The Medical Detectives - Dana & Ivan's Story: Watching Your Child Disappear

Episode Date: September 24, 2025

When 16-year-old Ivan suddenly lost weight, slept through class, and found that eating hurt, doctors called it “disordered eating”—but Dana’s gut said something else. In this gripping, hopeful conversation, a midnight ER dash, blue lips, and a blaring heart monitor lead to the scan that changes everything. You’ll hear how bias can derail care, how distension pain hides in plain sight, and how one family kept pushing until the right tests—and treatment—brought Ivan back.Join the conversation! Have a medical mystery or story of your own? Send it to [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Hi, Dana and Ivan. Welcome to the medical detectives podcast. We're so happy to have you both with us. Thank you. Thank you. So this is actually our first episode with not one, but two guests. So welcome to a learning opportunity for everyone involved. And we're game. We are so game. Let's do it. Well, Dana and Ivan, I'm going to let you two kind of introduce yourselves to our audience and your relationship to one another. Sounds good. So my name is Dana. My child is Ivan. I've been a mom now for 16 years going on 17. And it's definitely been a really fun experience until recently when things kind of went crazy. Well, Dana, could you describe for us what Ivan was. like as a child? Ivan was in fits and spurts, an easy child. There have been some times that were very, very difficult because beyond what we're going to talk about today, Ivan actually does have some other things that we've had to overcome when Ivan was younger. But Ivan has always

been a delightful person, though, super, super smart, very, very well-spoken. very, very single-minded. It's so funny, smart-allicky, sarcastic, really just a delight to be around. So we have a lot of fun together. Ivan, since we're here talking about the medical mystery, can you talk about the moment when you felt like something just wasn't right? It was when I showed my friends an outfit and they were like, wow, you got really thin. I'm like, really? And I went to go away myself. I was like, damn, I lost 30 pounds. Well, and what was really weird, too, leading up to this time, Ivan has a extremely broad palate. We'll try anything, any food, not a picky eater at all.

And I would make terrible dishes, and I'd make good dishes. And Ivan was always like, Yeah, this is good. Yeah, yeah. And really trying it. So last year, kind of picking back up, Ivan, where you were at, it was, it started to get weird like that. It was weird because I didn't really even notice that I wasn't eating. I just wasn't. It wasn't like a conscious act. I just wasn't. Would you be doing something else and just forget to eat? eat or like you had no drive to eat? I just wouldn't have a drive to eat. Yeah, like during school, I would just eat lunch. But then I wouldn't eat dinner and then I wouldn't eat breakfast. And then my lunch at school would get smaller and smaller and smaller until I would eat like a bento box of food, but it was only half of that. So it's like not that much food. And that's the whole day. And were you doing family dinners or were you,

mostly responsible for your own food. I do my own breakfast and lunch, but then my mom or dad makes me there. And we would make dinner, and sometimes Ivan would just take a plate of food and go up to their bedroom. We wouldn't always sit together and eat as a family. So Ivan would go up to their bedroom and eat and then bring the plate back down. And so there was this period of time when the plates stopped coming down, and I'd go upstairs and I'd find them, and they're full of food still.

And I'm like, didn't you like this? You loved it last time. Oh, yeah, it was really good. I just, I just wasn't hungry. I just couldn't eat. And it was like, oh, okay. Okay. What did you think about this, mom? Well, I really will say that I honestly thought maybe it was just like a gross bird or something was happening, like an opposite sort of, you know, because when you have a gross spurt, you eat a ton of food. And Ivan was getting close to turning 16. So I thought, well, maybe something is going on hormonally, right? And so I just kind of was like, well, it's, it's okay. I know that Ivan's eating at school because Ivan told me they ate at school. But I wasn't noticing any physical changes because Ivan was wearing these sweatshirts like 2xL and XL and sweatpants that are extra large and a t-shirt underneath. And so I couldn't see Ivan's body. So I didn't see this evolution of change in the body at all. So I was paying attention to it, but I'm also pretty busy. So I wasn't because there had never been a reason to worry about it before. Ivan was always a good eater. So I just thought, oh, this plate here,

it's full, but the next one, it's going to get eaten. I'm not worried kind of thing. And Ivan, And then after your friends pointed out that you looked so much thinner, did that alarm you? Did that, you know, what was your response to it? I think it was kind of not the spark of me thinking something was wrong, but I think it might have been because after that, I'd weigh myself more. And I'm like, why am I dropping more weight? Okay. Yeah. So one day I walked into Ivan's bedroom and Ivan was changing and I could not believe what I was seeing.

I could see every rib bone all the way down Ivan's back. So went from being this healthy kid to just a skeleton before my eyes that this happened because the last time I'd seen Ivan with a shirt off and without something big and bulky was probably over the summer. So it's probably been four or five months. And that was so shocking to me. Because I'd noticed Ivan's legs were getting a little bit thinner. But that was only because every once while Ivan would come down with shorts on instead of big bulky pants. And I thought, gosh, your legs are getting thin. You feel smaller when I'm grabbing you. But I really didn't notice that there was this unbelievable. Shocking difference until that one day I opened the bedroom door and I'm like and just completely alarmed. And also during this time, my mother is dying of lung cancer. So I'm very distracted mentally by the fact that mom has started chemo again and radiation treatments. We're on our second round. She was diagnosed last year. And so that threw me off too. I was very distracted from Ivan because of that going on with mom.

