Ep. 72 | 17 Doctors

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In the winter of 2022, a mom in her mid-30s sat in the bleachers at the local ice hockey rink cheering on her six-year-old son.

She always enjoyed watching these hockey games.

The kids were adorable as they slipped around the the ice trying to control the hockey puck.

Her son was small for his age.

He was so tiny, she almost hadn't signed him up for the team again this year.

But he loved hockey and his teammates, so she didn't have the heart to say no.

The mom clapped and hollered when her son got the puck and started skating toward the opposite goal.

Then he swung his stick and the puck went sailing past the other team's goalie.

Her son threw his arms up in celebration, and then he suddenly crumpled to the ice in pain.

Fear ran through the mother as she heard her son's wail.

Nobody had touched him.

All he'd done was swing a stick and raise his arms.

But he was crying so hard, it was like he'd broken a bone or cracked his head open on the ice.

The referee skated over to the boy to see what was wrong as the mother raced down the bleachers to her son's side.

She didn't know if she should call him an ambulance or just tell him to snap out of it.

But judging from how loud he was screaming, the pain he was feeling was very real.

From Balin Studios and Wondry, I'm Mr.

Balin, and this is Mr.

Balin's Medical Mysteries, where every week we will explore a new, baffling mystery originating from the one place we all can't escape, our own bodies.

So, if you like today's story, the next time you're in the Follow Button's house, secretly replace all the pictures hanging up on their walls with a slice of square cheese.

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During the COVID-19 lockdown in 2020, Caroline Daniels stood in her backyard in suburban Iowa, watching her husband, Brian, blow blow up a small bouncy house that she just bought on Amazon.

Brian had nearly gotten the thing inflated.

They'd all been cooped up in the house for over a month because of the pandemic, so it was a godsend that the weather was nice and they'd gotten something fun for the kids to do outside.

The moment the bouncy house was inflated, Andrew and Robin went running to it and piled inside with their dad.

They screamed and giggled as their father bounced around them, launching them a few feet into the air every time.

Caroline smiled and went back into the kitchen where their nanny was cutting up some veggie sticks for a snack.

She was about to grab a knife and help when the screaming outside turned from fun to painful.

Caroline dashed back outside and found her husband kneeling next to Andrew.

The little four-year-old was curled up on his side, sobbing with pain.

Caroline helped Brian scoop Andrew into his arms, then followed them inside.

Brian laid Andrew on the sofa in the living room so that he and Caroline could try to figure out if the boy had any broken bones.

But after a minute of prodding, Caroline felt sure that nothing was seriously wrong.

Besides, Brian assured her that Andrew hadn't landed hard or anything.

He just bounced a little, then started screaming.

This whole situation definitely seemed odd, but Caroline assumed that, you know, he must have just landed at an odd angle or something.

She gave him some Motrin to help with the pain, and after a few minutes, Andrew did calm down.

And by dinner time, he was back to his usual happy-go-lucky self.

By the following morning, Caroline had put the whole bouncy house incident out of her mind.

She left Brian watching the kids while she hopped on a morning Zoom call for work.

Halfway through the call, though, Caroline heard a piercing scream in the yard.

It was Andrew again.

She turned off her camera and raced downstairs.

By the time she got to the backyard, the nanny was kneeling beside Andrew, who was once again in the fetal position and crying.

Caroline asked if Andrew had fallen down, but the nanny said no.

He was just standing there, and then he suddenly yelped and fell to the ground, and Andrew had been crying ever since.

Caroline couldn't tell if Andrew was truly in pain or if he was just having a meltdown.

She picked up her son and asked what was wrong, but it was clear he was in no mood to talk.

He just cried.

Caroline wasn't sure what to make of it.

Andrew was not the kind of little boy to throw temper tantrums.

But she also knew that every child gets overwhelmed sometimes.

Besides, he hadn't seen his friends in months because of the COVID lockdown, and he was tired of being at home all the time.

And so Caroline decided he must just be having a moment.

Still, she gave him another Motrin and about 15 minutes later, Andrew was back to normal.

It suddenly occurred to Caroline that Andrew's molars might be coming in, which could be extremely painful.

Once he was outside playing with the nanny again, she picked up the phone to call his dentist.

A few weeks later, an orthodontist named Dr.

Tyson Graham sat down on a stool in his treatment room and turned to face little Andrew, who was sitting up in the examination chair.

Andrew's mom was in the corner, looking anxious.

Dr.

Graham smiled at her, then explained to Andrew how he was going to try to help the little boy with the pain he'd been experiencing lately.

