[00:00:00] Speaker A: Presented by Feed Matters, with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter.
[00:00:18] Speaker B: Hey, everyone. Welcome to Feeding Does Matter. We have a story to share with you today, and as we've promised, we will be introducing all of our consortium members on this podcast. We want to share Heidi Lumen's story. She is here with us today, and actually, we got to meet her in person because she came out to the Feeding Matters conference in Phoenix and was just so great to meet her in person. Heidi's been with the project since the beginning, and so. Heidi, welcome. Do you want to share a little bit about yourself before we get started?
[00:00:54] Speaker A: Yeah. Thank you so much for having me on this podcast. I appreciate the opportunity to be able to share our story. And I guess a little tiny bit about me is I do have a background in nursing. I haven't practiced for about 12 years now since my son was born, but it's just ironic that I have an understanding of healthcare terminology, and yet we still struggled on this feeding journey. So just a very real, normal thing.
[00:01:26] Speaker B: Yeah, very, very much so. And so you came to us because your daughter Lydia has pfd. And so do you want to share a little bit about her story or, you know, your family's story? Because we know PFD impacts the whole family.
[00:01:42] Speaker A: Yeah. So I have three children. They are ages 12, 10, and 8.
Jack, Lydia, and Hank. So boy, girl, boy. And, you know, when people talk about the feeding relationship as a dyad between, like, the caregiver and the child or the parents and the kids, our journey also encompasses this dyad, but it also includes the relationship between our. The siblings on this feeding journey.
And so I can't tell Lydia's story, she's my middle girl who's 10, without sharing part of her older brother Jack's story, too. They're very intertwined.
And I just want to also say that I did get both of their permissions to share this story, and they are. They are comfortable sharing the. The information and letting people know about the world of celiac and pediatric feeding disorder and arfid.
So I will just start by saying Jack and Lydia are about as opposite as can be. They do share one diagnosis, though, and that's what they have in common. And it's celiac.
This is, I just want to say, is an autoimmune disease.
And so eating gluten triggers the body to fight against the lining of the small intestine, causing villus atrophy. And therefore, your body has a lot of inflammation and trouble absorbing some key nutrients.
So While Jack was an emergency C section, Lydia was a natural vaginal birth after cesarean, a vbac. And so that's another just total opposite.
She nursed fine from the first, for the first two months. And then she began to have some trouble.
She would arc her back, she needed to nurse in a laying down position.
I often nursed her while she was sleeping because she had trouble relaxing while she was awake.
I presumed that she had reflux because she really would only sleep on her side and with the mattress propped up so that she wasn't flat.
But again, I just sort of thought these are normal baby colicky things. At four months old, we stopped dairy in my diet because I was breastfeeding her to help with some constipation and reflux. She started to have poop every day and relax and her colic basically subsided. She was a very happy baby after that, but she never did take a bottle, which is tricky. Jack always took a bottle, so I guess it was just another way they were different.
At 10 months old, Lydia was still not eating any table food and she was uninterested in food.
So while I would try to spoon feed her, she was not interested. She would just turn her face.
So we didn't push that very hard. But essentially we did baby lead weeding, leaning, sorry, baby led weaning by giving her food on her high chair tray and we would just cut it up small and just let her kind of start to touch it, feel it, look at it. But that was our hope. What she ended up doing was just staring at it. She didn't want to touch it and by all means she didn't want it by her face or her mouth.
And so at this point, Jack was two and a half and he was receiving some speech therapy in our home because he wasn't talking yet. And I have this vivid memory of asking our speech teacher, our speech therapist, if she had any tips on how to get my 10 month old to eat.
And so she did give me a resource and I looked at it and I thought to myself, gosh, this is intuitive and it's everything I'm already doing. So we just kind of continued on our journey, doing it on our own. I managed to breastfeed her through a year and then she transitioned to cow's milk and we introduced dairy and she was doing all right.
There was only one sippy cup she would take, she never did a bottle, but we just went straight to a sippy cup.
And then we move ahead just a little bit. When, when Jack was three he's still getting speech therapy.