And Ivan, typically when someone undergoes a drastic loss of weight, there are other physical symptoms that happen. Hair loss, bowel changes. Did you notice any other physical issues? Those two were the most prominent. Like, I can even remember my record of not. being able to go to the bathroom, which was three weeks almost, which is insane. And in a whole span of one day, I would sleep like 14 hours. I would go to bed really early

or like earlier than my normal and then wake up like when I had to leave. And then I would sleep in almost every single class. And those classes are like 45 minutes long. So I would sleep in math, I would even sleep in science. I would sleep anywhere I could. I even slept on the floor in school at one point. I was just so tired. At what point were you like, maybe something's wrong? Like how many days of sleeping in class went on before you were like? The only thing, like, I really didn't get alarmed. because I don't really get alarmed by most things. I'm just like, oh, it's going to pass.

And, Ivan, did you talk to your mom about the issues with going to the bathroom at all? Oh, she knew. She was in it. Like, I would be like, Mom, it's been two weeks. Yeah, and I didn't know what to do at that time because we hadn't gotten to the phase of going to the doctor yet. And so I was just giving some over-the-counter stuff. that I thought would help to loosen the bowels up and sometimes it would work, but when it did, Ivan was in so much extreme pain that Ivan didn't want to go again because of the fear of the pain

to go along with it. So Ivan's dad and I are divorced, but we are very close co-parents. And so we are talking about this all the time, like, what's going on? Ivan's lost Wade. Let's start. watching how much food Ivan is eating. And so we started calculating out the caloric count for the day, essentially, how much water and how much food. And we started realizing that Ivan maybe was consuming about 500 calories a day. And so when we started seeing that along with the inability to be able to go to the bathroom, we were like, oh my God, there's something. And so we finally did get into the pediatrician. So the pediatrician was not the same one that we'd been seeing for many years because that one retired. Of course, that's the way it always works, right? And so the new pediatrician

that we had, she was very young. She was probably just recently out of school and on her own. So we do blood draws. And the blood draws come back with zero inflammation, but absolute signs of all of the levels in your body being low, that you are in a starvation space. So she said that definitely there are signs of malnutrition. Your iron count is low. We need to get that up. Your vitamin D is low because, hey, it's wintertime. We need to get that up.

There were a number of things that she was concerned about. But the big thing was there were zero inflammatory markers in any of the blood work that was taken. And so the doctor said, well, let's see if we can combat things by doing some, we're going to do some Miralax to see if we can get some things moving along a little bit. And I want you to take iron and calcium and vitamin D and

something else so that the iron and the vitamin D could uptake better and you take them at different times a day because they counter each other. So we had this cycle of, okay, you take these in the morning and you take these at night and then you take the Merrillax and then you do this and then we're scheduled to

go back and get some more blood draws. And so we do some more blood draws and they're like, Well, it looks like things are getting a little bit better. We see some signs that some stuff is going up, but nothing is getting really, really good. And the malnutrition markers are still there. So we continue to try. We continue to try to eat. But now Ivan's starting to throw up.

Like if Ivan eats too much, there was one day that Ivan had some toast, salmon, and a little bit of cream cheese and we got into the car and we were driving along. It's probably been 35, 40 minutes since I've ate and we're driving down the road and I've been starting to act weird next to me and behaving strangely and is like I'm, I don't feel good. I feel like I need to throw up. I feel like and we're going down the highway at like 75 miles an hour. So grabbed, grabbed a bag that I had and Ivan's just throwing up all over the place in the van, all over in this bag while we're driving down the highway and just was feeling just atrocious, absolutely atrocious. And this wasn't the last time that Ivan threw up either

with pain. And it really was, now, now I realize that it was the pain that was so bad that it was causing Ivan to throw up. So what was wording specifically? Specifically what was hurting? I don't know. I think it was just kind of just a lot of pain in my stomach. Because it's normally like exactly where your stomach is, like where then your intestines meat.

That's where it normally is for any type of pain that I had like ongoing from then. And it is, it's, it hurts. Yeah. So we're scheduled for another appointment with the pediatrician to have another blood draw. And again, there are no markers of any kind of inflammation at all. It is all just malnutrition. But I've got this kid that is in extreme, extreme pain, cannot go to the bathroom, is only eating 500 calories a day.

Used to be an amazing eater. Would eat anything you put in front and absolutely everything that you put in front? Would stay up till 2 in the morning is not going to bed at 9.30. Falling asleep at the kitchen table with food still on the table. Just lay their head next to their plate and go to sleep. So question, I'm in. Was the pain constant or was it like a low-grade pain that would peak when you ate? Like, how did that feel?

It was weird because sometimes your body is just like, we're not going to digest right now. And then it starts to digest later. So the pain was literally random throughout the whole day. So I couldn't pinpoint what was making me hurt. But I knew I was like, if I eat, it hurts. So if I don't eat, it doesn't hurt. But if I don't eat, I get hurt because I don't.

don't eat. So I eat. And it's just terrible cycle. I didn't really know what to do because I was just like, I'm just going to get to the next day. I'm just so tired. Let's just get to the next day. So I didn't even think about what I should even do to help myself. I was just, just get to the next day. Just get to the next day. So we finally go to the pediatrician again. We're still seeing the fact that there's the malnutrition markers, the levels of iron and vitamin D, they're not raising up because Ivan just cannot consume the vitamins to get us to that point. And so finally, the pediatrician says that we're diagnosing Ivan with disordered eating. And I'm like, okay, well, this is something. This is something, right? It's a diagnosis. It's a diagnosis. Okay. So we'll give this a

but I'm not feeling really good about it. You know, it feels weird. And I'm like, okay, could we do a test? Is there any kind of other testing that we can do? Can we do a full body scan? Because my mom's over here, you know, she's saying, well, do you want to do a CT scan? I'll pay for a CT scan out of pocket. I'll do all these kinds of things.

