S06 E04: The Caretaker

True Story Media.

Before we begin, a quick warning that in this show we discuss child abuse, and this content may be difficult for some listeners.

If you or anyone you know is a victim or survivor of medical child abuse, please go to munchhousensupport.com to connect with professionals who can help.

Tell us about him.

What was he like?

He was always joking around and he like always wanted to make somebody laugh and

he was really into trucks and cars and getting dirty and just like everything you envision of like the stereotypical little boy, you know, like that was that was him and just um

I remember a couple of birthday parties.

The whole family was there just for his birthday.

I remember that feeling really good and just like I said, I don't even remember what it was he said or did, but he was always trying to like make people laugh and joke with people and his laugh was just the best and like bright red hair and just the most, I don't know, fun, lively little boy, just full of life and full of energy.

And that's just who he was, like through and through.

Like it was hard to not be in a good mood around him, you know what I mean?

He was just like, oh man.

So there were some really, like, really good moments in there.

In the last episode, we detailed the intense legal drama that followed Lisa McDaniel's conviction for medical child abuse, her brief stint in a detention facility, and how she and her husband Carrie not only ultimately got their daughters back, but added another child to their family.

Colin McDaniel, born July 25th, 2002, was chubby-cheeked and cheerful with a shock of flaming red hair.

Colin was a light in their lives, especially after all Michelle had been through with her family.

But there was darkness ahead.

I have all these thoughts about like what happened to my brother if mom had a hand in it and

knowing that like on paper

it's likely that she really did

like I can't that's been really hard to deal with but also like I guess I haven't had to like

process it in a real tangible way even though logically like I know on paper like I know what it looks like right but like

having other people

look into it and also want to know the answers and also want to know the truth.

And this is at the heart of what we're trying to do this season.

Get as close to the truth as possible about what really happened in the McDaniel family.

To once and for all, drag it all into the light.

As I said at the outset, Michelle and I have been discussing telling her story for years.

I warned her in the beginning that she would likely learn things as we went and that this could be a difficult experience to prepare for.

I know this because I've been there myself.

There are details that once you know them, you can't forget, even if you wanted to.

People believe their eyes.

That's something that is so central to this topic because we do believe the people that we love when they're telling us something.

If we didn't, you could never make it through your day.

I'm Andrea Dunlop, and this is Nobody Should Believe Me.

If you just can't get enough of me in your ears, first of all, thank you.

I have a job because of you.

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It's a deep dive into three of Mike's most impactful Munchausen by proxy cases, and I think you'll love it.

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Lisa and Carrie had fought hard to get their girls back under their roof and to keep Colin in their home.

But once the drama of the court battles subsided, the two appeared no more interested in the day-to-day grind of parenting than they had been before.

And Michelle, who was 10 years older than Colin, ended up being more more of a caretaker than a sibling.

I remember taking care of him.

Like I remember changing his diapers, feeding him, like doing all the basic kind of like caretaking things.

And like, of course, it wasn't 24-7 because like I was in public school.

So I'm sure it wasn't like all the time, but I do remember having a big role in taking care of his just like

basic needs, I guess, and being like really, really close to him.

And your dad at this time is still the pastor?

No, so my dad had actually, he actually stepped down from his position

when my mom got arrested.

I guess, you know, having a spouse get arrested will do that.

He had a lot of jobs, I think, around then.

I think it was really hard for him to like hold down a job.

And so we were all living in Hazelhurst.

My mom

was at home without like she was a stay-at-home mom with us.

The finances of the McDaniels are a mystery that will pervade the rest of this story.

But despite Carrie's sporadic employment and the fact that they had three children to support, the couple managed to take a lot of trips.

Lisa was technically a stay-at-home mom, but she didn't seem to have much interest in doing either of those things, as her sister Sabrina remembers.

Him and Michelle and Angelin would be at my house basically all the time.

Lisa and Carrie were going places, leaving them.

They would be at my house.

I would have all three of them with my three kids, so had a house full most all the time, especially during summer.

The amount of time Sabrina spent caring for her nieces and nephew is ironic, given that Lisa had used her supposed lack of family support as a justification for poisoning and attempting to suffocate her daughter, saying that it was her desperate sense of overwhelm that had caused her to try to keep the child in the hospital.

And all of the drama and chaos of the past several years was beginning to take a toll on young Michelle.

I feel like that was when my mental health really like everything started to settle on me because I remember that was like really around the time like I can first identify like true depression

and a lot of anxiety and then I started having like even that young I mean I was probably

I think I was 12 or 13.

And I started having a lot of like suicidal ideation and like just a lot of that.

Michelle's well-being always seemed to be an afterthought with so much drama going on in the household.

And this was compounded by the ways in which Michelle was expected to care for her siblings.

And as a teenager, Michelle was trying to find her own identity outside of her family.

I remember when I first started to like

be separate, I think a little bit from my brother.