Andrew's regular dentist had already taken x-rays of Andrew's mouth and found that Andrew had been grinding his teeth at night.

Teeth grinding can cause difficulty breathing at night, and the dentist thought that might explain why Andrew had been so moody and exhausted recently.

He wasn't sleeping well.

So the dentist had referred Andrew to Dr.

Graham, thinking that the orthodontist might find a way to prevent the boy's teeth grinding.

But as Dr.

Graham examined Andrew's mouth, he found a different issue.

Andrew's palate, the roof of his mouth, was too narrow for his age.

In Dr.

Graham's opinion, that, not teeth grinding, was what was making it difficult for Andrew to breathe at night.

He turned to Caroline and explained that if Andrew had a wider palate, he'd very likely feel better.

They could put an expander in Andrew's mouth for a couple of months to push the palette out.

Caroline looked nervous, but Dr.

Tyson explained that the expander wasn't that different from getting braces, and it would definitely help Andrew breathe better.

Caroline still looked unsure, but she agreed.

Dr.

Graham nodded and then went to get a few supplies to install the palette expander.

A month later, Caroline squeezed into the bathroom with Andrew and Robin, squirting little dabs of bubblegum toothpaste onto their toothbrushes.

Then all three of them brushed their teeth together, a little bedtime routine they'd fallen into recently.

Mostly, this was so Caroline could make sure they actually did it, but it was also to make sure Andrew used the special mouthwash she had bought him to keep his palette expander nice and clean.

Caroline was tired, and she could tell her kids were exhausted too.

They'd spent all day outside, playing a socially distanced version of hide-and-seek they'd made up with the neighborhood kids.

Caroline was glad to see Andrew back to his old self.

It seemed like the palette expander had really worked.

As the kids got into their pajamas, Andrew asked if his mother would measure them against the door frame in their bedroom.

Caroline smiled.

She had been marking their heights there since they were old enough to stand.

Robin chimed in that she wanted to be measured too.

Caroline knew why there was suddenly all this interest in being measured.

The neighborhood kids had been bragging about how tall they'd gotten.

So of course her kids wanted to know too.

Caroline told Robin to stand against the door jamb and carefully marked her height with a pencil.

When Robin stepped away, it looked like she had grown a full inch since they'd last measured her.

Caroline wrote the date on the jam as Robin grinned, then it was Andrew's turn.

But after she measured him and Andrew stepped away, it looked like he had barely grown at all.

Andrew frowned, looking at his sister's mark with a tinge of jealousy.

Caroline assured him he would grow by next month, but she knew this was unusual for a four-year-old kid.

He should be growing like a weed.

And so she decided she would make an appointment with a pediatrician in the morning, just to make sure nothing was wrong.

But later that week, Caroline felt frustrated as she paced her kitchen, listening while Andrew's pediatrician explained over the phone that Andrew was not growing because of the pandemic.

The stress of all the isolation and fear was negatively affecting Andrew's growth, and unfortunately, because they were still in the pandemic, there really wasn't much they could do.

They should just wait it out for a few months.

But as she hung up the phone, she felt certain that something was wrong with Andrew, and it had nothing to do with COVID-19.

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In early 2021, about nine months after Andrew first started experiencing these sudden bouts of extreme pain, Caroline took him back to his pediatrician for a follow-up.

She let Andrew walk ahead of her into the office.

She intentionally trailed behind him a little so she could watch his stride.

She saw he was dragging his left foot instead of picking it up and actually stepping with it.

He'd been doing this this whole past week.

It was like his right foot was doing all the walking and his left foot was just along for the ride.

At this point, it was another symptom to add to the list.

Over the past few months, Andrew had been having headaches and meltdowns again.

Besides that, he seemed exhausted all the time.

The Motrin still helped somewhat, but Caroline could see him getting more solemn and less playful with each passing day.

She knew her baby was in pain, and it had to be due to something other than his narrow palate or the pandemic.

Caroline had taken him to several doctors, trying to get some answers.

A neurologist had told her that Andrew had migraines, while an ear, nose, and throat doctor still believed her son was having breathing issues while sleeping, and so he likely couldn't fall into a deep, undisturbed sleep, which explained why he was so tired.

But to Caroline, none of these doctors were addressing the root problem.

She felt like each doctor was focusing on one single symptom, but nobody was taking a step back back to see the whole picture.

What was the underlying condition or disease that was causing all these symptoms?

And until somebody could put all the puzzle pieces together, Andrew would be the one suffering.

