Diagnosis (2019–…): Season 1, Episode 5 - A Question of Trust - full transcript
Lashay, 17, has had multiple bad interactions with Doctors in the past in regards with her inability to keep food and liquids down. Can they trust the crowd?
[footsteps]
-Can I tell you a really personal story?
-[man] Yeah.
When I was 19,
I came home for Christmas
and then went back to college.
And while I was there, my mother was sick.
My father took her to the hospital.
They took her back,
and then the doctor came out.
He came up to my father and he said,
"I'm sorry. She's gone."
My father said,
"Oh, she can't have gone.
I have the car keys".
And the doctor said, "No,
you don't understand.
She's gone."
He couldn't bring himself to say
what he really meant.
And it took my father
a ridiculously long time
to hear what the doctor couldn't say:
that my mother had died.
That is an important reason
why I went to medical school.
I thought,
surely I can do a better job than that.
Surely people deserve...
better than that.
[man] Ready, guys? Okay.
Our dear heavenly Father,
we pray that thy spirit will be
with all of us
and especially Lashay in her time of need.
I say these things
in the name of Jesus Christ. Amen.
Amen.
[indistinct conversation]
Eleven or 11:30 down there 'cause
it's supposed to snow at ten tomorrow.
-[woman] Okay.
-[woman 2] It's supposed to rain.
[woman 2] I know.
[woman] Okay?
[woman]
Is it still supposed to snow, Jeff?
Friday night and Saturday?
[Jeff] More so on Saturday.
[woman]
Somewhere like Zions or just somewhere--
[woman 2] You what's really funny?
I haven't been somewhere where it's warm
or somewhere where it's like...
[woman 3 groans]
-[indistinct conversation]
-[woman 3 groans]
[Jeff] Do you need a napkin?
[woman 3] My body is going through
something no one can really figure out.
[indistinct conversation]
-[woman] Are you okay?
-[Jeff] Want me to clean it up?
Like, after I eat or...
[gulps]
[indistinct conversation]
[woman 2] Drink this one.
[Lashay] I don't know why,
but it just turns my stomach
in a way where I just...
can't handle it.
[water sloshing]
Ever since this has started,
I haven't kept fluids down.
All the doctors said, like,
"I want you on a feeding tube,"
but I'm kind of...
I still want control over,
like, what I eat. I still wanna eat.
I still wanna have that.
[clears throat]
[indistinct conversation]
[Lashay] And so...
whenever I throw up, I keep on eating...
just so I can get some calories in
and just have something in my stomach.
[indistinct conversation]
[woman]
We try not to make it a focal point.
We try and just move on with our lives,
have somewhat of normality for her.
Even though we go through this,
-we don't focus on--
-[Lashay] I get upset if they focus on me
and if they're like, "Are you okay?"
'Cause after two years...
of every single day, every single...
[Lashay retches]
[woman] It's a fine line, you know,
-but there's not a lot they can do--
-[Jodelle] They don't know what to do.
[Lashay]
A lot of the doctors are just like,
"We can't help you.
Go find a different person to help you."
I'm, like, to that point
where it's just, like,
is anyone gonna help me?
[Lisa] On the surface,
you might think that this is
classic teenage bulimia,
but after reviewing her records,
I'm pretty sure
that is not what's going on here.
One thing that was clear
is that she didn't have the kind
of nutritional abnormalities that you see
with self-inflicted vomiting.
When a teenage girl shows up
to a hospital
with a complaint of constant vomiting,
the medical world far too often
just assumes
that the girl has an eating disorder.
So I'm hoping the crowd
will be more open minded
in their diagnosis.
She's 17 years old.
She needs to have a teenage life.
That's what we owe her.
[Lashay] So today I am gonna go to school.
This is a really rare thing that I do.
I can't really go to school.
So, normally, I do home schooling,
so I do packets.
I try to do as much as I can,
and then I circle the ones
that I have questions on,
and then I will go to a teacher.
I just wanna get an education
because I know,
again, a lot of people
in my position don't.
I try to do my makeup every day.
When I'm pale...
I don't like when people are,
"Oh, you look really sick.
Like, I can tell
you don't feel good today."
So when I do put makeup on,
I do feel like it's an armor
and it's like a protection.
When I got sick, I lost a lot of friends,
so I do feel a little isolated.
The worst part
about this is I can't have
the connections I wish
I could have with people.
♪ Happy birthday to me ♪
♪ Happy birthday, dear Lashay
Happy birthday to me ♪
Before I was sick, I was happy, bubbly...
Okay. One, two.
I had a very, like, active social life.
I would always be out with friends
and want to know more people.
I was on the high school soccer team.
And my family loved to adventure.
[woman] Oh, wow.
The tail's, like, wrapping around you now.
Hi, America.
When we went to Costa Rica,
we did a ton of stuff.
My favorite was probably
the zip lining.
But then our second day in Costa Rica,
we went to Manuel Antonio,
and it's a national park.
We go and we see this raccoon,
and the raccoon came towards us,
bypassed my sister and went straight
towards my foot and grabbed onto it.
It broke the skin.
Within two days of returning home,
she started to have symptoms
of vomiting, headache, neck pain
and stomach pain.
Our doctor was like,
"You need to go the emergency room.
Get the rabies vaccination right now."
[nurse] All right. One, two, three.
But then everything got really bad.
[Jodelle] Are you okay?
That hurt.
[groans]
-[groans]
-[indistinct conversation]
[moaning]
Prior to, you know, 2014, this child lived
an active, normal, wonderful life,
and then it just switched.
Woo-hoo!
[Lisa] This whole story started
with Lashay's close encounter
with this animal,
and that's maybe an important clue.
That or maybe even the rabies shot.
I wonder whether just the trauma
associated with these
two terrible experiences
could have some role
in what happened to her afterwards.
[groans]
[Lashay] After Costa Rica,
that's when I started throwing up
and had all these symptoms.
When I eat, it's hard for me
to move around.
I can be hunched over, like,
for three hours,
and I have really sensitive eyes.
I can't handle light very well.
In ways, it feels like my head
is literally about to explode.
[woman] All right, sweetie. Tell me,
have you been able to drink or anything
-in the last few days?
-No.
Are you able to urinate?
No, not really.
Make sure her health care provider
is aware of that.
We just don't want
any organs shutting down.
[Lisa] Because Lashay has a hard time
holding down food or drink,
she and her doctors decided
to insert a port.
Now, a port is intravenous access
that goes directly into your heart.
It's an effective way to deliver fluids,
but it's also an extremely effective way
to deliver bacteria
to the most sensitive part of your body,
and so any kind of infection
can be life threatening.
[nurse] All right, my dear. Are you ready?
There's blood,
so we're in.
[Jodelle]
A lot of doctors are very leery of ports,
but it was hard
getting enough hydration in her
that she wasn't falling over or fainting.
As a mother,
that's a hard pill to swallow,
to say, " Okay, I'm going to do this,"
because...
it's all trial and error.
And your error can be,
you know, life threatening.
One of the medications that she was on,
she was on the kitchen floor...
Sorry.
...trying to vomit.
[tearfully] She couldn't open her mouth.
Um...
Turns out the side effects of one of
the medications that she had been put on
was lockjaw.
Now, why would you give a child
that vomits constantly
a medication
that a side effect is lockjaw?
[breathing heavily]
[Jodelle] You know, at some point in time,
you know,
you're not as trusting,
and you're not as,
"Okay, I will do whatever you say."