And Lydia was just a little bit over one. Jack swallowed a quarter and that was a very scary moment in my parenting life, but it actually lodged in his esophagus.
And we had to go to the ER because I just knew something wasn't right with his eating and breathing.
And so we went to the er, they did the X ray. I have a picture of the X ray. And it was lodged in his esophagus right near the opening for the trachea. And so they did not want to push it through because there would be a risk of obstructing his airway. So they did an endoscopy to remove it in the ER.
I joke that our 25 cent quarter turned into $6,000, but we met our deductible. And so with Jack being a picky eater and he had some skin rashes, he had a speech issue, we decided we should get some allergy testing before our deductible ran out and had to start over. And so we did a blood test with an allergist and he was mildly positive for celiac. The allergist called me and to tell me the blood test results, I asked him, you know, point blank, well, does Jack have celiac or not? And the allergist said, well, try a gluten free diet, and if it helps, then yes, I would say he has celiac. And I honestly, I had no idea what celiac was at that point. And so we just went gluten free to the best of our ability.
And I will just let you know that I have since called that allergist office and let them know that the proper thing to do would be to refer to a GI doctor and get an endoscopy with a biopsy to confirm a celiac diagnosis. So we were eating gluten free as a family mostly, and Lydia started to eat a little bit. Jack was eating, he was doing better.
Not as many symptoms, but he still had some symptoms. Mainly he would have a lot of joint pain, a lot of rashes, and he actually did have quite a bit of severe anxiety.
He had so many other symptoms, but they were kind of trending better.
So after nearly a year of eating gluten free, or so I thought was gluten free, I began to do more research and realized that if Jack truly had celiac, we were pretty much doing this all wrong.
We would give him toast from a shared toaster. We let him have pizza occasionally.
I was doing a lot of cooking with soy sauce, which I didn't know had wheat in it.
And so I finally decided we need to go CGI and figure out if Jack actually has celiac. And so the only way to do that is you have to do a gluten challenge if you've been on a gluten free diet.
And there's not a lot of research on how much gluten a child needs to ingest to be able to invoke the reaction big enough to see it on a biopsy in an endoscopy. And so I was giving him gluten, but because I knew he reacted to gluten, I was not giving him very much.
And so anyways, we did the colonoscopy and the endoscopy and the blood work all over again. He was, he was four years old at this point.
And again, his celiac blood work was positive, but his biopsies on the endoscopy for celiac were negative. And so we were told to go on a regular diet and he might develop celiac at some point.
And so on the regular diet, Lydia started to struggle to eat again. But I did not associate it with gluten. I just thought at this point, she's two years old. And I thought it was normal two year old behavior to be picky and to kind of change eating habits. So see if we fast forward seven months. Jack had just turned five.
This is the fall of 2017, and he was hospitalized. He was extremely fatigued, weak.
He had had just some crazy diarrhea, which now I know was secondary lactose intolerant, but he was very sick. He was unable to walk, dehydrated.
And I had been talking with our clinic and we had seen them twice and done blood work and stool samples. Everything was negative except his sed rate, which is a marker for inflammation, was rising. And by the time we got to the hospital, it had gone 10 times higher than three days prior, which was a really big shock to the ER doctors. They did not like that. So I literally carried Jack, he was five years old, into the hospital and I thought he had cancer or something worse. And, you know, I really wasn't sure were we going to leave the hospital with him.
And when I talked to the ER nurse that was taking Jack's blood, I just asked as they're taking his blood, do you think you could get one more vial and test for celiac one more time?
And he was like, oh, yeah, sure, we'll just get a doctor's order for that.
I also told the ER doctor. I was like, you know, we are not here just for IV hydration.
I want tests and I want to know why my kid is like this. And so luckily they took me seriously at that point. We had, you know, been to the ER other times in his childhood for IV hydration, but this felt very different to me. And so I wanted to make sure that we weren't just going to get the IV and then be discharged.
So he was there a couple days.