It was actually the weekend like mom claims like the last weekend he was healthy

because it was, like I said, I was spending a lot of time with like him and then I was had started like meet friends and stuff so I started to not be home quite as often and there was like a band event the same weekend that mom had planned to take my brother to this like Thomas the Tank Engine thing he was like a huge fan of that and I didn't go and that was like I just kind of remember even them being almost like feeling guilty for not going um and doing this like thing with the band or something um

but you know we i went to my thing and they went to theirs and I like saw the pictures or whatever.

And then I guess it was like that week after

that

my mom

got a call from the school that my brother had just like walked into a poll because he didn't see it.

And so that was like the beginning of what we were told of like him being sick.

Lisa's story of the onset of Colin's illness has a few different versions.

Michelle remembers the story about the poll.

Sabrina remembers hearing a different story.

She had called me and told me, Colin fell off the bed last night and he's still not awake.

But it was still early in the morning.

I mean, it was like, my kids have barely got on the school bus.

And I'm like, but he's usually not up this early.

So it didn't trigger me because he wasn't up that early anyway.

And she's like, well, he just fell off.

And I'm like, well, did he have a knot that went, did it dip in?

You know, asking all these questions that you were taught, you know, if they get a knot that goes on the inside, you need to worry about it or whatever.

And I asked those questions.

She's like, oh, no, no, no.

And I'm like, well, how did he fall off the bunk bed?

And if he fell from the top bunk to the bottom bunk to the mattress, did he hit his head?

I mean, did he even hit his head?

Then, supposedly, now she says he woke up screaming.

I didn't hear him.

But she said, he's screaming, he's screaming, he can't see, he can't see.

I didn't hear it.

So you're on the phone.

I'm on the phone with her.

And because

it stands out in my mind, why would you call me and tell me he fell off the bunk bed?

So she ended up, she says she took him to the doctor.

The doctor couldn't find anything wrong with his vision.

But supposedly the doctor gave like the personal cell phone number in case something happened and he needed to be called.

Whether she actually took him or not, probably nobody will ever know.

Neither Sabrina nor Michelle remembers Colin having any issues with his vision.

And for a time, the incident seemed minor.

It was a couple of months had passed

and he had went in for some shots.

Like, you know,

because he was going, he was in preschool

and I guess maybe he was not up to date on his shots.

Yeah, you know.

So she had to come in for his shots and then within the next week, He started having a little bit of trouble.

When she tried to blame it on the vaccines and I just wasn't buying into that, I'm like, and I kept telling her, I just don't, that's not right.

It's just not right.

And then I would say maybe six months passed and it just literally seemed like overnight.

He went from being this energetic, I'm going to do this and this and I'm going to prank you and play jokes on you and tell jokes and make everybody laugh.

He went from that to, I don't have enough energy to get up off this couch.

Sabrina remembers this moment, rather than the alleged vision loss, as what precipitated Colin's downward spiral.

And Lisa herself reiterates this idea in a couple of anti-vax posts on her Facebook.

In one post, she condemns a story about a North Carolina school district incentivizing parents to vaccinate their children by raffling free iPads.

Because apparently, the promise that your child won't get or spread a life-threatening illness is not incentive enough for some.

Lisa writes in this post, quote, this is going too far.

Vaccines are what caused Colin to have his first flare-up of optic neuritis.

He went blind in both eyes.

While I am recording this, there's currently a raging measles outbreak in Texas that has led to the death of two children.

So I'm compelled to clarify here that there is no connection between vaccines and NMO.

The falling off the bed version seems to be the one Lisa has landed on in her public recountings of the story.

Colin was born a very healthy little boy as far as we knew and developed normally all through his babyhood and early toddler years.

And, you know, we were like any other family with two other daughters.

And then Colin was our baby.

And, you know, he did all the normal things and he ended up going to preschool,

had fun singing the songs and interacting and making friends just like any other normal, you know, kid that age.

And then one day, very suddenly, our life just completely changed.

I'll never forget the day,

actually on Halloween night in 2007, Colin was playing on the bunk beds with his sister.

They were jumping on the bottom bunk and he fell off and bumped his head, kind of knocked the breath out of him a little bit.

He was a little winded.

He was perfectly fine after that, after mama picked him up and settled him down.

And, you know, we loved on him a bit.

He was perfectly fine.

And

life was never normal after that.

The very next morning, Colin woke up and he was vomiting a bit and kind of scared me.

And I thought, oh, he's he must have injured himself.

when he fell off the bed.

So took him to the emergency room.

They're like, we think he just has a virus.

He'll be fine.

Take him back home, let him rest.

So we did that.

That's Lisa on a podcast called Exceptional Stories and the People Who Live Them, hosted by Steve Dover, a friend of Lisa and Carrie's.

Lisa tells a similar version of this story, with some minor variations, in her conversation with a co-worker on the Guthy Jackson podcast, The Power of Rare.

And I'll never forget that day.

He, right around that four and a half year mark, you know, he started reaching for his cup, but his hand would go beside it and he knocked it over.

And of course, knowing he's such a prankster, I'm thinking, well, he's just playing a joke on us.

Well, then he went to the couch where I would normally sit and he started tapping my daughter on her leg and calling her mommy.

