Andrea P.'s journey with VEO IBD and the SCD

Your baby is bleeding, no one has a clear answer, and you’re expected to make high stakes decisions while running on zero sleep. That’s the reality Andrea Potvin lived when her daughter developed bloody stools at five months old and was ultimately diagnosed with ulcerative colitis at just 10 months old, a form often described as very early onset IBD (VEO-IBD).

We talk through the winding road to diagnosis, the crushing pace of pediatric hospital life, and what it’s like to try medication after medication while your child becomes dangerously anemic. Andrea shares how her family kept pushing for more opinions, searched for doctors with deeper IBD experience, and stayed data-driven with notebooks, symptom tracking, bloodwork, and stool tests. We also dig into diet therapy, including how they implemented the Specific Carbohydrate Diet (SCD) in a staged way and why monitoring inflammation markers like fecal calprotectin still matters when things look “better.”

Andrea also explains why they added functional and integrative care, what functional stool testing showed, and how mental health support became essential for the whole family. Then we get practical about the everyday stuff: school lunches, restaurants, birthday parties, and teaching a five-year-old how to advocate for her own food needs without feeling isolated. That journey eventually led Andrea and her husband, Nick to start Moon & Co Wellness, their wellness brand built to help other families feel less alone.

Subscribe for more real talk about IBD, share this with someone who needs hope, and leave a review so more families can find these stories.

Links: 

• Moon & Co Wellness on Instagram
• Comparing and Contrasting Therapeutic Diets for IBD- GI Nutrition Foundation 
• Information on VEO IBD- Children's Hospital of Philadelphia

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Transcript

Welcome To Battle Moments

SPEAKER_01 0:00

Hi, I'm Alicia.

SPEAKER_02 0:01

And I'm Robin.

SPEAKER_01 0:02

And you're listening to Battle Moments, the podcast sharing real talk about the realities of ID. This week we talked to Andrea Potfin. Andrea's daughter was only 10 months old when she was diagnosed with ulcerative colitis. We talked to them about the diagnosis process and the many things they tried to get her disease under control. And we talked to her about how she started to research the specific carbohydrate diet and pushed to try that with her daughter. This diet seemed to really help her. And so we talk about how they integrated it into their family and also how they helped their daughter navigate having a different diet socially with her peers and also with their friend group. We talk about the trauma that Andrea and Nick faced as they helped their daughter get to a diagnosis and to control their disease and how that encouraged them to go outside of their normal careers and to create Moonin Co. Nick became a headspace certified mental health coach, and Andrea is an integrative health practitioner. They started Mooninco to help families like theirs to navigate similar journeys. We know you'll enjoy this conversation just as much as we did. Cheers.

SPEAKER_02 1:07

Hi, everybody. Welcome to Bell Moments. This is Robin.

SPEAKER_01 1:11

Hi, everyone. This is Alicia, and we are so excited to be joined by Andrea Potvin. Andrea, welcome to the show. Thank you so much for having me. We are so excited to hear your story. But first unprofessional question for you is what are you drinking?

SPEAKER_00 1:24

I have a sparkling water mixed with ginger beer. Basically, a non-alcoholic mule.

SPEAKER_01 1:30

That sounds nice, actually.

SPEAKER_00 1:32

I like that a lot. Yeah. Robin, what about you?

SPEAKER_02 1:35

I am drinking hot tea, mint tea. And then I always have my water.

SPEAKER_01 1:39

Well, I definitely remembered this and totally had it on my calendar. And so I unfortunately did not make myself a cocktail, but I did pick up a uh beech plum lacroix. And so, and it's pretty, it's pretty gosh darn good. I do like it. That does sound funny. I know that plums grow in beach regions, though. It doesn't feel like plums feel like more of a northern fruit than a beach. They really do.

SPEAKER_00 2:00

Yeah, I have not had that one, but I like LaCroix, so I'm sure it's good.

Bloody Stools To A UC Diagnosis

SPEAKER_01 2:04

Anyway, so well, cheers, everybody. Cheers. Cheers. Okay, Andrea. Next question for you is what is your IBD story?

