Case Files 17: Rady Children’s Part 1

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Hello, it's Andrea.

Today we have the first part in our new series about the lawsuit in San Diego involving Ratty Children's.

This is a frequently requested topic for case files, and I'm incredibly thankful to Dr.

Becks, who is taking on the lion's share of the research and reporting on this one.

Those of you who've been with us for a while may remember that I started off my coverage of a similar lawsuit in Florida, Kowalski v.

Johns Hopkins All Children's, intending to make it a four-part miniseries.

Dozens of episodes, and I don't even want to know how many hours later, here we are.

So four-part miniseries has really become the three-hour tour of this show.

So I will say that we are starting off with four episodes about this case to get you up to speed on what's going on.

But much like Kowalski, this is going to be parts one through four of question mark number of episodes because we will certainly continue our coverage as we learn more about this case and as it unfolds in real time.

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It's safe to say that we are the only media outlet covering these cases in depth on an ongoing basis.

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So, hello, Dr.

Vex.

Thank you so much for being here with us today and for your amazing reporting and research on this case.

This is a real doozy.

Frankly, we could easily do an entire season on it,

but as time is of the essence and it takes us quite a long time to do a season, we really wanted to get this on the feed.

And so, we are going to be covering it in, to begin with, in a four-part series, and then we will certainly have continuing coverage as this whole story unfolds.

So Bex,

can you start us off and take us away?

I know a little bit about this case from what I've read and just from sort of my ambient exposure to it.

But yeah, oh, and we should also start with a couple of disclaimers about our connection to a couple of folks in this case.

So our first disclaimer is actually that Andrea and I both met Dr.

Shaylin Nee Now, who is one of the defendants in this this case.

She works for the University of California San Diego at Rady's Children's Hospital and through their child protection team and children's advocacy center.

And we met her at a conference in San Diego this year and actually presented with her.

So we have gotten to know her a bit over this time.

But again, none of the information that we're presenting here today came from her.

It all came from the court documents and from articles that we've read that have been in the news and peripheral information we were able to find on the internet.

So, basically, all of this is stuff that is public record that you guys could look into as well if you're interested.

And the one big thing, just to point out, anyone who went down the big rabbit hole of the Kowalski court case, we were able to get all of the court records in the state of Florida, and that actually included all of the medical records that were released to the courts for Maya Kowalski.

And so, we had a little bit more of both sides of the story.

In this case, we're relying solely on the documents that are available to the public through the courts.

And so we have the claims, and then we have the motions to dismiss the claims.

And that's really the information we're going on.

So there are gonna be gaps in the story that we really can't fill in until or if this ends up going to some kind of trial.

So that makes this a little bit different.

And just so everyone remembers, you know, hospitals, doctors cannot provide any of the medical information or speak to any of the medical portions of the story other than what is in these court documents and that's very minimal um so they cannot come out and say but the patient had this or the patient had this.

They have to rely on what their lawyers put out, I guess, through the courts.

Yeah, really good caveats.

And I think, again, this has yet to go to trial yet.

And so I think we will learn more if it does.

And also, there does appear to have been a police investigation.

So we are going to request those records as well, just to get as much information as we possibly can.

So for today, you're going to walk us through sort of what we know about the who, what, when, and where of this story.

So yeah, so Bex, tell us, tell us what this story is about.

Who are we talking about?

So this all started, to be honest, we kind of, the further back we can go in the story, it allows us to know a little bit more of why we got where we got, I think.

So to take you literally all the way back to 2003 is when Madison, who is the girl at the center of this story.

So similar to Maya Kwalski, Justina Palette are these names that you'll hear kind of coming up.

So her name is Madison.

She's born in 2003.

Interestingly, as a piece of this story is that the mother, Dana Gaske,

and the father, William Meyer, went through in vitro fertilization, it sounds like, at least according to the court documents, three times prior to conceiving Madison.

She was born premature.

They mentioned somewhere, I think, a little bit over three pounds in weight, and was the only child of Dana and William, both of whom worked for Kaiser Permanente.

Dana was actually a nurse with Kaiser and then it seems moved into more of an executive role.

And then William also worked on the executive side of Kaiser, which is how they met.

And

the court documents do go into their whole story, but we'll kind of jump ahead to when Madison becomes a preteen.

And she sounds like an active kid doing well in school.

And then she started having issues with her knee and then with her shoulder.

