[00:00:00] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does Matter.
[00:00:14] Speaker B: Hey, everyone. Welcome to Feeding Does Matter. I'm Jaclyn Peterson, CEO of Feeding Matters with my host, Dr. Haley Estrom. And we have just a great guest today. Shanda Cool is our family centered PFD research consortium member. Has been a member since we started the consortium. So we're just really excited to hear your story, to spend this time with you. We were kind of joking before recording started that it's so tough when we have a consortium of 20 members. Haley and I haven't really gotten to know everybody individually that well yet, so this is a benefit just for the two of us, but decides what you're going to be able to share with our broader audience. So thanks for being here today.
[00:00:58] Speaker A: Wow. Thank you both for having me. Thank you, Haley. Thank you, Jacqueline. I'm so happy to be here. I'm here to share our family story, which, you know, that's, that's exactly why I'm part of this consortium that you just spoke of. And it's not just our family story, but of course it's my daughter Mira. It's her story and she gave me permission to share with, with you guys today. And she also feels very strongly that she wants both people who have pediatric feeding disorder, PFD and, or ARFID and any of the other related, related feeding disorders. She feels it's very important to be heard, to be seen for who she is and for an actual medical disorder, be it psychosocial and, or physical. She feels very important about that. And so that's something in her honor that I definitely want to share with you guys as well. And she also thinks it's important that we as families who have loved ones with PFD that we're also seen and heard. So I'm so thankful that you guys are having me today.
[00:02:11] Speaker B: I love that.
[00:02:12] Speaker A: Shanda.
[00:02:15] Speaker B: Yeah, I'm. I'm speechless. Thank you so much. I. I think that that is so important in, in being seen and being heard. And I just love that you asked if you. If she was comfortable sharing you sharing her story because it is her story as. And you've got a component of it and she's got a component of. And that's where we talk about the complexity of feeding is involving both people. So, yeah, yeah. Would love to hear her story. And I know it's a long one because. Because she's how old now?
[00:02:43] Speaker A: Mira is 10. She is 10 and a half. And you know, this is, this has been quite A journey. And I know that people listening will. Will be able to resonate with her journey in many ways. And Mira's is definitely okay with me sharing. She has multiple disabilities, so Mira has what's called a mutated TRAP gene, and it's a de novo mutation, which means it's completely random. So it's not genetic in the sense it came from my husband and I. It's genetic in the sense of it just happened. And so, you know, from that TRAP gene, she has a Dandy Walker cyst in her brain. And that is when she was born. We did not know that. The only thing we knew, which is the cause of the TRAP gene and the Dandy Walker is she has chronic kidney disease. She has one kidney, and thankfully it functions beautifully. And so that was the biggest thing that they were worried about when Mira was born. And that ended up being that it works so well. Not a big deal.
So thankfully.
But there are many other facets to Mira and her medical. And I think what I would like all of the listeners to think about and realize of all of the multiple disabilities when Mira was not meeting her milestones.
So she didn't walk on time, and she didn't speak on time. She signed for the first, just about four years of her life exclusively. So we didn't think she would speak. And she speaks a lot now, which is we're thankful for. But of all those challenges, the speaking, the walking, the sitting up, some of those social challenges, the feeding disorder aspect is the hardest thing for us to deal with as a family. And it's the hardest thing for Mira, I would say, personally and socially to deal with. And so I think that that's something to think about. But what I do want to share is her. Her birth story, because it's interesting in the sense of Mira burst onto the scene the day after my due date. So she was full term blue and unresponsive. And it was an emergency C section, which if you're thinking about families and you're thinking about birth stories. I was in a program super, super crunchy and fun and romanticized version of what's going to happen when your child's born. I don't know if you guys have ever heard of those groups. And it was. I'm grateful that I was part of it. You would go every week and sit in a circle with like 12 other moms and make your birth plan and talk about how great everything was going to be.
And I think that was a really great lesson for my life of you can't Plan most of what happens to.
[00:05:38] Speaker B: Yeah, it's hard to plan when it's a different story on the other side.
[00:05:43] Speaker A: Yeah. And so I was also super excited in this group to breastfeed.
And that is something that I would be interested to know. How many individuals and children with pediatric feeding disorder were unable to breastfeed? I'm gonna guess it's a lot.
