[00:00:00] Speaker A: Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders. Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free
[email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.
[00:00:29] Speaker B: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does matter.
[00:00:42] Speaker A: Hey everyone. Welcome to Feeding Does Matter. Hi, Haley. How are you doing today?
[00:00:49] Speaker C: I'm doing pretty well. Jacqueline, how are you doing?
[00:00:52] Speaker A: Doing pretty well. I am really excited for this conversation because it's one of our favorite people. I will turn it over to you to introduce our guest for today.
[00:01:02] Speaker C: I'm so excited that we get to be talking with Dr. Anka Roberto today. She's one of my colleagues that I work with at the University of North Carolina Wilmington.
She and I actually both started working at UNC Wilmington at the same time. Wow. We came there in 2018 and we actually got to share an office.
So she's my, my roomie that we started. We started out together.
She is an expert in trauma and resiliency and she does some really great work with a therapy called emdr and she'll probably get to tell us more about that. And she's actually working with us on the consortium that we have for the Family Centered PFD Research Consortium.
And what she does with us there is that she brings her expertise in the trauma centered care.
And it's been really wonderful. So excited to welcome you here to talk with us today today, Anka. And she has some also some personal experience with having a child that's had some difficulties with feeding and some feeding differences and some medical trauma. So I'm gonna get started and just talking to Anka.
[00:02:28] Speaker A: Welcome, Anka.
[00:02:30] Speaker B: Thank you, guys. I'm excited to be here. Thanks for having me.
[00:02:34] Speaker A: Yeah, it's been so wonderful because you've interacted with Feeding Matters on a few different fronts.
[00:02:39] Speaker C: But.
[00:02:40] Speaker A: But then to have you on our consortium meetings and interacting in that way and just kind of even brainstorming with us, it's a whole new level and I love it. So grateful to have you here today.
Maybe to start, how about you share a little bit of your background and maybe your story with whatever you're comfortable with as an introduction. I know you have, you were a keynote presenter at Feeding Matters past conferences. But I think we have a lot of new listeners and maybe community participants that didn't get a chance to hear.
[00:03:11] Speaker B: Yeah.
[00:03:11] Speaker A: Your story.
[00:03:12] Speaker B: Yeah, yeah, for sure.
Yeah. I'm so thrilled to be part of these conversations with you all and aligning the trauma centered care, which I think is super, super essential.
And it's coming up more and more as I interact with consortium members. So I think it's a huge need that needs to be filled. So I'm glad to be here to talk about it a little bit.
Gosh. My story started 18 years ago when my. Almost 18 years ago when my oldest daughter Maya was born. She was a preemie. She was a 34 weeker with undiagnosed congenital heart disease.
So she was a NICU baby that was going to be just, you know, a grower feeder, a little bit of cpap. And at two days old, she, she had an echo that revealed a significant cardiac, multiple cardiac defects.
That's where my journey started very personally. Prior to that, I was a pediatric nurse working with children with special needs in the inpatient and outpatient center I worked for. It's pretty kind of cool. I worked pediatrics at NYU Medical center in New York City. Then from there moved into working as a public health nurse with an agency that serviced children with special needs. And it just was. I did a lot of case managing and educating and working alongside a parent and parent training. So it's kind of who I am, my DNA. Like before I even became a parent, I ran parent support groups when I was a nurse. I did lots of different things when I was in the nicu and then I became a parent and everything I used to teach all my patients and clients and parents, I had to use myself. So with that being said, it was an eye opener to be on the other side of the crib and I speak to that a lot.
So during Maya's open heart surgeries and recovery and waiting for her to grow and feed and all the things that you all know about, she had difficulty with, you know, just oral motor coordination. She had swallowing difficulties. They nicked her super pharyngeal nerves. So she had literal. She was aspirating on her feeds.