But no matter how many times she tried to communicate this with all the doctors and specialists, it was like nobody seemed to understand.

Caroline felt like she was losing her mind, but all she could do was just keep going to more doctors.

And so she'd taken Andrew back to his pediatrician's office, hoping maybe he might finally have a real answer for her.

While the pediatrician measured Andrew's height and weight, Caroline went through all of Andrew's symptoms.

She expected the doctor to offer some kind of overarching explanation.

Instead, he just stood upright and told her there was good news.

Andrew had grown a bit since his last appointment.

Caroline supposed that was good, but the rest of Andrew's symptoms showed no improvement whatsoever.

And on the whole, Andrew wasn't feeling good.

He was still in pain.

And now there was this lazy foot foot issue.

She wanted to know how they could start actively helping her son instead of just tracking all his symptoms.

The pediatrician suggested that Caroline put her son in physical therapy to correct his foot imbalance.

He promised to write a referral.

Caroline thanked him, though secretly she felt overwhelmed by how many appointments this would likely add to their already doctor-heavy calendar.

But it just felt like there was nothing else she could do.

She had to go through with it.

So she smiled and promised the doctor she would get Andrew into therapy soon.

Later that week, while Andrew was going through his physical therapy routine, Caroline, who was in the room watching him, felt uneasy.

Andrew's therapist, Miss Ashley, was walking Andrew through an examination.

Caroline smiled as Andrew walked around the room with a determined look on his face.

Miss Ashley took notes and told him he was doing a great job.

Then, Miss Ashley asked him to sit cross-legged on the floor.

Andrew tried, but he couldn't quite get his legs to cross over one another.

One leg would bend, but he couldn't bend his other leg enough to sit upright.

Before long, he got frustrated and told Miss Ashley he couldn't do it.

Miss Ashley said that was okay, and then they moved on to other activities.

After a session was over, Andrew came running over to his mom and Caroline scooped him up.

She let him rest his head on her shoulder, and then Miss Ashley came over and explained that Andrew might have a congenital condition called chiari malformation.

That's when a part of the brain, called the cerebellum, bulges through an opening at the back of the skull, right where the skull joins the spinal canal.

The bulge puts pressure on the cerebellum and the spinal cord.

It can cause severe headaches, scoliosis, and sleep apnea, which is when breathing becomes interrupted during sleep.

If Andrew did have a Chiari malformation, he could need surgery.

The thought sent a shiver through Caroline.

She never thought that Andrew might need to be cut open.

She hated picturing it, and she had no idea how she was going to explain it to him.

The following winter, in 2022, Caroline was in Andrew's bedroom helping him into his pajamas, the same pair of red flannel pajamas that he'd been wearing for two years now.

It felt like his sister Robin outgrew her clothes every few months, but Andrew hadn't needed new pajamas or t-shirts since before COVID.

Andrew was six years old now, but he still looked like he was closer to four, and this evening, he was throwing a tantrum like a bona fide toddler.

But Caroline didn't blame him.

After dinner, she and Brian had taken Andrew out for ice cream and broke the news.

Because of what was going on with him, he had to quit his hockey team.

The skating was causing too much pain in his knees and back.

It was just too much for his underdeveloped body.

At first, Caroline just felt heartbroken for making Andrew so sad.

But now, she was so frustrated, she was becoming angry at all the doctors.

She was tired of having to tell Andrew that nobody knew why his body was failing him.

The latest theory that Andrew had Chiari malformation wasn't right either.

Andrew had tested negative for the condition last year.

Since then, Caroline and Brian had taken their son to countless more specialists.

A new pediatrician for a second opinion, a pediatric internist, even an adult internist, just in case they found something different.

In total, Andrew had seen 17 different doctors over the last three years.

But all those doctors were still stuck in a cycle of treating his symptoms individually.

Caroline finally got Andrew into bed, though it broke her heart to leave him red-faced and tear-streaked, his little arms wrapped around his favorite stuffed animal.

She went downstairs and started scrolling on her phone just to decompress.

A Facebook friend had posted an article that looked interesting about a new artificial intelligence software called ChatGPT.

You could ask it any question, no matter how complex, and it would scan the whole internet in a matter of seconds to generate an answer.

People were using it to create marketing plans for their companies, to write blog posts, and to make mashups like fairy tales written in the style of a mafia movie, or resignation letters if they were written by famous TV characters.

It seemed like a fun way to spend an hour, so Caroline started messing around with ChatGPT.

When Brian came into the living room and sat down next to her on the sofa, she read him some of the funniest mashups it had made.