Finding Support You Can Trust

SPEAKER_00 2:12

My daughter was born in 2020 and she started having bloody stools at five months old. So we went back and forth through a lot of testing, and she was finally diagnosed with ulcerative colitis when she was 10 months old, which at the time my husband and I hadn't really even heard of it, right? I had heard of Crohn's, but I had never heard of UC and I really didn't know what IBD was. So we were, you know, I guess in a way relieved to finally have some sort of direction because up until then it was it's an allergy, it's this, it's that. I think at least having that direction was helpful. But, you know, she was so little at the time, right? It was very hard to process it all. So we worked with GI and tried different medications. She was on different biologics, but she was so anemic just because she was losing so much blood every day. So it was really a struggle to really get her to a stable place. And through that, we started doing our own research of are there other options? Like some of this, this just isn't doesn't seem to be working for her. And we started researching diet therapy, specifically the specific carbohydrate diet. And I was reading stories of other people that had used diet to help feel better, right? So most of our doctors were somewhat resistant to it. And so we stayed on the course, we tried, she was on Remicaid, Humera, we went to Stellera. And at that point, they were all saying, like, she just this is it. Like we really just need to do surgery. But she was so sick that they said she really isn't healthy enough for surgery. So it was, it was a very scary time, right? So, but we we got a second opinion, a third opinion, a fourth opinion. We worked with some doctors virtually, some in person. We were in Florida at the time, and we connected with them on actually on social media in a support group, and she had recommended finding doctor that a doctor that was more open to integrating diet into the therapy approach. So we started working with him, and long story short, we were eventually able to implement the SCD with her. We had to strip back everything she was doing. The diet is very much stage-based of starting with the easiest to digest foods and then layering in more over time. And once we were able to really peel back everything, including some of the medications she was on, she started to do better. She started to have less bowel movements, less blood. And we were so thankful that she started to turn the corner. So that was three years ago now. She's five now. So she's now been doing amazing. She, we still work with GI, but now instead of seeing them, you know, and sometimes we were seeing at least one doctor a week, either her GI, a hematologist, her pediatrician. And now we see her GI every six months, and they help us run blood work, make we do stool tests and just make sure everything's in a good place. And then we also through that started working with a functional practitioner that helps us run some different labs of like I had done my own research on things that I wanted to test for that our traditional GI just didn't really didn't think were necessary. But I felt like I just want to know, I want more data. I want as much data as I can get. So we ran tested for mold, heavy metals, different things, just to see, like more almost to rule things out versus like necessarily find a silver bullet, right? Like I think, you know, definitely in our case, and I think in a lot of IBD cases, right? You I don't know that you're you're never going to get the silver bullet for most people, right? Of like, why did this happen? Or it's, you know, it's just probably, you know, just not reality, right? So, but it was helpful to us to kind of rule out things that we knew that we could work on if they did come back positive. So once my daughter started getting better, my husband and I realized like this was very traumatic for all of us as a family, right? Like, not obviously for her. And, you know, I feel awful in some ways of some of the things that she had to go through at such a young age of hospitalizations, blood transfusions, like blood work every week because she was so like on the tipping point. You know, we had to know where her hemoglobin was every week. So I know that she had some trauma from that, but my husband and I also did the being new parents, and she was born during COVID. So it was like dealing with that, dealing with a sick child. We both really felt like we all have a lot to process here. And my husband really focused on the mental health side of it of just trying to get himself better in a better mental health place. He took up meditation, really learned a lot about meditation, and then he actually then went to get certified through Headspace as a certified mental health coach. Then I kind of went the physical route of I want to just know more about the body. I'm an accountant by trade. I've been a CPA for over 20, I guess almost 20 years, but I felt this just curiosity of I want to know more, I want to understand more. And so I got an integrative health practitioner certification. And then we developed our brand really around just sharing our experience, support, and try. We know when we were in that situation, it was some days felt so lonely, right? Even though we had each other, we had our family and friends, like we had to make decisions every almost it felt like every day of like we have to make a decision right now. What do we do? Do we go to the hospital? Do we try this? Do we try that? And you know, it's it's a very hard experience to go through as an individual, as a, you know, and I obviously don't know how my daughter feels as the actual patient, but as the caregiver, it's it can be very isolating. So we really feel strongly about sharing our story and hopefully helping others that just feel like they are in that dark, dark place that I know a lot of families and individuals are, you know, dealing with.

SPEAKER_01 8:04

Yeah, I think the, you know, that's called, we've talked to some doctors that that's called very early onset VEO IBDs for those kiddos that are really young, I think under two that are developing inflammatory bowel disease. And so that's a very specific subset of inflammatory bowel disease and very specialized, and it's not a huge group of people. So I'm sure it was really isolating and not necessarily easy to find families. Like you couldn't go to a regular support group and walk in the door and get what you needed, probably from them just because it's going to be a lot of adults or people who are people have children who are diagnosed a little bit later. When you were looking for support, where did you end up finding reliable support? Because I think that's the other thing is there's so much Reddit is a wonderful and terrible place. Facebook, wonderful and terrible place. And so, you know, where did you find reliable support?

SPEAKER_00 8:49

I was in and I'm still in some Facebook groups. So I think that gave me some support. One of the moms I connected with, I think I found on social media, which I agree. It can be, you know, you really have to like be careful with these things. And then this was a very weird, I think the universe just like giving us a little gift. We were at the hospital in our town. This is right before she was diagnosed, getting our blood work done for this second day in a row because the lab messed up. I don't know, something. We ended up going to the hospital and we sat down next to a dad with his son who was also getting blood work done. And at the time, you know, you weren't even supposed to sit near people in the room, right? Because this was now 2021, I guess. And he said, Oh, you can sit next to me, like it's fine, whatever. And we ended up talking to him. It turned out his son also has IBD. He was one, there were only four kids in our the city or the area we lived in that had VEO IBD, and he was one of them. And then we connected with them. His dad wanted to exchange numbers because they he felt like this is very, you know, unique that we would run into somebody in this situation with a young child. So we connected with them, and he and his wife both were huge support for my husband and I. I would text her just having a bad day, just completely vent on her. And she was so like it just helped so much to be able to talk to another mom that one, you know, we actually knew in person, right, that we could get together. Her son also did the SCD for a while. So we would exchange recipes, we would get together and like bake together, different things. So it was, I always think back to that day of like we were feeling so low because she was just on such a teeter-totter at that point, and just what are the chances that we would be in that room with that person at that time, right? So it's sometimes you find support in the places that you weren't even looking for, right? But I do think that was very helpful. And then the doctor that we worked with when we implemented the diet, the hospital that he works at, they actually have a parent, a mother that she is like their liaison to help families with diet if they are using diet as part of their therapy. She's a resource when we were we were inpatient at that hospital at one point in the PICU, and the doctor brought her in to introduce her to us, and then she became another support for us, right? So she's um she's been in this, done it, right? But she, you know, isn't the doctor, but has their support to have families lean on her. So she gave us some new recipes, some ideas for things we hadn't tried. And that was really early on when we were just starting to actually do the diet. So I feel like you have to look, you have to turn over a lot of rocks sometimes. But once you find, I feel like that support or those places that feel like those safe places with people that really understand what you're going through, right? I mean, our family, our friends are super supportive and have been, but finding people that really have been in those situations just has a different type of connection, I feel like.