[00:06:01] Speaker B: Maybe a good research question for us.
[00:06:04] Speaker A: Right. And you just really can't describe when you've had this crunchy birth plan. I think for. For, like, all of a sudden, you're getting an epidural, and you're. You're slapped up on the table, and it's just. It was kind of my worst nightmare. And I think the hardest part, when you think about the family experience and this first experience, what I would consider with PFD because of that swallowing of meconium, was when this happened, when they realized that her heart rate had dropped.
They. They scrubbed my husband up, and he went into a separate room while I'm getting my epidural. So I'm all alone, and I'm getting this epidural. And he came back in for the birth. And the scary part is he's in the OR room, and they have written up on there, you know, the time baby girl, which we knew we were having deceased. So my husband. I come in, he's bawling, and I'm thinking how he's so emotional. Like, I'm ready to have my surgery. She's still alive at this point. She hasn't been born. And I'm going, he's not an emotional guy. I'm like, why is he crying right now? Like, wow, this is so intense. He's so excited to have this baby, right?
[00:07:18] Speaker B: Yeah.
[00:07:18] Speaker C: She.
[00:07:18] Speaker A: He literally thought that they had rushed me in there and that she had passed, which I know is such an unfortunate situation for so many. And whoever it was before us, my heart goes out to them. Right. And I didn't know this till after. He. Obviously, I thought he was crying from joy. And he. Then he sees me, and they're rushing me in. Then he's super confused because he's going, I just saw this on the board. Now she's here. Did this happen? And he indicated to the nurse, and she said, oh, oh, no. I'm so sorry. I'm so sorry. That was before you.
Here's your wife. Then enter Mira, blue and unresponsive. So literally, what just happened in that OR room?
Literally. Literally, that's what happened. You know, that's what's happening to us. Right?
So it was just a roller coaster from the beginning. We were very lucky. It happens that. And enter the story. A friend of my family, because we're in a small town, Minot, North Dakota, and they only had the one operating room for us to be in. And so he was my. My pediatrician. He's been doing it for 40 years. So thank goodness that he was there when she was born because he was able to grab her and suction it all out where a newer, less experienced doctor wouldn't have done that way. And so there was a very big possibility, the nurses told me, that she would have passed or she would have been in chemical pneumonia in the NICU for probably six months. And Mira only spent one week in the nicu, and he did save her life in that manner. And thank goodness he was my pediatrician when I was born, which is amazing.
And he was her pediatrician. He just happened to come. He heard that I was in distress because he was my parent, parents, neighbor, and he came in and happened to be in that room, and he happened to suck out all the meconium, and she survived. And. And that's. I'm grateful to him for forever. Forever and ever. Even though he, 40 years in, had never seen a patient with pediatric feeding disorder. So on our journey of him being her pediatrician and me loving him like family, you know, it was one of those. Those feelings of, oh, you can't breastfeed because you're too nervous. She's not gaining weight because, you know, you're just. You're just too worried about it. Feed her ice cream all day. You know, feed her yogurt all day. It'll be okay.
And so I think it was hard for me because this is the person that absolutely saved her life and had doctored our family for my whole entire existence. And so I believed everything he said, and I guess I learned from that. And I want anybody listening to just think about. Doctors are humans. Doctors are just people, just like us, and they only know their lived experience. But that's a research indicator, too, that we could look at. How can we get this education out to providers, especially providers that have been in that space in pediatrics forever and ever, and they do know everything because they do have that wonderful lived experience.
But we're seeing this prevalence of pediatric feeding disorder, and it's not going away, and we need to get education out to those providers. So I could have been taken more seriously because Mira wasn't diagnosed until two and a half, and she was failure to Thrive.
I went into the NICU to breastfeed her for the first time, and she latched on like a champ and ate like crazy. And I was like, this is easy. What are people talking about? And she never did it again.
And it was my fault because I was too nervous, right? Just kidding. That's. That wasn't it.
But we didn't know why. We didn't know why it wasn't working. So I did blame myself. And there's a lot of stigma with that, and there's a lot of shame that comes along with that, especially when your birth plan said that everyone does it and you should do it. So I just really want everyone listening to think about how that would make you feel as a mom, you know, and that was many times over. Different providers, who I respected and who are amazing providers in their own right, would say, ah, you know, you're too nervous or you're imagining it, or, she's gaining weight. She's not gaining weight. Maybe at the rate she should be, but she's gaining weight, it's okay. But what they didn't understand is at home there were. She. She wasn't able to really do enough with the breast milk, and I couldn't get enough with the breast milk without her actually feeding. I had a pump. We did it for about a month, but she wasn't gaining enough weight. So we supplemented, and every single formula made her sick.
