Dr. Bex

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.

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

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 solutions.

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 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 about

And I think physiologically, I can understand that if you have Ehlers-Danlos, you're having these 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

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 the symptom and the thing she's describing more related to this underlying symptom? 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 sanitary 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 to be as much of an issue or an issue?

Right. And pain medications, you know, do 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 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

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 a family, for a 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?

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 not, 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, um,

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 um

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 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 syndrome 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.

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. Ha ha ha. 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 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.

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 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. 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.

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, cause we're old that there's then going to be new problems.

The point is that the diagnosis marking is, 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.

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 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?

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, you know, 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 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 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 opto exams 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. Just to remind us, who are the defendants in the case specifically? Oh, yeah. Oh, there's a lot. So Kaiser Permanente San Diego to Kaiser Permanente LA.

Right, 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, 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.

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 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. 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 brainwaves and it was not epileptic. So it is not coming from your brainwaves. And then again, that word seizure is, 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 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.

To normal, 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. Okay.

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, wow, 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.

And it's interesting because when they returned to Kaiser Permanente San Diego 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 Rady's at that point, she was in a hospital in San Diego County.

So Dr. Nino gets involved as the child abuse pediatrician. Um, I just want to take one little sidebar. Cause again, we're going to do this about a couple of the other physicians in the case, but Dr. Nino. Um, and so she actually was a nurse before she was a doctor, which is interesting. I was a teacher before.

I think, um, 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 in to the specialty because there were not fellowships when she came out of residency. Same as me, although I'm not that old. 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's anything you can say about a human, like, She is a child abuse expert. I mean, I don't know what else to say.

And if anyone is this specialty, it is Shaylin. She has done her time, she has done her work, she has taken courses and classes and continued her 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.

So our first disclaimer is actually that Andrea and I both met Dr. Shailen Neenau, who is one of the defendants in 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.

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

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. 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 right now.

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 going to 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. 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.

the who what when and where of this story um so yeah so bex uh tell us tell us what this story is about who are we talking about so this all started um 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 Kowalski, Justina Poletti are these names that you'll hear kind of coming up. So her name is Madison. She was born in 2003.

Interestingly, 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 jumpstarted 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.

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 school 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. diagnosis of the shoulder dislocation.

She has her first surgery, which is 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 Rady's. Her pain was still severe. At that point, she was on what's called a 504B plan at school.

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

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 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 Radiesse 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 Rady's during an admission for severe pain after this surgery. So now two surgeries and still with severe pain, unrelenting pain. She is admitted to Rady's and she is diagnosed with complex regional pain syndrome, which

Anyone who went with us in the Kowalski 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 Rady's, that she go to an inpatient pain program.

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 area. 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. But it is still rare to have to be admitted actually into the inpatient unit of a hospital. from pain or 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.

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 programs,

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 they that their joints can dislocate easier than you know anyone else's would.

A clinical diagnosis is a diagnosis that relies on the story and the symptoms that are being described more than anything I can do a specific test for or a physician can do a specific test for. So often there is no lab diagnosis, MRI diagnosis. It is ruling out other things sometimes and then being left with the story and the symptoms fitting the condition.

The problem is in medicine, there are a lot of diagnoses that we don't have that one perfect test for. And I think I was just talking to my friend this week about how in pediatrics, I think it's even a little bit different because we're not relying on what the patient is telling us. In some cases, we're relying on what the parent is telling us.

And pediatricians in general are trustworthy people who is taught and is trained to listen to the parent or listen to the story and try to come up with a diagnosis.

The question is if they're eating and they're doing okay is the difference because there are kids who are not supposed to be taking oral or whatever and they'll get in trouble, right? But if you're having a kid who's eating, I'm just hypothetically, you have a kid who's eating pizza and doing fine or eating all this stuff and doing fine, you have to beg the question of why you have a G-tube.

Most parents don't want a G-tube. And in fact, I've been involved with lots of ex-preemies where they needed a G-tube for growth and development and the parents so wanted them to eat from a bottle. you know, and they were begging, can we do anything but the G-tube? I want my kid to be normal and well. So that's, that's my experience. And so, no, it doesn't make, it doesn't make any sense.

And I mean, there's going to be conditions where you're, like I said, you're going to be doing some oral, some G-tube, but there's usually, it's transitional usually, unless like I said, this, someone had a horrible esophageal cancer and they had to do some reconstruction. And it's like, you can take some from up or you had cancer in your neck and

You can take some from up, but you'll choke a little bit, but we have to make sure you get enough by G tube, but that's not the case. No, no. If you're eating pizza and pepperoni and all this stuff, it's probably not.

In medicine, we rely on the honesty, integrity of the parents trying to help their child. And unfortunately, in child abuse and medical child abuse, the motivations, I'm not a psychiatrist, but it's not what we're, we don't have a shared mission of getting this child better.

So therefore, this, we have to be kind of more sleuth and ask, look for what I call the big disconnects in what we see and what we hear, you know, with these patients. Yeah.

Jill Glick at 65, my medical record, the University of Chicago, has a lot of mistakes in it. I don't have diabetes. I don't have COPD. I can't get my record fixed because my primary is not at the University of Chicago. He can't go in and get rid of it because somehow that got listed by a mistake and there's no quality improvement.

When I was a resident, the residents always look at me and roll their eyes. I said, when I was a resident, you got the medical record and you opened up and the first page was the problems list and you took your pen and you crossed out the ones that no longer existed and you made a new progress. You said, these are the current medical and these are your chronic diseases. That

Communication's been lost. So Munchausen by proxy cases, MCA cases, we help that process by not having universal medical record. Everybody should have a baseline universal medical record. And the people who make a lot of money off of Epic, I mean, Judy, whatever her name is, God bless her. She was a smart lady in 1970s to come up with electronic record. And I was like, this is so cool.

So that adds to it. So part of one of the things I would always love is that there be a national requirement of all electronic records have to talk to each other. And not just talk to each other. Show everything. Like right now, if I go into another hospital, I only get like little snippets.

Having the youngest daughter with her always sometimes in a wheelchair walking around, sometimes with leg braces on walking around.

There are outlying doctors that just suck up these cases. You know, there are cowboys out there who just have odd beliefs that, oh, yes, everybody they see has Pott's disease or everybody they see has chronic Lyme or whatever. And they come up with these diagnoses and literally they do very well.

diagnosing these oddball diseases, which probably exist in a small number of people, but everybody they see has that disease.

Oh, yes. Oh, yes. They just flock to them. There's a problem in the medical care community, too. There's doctors who make the same diagnosis over and over and over. And the mothers get online and they say, oh, everybody that he sees has mesenteric artery syndrome. And that if you go there, you'll get surgery for that.

Now, what happens most of the time is that doesn't cure the pain, strangely enough. But they still go and they still get their surgeries.

Exactly. Or the pain is totally unrelated.

The other problem is that once these kids get to be a certain age, they're very much part of the problem. They're very much trained to be in constant pain, in constant distress, unable to eat. Whatever. And then, you know, then it's a real hard problem because to turn that around is really an issue.

Right, the complaint of Madison Meyer. So this is what we had focused on prior to this was the complaints and the court process that was kind of going on between the parents, William Meyer and Dana Gaske, against the defendants, including Rady Children's Hospital and then the County of San Diego and all of the other defendants that kind of came along with that.

Now we started jumping into the story of Madison Meyer, who rejoined, kind of came back in, or we started to hear about again in 2023. And then now we're at the third amended complaint by Madison Meyer since the two, Court cases have been merged, so now it's the parents and Madison are all involved in one kind of court proceeding.

And this is the third amended complaint that actually just came out this year in 2025 and just very recently within the last couple weeks. And so I just looked last night, and there has been a response by the defendants to basically – you know, dismiss the whole claim, the whole thing, but the judge has not responded. The court has not responded. So that's where it stands as of recording today.

And now what I wanted to do is kind of go through each of the claims that are standing right in front of the court right now, hoping that maybe we can talk a little bit about them and kind of see how we're feeling or thinking. And then that way, when the response comes or things change,

happen, then we can kind of keep going forward with the case and following along kind of in real time from there.

So now they're just going claim by claim and using all like kind of the legal terminology and really stating out why each of these claims should hold in their mind. And then I guess it goes to the defendants to come back and say if there's kind of legal precedent in cases that would justify dismissing any of these. And then the judge kind of decides. But at this point, this is where we stand.

So I'm just going to go complaint to complaint and then kind of let I have some questions for you specific to each one, just because, again, from our experiences and then my experiences, you know, as a physician, I think we kind of have a unique approach. ability to just kind of talk them through, I think, before we know where everything goes from here.

So the first complaint is a violation of federal civil rights. So again, like we talked about, we are in federal court for this case. So a lot of the claims are going to tie back to federal statutes or even amendments to the Constitution or things like this one goes into the American Disabilities Act.