Trauma, Meds, And Second Opinions

SPEAKER_01 11:45

Absolutely. I and we talk about this, you know, I don't live with inflammatory bowel disease. And I'm certainly empathetic and sympathetic to what's happening, but I will not know what it's like to be Robin or to be our guests that are living with this disease. And I'm I'm very cognizant of that and try to make sure that I change the way I speak about things or I make sure that I'm like leaving space to make sure that the that I'm not the one in filling in the gaps here, unless it's just to be on my soapbox about the healthcare system, which I'm always happy to do that. So that that one I take full privilege to be able to talk about that one. But you know, I do it is something I I have to try to stay really mindful of of, you know, kind of as I talk to people. So you're right. I think finding the community that fits with you, I think makes a lot of sense. And so I what you know, what a remarkable day it was that you were sitting next to those folks and and had got what you needed.

SPEAKER_02 12:32

I don't want us to get into too dark of a place, but would you mind talking a little bit about what happened when you were able to finally get your child diagnosed at 10 months where they can't even like say what hurts or where it hurts or what's happening because I know that it will help somebody who's listening.

SPEAKER_00 12:54

Yeah, it was like I said, in a way, it was a relief to have a direction of okay, now we know it's not. We did like Meckle scan, like was her stomach twisted and like we, you know, we were tr looking for all these things that I don't know if they would have been better, you know, better or worse, you know, but like it just it was yeah, it was very hard to hear those words too, because then I knew, oh no, this is this is very serious. I mean, we knew it was serious, right? We had seen her at that point, she had been so sick for five months of she'd been hospitalized, I think, three times in that. I think she was seven months old when she had her first blood transfusion. It was awful, it was awful. It's some of the, you know, and it was it was hard to see your infant, right? She's not even a year old. And that was a big challenge through that, even though we had a diagnosis, like, okay, well, what do we do now? Right. They're like, Well, we start steroids, we start this, and the doctor gave us different medicines. I think we started with a mesolamine, which I think is a pretty standard. And but my daughter couldn't eat it. I mean, it was like, it's like the little, I'm sure you know what I'm talking about, but it's like little beads, right? Almost. And I called the doctor crying, and I said, I she can't take it. Like, I can't give this to her. And she said, just put it in a scoop of, just put it in Hershey's chocolate syrup. And I remember thinking, she's not even a year old and she needs this two or three times a day. Like, that's not a good solution for me. Like it, and I just felt so alone in that moment, right? Of like, I have a sub-one-year-old child, and you're telling me, you know, it felt like that that doctor was one we didn't work with for too long because it was really hard. I felt like she we just didn't connect with her. But some of the things she had said was just like, oh, it's just so easy. And it's like, there's nothing about this that's easy, right? And that's not me, you know, try to be the victim, but it was very difficult. Like at one point, she was on, I think, like eight different medications a day. And you're talking like a one-year-old, right? Like it's it's it was hard, right? And we were on board to follow what the doctors were telling us, but it was not working, right? We were not seeing improvement, and that's where it felt like, okay, we I think need to be a little more assertive and in a very professional way, right? Like we, my biggest thing is to just if you don't feel in your stomach that you're getting the care that really feels right for you, you have absolutely have the right to raise questions, to ask questions, right? Like sometimes we felt like the doctor didn't even want us to ask questions, and that's just not fair, right? So I think we got that confidence of we're getting a second opinion. And some of our doctors were, they were actually happy to, you know, we worked with a doctor from a large children's hospital virtually, and one of the GIs on our current team was excited about it in the sense that they've seen more cases than this doctor had, right? And he was interested in learning from them. And so that I think gave us more confidence too of okay, like we are doing the right thing here. We're gonna turn over every rock until we find what works for our daughter. Yeah, but in the beginning, it was it was pretty scary for sure.

Building A Whole Person Care Team

SPEAKER_02 15:56

I think it's important to just highlight what you said. Like the doctor that's part of your team now was excited to help you because they see more of this. And I think that not only parents of children, but patients need to hear that. Like, just because your doctor sees IBD doesn't mean they see enough IBD to know how to help you. Sometimes IBD could be 5% of their practice, 10% of their practice, 15% of their practice. And I can tell you, if you have a complicated case, there is no way that somebody who sees 15% of their practice is IBD knows enough about IBD to help you. I'm sorry, physicians that are listening to this, it is just the truth. Like I've had to drive, you know, 12, 13 hours round trip to get to somebody who only sees IBD because I need somebody who sees it enough to know what's happening. So, parents, if you're listening, you have the right to ask questions. You have the right to get a second and third and fourth opinion. You have the right to take care of your child the way that you think is best. So thank you for that. I'm very interested in your team because it includes traditional GI, it includes functional medicine. You said your husband got into meditation. Like there's a whole bunch of complementary treatments for lack of a better term that you're combining together with traditional medicine. And I really like that. I'm a little bit woo-woo. I love acupuncture and yoga, and it helps me manage my stress and pain sometimes, depending. And so, so could you tell me about what led you to like building out that team, finding the functional person that works with pediatric patients and would work with you with a very rare case?