And after a day after his blood work was taken, I was just at home. My husband was at the hospital with Jack. I was sort of taking a break at home with my little two and I was just checking my chart and I happened to see his labs had just come back and I saw his celiac blood work was way more than 10 times the normal limit, which is sky high for celiac. And it's almost 100%. You'll have celiac if your blood work is that high. And so I basically called my husband and then I rushed to the hospital and I am not kidding that I went straight to the nurse's desk and I didn't even stop to see Jack in the hospital room because I knew my husband was with him. And I went straight to the nurse's desk and I just said, you need a page to the doctor, he has celiac and I want a repeat endoscopy. And so by this point, I knew a lot about celiac. I'd done my research, I'd read my books.
And so five minutes later, the doctor walked into Jack's room with about seven residents and they diagnosed him with celiac. They tried to discharge us and say we would get a follow up endoscopy. And I basically just said, no, we are staying until you do the endoscopy here and now. And so we got that back and they did the biopsies and of course it was positive for celiac. And in fact, the GI doctor after the surgery came back and said he could see with the naked eye all the damage on the VII for celiac. And so he, you know, that's not very common that they'll see it with their naked eye. Usually you need the biopsy to confirm it. So he was very sick.
Well, celiac is genetic. And so one month later, Lydia turned three and she had her well check at the pediatrician's office. And so I asked them to screen her for celiac because of the genetic component. And I actually asked them to do the screen for the gene for celiac because if you do not have the gene for celiac, you can't develop celiac. And so I thought, oh, if she doesn't have the gene, then we won't have to keep testing her for celiac later in life.
But lo and behold, she came back very positive blood test for celiac. And so I wasted no time and I got in with our GI doctor three days later and had the endoscopy and biopsies, you know, within a couple days after that. And she was positive for celiac.
So while Lydia didn't have as many red flags as Jack, looking back, she did have a lot of picky eating and some red flags. And it's just that the, the feeding challenges were probably her biggest. I thought with the diagnosis of two kids with celiac, I literally was over the moon, excited and happy. I thought, this is so great. We're going to heal their gut. They'll eat again, especially Lydia. She'll eat, she'll be on a gluten free diet and that's going to solve all of our problems.
And actually, things only got worse for Lydia. And so again, that's just another example of how opposite Jack and Lydia are. Jack started a gluten free diet and he felt empowered and he healed and he thrived where Lydia started a gluten free diet and she felt restricted and it only exacerbated her symptoms of what I thought was picky eating. But now I know it was something more.
Okay, so that was at age three for Lydia, age five for Jack, 2017.
Then we go to 2018. Lydia's four years old and she is still not eating very much. Variety and a very limited amount of food. She was very, very picky and she was unusually fatigued and grumpy.
We followed up with gi, our local GI and a dietitian this time and they actually told us to go dairy free and oat free, which was more restrictions. And I think that did not help. It probably also was another exacerbation to be more restricted.
And so I always say now I think it's really important to be on the least restrictive diet possible for kids especially.
So we did that for a while.
Fast forward two more years. We're kind of limping along.
It was, Lydia is six now and it's 2021.
She's eating less and less.
She honestly had about two really good safe foods. It was this one brand of chicken tenders that were gluten free and gluten free cheese pizza. And so she was having some increased anxiety around eating at this time. It's the middle of COVID and I Got to contemplating what is important in life. And I decided it was trying to really start to put our finger on why Lydia struggled to eat so much.
I thought there might still be something medically holding her back. It might still be related to celiac, maybe she didn't have full gut healing.
And so I really wanted to see the best of the best celiac doctors.
And it turned out we have one in Minnesota close to us. Still was driving quite a bit, but I thought it was worth it to just get a second opinion on what they thought we could do to help our daughter.
So In April of 2021, Lydia is six years old. We went and see a pediatric GI celiac specialist. And we began to sort through the puzzle and make sense of why it was so hard for Lydia to eat. She was diagnosed with failure to thrive and constipation. At this point, she kind of plateaued on the growth curve and honestly fallen a little bit as well. She had gone from around the 60th percentile when she was 2 years old to the 3rd percentile at age 6. And so she had. Had fallen quite a bit, but still on the growth chart. Okay, so we tweaked a few things. Six months later, we follow up with this gi and she's seven now, and she was diagnosed with anemia. We had never checked her iron. I don't know why, but I look back at all the records and I can't find any blood work on her iron and, or her ferritin or her iron saturation levels. And it was so low, like, so low, you almost need a blood transfusion. But, yeah, it was crazy.