So again, it's all going to kind of tie back to those kind of federal statutes when they make the claims. So the first one is a violation of federal civil rights, and this is on the unwarranted search and surveillance and the invasion of privacy. So the kind of the basis or the gist, if you read all of the parts of this portion of the complaint, are speaking more to the video surveillance.

So like we talked about last time, it was. Those, I believe at this point they were saying 38 days of video surveillance that occurred in the hospital room of Madison, 24 hours a day, seven days a week, and involved the surveillance of Madison and her parents at any point that they were within the hospital room.

And the claim states that these efforts or the efforts to do the video surveillance were basically undertaken in an investigatory capacity. So they are saying that it was the express purpose and intent of uncovering evidence of child abuse, if such evidence even ever existed. And then they even say in an effort to uncover or manufacture evidence of child abuse.

So we talked a little bit about this last time, but what are your thoughts on that kind of the word, the parentheses or manufacturer kind of stuck out to me a bit?

I mean, it's it's interesting because I feel like they are sticking very much. Right. And I think we when we read these claims, I've now read so many like I feel like they stick to the script like they they know the terminology. They say things that kind of fit like it is a complaint or it is a breach of this federal statute because of this, this and this.

But that little parentheses or manufacturer that just felt a little bit. felt to me a little bit more emotionally charged or kind of like they were throwing that in as more of a, so maybe you don't think the surveillance is bad, but what if they were manufacturing it, dot, dot, dot. And then it kind of goes on to the next, to the next thing.

And so I think, I mean, to me, it sounds like it's intended to kind of get, kind of grab your attention or make you think, oh, wait, was this intentional or something? But that's my own experience.

And I think the expectation of privacy in the hospital room, I think, again, right now, it seems like it's very hospital dependent based on what the hospital's individual policies are, whether hospitals have private rooms or have double rooms, or how many patients are in a room, because right then and there, you've lost some of the privacy aspect.

For instance, in an emergency room where there may be curtains separating beds, what is the privacy versus... in a case where, you know, it is a private room with its own entrance. And so I think the way hospitals are changing more to having private rooms, which as a mother, as a patient, I think is wonderful.

But does that change, I guess, that overall assumption of privacy that maybe a family or a I guess time will tell or we'll see how this case or other cases go. And I think I just wanted to briefly touch on the different amendments because I think I took government in. high school, at AP government. And so I was like, I'm just going to brush up a little bit.

But I think the three amendments, just for those that have been following along with us, that really come into play in most of these cases are the first, fourth, and 14th. The first speaks to, and it comes into this claim, this idea of the right to intimate association or the right to familial association, meaning, I guess, this idea that

It protects intimate association or your family's association with each other from kind of intrusion by the government. And so this question of if a family is having private conversations within a hospital room and they are assuming, I guess, that they are not being surveilled or watched.

You know, is it OK to be kind of being through this video surveillance, also listening in potentially on private family conversations? The Fourth Amendment is the one that is search and seizure. But they bring this in about kind of protecting a family's home.

So in the sense of if CPS shows up at your door or Child Protective Services shows up at your door, do you have to let them in or in a hospital situation like happened here? They basically called the dad, it sounds like from the court documents anyway, into a room to tell him that his, you know, at that point that the custody had been changed to the to the county of San Diego.

And he did not get to go back in that room from that moment. So this is where the Fourth Amendment plays in, I think, is the seizure aspect, but also the coming into your place that is assumed to be yours or your private space. And then the 14th is probably the one that gets, I think, interpreted in a lot of court cases. So there's a lot of case history that you can go back to.

This is that due process doctrine. So the idea that you should be protected, your decision should be protected, and basically nothing should be able to come to you without due process. So meaning that you deserve due process before any of your rights are taken away. And so this is the parents' rights Really, I think their hub is this is the 14th Amendment.

And so all of that is used in this first claim regarding the video surveillance as it's an intrusion into a family association. It's an intrusion into, you know, a family's privacy. And then the idea that should that freedom be taken away without any due process. So like basically without the family being aware.

So the next claim is another violation of federal civil rights. And this one talks to the deception in the presentation of evidence and false reporting. So we did touch on this a little bit last time. But this concept of, you know, the wording in the lawsuit says that these defendants basically knowingly falsified child abuse reports, that there was knowingly false evidence and

and that this decision to remove the child was based on a juvenile court order, which the defendant fraudulently obtained, caused to be fraudulently obtained, or knew was fraudulently obtained. So again, the words false and fraudulent kind of continue to come up.

And then they even say it to the point of that these defendants acted, agreed, and or conspired to employ these tactics and then to continue to employ them basically to extend the I think the time that she was detained. And so I think I've said this probably 100 times on the podcast, this concept of conspiring in medicine.

When anyone who lives in the world of medicine knows that it is difficult to get three doctors to agree on a diagnosis, sometimes let alone get a group of doctors that would all be willing to conspire, quote unquote, against a family, I guess, as as some of these cases have claimed, that seems very far-fetched.

And that's because I work in this field and I cannot imagine walking around being like, hey guys, we should really, you know, do this and having everyone buy into it. It's just not how kind of things work. We all have our own set of, you know, principles. We all have our different specialty. We all have things we're coming in with previous experience.

And to me, the word knowingly, and I'm going to ask you kind of what you think after, but this idea of intentionality, right? That it was intentional, right? you knew you were lying and you lied, or you knew you were falsifying and you falsified. So to me, that is, I am looking at a lab result that says a child's hemoglobin is low, meaning his blood count is low or he has anemia.

And I knowingly look at my report and I'm like, well, patient's blood count was normal for age. Something that is so drastically, it is right in front of you and you are writing it a different way. To me, that is knowingly intentionally falsifying. The thing is, a lot of medicine is still subjective, meaning you can have three x-rays, 100 labs, and you're looking at everything.

And it's kind of how you, based on experience, based on knowledge, based on your specialty, how all that ties together into a diagnosis is not so objective all the time. And so I think, again, the way things are worded or the way someone interprets Information. That's why you have another side of the story. Right. It doesn't mean they're right or wrong.

It means that in their medical opinion, this is like how to interpret this data. And so I think it's that intentionality that I know they say because it makes it more a stronger case, I think. But what what are your thoughts?

And I think we put stuff into the medical record. We know that is forever discoverable, forever there. It is not hearsay. It is, you wrote the words. So again, I think we, I would hope most physicians are doing that with a I am not going to write something that I did not see with my own eyes.

It is something I know I heard and that usually someone also heard, like meaning a resident was with me and can also document that they heard it or a, you know, nurse was in the room. And when you say in quotes, you mean like mom says.

And again, I would only quote the part that they said. That is something that goes back to my training, but also I could see where that could be human error. So I think having another, you know, having someone else there and being able to say the same thing or also being able to document in a note what they heard, I think is useful. Because it is going to turn he said, she said at that point.

Yeah.

claim three for the unwarranted nonconsensual medical procedures and examinations. So we talked about this last time with that swallow study that we went into a little bit of detail about. And I think it also speaks to the covert video surveillance in the sense of if it was used for diagnosis of Munchausen by proxy, then it is a diagnostic procedure.

So then they should have been notified of it like any other diagnostic procedure. This seems like a little bit of a catch 22 to me because it's, if you're using it for the word diagnose, okay, then it is a diagnostic measure. So I see how it fits under, does it need consent or not?

I guess under that, what we were talking about last time, like would this hospital consider it a procedure that requires a consent or not? And then, but if you, See it as they were coming in with this covert surveillance to manufacture, I think was the word, evidence of abuse. Then was it for diagnosed? Right. I think it's kind of it's used a little bit in both ways.

And I think a swallow study, too, if the parents did refuse that, would that be something you would then go to a court order for, to be honest? Because, I mean, I'm thinking for me, myself as a physician, feeding through a G-tube is not...

I'm sorry, sometimes I have to tell a family, look, if that's the one thing they need to be safe and be healthy, big picture, it's a little procedure, you know, like you get a little tube. I can kind of say it that way in the sense of if they can still live their life and do everything else, then isn't that great?

But at the same time, you're saying, but if they can eat, why are we doing it this way, right? I mean, like if they don't have a physiologic reason they can't eat, is it harmful to then not allow them to?

And so number four. So this is where we start getting into the question of Madison having the diagnosis of hypermobile Ehlers-Danlos, along with the other things we've spoken of. This one is now a violation of federal civil rights that they failed to provide adequate supervision, safety, security and health care to her.

And the idea that she was under the custody of the government at this time or under the custody of the County of San Diego. So now we're talking about the time from that shelter or detain order forward, which we don't have a lot of information about in the documentation.

But the idea that if the government has custody of a child, they owe them reasonable safety, minimally adequate care, and then also appropriate medical and mental health care, which I think should go without saying, but also it is stated. And I think...

We have talked about before when a child is in a hospital, I think that there've been times where they become less of an urgent priority to get them into placement elsewhere, like into a foster care situation, because a hospital is seen as a safe and healthy place for a child.