[coughs]
[Jeff] I get very angry
'cause we do look for the health care
to fix our problems.
After two and a half years now,
still no answers.
We're left to kind of fend for ourselves
and try to figure it out.
[Lashay] Grab a ball.
Go get it!
[Lisa] Going through Lashay's records,
I see that she started seeing Dr. Coleby,
a doctor who thought
that she had developed
a leak in her cerebral spinal fluid
and that caused her
to have headaches and light-headedness.
Good girl!
A blood patch is
the way you patch a CSF leak.
Blood is injected into the sac
surrounding the spinal cord.
The blood goes to where the leak is,
clots off and blocks the leak.
It's a very invasive procedure.
Um, so Lashay Hamblin is 15.
I met her when she was 15 years old.
She's a 16-year-old girl, um,
who's suffering from intractable nausea,
vomiting, abdominal pain,
dizziness, headaches.
Um, I have a high clinical suspicion
that she has a CSF leak.
It can happen often after a trauma
or a traumatic event,
like if she was coughing very hard,
or vomiting, like in her case.
A CSF leak can be difficult
if you don't know where it's at,
and half the time, we don't know.
The current consensus amongst the experts
is to go ahead and do a blood patch,
and every time we do that,
we have a 30% chance of it working.
So, the fact that
it didn't work the first time
doesn't mean it wouldn't work.
The challenges I have with this family
is they have a low trust
of the medical community,
and when I propose things that are
more invasive, that are higher risk,
they're less likely to wanna explore that.
[Jodelle] After the blood patch,
she couldn't move out of the bed
for about six weeks.
I could not get out of bed,
and when I did, I would fall to the ground
just because my body was in so much pain.
[moaning]
What has been caused from those procedures
has been painful
and, at times,
it's worse after than before.
I've given them options
and they don't like my options...
quite frankly.
The one thing they know works
is IV fluids,
and there's a lot of pressure for me
to just prescribe IV fluids
on a daily basis.
What we know is
that's not a long-term solution.
That is definitely a band-aid.
A port placement is not a small deal,
and there are patients who have died
from those because of infections.
She has a very real problem.
I believe that Lashay's problems
are legit.
The struggle they're having is how do they
interact with the medical community
and find a solution that is agreeable
to their values and their standards?
And I think their standards may be
a little bit too high
for the type of problem she has.
I think you can't fly blindly.
I have to protect her
and siphon through some of all these,
"Oh, you've gotta do this.
Oh, you've gotta do that."
[Jeff] You've gotta think about
-the long term side effects--
-Damage.
Damage that can happen, that can occur.
[Jodelle] Is it worth it?
No one's really giving us
that hope that it's worth it anymore.
[video call ringtone]
[Lisa] So let's start with you, Lashay.
Tell me what happened from the beginning.
Take as much time as you need.
[Lashay] Okay.
I got bit by a raccoon.
I started throwing up,
and I wasn't getting any better,
so we went to--
-They admitted you.
-They admitted me into the hospital.
-They tried to figure--
-And no one knew what was wrong.
So, what did you think...
What were they saying to you
about the cause of your regurgitation?
[Lashay] The doctor...
told me that it was in my head and that...
I'm doing it to myself,
and I just started bawling.
[chuckles]
-Don't.
-Okay.
[Lisa] Well, that sounds just terrible
to feel like
nobody's listening to you
and nobody cares about what you think
and what your experience of this is.
Yeah.
[Jodelle] They basically just said,
"This is psychological. We're done."
Then I...
I had no support, so...
I want her to have somewhat of a...
of a life that is conducive
to her maybe having children.
-Whoa, dude. Slow down.
-[laughs]
To going to school.
Right.
I feel like I'm not the happy, bubbly
person that I used to be, and it sucks.
All right.
Lashay, if you would like to go lie down,
I'm done torturing you, okay?
-Have a good day.
-Thanks so much. Bye-bye.
[Lisa] In the two years that Lashay's
been sick, she's had some doctors
who were not gifted communicators,
who managed to make her feel blamed
for what was happening to her.
They just weren't able to explain
what they were trying to say.
I feel like I know how she feels.
It's terrible when...
news of any variety
is told badly.
I hope that the crowd can bring
some perspective to this case.
The question is,
will Lashay and her family
be willing to trust the online community?
"For the past two months,
the girl had been
unable to keep anything she ate
or drank in her system.
Just about any food, any drink,
no matter what it was,
seemed to come right back minutes
or sometimes hours after being consumed.
She'd lost nearly ten pounds.
It was strange and terrifying.
What do you think is going on here?"
My name is Lashay Hamblin.
I am 16 years old.
I read through the article
and I was puzzled.
It's a very complex situation.
It either sounds like someone bulimic...
It's like a mirror image.
It's exactly the same thing I had.
Try medical marijuana.
It's really very similar to exactly
what I went through when I was 17 and 18.
[woman] As soon as I read it, I've gone,
"That's exactly the same as my daughter,"
so she is pretty keen
to talk to her at some point.
There's the kind of classic triad
in medical school
which is called pooped,
puking and posturally hypotensive
and that's Addison's disease.
JFK had that.
There is a disease called
eosinophilic gastroenteritis.
One of the symptoms, depending
on where it's localized in the gut,
is regurgitation.
It sounds like a lot of this
was sort of directed by Mom.
I've been told on multiple occasions
by medical professionals,
"Oh, you just have a psychological issue.
It's all in your head.
You've got an eating disorder."
My doctor, he just basically told me,
like,
"Oh, it's psychosomatic." I'd be like,
"No. This is not what it is."
Then they take that as
"She's being defensive
because she's trying to hide something."
[Twitter tone]
When I showed the video
to three or four of our colleagues,
one of them actually burst out laughing.
I think that this crowdsourcing experiment
has brought many benefits,
many great things,
but I think in Lashay's case, we also get
to see some of the darker side of it.
I think we have to be very careful
about what we share.
We set off to do this experiment
to do good.
We have to make sure
that we don't do any harm.
[woman] My diagnosis for Lashay
was rumination syndrome.
It's kind of like a hiccup or a burp.
It's more of a reflex...
with how you're swallowing,
and so part of the food goes down
and part of the food comes up.
[man]
Then they mentioned rumination syndrome,
and I thought, "That certainly
sounds like it might be covering it."
[man 2] So my diagnosis is
cryptosporidiosis,
an apicomplexan parasite.
I thought of Baylisascaris,
a parasite of raccoons.
And if you ever wish to talk about worms,
just...
ring me up.
I've been wanting to discuss these things.
I was interested in this case
because my daughter had POTS.
One of the common things we found
in our POTS patients is the vomiting.
So I ended up going to the Mayo Clinic.
Everyone was kind of, like,
a different type of "POTS-y"
is what we called it,
so I was just a puker.
[Lisa] So the crowd came up
with three main suspects.
First, they think that maybe she had
a parasitic infection.
Second, she had POTS.
POTS is a problem of the nervous system.
The nerves that control the blood vessels
don't work right,
and so when you stand up,
they have a hard time getting
all the necessary blood up to the heart.
To compensate for that,
the heart beats faster.
So the symptoms that you get with POTS,
of dizziness and light-headedness
and sometimes even fainting,
they're similar to what Lashay has,
except that, in addition
to having a rapid heart rate,
her blood pressure drops as well.
And finally, the crowd came up
with one more possibility:
that she has rumination.