Learning IBD From Scratch

SPEAKER_00 17:37

I think where it first came onto our radar was actually one of the moms that I connected with online and some of the groups I was in too, V E O I B D groups, they had said a lot of people had said, we have traditional GI, we also work with a functional practitioner that, in their opinion, and now in mine, I feel like can sometimes give you deeper level testing in some ways. So that's where we were interested, and and that idea of marrying the different kinds of philosophies together, right? As and looking at you as a whole person and not just, you know, like we meet with our GI, but then we have to relay that back to the pediatrician. And then the hematologist doesn't even talk to the GI, but they're in the same building. You know, it's it's complicated, right? And so one thing is, you know, you as the patient or the caregiver unfortunately have to handle that. Or if you work with have a good social worker or a team, right? Like then that helps a lot, obviously. But we didn't have that. We started reaching out to local functional practitioners in our area. And the first two that we met with just were not comfortable taking us on. My daughter was too young and too sick, in their opinion, which was disappointing. But also, I would much rather that a medical profession or any professional really, right, tells me up front that they're not comfortable taking on my case than to fake it, right? Especially with health. So we finally did get connected with a, she's actually she was an acupuncturist that also does functional health, and she helped kind of open our eyes to different things. Like we did, we did some in-depth testing with her to look at things and some of the stool tests we did. I felt like we got pages of information back, whereas some of the traditional ones we got, I thought didn't just didn't give us quite as many details or or markers. So that to me was helpful. But she also does muscle testing, which is pretty woo-woo, right? So it's like the idea of tapping into your body to communicate what it needs or to help release emotional trauma that's being held in your body, which, you know, I I consider myself pretty woo-woo too, but I I it was powerful, it was very interesting. And that opened my eyes to this whole other world of like, okay, but marry that together with all of it, right? And that's when we had also hired a nutritionist that focuses on IBD kids. And like we were able to kind of build out that team. And I have the, you know, realization that that's not everyone's situation. We paid for a lot of this out of pocket. My husband and I both work now, you know, we've worked fully remote or in different jobs where it's very flexible, where we could spend three hours on the phone fighting with our insurance company, which I understand a lot of people do not have that luxury, right? And we could drive to your point. We drove our GI for a couple of years was three-hour drive away, right? And we're okay with that because we we knew that it worked for us. And that's part of I think what we want to share with people is, you know, we've done a lot of research for our specific situation in our family. We don't have the answers for everyone, of course, but like we do have some tips or or things that we've kind of picked up through this. So I think that was our approach was building out a team that really worked well for us. We did relocate from Florida to where we live now, and I tried to find a doctor that was, you know, had said that he was, you know, there's specific websites of doctors that are more supportive of SCD. So I found him and the closest one was four hours away. And we met with him, and he was like, I'm confused. I can't be your GI doctor. I'm four hours away. Like, if your daughter's hospitalized, I can't be there. Like, why aren't you getting this a local one? And up to that point, he was very like blunt and kind of unsure of us. And then I just started crying on the call. And I was like, We've had a very hard time with some with some GI doctors not being even open to even talking to us about diet. And it's it's been very hard of like we we want to go, we want to know that the person we're working with is supportive of it. And I think he understood, but he still felt like you still need someone closer. So we did. We went with a conventional GI at the local hospital, and she was great. She really didn't know much about the SED, but she looked at my daughter's history and looked at my daughter in person and felt like, I can't tell you to change anything. You know, I may not understand exactly what you're doing. Doing, but it seems to be working. So I'm not going to disrupt you, but I'm here if you need me. And I think that, you know, like you said, like if your doctor or anyone on your care team is not, if you don't feel a connection with them, I think, you know, you owe it to yourself, right? To kind of, you know, you have that right to look elsewhere, try to find another care member that might be more receptive to you or have a better connection with.

SPEAKER_01 22:26

This is a question I should have asked you 15 minutes ago, but did you know anything about inflammatory bowel disease before your daughter was diagnosed? Like, do you have any family connections? Like, was this completely out of the blue?

SPEAKER_00 22:37

This was totally out of the blue. I I just I hadn't even, yeah, I it was totally out of the blue. And you know, yeah. And I'm an accountant and my husband works in privacy and compliance. Like we're nothing in the medical field. Yeah, so we had to do a lot of learning for sure.

SPEAKER_01 22:53

Yeah. It's hard to advocate for something you don't know. It's hard, I mean, like except for just to go in and say something's wrong, something's wrong, something's wrong. So that's a really steep learning curve.

SPEAKER_00 23:02

Yeah, it definitely was. I feel like we spend a lot of hours, a lot of lot of hours. And to the point where, you know, at times my husband even was like, I don't know, you're you're so fixated, you know, this this approach, but like this isn't what we're hearing from the doctors. Like, maybe, you know, you need to kind of, and I I felt in my gut, like, no, I just feel like there's something here that we need to explore more, even though the doctors aren't maybe as supportive of it. And then ultimately my husband felt the same way. It's just we were both so scared of like, I don't know what to do, right? We're I don't know what to do, but whatever we're doing now isn't working. So we've got to kind of turn it on its head and then flip it over again, and maybe something will fall out. So there's a lot of trial error.