And I think the shoulder is the kind of the piece of this, but she dislocated her shoulder while at an intensive surf camp.

And that kind of started her.

sounds like her medical journey where she really started seeing multiple specialists about her shoulder, first ended up at Rady's Children's in San Diego, and kind of that jump-started everything.

So, I mean, Andrea and I have been through a lot of these cases, but I'm curious, Andrea, what your thoughts are on the pre-Madison story.

Yeah, and so obviously, Nobex, as you said, these details about her medical journey are coming from the court filings.

So I think we can probably safely assume that this is more or less the parents' telling of the story, right?

Because we do not have at this point the medical documentation to compare it with.

But certainly, you know, the beginning of a story with some obstetrical complications and a premature birth is just absolutely ubiquitous.

We hear about that all the time.

And also worth saying that lots of people experience infertility and lots of people have premature babies.

So again, just because something is a red flag does not mean that it is evidence in and of itself, but certainly immediately sticks out to us because we've just heard that beginning to the story so many times.

Right.

She is diagnosed with something called hypermobile Ehlers-Danlos syndrome.

And within a few months of kind of all these, this diagnosis, she is already on like a modified goal schedule just because of her pain issues, it seems at that time.

And that also always sticks out to me.

And then quickly from this diagnosis of the shoulder dislocation, she has her first surgery, which is a a surgery on her shoulder.

I just want to kind of give a few more details about how her story with Ehlers-Danlos started and with this shoulder issue.

So after the first surgery, you know, she thought everything was fixed.

And then very quickly, the pain and all of the symptoms started up again.

They note many times that she has multiple dislocations of the same shoulder and that there is significant pain.

And I think that is that piece that will feel familiar to people who have followed some of these other stories.

But pain to the point, she was doing, you know, biofeedback, the TENS, which is kind of those little shock therapy to the area.

She was seeing a pain psychologist, which I think is a wonderful piece, taking medications.

And so the injuries were in 2016.

And now we're already kind of jumping to 2018, where she has now completed months of like an outpatient pain program, actually at radies.

Her pain was still severe.

At that point, she was on what's called a 504B plan at school.

So she had even even more kind of restrictions or special modifications made to her school schedule.

And

was she at Rady's the whole time or did she start her treatment at a different hospital?

The two surgeries were at Rady's with an orthopedist there.

Some of the genetic diagnoses, like the diagnosis of Ehlers-Danlos, came outside of Rady's, but it was someone they were referred to.

And it sounds like actually Kaiser was the hub at first, because when you work for Kaiser, your insurance is Kaiser.

And so most of your, like her primary care physician was from Kaiser.

When I did my training in California, there was a Kaiser down the road.

They did kind of the basics of pediatrics.

They had some of the pediatric specialties, but if things kind of became a little bit more complicated or more extensive, then they would refer to us at the local children's hospital, especially if they didn't have a specific kind of surgical option or things like that.

So it does sound like Kaiser initially referred them to Rades to go to this orthopedist who specialized in shoulder procedures.

We are actually going through her second shoulder surgery.

They created a cage around her shoulder joint with ligaments from other people or something and somehow recreated this cage around her shoulder and

just to try to keep it in place.

So it sounded like this was a little bit more extensive, but it was still with this surgeon at RADIS.

During an admission for severe pain, after this surgery, so now two surgeries and still with severe pain, unrelenting pain, she is admitted to radius and she is diagnosed with complex regional pain syndrome, which anyone who went with us in the Kwalski case, that was the diagnosis that really played center stage.

I would say in Madison's story, the Ehlers Danlos becomes more of the story, but this was an interesting little sidebar where she was on the inpatient unit requiring pretty strong pain medications.

And then they recommended actually at RAID's that she go to an inpatient pain program.

Bex, can you just remind us for those listeners that did not spend 8,000 hours of their life reading documents in the Qualls case, what is CRPS?

So complex regional pain syndrome, actually in this case, does seem like there may be parts of it that fit.

So typically complex means it's difficult.

It's difficult to treat.

There's a lot of

kind of comorbidities that come along with it, but it is a regional pain syndrome.

So she injured her shoulder.

The pain of CRPS would be expected to be kind of in that shoulder that she injured and then distal to it.

So through the arm where the injury occurred.

Often with CRPS, you get other symptoms than pain.

So neurologic changes, vascular changes, all of these other things in the extremity that is involved.