I again felt similar to when Jack was diagnosed with celiac, where I thought, oh, we know what's wrong, we know why she doesn't feel good. We need to get her iron up and then she'll start to eat and then she won't be so weak, she won't be so fatigued.
So we started iron, and it did help.
It took a long time, over a year, to get her iron back to a normal level.
And we had to test two more times in that time frame with blood work. My kids, let me tell you, they are really good at sitting still and getting their blood work.
And that's just, you know, when you have all these medical appointments, you kind of have to learn the strategies for coping through that difficulty.
So In March of 2022, our GI doctor said, you know what, let's start feeding therapy. You've never done any therapy for her.
Let's start that and get an evaluation on her eating.
And so at that point she was diagnosed with dysphagia and pediatric feeding disorder. And I had never heard of pediatric feeding disorder. I'd heard of everything else because I have a nursing background, but I had never heard of pediatric feeding disorder. So that was new. And really I do think she was affected by all four domains. I guess it's a little bit borderline if she was affected on the medical side because did she really have any cardiorespiratory problems?
I don't think so for sure, but she did have some reflux and she did have a lot of upper respiratory infections which would make it hard to eat and swallow and breathe.
But for sure the other three domains she was had a lot of nutritional deficiencies, she lacked a lot of skills in eating with jaw strength and chewing and swallowing and she had all of the psychosocial aspects with fear of eating.
[00:21:39] Speaker B: 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] matters.org that's questionnaire feeding matters. Org or type ICFQ in your search bar.
[00:22:10] Speaker A: So we worked with an OT and I just love those OTS. They were so non judgmental. They just took us as we were and worked with us and just would help us step by step get one, one part closer to enjoying food in November of 2022. So a little more than six months later after feeding therapy was initiated. Lydia's eight now and she was diagnosed with anxiety and arfid. We saw psychology and psychiatry.
I do want to say that these providers, which would include, you know, our celiac, GI, doctor, so many OTs, psychology, dietitian, they advocated for Lydia and I had never experienced that before. I get teary eyed thinking about that. But I was so used to having to push for what my kids needed and yeah, I felt like for the first time they were understanding her needs and they were seeing us and they were willing to help.
Sorry Gu, it's emotional but it was very. No, it took, yeah, it was very hopeful to feel like the, for how to help us. Yeah, they heard us.
So I'm thankful for these providers and if anyone's listening they, you know who you are and you know, but I love to read.
I want a book. Give me all the books. I want to read everything. I want to like Gather the information.
And so I am asking them, you know, what book do you recommend on pfd? What book on arfid? What do you have for me? And they are the very ones that gave me a few resources, but they directed me to feeding matters. And so that is for sure my connection to this organization.
Okay, so another year later, In March of 2024, we entered intensive feeding therapy.
And I am glad we did it.
I was really proud of Lydia to see a persistence in her that I had never seen before.
And there was foods she. She tried over 15 different foods that she had never tried before in her life.
And so that was really encouraging to, to see and work on.
We stayed at the Ronald McDonald House and that was a really positive experience for us.
I like to say it was our secret sauce to making intensive feeding therapy. Help is provided us with a safe and a fun space that was away from the stress of school, the stress of brothers, the busyness of life.
Oh my gosh, they have the therapy dogs. They have so many activities every evening, movie nights, yoga, painting. They bring, you know, like the nature center brings things to them. So it was really a great experience to stay there and to go through that intensive feeding program. It was only two weeks long, so it was short in comparison to what many other people have done.
It was because Lydia had sort of plateaued in her feeding therapy with ot and they were hoping that with this intensive program we could kind of jump to the next level.
[00:25:53] Speaker C: Yeah, that, that's great. A two week intensive and yeah, it's.
[00:25:58] Speaker A: Like a tune up, right?
[00:26:00] Speaker C: Yeah, that's pretty great.