What do you want to do? And I'm like, no, let's, we're going to follow what the pediatrician is saying. And the pediatrician has said that it is disorder to eat. So let's kind of explore this, even though in the back of my mind, I'm like, this just feels so weird, but okay, because the pediatrician has said, well, sometimes when you haven't eaten for a while and then you start to eat, it can be painful when you start to eat again. And we're like, okay. Is it like eyes long? I guess. And so she gives us the name of a disordered eating clinic.

And I call the disordered eating clinic and I said, okay, I've got this. 16-year-old child, and we've got a referral to you. How much is it to go to this clinic? And they said, well, it's something like $5,000, all out of pocket. Insurance does not cover it. And I'm like, oh, my God. Oh, no. That is, that is impossible. And so I said, okay, how does the program work? Well, you go in, it's a four-day-a-week program. You go in and you talk about eating. And then you make food together the next day, and then you talk about eating, and then you get food catered in. And then you do that again, rinse and repeat, four days a week, every day, for something like five, five weeks. You do this at $5,000 for a five-week program.

So I said, okay, so what is the doctor's engagement then? Like, how are they monitoring? Like, what kind of blood tests are you taking and what kind of one-on-one therapy? Are you doing? Is there any kind of therapeutics that are going along? Well, we have a dietitian, and the dietitian gives you different foods to eat. And I'm like, okay, but where's the doctor involved? Well, you just need to go to your pediatrician and have blood work drawn. And I'm like, this doesn't make any sense. This sounds like we're just going to sit around and talk about eating with somebody who is struggling to eat. And there's other things going on. It just, it didn't, it didn't make any sense at all. And so I went back to the pediatrician. I said, I can't do this eating disorder clinic that you've recommended to me because, first, I can't afford it. This is ridiculous. $5,000. I can't. There has to be something else that insurance will cover. She said, well, we can get you into the children's hospital that's here. And I said, okay, do they have a disordered eating clinic there? Yes, they do. Okay. How do we get in to see them? She goes, well, I can do a referral there and they give us a referral finally. And it takes a while to get in. You know, there's a waiting period because within the disordered eating space, they're very busy. So Dan, Borna, I just want to interject for one second.

When the pediatrician first brought up this term, disordered eating, did she talk about it in terms of a psychiatric illness? No. Didn't. No. No. How did she explain what disordered eating was as a diagnosis? Kind of explained it more of as a physical illness and not as something mental. So at this point, she's thinking that it is still a physical problem.

Sort of. But I think that she didn't know what to do. She took all the pieces and put them in the bucket and shook them up and out came disordered eating because we've got somebody who can't eat very much, isn't drinking very much, has stomach pain when eating. And when you just look at that, the only conclusion she could come to was disordered eating. Yeah, I mean, I would kind of think of it in terms of typically you would diagnose someone, you would say a primary eating disorder, which is considered a psychiatric illness versus a secondary disorder of eating due to a physical problem, which is what

sounds like they thought was your issue. But again, it's secondary to the thing. And so you can't change the disordered eating unless you solve the primary problem. So it doesn't seem like whatever they were asking you to do had anything to do with solving the primary problem. Nothing at all. And of course, we didn't discover that until later. Because Ivan's dad and I are just going into this that this pediatrician should know, but both of us, our gut was telling us, this didn't make any sense. Because it just didn't track with who Ivan was six months ago. It just didn't look like. like the same person, this thing that they were describing. And even the way you're talking about food is more that it's uncomfortable and non-enjoyable, which is a very different perspective than food is bad. Yeah, because I'm like, food delicious. Give me a plate now. I'm like, back then,

I was just like, food tastes great, but why is it making me hurt? It's not supposed to do that. why? Like that's kind of what I was thinking. So we finally get into do an intro with the Disordered Eating Clinic. And this is a short one where Ivan and I meet together with the doctor and then Ivan is taken away and I meet with the doctor separately. And during this whole this whole thing, there is a lot of times where because of Ivan's age, the doctors are like, okay mom and dad you've got to leave and we're going to talk to ivan alone so there are some individual conversations that the physicians are having because this is the point at which ivan needs to start learning on how do you have this kind of interaction with with doctors alone

and the doctors do force that they are very very much we need and i know that some of it too is are you being abused are you being treated in a manner yeah they're like have do you want to do this to yourself. Have you felt this in the last two weeks? I'm like, no, no, no. Do you feel safe? Yeah. I'm putting, bro. So we finally get into the Disordered Eating Clinic to do this initial appointment to go then for the next one, because the next appointment will be five hours long. It's like half a day, you're getting really in depth with things. And so we get in to meet the doctor. They meet with Ivan. They meet with me. We meet together, and during my conversation with the doctor, I said, okay, I get that we're going down this path of disordered eating.

And I feel like we can continue down this path, but I think that we need to have another train running in parallel to this because we've got disordered eating down. We can figure that out, but there is something else that is happening. Can we please, please, can we do some other tests? So she had us do some more blood work and finally came up with some inflammatory markers. right? And they said, okay, so this allows us now to, of course, insurance dictates everything, right? We can now get a scan. So we can do an abdominal sonogram. And I'm like, oh, this is great. This is fantastic. This is the first time we're going to have done a scan since last year when things started going. So we're probably February kind of timeframe, you know, early, early February-ish that we're in. And so we finally get a scan scheduled, and we have that scan scheduled for the same day that we're going to go to the big, long appointment at the Disordered Eating Clinic. And so we're really excited that we're going to be able to do all of this.