You know, she was NG tube for fed for a while. I was her home care nurse when I was her mom, which I'm sure lots of you guys relate to. And it wasn't until she was five that I started to learn a lot about trauma, informed care and what it looks like. And I was in grad school at the time and was learning emdr, which stands for eye movement desensitization and Reprocessing. It's a level A trauma treatment. And it was because of another tragedy that we lived through that I sought out an EMDR specialist for her to work on this other community tragedy where our family lived in Sandy Hook at the time during the school shooting, so was hopeful that they could help her process through that event. Well, when we brought her in for her EMDR session, what came up was her medical trauma.
[00:06:54] Speaker C: Wow.
[00:06:55] Speaker B: And prior to that visit, I remember she had an echo scheduled for a month after her EMDR session and so brought in for emdr. She did some EMDR on the medical stuff. So it was all. I think we had like four sessions before we went for her echo. And typically prior to the EMDR sessions, Maya would physically go into like fetal position on the table, have no language, not even look at the screen. They completely dissociated on the table. Now I know what that is. Right now I know. It's dissociation.
And when we went a month after her first, her first set of sessions, she was talking to the physician and she was looking at her echo pictures, pointing and asking, where? What, what, what is that? She's never done that before. It was just so mind blowing to me. And her cardiologist looked at me and he said, what, what's changed? She's so different. And I said, she's gotten trauma treatment. And he's like, well, what kind of trauma treatment? And I said, she's gotten emdr. And he had no idea what that was.
And to this day, I still think that's a thing. I think medical providers are not aware of the impacts that all these procedures or interventions have with the children that we birth and love and treat. Right.
Yeah. So actually, a colleague of mine and myself, we're going to write a book for providers on the impact of medical trauma on the brain and solutions.
[00:08:43] Speaker A: I love that.
[00:08:44] Speaker B: Yeah. Yeah. So it'll be a. Hopefully it'll be a medical textbook. I don't know. I mean, that's the hope. It'll be a.
My gosh, why am I forgetting the publisher Springer publication?
So.
[00:09:02] Speaker A: Yeah, because that's a way to connect the worlds.
[00:09:06] Speaker B: Yes.
Because I feel like there's lots of siloing. Right. So even for myself. So I have, you know, a couple kids that I'm treating who have had medical situations happening to them and for. With them and to them and to the parents. And I don't ever get referrals from primary care providers, which I don't, because I don't think they know. Like, I don't think that they know that, oh, this is a thing. I mean, Maya was at, like a major medical center right. In the United States that everyone knows of. And there wasn't one time that a provider had said to me, hey, have you thought about trauma treatment for her?
[00:09:51] Speaker A: Wow.
[00:09:52] Speaker B: Yeah. It was because of what I learned in my graduate program that I said, wow, well, I'm going to be doing this work. So now. Yeah. So I use.
I use sand tray therapy in my office, and children tell their stories in the sand tray.
Looks very different than working with adults. But lots of times, even if they have language, whenever that medical trauma occurred is typically where it stunted them developmentally.
So what we know, what. What literature says is that if there's a medical trauma, developmentally is where we kind of have to go in and help to reprocess the event. So I could be seeing. I'll tell you from my own daughter, right. She's 18.
When she gets stressed and anxious and she knows something's coming, she. She loses the ability to even communicate what her needs are because lots of her injuries were pre verbal.
[00:10:59] Speaker A: Yeah. Well, and that's. I mean, I think that's a really good point for people to consider as it relates to medical trauma.
Backing up a little bit. Maybe help go over what might be considered medical trauma and trauma in general. Just for anybody who may not be aware of that type of terminology.
[00:11:21] Speaker B: Sure. So medical trauma is. It's kind of subjective. Right. So we think about what's traumatic to one child may not be to another. What's traumatic to one parent may not be to another. I think we're all born. And there's some research around this, like some. We're all born with some sort of resilience, and I think there's some genetic correlations there that I would love to explore.
Yeah, yeah. So anything that's adverse. Any adversity. And I think that term comes up a lot in the consortium that I think is.