[00:26:03] Speaker A: So she, she did well through the end of the school year and into the summer. But this past fall, 2024, she really struggled at the beginning of the school year. And beginning of school year has always been a struggle for her. And part of that is the anxiety.
But then what's affected is her eating. And so I did reach out to our psychologist from intensive this fall we started a nutritional shake, which has been a game changer. But also she turned 10. And so we switched from doing occupational therapy to doing cognitive behavioral therapy with a psychologist who specializes in exposure therapy and anxiety.
And we're doing a program, CBT for ARFID, which is new and usually is offered for kids 12 and older. But Lydia is only 10, so they kind of were tailoring it specific to Lydia because cognitively she was ready for, for that. And it is surprisingly going great. We're kind of winding down our time with that therapy and transitioning, just spending back to Regular life, which is, you know, going to include continuing to do exposures most days, working hard to incorporate the foods that she is learning to tolerate. I want to say that I'm super proud that Lydia has moved up three lines on the growth curve.
She's in a much better position to continue to move forward and to do.
I know it's huge.
You know, I want to share one quick story. When she was 8, our OT had her lay down on the big white paper, like, a roll of paper, and trace her body. And then she got to kind of, like, color in the body and decorate and say some words of, like, defining herself, which I thought was a really sweet, cool idea. Um, but we took it home, we rolled it up, put it under her bed. A year later, we're cleaning her room, and she found it. She pulls it out, lays it out, and she lays down next to it. And I am not kidding when she yells out, it's a lie. I'm bigger now. And she was so excited.
So I actually got. I was like, oh, my gosh, I have to videotape this. Like, she was, like, dancing around the room, laying down next to it, looking at it, jumping up and down, saying, it's a lie. I'm bigger now. I'm bigger now. I've grown. So it was really a proud moment.
[00:28:44] Speaker B: Heidi.
[00:28:45] Speaker A: Yeah, I had to share it with our ot. Yeah, we were all just so excited. But so, yeah, she is growing. And, you know, that sort of brings us to today. Just last month, February 2025, I did attend the International Pediatric Feeding Disorder Conference in person. I loved every minute of it.
Again, I love the information, the research, sitting, and, like, just soaking it all in, including soaking in the sunshine.
You know, I wanted to just also touch quickly on mentioning the sunshine when all this started.
I am not a very anxious person, but a little bit anxious. But everything with this, you know, feeding situation made me feel more anxious than I'd ever felt in my life before. And I live in Minnesota. We don't get a lot of sunshine in the winter. I take my vitamin D, but I've always known I've struggled a little bit with seasonal affect disorder. And so when Lydia was diagnosed with pediatric feed disorder and I knew we had to do this therapy, I just decided, you know what? I think it's time for me to try a medication for myself. And it has been so helpful to take the edge off of, like, my worry and also help with seasonal affect disorder. So that's been, you know, one of the things that sometimes gets overlooked is the mental health of the caregivers. And while I wouldn't say that, you know, that it's like a life altering change, I do think it has been helpful. And like I said, it takes the edge off. And I think when you're thinking about caregivers, you know that analogy of like on the airplane putting your oxygen mask on first before helping someone else. To me that felt like I just needed like a little bit of extra oxygen just to kind of be able to weather this season. So I just want to encourage other caregivers out there that if you're wondering, you know, what can I do to help my, myself, I mean, there are so many tools. Yoga, deep breathing, walking, outside exercise. Those are all tools in the toolbox. And so is a medication. So I think, you know, that can be helpful just in shaping how you work with your kids and also just shows your kids you're willing to put an effort in for yourself if you're going to put that effort in for them. So I think that's my good, very good point.
[00:31:22] Speaker C: I mean, just acknowledging that and that there are lots of tools in the toolbox, not only for your, your loved ones, but for yourself and having yourself ready to.
Being more ready to take care of them by taking care of yourself.
[00:31:41] Speaker A: And.
[00:31:41] Speaker C: Being in a better space to do that because it's, it's not a sprint, it's a marathon. So we have to be in our best condition to.
Yeah, be ready for the marathon.