And during this time, Ivan is definitely appearing to be worse and worse and worse. And Ivan's talking about at school, I was in the library. and the heart was just racing. It was going so fast. It was just racing and racing and racing. And I remember being, oh, you're going to be okay. Your heart rate was probably just up because you were doing something, right? It was, it was nothing.

And I was about 30 minutes away. It was late in the day. And Ivan called me up and was crying on the phone because they were in so much pain. and their heart was racing. And I was like, really? It's like you're just sitting at the table and your heart is racing and you're in pain. And Ivan said, yes, it's really, really bad. I was literally like having tunnel vision.

And so I said, well, do you need me to come back? And Ivan's like, yes, I'd really like to you to come back. I said, okay. So I left what I was doing and I drove home and I stayed on the phone with Ivan the whole time home. And throughout the conversation, on the ride. Ivan's crying and is telling me, I'm glad you're coming home, you know, that kind of stuff. Did I call 911? Yeah. Ivan was wondering, should I, should I call 911? You're not home yet. Should I call? And I get home from that car ride home and I see Ivan's face and Ivan's

lips are so blue. Aaron, they were like the color of your shirt. They were so blue. So I walk in the door and look at Ivan and Ivan's looking weird and I grab Ivan's wrist and I literally cannot feel a space between heartbeats. It's going so fast that I can't tell that there's a difference. And I remember thinking, is this bad enough that we need to go to the hospital? Should we go to the hospital? I don't know. Is this bad enough? Will this just stop? Like, what is this kind of thing? And I finally decide like, okay, we're just, we're just going to go. And I send Ivan's data message. We're leaving. We're going to the hospital right now. And we get in there. We walk into the emergency room. And the nurse takes one look at Ivan and is like, oh, is Ivan usually this trail? And starts doing vitals over the counter while they're checking us in. And they hustled us right into one of the rooms back there and immediately started taking. making vitals again. And this time they've put a monitor on and you're on a machine and you can see everything and the alarms are going off. They're just like going crazy because now

I can see that her, her heartbeat is at 150 beats a minute. And it, the, the machine is screaming that we're in, this person might be having a heart attack. We're in, no, we're, Ivan's in tachycardia. And they really did think that there was a, a good possibility that Ivan was having a heart attack right at that moment in time. So they took blood, but unfortunately, the hospital that we're at, there are multiple branches of it around Kansas City. And this one did not have the testing facilities to be able to run the labs to see, do we have the markers for a heart attack? So they take the blood. I know. I know. It sounds weird. It sounds weird, but they're small hospitals. It's just like a tiny hospital. It's

not that bit. It's a small children's hospital, but every, every hospital has that, that, that is, that's no sense that an emergency room would not be able to run a tropon. Yeah. That is, that is not. I know. So they took blood work and they gave it to a courier who rushed it over to the hospital that actually had the ability to do the testing. So while they're waiting for that test to go back, we go into a, a room and they start giving Ivan, Ivy. fluids. And so Ivan is getting the IV fluids. And every time Ivan would stand back up, heart rate would skyrocket, lay back down. Heart rate would come down to about 120. Stand back up. It would skyrocket, go into tech party again. Lay down. I would literally, I would look up at it and be like, shut up. I'm just standing. Yeah, right? I did that so many times. I'm like, shut up. I just need a bathroom, bro. Yeah. Be quiet. I know. So, they give Ivan a whole bag, big, huge bag of saline. Nice one liter. Yeah, a whole liter of saline. And they finally get the results back of the blood work. And the blood work says, no, it is not a heart

attack. You're okay. What it turned out to be is because remember we were talking earlier about not being able to go to the bathroom and not being able to eat or drink. Ivan was so dehydrated that their heart was trying to work to move the blood. Ivan's lips were. blue because they were oxygen deprived because the blood was sluggish in the body because there wasn't any liquid in between your, your little, there literally wasn't enough water in my blood. Yeah. So literally suffocating, Alma. Yes. Suffocating in front of us. So. Very slowly. I know it. It's so crazy. So, so then they give another full bag of saline. And it took two liters of saline for Ivan. It did be to a normal.

Normal-ish level again. Yeah. To get to a normal. Yeah. The doctor is so cool. She gave me goldfish and two light blue glitter. Yes. My favorite.

Ivan's excitement was getting the food. My excitement was seeing the blood. Working better. Heck yeah. Apple sauce. I'm just going to say your enthusiasm for applesauce and goldfish, pretty good indicator that this is just not disordered eating because you don't want to eat. Right.

Right. If you're like, hell yeah, goldfish. Yeah. Yeah. So we get home from this. And it was so weird because it was so anticlimactic, you know, you're going in and you have all these alarms going off and you get two liters of liquid and they know that we are going in and we're getting an abdominal sonogram and they know we're going to go see the

Disordered Eating Clinic and they say you don't have a heart attack. So, okay, sounds like you're taking the right path. There's nothing that we can do for you right now because you're doing things already. Okay. All right. So we get over to the Disordered Eating Clinic and we're meeting with the doctor and the doctor has given us the okay to get the abdominal sonogram. We get it at like 7 a.m. And our meeting with the Disordered Eating Clinic is at something like 8 o'clock in the morning or 8.30.

