entity and organization. You can find our brand-new gear. We have ourÓ fed is fed is fed" sweatshirts and T-shirts are Chase the Swallows sweatshirts.

[1:12:44] LS: I love that one you're wearing.

[1:12:46] MD: It's got a colon on it. Then the connect first, and we have more coming. We have one that's a #SLPsOfFaith and I'm very excited about that.

[1:12:55] LS: Awesome. That's great.

[1:12:58] MD: Yes. But check us out there and then, thank you for tuning in and supporting First Bite, and building our little community, and making us stronger. Lindsay Ð

[1:13:07] LS: Yeah. Michelle, you're doing amazing things. Thank you so much for this opportunity. I just am beside myself with respect for you and what you're doing, and just grateful for this opportunity. Thank you so much.

[1:13:20] MD: Thank you. God, thank you for letting me cancel four million times and then pay the chimney guy. 

[END OF INTERVIEW]

[1:13:26] ANNOUNCER: Thank you for joining us for today's course. To complete the course, you must log into your account and complete the quiz and the survey. If you have indicated that you are part of the ASHA registry and entered both your ASHA number and a complete mailing address in your account profile prior to course completion, we will submit earned CEUs to ASHA. Please allow one to two months from the completion date for your CEUs to reflect on your ASHA transcript. Please note that if this information is missing, we cannot submit to ASHA on your behalf. Thanks again for joining us. We hope to see you next time.

[1:14:06] MD: 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, a 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]

[1:14:59] 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 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 266		Transcript

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