So there was one formula that we could use. And again, when you're in a really small town in North Dakota, it is not easy to get anything exclusively. Right. You need to be flexible. Mir was not flexible because of pfd. So we were, you know, having people drive out to towns, hours away to get this formula when they would run out on the shelves in our small town. And then there was only one bottle that she could use. I. I'm a chef by trade, and that always blows people's minds that I'm an executive chef by trade. And one of the most important things in our family life and in my job, it's as a breadwinner, is cooking and eating and food. And my daughter doesn't eat by mouth. So it's. It's just. It's the irony of the world, right?
But at the same time, I think it just gives me this new appreciation for the different things that people go through in their lives, and it gives me more compassion for sure.
So anyway, I guess, you know, there's one bottle that she could eat from. You could buy it. It was the cheapest crappiest bottle. And so that was hard, too. So what catalyzed us for getting her diagnosed was the fact that she was two and a half still taking formula by the one type of formula by the one type of bottle. We had tried periods, we had tried feeding on the spectrum of what you would normally introduce, you know, and when she wasn't meeting other milestones at age one, that's our first trip to Mayo. And that's when she was diagnosed with her genetic differences. They still had not diagnosed, though, with the pediatric feeding disorder, because she was taking a bottle, and she would, you know, the one kind of bottle and the one kind of formula. We. We got to two and a half, and she absolutely refused to do any puree, really anything with texture other than the formula. And at that point, I went back to the doctor for, like, the 10th time, and I'm like, hey, I. You know, I don't. I don't know what else to do. I think that we need to go to some sort of an intensive feeding program.
Now.
There is a place.
[00:14:36] Speaker C: Shanda.
[00:14:37] Speaker A: Yeah.
[00:14:38] Speaker B: Yeah.
[00:14:38] Speaker C: Can I ask. I mean, how did you know that there were intensive feeding programs?
[00:14:43] Speaker A: Well, at the same time, Mira was not the best sleeper, and she could stop breathing frequently.
So medically complex slept on me this whole time. And so when she would stop breathing, I could feel it, and I would shake her. So I'm also awake most of the night, and that is a great time to do research.
[00:15:09] Speaker C: Yep.
[00:15:09] Speaker A: And find what do I do and that enter that situation. I had not found you guys yet at Feeding Matters, but I did find some resources where they had these intensive feeding programs. And when I went back and at this point, she's not gaining weight like she should be. Now we're going down. Now we're in the failure to thrive category, which is also the scariest thing you can tell a parent. Right. And so I. I asked, though it was not provided to me by a medical professional, it was me asking, right, okay, can we go?
And so we did.
At 15 months, because of the complexity of all the things, but primarily feeding, I gave up my restaurant, and I stayed home with Mira for the first five years of her life. And my husband went into the oil field. And so he's a teacher by trade. He was a professor. And we really couldn't live on that. So he had to go out and drive trains and almost get blown up every day. So that's what we did for several years.
[00:16:17] Speaker C: So I was. I mean, I was hearing parts of it, but I was imagining and, you know, from my own experience, I knew there was a lot of background work in there that was happening, so.
Yeah.
[00:16:30] Speaker A: Oh, absolutely, there was. And I would do it again. You know, someday when Mira's listening to this, I want her to know there's.
[00:16:38] Speaker C: Not a lot of choices, though.
[00:16:39] Speaker A: Yeah, those sacrifices I would do again for her a hundred percent of the time. But that doesn't mean it was easy. Right. My restaurant was my dream, and I love that place.
But I love her more.
[00:16:53] Speaker C: Yeah.
[00:16:57] Speaker A: So you know what's really exciting, though, about this whole process is that through the process of me going to the intensive feeding disorders clinic with my daughter, they. That's when she got a diagnosis. And so at two and a half, she was diagnosed with pfd.
[00:17:16] Speaker B: And did they use PFD and ARFID as those terms?
[00:17:20] Speaker A: They did. And that was like brand new, you guys. This would have been.