So we go from one to the other, right? So we go and we're sitting in the waiting room and they bring us in. And the doctor says to me, mom, can you come back first? Let's have a conversation. Now, keeping in mind, this disordered clinic day is like a five hour day. We're supposed to be spending the whole day there. We've taken the day off from school. We know this is going to be a big deal. It's, you know, it's going to get wild and hairy. So we go into the disordered eating clinic. And, And the doctor pulls me aside and she says, you know, since we had that test this morning and we don't have results for it yet, I don't think it's a very good idea for us to go ahead with this appointment that we have. And I just burst into tears. I was like, I can't imagine us not doing this appointment. I am so desperate because now I'm to a point where my mother is 100% dying over here. My child is 100% percent. dying over here. We've gone through tachycardia. Weight loss is still happening. I've seen my child is just like a skin bone person. There's like no tired. I just always just want to lay down. Sleeping all the time. I am terrified. The doctor is saying, well, you know, maybe we shouldn't do this appointment today. And I'm like, no. Oh my God, no. Oh my God. We are absolutely doing this appointment today. I'm in tears. And so the doctor finally said, okay, we'll go ahead and do it. And you

could see in her eyes that she was like, this is a lost cause because we don't have the test back, but okay, we'll just, whatever, mom. I mean, that's literally how it felt. So I went into one room and met with one person. And Ivan went into another room and met with another person. And I went through all of my thoughts. So Ivan, do you want to talk about kind of how your meeting went? For the meeting that I had, basically it was like a therapy kind of layout. She would just ask me about food and stuff. And she, like, even she told me, she was like, it doesn't sound like you have an eating disorder. I'm like, that's what I think too. I don't think I have one, but my friends say I might. Like, do you know? Like, maybe.

Christian says you might. It's like maybe, but I don't think I do. Like, even I'm like, I don't because I've done research and stuff. I'm like, that don't sound like what I have. Yeah. And so during your meeting with the doctor, though, what happened? Oh, she was like, we got the test results back. Yeah.

Literally in that. And it was like, it's gothastodes. Yeah. And we were all like so happy. We were like, finally, something. Oh, my God. So we can get more tests. Right.

This makes sense. Like gallstones cause pain, all of these things. Oh, my God. This is fantastic. This is the best news. We have a diagnosis that makes sense. We have a thing. Finally.

Right. But this is not the end. So we're so excited. We get done with our meetings. They've given us the gallstones. We've got an appointment on Thursday to go meet with the surgeon because we're just going to get that gall bladder out. We're just going to fix it, right? And we're going to start eating again.

It's going to be great. So we get done with our doctor's appointment. We did a few more errands because, you know, why not? We've got the day off from school. Yeah, we're celebrating. We're celebrating. And after we get our errands done and we go and we're like, you know what? You know what's gallstones now?

We're going to have a good dinner. It's going to be awesome. And we went and had Greek food. I even had this delicious. Mind of my. Oh, Greek food. Moki was kind of worth it. That Greek food is so good.

Oh, my God. We were so excited. It was the best day, you know? So we're eating our food and we're so excited. And then there's cucumbers in there and there's yogurt in there. And we're just like, this is going to be amazing, right? And so we have dinner and we get home and go to bed. go to bed and I wake up at three in the morning delirious as hell and in the like scale one to ten how

how much pain are you at oh can I put in 13 million down oh my god I was like hunched over I crawled over like almost crawled over to my mom's room I'm like mom can you please some some pain men's please I hurt yeah yeah I'll do it in a minute and then she got up got the meds uh came to my room and then I was just sitting there, whining, basically. Like, I was, absolutely doubled over in pain. Yeah, absolutely in pain. I was literally rocking back and forth on my bed, trying to find a comfortable position to lay back down and go to bed in. No, no, no, no. And so my mom was like, um, should we part of the hospital?

Face is ashen again, looking terrible. This time, though, we go to the big hospital. We pass that other littler one. We go to the big one. So, we get in and we walk into the emergency room and Ivan almost immediately starts throwing up right there in the waiting room of the emergency room. No, not almost. I was sitting in the waiting room in the chair. I was just like my chest to my knees. Yeah. Just sitting there hunched over. I'm just like, I'm so tired. My chest hurts. My stomach hurts. My body hurts. Please help me. And they came up to me and they said, are you okay with us giving some pain medication? And I said, absolutely, absolutely, because Ivan was just withering with the pain. And this was the first time I had seen Ivan without any pain in a very, very long time. So the good thing about being in the emergency room is that what I didn't realize is when you go to the emergency room, they pretty much. Tevkarp launch to do whatever they need. There are no longer these prerequisites required. There are no longer rules that you have to follow. You can test whatever you need to test because

you're in an emergency situation and you can follow back up with the insurance later kind of situation. So that was such a blessing because once they kind of had everything and they got together and they chatted amongst themselves, the different doctors chatted amongst themselves to figure out what's going on. They knew that we had already been diagnosed with Gullston. but this was not, this didn't make sense. This didn't make sense with gallstones. We knew that you'd been diagnosed with a disordered eating, but this doesn't make sense either.

Because when I told them where the pain was, they were like, that's not where your gallbladder is. It should be in a different place. Yeah. Yeah. Let's take a look at that. Right. So first, it's an abdominal sonogram with your bladder full.

And then it's an abdominal sonogram with your bladder empty. And we're looking at your ovaries to see, do we have an ovarian torsion? Do we have something else that twisted? Is there? Because this intense pain, but we already know about the gall, you know, like, what's going on? So they take all the sonograms. They look at the sonograms and they come back and they say, okay, we can definitely see the gallstones. But there's nothing in the tract going from.