You know, I feel like the word trauma is almost stigmatized because it's such a bad word to people that they don't want to admit that they've been through a trauma. But anything that's out of the ordinary, anything that causes harm, anything. Anything that's harmful, anything that's hurtful, anything that causes the fight, flight, freeze response to be initiated for yourself or your child, if you notice for yourself as a parent that something happens and your heart starts to race, or you start to have difficulty breathing, or you start to dissociate and you're floating off into space. Those are all symptoms of an adversity affecting you in a way.
So for children, like for my daughter and for many of the kids I treat like, you know, if they spent any time in the nicu, even having CPAP up their naris issues around oral motor control, people sticking things in their faces, all those things, those are adverse experiences.
So. So if it feels, tastes, smells or looks like the event, lots of times the brain. There are two structures in the brain. There's the hippocampus and there's the amygdala. And the amygdala is where our internal smoke alarm goes off. It's like the, the siren for the brain and body of saying something is wrong, you have to fight flu, freeze. Some people even fawn where they feel like they have to make everything okay and fix the thing or a faint response. So that's the amygdala is the emotional kind of regulator of the brain. And then the hippocampus lives right next to it and that's where our memories are stored. So when we smell, hear, see, taste, sometimes even touch. Right. Tactile for kiddos.
If something feels like it did when they were two when something bad happened, their brain doesn't recognize it's today. Their brain thinks it's their two year old self.
And similar for parents. Right. So I'll give you an example. I'm going to Boston this week with my daughter for a cardiac procedure and I am anticipating when I get into the hospital, there's a coffee shop in their lobby and once I smell it, it's like woof. If I go to use the foam. Yeah. If I go to use the foamy purell, I know I'm going to be triggered. Not as heightened as I used to be because I've gotten some emdr, but it kind of comes back. I'm excited this year because I found out that the cardiac clinic and the whole cardiac center has a new building. So it's going to look different.
So I'm excited that I'm not going to be walking into the same lobby.
[00:15:13] Speaker A: Yeah. Something.
[00:15:15] Speaker B: You don't think of these things. Yeah. Because they really make a difference.
[00:15:21] Speaker C: Maybe they changed hand sanitizers too.
[00:15:24] Speaker A: Yeah. Maybe you won't have the same hand sanitizers.
[00:15:27] Speaker B: Maybe they smell like lavender or something. I'd be so happy.
[00:15:33] Speaker A: Well, and I know this is probably too much to get into in terms of like coping with activation, but what's something that you do as you're showing up and preparing yourself for being activated in a scenario like that?
[00:15:47] Speaker B: Yeah, for sure.
So I have prepped my body before this trip. So I have spent the week really trying to. When I'm not at work, I haven't been watching that much tv, I took a bath.
I'm going to get a massage on Friday.
So what we know is that the body keeps a score. If you haven't read that book, you should. It's by Bessel van der Kolk.
And it really. Our neurological system is so primed somatically, meaning like our bodies, that connection to our brain.
So we have to take care of it. Right. It's like the vessel that we need to hone in on. I'm walking slower. Like I walked to and from my office this morning because I'm trying to move my body more.
I'm on an anti inflammatory diet right now because that's been helpful for me. So no processed foods. Trying to really like you know, only carbs through vegetables and fruits, things like that.
That's been super helpful. And then I know when I get there, if I'm activated, I know how to initiate my own left and right. So the bilateralization, left, right, the movement of left to right. This is why walking is so helpful for us.
Any kind of movement from left to right actually helps our brain to move the thought or the memory from one side of the brain, across the corpus callosum, which is the middle, over to the other side of the brain. And when that happens, it's similar to like when we dream, sleep, and we're in rapid eye movement, we're doing this left, right. It's helping our brain process something that is going on with us. So I, I'm planning on bringing my walking shoes and I notice if I, if I walk, I. If I walk through whatever I'm feeling, I feel better. Like if I stand still and I'm frozen in it, it doesn't work for me.
[00:18:08] Speaker A: Yeah, I think that's probably a lot of people and it makes sense when you describe it with such a visual metaphor. I feel like that's really helpful to think about physically how the thoughts are, are going left to right like that.
[00:18:20] Speaker B: Yeah.
[00:18:21] Speaker A: And that type of coping and the different types of exercises, that's something that you do with our consortium a lot.