And I was like, Colin,

I'm over here.

And he looked at me and I realized his pupils were huge.

And

at that moment, it still took me a minute to realize.

that he couldn't see because he never really even told us he couldn't see.

So obviously

our world completely changed then in that moment when I realized he couldn't see and of course set out on that journey to kind of find out what was wrong.

Shortly before Colin gets diagnosed with NMO, Lisa begins a blog on Caringbridge, a website where families can keep in touch with loved ones experiencing an illness.

Here, Lisa keeps a prolific and detailed chronicle of Colin's illness, often posting every day for a period of several years.

The falling off-the-bed detail reappears in an early post on the site, with Lisa writing that Colin went, quote, completely blind within a couple of days.

Michelle, who was 14 at the time, does not recall her brother having any issues with his eyesight, let alone mistaking her for their mother or going completely blind.

The thing she most recalls is her previously vibrant brother's sudden lack of energy, as does their aunt Sabrina.

Far from the devoted, concerned mother Lisa portrays on her blog and social media during this time, this turn in Colin's health did not seem to inspire Lisa or Carrie to be more attentive as parents, as Sabrina remembers.

And months and months went by that he was sick and didn't feel good and couldn't get off the couch, but Lisa and Carrie were still leaving him.

But at this point, they had got to the point where Carrie's mom had moved in the house, which she was older at the time.

And I don't know I was watching them.

They would leave all of them and it would be Granny, which is what I call her.

It would be Granny, Michelle, Angelin, and Colin.

And they wouldn't let anybody know they were gone.

And they would leave like overnight?

Yes, they would leave like for weekends.

I don't even remember them.

Yeah, they would leave for weekends and say, well, Bernice is there.

And I'm like,

but one day when Michelle, because it was basically Michelle happened to watch, because she basically had to kind of watch Granny too, because Granny had got, I think, the first stages of dementia or early onset Alzheimer's or something like that

so she was basically watching them well

she said she called me Michelle called me and she says

something's wrong with Colin and I need you to come over here and I don't even remember this this is wild and I was like you know and we didn't live maybe three minutes away from him anyway

And I'm like, okay, I'll be there in a minute.

I'm like, is it, do you need to call the ambulance?

You know, and she's like, I don't know.

I don't know.

This is after Colin got sick yeah this was after he got sick

it was like the whole weekend they were in Savannah or Atlanta or somewhere literally don't remember this keeping in mind that I had called Carrie Lisa on the way to their house to tell them that Michelle had called and said there was something wrong and I needed and I was on the way over there to check on you and her response was well if you need anything just call his doctor

That is so bizarre.

Okay, so anyway, I get there and I walk in the door.

Colin has red hair.

I mean, and it's like just a head full of beautiful red hair.

And he's sitting on the couch and you could see where he was sitting from the front door that I walked in.

And I could see the lice.

It was just that bad.

So I know when they left it was bad that they know he had it

because it didn't get that bad just that day.

And I asked Michelle, I said, Michelle,

how long has Colin had lice?

And she's like,

what are you talking about?

I mean, like, you know,

she's like, I don't know, which would be a typical teenager response.

Let's just face it.

But it was so bad.

And I'm like,

and I remember calling my husband and I was like, this kid is eaten up with lice.

Like, there's no way you could not know he had it.

So I'm like,

but it was just so bad.

But I'm like, this is

horrible.

And I called Lisa and I'm like, why the hell did y'all leave him with a head full of ice?

What kind of people are you?

The idea of Colin experiencing medical neglect at the hands of a Munchausen by proxy perpetrator may seem counterintuitive, but this is a common factor in these cases.

Because of course, caring for the child isn't actually the point.

Sabrina loved her nieces and her nephew, but the situation was wearing on her.

But that became an all-the-time thing.

It was like, we're just going to leave him him and we're going to leave him with Granny and it don't matter that he's sick because he was still having issues, you know, and it was just, oh, well, we're just going to take off and go overnight or go from Friday to Sunday.

And Michelle was responsible for watching them.

There were several times that I called that same pediatrician when they would be gone and he would just be running a fever and

you know, you didn't know what was wrong with him.

And I feel like the pediatrician failed to do what she needed to do because I feel like she should have reported.

And she should have reported more than one time.

But

Colin kept getting sicker and kept getting sicker.

And they said, well,

it could be MS, I think was initially what they said.

It could be MS.

According to Lisa and Carrie.

Yes, yes, according to Lisa and Carrie.

But it could be MS.

So, you know, now Google is a big thing, and I'm thinking, let me Google this.

Well, I think the first time she ever, it ever got brought up was like, she said it and then it was like, but don't Google it.

Yeah.

And so I was like, the first thing I'm going to do is Google it.

Like, I'm like, don't.

During this time, Lisa regularly mentions three doctors on the blog who appear to be the core of Colin's care team.

His local pediatrician, Dr.

Battle, a pediatric neurologist, Dr.

Bunch, in Savannah, and Dr.

Jane Ness from the University of Alabama.