[00:17:24] Speaker B: Yeah. I mean, because that's. Yeah.
[00:17:26] Speaker A: 17.
[00:17:27] Speaker B: Very new.
[00:17:28] Speaker A: It was so new. And they were cutting edge. Although I will say in that essence, and I know, I think it was one of your other guests had talked about the intensive feeding program. And I echo her feelings on that. Is there's a place for it. I was there for 10 weeks. I was one. We were one of the longest groups to be there, Mira and I living away from home. We were in Fargo. We didn't live in Fargo yet at that time. So it was a five hour away drive. And so daddy kept working and I. I brought her. We had a little apartment we stayed in. And it was one of the hardest things she's ever had to do. And it's definitely one of the hardest things I've ever had to do. And we saw like, little to no progress for 10 weeks. And they ran every test that was known to man at the hospital, and they couldn't figure out why she was really just not able to eat. And at the time, this is one of. I don't have a lot of regrets because I do see challenges as just that and that we learn from them. But if I could go back and I knew what I know now and I knew better, I would have never done the intensive feeding program because we didn't understand there was a hidden diagnosis there causing her PFD at the time. So we. We did every test known to man. And of course, you know what I hate are those barium swallow studies.
Shout out to everybody who's had.
[00:18:57] Speaker B: That's a very common sentiment. I don't think you're alone in feeling.
[00:19:01] Speaker A: That way, you know, because for some odd Reason when they have this glowing yogurt in front of her, she can swallow it twice, right? And it's like, nope, nothing's wrong. And I'm like, yeah, but we have to sit for, like, two hours to get, like, three ounces of food in that tiny tummy.
[00:19:21] Speaker B: There's so much hidden, hidden fatigue stuff. And fatigue.
[00:19:26] Speaker A: There's a fatigue factor, right? And so I think that was a real low point for me, was when we went through 10 weeks. She came out off the bottle, which they discontinued that bottle. That was another reason I had to go, you guys. The one bottle she'll take, they weren't making anymore. I think it was full of, like, bpa. Like, I was literally, like, poisoning my child with this bottle. But it was the only. It was a slow flow, and it was like the tiny nipple. It was the only one she could eat with. And so she was able to take the little cup that has the little side cut out and take sips after that. That was, you know, we could do formula, still a few puree.
I went home with the protocol, and I religiously did what I could, and I would get as much formula and puree and creative pureeds into that kid. And that was my entire job.
Now, people that haven't dealt with pediatric feeding disorder may not believe that fact. Let me tell you my job. From the time I woke up in the morning till the time I went to bed at night. Excuse me.
It was feeding Mira. It was keeping her alive. And I was in a. Just a terrible depression at that time. I'm a very positive person by nature, but that was one of the hardest things to go through as a parent. And so when we did that and we went through that, by the time she was five, she was emaciated. I could not keep giving her enough pureeds or sips of formula to keep this kid alive.
[00:21:11] Speaker B: Yeah, 24 7.
[00:21:13] Speaker A: And so all of a sudden, I.
Again, I went back to Mayo. We'd been to Mayo several times for lots of different things. And I said, what do we do? And they said, well, come here or go to Denver and do another intensive program.
And I was like, no, I've done that. We need something else. I need someone to take another look at her. So I researched and I called back and I said, I see you have an aerodigestive. Yeah, we don't think she needs that.
And I was like, well, we're going to show up for kidney appointments, and I just like to visit with the head of the program and just have him look at her. Because I cannot keep feeding my child.
So the biggest blessing in that. Now you gotta, you guys have to understand, she's five at this point, but she's the size of like a two and a half year old. She's tiny. And we get there and they met with us and they admitted her into the program, the week long program to do all the testing immediately. Like they were like, oh yeah, so thank goodness. But like I had to literally beg for them to take us. And that is something I never want another family to go through, that you know something's wrong and that you have to beg for a medical institution to take your kid and give them testing. Right? Nobody wants their kid to have gross testing down their esophagus and up their nose and you know, MRIs. And nobody wants that. Nobody wants that.
But I had to beg. And so, you know, that's, that's one of the hardest things to see her go through.
But it gave us answers. This time they did the proper scope.