We knew that when we were starting a family centered research consortium with both families and individuals that we may have difficult conversations or conversations that would activate individuals within the consortium. And so I thought maybe share a little bit about either the exercises you do with them or even your thoughts on the consortium in general. And how you felt being a part of those conversations.
[00:19:00] Speaker B: Yeah, yeah, for sure. You know, I think it's.
I think as parents, Right. Of children that have had any difficulty in, you know, medically or developmentally or, you know, what have you. But I think we're. It's so easy to. For us to talk about the thing that's happening to our families, and sometimes we lose sight of how it can impact the person that's listening almost. I think we become desensitized to it. Like, even when I share kind of our story, I. I have to remind myself, oh, people are going to respond to that, Anka. Like, you can't talk about this really bad thing that happened in detail because it's not good. Right. It's going to put off some fire alarm. Fire. Fire sirens in their brain.
And I think the passion of the consortium and allowing them to kind of really take ownership and leadership has been so, so amazing to see and watch.
And I'm also recognizing how much they need the. This is what you do when you are activated, because I'm not sure how much they've had of that. And that makes me sad because they've been with medical providers their entire child's life, so how come nobody has ever taught them anything? Right.
So I just engage them. I kind of meet them where they are. I know the last time we met, I asked Jacqueline and Haley or I asked both of you guys what, you know, what the needs were. And you mentioned a couple things, and I, you know, helped them utilize an exercise that can allow for them to recognize their positive cognition. Because many times when we are in a place, place of taking care of our loved ones and nothing is working, we feel like there's this, I'm not good enough. I'm not doing enough. Right. That negative cognition that just feels like nothing's ever going to work.
[00:21:17] Speaker C: Yeah.
[00:21:18] Speaker B: And the more we struggle through something, the more that is built in our brain. So flipping that and recognizing, well, what. What do you want to believe about yourself?
What do you want to gain from an experience?
And how can we install that and make that really more true than the negative? Right. And when we do emdr, we're actually working on decreasing the negative cognitions.
Subjective unit of disturbance is what we call it the suds. And we're trying to increase the validity of cognition. So the positive cognition, that's the thing we're feeling, we want to know about ourself. Usually that validity of cognition or the VOC is low.
And the negative cognition, the subjective unit of disturbance, is High, meaning I feel more. 8 out of 10 is my suds rate and my VOC is a 2. But you really want the VOC higher and the suds lower because those things take over our thought processes. And when we help to reprocess some of the memories that are associated with the bad thing that's happened to us.
By doing the left. Right. Bilateralization, we really can allow our brain to heal. And that's. That's the essence of EMDR is taking the adaptive information processing model and taking a maladaptive coping strategy that we've had, which could include the fight, flight, freeze, or whatever it is for folks. Right.
And flipping that around so that we can get rid of the maladaptive coping strategy and come up with some adaptive ones that can help us.
And some of that looks like taking a step back. Right. I myself am guilty of this. Right. When I feel stressed, I'm like an overworker.
I work too much. I put too many hours into what I'm doing, and it stresses me out. So I've learned how to put things away, have really healthy and safe boundaries around my time, and choosing to do the things I want to do instead of the things I have to do unless I really have to do them. You know what I mean?
I don't do things out of guilt or obligation anymore. I'll do things because, like, joining you guys today is what I really wanted to do. So I said yes. Right.
And I think as parents, particularly as women, we don't do that enough. We put other people's needs first and we're just fading away in the darkness, you know?
[00:24:09] Speaker C: Yeah.
[00:24:09] Speaker A: Yeah. And I think especially if you're caring for a child with PFD years or a child who's medically complex, it's so important to make sure that they get the care that they need, that it's very easy to put your own needs aside.
[00:24:27] Speaker B: Yeah. And learning how to ask for what you need. Right. That's a big. That's been a big thing that, you know, I work with lots of clients with and for myself. Right.