SPEAKER_01 23:44

So difficult though. Absolutely. But but yeah, then it's so difficult when the trial and error has such dire consequences. You know, it's it's not just saying, do we try this new pizza crust recipe? It you know, it's your child's health. And so that's terribly, terribly scary. No wonder you have trauma attached to that. That's entirely unsurprising.

SPEAKER_00 24:01

Yeah.

Functional Testing And What It Shows

SPEAKER_01 24:02

Getting back to the functional medicine thing. So now that you've gone through training and what exactly when if somebody is thinking about functional medicine as something to add to their care team, why would they go, why would they do that?

SPEAKER_00 24:12

The way that I appreciate it is like stepping back and looking at the whole person and and every aspect of it and really trying to look down under the hood of, okay, is there something underlying that's causing this, or at least it partially that can be worked on at the root level and maybe not at a mass overall level of if there's imbalances in the body that could be causing different symptoms and really trying to understand what that could be with the diet that she's on. The focus is on, or the idea behind it is that if there's bacteria that have gotten into your system and kind of overgrown and gotten down into your layers of your intestines, for example, or the large intestine, and the diet tries to starve them out. My daughter, they found H. pylori in her biopsy for her colonoscopy, but it never showed up on a stool test or anything else. And so it made sense to me of like there's something going on deep inside of her that her body is reacting to, which is causing, you know, this massive inflammatory response. So I think the way that I think of functional medicine is to kind of dig deep into a lot of different areas to see what could be out of balance and then to try to help the body to kind of correct if possible in some of those ways.

SPEAKER_02 25:35

And you are certified in integrative medicine. So what is that?

SPEAKER_00 25:41

Similar idea of really looking at the doing functional lab testing to see or going off symptoms, but really like seeing what can be discovered as a possible root cause of things, potentially.

SPEAKER_01 25:55

So, as an example to maybe illustrate this a little bit, you mentioned that that your daughter did a stool test with the functional medicine person that you were working with, and that there was lots of information that came from that. What type of information was included in that? Like what were they testing for in that stool test?

SPEAKER_00 26:08

Like we were able to see basically all the different strands of bacteria, which of the good bacteria did she have or not have. In her case, she had no good bacteria, which of the like neutral bacteria did she have, and then which dysbiotic bacteria did she have? And she had a lot of dysbiotic bacteria and not a lot of good bacteria, which makes sense given what was going on in her body. But then it also will show, obviously, if there's blood, it'll show the different markers that we're used to, like the cow protectin, the lactoferin, different things like that, if there were parasites that came up on it, if there were yeast or candida or different things. It's pretty detailed. I was impressed with it because then we had kind of a roadmap of here's the things that are out of whack. This may or may not be what's causing the overall issue, right? But these are things that can clearly be improved upon, right? Like we don't want so much bad bacteria and we want the good, right? So we were able to target and then give her always trying to do food first above supplementation, right? Of what are some foods that could help with this? And then in her case, we did do some probiotics and different things that were able to target to what she what was showing up on the test. We just recently just ran another one with uh we're waiting for the results back now, but it's always interesting, I feel like, to see. I mean, any test you get done, right? I feel like it's more data to kind of guide you, right, of where maybe you need to look more.

SPEAKER_01 27:30

Again, kind of to cut Robin's comment about don't want to get too dark, but I am curious. Like when you have a child that's so little and all this stuff is happening to them and it's hard for them to understand, as your daughter was starting to go through all these medical treatments and having all this stuff done, and as she started to understand a little bit more, how did you explain all of this to her as she was starting to grow? Because I mean, she was she was frankly living a lot of her life in a hospital and and talking to doctors and all these tests and yada yada. So, how did you work with her to help her understand what was happening?