[00:31:55] Speaker B: Feather it and. Yeah, it puts you a lot.
[00:32:00] Speaker A: Yeah, 100%.
Okay. So what did feeding struggles look like for us?
I would say when I think back on Lydia's story, she had trouble latching.
I would feed her when she was asleep. Like dream, Like a dream feed. It was hard for her to relax when she was awake and to eat. She did not have any interest in table food. She would turn her face, push away. She, she was disinterested in touching, smelling or eating food. She didn't even want to look at it.
She had a lot of respiratory illnesses, which is probably from her malnutrition, maybe reflux. And then she also had a lot of vomiting, which I now know is from gluten. And that is her main reaction if she gets gluten is she'll, she'll have vomiting and she was falling off the growth chart. And I wanted to note that, you know, when I was in college, I studied abroad in Uganda, which is in East Africa. And I literally worked with malnourished children.
Lydia did not look like these children. I Had worked with. And so it was not on my radar to think that she was malnourished or struggling to eat. But I just want to make it clear to parents that malnutrition doesn't have to have one kind of a look. You might be on the growth curve and still be malnourished. And so I think that's an important point to just remember.
She was eliminating whole food groups, you know, also just not trying new foods from a lot of food groups. She. She didn't do any animal protein. That is still our biggest challenge.
No beans or legumes, no cooked veggies, no grains like rice, which if you're gluten free, you kind of need to do rice.
We do oats now, which is good, but very restrictive intake. She had only a couple safe foods and it had to be particular brands. And it was very particular how the food was prepared. No flexibility.
She was withdrawing from social situations due to the fear of food. Like, I have one example of, you know, her cousins were asking her to sleep over, and she had slept over at their house before, but she didn't want to go. Didn't want to go, didn't want to go. And then finally I just looked at her and I said, are you worried about what you're going to eat there? And then she was just like, yes. And I was like, oh, well, let's plan. Let's make a plan and then you can go.
She did not sit at the table with us. She was running, hiding at mealtime. She was crying when food was placed before her. And we didn't even expect her to eat it. We just wanted it to be on the table with her. And she was still crying. She had a lot of dysregulation.
She would take 20 minutes to eat a food and then spit it out.
So we needed a lot of skills with that. She just continues to have this dry cough and a hypersensitive throat, which we are working with GI on.
And she has a fear of eating in front of people. It's really hard to do a meal with other families. At our house we do it, but it's. She doesn't often eat with us.
[00:35:20] Speaker B: I feel like school would affect that too.
[00:35:22] Speaker A: Huh. The whole day she was going without eating. This year we started a nutrition shake and she drinks that now at lunch, which has been like a game changer to be able to keep her weight up and.
Yeah. So she had a lot of symptoms.
[00:35:36] Speaker B: Well, yeah. And Heidi, thank you for sharing this, for sharing Lydia's story, for sharing Jack's story for sharing your whole family story story.
[00:35:44] Speaker A: It's.
[00:35:45] Speaker B: It's really important and it's really impactful and you can see how flex it is and how even when you think you find an answer, there is other stuff that's kind of hiding under the surface sometimes too. And as you know, on the consortium, we've always talked about, like, what does success mean for families? And so I'd love to hear what success means to you, Lydia.
[00:36:05] Speaker A: Yeah, so I guess I was just telling our psychologist, maybe it's time to redefine success. In my mind, I had been thinking, success was being able to go out to a restaurant and enjoy eating hamburger or chicken and mashed potatoes, obviously gluten free.
And it felt like success would, would be going to a friend's house for dinner and being able to eat whatever they served as long as it was gluten free.
And also success would be getting all your nutrition from food able to grow and maintain a healthy weight. When I asked my husband what he thought success would look like for Lydia, he said, oh, oh, she would be able to eat like her younger brother.
And he also said, or we would be thinking about food less than 5% of the day.
But I am starting to think maybe success for Lydia is that she's willing to try a new food and to continue to have new exposures.
Maybe success for Lydia is that she's able to maintain her weight and grow.
And success for Lydia is that she's not missing any nutrients because she's willingly doing her nutritional shake to help fill in the gaps.