And I think it was a new test as well. So in everyone's defense, it was a new, a new special scope that they had created with this new aerodigestive team. That was the very cusp of the beginning of aerodigestive. And one of my, I shouldn't say this, but happiest moments as a mom, because I did feel seen and heard and justified was when we got that testing back after the week.
And her pulmonologist, who I love, said, okay, mom, how on earth have you kept this child alive?
Because her trachea was a six month old trachea on a five year old.
So we were literally trying to feed her like she was a newborn to six month old. But we're trying to get her to, you know, not eat by bottle, which doesn't work out so well. And then the secondary to that was she had tonsils and adenoids that were three times too big and then a little tiny throat that was like negative one.
And so again he said, I cannot believe that she didn't pass away with crib death. I cannot believe you somehow kept her breathing through the night for five years.
And I said, that's easy. You sleep with your kid for five years and it's not easy.
Imagine. Yeah, but I was so justified, you guys. I want everyone to share in the joy of that moment. Because there was a reason, because prior to that, people sitting across the desk that wouldn't give us funding, that wouldn't give us disability waivers that wouldn't meet us, and our Entire income is going to medical. Yeah, because they were like, nothing's wrong.
People that are gaslighting you, people that are saying you're crazy. Oh, I'll bring her home, I'll get her to eat, take her, do it. You know, it was so hard because it was something that I think in a smaller area of the country too, people just had not seen.
People didn't know about it. So again, that's something that we can do with research.
We can show people it's real.
I want your thoughts, Haley.
[00:25:15] Speaker C: Well, I want to know what happened next.
[00:25:18] Speaker A: Okay, so I was, I was at least justified in that. And they immediately put a food tube in.
[00:25:25] Speaker B: Yes, they. And, and, and has anyone had a conversation with you before at that point about feeding tubes?
[00:25:32] Speaker A: Yes. And they were extremely negative. Like, they were like. Because we, we would talk. Because I'm like, gosh, maybe we should, you know, like I'm, I'm spending 20 of the 24 hours feeding her. And they're like, nope, if you put that feeding tube in, she will never eat normally. And she'll learn. Just give her time. Right? Just give her time. Just let her eat. Pedia. Sure. I mean, the kid at that point was living on the really sugary yogurt. That's not even real yogurt. It's basically sugar in a pouch. And her two safe foods and chocolate, pediatric. That was the two things out of all of the things. And trust me, I'm a chef. There were a lot of things that we tried.
[00:26:13] Speaker B: I'm sure you did. I'm sure you got very creative.
[00:26:15] Speaker A: Didn't work. It didn't work. So that's the ARFID component where, you know, she, she was so selective and she had so much sensory. And now we know that every time she was trying to, you know, eat and swallow that her trachea was sticking to itself.
[00:26:32] Speaker B: So, yeah, I mean, she built up.
[00:26:35] Speaker A: Yeah.
[00:26:36] Speaker B: So many negative experiences.
[00:26:38] Speaker A: That poor kid. That poor kid. Right. And, and nobody knew. And I know that she, she has forgiven us for sure. She knows that we did everything we could. She knows that we tried our hardest. But I think as a parent, that still doesn't make it real easy when you're just like, gosh, but at least by five, we figured it out. She got the food tube and that's the biggest blessing of our life. She is 99, fed, still with that food tube. At 10, she, it doesn't get in her way.
[00:27:11] Speaker B: You know, it's a life saving tool.
I'm so glad it was well embraced.
[00:27:16] Speaker A: And yeah, I would encourage.
[00:27:18] Speaker B: Paired with you. Yeah.
[00:27:20] Speaker A: Anyone to get it for their kid. Like if your kid is struggling and they are. Failure to thrive.
[00:27:25] Speaker C: Yeah.
[00:27:26] Speaker A: Don't think twice about the food tube now. I'm not going to sugarcoat. It's still hard. There's going to be, you know, the surgery, which is super hard recovery. She ended up getting like a crazy sort of cyst kind of under the food tube during a weird complication because she had a hernia that they fixed at the same time. And it was kind of messy. And so she ended up. That was really hard. So it was a hard recovery. And then we couldn't get the right formula and the right amounts. And it's surprising, the throwing up. My gosh, the throwing up when you first get tube. And that's. I mean, I know that's a thing. I know that that's what people go through, but still when it's in action. I remember my husband and I were so scared of it. I had never seen anyone get tube fed prior to my kid having a tube, you know, because I know, Haley, you're in nursing. I mean, you know, you guys are exposed to that with your occupation and of course, you know, otherwise, but like, I had never seen that.