And so their argument is, I think that the defendants were aware of her true medical condition, which implying they list off, but hypermobile Ehlers-Danlos is at the top. And that they failed to investigate the actual cause, failed or refused to provide treatment. And then they do get into this use of unapproved and unauthorized hypnotic techniques to inject false memories.

So this plays into the whole sexual assault claims.

Correct. And I think this, yeah, this wouldn't have been available or information that was in the parents' complaints just because we didn't know this piece.

But I think it always makes me think, and this makes me think of the Kowalski case that Andrea and I covered a couple years ago, this idea that I looked up for myself, and as we said, we will probably speak, hopefully speak with an Ehlers-Danlos specialist, but kind of what the standard of treatment is. And it

it starts on patient education, lifestyle changes, teaching awareness of their own body, self-management techniques, physical therapy. It lists as the cornerstone of Ehlers-Danlos care. And then pain management, obviously starting with non-opioid pain medicines and so on. And then you start getting into kind of managing the coexisting conditions that come into Ehlers-Danlos. So

Those foundational things, to me, in most hospitalizations, those very basics are available, are being offered to a child. So again, because we don't have the medical records, I cannot speak to exactly what her treatment plan looked like. But to me, this feels a lot like where they were saying that Maya Kowalski was being treated as a Munchausen by proxy victim as opposed to a patient with CRPS.

Right.

Yep. One of the, we'll talk quickly about the Americans with Disability Act a little bit later where we talk, there are a few specifics mentioned, but I think this one as a physician really stuck out to me as it I kind of feel like if we are doing the standard of care, like does every child look forward to PT and OT every day? No, like there are times they may have pain after it.

So we have to talk about like, how can we make it work for them, make it work. But I still think that as long as you are following the standard of care, I guess at that point it becomes,

what if the parent thinks the care should be different and I put myself kind of in this in this position and I've thought about times I've been in it like a parent says they want a lumbar puncture to know for sure that something doesn't exist but in my medical opinion it does not exist based on my exam and that is a procedure I do not feel is warranted and I therefore won't do and

Can a parent make me do a procedure I don't want to do? You know what I mean? And where is that line of what if one specialist says, oh, do the lumbar puncture? OK, but what if what if I still don't know that in my experience that is standard of care?

I think these questions are going to come up more and more because there was a time when a parent wouldn't even know to come in and ask for a lumbar puncture. Frankly, you know, so now they know how do we navigate that? And that's what this I think what this claim really brought up for me as a physician was thinking about these things.

I think what we strive for, but it's getting harder and harder. I'm not going to lie. As a physician. Physicians do have to draw boundaries, you know.

So claim five and six both speak to this idea, kind of like what we were already talking about. But the first one is about in the creation of the case plan for Madison, that they should have been taking into account all elements of her medical condition.

and that she should have been aware of this case plan and kind of how these discussions went down as far as the case plan, meaning where we go from here, it sounds like. And then going into the Americans with Disability Act and the Vocational Rehabilitation Act, the idea that Madison had a disability and was she in any way kind of discriminated against based on that disability.

And so I think all of these counts get to the heart of if standard of care or if what is needed for this specific child with Ehlers-Danlos is seen differently by the parents and by the physicians taking care of her, how do you reach that joint decision-making?

And if the hospital or doctor is potentially going down the path of what they see the standard of care to be, or the hospital sees the standard of care to be, then how do you even play out one of, I think, one of these lawsuits in the sense of If we started from different points, can we ever kind of see it the same? And then the idea of this being a disability.

So I did look this up just so I could kind of speak a little bit to it. But Ehlers Danlos in and of itself is not in this blue book that the Social Security Administration puts out. for like standalone diagnoses that basically put you in the ability to be able to have like disability services. And so it is seen as a disability, but it is not in that book. It has to be Ehlers-Danlos plus.

So Ehlers-Danlos plus some like substantial functional impairment, inability to maintain walking or standing for long periods, chronic severe instability or pain, things that are actually interfering with your ability to, to work, your ability to, I think it says to perform, quote, substantial gainful activity.

So basically, does this diagnosis have enough of these other features to say that it would do that? And I know that's not really what these claims are saying, but the idea is they are claiming she does have a disability. So by that definition, she would meet those criteria. And then did the hospital, did the physicians consider

potentially withhold or discriminate against her in any way based on that disability. This is where one of the specifics comes up. The idea that they denied transfer to a facility that specializes in Ehlers-Danlos. I don't know what the specifics of that were. the use of an appropriate wheelchair, her use of her phone and her tablet were things that were mentioned.

And again, as a physician, I was thinking through this. If physical therapy evaluations are saying a child has the ability to walk and therefore we are working on them with that, We tend to opt for the least invasive and using maybe the other one as a backup or something like if it is needed, this can be a bit of a gray area.

If you send someone home with a walker or a wheelchair, it is very easy for that to become what they need and what they use. So often we put kind of timelines on things like, We will send you home with this, but you follow up in this long. And then we'll kind of keep reassessing whether this need continues. The hard part is you can buy these things on Amazon now or anywhere.

So even if we don't order a wheelchair, they can still get a wheelchair. So again, this is a slippery slope that as a physician, I can read my own way based on my own experience. But this question of the appropriate wheelchair is, Is was it the physicians thought one thing was appropriate and the family thought another? Is that grounds for, you know, a lawsuit?

Or is that discrimination based on the disability? I think these counts all just kind of keep bringing up these things. And I did look up in Ehlers-Danlos. at least from the data we have, it is a small percentage of people with Ehlers-Danlos and usually on an as-needed basis that a wheelchair is needed. So you're going to spend the day at Disney.

Maybe that may be a long day and you may need the wheelchair. So it's that as-needed basis and then still a very small percentage. So I don't know what your thoughts are.

Yes, at least from the point of view of these complaints, it was while she was underrated children's that they're claiming she was, you know, discriminated against.

You know, it's kind of the reading between the lines. But I think also I've thought about the whole discrepancy in health care where, you know, a family can take up a GoFundMe to get the fancier, more motorized wheelchair. But I have children on.

You know, the CMS plan, which is like Children's Medical Services for complex children, children who live in, you know, maybe nursing facilities and things like that, who can't even get the very basic wheelchair, who need it. And so I do start to think bigger picture with some of this stuff that it is sometimes, like I said, ordering it on Amazon or taking up a fund for something.

It doesn't really matter what. the doctors say. And this is a scary piece of the world to me as well, because I've told you time and time again, my goal with any child is, is getting to be a kid and getting to live life to the fullest. And like, if you want to play baseball, let's find out a way you can play baseball. Like if that's your dream, you know what I mean? Like what could we do?

Or really, is there no way that it's safe because of your condition? And I think, um, That's that idea of like where Make-A-Wish came from, right? This idea of doing that thing that maybe you never would have gotten that chance to do. Like we want them to feel like kids and be kids. And I think sometimes when the two concepts go very awry, that is a tough decision as a physician.

Like if I am writing an order for equipment It is something that based on the evaluation we've done, we have determined is medically necessary.

Writing it because a family wants it or I don't know, that starts to cross into, you know, unethical territory for me, at least assuming I am looking at the whole picture and I'm listening to all sides and I'm seeing what I'm supposed to see as a physician.

But it is a slippery slope and I think we've seen it in these cases and that's why, you know, these things kind of jumped out at me, I think specifically.

And it goes into the education system. It goes into every aspect of this. Like there are kids, I've talked to families about getting like a 504 plan for a child with true disability and how many calls a family has to make and how many meetings and how many things.

And yet some of these children that I have met, I'm saying over my whole career, that are developmentally normal, who could excel in a normal classroom, who these parents do fight to get them these services. But there are only so many services to go around. These things are finite. And it is not just they may have a wheelchair.

They may have the wheelchair embroidered with the child's name, with all of the newest things, with these things that money does not come out of the equation. There is some piece of that. And the number of times I have fought for a patient who needs to get a G-tube, but whether it makes sense for that family socially, economically, and yet... Other people can come in and demand one and get one.

It's really the system is it is entering scary levels. And I think, again, we will see how this case specifically plays out. But this does bring into question, I think, a lot of what we do in medicine in terms of

So trying to get a child home and trying to get a child to function and trying to get a child to be as childlike or as like be as much of a child as they can, if we are working against each other in that, we're going to hit impasses, I think, on all of these things. Yeah. And the next couple of claims, it's the Monell related claims or claim seven and eight.

That is the exact same claims, this idea of the medical procedures, the deception of evidence, but taken to the level of policy. And are there policies that basically promote these things or are there not policies to prevent these things?

Right. And then the ninth claim is the UNRWA Civil Rights Act. This is, again, speaking to if you are in a business in California, they shouldn't be able to discriminate against you. So the idea of the hospital as a business and therefore the same claims just under a different act.

