Transcript

Podcast Host (0:01)

Hi, Dana and Ivan. Welcome to the Medical Detectives podcast. We're so happy to have you both with us.

Dana (0:08)

Thank you.

Ivan (0:09)

Thank you.

Co-host or Medical Expert (0:11)

So this is actually our first episode with not one, but two guests. So welcome to a learning opportunity for everyone involved.

Dana (0:26)

And we're game. We are so game.

Ivan (0:29)

Let's do it.

Podcast Host (0:32)

Well, Dana and Ivan, I'm gonna let you two kind of introduce yourselves to our audience and your relationship to one another.

Dana (0:39)

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.

Podcast Host (0:56)

Well, Dana, could you describe for us what Ivan was like as a child?

Dana (1:02)

Ivan was, in fits and spurts, an easy child. There, 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. So funny, smart, alecky, sarcastic. Really just a delight to be around. So we, we have a lot of fun together.

Podcast Host (1:42)

Well, 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?

Ivan (1:55)

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 weigh myself, I was like, Damn, I lost 30 pounds.

Dana (2:07)

Well, and, and what was really weird too, leading up to this time, Ivan has a extremely broad palate, will try anything, any food, not a picky eater at all. And I would, I would make terrible dishes and I'd make good dishes and Ivan was always like, yeah, this is, 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.

Summary

The Medical Detectives

Episode Title: Dana & Ivan's Story: Watching Your Child Disappear
Hosts: Dr. Erin Nance & Anna O’Brien (Soft Skills Media)
Date: September 24, 2025

Brief Overview

This episode chronicles the harrowing and intricate journey of Dana and Ivan, a mother and teenager (respectively), as they navigate Ivan’s mysterious, severe weight loss and escalating health crisis. The tale pulls listeners into the confusion, misdiagnosis, heartbreak, and eventual relief as they battle both the medical system and misconceptions while searching for answers—and ultimately, a life-saving diagnosis.

Key Discussion Points & Insights

1. Early Warning Signs: Changes in Eating and Weight

Dana describes Ivan as a smart, funny, food-loving child:
- “Ivan has a extremely broad palate, will try anything, not a picky eater at all.” – Dana [02:07]
The initial clue? Ivan’s friends noticing sudden weight loss:
- “I went to go weigh myself, I was like, Damn, I lost 30 pounds.” – Ivan [01:55]
Ivan didn’t consciously restrict eating but lost appetite and simply “wasn’t hungry.”
- “I just wouldn't have a drive to eat...my lunch at school would get smaller and smaller…only half of that. So it's like not that much food, and that's the whole day.” – Ivan [03:01]

2. Invisible Suffering & Parental Perception

Bulky clothing and hectic family life (including Dana coping with her mother’s cancer) delayed awareness of the crisis.
- “I wasn't noticing any physical changes because Ivan was wearing these sweatshirts…so I couldn't see Ivan's body.” – Dana [04:09]
- “My mother is dying of lung cancer. So I’m very distracted mentally…that threw me off too.” – Dana [06:48]
Eventually, shock:
- “I could see every rib bone all the way down Ivan’s back...from this healthy kid to just a skeleton before my eyes.” – Dana [05:47]

3. Escalating Symptoms: Fatigue, Gastrointestinal Issues, and Pain

Extreme constipation (up to three weeks without a bowel movement), profound fatigue, and sleeping through classes.
- “My record of not being able to go to the bathroom...was three weeks almost, which is insane.” – Ivan [07:40]
- “I would sleep in almost every single class…even slept on the floor in school at one point.” – Ivan [08:29]
Pain intensifies and eating causes vomiting:
- “If Ivan eats too much...Ivan’s just throwing up all over the place in the van, all over in this bag while we're driving down the highway.” – Dana [12:33]
- Pain’s location and randomness:
  - “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 eat…Just get to the next day. I'm just so tired.” – Ivan [14:34]

4. Healthcare Hurdles: Misdiagnosis & Red Tape

Bloodwork showed malnutrition, not inflammation, so initial attempts focused on dietary interventions and OTC remedies.
New pediatrician diagnoses “disordered eating” after seeing weight loss and aversion to eating, referring to an expensive, out-of-pocket clinic.
- “It’s a $5,000…program. Insurance does not cover it.” – Dana [16:35]
- “What is the doctor's engagement?...[they] just need to go to your pediatrician. This doesn't make any sense.” – Dana [16:45]
The family’s concern: this didn’t fit Ivan’s personality or feelings about food, but the system kept pressing this path.
- “I feel like we need another train running in parallel...there is something else that is happening. Can we please, please, please, can we do some other tests?” – Dana [22:05]