Brian laughed and then joked that she should try to use it to diagnose Andrew.

Caroline laughed dismissively, but then she wondered.

It was a long shot, but why not?

Maybe ChatGPT would find some rare, obscure disease that most specialists had never heard of.

Or maybe it would unearth some clue, some pivotal question to ask that would help one of his doctors see the whole picture.

The worst that could happen was nothing, really.

So Caroline started typing all of Andrew's symptoms into ChatGPT.

She even went and got her copy of medical notes from an MRI he'd gotten and typed them in line by line.

It was a tedious process, especially doing it on her phone, but eventually when she was was done, she hit enter and waited.

A few moments later, the little text box started suggesting possible answers, but they were all conditions that Andrew had already been tested for.

Caroline's heart sank.

She felt stupid for thinking this brand new internet AI chat box could magically diagnose her child, but then she realized she actually had left out one of his symptoms.

The fact that he could no longer sit cross-legged.

She told ChatGPT to redo the search, including that symptom, and within moments, it suggested a condition that she'd never heard of, and none of Andrew's doctors had ever mentioned it either.

But as she started reading the symptoms of this condition aloud, Brian sat up straight, his eyes going wide.

He ran to get his laptop and Caroline started researching on her phone.

Eventually, she found a Facebook group for families living with and caring for those with this condition, and to her surprise, their stories were nearly identical to Andrew's.

A week later, Caroline was bursting with anticipation as she sat next to Andrew in a brand new doctor's office.

They were waiting to see Dr.

Hannah Gordon, a pediatric neurosurgeon.

Caroline had brought a packet of research with her and had it waiting on her lap for when the doctor came in.

She hoped that by the end of the appointment, Dr.

Gordon would be able to officially diagnose Andrew and that Caroline would finally know what was wrong with her son.

When Dr.

Gordon finally came into the exam room, Caroline introduced herself and explained that usually she was not one to surf the internet and self-diagnose, but she'd actually found some compelling evidence online, and then she handed over the research packet she'd compiled and she watched the doctor read over it.

When Dr.

Gordon laid eyes on Andrew's MRI scans, she smiled and told Caroline that she was fairly certain she did know how to help Andrew.

Dr.

Gordon explained that Andrew was suffering from a condition called tethered cord syndrome, the same condition that ChatGPT had identified.

The spinal cord runs like a cable through the bones that make up the spine from the base of the skull to the tailbone.

However, in rare cases, the spinal cord improperly attaches itself to something inside the bones of the spinal column.

As a result, the spinal cord's movement is limited.

In short, it gets stuck.

Andrew's spinal cord was stuck to one of those growing spinal bones, causing him extreme pain and all his other symptoms.

It was also why he couldn't sit cross-legged, a symptom that's so common among people with tethered cord syndrome that ChatGPT recognized the pattern.

Caroline believes that ChatGPT was able to diagnose Andrew because it was doing the very thing she had spent years asking doctors to do.

It took a step back and considered all of Andrew's symptoms, instead of picking and choosing or focusing on them one by one.

Luckily for Andrew, he was able to undergo surgery to detach his spinal cord from where it was stuck.

Once the tension was gone, Andrew's symptoms soon disappeared and he went back to his happy-go-lucky self.

For real this time.

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Bollin's Medical Mysteries on the Wondery app, Amazon Music, or wherever you get your podcasts.

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From Bollin Studios and Wondry, this is Mr.

Bollin's Medical Mysteries, hosted by me, Mr.

Bollin.

A quick note about our stories.

They are all inspired by true events, but we sometimes use pseudonyms to protect the people involved.

And a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

This episode was written by Aaron Lamb.

Our editor is Heather Dundas.

Sound design is by Ryan Potesta.

Our senior managing producer is Nick Ryan.

And our coordinating producer is Taylor Sniffin.

Our senior producer is Alex Benedon.

Our associate producers and researchers are Sarah Vitak and Taja Pelaconda.

Fact-checking was done by Sheila Patterson.

For Ballin Studios, our head of production is Zach Levitt.

Script editing by Scott Allen and Evan Allen.

Our coordinating producer is Samantha Collins.

Production support by Avery Siegel.

Executive producers are myself, Mr.

Bollin, and also Nick Witters.

For Wondry, our head of sound is Marcelino Villipondo.

Senior producers are Laura Donna Palavota and Dave Schilling.

Senior managing producer is Ryan Lohr.

Our executive producers are Aaron O'Flaherty and Marsha Louie for Wondry.

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