And then the last claim that Madison brings in this third complaint, the 10th claim that she brings is denial of access to medical and mental health records.

And this is a very short claim and it doesn't give a lot of detail, but basically the statement is that she herself made multiple requests for a complete copy of her records and that there has been refusal on the side of Rady's and the medical defendants in this case. to not comply with these requests.

Again, I think at this point, this one is going to be probably he said, she said, or they can go back to any email communications and kind of see what holds water. But this to me, I mean, again, I think curious to see where it goes, because if this was done all legally and she was requesting the records, you know, where does that line cross? And I think depends on the state.

It depends on the county. It depends on the institution, all of those specific policies.

So now this is where we are today.

So there's the county and their defendants, Rady and their defendants. And so from what I could see, again, it was I just looked last night. They have just filed a general dismissal of all claims. And so that's the last document in the court doc right now. I don't know if they're going to come back specifically with each individual claim as they did yesterday.

With some of the parents complaints or they're kind of trying to kind of close this on a bigger picture point. And then that's where it stands. So I think.

At least now on this claim itself. And so I think we will know now, I think, how it goes forward as far as the delineation, which this gets into some of the legalese of which plaintiffs are claiming each. Like, you know what I mean? Is it still going to be parents have claims and Madison has claims? Is all of that going to be combined?

And then which defendants will be potentially taken off completely, which can happen? Will they combine defendants or and then which of these counts will actually even happen? stand at the end. And so this is, I think, a very, very important part of this process is where we stand today with, I don't know what the timeframe that the judge has to come back with their response.

But it sounds like that's going to be then what goes forward. And that will be the point at which they determine if this is going to head forward into trial or settlement or kind of where it goes from there.

I think this is a, I mean, it's a very slippery slope, I think, and it's difficult to kind of tease it out. But at the end of the day, physicians should not be seeing some of these diagnoses on a problem list and necessarily changing how they address a patient when they're in front of them, right?

So someone who presents with right lower quadrant pain, that's the lower right side of the abdomen, and they have fibromyalgia or chronic fatigue or any of those things, if they have point tenderness in the right lower quadrant with associated symptoms, you should be looking for appendicitis, right? It doesn't matter what the backstory is.

I think what becomes hard is exactly what we've been saying all along, is it's the patient with those diagnoses, with a whole list of those diagnoses, but there's not a timeline or a good story for how those diagnoses came to be. And then that all the actual testing, all the things that came along the way pointed in another direction, but those things are still considered to be the diagnosis.

Or they didn't take any of the recommendations to go into one of the pain programs that have been extremely successful in in helping patients with some of these conditions. And they said, no, I'm not interested in that. I'm not interested in that.

But they're interested in the most extreme treatment options or that it's the case that is the only one ever that didn't respond to X, Y, and Z. I mean, as we saw with CRPS,

The most common treatment is physical therapy, occupational therapy, psychotherapy, under the care of a pain medicine doctor to maybe use medications as you're going through those processes that might be painful for you versus you go to the biggest gun pain medicines before you've stepped up. you know, on all those other options along the way. So I don't think it's just the diagnosis.

I think it's the backstory and the whole story. But as a physician, it is really hard, and I've said this, to look into every patient's backstory. And I mean, I'm in pediatrics, so that means only to age 18. What about you get a 70-year-old with this list of diagnoses? How could you ever go through? And when they were younger, there weren't even electronic medical records, right?

So I'm at least in a little bit of a better place where a lot of what people have now is in the electronic medical record. But it's still difficult to go back and find where did all these come from. So I think my antenna or my kind of concerns start to go up when it is so many of these. And yet along the way, certain options haven't been pursued.

And then along the way, when other diagnoses were suggested, they were kind of denied by the family. And then that you can't even kind of follow that path to find how this all came to be. And that's when I start to not necessarily get worried about medical child abuse, but I start to kind of want to know more or at least want to dig more in those scenarios.

Yes. And I think seizures are one of those things that I've actually gone down the rabbit hole a little bit as well, because I have also questioned the whole idea of how much are the doctors culpable, right? And this I'm sure is a touchy subject for some physicians, but I will stand here, sit here and say that I have been complicit before because I didn't know, or I

it was too small of a story at that time, or they came with a G-tube and G-tube feeds, so I continued them, right? So I can honestly say I have been complicit. At the same time, when does that become a true problem? And I think that's the same as when does medical child abuse become more your concern from just...

anxious parent someone who comes in and wants to know if their child's having a seizure and you hook them up to what's called an EEG and they have one of the episodes that mom is concerned about and you can say on the EEG this is not a seizure and you can see this light like their their shoulders you know relax that this idea that I can sleep at night knowing this is not a seizure and

The thing is, some of these patients have been on multiple EEGs multiple times, and a seizure has never been caught. Then they go home, and they come back, and they report the worst seizure that ever happened. The patient turned blue. They had to give them CPR.

And so any physician who is hearing these stories is going to start saying, OK, so the EEG is normal, but the story they're telling me is a child who could die of a seizure at home. So when do I start medication? Right. I mean, because there are times where an EEG can look completely normal unless you capture the event.

So if these events are happening once a month, do you hook them up for a whole month or do you hear the story and say that is concerning enough to me to start a medication? So that is where I think these kids do come to me already on two or three medications and.

Because if you look back over the timeline, the story has only grown over time from they do these staring episodes to now they're turning blue and I need to give them CPR to now they're lasting 30 minutes and I have no way to stop them. So again, the story escalates and escalates and escalates until somebody gives them the medication. And then at the next place, it escalates even further.

And again, negative testing can prove certain things. ever disprove something completely. I mean, I'm sorry, I can't, but there are certain situations and I think the patterns show that there are certain conditions and certain things that do come up because they are those ones that leave gray area.

Like they have congenital heart disease and you're like, well, we did an echo. No, they don't. Right.

Hi, Andrea. I'm good.

And I think it's interesting that, so I am a huge fan of support sites for people.

So the idea of MitoAction is that it is a site to gain information for families, for those suffering from mitochondrial disease, for those who know people with mitochondrial disease, that they can get more information. Their mission statement is basically that we want people to learn more, understand more, and we want to be a source for them.

And we also want to give back to people who are suffering from this and, you know, help them get make a wish trips or, you know, fund different things that these families might need. So I think it's a beautiful concept. And this exists for pretty much every condition. under the sun now because of the internet and everything we can do.

So I am concerned because there was a time when these support groups, I would say, were the best thing that happened. We have a camp here in Florida called Camp Boggy Creek.

where kids with say there's a diabetes week when all kids with type 1 diabetes go to Camp Boggy Creek they have endocrinologists on staff to administer insulin and to keep track of the kids but they can meet other kids who have the same condition and then the parents can meet other parents and I think it's brilliant I mean it's it really helps these kids and it really helps these families and

And now you have things where I am disappointed to see that things have changed a little bit. And unfortunately in this world, as we've said, there are people with good intentions and people with bad intentions. And if you read Mito Action, it seems right off the bat that they have good intentions.

But I can tell you there are sites for congenital heart disease and asthma and leukemia that don't have a whole section called How to Respond to Allegations of Medical Child Abuse. That concerns me, that it has to be on their, basically on their main page with a link to this area.

And if you read every little subsection, there's a sentence along the lines of, this might actually deter a physician from considering medical child abuse if you do it this way. Or be careful because this is one of the things they look for with medical child abuse. This is a red flag for medical child abuse throughout the website. And that is a red flag to me. That's concerning.

It's implied throughout this site that this is happening all the time and that it's almost a witch hunt where we're going on Facebook to find every parent who might be a perpetrator. No, it's coming in front of us and we are seeing- Something that you absolutely have the time and bandwidth to do. Oh, I mean, it's all I do. I mean, I should talk. I do go down rabbit holes, but that's not it.

And I think it's true. It's the way this whole site, it just really bothered me because it'll be, it talks about communicating with medical professionals. I think that's important. Parents need to know how do I advocate for my child? I love advocacy is a huge word that I take very seriously. You do advocate for your child, but I as a pediatrician also advocate for your child. Like

Like I've had to go to bat with, you know, the MRI team to see, can I get an MRI done today? Because I'm truly concerned about this patient. So again, I am also advocating for children every day. But to start that paragraph with, you're going to find yourself advocating for your child when they have a complex condition.

If the child is capable of advocating for himself, by all means, allow them to speak to their doctor. This is good practice, but can also protect the parents against concerns for medical child abuse. I mean, again, why not just say it's good practice? I mean, I love talking to the kids because I feel like kids are freaking brutally honest. But they also they can tell some of their own story.

And why is that not just good practice? Why is it do it so you don't get accused? And that's how all of this starts.

I mean, again, it's targeting every – I don't know. It just bothers me because it's like you may be trying to help the good parents. Like I want to believe that, but truthfully – How do you know? So you are enabling the ones who are abusing. This is a net that you're just casting out into everybody out there.