What is rare in CRPS is kind of more what we saw in the Kowalski case, which is kind of this whole body pain.

all starts at the same time, very unrelenting.

It does seem like at least at the beginning of this story, that her pain was mostly in the shoulder and in that general vicinity, although the information is limited.

So it does sound like this may have been, you know, something along the lines that maybe was an appropriate diagnosis, depending on how she presented.

But the recommendation, which it should have been, was to go into an inpatient pain program where she can get treatment from all sides.

So whether that's medication and therapy and physical therapy and psychotherapy and all of these things together in one place is the ideal treatment.

It is still rare to have to be admitted actually into the inpatient unit of a hospital from pain or pain pain associated with something like CRPS.

Typically they come in for other things.

So that always stands out to me that this is probably already a little bit outside of the norm or outside of the ordinary, you know, for radies in this situation.

So the complaint basically up until this point is she has this initial injury where her shoulder is dislocated.

And then there's a surgery and another surgery.

And the thing that is keeping her, you know, out of school and coming back to the hospital repeatedly is complaints of pain, is like refractory pain that's not responding to whatever treatments they're trying.

Right.

And it does sound like, again, a little bit different than the story we heard before, is we're now two years into her symptoms and they did an outpatient pain program.

There was a pain psychotherapist involved at somewhere.

They were using medication, biofeedback.

It does sound like they were trying these other things that are often recommended.

Yet, despite all of it, and despite two pretty invasive surgeries, it sounds like,

she was still getting admitted for this severe, unrelenting pain.

And somewhere along the way, it does start to be, you know, pain associated, like whole body pain or pain in other locations.

But this, still at this point, I would say the shoulder and the multiple dislocations of the shoulder is really a big part of it.

And that is something we see with Ehlers Danlos: that their joints can dislocate easier than, you know, anyone else's would.

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So if you want to up your game and support Nobody Should Believe Me, you can head to squarespace.com backslash nobody for a free trial and when you're ready to launch use offer code nobody to save 10 off your first purchase of a website or domain so summer of 2018 two years after that surf camp she actually got diagnosed with pots which is postural orthostatic tachycardia syndrome another one of these acronyms that seems to come up time and again

the idea being that when these patients stand up or change position that they can get dizzy lightheaded feeling of a rapid heart rate because of the quick fluctuations in the level at which their heart is beating.

Some people say, oh, well, everybody's heart rate goes up when they stand up.

It's what's supposed to happen, but it's that kind of change between your resting heart rate and your standing up heart rate that's more pronounced.

The thing with POTS is that it does seem to be one of the things that comes into play when the patients become more debilitated more,

where they do start to do less, they're less active, they're unable to do certain things that they were able to do before.

And it just seems like

you can probably speak to this too from your experience, but it's one of those things that once that comes up too, it feels like we're kind of starting down this path that is similar in a lot of these stories.

Yeah, I mean, POTS is certainly a diagnosis that does come up a lot in munchasm by proxy cases.

And, you know, as with many of the things we talk about, most of the things I would say, this is a real condition.

So this is not a claim that everyone, you know, that this is just a false diagnosis.

And actually, could you explain a couple of things about POTS?

This is not something I'm super familiar with.

I think that's the hard part with POTS is I think it is, there's still a lot that's unknown about it, meaning

can it worsen after you get a bad viral illness?

And it's one of those things that gets triggered.

And then once it's triggered, it kind of never goes away.

But the most important thing to know with POTS is it's symptomatic management.

So, you know, things like increasing hydration, increasing the balance of salt intake with fluid intake are things that are recommended early in the course.

Then there are the kids who do need medication to basically keep that balance correct.

So meaning it's about keeping the blood flow going to your brain and to all of the important organs when you stand up and that you don't get so dizzy that you pass out.

And so some medications will help that balance where it won't let those fluctuations be so great and it'll keep your heart rate more in a balanced range.

That being said, there are these extenuating circumstances with POTS, which I know POTS experts or people that really focus in this field are trying to find less invasive ways, you know, rehabilitation and therapy and dietary changes and nutrition changes, because I think there was a push at some point that IV fluids or fluids through an intravenous line is really the way to improve the symptoms quickly.

And so, this idea of some of these patients needing G-tubes or tubes in their stomach or central lines to be able to give themselves fluids versus like you or I would just attempt to always have a water bottle with us, always be eating crackers, balancing it with a water bottle.