Rumination syndrome is a rare
chronic functional disorder
where people, after eating food,
automatically spit it up
or regurgitate it.
It's sometimes lumped in
with eating disorders like bulimia,
but it's not like that
because it's not deliberate.
It's not intentional.
People who have rumination syndrome
can't make it happen.
My advice for Lashay
is just don't give up.
You're not alone. Hang in there.
Be open to any diagnosis and maybe...
Have an optimistic viewpoint
as much as you can.
Don't ever give up, Lashay.
There are people trying hard to help you.
[Lisa] Lashay's story prompted
so many people to write in.
It was really...
an explosion.
And I've come here.
Because they've had such such a rough road
with so many of the doctors
that they've interacted with,
the family feels like
they have to take on the burden
of making decisions on this
really complicated medical problem
because they don't have anybody
they know and trust right now.
I'm in sort of a strange position, really.
I'm not their doctor.
I'm functioning as...
a consultant, so it's tricky.
-[Lisa] 2,600 people wrote in.
-[Jodelle] Wow!
So...
You know, that's amazing.
[Jodelle] That is. Yeah.
I think it's great. I think that,
you know, any help that we can get,
other people can get is great, so...
[Lashay] But I'm excited.
[Jodelle] Hopeful, excited, yeah.
And I appreciate...
all of the work that you have done
to get us here
because I need help from the crowdsourcing
to move forward
in a direction
that hasn't been presented yet.
[Lisa] I'm happy to do it 'cause,
you know,
it's something
that I'm interested in also.
Okay. So...
I wanted to show you some of the videos
that people sent for you.
-Wow.
-Okay.
My name is Mike McGuill.
I'm a veterinarian.
I think that raccoon roundworm
is a possibility here
'cause it could potentially cause nausea
and vomiting
-as she describes.
-[Lisa] So...
Roundworm. I think...
Have you all been tested
-for a lot of those parasites?
-[Jodelle] We've been tested a lot.
My theory is there is an underlying cause
that is parasitic,
but we haven't really been able
-to find a specific parasite yet.
-[Lisa] Right.
I think your stool has been
-very well examined.
-[laughter]
-Yeah.
-[Jodelle] Yes.
Right before my senior year
of high school,
um, I had this stomach bug,
and then I just never stopped throwing up.
So I ended up going to the Mayo Clinic.
Most of the people who were there,
probably 70% also had POT syndrome.
After the Mayo Clinic, my biggest fear of,
like, waking up one day
and throwing up hasn't happened at all.
[Lisa] A lot of people thought that
POTS can account for a lot.
[Jodelle] We've gone through all of that.
We had been treating the POTS
-and nothing was helping.
-Right.
But I guess my portion was,
is there an underlying cause
that is pushing this, you know?
I am Davi Pressman. I am 17.
So I think that she might have
rumination syndrome,
which is what I have.
[woman]
She probably had a virus or something
that made her throw up,
and then something went haywire
with her neuro pathways--
It just kinda rewired my nerves.
-It rewired her neuro pathways.
-Yeah.
-[Lisa] So what do you think, Lashay?
-I don't know.
[Jeff] Were you ready for that question?
No.
[chuckles]
Like, when I was in the hospital
the second time,
the doctor comes in
and she told me that it was rumination,
and I'm gonna have to deal with it
my whole entire life.
Like, there's no fix, there's no nothing.
I was, like, devastated 'cause everyone...
thought it was in my head,
it was an eating disorder,
it was this psychological thing,
like, and I just--
[Jodelle] I didn't like the presentation,
and that's what I said to them.
I wasn't happy
with how they presented it to her.
They could have come to us first,
presented it to us,
and then we could have gone in
and presented it to her
in a much different way.
[Lisa] Well, the diagnosis of rumination,
you were tested for that.
I think it's called an M spike...
which is the pressure
right at that lower esophageal sphincter,
um, which is strongly suggestive
of rumination.
Do you wanna talk to any of these people?
-[Lisa] You.
-Well, like, I don't really know...
My mom... Since I was so young, like,
my mom took control of everything.
-[Jodelle] Not everything.
-[Lashay] Everything.
Sometimes I don't even know
what medications I'm on.
[Jodelle] It would be interesting
to watch more of the videos
to see if there's more connection
for Lashay.
I don't know if she had a connection
with those two girls.
As for, you know,
me wanting to speak with anyone,
I don't know if I can garner
much information from...
I mean--
[Madison] What would be the harm
in talking to those people? It might help.
Okay.
Well, like, you're putting this out there
that you need help
and that you're trying to look for things,
and you have people
that are knowledgeable and I just...
Just talk to people. What's the harm?
I didn't say there was any harm.
[Lisa]
Anything surprising to you in this crowd?
No. Uh-uh.
No.
[Lisa] I know that you're still thinking
that she's got a parasite and--
-I just--
-[Lisa] I understand
how you might feel that way.
It seems unlikely to me, you know.
I mean, bacteria and flukes and amoeba,
they're like sharks.
They're moving forward or they're dead.
[Jodelle] And I agree,
but for some odd reason,
I keep coming back to it in my head,
and I can't ignore it. It's one of those,
like an intuition, and I think
I haven't always listened to it.
[Lisa] I think that Lashay's mom
wants to figure out why this happened,
and I get that.
But why this happened,
like if it was caused by a parasite,
doesn't change
what you have to do to fix it.
The one diagnosis of rumination syndrome
brings together the top three diagnoses
brought forth by the crowd.
First, it's possible that she picked up
a parasite or some kind of infection
while she was in Costa Rica
that triggered the rumination syndrome
in the first place.
She has this rumination syndrome
where she can't keep anything down,
and because she can't keep anything down,
she has dehydration,
which gives her these POTS-like symptoms.
Some of the people in the crowd
recommended
Nationwide Children's Hospital.
I'm Marc Levitt. I'm a physician.
I'm a pediatric surgeon
at Nationwide Children's Hospital.
Gastric emptying problems,
rumination syndromes,
those are all very medically managed.
Lashay, we wanna help you,
and we won't rest
until we can fix your problem.
I'd be in the doctor's office throwing up,
and they're like,
"We don't know what's wrong."
Until one of them suggested
it might be rumination syndrome,
and you found Nationwide.
-[Abigail] Yeah.
-[Albert] They had a really
in-depth program there
that deals with treating it.
So I went and they fixed it.
[Lisa] This rumination clinic has had
a lot of success
in helping adolescents retrain their body
to keep them from regurgitating.
They tell you, though,
that you have to accept the diagnosis
for this to work.
Whoever that poor schmuck was
who told them
about rumination syndrome the first time,
they presented it
like it was all in her head,
when really if they understood
that it's actually a physical problem,
then it would be a lot easier
for her to accept it.
[Lisa] You know, it seems to me that...
This is my set of priorities,
so everybody gets to have an opinion.
It seems to me that of all the things
that you have, the thing that is...
the most dangerous
is this port that you have, you know.
It goes directly to your heart,
and if a germ were to get in there...
toast, you know?
I mean, it would be devastating.
It could kill you.
For me, the priority would be
to try to figure out
how to manage the vomiting.
The vomiting thing
is what makes you need that port.
So, I spent a lot of last night
looking at Columbus Nationwide Hospital.
It seems like it's a successful program.
Of course, I stayed up in the middle
of the night researching.
Now that I'm back in the swing of things,
I'll be up 'til 4:00 a.m.
every morning now.
I see the benefits,
but as a mother,
I can also see drawbacks to the program.