So you're not caveating it with, hey, if you really are abusing your kid, don't do these things. No, you're telling them to delete their Facebook accounts. Right.

Exactly. And I gave the example, I think on one of the other ones that was not remembering your kid's birth weight, like when you're in a really stressful, like, you know, in a situation, how much did he weigh when he was born?

Oh, I can't remember if it was him or the other one or my other five kids, whatever that how much they weigh versus they had the cord wrapped around their neck to the point they needed CPR and they were put intubated and put in the NICU for three weeks. No, they weren't. Right.

I mean, that's two completely different things.

Oh, so much.

I have so many little comments. But I think the other big thing is they recommend to families to bring medical records with you to the appointment. Bring all the medical records that confirm the diagnosis. Yes. That worries me as well.

So if you are only bringing the ones that confirm it, but you're not bringing the 10 doctor's notes that said they think it's something else, you are not bringing the whole story. I mean, the saying they have it is not necessarily the right answer. Again, it's saying there could be a test that was False.

For instance, kids sometimes get stool tests when they're or tests of their poop when they're doing a clean out. So they're like getting a bunch of medicines to help them poop. If you run a stool test on that poop, it's going to be different than on a day when you're just having your regular poop. I can't believe I'm saying this so much.

But at the same time, if you've done that test once and it was positive, but then they're like, wait. They were on all these medicines. Let's confirm it. And then you do two confirmatory tests and those are negative. Should you only bring the one that said it was right?

So they're almost telling them, choose your story, like go back through and find only the papers that say what you want them to say. And I think that's inappropriate in the world of electronic medical records. The idea is we can see everything. All of them. And again, you may still come to the conclusion.

Right. And they say, you know, sometimes parents have to mislead medical professionals, but they harbored no intent of harming anybody. That doesn't compute to me.

I mean, again, I want to know the story. And if a parent is concerned, I want them to tell me what they're concerned about. I don't want them to make up a story to get me there, right? I want them to say, this is what happened. But I watched a movie where a kid had something very similar and he had a brain tumor. I'm scared, right?

Because I can have that conversation and maybe we can talk and I can come up with a way to explain why I think this situation is different. But at the end of the day, that parent... I can talk to and I feel like I'm not set up to already fail or to be told.

It says here, it says a parent may state to a Mito specialist that child is having seizures, but a subsequent conversation between the specialist and the neurologist indicates she's not. Or a patient may represent that the gastroenterologist instructed them to go off a medication when that was not the case.

Such misrepresentation is done with no intent to cause harm to themselves or their child, but it is misrepresentation nonetheless and has a strong impact on the family and the relationship with providers. And then these can come back to haunt you if you're ever accused of medical child abuse.

Like I said, I'm trying to put myself in the mindset of I really do have a child that was diagnosed with, let's say, Milos, one of the mitochondrial diseases that I do know a lot about, one of these genetic conditions. And I want help because I'm scared. And this is where I go.

Like, I just think it sets up the medical profession to already they're going to be doubting us and it's going to already impact that relationship. I mean, they right off the bat tell you who in the hospital is a mandated reporter. So, you know, to make sure you be careful.

And they say an offhand comment or a venting session can easily be misinterpreted by someone who maintains this professional obligation and may lead to an investigation by Child Protective Services.

And even getting it to the point of investigation, I agree. I mean, there's a person on a hotline or a person reading your report online that is not medical at all, has no background, and is probably scared because of everything that is happening in the world right now, especially in Florida.

And it has to even get past them before it even would get to the people who may understand it a little bit better. So these things are getting closed before they've even started. And I think... The other thing is this website, one of their sentences, hospitals are often too quick to separate children from parents suspected of medical child abuse.

Courts do that.

I know. It's just it's setting us up to fail.

Is it, Bex? It's linked to it multiple times. It's linked to this.

It is on their page of groups that they're affiliated. It comes up in multiple locations.

I mean, it's a stretch. I mean, it becomes a bit of an ethical question where we've had, you know, these these families who say, you know, we understand the risk and we still want them to taste something that they love. It becomes very difficult. But truth is the physical ability to eat a potato chip is. Um, is questionable.

I mean, I've had, I've had patients tell me things like, oh, you know, I ate a whole this in one day, or they come in and they just talk about like their favorite foods and their favorite restaurants and their favorite this. And you kind of can feel the tension in the room. Cause it's like, they've been on TPN for five years. Like how would they remember going to these, right?

I mean, like things just start to unravel a little bit that this is a kid who probably does love eating at McDonald's. But if they say that, why are they on TPN? I mean, it's, it's just, it's questionable.

Because they can't eat by mouth, then they try a tube, the tube feeds the stomach, it still doesn't work, then we can actually feed the intestines, right? With a different type of tube, that doesn't work or there's a risk to doing so. So for instance, you just had a big abdominal surgery and your gut just isn't ready yet. You use TPN.

I mean, it's a whole spectrum. So I would say it's kind of mitochondrial disease. pathology, I guess. I mean, there's a whole lot of diseases and things that are affected or start at the level of the mitochondria. So your mitochondria are in every single cell of your body. They're what creates our energy. So it's kind of the energy source of all of our cells. And the thing is that

TPN is often a bridge, meaning like to get back to some type of feed through the stomach or the intestines. Kids with... very severe conditions where they don't have enough gut to absorb all this nutrition become TPN dependent for life. The thing is TPN has risk factors.

TPN will cause liver damage over time just because our bodies aren't meant to be fed, you know, in this way and can cause liver failure actually at some point. And it's just, having a line that can get infected, that can cause sepsis, that can clot and cause blood clots. There are so many risks to it that you take it under very strong consideration.

Is there any other way to get there that does not involve TPN? And I think...

Again, those kids, the other thing is if a kid is not eating, and I think I said this on a previous episode, if I don't eat for a week because I have a really bad stomach bug and I go to eat the day after I start feeling better and I eat a big burger and French fries, I might throw up again because my stomach just is not ready to take on that much.

Sometimes after we're sick, like milk products don't sit so well, right? So the argument would be made a child that supposedly has not eaten by mouth or tube in five years, comes in and we start to feed them and they are so excited to eat that they eat the entire plate and then ask for extra snacks and there's no vomiting and there's no diarrhea. That proves to me that the child was eating.

It's not just that. They're saying they couldn't. So they didn't feed them for five years. No, they were feeding them. I mean, this child was eating because there is just no way for your system to do that.

So mitochondrial disease takes on many forms. And I think any pediatrician or metabolic specialist can tell you that there are severe forms of mitochondrial disease that are devastating. These are the ones we know the most about. There are names, MELAS, they're all kind of acronyms, but M-E-L-A-S is one syndrome. and others that are much more well studied and much more understood.

And actually, I'm trying to pull it up, but for some reason it's not logging me in. But there's a connection between that family and the Pelletier case. Because I think they're mentioned or they were possibly going to testify. I can't remember, but for some reason it's not letting me open the article. But this case came up during the Pelletier case. Yeah.

So and I think it's it's goes to this whole like they all are ending up in the same circles or on the same websites or on the same.

Correct. And I want I again, I want parents to be advocate for advocates for their children. And I want them to have information about how to be a parent of a chronically ill child. Like it is not easy. And I can tell you, I have some that should lead that group because they're amazing. You know what I mean? And they have a way of.

interacting that they absolutely come in and tell me, you know, my kid and you know that if we start feeds too fast, they're going to vomit. And why even do that? Let's go slow. You know, and I don't see it as being pushy or forcing my hand at all. It's a conversation, you know, and we're talking about knowing this child.

And those patients are usually very devastated by their symptoms. I have had some mitochondrial patients who have passed away in the first year of life. One was actually the patient that got me into pediatrics after doing a year of psych training. It was actually the patient that inspired me to go back and actually just do pediatrics was a patient with severe mitochondrial disease.

And again, as a physician who's been now in the same place for 12 years, I also know the patients. Right. So, I mean, that is interesting. they're just taking all of that away. Like those relationships that I've built with these families over time that we trust and respect each other, they're really just acting like that can't possibly exist in one of these cases.

And that does, that hurts my heart, honestly.

And it's so... It just... It sets us up to fail. It sets families who are actually coming in with, you know, good intention and true concerns to fail. It breaks the whole, you know, bond between patients and families. And it also... It negates the ones that really do. I mean, I said the family that got me.

I mean, I still remember it was actually the case that I wrote that switched me back to PEDS. I remember being in their room and a commercial came on TV about the news that night where there was a case at the hospital where we were of a child who was severely abused and that the parents had been arrested. It was this terrible case. And, you know, the parents of my patient turned and said...

why do some people get to be parents? You know what I mean? And here they are suffering through the worst days. I mean, they were losing their child and at the same time, they knew it was genetic so that they had a risk if they ever had another child of it having this condition. And they actually said to me, Does that kid need a family or need foster parents, right?