SPEAKER_00 28:00

Yeah, I feel like when she was really sick, she couldn't even talk yet. And in a way, we yeah, I don't, she really didn't understand as she's kind of gotten older. At first, even when we did the diet, I think we were at an advantage of implementing it to a child that didn't know any different. So we were able to be in full control, even now, right? At five, we're getting to that tipping point where we're not always in full control of what she eats, right? But where, you know, for the first couple of years of it, she was home with us. We took her out of school because she was so sick. And we were able to do it right in a way that she didn't know any different. I think we had to really talk to her a lot about it once she started. I guess when she started school and realized, like, oh, the kids aren't eating the same thing I am. The school that she started going to, they provided all the meals for the children, but you know, they had to adapt and they did an amazing job at adapting everything for her. So that's when she started to notice because at home, we my husband and I don't 100% follow her diet, but we for the most part, our dinner is something that we all eat together. We can all eat the dinner. You know, when she's at school, maybe I eat something that she can't eat, right? Like it's it's not a secret, but we do try to make the diet as universal as we can. But at school, she was realizing that. And she knew by that point, like when we go out to eat or when we go places, she would hear us give kind of the spiel to the waiter of like, hey, here's the things that we need to avoid. So she, I think just you know, kids are very observant, right? Even if they're not voicing it. So I think she she knew, and we we would talk to her about like, hey, do you remember being in the hospital or this and that? And I don't know how much she remembers or not. I unfortunately, I believe that your subconscious probably does remember it. So, you know, it's in there somewhere. But even now, when we go to GI, she'll say, Do I need to get a shot or do I need to get a needle like for the blood work? And we're like, Yes, probably today. But we try to tell her now it's every six months. She was getting blood work every week, like once a week. So, like every six months, like you are such a trooper. And I think she realizes, like, okay, yeah, I can do that. We actually found a book. I don't know who the art who the author is. It's a mom that whose child has UC, and she wrote a book. I think it's called Sophie Strong, and it's all about a little girl getting diagnosed with UC, going through testing, and then kind of how does she live her life? How do they incorporate healthy eating when she goes for her treatments, right? Like they she wrote a whole book about it and it was really cute. So we we have that and we've read it to her, and she understands, like, yeah, this little girl is like me, right? Like, there's lots of kids that are dealing with this too. I think she understands to that, you know, at a high level. And now she's in a place where we've been able to push the envelope with her diet of like we have introduced some things because I don't want her to have a very, I guess, difficult time in, you know, if she's in a social setting, she goes out to eat. I want her to be able to enjoy things if her body can handle it. And so far, her body is, you know, seeming to be able to handle it. So we talk about it a lot when we're at parties. We just were at a birthday party last month that was pretty much like Halloween candy themed. And the whole thing was all about Halloween candy and things that my daughter couldn't have. And so I had brought her treats that I made for her, but you know, there was no dispute, you know, of the fact she didn't know how to navigate it. These were new friends, new environments. She didn't know how to say, like, I can't have that, I can have this, right? So I think that's the next step is like in our home, in our family. She knows how how it goes. But when she's in a social situation on her own, right? And she's five. So, like, she, you know, any five-year-old has struggles with that. But I think that's our next kind of journey is like helping her to have that confidence. And hey, everyone, you know, we try to tell her you maybe you can't eat these things, but if you ask most kids, there's probably something they can't eat, right? And it might not be as severe as yours, but there's probably something else that then they are dealing with, right? That makes them unique, right? And so, you know, we need to just be aware of that, that we're all dealing with something, and it you may or may not be able to tell just by looking or talking to somebody.

SPEAKER_01 32:09

Yeah, I think that's an important thing. Just, I mean, even just teaching kids the empathy behind that.

SPEAKER_00 32:14

We actually went to a friend's house this weekend for football. They wanted to host and they wanted to provide all the food. And, you know, these are people that we've we we know, but this is the first time we've gone to their house, right? So it's always like, how do I bridge this conversation of like we s really much appreciate you wanting to cook for us, but I also don't want to show up at your house and then you find out that you know my daughter can't eat anything you made. So it's always like a balance of when is the socially like acceptable way to be like, hey, just so you know, we you know, we're happy to bring our own food, but this is kind of the situation. And what they were already planning to make was pretty much fine. We just had made some alterations to it, and then we volunteered to make a dessert because sometimes that makes it a little easier of like, hey, if we bring something, then you know, that's and you know, it just it did, but we actually made like a chocolate avocado pudding that's SCD legal and that well it's modified SCD because cocoa powder is like an add-on kind of like a modified ingredient, but my daughter does fine with it. So we made that, and then we crumpled up little chocolate cookies, the crackers, they're simple meals, so they're they're not a hundred percent SCD, but they are pretty close. And I made little gummy worms, and so it was super cute. The kids, the other kids loved it, like they had no idea that it was, you know, compliant with my daughter's diet, right? So it's rewarding in a way to to say, like, okay, yes, it does take more time than just picking something up off the shelf for sure. But we have made food prep and and coming up with new things like such a part of our family now that like we love it. Like it is there are some days where I'm like, oh, that's that birthday party this weekend. I have to make, you know, like I have to plan for it for sure. And it is challenging at times, absolutely, but it can work. And I feel like we're trying to give her those tools of like, it might be a little different, but you can still participate in whatever you want to. You just need to be mindful of how you do it.

SPEAKER_01 34:12

That's so tough though. I mean, we've talked about this on the show multiple times that so much of being social surrounds food. You know, it's going to a party and having food or going and having a meal with people, and that's hard to navigate for adults. And so I'm sure as a five-year-old, and especially with new friends, trying to navigate that has got to be really difficult. But you're right, so many kids have food issues now. Like there is just much more recognition. So it's I'm sure there's lots of families that are like, cool, got this. And as long as you can provide the instructions, that's that's super helpful.

SPEAKER_00 34:40

Yeah. And I feel like we've gotten confident with it. Of you know, there have been times when parents have said, well, it's okay, we we got a gluten-free, some like a gluten-free cake, like for her. I'm like, Well, she can't just have it. Gluten-free isn't gonna quite cut it. So, like, but like how it's so nice when people go out of their way to think of you. And then you still, you know, and my husband and I have gone back and forth of like, do we let her have it if it's one day and like we know, you know, we know that she's doing so well that like can she tolerate that for a day with her friends? Maybe. But at the same time, like I would much rather have an awkward conversation with a parent and know that my daughter's gonna, you know, feel better at the end of the day than, you know, bend to us, you know, because it's uncomfortable, right? To to not speak up. So I think we've gotten that down pretty good, but we did just move recently. And so I feel like we know we're still navigating that in our new community, but I can't imagine anyone that wouldn't be receptive. But we have had whenever I tell a parent or have a conversation, people are so accommodating, want to know what they can do to help. Like, how can we please bring stuff, put it in the fridge, we'll make room, we'll make sure that whatever you need us to do, we can do. And these are people that I maybe just met that morning, right? Like I hadn't even met them before, right? So I think that it's feels scarier sometimes than it actually, once you do it right, and then you keep doing it, you're like, you know what, this is okay, right? And it will be okay. And the most important thing is that we're not compromising what we value for her. And I hope she sees that, and over time, right, she'll build that confidence to know as well how to handle it.