Dr.

Ness is the specialist who Lisa reports gave Colin the diagnosis diagnosis of the rare autoimmune condition of NMO, which Lisa sometimes refers to by its older name of Devix disease.

Lisa tells her friend Steve Dover a parallel story about the dangers of Google on this podcast.

We were in Birmingham talking to Dr.

Jane Ness, who was his doctor,

pediatric neurologist out of Birmingham at Children's.

And she told me, she said, okay, he has this diagnosis.

She wrote it down on a business card and gave it to me.

She said, I don't want you to Google it.

You're going to find out a lot of misinformation.

And I looked at her, and this was our first meeting.

Keep this in mind.

I looked at her and I said,

Dr.

Ness, I know you don't know me very well, but you're about to learn a whole lot about my family.

I've got to have every detail there is.

That is my coping mechanism.

So if you don't want me to Google it, you better be putting some articles in my hands so I can read up on this because I've got to know all the details in order to cope with it.

We don't have a way of fact-checking this story, but telling someone not to Google something is a pretty good way to get them to do just that, that, especially if they know that they're dealing with a majorly unreliable narrator.

Basically anything she told me because of the whole Angelin situation, I googled, okay?

She tells you the sky is weird.

Yeah, I'm gonna Google it, yeah.

So

I Google it, and I'm thinking, hmm, the sentence just don't match what Google's saying, but

you know, I'm questioning everything at this point.

And then

he was getting sicker and sicker, and they had put him on around a steroid.

So all of a sudden, he went from being a pretty small frame child to, you know, beefy, fatty face.

And just his face at one point was so swelled it looked like if you touch it, it was going to pop.

Well, it had started.

Yeah.

I don't know if it was like...

I guess it was because of the steroids, but he had swollen so large that like his, yeah, his cheeks were like starting to split from just the amount of weight.

Like, yeah, it was like, but he, but he was on, they had him on steroids for so long.

Do you know what the steroids were for?

Supposedly it was going to combat whatever was going on with him.

Like his tiredness, the fatigue, it was going to help with all those things.

But still didn't know what was wrong with him.

And I'm like, well, if we don't know what's wrong with him, why are, like, I can see steroids for a few days.

But we're talking.

He's typically avoid putting people in.

We're talking months.

Okay, he's been on steroids.

We've been doing this for months and months.

Like in,

And it might not be an IV steroid, but it was like a steroid at home.

He started to take, like,

so he was getting an incredible amount of steroids.

I mean, like,

a lot.

And he's still going to

a preschool, like a church-sponsored preschool.

And he just kept

just declining.

Especially a small kid getting steroids for that long of time and not have a diagnosis or a real reason as to what they're really doing.

So I think other people started questioning it because

the freshness of Angelin and all that stuff hadn't like completely dissolved.

And then

all of a sudden it was, well, we need to move to where this better doctor is.

And that's in Alabama.

Lisa confirms in her blog that Colin was taking a, quote, massive amount of steroids, which led to rapid weight gain.

Long-term use of steroids can have serious side effects, including bone loss, glaucoma, muscle wasting, and suppressed adrenal function.

Colin appears to have started this steroid regimen shortly after the alleged onset of symptoms, as a photo from late 2007 shows him looking drastically different from photos taken months earlier.

According to Lisa's blog, MS was the suspected diagnosis until Colin was diagnosed with NMO in March of 2008, and by November of that year, Lisa and Carrie had uprooted their family and moved them to Alabama.

Moves across state lines are common in these cases, and the purported reason is almost always the same, that there's only one very special doctor who is capable of treating their child's unique case.

For Lisa, it was Dr.

Jane Ness, an associate professor of pediatric neurology and neurobiology and director of the Center for Pediatric Onset Demyelinating Disease Clinic at the University of Alabama.

But it seems far more likely that the real reason for the move was that Lisa wanted a clean break from her own dark history, lest it cast into question her son's illness.

Because the people who'd witnessed what Lisa had done to her daughter Angeline, such as the PICU nurse Judy who'd cared for her, hadn't forgotten.

Like I've taken care of thousands of children and, you know, a lot went on at the hospital.

So when Colin was little before they moved, I walked into the unit one day and he was in the PICU, PICU number four.

And I saw the name on the board and I had to leave the unit because I thought I was going to be sick.

And so I said to the charge nurse, I said, I can't take care of that patient.

I cannot go near that room.

I don't want anything to do with any of that.

I told all my co-workers, you know, who he was because most of them had no idea.

And I did let the physician group that was taking care of him, you know, know my concerns, but I didn't like go look at his chart or see why he was in there or anything like that.

I basically, because I didn't even want to see her because I just had such a visceral reaction at that point.

I couldn't even look at her after everything that she's done, so I just stayed away from it.

And then I was off after that.

And by the time I came back to work, he wasn't there anymore.

Judy couldn't remember the exact timing of this incident, but it appears that either this report or some other report coincided directly with the family's decision to move.

Lisa's blog gives us some insight into what may have been happening behind the scenes.