The treatment that she tried here,
the breathing through the diaphragm
makes her more sick.
I definitely think
that she has rumination.
The way Lashay was told about it
was so wrong,
but it seems like just because
some doctor made a mistake,
it shouldn't take...
what is the most likely diagnosis
off the table for Lashay.
You know, I think that that doctor's
presentation really poisoned this idea,
and it makes me sad.
I think it's just hard because everyone...
Like, every doctor has their diagnosis,
and we've been told... Like,
I've been diagnosed, like, with a lot.
[Lisa] The treatments that you've tried
here haven't worked.
Not doing anything...
also has risks, right?
[Jodelle] Will I do nothing? No.
It's just not in my personality.
It's not who I am.
But there's a point where you can only put
yourself through, and her through,
these rabbit holes because, again,
it could be rumination.
-[Lisa] Yeah. Okay.
-Could.
-[Lisa] Yeah.
-And that's the--
[Lisa] She's already been diagnosed
with it. That's what that test showed.
-[Jodelle] Right.
-[Lisa] And everything else,
-[Lisa] except for POTS.
-[Jodelle] But everything else has been--
[Lisa] Negative.
[Lisa] I'm just saying that this port,
this is the most important problem
that she has,
by both of y'all's assessment
and mine too.
I know that I'm just one more doctor
giving you my opinion,
but I'm probably
the only one of your doctors
who's read your entire medical record.
I've been very appreciative
of all the work
and the effort that you've put into this.
I mean, that's been huge for us.
And I will take into consideration
what you have said,
but I have to look it through, and...
and I have to make a decision with Lashay.
And am I gonna jump tomorrow? No.
[laughs]
Am I gonna put her in a program tomorrow?
No.
A month? Maybe, you know?
Two months? Maybe for sure.
I don't... You know?
Then maybe not.
It's really tough for them,
and I feel for them,
but this is Lashay's life,
and yet her mother, Jodelle,
ran the conversation, really.
I think her principal reaction was...
almost defensive.
Jodelle worried...
about making a decision
that might cause harm to her daughter.
I totally get that,
and yet that is what we all have to do.
Every decision we make...
about a medical option has the potential
to cause injury,
even the decision not to do anything.
I left Utah feeling pretty discouraged.
I felt like we really hadn't made
very much progress,
that we were really at a standstill,
so I was surprised
when I got a call from Jodelle
asking to get more information
about Nationwide.
So I immediately hooked her up
with this young man
who had been to Nationwide and whose story
was so similar to Lashay's.
[Lashay] Hi.
How are you?
[man] Doing well. How are you feeling?
-Just ate, so...
-That's good.
...might come up, might not,
so at this point, I don't know.
So, um,
I was just wondering
about your experience with Nationwide.
There's nothing I could say
that was bad about them.
They did fantastic work.
It's an intensive program.
You get there, they set you up,
they get you on IVs
and get NG feedings tubes in,
all that good stuff.
Because at first,
you're not gonna be eating enough food
while you're there
the first couple of days
to make the number of calories you need.
I'm personally not set on rumination
just because of my past with...
-Right.
...being told I've had rumination.
Well, what happened to me
when I was first diagnosed,
they were like, "It might be rumination
syndrome or something else,"
and then,
"Oh, no, it's not rumination syndrome."
And then two years later, they were like,
"Oh, it actually is rumination syndrome."
I went to Nationwide and they were like,
"Yeah, it really is," and they fixed it.
-Did they do any breathing or--
-Yeah.
For me, a lot of diaphragmatic breathing
was what helped a lot.
The first time I was shown it and
taught it in a couple of other hospitals,
it didn't work, didn't help.
Then in conjunction with the stuff there,
it actually did work and help.
So just because you've tried it before,
it didn't work in the past--
I was looking for more negative things
'cause it's like--
-I wish I could give you something.
-I know.
And you've been good,
like, ever since Nationwide,
you haven't had any issues?
With what they've taught me,
I am able to...
-just deal with it and move through.
-Okay. This has helped.
-I really appreciate it.
-I hope you get better. I really do.
Thank you.
It's amazing that they helped him.
I think it's a great program.
It's a great option.
I'm just still, like...
nervous and scared
to, like, not get the same results.
I don't wanna get my hopes up
because my past has screwed with me,
and that's made me
very cautious and scared.
It comes down to where you're almost 18
and you will be making
these decisions for yourself.
There's a possibility
that this might work,
but, again, you have to be on board.
You have to be willing to do it.
I would love to try it out,
but when he said the feeding tube...
-Yeah.
-...that scared me,
and with rumination, that scared me.
I've had a very bad...
like, very bad experience with that.
Well, in reality,
not everybody's gonna have a perfect, um,
a perfect experience like he did.
I think you've been through
so many different things.
You're not really gonna be able to go in
thinking this is 100%.
But they don't really allow
anybody in the program
that basically isn't going to pass it.
-Yeah.
-So if they accept you in it,
they say, "Hey, I think this is
a 70% chance that you'll do well in this,"
then there is enough of a percentage
and enough of a positive that it's...
-it's worth trying if it's viable.
-Yeah.
[Jodelle] When you get into this journey,
you get sick of the...
direction of more drugs,
more surgeries, more this, more that.
And I think Lashay and I have come
to an agreement
that we won't do anything invasive.
So when rumination was presented,
I did a little bit more research
on my own,
contacting one of the nurses,
and I basically kinda
drilled her on some of the things
that were my questions and my...
my concerns.
They don't look at it
as a psychosomatic issue.
They look it more as a functional issue
with the brain and the gut connection.
That's basically why I'm on board
to try the rumination program.
When we started this experiment,
I think there was some sort
of change in Lashay.
She finally accepted the fact
that she is sick.
It's giving her a will
to want to still fight...
and search for things that will help her.
It's given us more hope.
[Lashay] No, he has a red head
on his stick, but--
-Oh, I was like--
-[Lashay] No, he's not red.
-Byron has red hair.
-[Lashay] Yeah, I know.
-Parker does not.
-[Lashay] Does not.
[Lashay] I think this experience helped.
I think we were kind of, like, lost.
I was sick of doctors.
I was sick of medications.
I just wanted...
I was stable with my port.
I think I was done.
-[cheering]
-Awesome.
[Lashay] Hopefully...
[clears throat]
...I can share, some, like...
share my experience
with people 'cause it might help them.
[woman] Can he hear us if we yell?
-You can yell in my ear.
-Wait. No, I was gonna say...
[Lashay]
I think we've made progress in me.
I'm glad that I chose to do this.
The crowdsourcing might lead
to a solution for me.
I'm guessing that's him?
-Yeah.
-Randy.
[laughing]
[Lisa] For a while, I wasn't sure
that my crowdsourcing experiment
was gonna be successful
for Lashay and her family.
Luckily, the crowd was able to gain
Lashay's trust, and that's fantastic.
So now she has a diagnosis,
and it's up to her,
as she moves into adulthood,
to find the treatment that's gonna work.
It's something I learned very early on
in my career as a doctor,
that getting a patient's trust
is essential before you can make
any progress forward.
Our next patient
has a potentially fatal condition
that's put his life on hold.
We all get déjà vu,
but when Matt gets it, his heart stops,
and his doctors don't know why.
[retching]
[woman] You okay? Need some air?
[retching and vomiting]
-[woman] Well, his heart stops.
-[woman 2] Can you get help?
[monitor beeping]
[Matt] I got lightheaded and then...
passed out and woke up and then vomited.