Expanding Foods While Tracking Markers

SPEAKER_02 36:13

I was about to say I can't imagine, but that's a lie because I have two children who happen to be adults now, but you're also by deciding to allow her to have that cake or whatever it is, you're also making a decision that you know that she may be symptomatic from, right? So you're making a decision that you know could lead to her not feeling well. So it's hard as a parent to be like, yes, we want to give her that cake, but we are also doing a disservice to her by allowing her to have that one moment of right. Yeah.

SPEAKER_01 36:41

I know about SED and the basic tenets of it, but I'm curious, what's the off-ramp for this? Is there one? I mean, like as long as it's working for her, you want to stick to it. Is there an idea of like we're gonna do this for a certain amount of time and then try taking her off the diet or incorporating more and more non-compliant foods in to see how she does? What's the off-ramp?

SPEAKER_00 37:03

Traditionally, I think a lot of the people that I'm in some SED groups too on Facebook. I mean, and I don't want to speak for others, what I see a lot is people that basically, if they found it and it works for them, they will never veer from it, which I don't blame people. If you feel better than you did and you feel like this is why. For us, we have slowly tried to incorporate other things into it. Like I said, we've introduced like there's some modified ones that are like the first kind of these are ones people introduce if they're going to introduce other things. And we've been talking about are there some other things we want to introduce? We've gotten comfortable with if we're eating out, we try to eat at, you know, restaurants we know have higher quality foods, but we sometimes will let her have something that might have had a cross-contamination of something, but we we know that it's probably a very small amount and we know that she can handle it. And we're very, we try to be very selective about when we do that. For us, I do feel like we want to try to expand her diet as much as we can. I mean, I we've met with a dietitian actually last week through a new functional doctor that we're working so even though I have an integrative certification, we are still working with a functional MD in our local area because I am not an expert that's had years and years of experience and we, you know, want to rely on people that that we feel comfortable that can really, you know, do us service and give an unbiased third-party opinion, right? Because I see her every day. So there's things that I, you know, that that I am always open to help. So we met with a nutritionist that works on on this doctor's team, and she was very happy with the diversity of what our daughter's eating, but now we're kind of everything she eats is SCD legal or within reason close to it. But now it's like honing in on well, is she getting enough iron? Is she getting enough too much of this or too much of that? Because we've really been focusing on just making sure every item she eats is compliant, but not necessarily like, is she getting enough protein in her day? You know, so I feel like now we're at that next level where we're as a family looking, stepping back to be like, okay, what are the things she might need that like rice is one that sure she doesn't eat now, but could be a good, like starchy item that we could that could open up a lot for us as far as like gluten-free options. So we might try rice next because we want to see if we can expand it out more. I don't know that I have a like a path of yes, I want to do this or that, because I obviously the goal, the first and foremost, is making sure she keeps gr growing and thriving. But I personally feel like if we have a good handle on, you know, we we're doing stool testing every every six months to, you know, we're doing the testing we need to to make sure all of her inflammation is in check. Can we start to continue to push that envelope a bit, more or less to, you know, give her more diversity and make it a little, I guess, easier in some ways as she grows?

SPEAKER_02 40:00

I love that you mentioned that you're having the testing done. We had IBD dietitian Kim Braille on, and she is a champion of the SCD diet and working with kids. And she just talked about how important it is to keep checking the markers. Like it is, yeah, treat it like it is a treatment and not just we're gonna go on this diet and that's it. We don't have to check anything ever again. So it is being used as a medical therapy, and you should still check all of the inflamm inflammation markers that you would normally check.

SPEAKER_00 40:28

That's actually how I discovered your podcast is we worked with Kim. And so when I saw that she was a guest, I was like, oh my gosh, like it would remind me of, you know, she was great.

Documenting Symptoms And Advocating

SPEAKER_01 40:38

So I think what you said is also important. Like I think good that you said we have another doctor. While I'm trained in this, we have somebody else that's working for us to give that objectivity. Cause I mean, there's a reason that the medical community, like you're you, you're not supposed to treat your family members because again, you do you lose that objectivity. And so I think it's great that you're being mindful of that, but still using the knowledge that you have and that you've gained to be able to help guide conversations or to you know help your daughter in the ways that you can, but still having somebody that can be external to you to be like, hold on, let's let like let's go here and let's try this. Because I think that's that's gotta be so hard.

SPEAKER_00 41:11

I mean, yeah, and I like the idea of her or last GI wanted us to meet with a dietitian at that hospital, and then now we met with another one. And I'm always open and almost excited to meet, like I don't pretend that we have it all figured out, but I I always what is the saying? Like, I don't want to be the smartest person in any room. Like, I like I want to learn from other people and pull off their knowledge and their skills. So yeah, I think that's really important to kind of humble yourself in a way too. Of I have as a mom, right? Like, I do feel like, you know, my husband and I both had very strong feelings about like how we thought we would get her well and and really felt like we in a lot of ways you have to take your health into your own hands, right? Because I feel like if you just show up to the appointment and you know, you answer the questions and then you go home, like that doctor is with you for an hour out of your month, right? Even if you maybe see them monthly, but you're really the pr the one that has to own that, right?