It's kind of became more invasive very quickly.

And I think we're now backing off of that a couple of years, you know, like years later to realize what other things can we be doing early on.

And POTS, from my understanding, is kind of once you are prone to it, it can keep causing issues throughout your life.

But there are times in life where it seems to be more prominent in like the teenage years, probably because your fluid needs and balances and hormonal changes are all playing a role.

And it does affect women more than men.

So there is that question of kind of the hormonal connection.

And I think it's kind of about finding a balance, as with anything.

It's definitely not something that should be debilitating that you can quote unquote die from.

It is something that is very manageable.

Got it.

And yeah, I mean, then the reason that we become concerned for diagnoses like this is not because they don't exist and there, obviously there's like a treatment protocol for this and everything else.

It's because these things that can be a little murky to diagnose and are, can be like catch-all for any number of symptoms.

And especially if there has been a push to have those interventions like central lines and G-tubes and things that then allow perpetrators access, that does become very concerning.

So I think it's like, I always want to be really clear when we're talking about these conditions that there are unfortunately conditions that are much more likely to be exploited by perpetrators.

And we talk about this out of concern for those communities

and those doctors that are trying to get answers about those diagnoses because those people are very directly harmed by people who are using those.

Now, and I'm not saying that's what's happening in this case, but that is sort of the reason that we talk about those diagnoses, not to delegitimize them or to sort of make any implications about people who actually suffer from those.

And I think physiologically, I can understand that if you have Ehlers-Danlos, you're having these, you know, dislocations, and then you're going through this period where it sounds like two years of pain or some symptoms still associated, going through doctors, getting put on different medications.

It sounds like she became much more sedentary over this time.

And I would argue that if there's a time that she would feel dizzy standing up, right, or that some of these symptoms may show up, it would be now.

So, that to your question of does POTS always exist?

I mean, the question is chicken and egg is, is the symptom and the things she's describing more related to this underlying, very legitimate change in her lifestyle and in her activity level?

And, you know, if we have a kid who lays in the hospital with pneumonia, with, I mean, we know it from COVID, you get deconditioned over time just laying in a hospital bed from any illness.

And kids have to go to our, you know, rehab unit to physically rehab just after being sick in the ICU because your body weakens.

So if someone is more sedentary due to all of these symptoms, By definition, getting up at that point is going to be harder.

And so you wonder, once someone is healthy, is it even going going to be as much of an issue or an issue?

Yeah.

And I think, you know, the other thing that tends to be very hard to unravel in like both in cases of abuse and even just for people that are, you know, in non-abuse cases where there's a huge kind of medical odyssey and a bunch of things popping up is then like you're getting treatments, you're on medications.

What is symptoms?

What is side effects?

So it sounds like she was taking quite a lot of medications at this point too, which sort of just adds a layer of complexity.

Right.

And pain medications, you know, do drop certain ones, drop your blood pressure.

And then again, you're more prone to those positional changes whenever you're on those medications.

I mean, you know, most people will tell you they feel a little bit woozy or dizzy when they're taking certain medications.

And so at this point, we are in August.

of 2018 and she gets admitted to Kaiser Permanente San Diego.

It does not specify anywhere if we're still looking at shoulder, if it's her whole body.

I can say there are pictures of her where she is in a motorized wheelchair.

I do not know if if that is true as of admission to Kaiser, but she also is now presenting with GI symptoms and

unable to eat.

And this is kind of that progression that I do start to worry not only about things like munchausen by proxy or anything like that, but I start to worry when the pattern is certain neurologic symptoms followed by certain GI symptoms or certain GI symptoms followed by neurologic symptoms

because there is so much interplay between our nervous system and our GI system.

And once you're affecting both, it just means it's going to be more life affecting for these children.

And often once the GI system is involved, this is when things like tubes and central lines become even more kind of more that the child becomes at risk of needing these things.

And so you're wondering.

My biggest thing in all of this right now is where in the story does intervention happen

to try to be realistic and have a realistic plan of care and a realistic goal for family, for patient, all of them that kind of keeps the escalation in check because you can kind of already feel it starting to escalate at the beginning of this admission.

She's already now been two years with this.

debilitating, you know, kind of unrelenting pain.

And now we're starting to have GI side effects or GI symptoms as well, which Andrea and I know is often a side effect of medications too.