So my husband, very well known. No. And we're trying to get the extension on and we're both crying, you know, because she's got an abscess and she's in pain and it's, you know, it was. I wouldn't go through that time, that very beginning time again for the world, but it saved her life that I have before and after pictures of just two months after the food tube. She looks like a whole new kid.
I could go back again. Regrets aren't worth anything. But if I could have gotten that when she was 2 instead of that first intensive run. So any parent listening, if you're on the fence about a food tube or they told you it's just a terrible thing or that you shouldn't do it, don't listen to that.
[00:29:07] Speaker C: Right. I mean, if I can share just, just quickly. I mean, I. So I was an adult intensive care nurse. Right. So I mean, so feeding tubes for me were for people who were critically ill adults. Right. In it.
[00:29:23] Speaker A: Yeah. Yes.
[00:29:25] Speaker C: And it had been presented to me as an option for. For my son, as you know, and. And it had been presented as something kind of negative to.
And. And I just couldn't see it in that context for a while.
[00:29:43] Speaker A: Right.
[00:29:44] Speaker C: And eventually I was like, please put a tube in my son. Like he really needs this. He's not doing well. He's teeny, teeny tiny, and he can't develop.
[00:29:51] Speaker A: He.
[00:29:52] Speaker C: He's lethargic. He needs this really, really bad.
And I, too, wish that we had done it much sooner and that I had been able to see it as an opportunity for his little brain and his body to develop sooner.
And it's been a lifesaver so many times.
It gave. He's always been a vomiter. It gave him much more to vomit, so he's always been a happy puker. We were lucky not to have any surgical complications.
[00:30:20] Speaker A: That's good.
[00:30:21] Speaker C: Yeah.
[00:30:23] Speaker A: But.
[00:30:23] Speaker C: Yeah, I'm right there with you is. I. I think it could be offered as a bridge to better eating for some. I think it's.
I think the tubes get a lot more negative press than.
[00:30:38] Speaker A: Yeah.
[00:30:39] Speaker C: Than they. Than they should have. I. I think they can be a very good thing. Like we should.
I think we could be better friends with tubes.
[00:30:48] Speaker A: Yeah, absolutely. I'm best used with my. Her. She named it. Her. Her tube has a name.
[00:30:53] Speaker B: What's her name?
[00:30:55] Speaker A: Tanya.
[00:30:56] Speaker B: Tanya the tube. Love it.
[00:30:59] Speaker A: She. She named it right away.
Mira loves. She loves her tube 90% of the time, 10% of the time, because she's 10, and it's becoming a thing where you have to be in with the in crowd.
She's a little bit embarrassed. You know, she. She's the only one at her elementary school that gets fed by tube and who has a nurse who comes in, and we love her nurse. And. And Mira's always been very open about it, but she also sometimes gets a little bit embarra. And Mira has a personal goal of eating pizza, because everywhere you go, when you have a kid party or a play date, there's pizza, always pizza. And she just always feels like she's missing out. And I think that's something that we're looking at now with her PFD because she's grown, you guys. She's 10. And. And you know what's crazy about this, Haley, And I'm sure on the nursing side, you guys can. Can think about this, but once she got that tube and she got that proper nutrition, then she had more strength and she could grow. And all of a sudden now, you know, we're a couple years later after the tube, maybe closer to eight, but she's getting real more normal swallows. And she literally had to go through that growth period via tube to get that proper nutrition to do so. And so now I am so happy to announce to you guys and this Will be perfect. As we're nearing the end of this podcast is Mira ate five, not one. And this is a first time thing on Sunday. Club crackers.
[00:32:44] Speaker B: Wow.
[00:32:45] Speaker A: Chewed it like bit it, chewed it, sucked on it and swallowed five club crackers. Nice at ten and a half.
[00:32:54] Speaker B: Amazing.
[00:32:55] Speaker A: And I told her, I said, baby girl, that's your pizza.
[00:32:58] Speaker B: Yeah.