Because we know how to do all the things and take care of all the things that lots of times it's easier for us to just do it, but. But there, you know, if we have a village around us, they can't read our minds. Right. We're gonna have to ask for what we need. And if we don't, we need know what we need. Perhaps we can, you know, just say that, I'm not sure what I need, but I know, I don't need this.
[00:25:08] Speaker C: Right. Well, and it's all part of focusing on adaptive practices for better mental health and overall health.
[00:25:16] Speaker A: Anka, I know we only have a little bit of time left, but one of the things that we had talked about before that I'm hoping we can get to is one of the main things of this consortium is trying to build that family and patient centered research agenda that really is the call to the field for pfd, for ARFID to say, you know, this is where we want to see the research going for what is important to us.
What things do you think we need to consider?
Because there has been a lot of conversation about what is the trauma that is caused for feeding intervention or for undiagnosed and intervention that doesn't happen because the diagnoses aren't really well known. How do we even begin to think about how do we look at trauma centered care in feeding intervention or feeding diagnostics?
[00:26:16] Speaker B: Yeah, I think it's. And this came up with the consortium last week when we were together. I heard lots of people talking about cognitive behavioral therapy techniques in the treatment and in feeding clinics and things like that.
And what we know about the way that the brain processes things is when we try to heal the brain from the bottom up, that's a trauma informed approach. Right. So meaning like mid brain up, if we're utilizing cbt, and I'm not saying CBT is not effective, but what I know is that processes and modalities that help to treat the midbrain and that emotional amygdala and hippocampus, as opposed to the cognitive brain, which is your prefrontal cortex, it lasts longer and there's better efficacy and we have quicker resolve of symptomatology.
I think what I'm hearing in conversations, particularly with consortium members, is they don't know what they don't know. Right. So how can the consortium members really allow for conversations to happen with providers that understand trauma and almost collaborate in a way to come up with innovative ways to treat children in feeding clinics or in home based occupational or speech therapy in just the techniques that are used? I just think about, I had a client who came in this morning that has a little bit of anxiety, that doesn't have a diagnosed ARFID or PFD diagnosis, but she came in with a pack of those buzzy, vibrating feeding tools and she was just biting on it in her mouth. So I was just curious, like, what was it? What was that trying to do for her?
And I did have the tappers While I was working with her and I had her put the thing down that she was putting in her mouth. But I'm just curious, you know what. Because parents understand what it's like to be on the receiving end of services.
Could there be a way to collaborate with the mental health field because of the complexity, complexity of diagnoses and comorbidity, like other things that are going on, like co occurring disorders or. Co occurring.
I don't like the word disorder, by the way.
Co occurring injury or you know, because it's something that's happened to them when you think about trauma.
So something's been inflicted on them.
Yeah. So, you know, it would be interesting to see if that collaboration could start and grow and, you know, considerations can be more holistic. Moving away from a medical model. I think lots of the services that our children get are very medical model based as opposed to the nursing holistic model or the therapeutic holistic model. There's so many things that go into how children with PFD or ARFID manage external stimuli, how they process things, what things are safe, what is not safe, people, things, smells, all the things. There's so many things to consider and I don't think, I think research has not gone there with targeting the brain and what is happening during, you know, stressful feeding sessions and then what's happening when it's a successful one.
[00:30:23] Speaker C: I think it's interesting, Anka, that you mentioned the nursing and the holistic model.
There are very few nurses working and feeding.
[00:30:38] Speaker B: Yeah.
And I think that's, that's a huge gap.
It's a huge gap. And I think, I think back to. I used to take care of this girl. I did home care when I was in college.
I had to work to pay for my tuition. So I took a home care job. I was an lpn. And there was this little girl I used to work with and there was an lpn. She was kind of my mentor, but she would be, she would get so creative around mealtime and she was always so successful with engaging with the client and making the environment, you know, more relaxed when, you know, parents were having a hard time.
And this was a seasoned nurse and mom herself.
So I think, I don't know, I think collaborating, you know, psychiatric mental health nurse practitioners are prepared well.
Well.
[00:31:49] Speaker C: And then there's pediatric nurse practitioners.
[00:31:53] Speaker B: Yeah.