There's nothing there. It doesn't. Yeah. So a gall stone on its own is not a necessarily painful condition. The painful condition is colostisitis. It is the inflammation of the gallbladder or the gallbladder as it enters the small intestine. Now, sometimes a stone can get lodged in the little tube that enters and it blocks the fluid that the bile that's supposed to be going into the small intestine. And that's typically what causes the. colostitis, but just a stone sitting in the middle of the gall bladder, which is a sack, typically is not a reason to have pain. Yeah. And there's no signs of anything at all. So they decide finally that we're going to do a CT scan. I'm like, oh, hallelujah. Thank you. Thank you. We're going to get a good scan done. Finally. But unfortunately, you have to drink a ton of stuff. A ton It tastes so bad.

It tastes like I'm drinking for a highlighter look. Like, that's how it does highlight you, right? Yeah. Yeah. So finally gets all the juice in the system and we're ready to go get the CT scan. So Ivan now hasn't eaten since about 4 o'clock in the afternoon. It's about 5 a.m. now. So we're about 24 hours into having thrown up, no food.

No, nothing. 12 hours. 12 hours, yes, 12 hours. The only thing that Ivan has consumed is the wonderful juice for the CT scan. And they take us back to our giant emergency room suite. And there's a doctor that comes in. I think was there two or three doctors there? It was, I think, two.

But one of them was like, not a trainee, but younger. And she was explaining everything to us. And she was like, so. your intestines, they're backed up and inflamed. Well, yes, but the way that they presented it was scary. So scary for me. I don't think that I've been really realized how scary this was. I was paying attention.

I was on my phone, kind of. I'm just like. Right. Because in my mind, you know, keeping in mind, over here my mother is dying of cancer, right? Over here, my child is dying of something else. And so they're like, everything looks good. and they're doing that zoomed-in image. Everything looks good until you get to here.

And then here, you see the intestine, everything, just a narrow line and an opening in the intestine, a narrow line. And they say here, and it's this all of a sudden a big black line that's as wide as the tract of the intestine are both of the walls of the intestine. All of this. And she's like, this is all something that we don't know what this is. and it's this huge chunk of the intestine. It's like a whole large intestine, basically. Well, it was of. Or a lot of it.

Yeah, I don't know how long or even where, but it's this enormous portion that has this thick, wide, black band around the intestine. And I couldn't even look at Ivan. I had to hide behind my ex-husband. I stood there looking at the screen while they're talking about this. And I couldn't even look at Ivan because all I could think of was, oh, my God, this is actually intestinal cancer. That's what this is.

This is intestinal cancer. And my mom is dying over here of cancer of the lungs and now the brain. It's metastasized throughout her body. And I'm going to lose my child of cancer now. I was floored, absolutely floored. And I can still see the screen in my head and I can feel myself hiding behind my ex-husband and not able to look. I remember that. I'm just like, can you go through it again?

It kind of looks cool. Yeah. Ivan's like, oh, no big deal. And I'm like, oh, this technology. I look sick with that. Can you do that again? Yeah. Oh, my gosh.

The gravity of the situation was not there. So then they said, okay, here's the other part. Ivan is backed up almost all the way to the ribcage. The entire intestinal tract is completely full all the way to just underneath the ribcage. We cannot do any other tests until we can get this cleared out. And so they're like, we're admitting you. I have to say it because it's right there. But Ivan, you were literally full of shit.

I know. I wonder what. Yes. And just like in a little anatomy primer for people, if you can think of your abdomen almost like a box and the small intestine, which is the thinner tubes, is kind of like the area inside the box. And the large intestine is like the perimeter of the box. So people may not understand that when the large intestine, which is the big tube, is backed up. That means that all of the inside, right, that ball intestine is what goes all the way up to the top under the car. So that means the backup was like probably we're talking about multiple

feet. Yes. And it's so, it's so explained why Ivan was throwing up. I mean, there was nowhere for the food to go. It had to come out. It had to come out. Yeah. And another thing just to note, there is a type of pain, which is so difficult to describe, but it is so painful. And that is distension pain. And I think, Ivan, this is probably what you were probably experiencing, but it's different from like, oh, I just cut myself type pain or like, oh, it feels really, you know, like swollen or that. It is a pain that is so uncomfortable. What's crazy about this pain, too, is, and we didn't find this out till later, neither Advil or Tylenol affect this kind of pain. Correct, because it's distension pain.

It is a different type of pain fiber than if you were to have a cut. And you might have felt this at any time, if you've had a really difficult time, go to the bathroom and just can't get it out. And then also when you are able to finally pass that and you feel that relief, it's because it's a relief of the distension pain. Yeah. And so that's why those, that traditional pain wouldn't, wouldn't affect it because it wasn't the right pain fiber. Yeah.

So we got admitted and the first night there, nothing too much happened, got into my room, yada, yada, yada, yeah. The next day. Well, wait, it was 6 a.m. So we went into the hospital at like 3.30 to 3.30 in the morning, 6. No food. Yeah. And I, Ivan's in the room and I leave the room. Ivan's dad is in there.

So pick it up that I am gone. I am not in the room at that moment. She's not there yet. She's not back at least. So the nurses were like, hey, we have to give you this thing called an NG2. Because we need to get you some go lightly. Yeah, we need to get you flushed out because you're going to have a colonoscopy and end I'm like, oh, okay.