So again, these good people who are going through, and again, mitochondrial disease is in my heart because of that case. So I sometimes struggle.

with being a little offended because of what I know it can mean and again they were so appalled that there are parents that don't just love their kid and want them to not be sick and want them to know they're going to kindergarten into school and all the things they never got with their child and I think That has stuck with me.

and he passed away before he was a year old. So there is true mitochondrial disease. And I think if you look at some of the people even involved in MitoAction, some of them are researchers or do their work with these specific conditions. And I don't want to, I guess, poo-poo those anything about true mitochondrial disease because those children are devastated.

And maybe that is actually why I why I find myself so passionate, because our bond was like nothing. You know what I mean? That what we went through was life changing for me, literally. I mean, I went back to pediatrics because of it. So the fact that they're saying, you know, that I just walk in with this eye of wanting to. you know, break up these families and accuse them of things.

It's just not true. And bad doctors aside, you cannot work in a pediatric hospital every day of your life and have that be your goal. I mean, it just would not be compatible with a career.

And then there's this whole other world of mitochondrial disease that has become much more, I don't know if it's popular, much more known maybe, or people are talking about it a little bit more. And this is the concept that if you have even the slightest thing going on within your mitochondria, that of course you wouldn't have energy. Of course you would maybe have muscle weakness.

And I think if the website was saying like safety on social media, right? Like your child is in the hospital. These things are happening. Be aware, right? I mean like that site on social media and online interactions, like that's what I want them to say. But instead they start in light of the frequent use of social media used in child protection cases. Like what are we talking about?

You know what I mean? Again, it's, there is safe social media use and there is smart social media use. in all cases when you have children. You know, and it's a decision you as a parent 100% get to make. But understanding that and knowing what that can mean and reminding you that there are not good people out there.

I mean, I've had people, you know, post like their MRI results and stuff, like true patients who have conditions. And I've had patients bring in like, you know, copies of someone else's MRI, you know, because there's no name on it. And they say, oh, this is what they gave me. And it's like, no, that's not what they gave me. You know what I mean? So just be aware.

It is the same as any other thing that you're posting on social media.

Of course you wouldn't be able to get out of bed some days and things like that. And that some of the symptoms that are starting to be associated with mitochondria are maybe chronic fatigue or other things that have come up over the years that maybe we haven't been able to explain, there's now studies into whether it involves the mitochondria.

Or even Beata's blogs, right? With Maya, when she was in the coma, like she had no choice. She was absolutely sedated. That was not her smiling for a photo, her dancing in her wheelchair. That was her in a coma. Yeah.

And I think one other piece that we didn't mention, but just for those who want to go down rabbit holes, is that look at the medical advisory committee for this website, because it is Richard Bowles. It is Mark Corson from the Pelletier case. It is Frances Kendall, who is the one who diagnosed Maxine Eichner's daughter.

For those who've listened to all of our episodes, the names start coming up multiple times. And again, I read some of the backgrounds on some of the other doctors and I was floored. I mean, they sound like they have amazing backgrounds and good research, but those names coming up, it's just... It's notable. Yes. It's just worth noticing.

So where I am as a pediatric hospitalist is I've had patients with those very severe mitochondrial diseases. So I actually find myself a little bit frustrated with some of kind of all of this being lumped together because I feel it is two very different entities. And now mito, quote unquote, has become kind of this catchphrase. And

And does not have medical child abuse. Like, it's not just that they have mitochondrial disease. It's that it's not medical child abuse.

And I think it's because like that's your path. It's the same way for me with these physicians, though. I think it's because it's our world, right? I mean, yeah, you're a writer, you're a pod, you know, you have the podcast and your heart is in

I said, I want to like sit and have a beer with Kirkpatrick or with, you know, Chopra or any of these people. Like, I want to see them in the real world. Like, do they hold up this narrative?

It's difficult because the testing, some of what Andrea was talking about in the Justina case, would be extremely positive and there would be no question in those kids that have those true genetic syndromes. And now there's this whole world of kind of sequencing all your mitochondria and looking into everything.

And I think that's the hardest piece to get to even as a physician or when I'm talking to like my residents and my students is end of the day, I think this is why maybe I am so invested or that I am so willing to kind of go so deep into this is it is one of the hardest things I think as a human being, as a parent, as someone who has friends who are parents, right?

And sometimes I think ignorance is bliss in a way that when we can find so much information. So what if I found out now at my age that shall remain nameless or I have a flaw in my mitochondria? Does that... affect me? I mean, I think I've done okay, right? And maybe I'm tired sometimes and maybe I have this sometimes, but I think it's that it has become this whole world.

Who knows a child, anything that it could ever get to that point. And I mean, it's honestly, it makes for... some lost sleep over how this really plays out and how like to be a fly on the wall in their homes to see what it's really like. And that's why I think Jordan's story is so important because they can actually tell us what happened or what it was like.

Although every home is different, you know, we really want to know what it's like, especially as a pediatrician. I want to know what these kids' lives are truly like, because I think I haven't seen the tip of the iceberg.

Sounds fun. I'll be there.

And some of times, like Andrea was saying, it is not just you have mitochondrial disease. It is the most severe debilitating wheelchair bound G-tubes, ports, PICC lines. That's where I struggle because those kids that truly do have mitochondrial disease and diagnosed at a young age, went through all of that and often didn't make it. So.

Correct. The problem with mitochondria... Not the problem. I mean, thank God for them. But the thing about mitochondria is they're in every cell in our body. So it also allows for symptoms in every organ system. So I think that is another reason that maybe it does come up is that because they're everywhere... they can affect everything.

And again, those most severe cases, those kids, one of the reasons they struggle so much is because you need mitochondria for all of it. And again, I think that's why they do show up in these cases. The interesting thing is though, mitochondrial disease, like Andrea was saying, you need them from the day you are born. So

It's the ones that show up in adulthood or teenage years, not to say there aren't some specific ones that do. But it also brings into question, like, what were your mitochondria doing for those first 15 years? Because we need them our whole lives.

That's where the... differing views come. I think true classic tether cord, true classic Chiari, there is a lot of research on, although again, the randomized controlled studies are maybe a little bit lacking, but much more long-term data, studies, things to show. And a lot of the cases are asymptomatic, watch and wait, high enough risk, you may intervene preemptively to prevent symptoms.

Low risk, incidental finding, meaning you do an MRI because the kid fell and hit his head and you find a Chiari, but no symptoms, you may watch and wait. And then if imaging shows it, symptoms go along with it, concern for long-term symptoms, at that point, it becomes more of, the surgery becomes much more the standard of care.

If you look at it, most times a Chiari repair or a tethered cord repair are considered elective procedures because the decision is made that the benefit of the surgery, right, would overcome the risk of the surgery.

So even though it's technically, it's not emergent, you don't have to do it today or something bad might happen, but the idea is it is now recommended because you're having the symptoms.

I've had kids who can't swallow. They develop aspiration, dysphagia. Those are the more severe cases. And those are the ones I've seen actually diagnosed much earlier and younger. And even those are difficult because you're doing, I mean, again, guys, this is neurosurgery. I mean, I just want to put that out there. Like this is brain and spinal cord. This is everything without it.

I mean, so scary, right? Yeah. And I know that like-

But I think having that full approach is a very important piece that if they are not in the right place to have, I'm talking more in the more elective versions, but like if they're not in the right place to go through a major surgery, That could have devastating outcomes. You know, if the pain was not managed before, the question is, how will we manage the pain after?

Because there may be a period of time where pain is worse. And so patients with Ehlers-Danlos, to be fair, because of all the laxity and everything, they do live with chronic pain. A lot of them do. And so, but that changes your tolerance to pain as well. So postoperative pain is going to be different, right? than preoperative pain. I'm not saying better or worse. It may be different.

And so I think always prepping anyone going into this kind of a major surgery for what this might look like, what our plans are to manage it. And, you know, really making sure it's that whole, the whole team approach. And I'm not talking more tests, more of this. I'm talking behavioral health, maybe if it's appropriate, a pain management team, if it's appropriate.

If we prepare ahead of time, I feel like the outcomes are better after versus promising things or someone coming into it thinking this is going to change everything and change my whole life. But honestly, if you still have Ehlers-Danlos, some of your chronic pain may still be there.

Hi, Andrea. I am good. This has been a fun one. Let's just say that.

And I think being very upfront about that, that maybe we're hoping this whatever it is might work, but understand that there's still all these other things playing into it.

Yeah, that's good context.

The exclusion criteria.

So there is something called median arcuate ligament syndrome. These all have these acronyms. So it's MALS, it's M-A-L-S. The idea is in our abdominal cavity, we have a lot of things that are supposed to develop in form and be in the right place and not compress anything else.

The problem is anytime you have blood vessels, nerves, ligaments, organs, all in one place, there's a chance that one will impinge on the other and cause problems kind of in very general terms. And at times of, let's say, rapid weight gain, rapid weight loss, there are times where things may shift.