[00:32:59] Speaker A: You know, I don't like to put too much pressure though. Like I don't want to be like, hey, here's your goal or whatever we do. It's fun of feeding therapy. We, we've never stopped. But I don't want her to feel that pressure because I don't know where her trachea is at. Right. Like, I don't know. It's one now. Maybe it's still six months. I mean, I don't know. And I honestly don't want to put that pressure on her because I want her to be able to direct and dictate what she feels comfortable doing, which is very little. And that's where that PFD, as we're gaining those physical skills is becoming arfid, where she's, she's still terrified of choking.
[00:33:36] Speaker B: Yeah. And especially getting older. Like that's where that cognition takes over and the social situation takes over. And that's where we see that psychosocial piece really drive it. And then said the diagnoses work well together in the sense that she still does have some of that feeding skill and the medical pieces.
But I'm sure you see it too good.
[00:33:58] Speaker A: I mean, you know, because she's too afraid it would take her too long and she's too afraid to do a lot of trying, you know, of things. But although I think that she could crush a lot of her goals. But now it's a psychosocial situation and I have not been able to get around that yet at this point.
But we're working on it and everyone's.
[00:34:20] Speaker B: At their own pace too. I think that's what I. It's been really interesting with Feeding Matters. I've been used to putting my head in like the parents head, but then learning more about ARFID and just really trying to expand where we put provide our support at Feeding Matters. I'm just learning so much more about the child and the patient's experience that I haven't as much before. And it is so different and it is at their timetable. She's 10, she gets to decide.
[00:34:54] Speaker A: And, and honestly too, I don't ever want that tube to go away. I mean, you know, I know that that seems to be a goal. Right. Like, everybody's like.
But I mean, they act like when you're, when you're in the therapy, in the medical arena, I do feel a lot of people, and I've even have. And we've met some other tube fed friends and you know, they're like, oh, you know, we're getting the tube out and now they can, you know, drink smoothies. And I'm like, no, never, don't take it out. Because, like, she gets sick. You know, they can still drink a.
[00:35:27] Speaker C: Smoothie with a tube.
[00:35:29] Speaker A: You can still have tummy as an option. I know it's not a goal. I feel like it's not an end goal to ever get rid of that thing. Geez, no.
[00:35:38] Speaker C: Well, I mean, depends on where they are medically and what your goals are, of course.
[00:35:45] Speaker A: And everybody's different, so I'm not, I'm not judging anybody for wanting to get it out, but I think sometimes if there's pressure on you, I. I guess I should make that clarification.
[00:35:56] Speaker B: Yeah.
[00:35:56] Speaker A: If there's pressure on you to have your kid get that tube out, or as an adult to get that tube out, man, do what's best for you. And, and Mira herself, when her, she felt actually, this is really sad because she had a really good friend who has a tube. They're similar in age and they, we live states apart now because they moved, but we would do some FaceTimes together. And she said, you know, yeah, I'm doing all these shakes. And you know, mom said, oh yeah, she's getting the tube out next week. And, and I'll be honest, you guys, Mira was crushed. Like, she cried. She said, I'm so jealous, mom, you know, of her getting her tube out. But she's like, I'm too afraid to ever get mine out. And I said, mira, I don't ever think you should get it out. You know, I think you need to do whatever you're comfortable with. And at this point, she, she likes to say 99.5% fed by the tube because she, she leaves yourself that.
[00:36:56] Speaker B: Yes, she's got to honor what she's been able to accomplish.
[00:37:00] Speaker A: Yeah. And. But I mean, I just don't ever. I think as a parent too, my own PTSD comes into play and I would never want to take that thing out.
[00:37:08] Speaker B: Yeah.
[00:37:08] Speaker A: I don't want to have to rely.
[00:37:10] Speaker B: And I think that's okay. As like, your goal is what matters, your version of success is what matters. And that actually is such a good pivot to the consortium itself. Because that's so much of why we originally formed. The membership was really wanting to influence the research from that family and patient centered lens. And so I, you know, what's been your experience so far? What have you learned that, that, that you think is, is been valuable for you in that or what do you hope to see out of what we do?
[00:37:46] Speaker A: I was thrilled when I got the email from Feeding Matters talking about this consortium and I was just hoping that you guys would pick me. I was just so excited because I, I believe in education, I believe in research. My husband is in education. And, and so to me it was like, wow, somebody wants to target this and study it and make it better. And that's not just for me. That's not just for my kid, that's for forever. Right. That's for the future. And that was what resonated. So like I couldn't wait to be a part of it. And you know, I would just love to see what we can do going forward. And I love that you guys were able to get the funding to involve the families. So we're not just doing research from a top down where we're going, oh, you know, let's look at this from the researcher lens, which is important, but when you involve families, you're getting some of that feedback that you wouldn't otherwise get, right?