They told me to sit on my hands because so many people rick it out of their face immediately. And I was like, oh, I'm not going to do that. I was about to do that. Oh, my God. What they do, they hold your head and neck still. And you're supposed to be like sitting up and kind of back so it's straight down. And they measure from your nose to your stomach. And then what they do, they lube up the end a little bit.

And they're like, okay, down your hands. And don't forget to breathe and swallow. And then they just shoved up your nose as fast as they could physically do it until it goes down and hits your stomach. Yeah. And then they tape it all mice against your cheek. And they're like, okay, here's a little sticker. We're going to get you some fluid.

What's fun with that for the next three days. Oh, and by the way, with this, you can't eat. No. Excuse me? and so for three days three days I couldn't eat so this was like four whole days last meal I had was on Monday the next meal I had was on Friday yeah like I couldn't eat anything and during that time they gave Ivan five liters of go lightly to flesh up the intestine yeah and an average is two yeah so yeah That was backed up. Did it work? It did.

It worked. It came out. I mean, I was a warsel. Not well, sort of. So, finally on the third day there, Ivan was enough flushed out that they felt like they could go in and do colonoscopy. So if they go in, we see Ivan off into the surgical suite where they're going to do the colonoscopy and the endoscopy. And during that time, they're going to put in. a patency tablet. So the patency tablet is this little thing that they put in your body

to see if something can pass through your intestine because the next step is to do a little camera. So they put in the patency tablet and they've taken the biopsy. Now, keeping in mind, this is a Friday at this point in time. So there is no way we're getting any test results until Monday of the following week, right? And so Ivan is super excited. And so Ivan is super excited. We go get some food. Ivan actually eats. There isn't any pain because finally, the stomach is cleared out. The intestine is cleared out.

At the end of this, like the thing, mind you, at the beginning of this, I was 160 pounds. Now I was easily 105, 110 if we're pushing it. Yeah. I lost a doinkilous amount of. And Ivan's only 5'2. So. Yeah. I'm short.

Tiny. I'm 5.3. Okay, 5. I'm prudage. 5-3. 5-4 with shoes on. And so they let us go that day from the hospital knowing that we're going to get the test results back after the weekend. So we finally get the test results on Monday.

And they said, okay, you have the granulomas for Crohn's. It's like, finally an actual diagnosis. Like, real honest to God. And so that was after all this time. So on 5-1 of this year, there is the actual true diagnosis of having Crohn's, which it felt like the best day ever going from. And then after we did like so many medications and stuff that I'm still on, got to be on for the birth of my life. Yeah. But like, I feel so much better.

I'd gain weight. I can eat anything. Yeah. Just the things I have to look out for are things that have like tough skins or high fivers. But I feel very strongly that if both Ivan's father and I had not felt so much like that initial diagnosis was wrong that our child would not be alive right now. I very much feel that way because if we had gone down the path,

of disordered eating. It would have been a starvation, life or death situation. We weren't quite there yet, but we were marching down that path. And I just think that's so scary. Something that we haven't directly brought up yet, but I think it's important to just acknowledge is that while Ivan goes by the them pronouns at this time, they were medically recognized as a girl. And I think when it comes to eating behaviors, there is a lot more stereotype and perception that it must just be an eating disorder. Right. Yeah. It felt like there were some assumptions there. And I'm going to give kind of my own take on this in that them using the term disordered eating to me really seemed like they were tiptoeing around the assumption that this was an eating disorder, right, that it was

psychiatric in nature, but that the fact that, I mean, Ivan still wanted to eat, right? They couldn't match the square with the round hole, right? Yeah. I think they really wanted it to be, oh, it's just something that if they do some therapy and behavior treatments that this could be fixed. But because, again, there is this bias with women who are losing weight. Well, it must be because they want to lose weight and they have some sort of mental barrier or mental contribution. And all that did was just set Ivan back months and pounds, right? Yes. Yes. When if they just

believed Ivan in the beginning that the problem was they could not eat. Yeah. Yes, very much. If we could have just used that as the starting point, it would have avoided a lot of things. We could have jumped all the way to the end real quick. Yeah. So yeah, I think it just was a severe delay. And I have said this before on the podcast, but any rapid change in weight gain or weight. weight loss is extremely alarming when i and i just want to mention that for our our listeners that ivan is now at a doctor's appointment so it's not as we're talking about them behind their back right right they are literally literally um you know that is a vital sign right your heart rate how quickly you're breathing your weight so from the very beginning your weight so from the very

that coupled with when Ivan said that they would go three weeks without having a bowel movement. I know. When I found that out later, I was like, oh my God, I can't believe that you didn't tell me this. A CT scan of the abdomen is one of the most common, cheapest, if you're actually looking at the cost of things, cheapest scans that you could get, which would have diagnosed this, even just a plain X-ray. I did not even hear you say once, but a plain x-ray, which would also be able to show that backup, not in as great detail, but that also would have shortcut this diagnostic journey by months. It wasn't until I begged for this second train of thought. And I just thought, there have to be other kids that are out there. And maybe not even other kids, maybe it's adults, but I feel so strongly about other kids because

with children, I observed Ivan not advocating for anything because Ivan's 16 and didn't know I need to advocate for myself. And so you've got a child that is just saying, okay, I mean, you saw that at the beginning when we were talking. What did you think? Well, I mean, kind of was the, okay, that must be what I'm. I've got. Well, and when you're a teenager, so much stuff is happening to your body? Yes. How are you supposed to understand what's normal? And then also, Dana, I have to, you know, this parallel with your own mother suffering. Yeah. Ivan was going through the same process. It is called Cachexia. And that is the medical term we use for medical loss of weight. So when you

think of a cancer patient, they're so thin, we call that kakexic. They look kakexic, all right? And I can guarantee you, as you described watching, you know, seeing Ivan's back from the back and all of the, seeing all of the ribs, okay? That is a look of kakemia. That is a look of loss of weight due to malnutrition. Yeah. And so it, I can only imagine how it was for you to consider, is this also something that could be cancer-related? I was really, before we got the Crohn's diagnosis, I was coming to grips with myself that I'm going to lose my mother and my child in the same year. That's just the facts. That's just the way it is because nobody is giving me something that is for real and solid. It's going to happen.