Maybe success for Lydia is that she has two restaurants she enjoys going out to eat at. She's starting to find some joy in food.
And so, you know, we are going to continue doing exposures every day, try to incorporate those foods. We're going to continue to meal plan every day for Lydia, we plan the day before what she's going to eat so that we can take some of the fear out of what's going to be served and so that we have an idea of how to get all the calories in that she needs. You know, so that's still going to continue. We're still going to continue buying nutrition shakes and vitamins specific for her needs. But I guess I am opening up to the possibility that there are other ways to define success and we can always be doing more work. But. But we need to find excitement in the fact that Lydia has energy and stamina to do the things that she loves. She is growing and thriving at school and Socially and she has curiosity and an open mind as she moves forward on her eating path and journey. So it doesn't mean as, as we're winding down on therapy and we're going to start transitioning to doing this at home. It doesn't mean that we're done or that we are giving up on her or we're content with the status quo, but we, you know, are. There's always more growth to happen.
And so we are proud of where she's at and happy for how that has shaped our family. And, you know, we have learned a lot from her.
I guess I wanted to also say just a follow up on Jack. He was diagnosed with celiac and we took that diet very seriously after he was so sick.
His speech took off after he was diagnosed with celiac. And I'm happy to report he is an amazing communicator and at times you can't get him to stop talking.
I also just want that at 5, he could barely walk. And just five years later, at age 10, he hiked 20 miles to summit Yosemite's Half Dome with my husband, which is. No, I mean, you have to get a permit to do that. It was a big deal.
[00:39:30] Speaker C: Yeah.
[00:39:32] Speaker A: He's made remarkable recovery and he embraces the gluten free eating lifestyle. He also remembers how sick he was, which helps with his compliance. He was a picky eater, but he no longer is.
Lydia has been, you know, different from that and it's been helpful to differentiate what a picky eater is, what a feeding disorder is. So yeah, that's most of our journey so far.
We have faith as a family and I think this is God's humor to our family. But during this journey, I do not know why other than it just, you know, is like the icing on the cake. But I got Covid in 2021 and my symptoms were GI related and along parallel to Lydia's journey with eating. I myself was seeing GI at a different clinic and got diagnosed with sibo, which is a big deal. And I was doing breath tests and I was glucose intolerant, fructose intolerant, lactose intolerant.
And they wanted me to see a dietitian and go on the low FODMAP diet and take this specific antibiotic that in the US you can only get for Crohn's. So I had to go through Canada to get the antibiotic.
So here I am bawling in the dietitian's office saying, you want me to do what diet? I am supposed to Eat gluten free with my daughter and show her and model her how to eat normally. And you're asking me to do what?
So it was kind of like, I don't know. I look back and I just think it's funny and humorous that I had my own little short stint of an eating journey, and I am totally healthy now. I tolerate it all now, except I'm still lactose intolerant. But I do want to say, when I had to reintroduce food after doing the low fodmap diet for two months, it was scary. I was wondering, is this give me all my symptoms back again? Is this gonna make me so sick again? And it gave me a new situation for what Lydia has to go through when she tries a new food and wonders, is this gonna hurt my stomach the way gluten hurt my stomach? I mean, she has so much trauma from eating. And so I think maybe that's why I had to go through that little stint of sibo. I don't know. But that or it's just God's humor.
[00:42:09] Speaker B: It's. Yeah, it's crazy how situations can help us, like, relate or learn in different ways. Let's transition a little bit into how you kind of found out about the consortium and what your thoughts are, being part of that.
[00:42:26] Speaker A: Yeah. So I had been connected with Feeding Matters. Our OT had recommended I connect with you guys. And so I had been to two of the virtual conferences. And again, I love soaking up all the information that's put out there.