[00:38:46] Speaker B: Yeah, for sure.
And I think that's why it was so important for us that you all take this and run with it. Like we are here to support you in that. But you get to tell the field what's important to you as a family member, as an individual that has these struggles on your own, because you do. You see research happening and we've seen research grow exponentially in the field for pfd, for arfid, But a lot of that research doesn't involve the families at the beginning of it. It may have family touch points here and there, but I think that's.
[00:39:25] Speaker C: But it's mostly clinician questions.
[00:39:28] Speaker B: Yeah.
[00:39:29] Speaker C: Researcher questions, clinician questions. But we'd like to see it coming from the experiential experts, which is people like you.
[00:39:40] Speaker B: Yeah, we joke that it's lived experience. Are your credentials LE is for sure at the back of your name. Shanda. And I really appreciate you sharing your story with us today and just thank.
[00:39:56] Speaker A: You for having me.
[00:39:57] Speaker B: Yeah.
[00:39:58] Speaker C: So I'll, I'll move to the last question then.
[00:40:00] Speaker B: Yeah. Haley.
[00:40:01] Speaker C: Yeah. So we are asking everyone the same question.
What are the biggest challenges that you see in making PFD research more inclusive of family perspectives? And how do you think we might be able to overcome them?
[00:40:20] Speaker A: I love that. That's such a great question.
There's multiple things that come to mind, but the first and foremost I think, and that may be because I live in a rural area, a rural state overall, is that the ease getting together with others who, you know, are involved in pfd? And I think Feeding Matters has done a great, a great service to everyone with their virtual formats.
I had attended the, one of the first conferences I think you guys did virtually and that would have been the only way I could. And here's the other constraint. A lot of people, it's financial.
There are those financial barriers to being involved in the research because let's be honest, a lot of us are paying for formulas, A lot of us are paying for a lot of medical equipment.
You know, those are the challenges. And then also when you have a child with PFD and or arfid, it takes a lot of time.
I can't drive through the McDonald's drive thru on the way to adaptive dance and show Happy Meal at my kid. And it sounds silly, but it takes so much planning and we are determined to live our life and travel and do things. And it just takes so much of my mom headspace to plan those things to make sure, like, you know, how do you take white duocal filler powder to Mexico?
I'm gonna guarantee you're gonna get like a full body pat down.
It's hard, you guys. I mean there's, there's challenges that people don't think of in just your daily life, in your traveling, in getting ready for school. We get up at 5 in the morning every morning to feed Mira her breakfast via tube while she's waking up to get it in at the rate that her body will take it. And then we prepare it all for the nurse for lunch. And you can't not do that.
[00:42:29] Speaker B: No.
[00:42:30] Speaker A: You can't be like, here's a waffle, you know what I mean? Like you, you have, you have to plan.
But it also makes you, you know, it makes you a very caring parent and it makes you have grace. For all parents, I think, to know what everybody's going through that you don't see. Because nobody at my work realizes I'm doing that.
Nobody sees that.
[00:42:53] Speaker B: No one sees it.
[00:42:54] Speaker A: And that's okay.
[00:42:55] Speaker B: It's all happening behind closed doors.
[00:42:57] Speaker A: Yeah, but everybody's got stuff. No matter what your, your child has. I mean, you may have it completely medically, you know, regular kiddo and, and you still have a lot going on. Right? So I'm not saying that, but I just think that there's so much more with PFD to it. So I hope that people can embrace this consortium and think about going to the conference and attending and I'm just so thankful you guys had me today.
[00:43:23] Speaker B: Thank you Shanda and thank you for telling Maris story.
Yeah, thank you.
[00:43:33] Speaker C: When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of Two Parent to Parent Mentoring program. Parents in need of support are matched with our one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with Pediatric Feeding Disorder or pfd, as well as avoidant Restrictive Food Intake Disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information, please contact us at 623242, 5234, extension 306 or
[email protected].
[00:44:46] Speaker A: You are not alone.