SPEAKER_01 42:09

IBD does not allow people to be a passive consumer of healthcare, unfortunately. I think you are make a really, really good point. You have to come prepared, you have to come with your questions, you have to come with knowledge. And I think it's something our community does really well. A lot of the people, at least the people that we really talk to, are very clued in to what's happening and very proactive in how they're approaching their doctor's appointments and their healthcare. So I think that's it's cool to see. I mean, it really is cool to see as part of this community because they're just so educated. But I also think you have to be because you if you sit back, then you're not probably going to get what you need to stay well.

SPEAKER_00 42:45

Yeah. Yeah. We had notebooks of just every everything she ate, every bowel movement she had, what time it was. We had like a rating system of the level of, I mean, it's it's awful now, but the level of blood in the stool, was it a B1, a B2, a B three? Like it's it was, you know, but we that was like the one thing we could control. It's like I can document everything that's happening and I can show this to the doctor. I can, you know, refer to this, you know, years later. I still have the notebook in my desk. And every once in a while I'll open it. And then it's it's emotional, it's overwhelming to think back to where she was and and how hard it was. But like that was the one thing I could control. And then when I went to the doctor's appointment and they would say, Well, what did she eat last week? I'd say, Oh, let me show you, let me go through it and see, right? So I think that that is one thing that we really try to talk about a lot is like document. It may seem silly, but you're not going to remember how you felt or what you ate six months from now, right? Or two weeks from now, or maybe tomorrow, right? So, like just documenting that and having that is so crucial because also as you if you start to implement something that helps, or you start a new medication that helps, it's much easier to see your progress if you can have it documented where you started, right? To see, well, last week I had, you know, she had 12 bowel movements that day, but this week it was eight, right? Which is crazy that that's, you know, that was was the state of it, right? But that's I think that's how you can really track progress too is by having things documented. What a heartbreaking baby book that is. I mean I know, right? Yeah. Even now I still, you know, I mean I think most parents probably do that, but even now I'm like, let me just and and not even that. I like as weird as this probably sounds, but I think you'll understand, I like, you know, we'll be like, hey, make sure if you poop at school, like look at it, right? Just look at it and just like make sure that it looks okay. It one day she had we ate beets the day before or something. And then I think it freaked her out and she was like mom like she wanted me to come look because she knew something wasn't right. And I was like, oh honey remember we had beets yesterday like that's why like it's red like absolutely thank you and we will make sure we look at like the next you know few to make sure. So but yeah.

Moon And Co And Their Mission

SPEAKER_02 44:56

I ask my adult children and they aren't even the patients. I was the patient. But I'm still like I'm the I'm still like if they say anything about having I'm like okay I was the bathroom is a guest did you have blood? What's going on? Talking about bowel movements in my house is very common. Yes. We have been talking for an hour but we haven't really talked about moon and co tell us about moon and co and how it came to be yeah so moon is my daughter's middle name.

SPEAKER_00 45:23

So the idea of it's moon and co and the idea is really just to share our story and our experiences and and you know what we've learned through this to hopefully impact others in a positive way. Sharing not just from the medical side of what my daughter's been through, but also how we've kind of molded our life around it from a holistic point of view of trying to be aware of everything you're eating, putting in your body, putting on your body, you know, using in your house we we have a podcast that we talk about just tips and and different things just to help people be aware of and also to help take control of their health as well. And then we are both do offer our services I think really we've tried to really focus more on just we really want to educate and and not even just educate but just share our story and just hopefully impact others that are in similar situations.

SPEAKER_01 46:15

When I typed in Moon and Co it came up with a lot of weird stuff that's not you. So how would people find you if they did want to look at your or listen to your podcast or find information?

Final Advice And Community Hope

SPEAKER_00 46:24

So our social media is Moon and Co. So Moon and Co Wellness is our Instagram our website is moonmo.com I know there's a similar there's like a sometimes another thing will pop up that's not us, but if Moon and Co. And then it's the Moon and Co podcast too.

SPEAKER_02 46:45

It is time unfortunately for me to ask you the last question.

SPEAKER_00 46:49

So what is the one thing that you want the IBD community to know the biggest thing is like we've talked about a lot is just really knowing that you have the ability to ask the questions to seek other opinions to get a different care team if need be and all can be done in a very respectful professional way not taking anything personal but making sure that your wellness team whatever that looks like for you really feels like a team that you can rely upon. And I think kind of what I said at the end there is just having documented all the data you can get and give to your care team will help them as much as possible. And just knowing that there are lots of other people that are unfortunately going through similar situations, but finding that community and that support I think can make all the difference. I know it did in our in our situation some of those relationships that I built up either by sitting down next to someone in a doctor's office or finding someone and reaching out to them on the internet really did make big differences in our story.

SPEAKER_01 47:54

That's great advice and yes agree sometimes you don't know who the your uh your champions and friends are going to be necessarily all the time so being open to that is always good. But thank you so much Andrea it was so nice to talk to you and get to know your story your daughter's story and you know to learn more about your business. Thank you everybody else for listening and cheers everybody.

SPEAKER_00 48:14

Hi this is Andrea Potvin and if you enjoyed this episode please rate review subscribe and share with a friend