It's just very stressful.
And if I flatlined last time,
I could flatline again any time,
and it could be permanent.
-Can I tell you a really personal story?
-[man] Yeah.
When I was 19,
I came home for Christmas
and then went back to college.
And while I was there, my mother was sick.
My father took her to the hospital.
They took her back,
and then the doctor came out.
He came up to my father and he said,
"I'm sorry. She's gone."
My father said,
"Oh, she can't have gone.
I have the car keys".
And the doctor said, "No,
you don't understand.
She's gone."
He couldn't bring himself to say
what he really meant.
And it took my father
a ridiculously long time
to hear what the doctor couldn't say:
that my mother had died.
That is an important reason
why I went to medical school.
I thought,
surely I can do a better job than that.
Surely people deserve...
better than that.
[man] Ready, guys? Okay.
Our dear heavenly Father,
we pray that thy spirit will be
with all of us
and especially Lashay in her time of need.
I say these things
in the name of Jesus Christ. Amen.
Amen.
[indistinct conversation]
Eleven or 11:30 down there 'cause
it's supposed to snow at ten tomorrow.
-[woman] Okay.
-[woman 2] It's supposed to rain.
[woman 2] I know.
[woman] Okay?
[woman]
Is it still supposed to snow, Jeff?
Friday night and Saturday?
[Jeff] More so on Saturday.
[woman]
Somewhere like Zions or just somewhere--
[woman 2] You what's really funny?
I haven't been somewhere where it's warm
or somewhere where it's like...
[woman 3 groans]
-[indistinct conversation]
-[woman 3 groans]
[Jeff] Do you need a napkin?
[woman 3] My body is going through
something no one can really figure out.
[indistinct conversation]
-[woman] Are you okay?
-[Jeff] Want me to clean it up?
Like, after I eat or...
[gulps]
[indistinct conversation]
[woman 2] Drink this one.
[Lashay] I don't know why,
but it just turns my stomach
in a way where I just...
can't handle it.
[water sloshing]
Ever since this has started,
I haven't kept fluids down.
All the doctors said, like,
"I want you on a feeding tube,"
but I'm kind of...
I still want control over,
like, what I eat. I still wanna eat.
I still wanna have that.
[clears throat]
[indistinct conversation]
[Lashay] And so...
whenever I throw up, I keep on eating...
just so I can get some calories in
and just have something in my stomach.
[indistinct conversation]
[woman]
We try not to make it a focal point.
We try and just move on with our lives,
have somewhat of normality for her.
Even though we go through this,
-we don't focus on--
-[Lashay] I get upset if they focus on me
and if they're like, "Are you okay?"
'Cause after two years...
of every single day, every single...
[Lashay retches]
[woman] It's a fine line, you know,
-but there's not a lot they can do--
-[Jodelle] They don't know what to do.
[Lashay]
A lot of the doctors are just like,
"We can't help you.
Go find a different person to help you."
I'm, like, to that point
where it's just, like,
is anyone gonna help me?
[Lisa] On the surface,
you might think that this is
classic teenage bulimia,
but after reviewing her records,
I'm pretty sure
that is not what's going on here.
One thing that was clear
is that she didn't have the kind
of nutritional abnormalities that you see
with self-inflicted vomiting.
When a teenage girl shows up
to a hospital
with a complaint of constant vomiting,
the medical world far too often
just assumes
that the girl has an eating disorder.
So I'm hoping the crowd
will be more open minded
in their diagnosis.
She's 17 years old.
She needs to have a teenage life.
That's what we owe her.
[Lashay] So today I am gonna go to school.
This is a really rare thing that I do.
I can't really go to school.
So, normally, I do home schooling,
so I do packets.
I try to do as much as I can,
and then I circle the ones
that I have questions on,
and then I will go to a teacher.
I just wanna get an education
because I know,
again, a lot of people
in my position don't.
I try to do my makeup every day.
When I'm pale...
I don't like when people are,
"Oh, you look really sick.
Like, I can tell
you don't feel good today."
So when I do put makeup on,
I do feel like it's an armor
and it's like a protection.
When I got sick, I lost a lot of friends,
so I do feel a little isolated.
The worst part
about this is I can't have
the connections I wish
I could have with people.
♪ Happy birthday to me ♪
♪ Happy birthday, dear Lashay
Happy birthday to me ♪
Before I was sick, I was happy, bubbly...
Okay. One, two.
I had a very, like, active social life.
I would always be out with friends
and want to know more people.
I was on the high school soccer team.
And my family loved to adventure.
[woman] Oh, wow.
The tail's, like, wrapping around you now.
Hi, America.
When we went to Costa Rica,
we did a ton of stuff.
My favorite was probably
the zip lining.
But then our second day in Costa Rica,
we went to Manuel Antonio,
and it's a national park.
We go and we see this raccoon,
and the raccoon came towards us,
bypassed my sister and went straight
towards my foot and grabbed onto it.
It broke the skin.
Within two days of returning home,
she started to have symptoms
of vomiting, headache, neck pain
and stomach pain.
Our doctor was like,
"You need to go the emergency room.
Get the rabies vaccination right now."
[nurse] All right. One, two, three.
But then everything got really bad.
[Jodelle] Are you okay?
That hurt.
[groans]
-[groans]
-[indistinct conversation]
[moaning]
Prior to, you know, 2014, this child lived
an active, normal, wonderful life,
and then it just switched.
Woo-hoo!
[Lisa] This whole story started
with Lashay's close encounter
with this animal,
and that's maybe an important clue.
That or maybe even the rabies shot.
I wonder whether just the trauma
associated with these
two terrible experiences
could have some role
in what happened to her afterwards.
[groans]
[Lashay] After Costa Rica,
that's when I started throwing up
and had all these symptoms.
When I eat, it's hard for me
to move around.
I can be hunched over, like,
for three hours,
and I have really sensitive eyes.
I can't handle light very well.
In ways, it feels like my head
is literally about to explode.
[woman] All right, sweetie. Tell me,
have you been able to drink or anything
-in the last few days?
-No.
Are you able to urinate?
No, not really.
Make sure her health care provider
is aware of that.
We just don't want
any organs shutting down.
[Lisa] Because Lashay has a hard time
holding down food or drink,
she and her doctors decided
to insert a port.
Now, a port is intravenous access
that goes directly into your heart.
It's an effective way to deliver fluids,
but it's also an extremely effective way
to deliver bacteria
to the most sensitive part of your body,
and so any kind of infection
can be life threatening.
[nurse] All right, my dear. Are you ready?
There's blood,
so we're in.
[Jodelle]
A lot of doctors are very leery of ports,
but it was hard
getting enough hydration in her
that she wasn't falling over or fainting.
As a mother,
that's a hard pill to swallow,
to say, " Okay, I'm going to do this,"
because...
it's all trial and error.
And your error can be,
you know, life threatening.
One of the medications that she was on,
she was on the kitchen floor...
Sorry.
...trying to vomit.
[tearfully] She couldn't open her mouth.
Um...
Turns out the side effects of one of
the medications that she had been put on
was lockjaw.
Now, why would you give a child
that vomits constantly
a medication
that a side effect is lockjaw?
[breathing heavily]
[Jodelle] You know, at some point in time,
you know,
you're not as trusting,
and you're not as,
"Okay, I will do whatever you say."
[coughs]
[Jeff] I get very angry
'cause we do look for the health care
to fix our problems.
After two and a half years now,
still no answers.