So when I got an email about the consortium, I was very intrigued. And I've always been interested in doing research because I have so many questions around celiac. Like, for one, how come Jack couldn't talk, but once he was diagnosed with celiac and went completely gluten free, his speech took off? You know, and even our celiac doctor says, yeah, I've seen that in kids with celiac. And so, you know, I just want to know, like, why? Right. So I have all these questions about celiac. And so when I saw that there was a research consortium for feeding matters with pediatric feeding disorder, I was, you know, thinking, oh, man, I have had so many questions about Lydia with her pediatric feeding disorder. This might be a great avenue to kind of learn more. But, you know, what really drew me into, too, was your commitment to help us understand research with. With the help of pcori. And, you know, how do you frame research questions? How are research projects developed?
What research is there currently on pediatric feeding disorder? And so I think all of that drew me in. And so I was very interested in this group from the get go. So yeah, it's been very personal for me.
[00:44:04] Speaker B: Thank you. And that's, I think that's what we've like really enjoyed about the entire consortium is just the commitment to learning the research and really contributing to it from a perspective that the field hasn't really been used to hearing before. Now, as we kind of close out, what do you think are some of the biggest challenges in making the research more patient and family centered and, and from your perspective?
[00:44:35] Speaker A: Well, I think first of all, it would have to be time. I do think it's more than a full time job to feed kids and to get them to therapy.
You know, I've stayed home with my kids since they were born, but once they were diagnosed with celiac and then pediatric feeding disorder, I mean, oh man, it is a full time job to cook and feed these kids.
Yes. And so I think it is hard to find time, let alone to have perspective and to form and reflect ideas on pediatric being disorder. You know, it's, it's hard to even find time to reflect on the journey. So I think that would be the biggest one. Um, I think the second one would be.
So many of us parents or caregivers to kids with pediatric feeding disorder, we don't necessarily believe that we are the experts or that we have a valid perspective on how to shape pediatric feeding disorder.
You know, we wonder, like, is my child's journey normal? Is this the trajectory they're supposed to be on? What if it's not? And somebody else might know more than I do? And so I think that can hold us back from wanting to get involved. But luckily, I would say the research consortium has been empowering us and it does feel like Feeding Matters itself is helping to bridge that gap.
[00:46:02] Speaker B: Amazing, Heidi, thank you.
Anything that else that you want to share or that you feel like you didn't get to share yet?
[00:46:11] Speaker A: Well, let's see. I think I'm, I, I want to say I am happy that Feeding Matters has such a strong virtual format. I think that does help make it possible for families all across the United States to get involved.
You know, I have been telling people before my kids were diagnosed with celiac, like, what you eat matters, what you eat matters.
And it's different for every person. And so just because we eat gluten free because of celiac doesn't mean that that's the diet that's right for you. I think it's really important to be on the least restrictive diet possible for your kids and for yourself. But I really do think what you eat matters. And so it's funny that your organization is called Feeding Matters, because that has been my mantra for, you know, probably almost a decade.
Yeah, I would say to people, trust your gut. Which, you know the pun is intended, right? Like, I think a mom's instinct really is accurate. Trust your gut.
And I always also say, life is a picnic. No, really, literally. We pack our food and bring it with us everywhere. Like we literally picnic every day.
So I think that's funny to think about.
[00:47:35] Speaker B: Yeah. No, it's so true. So true.
Well, Heidi, just thank you for your time and thank you for being in this space with us and for sharing with our community, all of our parents and caregivers and even individuals themselves. Really appreciate the stories. But also it impacts healthcare professionals and how they care for other families as well. So thank you for your time and um, thank you for listening. Have a good one.
[00:48:03] Speaker D: Wouldn't it be great if you could access some of the best sessions from the Feeding Matters International PFD Conference whenever and wherever? Well, good news, you can. Our On Demand conference lets you access key sessions and more on your own time. You'll get high quality recordings of sessions that discuss the intersection of food insecurity and feeding disorders, that explore how a holistic, multi domain view of PFD improves diagnosis and treatment outcomes, that identify actionable steps that will propel the field of PFD forward and that answer the question, what does success look like? During the Shannon Goldwater Summit for Change? All of these amazing on demand offerings and more are available for viewing beginning March 1 through April 30. We have great, great on demand pricing for families, students and healthcare professionals, including a Healthcare Professionals group rate. Visit feedingmatters.org conference to view the on demand agenda, see available CEUs and register today.