In August of 2008, just five months after Colin has reportedly been diagnosed with NMO, Lisa begins to talk about death, with the first mention of Colin's disease being fatal.

She recounts a dire conversation she allegedly had with Dr.

Bunch, the Savannah pediatric neurologist.

Quote, The neuro basically told us at his rate of relapse, he would likely be unable to walk in just a short time.

She told us to sit down with our family and prepare them for what is happening and to make the most of the time we have now.

In a letter she wrote for us to another doc, it says, quote, Colin McDaniel has been a patient of mine since November 2007.

He suffers from neuromyelitis optica, a disease rare in children and likely to be fatal.

These neurological findings are predictable and consistent.

There's no way to verify the authenticity of this letter, but my research on NMO found that this condition is not considered fatal for children who receive a timely diagnosis and treatment, which we know Colin did.

Yet from this point on, death becomes a common theme on Lisa's blog.

In the next entry, she writes, quote, Without research, Colin and others like him will likely be paralyzed, blind, or die die waiting for the right treatment.

Later in August, Lisa writes, quote, We talked about hospice care for him.

Our family needs help dealing with everything going on with Colin, and hospice will help provide that for us and for Colin.

We are not giving up on him.

We just need help right now with everything.

During this time, Lisa is pushing for Colin to undergo another round of plasmaphoresis in Savannah, writing, quote, Pray Dr.

Bunch will be quick to get this together for Colin, and whoever does the plasma in Savannah will be in agreement.

And she mentions the hospital's hesitancy to do this treatment.

Colin is eventually admitted to the PICU in Savannah and has a line placed for plasmapheresis, which Lisa reports him having a concerning reaction to.

So, here Lisa is in the same hospital where she nearly killed her daughter, and Colin has a line now, just as Angelin had.

It's easy to imagine how how this raised alarms.

On September 3rd, 2008, Lisa writes that Colin, who is still receiving his treatment, had woken up with 104 degree fever and that the doctor is sending them in for blood cultures, indicating that he may have an infection.

Lisa writes, quote, I have a terrible feeling they will want to pull the line tomorrow when we go back to Savannah.

I so hope not.

Then for five days, the blog goes dark.

On the 8th, when it comes back, Lisa writes the following.

Dear friends and loved ones, we apologize for having to take Colin's quest offline for a while.

Unfortunately, someone with a lot of time on their hands and a desire to put their uninformed input into our life made it necessary to do this.

Thanks to some wonderful people and a lot of prayers, what was meant for evil has been defeated.

Praise God.

After much soul searching, we have decided to open this site up again.

This was not an easy decision.

But why should we allow the hurtful intents of one person to affect those who really do care?

In an email to her aunt Gail the following day, Lisa informs her that the blog is now up again and that the family has decided to put their house up for sale so they can follow Dr.

Ness to Alabama.

Because as Lisa says, she's, quote, the only one who can take over Colin's care, because Dr.

Bunch, Colin's current neurologist, is moving to Florida.

And while it's true that Dr.

Ness and the UAB Center were one of the only places in the country at this time that specialized in NMO, the nature of this diagnosis was murky at best.

But by moving to Alabama, Lisa exploited a number of loopholes.

She now had the buy-in of a well-known specialist, and Lisa's record was unlikely to follow her there.

Alabama gave her a clean slate.

Because it wasn't just the doctors in Georgia who were questioning Lisa.

No one in their small tight-knit community in Hazelhurst had forgotten what she'd done to Angelin.

Michelle remembers the chatter on a neighborhood message board.

I don't know if you guys ever heard of it, but it was literally just for like small towns like my town where everybody went online and just talked shit about each other.

And it was just full of drama.

But there was a lot of like noise around my brother being sick.

and kind of what that meant and everybody was like asking questions because they knew my mom had this history of like abusing her first sick child and like making her side child sick and and so there was just like a lot and I remember me and my aunt talking about it at the time and

I remember kind of I don't remember maybe if I asked her or if she asked me first or like what but like

I think it the hidden got brought up because of this like website because somebody on the website was like how do we know that this woman's not just making this child sick you know um

And I think my aunt Sabrina had actually chimed in on that one and was like, I personally know her.

Like, she's not making this child sick, like this is different.

And I think we all legitimately, I mean, I think we had questions, like of course, but I think for the most part, everybody in my family that I'm aware of legitimately believed he was sick.

It may seem strange that the family wasn't more suspicious of Lisa given her history, but I understand.

It can be tempting to turn the page on even the darkest chapters of our family's past, to stay together, to believe in the good in someone, even if there's not much evidence to be had of it.

And Colin had been diagnosed with a serious condition by a leading specialist.

So it had to be real, didn't it?

September is here, and you know what that means.

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Proximity to the heroic Dr.

Jane Ness and evading suspicious eyes may not have been the only motivations for moving.

When it came to financial help, there wasn't much juice left to squeeze out of Hazlehurst.

Just a note here that we had been posted up in Village Pizza in Hazlehurst for many hours by this point in our conversation, so you hear a vacuum in the background.