The argument is made that if you have Ehlers-Danlos, so you do have that laxity, that things may kind of shift or move maybe more than in other people. And again, it's all kind of a perfect storm, meaning some of these things, most of these things that I just mentioned, at any given point in a person's life, they may have one of these, but your body overcompensates.

And again, you may just incidentally find out that you had one of these things. Now, in this case, it's a ligament. So part of the diaphragm, which is what helps you breathe. And it compresses what is called the celiac artery that gives blood flow, I guess, to your intestinal tract.

The idea is if that band or that ligament is kind of pushing on the artery, it would decrease blood flow to your intestines and potentially cause pain or symptoms. So the idea is if you do this, what is called a celiac plexus block, you are going to block those nerves, potentially the pain goes away. So...

it can be one way to quote unquote diagnose this is if you do this block and your pain goes away, it kind of indicates that maybe that was the cause. It's kind of, if I numb that area and it feels better, maybe that is the cause. Now what's interesting to me is, a neurosurgeon doing this was, is, I mean, I've had, I know a pain management doctor who does it, GI doctors who do it.

And I know this was like a multidisciplinary team in New York, but it sounds like this was Dr. Bolognese who did it. That was just an interesting piece because to me, this is more of like a GI diagnosis. But so this was one where he did the treatment, proved it worked, and therefore kind of said she probably had it. Interestingly, there are some studies that show 25% of people

if you did scans would have this compression with no symptoms at all. So asymptomatic people. That's interesting.

We have to think about, unfortunately, in the

I was going to say something because neurosurgery is at the top and pediatrics is actually near the bottom, which is interesting. That was interesting.

It's not a fault of an OB-GYN every time there's something that happens. It's the circle of life. It's everything that goes into what a pregnancy means. And so I agree with that. I think neurosurgery, it makes sense. Like I said, this is your brain and your spinal cord. It controls everything else. So again, outcomes, it is a high risk, but a high reward

Also, when things go right because of what you may regain, but there's also what may come after. And I think thoracic surgery is another one. That's heart, major blood vessels, again, make sense, lungs, and then OB-GYN. The least are psychiatry, pediatrics. Pediatrics is interesting to me.

It makes me think, I think there's, I don't know if there's shorter stories or like there's a longer, like adults, if you think about it, they come in with a lot more comorbidities and a lot more other things that may put them at higher risk of outcomes happening versus a child who hopefully when you're coming into this has a pretty clean slate or like there's not so many other factors playing in.

But I would think the pediatric suits that are there, at least from what are much more devastating because it is a child that is potentially, harmed slash, you know, had something bad happen.

Yep. I was going to say that the word experimental, just so I think people kind of understand, it goes back to what we were saying about These ideas not being maybe validated, meaning they're newer procedures, which does happen anytime a new procedure comes out. There may not be those bigger trials to say, but that probably means that most of them are not what you would consider standard of care.

And what happens is that also means that insurers are not going to be potentially paying for these because if an insurer sees there are alternatives to treatment and this is an experimental procedure, it may not be covered. And so experimental is not always a bad thing. It's how medicine happens sometimes, meaning you have to go through a stage.

The other thing is whether you're kind of disclosing that this is something experimental when you're doing it. But I think just to be clear, like these American Association of Neurological Surgeons, all of them, there are guidelines on the things that are done the most frequently. There are places where they don't have guidelines yet, but there's still that consensus among neurosurgeons.

And then there's the experimental, and that can be for many reasons, but that it does, that word experimental does come up a couple of times, at least in these cases.

And that's important in medicine of all branches, all fields, but specifically surgical. I mean, I mean, informed consent is very established. The idea that you are disclosing the facts, you're telling them why you're doing it, you're telling them the benefits, you're telling them risks, and you're telling them the alternatives.

And to me, that piece of this is experimental should be part of that, saying the words, there may be risks we don't even yet understand.

know about right when you're talking about it if only so many have been done we want to make sure that the parent or the patient is voluntarily agreeing so that at the end when they're signing consent it's not because they feel like they have to or like their hand is being forced

that they are actually doing it because they are choosing the procedure and that they aren't, you know, there isn't some other, you know, motive of the physician or of the person signing the consent that they're doing this voluntarily, you know, without any other motive than they understand the procedure and that's what they want.

And I think in pediatrics, this still gets me a little bit in the terms of the child is not consenting, the parent is consenting, which is, yes, that's how we work in this country. That is who signs for things. But just keep in mind that the people receiving consent in some of these cases was not even the patient themselves.

It's along the terms of ketamine, where it's FDA approved in very specific situations, but not in all situations. And what it sounds like, at least from my reading, is that they were using it, what we call off-label, but they were not being informed necessarily that, yes, the FDA does approve it for certain things, but not for this specific consideration is what it sounds like.

And it's become everything they're doing. Like their whole life. This is everything. It's not one of the things they do.

And I think that's what I try to explain to people that's so hard is a niche practice where this is all they do. A doctor who did all of their research on one genetic condition, it's named after them. There's one, like that's everything. To be fair, I say this all the time that I want to keep a bit of a...

I need like a sounding board for cases of Munchausen by proxy abuse because of course I do all my research. It's everything I do. So I love that I have residents and teammates and other people that do other things and they can have their own opinions and ideas. And this idea of a multidisciplinary approach I think is so important because once you get so niche,

It's a little bit hard to see what is it, the forest for the trees or whatever that, you know, you assume if someone's there, there's already certain things that line up and then you're doing your whatever review and then doing your testing. But again, all of that can be clouded by them being there kind of in the first place, if that makes sense.

Like they walk through the door, there must be something bringing them there. And once we get into clinical diagnoses, these ones that there is not a gene test for, they're that even though there is a test like an MRI for, these ones don't meet that normal criteria, it becomes very subjective.

And that's when I get a little bit worried that whether intentional or unintentional, it is easier to see the thing that you work on every single day. It's a bias, like no matter what. And so you have to have that grounding. But if your entire center institute, everyone, this is all they ever see, and this is all they do, And then it leads to the surgery that brings in, to be fair, more money.

And then there's the follow ups. And then that's your research. You know, there's these centers that it's also they're the ones doing the research on this niche medication, niche surgical procedure. So then their results become the research that then furthers more, that then brings more to their clinic. It's this cyclical thing where nobody is outside of this. Yeah.

And of course, as a physician, I want to believe there was a point at which they saw some connection between Ehlers-Danlos and these things, and they felt like they were the ones that were maybe having worse outcomes or maybe weren't getting the care they needed. I worry about parents, patients who are just looking for answers and reasons for why do I hurt so bad every day?

Why are my headaches so bad all the time? and they find this website and it seems like the freaking like light from heaven goes on and you're like, oh my God, this is me. So you go and they offer something and it's not until you're what five, I mean, some of these people had greater than 20 surgeries done. You know, that like how many surgeries are you like, oh, what did I do?

You know, if you really still believe in this. And then there's also the flip of that where there are parents and are patients who are specifically finding these places because they know you don't have to go through the same pipeline or series of events again. to get there. And he says he reviews the medical records.

Maybe that is to make sure you've done X, Y, and Z, but that's not clearly delineated here. And we know specifically from other cases we've reviewed that it's going to the extreme. There's no timeline that makes sense. Like that, how in eight weeks a child has a GJ tube when they were a healthy baby eight weeks ago, like that timeline, there was not enough time to give things time to work.

And so I think it's and it's just the extreme, the extremity of these things is just cannot be cannot be left unsaid.

So again, because of the way some of these things are being diagnosed, the idea is we're steering a little bit off of the standard of care for diagnosis, but then follow that up with steering off the standard of care for the treatment, even if the diagnosis was something that everyone agreed upon. So the diagnosis is made...

In these cases, it seems some of the ones that came up in the lawsuits based on what's called morphometrics. And the idea is basically measurements. And to be fair, there are things like, for instance, endocrinology is the most mathematical specialty we have. It's like if the glucose is this, you increase the insulin to this. It's a very like...

If then very objective, like if a doctor really likes that stuff, endocrine seems to be like a good fit for them. And then there are parts of medicine that aren't so clear cut. So what we want to do as physicians is we want to make it make sense. We want to make it objective. And so we try to find measurements, angles, things that everyone can agree upon that

The thing is, everyone, it's how you measure it too. So it's, are you on the exact middle image of the exact MRI on the exact slice that everybody is looking at? And if you put 20 radiologists, 20 neurosurgeons in the room, would they all get the same measurement?

Because technically, you could just shift to the next picture or the next picture, and it's going to make that angle or measurement look bigger or smaller. So it's still based on how the pictures were taken, the position the patient was in, who is doing the measuring. And again, if that person is not licensed at all, it even becomes more questionable.

But there are all these different angles that they mention and lines and distances. And I think the ones that are the most studied are what I talked about before, that measurements If your spinal cord hangs lower than L2, most physicians, most neurosurgeons would say it deserves looking into to see if there is a tethering that's causing it to pull down. And then the herniation.