So the question is, did we iatrogenically or did the physicians cause this by medication she was on?

Or is this a second symptom, third symptom, whatever you want to say, of this overarching story?

She has the three diagnoses at this point.

So, I mean, are there known GI connections with those conditions?

Well, I can start with POTS.

POTS itself does not have GI connections.

The idea is the reason tubes and central lines sometimes come into the picture is more of the need for a hydration and hydration status above and beyond maybe what another person would need to drink in a day.

And so whether they are able to take all of that by mouth or are unable to, and then that's how that door is open into the world of tubes and lines.

With Ehlers-Danlos, I did a little digging because

Again, Ehlers-Danlos is often something in pediatrics or in medicine that is a secondary diagnosis, something that you may know the child has, but isn't necessarily the reason they're at least with me in the hospital.

But we do always consider those secondary and third diagnoses as, is this playing a role?

So it does seem like kids with Ehlers-Danlos,

which the idea is that they have hypermobile joints, so their joints are very kind of floppy, but because of that, the rest of their body is overcompensating for their they're always trying to balance their joints.

And the thing is, if your joints are floppy or loose, then there's ideas that like your pelvic floor is loose, which affects your abdominal motility or your GI motility.

Like your chest between your ribs, everything are affected.

Are you more at risk for like getting a bad pneumonia or something like that?

And so I think it's, it's all this stuff that is known to be associated.

So a lot of these kids have maybe slow GI motility, constipation, things that we see in a lot of kids for a lot of different reasons.

It just, again, it's the extremes of it.

So it's the fact that Ehlers-Danlos in and of itself does not cause kids to need a tube or need a central line.

It may be contributing to some of the symptoms, but these are symptoms that can be managed many other ways.

Got it.

And with Ehlers-Danlos, and we'll for sure do a deep dive on this at some point because it is just, again, unfortunately, a diagnosis that is a diagnosis that is like ubiquitous in not only medical child abuse cases, but also

many parents who

are claiming to have been falsely accused of breaking their children's bones bring up Ehler Stanlos as a possible explanation.

So certainly one that is just coming up a ton.

How common is Ehler Stanlos?

It's one of those diagnoses that is much more prevalent than anyone knows.

A little funny side story is that I have a colleague who consistently tells me I have Ehlers-Danlos.

It is like a running joke at the hospital: like, oh, you know, Bex, you know, you have Ehlers-Danlos, haha.

You know what I mean?

And it's because of how I sit and how I position and the fact that I can contort into strange positions.

And then, my, you know, when I get a massage, he's like, dang, what are your muscles doing all day?

And I'm like, probably balancing my hypermobile joints.

So, again, but I think the point is, I think it is much more prevalent than what is reported because I think people do just live with ehlers danlos um there are just as a total aside is there are types of ehlers danlos that are vascular types of ehlers danlos that's when you get into them having cardiac issues and actual problems because the muscles or the of the blood vessel walls are affected and so that you can imagine has a lot more medical consequences the hypermobile type of ehlers danlos is anywhere from you can position yourself in a little bit of weird positions to causing significant full body pain.

But I think the point is, as we have talked about many times, is there are people that truly suffer and are debilitated by things like CRPS, by things like chronic pain.

And I'm sure there is a subset of Ehlers-Danlos that is more severe.

And maybe someday we will have a gene or something else that can diagnose that.

But the point is when the pieces of the story just start lining up in a certain way and Ehlers Danlos is kind of mentioned or comes out, and then there's just this rapid decline in a child that was otherwise thriving for all intents and purposes.

That's concerning because they've had Ehlers Danlos their whole life.

So again.

So it's something you either have or you don't have.

Okay.

Right.

So they would have been born with it.

Now, we could go into the whole, there's that sidebar of Ehlers Danlos with fractures, which it's a whole nother thing.

But

often you wouldn't know in a little child that they have Ehlers-Danlos.

Or, and yes, I'm sure the pain builds up over time just because as we get older and our joints get arthritic, because we're old, that there's then going to be new problems.

The point is that the diagnosis marking the point of no return where they become bedridden and wheelchair bound and needing tubes now to feed, that timeline just is what is so concerning.

So it's a really atypical presentation.

And then you have like, I think what always strikes me often about these stories is that, you know, just sort of the probability that you get into, right?

So now you've had like an atypical reaction to an injury, and then that leads to CRPS, which is extremely rare.