We're left to kind of fend for ourselves
and try to figure it out.
[Lashay] Grab a ball.
Go get it!
[Lisa] Going through Lashay's records,
I see that she started seeing Dr. Coleby,
a doctor who thought
that she had developed
a leak in her cerebral spinal fluid
and that caused her
to have headaches and light-headedness.
Good girl!
A blood patch is
the way you patch a CSF leak.
Blood is injected into the sac
surrounding the spinal cord.
The blood goes to where the leak is,
clots off and blocks the leak.
It's a very invasive procedure.
Um, so Lashay Hamblin is 15.
I met her when she was 15 years old.
She's a 16-year-old girl, um,
who's suffering from intractable nausea,
vomiting, abdominal pain,
dizziness, headaches.
Um, I have a high clinical suspicion
that she has a CSF leak.
It can happen often after a trauma
or a traumatic event,
like if she was coughing very hard,
or vomiting, like in her case.
A CSF leak can be difficult
if you don't know where it's at,
and half the time, we don't know.
The current consensus amongst the experts
is to go ahead and do a blood patch,
and every time we do that,
we have a 30% chance of it working.
So, the fact that
it didn't work the first time
doesn't mean it wouldn't work.
The challenges I have with this family
is they have a low trust
of the medical community,
and when I propose things that are
more invasive, that are higher risk,
they're less likely to wanna explore that.
[Jodelle] After the blood patch,
she couldn't move out of the bed
for about six weeks.
I could not get out of bed,
and when I did, I would fall to the ground
just because my body was in so much pain.
[moaning]
What has been caused from those procedures
has been painful
and, at times,
it's worse after than before.
I've given them options
and they don't like my options...
quite frankly.
The one thing they know works
is IV fluids,
and there's a lot of pressure for me
to just prescribe IV fluids
on a daily basis.
What we know is
that's not a long-term solution.
That is definitely a band-aid.
A port placement is not a small deal,
and there are patients who have died
from those because of infections.
She has a very real problem.
I believe that Lashay's problems
are legit.
The struggle they're having is how do they
interact with the medical community
and find a solution that is agreeable
to their values and their standards?
And I think their standards may be
a little bit too high
for the type of problem she has.
I think you can't fly blindly.
I have to protect her
and siphon through some of all these,
"Oh, you've gotta do this.
Oh, you've gotta do that."
[Jeff] You've gotta think about
-the long term side effects--
-Damage.
Damage that can happen, that can occur.
[Jodelle] Is it worth it?
No one's really giving us
that hope that it's worth it anymore.
[video call ringtone]
[Lisa] So let's start with you, Lashay.
Tell me what happened from the beginning.
Take as much time as you need.
[Lashay] Okay.
I got bit by a raccoon.
I started throwing up,
and I wasn't getting any better,
so we went to--
-They admitted you.
-They admitted me into the hospital.
-They tried to figure--
-And no one knew what was wrong.
So, what did you think...
What were they saying to you
about the cause of your regurgitation?
[Lashay] The doctor...
told me that it was in my head and that...
I'm doing it to myself,
and I just started bawling.
[chuckles]
-Don't.
-Okay.
[Lisa] Well, that sounds just terrible
to feel like
nobody's listening to you
and nobody cares about what you think
and what your experience of this is.
Yeah.
[Jodelle] They basically just said,
"This is psychological. We're done."
Then I...
I had no support, so...
I want her to have somewhat of a...
of a life that is conducive
to her maybe having children.
-Whoa, dude. Slow down.
-[laughs]
To going to school.
Right.
I feel like I'm not the happy, bubbly
person that I used to be, and it sucks.
All right.
Lashay, if you would like to go lie down,
I'm done torturing you, okay?
-Have a good day.
-Thanks so much. Bye-bye.
[Lisa] In the two years that Lashay's
been sick, she's had some doctors
who were not gifted communicators,
who managed to make her feel blamed
for what was happening to her.
They just weren't able to explain
what they were trying to say.
I feel like I know how she feels.
It's terrible when...
news of any variety
is told badly.
I hope that the crowd can bring
some perspective to this case.
The question is,
will Lashay and her family
be willing to trust the online community?
"For the past two months,
the girl had been
unable to keep anything she ate
or drank in her system.
Just about any food, any drink,
no matter what it was,
seemed to come right back minutes
or sometimes hours after being consumed.
She'd lost nearly ten pounds.
It was strange and terrifying.
What do you think is going on here?"
My name is Lashay Hamblin.
I am 16 years old.
I read through the article
and I was puzzled.
It's a very complex situation.
It either sounds like someone bulimic...
It's like a mirror image.
It's exactly the same thing I had.
Try medical marijuana.
It's really very similar to exactly
what I went through when I was 17 and 18.
[woman] As soon as I read it, I've gone,
"That's exactly the same as my daughter,"
so she is pretty keen
to talk to her at some point.
There's the kind of classic triad
in medical school
which is called pooped,
puking and posturally hypotensive
and that's Addison's disease.
JFK had that.
There is a disease called
eosinophilic gastroenteritis.
One of the symptoms, depending
on where it's localized in the gut,
is regurgitation.
It sounds like a lot of this
was sort of directed by Mom.
I've been told on multiple occasions
by medical professionals,
"Oh, you just have a psychological issue.
It's all in your head.
You've got an eating disorder."
My doctor, he just basically told me,
like,
"Oh, it's psychosomatic." I'd be like,
"No. This is not what it is."
Then they take that as
"She's being defensive
because she's trying to hide something."
[Twitter tone]
When I showed the video
to three or four of our colleagues,
one of them actually burst out laughing.
I think that this crowdsourcing experiment
has brought many benefits,
many great things,
but I think in Lashay's case, we also get
to see some of the darker side of it.
I think we have to be very careful
about what we share.
We set off to do this experiment
to do good.
We have to make sure
that we don't do any harm.
[woman] My diagnosis for Lashay
was rumination syndrome.
It's kind of like a hiccup or a burp.
It's more of a reflex...
with how you're swallowing,
and so part of the food goes down
and part of the food comes up.
[man]
Then they mentioned rumination syndrome,
and I thought, "That certainly
sounds like it might be covering it."
[man 2] So my diagnosis is
cryptosporidiosis,
an apicomplexan parasite.
I thought of Baylisascaris,
a parasite of raccoons.
And if you ever wish to talk about worms,
just...
ring me up.
I've been wanting to discuss these things.
I was interested in this case
because my daughter had POTS.
One of the common things we found
in our POTS patients is the vomiting.
So I ended up going to the Mayo Clinic.
Everyone was kind of, like,
a different type of "POTS-y"
is what we called it,
so I was just a puker.
[Lisa] So the crowd came up
with three main suspects.
First, they think that maybe she had
a parasitic infection.
Second, she had POTS.
POTS is a problem of the nervous system.
The nerves that control the blood vessels
don't work right,
and so when you stand up,
they have a hard time getting
all the necessary blood up to the heart.
To compensate for that,
the heart beats faster.
So the symptoms that you get with POTS,
of dizziness and light-headedness
and sometimes even fainting,
they're similar to what Lashay has,
except that, in addition
to having a rapid heart rate,
her blood pressure drops as well.
And finally, the crowd came up
with one more possibility:
that she has rumination.
Rumination syndrome is a rare
chronic functional disorder
where people, after eating food,
automatically spit it up
or regurgitate it.
It's sometimes lumped in
with eating disorders like bulimia,
but it's not like that
because it's not deliberate.