[00:31:53] Speaker C: Working in the gastroenterology space and.
[00:31:57] Speaker B: Yeah.
[00:31:58] Speaker C: And things like that.
[00:31:59] Speaker B: Yeah.
[00:31:59] Speaker C: I think, I think psychiatric mental health nurse practitioners are probably the least represented. I mean, of course we have lots of new nurses and Things like that. And there's clinic nurses, primary care, but.
[00:32:20] Speaker A: Well, it's that kind of integration of mental health and medical together. And that's what I know we try to do within the four domains of pfd, but seeing that modeled in how healthcare service and interaction is happening is. Is challenging. But it sounds like your background is having that holistic understanding, so it's a place to start of being able to have that integration.
Yeah, Yeah.
[00:32:54] Speaker C: I don't think that's very well known external to nursing, but that. That's how we're brought up.
[00:33:00] Speaker B: Yeah, for sure. It's. Yeah. It's almost in our DNA.
[00:33:05] Speaker A: It seems like it.
Well, this gets me thinking in terms of. Because I think you'll have a good answer to our primary question, but this is a question that we ask everybody.
What are the biggest challenges that you see in making PFD research more inclusive of family and patient perspectives, and how do you think we can overcome them?
[00:33:30] Speaker B: I.
I think meeting families where they are and having them be part of which what you guys are doing. Right, with the consortium, having. Having the research be in collaboration with families because they know what they need or they know what they don't need and they know what doesn't work. And there's lots of innovation with family members that I think is worth exploring.
You just give them a voice and give them the opportunity to have a choice.
And I think that you guys can make some really good headway with moving the needle to meet the needs of the families that then always meet the needs of the children. I always talk about, you know, if one member of the family. We're all parts. We're all part of a tree. Right. The parents are the trunk and the children are the branches. Sometimes it's flipped upside down.
[00:34:37] Speaker A: Yeah.
[00:34:38] Speaker B: And the children are the trunk and the parents are up in the branch. But the analogy is we're all interconnected, and when one of us is not okay. Or there's something going on with one of us, you know, the tree is vulnerable.
[00:34:53] Speaker A: Yeah. Yeah.
[00:34:55] Speaker B: So the family's vulnerable. So how can we make sure that we're building and fortifying the soil underneath to allow for the families to grow to whatever potential they can get to.
[00:35:09] Speaker A: Yeah.
[00:35:10] Speaker B: Taking the. The normal out of the conversation, but let the families decide, you know, what their goals are and. And what they want to. They want things to look like.
[00:35:21] Speaker A: I love that. I mean, that is our hope with the consortium. We do feel like it's the beginning of a new type of research in this emerging field. Both PFD and ARFID have not been around for as long, and there is a lot of research happening, but we wanted to keep in mind and be in collaboration with families and patients at the center of it.
So we do hope that it's kind of this new phase of research because there's still so many unknowns. I think you were spot on when you said we'd still need to learn a lot about how the brain interprets all of these different feeding interactions.
[00:36:01] Speaker B: Yeah, yeah. I just met somebody on campus recently who's doing.
He's doing some sort of EEG monitoring.
Yeah, yeah, yeah. So we talked about collaborating on looking at EMDR as a protocol compared to a control or compared to another treatment on particular, you know, categories of clients, but, you know, and seeing what the brain changes are when there's a intervention that happens.
[00:36:38] Speaker A: Yeah.
That's wonderful.
Well, Anka, we just so appreciate you on the consortium and then even being able to join us for this conversation to just give a small tidbit into the world of your world and how we can be more trauma informed and trauma centered. And it's just always such a pleasure to talk with you. Your energy and everything is always just so comforting. So I know I always enjoy it.
[00:37:08] Speaker B: You're so sweet. I love being in these spaces with you guys. So I appreciate your time.
[00:37:14] Speaker A: Wonderful.
[00:37:15] Speaker C: Thank you.
[00:37:16] Speaker A: Well, anything else from anybody?
No. Okay, well, we'll see you next time then. Thank you for joining.