And then, you know, Ehler Stanlos, which, however rare that is.

And then you're in the percentage of people where that's extremely debilitating.

And it's sort of, you get into these tinier and tinier percentages.

And also it's this layering of a bunch of conditions, right?

It's not like, oh, this is your diagnosis.

And of course, that does really happen, but I think it certainly certainly stands out about this story.

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This is the downward trajectory that is both rapid and never seems to have that where it starts to climb back up the other way again.

And if it does, it's this very little just to have it kind of go down again.

So it's the pattern.

Yeah.

So, okay, so where, where are we at this point?

So we are at Kaiser San Diego.

That is where the first NG tube is placed.

So nose to stomach to help feed.

And that's because she was showing signs of malnutrition or weight loss.

And pain is still the word that pops up time and time again.

So she is actually transferred, are you ready, to Kaiser Permanente LA for ketamine treatments?

So what do you think?

Well,

again, for those of us who did not go on the Kowalski journey,

yes, this was ketamine played a big role in Maya Kowalski's treatment.

And so, yes, the combination of CRPS and ketamine treatments is definitely giving me some flashbacks now, I guess, to ground us.

Although I think our relationship with ketamine and our knowledge in general about ketamine has changed quite a lot, even over the last year and a half since the Kowalski case trial took place,

because of the death of Matthew Perry, because of a certain non-governmental official that is running around

being a fan and proponent of it.

So, we did hear from a pain expert from Stanford in the Kowalski case who talked about ketamine, and I believe he he did use on some of his CRPS patients

a sort of like a low-dose ketamine treatment for, again, refractory pain, meaning it wasn't responding to anything else.

And ketamine is a drug that's been around for a long time.

It's used as an anesthetic.

So, yeah, certainly like, and then we sort of talked about this thing of using ketamine off-label, but then, of course, there are many, there are many drugs that are used by physicians regularly that are used in that way because it just the FDA approval process is you know lengthy.

That's an intellectual explanation of my thoughts on that.

My emotional reaction to hearing this part of the story is, oh no,

it really is now sounding very,

very similar trajectory to the Kowalski case.

And I think the one good piece of this is they were at Kaiser Permanente San Diego, which is a very good hospital.

They were transferred to Kaiser Permanente LA.

So it sounds like it was done within the correct channels and going to a place where she was actually in the ICU, it seems, when she got it.

So getting the appropriate monitoring and all of that.

So not cash strip mall ketamine clinics like Dr.

Hannah and Dr.

Kirkpatrick in the Kwalski case with substandard monitoring.

So it sounds like they were probably following more of a protocol of what Stanford is doing.

And

the thing is, she did not improve at all.

They said the ketamine was unsuccessful, but during her time at Kaiser LA, she developed a whole slew of new symptoms, one of which was vision loss.

And this this comes up time and again in the case because the parents thought is that it was related to medication she was put on at Kaiser-LA, which very well, I mean, there are medications we all know with side effects that could be part of it.

According to the documentation by the defendants, there were normal ophthalms throughout that time period.

And despite those normal exams, the parents were still saying she was having vision loss.

So this is a he said, she said of when it came about, what the exam showed.

And just remember who are the defendants in the case specifically?

Oh, yeah.

Oh, there's a lot.

So Kaiser Permanente San Diego to Kaiser Permanente LA.

So this is the treating, according to the treating physicians.

Is that kind of right?

Okay.

But it's going to be the ones at Rady's Children's that come in a little bit later that are the ones that are kind of the bulk of this, the lawsuit component.

But I think these parts of the story we have that help us see how we got to where we are at Rady's and why maybe Rady's was thinking what they were and the parents were kind of coming in thinking what they were.

So it's kind of a good setup.

But at this point, she also developed what are called psychogenic non-epileptic seizures, which pseudo-seizures is another name.

But the sidebar to that is people were still saying, and you will find it all over TikTok rabbit hole, that they are still saying, I am having seizures.

They are just of the psychogenic, non-epileptic kind.

Well, I mean, but then they're not seizure.

Like the word seizure, people associate with it is an actual electric change in your brain that is causing you to have a seizure.

So again, people who truly suffer from epilepsy and seizures, using that term even

is problematic.

But yeah, seizures, seizure disorders are a big part of these cases.