It's not intentional.
People who have rumination syndrome
can't make it happen.
My advice for Lashay
is just don't give up.
You're not alone. Hang in there.
Be open to any diagnosis and maybe...
Have an optimistic viewpoint
as much as you can.
Don't ever give up, Lashay.
There are people trying hard to help you.
[Lisa] Lashay's story prompted
so many people to write in.
It was really...
an explosion.
And I've come here.
Because they've had such such a rough road
with so many of the doctors
that they've interacted with,
the family feels like
they have to take on the burden
of making decisions on this
really complicated medical problem
because they don't have anybody
they know and trust right now.
I'm in sort of a strange position, really.
I'm not their doctor.
I'm functioning as...
a consultant, so it's tricky.
-[Lisa] 2,600 people wrote in.
-[Jodelle] Wow!
So...
You know, that's amazing.
[Jodelle] That is. Yeah.
I think it's great. I think that,
you know, any help that we can get,
other people can get is great, so...
[Lashay] But I'm excited.
[Jodelle] Hopeful, excited, yeah.
And I appreciate...
all of the work that you have done
to get us here
because I need help from the crowdsourcing
to move forward
in a direction
that hasn't been presented yet.
[Lisa] I'm happy to do it 'cause,
you know,
it's something
that I'm interested in also.
Okay. So...
I wanted to show you some of the videos
that people sent for you.
-Wow.
-Okay.
My name is Mike McGuill.
I'm a veterinarian.
I think that raccoon roundworm
is a possibility here
'cause it could potentially cause nausea
and vomiting
-as she describes.
-[Lisa] So...
Roundworm. I think...
Have you all been tested
-for a lot of those parasites?
-[Jodelle] We've been tested a lot.
My theory is there is an underlying cause
that is parasitic,
but we haven't really been able
-to find a specific parasite yet.
-[Lisa] Right.
I think your stool has been
-very well examined.
-[laughter]
-Yeah.
-[Jodelle] Yes.
Right before my senior year
of high school,
um, I had this stomach bug,
and then I just never stopped throwing up.
So I ended up going to the Mayo Clinic.
Most of the people who were there,
probably 70% also had POT syndrome.
After the Mayo Clinic, my biggest fear of,
like, waking up one day
and throwing up hasn't happened at all.
[Lisa] A lot of people thought that
POTS can account for a lot.
[Jodelle] We've gone through all of that.
We had been treating the POTS
-and nothing was helping.
-Right.
But I guess my portion was,
is there an underlying cause
that is pushing this, you know?
I am Davi Pressman. I am 17.
So I think that she might have
rumination syndrome,
which is what I have.
[woman]
She probably had a virus or something
that made her throw up,
and then something went haywire
with her neuro pathways--
It just kinda rewired my nerves.
-It rewired her neuro pathways.
-Yeah.
-[Lisa] So what do you think, Lashay?
-I don't know.
[Jeff] Were you ready for that question?
No.
[chuckles]
Like, when I was in the hospital
the second time,
the doctor comes in
and she told me that it was rumination,
and I'm gonna have to deal with it
my whole entire life.
Like, there's no fix, there's no nothing.
I was, like, devastated 'cause everyone...
thought it was in my head,
it was an eating disorder,
it was this psychological thing,
like, and I just--
[Jodelle] I didn't like the presentation,
and that's what I said to them.
I wasn't happy
with how they presented it to her.
They could have come to us first,
presented it to us,
and then we could have gone in
and presented it to her
in a much different way.
[Lisa] Well, the diagnosis of rumination,
you were tested for that.
I think it's called an M spike...
which is the pressure
right at that lower esophageal sphincter,
um, which is strongly suggestive
of rumination.
Do you wanna talk to any of these people?
-[Lisa] You.
-Well, like, I don't really know...
My mom... Since I was so young, like,
my mom took control of everything.
-[Jodelle] Not everything.
-[Lashay] Everything.
Sometimes I don't even know
what medications I'm on.
[Jodelle] It would be interesting
to watch more of the videos
to see if there's more connection
for Lashay.
I don't know if she had a connection
with those two girls.
As for, you know,
me wanting to speak with anyone,
I don't know if I can garner
much information from...
I mean--
[Madison] What would be the harm
in talking to those people? It might help.
Okay.
Well, like, you're putting this out there
that you need help
and that you're trying to look for things,
and you have people
that are knowledgeable and I just...
Just talk to people. What's the harm?
I didn't say there was any harm.
[Lisa]
Anything surprising to you in this crowd?
No. Uh-uh.
No.
[Lisa] I know that you're still thinking
that she's got a parasite and--
-I just--
-[Lisa] I understand
how you might feel that way.
It seems unlikely to me, you know.
I mean, bacteria and flukes and amoeba,
they're like sharks.
They're moving forward or they're dead.
[Jodelle] And I agree,
but for some odd reason,
I keep coming back to it in my head,
and I can't ignore it. It's one of those,
like an intuition, and I think
I haven't always listened to it.
[Lisa] I think that Lashay's mom
wants to figure out why this happened,
and I get that.
But why this happened,
like if it was caused by a parasite,
doesn't change
what you have to do to fix it.
The one diagnosis of rumination syndrome
brings together the top three diagnoses
brought forth by the crowd.
First, it's possible that she picked up
a parasite or some kind of infection
while she was in Costa Rica
that triggered the rumination syndrome
in the first place.
She has this rumination syndrome
where she can't keep anything down,
and because she can't keep anything down,
she has dehydration,
which gives her these POTS-like symptoms.
Some of the people in the crowd
recommended
Nationwide Children's Hospital.
I'm Marc Levitt. I'm a physician.
I'm a pediatric surgeon
at Nationwide Children's Hospital.
Gastric emptying problems,
rumination syndromes,
those are all very medically managed.
Lashay, we wanna help you,
and we won't rest
until we can fix your problem.
I'd be in the doctor's office throwing up,
and they're like,
"We don't know what's wrong."
Until one of them suggested
it might be rumination syndrome,
and you found Nationwide.
-[Abigail] Yeah.
-[Albert] They had a really
in-depth program there
that deals with treating it.
So I went and they fixed it.
[Lisa] This rumination clinic has had
a lot of success
in helping adolescents retrain their body
to keep them from regurgitating.
They tell you, though,
that you have to accept the diagnosis
for this to work.
Whoever that poor schmuck was
who told them
about rumination syndrome the first time,
they presented it
like it was all in her head,
when really if they understood
that it's actually a physical problem,
then it would be a lot easier
for her to accept it.
[Lisa] You know, it seems to me that...
This is my set of priorities,
so everybody gets to have an opinion.
It seems to me that of all the things
that you have, the thing that is...
the most dangerous
is this port that you have, you know.
It goes directly to your heart,
and if a germ were to get in there...
toast, you know?
I mean, it would be devastating.
It could kill you.
For me, the priority would be
to try to figure out
how to manage the vomiting.
The vomiting thing
is what makes you need that port.
So, I spent a lot of last night
looking at Columbus Nationwide Hospital.
It seems like it's a successful program.
Of course, I stayed up in the middle
of the night researching.
Now that I'm back in the swing of things,
I'll be up 'til 4:00 a.m.
every morning now.
I see the benefits,
but as a mother,
I can also see drawbacks to the program.
The treatment that she tried here,
the breathing through the diaphragm
makes her more sick.
I definitely think
that she has rumination.