Many thanks again to those fine folks for letting us stay so long.

So many people had gay money.

Literally, for like two years,

they never had to worry about a dime because they were getting money handed to them left, right, and sideways.

Okay.

And so when all this came out with Angelin, that it was in fact the mom that was causing the issues with Angelin,

like all these churches and everybody that had give all this money were, oh, I mean, people were living.

I mean, and with every right, because at this time they were invested.

I mean, they had invested in this child.

When all this starts coming out with calling and he's getting sick and he's going to the preschool and the people at the preschool are noticing man he's gaining all this weight what's going on you know they're noticing all this stuff but

then it was just all of a sudden out of the blue well there's a doctor in alabama that we're going to try to get in to go see but we're going to have to move but the reality of the move was not the fact was not really because

There was a great doctor in Alabama they were going to see.

It was the fact that people here were sick of their shit, to be honest.

I mean, there's no other way to say it.

And a new state, people don't know what's going on.

So they wanted the fresh

state to succor people.

The family once again rallied to help Lisa and Carrie, forming a caravan to help them move to Alabama.

So I don't know how they ended up with this house.

Oh, they had all these neighbors

that they had hoodooed,

that they were just

you know their mr and miss personality and they just moved into the neighborhood because their kid was sick and they had all these wonderful people because the people in this neighborhood were pretty fabulous still are a lot of people still live in that really great people yeah

The family's new life in Alabama gets off to a harrowing start as Colin is hospitalized with a life-threatening septic infection just days after they arrive.

By the time they they moved to Alabama, Colin's treatment for NMO was well underway, including undergoing multiple rounds of plasmaphoresis, for which he now had a surgically implanted port, which was the apparent source of the septic infection.

And the timing of this infection, according to Lisa, was down to God himself.

She writes in her blog, quote, We can hardly bear the thought of losing him, and we almost did.

It was all in God's timing.

He knew this was going to happen to Colin.

God had timed timed it perfectly.

He didn't cause this to happen to Colin, but it was his timing.

He knew Colin needed to be here in Alabama for this.

He knew if we had to get him to Savannah, he would not have made it.

Thank you, Lord, for your timing and for having us where we need to be.

It's important to include here that we do not have access to Colin's medical records, and that while Lisa's blog, which runs over 170,000 words in length, is vividly and often gruesomely detailed.

For obvious reasons, we are not considering this a reliable source.

Some things in this blog can be corroborated by family members, others are at odds with their memories.

So as we go forward with this story, we wanted to give some grounding about Colin's reported diagnosis at this time of NMO.

My name is

I am a pediatric neurolog.

I'm specifically a pediatric neuroimmunologist, and I specifically focus on neuroimmune disorders in children, which are autoimmune diseases that can affect the brain, the spinal cord, and other areas of the nervous system.

We spoke to Dr.

Kay, as we'll be referring to her, on the record earlier in our reporting process.

However, as the seriousness of this situation became clear, and because Lisa's employer, the Guthy Jackson Foundation, plays a very prominent role in the NMO community, we opted to anonymize her, with her permission, to ensure that speaking with us wouldn't jeopardize her important research.

Dr.

K explained what NMO is and how it works.

So neuromyelitis optica, or NMO, is a disorder of the nervous system that affects the myelin on nerves.

And so if you think about the nerves in our body, a lot of them are coated with a fatty coating called myelin, and that goes along most of our nerves and it kind of helps that signal conduct smoothly.

And so what happens is there's something called demyelination, which means that there is inflammation that attacks that coating on the nerves, and then the signals get messed up that the brain is trying to send to our eyes, is trying to send to our spinal cord and to our body, and ultimately that's what causes symptoms.

In layman's terms, this is something like the protective coating wearing off of a wire and causing it to short.

NMO, or neuromyelitis optica, is sometimes misdiagnosed as multiple sclerosis, a more common demyelinating disease, because NMO is very rare.

NMOSD is considered a rare disease disease by definition.

It is rare, and it's even rarer in children.

And so the prevalence of this disorder is about 0.5 to 4.5 cases per 100,000 people across the world.

And if you break that down further, in pediatrics, we think that only about 3% to 5% of cases of all those cases are in children in terms of symptoms starting before the age of 18.

And so you're taking a rare disorder and making it even more rare.

And so that further facilitates issues with recognition because, you know, general practitioners can't know everything about every most rare disorder.

And so in children, this is incredibly rare.

And so it often takes a subspecialist to be able to recognize the signs if they're not classic.

Yeah, that's interesting.

And then is there also

difference in prevalence between male and female patients?

Yes, there is.

And this disorder is much more common in females.

That difference actually is less dramatic in children.

And so in adults, we can see a difference of one male to every nine females with this disorder, whereas in children, that difference is only one to three, so one male to three females.

Just to break these numbers down a bit, this puts the odds of Colin having NMO anywhere between one in 1.8 million to one in 25 million.

And there's actually yet another factor that makes Colin, who is white, even less likely to be diagnosed with NMO.