And, you know, unfortunately, the reason this makes a diagnosis that's easy to use by a perpetrator is that it can be very difficult to capture seizure activity

when it's happening, right?

Because they have to be in, you know, they have to either be be under observation in the hospital.

But it is capturable.

Like if you have those, you know, that monitoring going and the child has something that their parent is calling a seizure and they don't see that brain weight activity that's associated with seizures.

Well, that is not.

then a seizure.

So

what is this?

Right.

So it's a version of a functional neurologic disorder, which we covered a lot during the, about the hysterical podcast and the story of kind of mass hysteria or mass psychogenic illness.

The idea is it's our body's outward manifestation of something that is psychologically troubling, or so inside stressors or other things, external stressors that are kind of manifesting themselves with physical symptoms.

And the thing is, vision loss can be a version of a functional neurologic disorder where all of the testing is normal, but the patient truly cannot see.

I mean, in their head, they do not see, and or in their head, they do not feel their left arm or whatever it is.

The thing is, there is no physiologic reason for the symptoms.

And so that's the idea with these events, these psychogenic, non-epileptic events.

So psychogenic, meaning again, it's stemming from something

within us that is manifesting physically.

And then it's non-epileptic, meaning they've been captured on this EEG where you're being put on and it's recording your brain waves and it was not epileptic.

So it is not coming from your brain waves.

And then again, that word seizure technically means those abnormal movements, but realistically in medicine, when you say seizure, it is assumed you mean of the epileptic variety.

So that's why now we're changing it to events.

And I think that is an important distinction too, because even in this story, it's one of the claims made in the report to DCF or to the their HHSA in California was that parents are claiming diagnoses that were rolled out.

And so continuing to say she had seizures, despite it being explained that these were not true seizures.

Got it.

And then also at Kaiser LA is when she gets an NJ tube.

So now we're escalating nose all the way down into the jejunum or into the intestines to feed her.

So that to me implies that something was not going well when they were feeding her stomach.

So again, sort of non-responsive to the initial treatment.

To normal treatment, yep, to treatments.

And this is a kid who ate normally before.

So again, where did we go how are we here now and then her first central venous catheter is also placed during that time maybe it was placed for the ketamine and then stayed in that's that i don't know because there's not a lot of detail um

so i think we both know that this escalation in gi is a big piece and is very concerning and even i think kaiser la got concerned while this is escalating and so the ketamine didn't work which was really why they were brought into the equation and so she gets sent back to kaiser san diego Diego.

And the central venous catheter, too, is hugely concerning in these cases.

And we actually just talked about this for an episode for upcoming season the other day.

And I talked to Dr.

Ken Feldman, who's written about this in particular, about

the risks of having this kind of access in a possible abuse situation.

And also he talked about, you know, he talked to us that there's risks always with putting something like a port in, right?

And usually it's for patients that have to get a bunch of, you know, intravenous medication on a regular basis.

So to avoid, you know, poking them all the time and that kind of thing, or patients who are undergoing chemotherapy usually have a port, in my understanding.

So it's like, but

they definitely weigh that with the risk because there's a risk of infection.

And then certainly if there's any concerns for abuse, then you really have a scary heightened risk of induction.

And it's interesting because when they return to Kaiser Permanente San Diego, it is the first report to HHSA, which is Health and Human Services Agency in California, but that's the overlying agency that manages all the child abuse claims or abuse claims.

And the reason for that first report was some kind of tampering with an IV line by the mother, although it's not clear what that was.

That's what the statement in the initial report is.

And this is where

Again, Shaylin Nino comes into the picture because she is the child abuse pediatrician or one of them in the San Diego area.

And so when these cases do get referred, then even though she was not at radies at that point, she was in a hospital in San Diego County.

So Dr.

Nina gets involved as the child abuse pediatrician.

I just want to take one little sidebar, because again, we're going to do this about a couple of the other physicians in the case.

But Dr.

Ninau, and so she actually was a nurse before she was a doctor, which is interesting.

I was a teacher before.

I think

people who had a career before kind of come into medicine a little bit different.

I think we've had a little more life or living.

And the fact that she was a nurse before, I think, puts a different perspective on what she sees, I'm sure.

And then she decided to go back.

She got her MD in Virginia, did her pediatric residency.

And I want to point out that she is actually fellowship trained in child abuse pediatrics.

So we met Sally Smith during the Kowalski case, and she was what we call grandfathered into the specialty because there were not fellowships when she came out of residency.