5. Medical Gaslighting & Gender Bias

Discussion around medical assumptions, especially with female-assigned patients, and biases toward diagnosing eating disorders.
- “There is a lot more stereotype and perception that it must just be an eating disorder.” – Co-host [52:01]
- “They really wanted it to be…something that if they do some therapy and behavior treatments, this could be fixed…with women who are losing weight, well, it must be because they want to lose weight…” – Podcast Host [52:53]

6. Acute Crisis: Hospitalizations & Tipping Point

Ivan experiences tachycardia and severe dehydration (blue lips, racing heart):
- “Ivan’s lips are so blue…could not feel a space between heartbeats...Is this bad enough that we need to go to the hospital?” – Dana [25:53]
- “Your heart rate was at 150 beats a minute...the machine is screaming.” – Dana [27:34]
- IV fluids resolve the acute crisis, revealing severe dehydration due to malnutrition and GI issues [29:15].

7. Diagnosis Breakthrough: Clear Imaging and Persistence

Further insistence gets them abdominal sonograms, then a CT scan:
- Diagnostic eureka moment: “It’s gallstones.”
  “We were all, like, so happy. We were like, finally, something!” – Ivan [34:25]
But eating a “celebration dinner” triggers the worst pain yet, leading to another ER visit:
- “[I wake] up at three in the morning, delirious as hell…the pain...can I put in 13 million down?” – Ivan [36:00]
Another round of imaging reveals the real cause:
- Intestines fully backed up—“literally full of shit.” – Co-host [44:08]
- Extensive constipation and intestine inflammation, prompting a hospital admission and bowel cleansing.

8. Final Diagnosis: Crohn’s Disease

Colonoscopy confirms: “You have the granulomas for Crohn's. It’s like, finally an actual diagnosis. Like, real honest to God.” – Dana [50:04]
The instant improvement and new reality:
- “The difference…it was like I had my person back within that first week of taking the steroids. My kid was back.” – Dana [58:27]
- Ivan gains weight, regains energy, and can eat again—with some dietary modifications.

9. Reflections: Systemic Issues, Advocacy, and Lifelong Management

The family credits their intuition and unwillingness to accept the initial diagnosis for saving Ivan’s life:
- “If we had gone down the path of disordered eating, it would have been a starvation, life or death situation.” – Dana [51:13]
Ivan’s future includes hefty medical bills (“$15,000–$17,000 every 8 weeks” for Crohn’s medication [61:19]), needing always to have insurance.
Broad system critique:
- “Everybody knows that this is a problem…but yet nothing is happening to fix it.” – Co-host [62:06]
- Fears over changing healthcare laws and insurance availability/sufficiency.

Notable Quotes & Memorable Moments

On Medical Dismissal:
“All the pieces and put them in the bucket and shook them up, and out came disordered eating.” – Dana [19:45]
On Advocacy:
“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.” – Dana [55:20]
On Parental Fear:
“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.” – Dana [57:05]
Ivan’s Humor Amid Crisis:
“I just want to lay down...I was literally full of shit.” – Ivan [44:08]
On Systemic Healthcare Problems:
“What’s the point in having medication if no one can afford it?” – Co-host [62:11]

Timestamps for Important Segments

Ivan’s Friends Notice (First Clue): [01:55]
Lack of Appetite & GI Issues Emerge: [03:01–08:52]
Parental Discovery of Severe Weight Loss: [05:47]
Pediatrician Diagnosis of “Disordered Eating”: [15:24–18:45]
Acute Dehydration & Hospitalization: [25:53–30:15]
Joy at First (But Incomplete) Diagnosis (“Gallstones”): [34:25]
Massive GI Backup Discovered (CT): [41:41–44:08]
Colonoscopy & Crohn’s Diagnosis: [49:43–50:04]
Insurance and Lifelong Management Fears: [61:19–63:41]

Episode Takeaways

Don’t accept easy answers: Rapid, unexplained physical changes must be thoroughly investigated, not dismissed as psychiatric or behavioral by default.
Advocate, advocate, advocate: Parents’ intuition and refusal to accept the first “label” was crucial in getting Ivan the care they needed.
Medical systems and biases: Gender perceptions and bureaucracy can dangerously obscure real, urgent medical problems, especially in adolescents.
Access and cost: Lifelong access to treatment remains precarious and expensive, emphasizing the need for systemic healthcare reform.
Community: Sharing stories like this one is powerful for other families, patients, and providers in learning to listen, question, and be persistent in the search for answers.

Final Words:
The hosts, Dana, and Ivan hope that by sharing this detailed journey, they empower other families and patients to advocate fiercely, question persistently, and to never give up hope when something feels wrong—even when the system tries to convince you otherwise.