So something that is very important to know about this disorder, NMOSD, is that it is more prevalent in certain racial or ethnic groups.

And so for example, as compared to Caucasians, East Asians would be three times more likely to develop this disorder, and Black African-American patients would be 10 times more likely to develop this disorder.

Some of the research has suggested worse outcomes in those with African ancestry.

And so there's a lot of work focusing in on, you know, are there racial disparities?

Are there disparities in outcomes based on access to care, access to subspecialists?

We know that certain symptoms like the vomiting and hiccups lead to delays to diagnosis,

but is reduced health literacy, underinsured patients.

There are all sorts of other factors that can lead to delayed diagnosis or treatment gaps or treatment barriers.

And so I think in this disorder that is more prevalent in historically marginalized populations and minoritized populations, that when we're thinking about improving outcomes, it goes hand in hand with identifying and addressing these social determinants of health outcomes as well.

Partly because of a massive infusion of resources from the Guthy Jackson Foundation, the research on this rare disease has made great leaps in recent years.

So I wanted to nail down what the diagnostic criteria looked like back when Colin was diagnosed in 2008.

So I asked Dr.

K about this, and she told me that there was a significant update to the criteria in 2006, two years before Colin was diagnosed, that highlighted the role of the Aquaporin IV antibody as a biomarker for NMO and as a distinguishing factor between NMO and MS.

So those criteria were more focused on vision loss and spinal cord symptoms.

This was classically known as DeVick's disease and it involved optic nerve inflammation and spinal cord inflammation.

Those were were the diagnostic criteria that first incorporated this antibody test, this aquaporin 4 antibody test, into the criteria.

But we didn't really recognize that area postrema syndrome was a part of this, and it wasn't recognized that maybe there are forms of this disease that don't have that aquaporin 4 antibody being detected.

So those criteria focused on having the aquaporin 4 antibody and having these classic symptoms.

To this day, the antibody test is the most common method for diagnosing what is now referred to as NMOSD.

Current research shows that between 10 and 30% of NMOSD cases are seronegative, meaning that they would not test positive for the antibody.

I asked Dr.

K how a diagnosis would be determined in such a case.

What is being explored more deeply for the next criteria is that diagnosis of seronegative NMOSD, meaning that the aquaporin-4 antibody is negative by a good test and we will often repeat it because there are times where it could be negative initially and needs to be repeated especially if the patient was on immune treatments at the time it was tested that can affect the validity of the test

but even if that antibody is negative in a reliable way more than once you know we do have to think about something called seronegative nmo sd the issue here is that we don't know exactly what causes serinegative nmo sd and in our experience there are some patients whose disease may behave differently than others.

It's hard to pinpoint exactly where the evolving diagnostic criteria were in their evolution when Colin was diagnosed in 2008.

However, there is no question about Dr.

Jane Ness's expertise in this category.

She is a leader in this field and has published abundant research of NMOSD and other demyelinating diseases.

As it so often is in medicine, diagnosing and treating NMOSD is both an art and a science.

So it's hard for us to really wrap our brain around it because there are definitely cases where the symptoms really mimic NMO and then the MRIs look exactly like they should and we're surprised the antibody is negative and I would treat those very aggressively, you know, to prevent the further disability.

But especially in children, they can be more likely to have a one-time event in terms of having an attack that could look like NMOSD.

However, this may not be a lifelong condition.

And it may be that once they recover from this event, nothing will ever happen again.

And so this is something that's very difficult to wrap our brains around because we have criteria for a serinegative NMOSD.

They're more stringent than the criteria to diagnose this disorder when the antibody is positive.

So if the antibody is positive, all you need is one core clinical symptom.

So one of the main ways this presents, and you can diagnose this.

If the antibody is negative, you need two core clinical symptoms.

And you have to have the MRI imaging look a certain way.

That kind of mimics where these

water channels are or a certain way that the lesion should look in the inflammation in the spinal cord or in the optic nerve.

So we do have those criteria, but in children, we sometimes find that even if they meet criteria for serum negative NMOSD, they may not require lifelong treatment with immune medication.

NMO is a relapsing disease, which means symptoms come in attacks.

Dr.

Kay explained that the core clinical symptoms of these attacks are optic neuritis, which leads to vision loss and eye pain, transverse myelitis, which can cause weakness, numbness, and spasms, as well as bladder and bowel issues, and area postrema syndrome, which can cause nausea, vomiting, or hiccups.

And while the symptoms come and go, the attacks can leave permanent damage.

There typically is some degree of recovery with attacks, though.

So for example, if you're at a 10,

attacks might be severe.

So maybe you go to a five and then maybe after that you get back to a nine.

And then with the next attack, maybe you go to a five again, but then you get back to a seven.

And so certainly that can happen with MS, but the risk of residual disability from an MS attack is much less than it is for NMOSD.

And there's a very high risk of residual disability from each attack with NMOSD, which is why it's so urgent to treat promptly.

NMO is a serious, potentially debilitating condition, but it is not, as Dr.

Kay tells us, considered fatal within the current treatment landscape.