Same as me, although I'm not that old.

Pediatric Pediatric hospital medicine is a relatively new specialty.

And so I actually was grandfathered in, which makes me feel extremely old, where there were not as many fellowships offered when I came out of training.

And so just because of my years of experience, I was able to sit for the board and I'm board certified in hospital medicine.

But Shaylin actually did the training and the actual fellowship in child abuse pediatrics and is also board certified.

The time she's called a so-called child abuse expert makes me want to, my head pop off because there is no so-called about it.

Like, I mean, and this is not just because I know her.

I would say the same about, I said the same about Sally Smith, but like, you cannot, if there is anything you can say about a human, like she is a child abuse expert.

I, I mean, I don't know what else to say.

Well, there's actually,

there is no way to have more expertise in child abuse

than being a child abuse pediatrician.

And this is an extremely rigorous subspecialty and it is not a subject of yeah, it is not for the faint of heart, not terribly well paid.

And they are right now just being villainized in many places in the country, including you know, Florida, obviously, with the Kowalski case, Lehigh Valley, Pennsylvania, which we're also going to be covering here in Washington.

I mean, there is a lot of villainization of this subspecialty going on.

Um, it's important to say that there is no legitimate debate in medicine about whether or not this is a real subspecialty.

And if anyone is this specialty, it is Shaylin Nee now.

She has done her time.

She has done her work.

She has, you know, taken courses and classes and can you continued her like continuing medical education to stay up to date in the field.

That's just my sidebar because her name is going to keep coming up.

Well, and I think, you know, I think it's a good, it's a good sort of like preface for us to put on this whole thing, right?

Because I think, you know, what can be very frustrating about the media coverage of these cases

is this sort of like wishy-washiness around some of this.

And like, if you consider it a bias that we believe that child abuse is real and believe that Munchausen by proxy is real and that child abuse medicine is a real subspecialty of medicine, like we're not getting anywhere.

You know what I mean?

So it's like, those are things that are science and data based.

And so we are going on the assumptions that these are real.

Obviously, I think the other side, you know, and that's the reason if you, I saw, I peeked a little bit at the the court filing and you see this like so-called child abuse expert.

We've seen that a ton in these cases, in all of these court filings.

There is this, you know, insinuation that this is not a real subspecialty, that this is not a real job.

So I think like that is a place where, to my mind, when media outlets are covering this, that's something they should debunk for readers, right?

Like that's just like, that's a factual piece of information that readers are not going to be able to understand these stories if they're thinking, oh, well, there, it sounds like there's some controversy over this subspecialty.

Maybe it's not real.

No, the controversy is manufactured.

It's not within medical establishment.

Child abuse pediatricians are not the ones going out and hanging a shingle, you know, in the grocery store strip mall

and saying, look, I'm a child abuse pediatrician.

Come see me.

Like, this is the same thing.

People don't want to see the child abuse pediatrician.

People don't see them.

They don't want to see them coming.

Yeah, it's no, it's ridiculous.

It's not something lucrative.

It's not something you go into for, you know, the honestly, like the reward.

Like, oh, yes, I'm sorry.

You do go into it for the rewards because you are really so important in these children's lives, but you are not going in for the financial gains.

You are not going into it for the reputational gains, speaking to what has happened to some of them.

I don't know, honestly, how we're going to get new fellows in the specialty because I'm really worried that with everything that's going on, we just who would choose this, right?

And that for me, I respect them more for still doing it.

And right now, I fear, you know, I fear that that may very well be the point.

But yes, so I think that that is like, that is something that we will, you and I will both be, you know, as open-minded as possible in considering all possible, you know, sides of this case.

We're certainly going to make every attempt to talk to, you know, talk to both sides.

And the argument that child abuse pediatrics is real is not going to, we're not going to entertain that.

We are not going to entertain that.

Right.

So, Bex, thank you so much for your incredible research on this.

I really appreciate you.

And we will

be back with the second installment next week.

Yep.

Thanks, everybody.

This episode of Nobody Should Believe Me case files was hosted and executive produced by me, Andrea Dunlop.

Dr.

Becks is my co-host and the lead researcher for the Ratty Children's case.

Mariah Gossett is our supervising producer.

Greta Stromquist is our producer and editor.

Aaron Ajayi is our fact-checker.

And thanks also to Nola Carmouche for administrative support.