And so the unbelievable relief I felt when they gave us that diagnosis and I felt like we finally hit the nail on the head. I mean, I can't even describe it because also during this time, you know, my mom is still aware of things. She's definitely going downhill. It's getting down because she was able to walk and do things and talk. But by the time we were in the stage that Ivan was in the hospital, there was no way that my mom was going to visit in the hospital. My dad was her 100% caregiver. So there's no way that my dad's going to visit in the hospital. We know that the cancer is just marching on because at that point, too, I had done research into cancer, this particular cancer. And it had a 5% survival rate at five years. And it wasn't until later on that I realized what that actually meant. It did not mean you were living your life and you were surviving and you were doing things and you were active. It meant you were breathing. And that was like the bottom line of survival at 5% at five years. And I'm like, oh my God, that means you're dead. That is not surviving. Breathing is not surviving. Breathing is not

even living. That's like the bare minimum of life. I think that one of the greatest things has been for my mom and her journey with cancer is the fact that Ivan was finally getting well because I might cry a little bit. So the last day that my mom was alive, Ivan went and visited and was one of the last people to see my mom aware and was able to tell mom that they were feeling better,

they were getting better because one of the things that my mom clung to really, really hard throughout the last stage of her illness was how are you doing? How are you doing? How are you doing? How are you doing?

Constantly asking. And I think that knowing that Ivan was going to be okay, allowed her to let go finally because that night she passed away. Wow. So we get the diagnosis and Ivan starts on the steroids and, oh my God, like the difference. It was like I had my person back within that first week of taking the steroids. My kid was back. That one, if you flash back to last summer a year ago, that was the person. that was the person that I had back. It was the coolest thing. Coolest thing. And we were on steroids for a month and a half before we were approved for with through the, of course, insurance again, you have to go through the approval process. Oh, God. Yeah. Right. And when you're 16 years old, when you're under 18, there are two kinds of Crohn's medication that you can get. There is not this whole litany of medications. You have no choices.

and we have learned so much. We've learned that the Crohn's medication is a biologic and you can actually become immune to the Crohn's medication itself and you have to change. And so when you have Crohn's, oftentimes you will go decades without changing your medication and you will get sick with the flu and you will now become immune to the Crohn's medication and you have to change it. And then you get sick again and you have to change it because when your body becomes ill and it creates the antibodies, it can become immune to the Crohn's medication that you're taking. And you can have this severe flare-up and that medication will never work again for the rest of your life. You are now immune forever, forever and ever. And it just blew my mind to learn that. And this is a chronic

illness that Ivan will have for the rest of their life and they will have to have a medical treatment for the rest of their life. And these treatments are extraordinarily expensive. They are between $15,000 and $17,000 every eight weeks. Yeah, mind-boggling. It shouldn't be like that. But here's the 16-year-old child that is going to have to figure out a way when they become an adult to make sure that they always have insurance that will always cover Crohn's, because there's some insurance that has excluded Crohn's as a thing that they will treat for. Probably because it's so expensive. I don't know.

They just, it's not all of them. it's just some of them. I just reminds me of last week's episode where our guest had like $2 million medication a year. Yeah. And it's just because you have an orphan condition, we can charge whatever we want. Yeah.

I think that it's so sad because everybody knows that this is a problem. Yeah. But yet nothing is happening to fix it. Yeah. What's the point in having medication if no one can afford it? Yeah.

Well, and it's, If anything, the protections that were put in place with the last major piece of healthcare legislation, which is, you know, you can't discriminate on the basis of prior diagnoses, you know, staying on your parents' insurance until age 26. These are all new protections. These are all protections only within the past 10 years. So we are still vulnerable to having those protections be taken away. Right. And with the changes right now, my fear is that that is what is going to happen because my insurance has already been canceled for this year. That it is no longer offered in the state of Kansas, the insurance that I have because I'm on the ACA. And so starting in the end of this year, when open enrollment happens again, I'm going to be searching for a whole new insurance. And I have no idea that I will be covered as well as this insurance. covered us. So we've got two more treatments for this year, one in October and one in December, because we're every eight weeks, it's based out. I will get new insurance starting in January 1 of some kind, and we will have to go through the process of getting new medication approved. And this new insurance company will hopefully approve the same medication that has been successful so far, but there is a chance that it may not. Well, Dana, I just wanted to thank

you and Ivan for coming on the podcast and sharing both of your story. Obviously, this is, I can't imagine being 16 years old and telling the world my poop story. And so, listen, Ivan is a lot more self-assured than certainly I was when I was 16 years old. So it's really, you know, congratulations on raising a wonderful human. Yeah. I think there are so many both parents and young adults who are going to take so much from this episode. And it's really being open and sharing these stories that makes people talk more and hopefully have a child reach out to their parent, right? And have the parent reach out to their child and check in and just make sure things are okay. I know that hoodie kid, right?

Yeah. Yeah.