I would say that no, I do not expect it to be a fatal disorder.

Now, this is a disorder that can cause severe symptoms that can have complications.

And so, for example, if we were to look back, there's a study that looked at mortality rate in this disorder, you know, thinking about the early 2000s, for example, that looked at this and, you know, 20% mortality over time in adults.

There was a more recent study looking at mortality that was at 7%.

Dr.

K highlighted the importance of receiving proper treatment in a timely manner, but said that if a patient has access, their outcomes are likely to be good.

Ultimately, with the quality of medications we have now, the goal is no relapses.

And so if we're on an effective treatment, the goal would be no further relapses for this disorder.

And usually that's a very reasonable goal.

I will say untreated, a couple of the pediatric studies have shown that the average time to the next attack would be around five months without being on a treatment.

And the same study showed that with treatment, the time to the next relapse was 26 months, but again, that was before some of these newer medications were being used.

And so, you know, our hope now is shifting to

no relapses or you know, minimal relapses with this disorder.

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By both Lisa's account and the family's memory, it took some months after Colin began having symptoms to get the diagnosis of NMO, which from my research and from my conversation with Dr.

K seems like a pretty common trajectory for NMO patients.

And Lisa recounts this process in her podcast interview with Steve Dover.

So we took him back to the pediatric neurologist in Savannah.

She said then she was almost certain he had multiple sclerosis and wanted to start him on some, what I thought at the time, looking back on it, it's funny, but at the time I thought, oh, that's pretty harsh medication to put my kid on.

She's wanting me to give him injections.

And, you know, as a mom, I just was like, I don't really want to do that.

So I started investigating and researching and trying to find someone who was a specialist, pediatric specialist in multiple sclerosis.

Finally got in touch with the National MS Society in Atlanta and they said, you need to go to Birmingham.

That's where the specialist is.

Take him to Birmingham.

They'll be able to figure him out.

So long story short, got all our medical records, sent them to Birmingham.

The doctor immediately called and said, Can you be here Wednesday?

This was like Monday.

Can you be here Wednesday?

We're like, absolutely.

Took him all the way to Birmingham.

She kept him a few days, did some tests.

There is an antibody test for neuromyelitis optica, which is what he was finally diagnosed with.

After the antibodies test and her,

you know, examining him over those couple of days that he was there, she was determined that he had neuromyelitis optica and diagnosed him with that.

And that started the whole new world of, well, we now have an answer.

What do we do now?

This is a good place to note that the existence of an illness does not preclude abuse.

It's a common misconception that a true diagnosis is exculpatory.

However, a positive antibody test certainly would seem to solve this piece of the puzzle.

And again, Colin was being treated by a renowned expert.

Except for this.

On Lisa's social media, she mentions that Colin's antibody tests actually came back negative.

A zero-negative diagnosis of NMO puts Colin in an even smaller minority, 10 to 30%, of this already vanishingly rare condition.

Now, we have covered some very fishy clinical, meaning based on symptoms, diagnoses on this show.

They happen, such as Dr.

Anthony Kirkpatrick, Season 3's CRPS expert, who runs an all-cash ketamine clinic.

But Dr.

Jane Ness is not a strip mall doctor.

She runs a center at a respected research hospital.

There's every reason to believe that she's the real deal.

and she appears to have really had Lisa's back throughout this journey.

Lisa even picked up her family and moved them to Alabama to be near her.

It's notable that, as Lisa mentions in her interview with Steve, she selected Ness herself rather than being referred to her by another doctor.

As with so many things we discuss on this show, by itself, this move could be benign.

MS had been thrown out as a possible diagnosis, and Dr.

Ness is an expert in that as well.

But given the context of Lisa's history, it's worth noting that finding a rare disease specialist in another state or even another country is a common pattern in Munchausen by proxy cases, as in Hope Yobara's case, Mary Welch's case, and the Kowalski case.

How exactly did they land on this less than one in a million rare disorder as Colin's diagnosis?

There's no question that Dr.

Jane Ness treated Colin.

She appears in a Guthy Jackson video at the hospital treating him, and Ness appears to have been quite close with the family.

Michelle has vivid memories of Ness as a presence in her brother's life, and it was her credibility that made Michelle push down her doubts about her brother's illness.

The truth seemed destined to be forever shrouded because Michelle didn't have Colin's medical records, but she did have Dr.

Jay Ness's phone number.

I've been kind of digging through

really just what happened to Colin.

I know mom had said some things about

some of his antibody tests being negative.

And so after

some of them had been negative and there had been one that had been positive which i never

saw do i have definitive proof of what he has no

coming up on nobody should believe me

nobody should believe me is written hosted and executive produced by me andrea dumlop Our supervising producer is Mariah Gossett.

Our senior producer is Taj Easton.

Assistant Editor and Associate Producer is Greta Stromquist.

Research and Fact-Checking by Erin Ajayi.

Engineering and Mixing by Robin Edgar, and Administrative Producing by Nola Karmouche.

Music provided by Blue Dot Sessions, SoundSnap, and Slipstream Media.

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