The way Lashay was told about it
was so wrong,
but it seems like just because
some doctor made a mistake,
it shouldn't take...
what is the most likely diagnosis
off the table for Lashay.
You know, I think that that doctor's
presentation really poisoned this idea,
and it makes me sad.
I think it's just hard because everyone...
Like, every doctor has their diagnosis,
and we've been told... Like,
I've been diagnosed, like, with a lot.
[Lisa] The treatments that you've tried
here haven't worked.
Not doing anything...
also has risks, right?
[Jodelle] Will I do nothing? No.
It's just not in my personality.
It's not who I am.
But there's a point where you can only put
yourself through, and her through,
these rabbit holes because, again,
it could be rumination.
-[Lisa] Yeah. Okay.
-Could.
-[Lisa] Yeah.
-And that's the--
[Lisa] She's already been diagnosed
with it. That's what that test showed.
-[Jodelle] Right.
-[Lisa] And everything else,
-[Lisa] except for POTS.
-[Jodelle] But everything else has been--
[Lisa] Negative.
[Lisa] I'm just saying that this port,
this is the most important problem
that she has,
by both of y'all's assessment
and mine too.
I know that I'm just one more doctor
giving you my opinion,
but I'm probably
the only one of your doctors
who's read your entire medical record.
I've been very appreciative
of all the work
and the effort that you've put into this.
I mean, that's been huge for us.
And I will take into consideration
what you have said,
but I have to look it through, and...
and I have to make a decision with Lashay.
And am I gonna jump tomorrow? No.
[laughs]
Am I gonna put her in a program tomorrow?
No.
A month? Maybe, you know?
Two months? Maybe for sure.
I don't... You know?
Then maybe not.
It's really tough for them,
and I feel for them,
but this is Lashay's life,
and yet her mother, Jodelle,
ran the conversation, really.
I think her principal reaction was...
almost defensive.
Jodelle worried...
about making a decision
that might cause harm to her daughter.
I totally get that,
and yet that is what we all have to do.
Every decision we make...
about a medical option has the potential
to cause injury,
even the decision not to do anything.
I left Utah feeling pretty discouraged.
I felt like we really hadn't made
very much progress,
that we were really at a standstill,
so I was surprised
when I got a call from Jodelle
asking to get more information
about Nationwide.
So I immediately hooked her up
with this young man
who had been to Nationwide and whose story
was so similar to Lashay's.
[Lashay] Hi.
How are you?
[man] Doing well. How are you feeling?
-Just ate, so...
-That's good.
...might come up, might not,
so at this point, I don't know.
So, um,
I was just wondering
about your experience with Nationwide.
There's nothing I could say
that was bad about them.
They did fantastic work.
It's an intensive program.
You get there, they set you up,
they get you on IVs
and get NG feedings tubes in,
all that good stuff.
Because at first,
you're not gonna be eating enough food
while you're there
the first couple of days
to make the number of calories you need.
I'm personally not set on rumination
just because of my past with...
-Right.
...being told I've had rumination.
Well, what happened to me
when I was first diagnosed,
they were like, "It might be rumination
syndrome or something else,"
and then,
"Oh, no, it's not rumination syndrome."
And then two years later, they were like,
"Oh, it actually is rumination syndrome."
I went to Nationwide and they were like,
"Yeah, it really is," and they fixed it.
-Did they do any breathing or--
-Yeah.
For me, a lot of diaphragmatic breathing
was what helped a lot.
The first time I was shown it and
taught it in a couple of other hospitals,
it didn't work, didn't help.
Then in conjunction with the stuff there,
it actually did work and help.
So just because you've tried it before,
it didn't work in the past--
I was looking for more negative things
'cause it's like--
-I wish I could give you something.
-I know.
And you've been good,
like, ever since Nationwide,
you haven't had any issues?
With what they've taught me,
I am able to...
-just deal with it and move through.
-Okay. This has helped.
-I really appreciate it.
-I hope you get better. I really do.
Thank you.
It's amazing that they helped him.
I think it's a great program.
It's a great option.
I'm just still, like...
nervous and scared
to, like, not get the same results.
I don't wanna get my hopes up
because my past has screwed with me,
and that's made me
very cautious and scared.
It comes down to where you're almost 18
and you will be making
these decisions for yourself.
There's a possibility
that this might work,
but, again, you have to be on board.
You have to be willing to do it.
I would love to try it out,
but when he said the feeding tube...
-Yeah.
-...that scared me,
and with rumination, that scared me.
I've had a very bad...
like, very bad experience with that.
Well, in reality,
not everybody's gonna have a perfect, um,
a perfect experience like he did.
I think you've been through
so many different things.
You're not really gonna be able to go in
thinking this is 100%.
But they don't really allow
anybody in the program
that basically isn't going to pass it.
-Yeah.
-So if they accept you in it,
they say, "Hey, I think this is
a 70% chance that you'll do well in this,"
then there is enough of a percentage
and enough of a positive that it's...
-it's worth trying if it's viable.
-Yeah.
[Jodelle] When you get into this journey,
you get sick of the...
direction of more drugs,
more surgeries, more this, more that.
And I think Lashay and I have come
to an agreement
that we won't do anything invasive.
So when rumination was presented,
I did a little bit more research
on my own,
contacting one of the nurses,
and I basically kinda
drilled her on some of the things
that were my questions and my...
my concerns.
They don't look at it
as a psychosomatic issue.
They look it more as a functional issue
with the brain and the gut connection.
That's basically why I'm on board
to try the rumination program.
When we started this experiment,
I think there was some sort
of change in Lashay.
She finally accepted the fact
that she is sick.
It's giving her a will
to want to still fight...
and search for things that will help her.
It's given us more hope.
[Lashay] No, he has a red head
on his stick, but--
-Oh, I was like--
-[Lashay] No, he's not red.
-Byron has red hair.
-[Lashay] Yeah, I know.
-Parker does not.
-[Lashay] Does not.
[Lashay] I think this experience helped.
I think we were kind of, like, lost.
I was sick of doctors.
I was sick of medications.
I just wanted...
I was stable with my port.
I think I was done.
-[cheering]
-Awesome.
[Lashay] Hopefully...
[clears throat]
...I can share, some, like...
share my experience
with people 'cause it might help them.
[woman] Can he hear us if we yell?
-You can yell in my ear.
-Wait. No, I was gonna say...
[Lashay]
I think we've made progress in me.
I'm glad that I chose to do this.
The crowdsourcing might lead
to a solution for me.
I'm guessing that's him?
-Yeah.
-Randy.
[laughing]
[Lisa] For a while, I wasn't sure
that my crowdsourcing experiment
was gonna be successful
for Lashay and her family.
Luckily, the crowd was able to gain
Lashay's trust, and that's fantastic.
So now she has a diagnosis,
and it's up to her,
as she moves into adulthood,
to find the treatment that's gonna work.
It's something I learned very early on
in my career as a doctor,
that getting a patient's trust
is essential before you can make
any progress forward.
Our next patient
has a potentially fatal condition
that's put his life on hold.
We all get déjà vu,
but when Matt gets it, his heart stops,
and his doctors don't know why.
[retching]
[woman] You okay? Need some air?
[retching and vomiting]
-[woman] Well, his heart stops.
-[woman 2] Can you get help?
[monitor beeping]
[Matt] I got lightheaded and then...
passed out and woke up and then vomited.
It's just very stressful.
And if I flatlined last time,
I could flatline again any time,
and it could be permanent.