If the Chiari drops below 5 millimeters and you put a room full of neurosurgeons, most are going to agree that that is a Chiari malformation. Then you get into all these different ones. angle measurements for how much that area is being compressed and all of that. It sounds very mathematical.

And so there is reason to believe that people are like, great, if this gives us a measurement, that makes our lives easier because if they meet that measurement, then most would agree. The thing is, it's not there yet. those measurements are not to the point, those more, the measurements that are not reviewed as much in the studies is going to be very operator dependent, very doctor dependent.

And if you look them up, the studies that have documented them are by Thomas Millerat, Paolo Bolognese, and this Masao Nishikawa. And so if they're the ones doing the studies and they're the ones doing the measurements, And if it's a certain measurement, it means they qualify for a surgery. And then that means they do the surgery.

I'm just saying it needs to be there needs to be I keep saying this word grounding, but there needs to be an objective outlier, a person who is not benefiting from all this that is doing the measurements. Because if that person is also benefiting, I mean, I'm just going to say you're human and there's going to be some, you know, inherent bias versus it being measured by an outside entity.

In light of dozens of lawsuits.

Most of the ones they use, right.

So it's named that because of the Chiari Institute, but the idea is you correct everything in one fell swoop. So the idea is you do a Chiari decompression, which is where you remove the bone that is basically causing the pressure on the brainstem. So just because the brainstem is a little bit lower, the problem is it's trying to fit through a tiny little hole and that's where the pressure comes in.

So you relieve it. That is the procedure of choice. When someone truly has a Chiari and truly is symptomatic, you do a decompression. But the idea is they do that in association with what is called a cranial cervical fusion. You attach the skull to the spinal cord. So you fuse it together using either rods or, you know, there's all different ways to do it. But they basically join it. They fuse it.

So it's not so... It doesn't have as much mobility, which indirectly could cause symptoms. And then you do what's called an odontoid resection, which is part of your second cervical vertebrae. It sounds like they either realign it or they actually resect part of that vertebrae because the idea is it is also causing compression.

The thing is, I looked it up, the risk of any Chiari decompression is like 1% to 5%. but up to 10% can have something called a CSF leak where afterward your spinal fluid can kind of be leaking because you're opening up a space that has fluid inside of it. So like 10% could have a leak.

The fusion has a one to 4% chance of risk or of some bad outcome, but it's much higher, the higher in the spine you go, which makes sense. So the cervical spine, if you damage, I mean, anyone who knows if you injure or break something in your neck, you're from there down. If you do something in your lumbar spine, it's from there down.

So the idea is the higher the fusion, the higher the risk because it controls so much more. And then the odontoid resection is a piece that is not very well reviewed or well studied so that we don't even know the risk factors.

But so the people who are kind of naysayers of this or the neurosurgeons who kind of say something about this doesn't feel right is because you're taking multiple risky procedures, putting them into one procedure, under one anesthesia session, and then that there's really no consensus on why you got there in the first place, let alone consensus to do all of these things.

And then that there were probably, most neurosurgeons would say there were other alternatives to some of these things, meaning have those other pathways been followed? Have they tried bracing for the instability instead of going straight to a fusion? And because the diagnosis comes into question, I think it just makes each of these individual pieces more concerning.

And then when you do them all together, even more concerning.

They want to take her to this New York neurosurgeon who has multiple malpractice claims against him. That was actually – it was actually brought up during the case. That's interesting.

So Dr. Bolognese actually did his training, as Andrea said, kind of obviously he grew up in Italy and did his training there and graduated, it looks like, from medical school in 1986. And then after that, in the 90s, came out to New York. to work with a specific neurosurgeon named Thomas Millerat, which will come up a couple times during our discussion today.

He did do a neurosurgery residency and a fellowship in the management of Chiari malformation here in the United States. This does happen with foreign medical graduates or graduates of medical schools outside of the United States will decide to come over to the United States or go vice versa to other countries and do a follow-up residency fellowship to then

be able to practice in the United States or in another country. And so that's what he did. And his specialization or the thing he seemed to focus on during his training is management of something called a Chiari malformation. And when he came over and after he did all his training is when he and Dr. Millerat formed what was called the Chiari Institute.

So that is where a bulk of these cases come from that we're going to talk about today is when they were working or when he was working at the Chiari Institute. Currently, he is working at a location called the Chiari EDS Center. So this is where his story or his...

specialization in the Chiari malformation kind of takes hold or starts to kind of come to what he is now, where he is linking things like Chiari malformations, which we can talk about, tethered cord, and other neurologic issues with Ehlers-Danlos syndrome. So that he has really, he's kind of evolved into what sounds like a neurosurgeon who very much

works with patients who have both connective tissue disorders or things like Ehlers-Danlos and then potentially also these neurologic issues. And so that's why now he's the head of what is called the Chiari EDS Center. So working with both of those things in conjunction. But I think the start of our story and what we're going to focus on is more his work at the Chiari Institute with Dr. Millerat.

So a Chiari malformation is a very, I mean, it's a very well-known entity in medicine. Just to be clear, it is the idea of your cerebellum, which is your posterior brain. It helps control all of your movements. And it sits kind of right here at the back of your skull. So the idea is that it can actually slip or basically start to what we call herniate through the hole at the bottom of our skull.

So the idea is your brain stays within your skull and then comes your spinal cord. The idea of a Chiari malformation being affiliated with connective tissue disorder, Ehlers-Danlos, If you kind of think about it in your head, you can kind of come up with how that could make sense because both involve some kind of a weakness or structural weakness.

So I think the concept came from if there's ligament laxity in that area and all these other things that go along with Ehlers-Danlos, is there a chance that they'd be at higher risk of that kind of slipping happening? Or is it one of those things that... It's a correlation, but is it really a causation?

So that's kind of two of the words we use in medicine where correlation is the two seem to have some interplay with each other. And maybe you do see one a little bit more in the other. But true causation that this child has a Chiari malformation is because they have Ehlers-Danlos is where we're lacking a lot of, you know, information.

A lot of it is case studies and very small, what we call cohort studies. So very small number of patients. And what we're missing is something called a randomized controlled trial or a large randomized controlled trial. And there are things in medicine that that's difficult to do. And so a lot of it comes down to, you know, there are neurosurgeons who believe in this connection. There are

centers that very much focus on this connection but it is still very much case study based if you look up the articles that are out there the ones I could find seem to have at least one of these physicians that pops up in these cases about you know as part as one of the authors so So it does seem to be a smaller circle of neurosurgeons.

And I wanna make a point that there's something we call consensus. When we like review articles or look back at studies that are done, one of the things we talk about is standard of care or consensus. It's not always that the American Association of Neurosurgeons came out and said, this is the gold standard for this condition.

But if you asked a bunch of neurosurgeons who are practicing standard of care medicine to They would agree that this is a procedure or that this is the standard. And so it hasn't gotten to the point that maybe it's actually officially become a guideline, but it is something that is agreed upon based on knowledge, based on research, based on what is out there in the literature.

that this would be something that is there. And that's what's missing, that true like consensus or guideline on this connection. Got it.

So a tethered cord refers to at the end of our spinal cord. It's kind of weird to think about, but the little the nerves at the end of our spinal cord called the conus or that lowest point or the phylum terminology is another term that you'll hear used. It's free floating in our spinal fluid.

So like if you watch it on dynamic imaging, the little nerves at the bottom of your spinal cord are kind of floating in your spinal fluid. So the concept is a tethered cord is where those nerves, instead of being kind of allowed to free float and send off their signals, they can actually tether or attach to the side of the spinal canal itself.

So what we think of most cases is primary tethered cord, meaning a child who is born with a tethered cord. And that is usually associated with other things like spina bifida, which my cousin suffers from. So I know a lot about it just from my family. And he also had a tethered cord or tethered.

Kids who are born where that phylum is thick for some reason, meaning it's got like extra tissue or it's thickened or it's more fatty. And that obviously doesn't allow those nerves to float around as much as they want to or can. And then also something called a sinus tract where there's actually things don't close up like they're supposed to. And so there's openings where they shouldn't be.

All of that can be associated with a primary tether cord. There is something called a secondary tethered cord, meaning you get it or develop it later in life. In most cases, that is related to scarring from previous surgeries, traumas, tumor resections, anything where you actually get in that area and could cause scar tissue.

Once someone has scar tissue in a certain area, they are at risk then of later death. Symptoms or complications. And so a tethered cord causes, if you think about it, because of where it is, it's all issues kind of from your waist down. So it's numbness, shooting pains in your legs, typically bowel and bladder issues because of the location of that. You can have issues with how you walk.

And the way we diagnose it in medicine, the standard of care, gold standard, is an MRI. And it's what's called a static MRI, meaning you're just taking pictures for one moment in time. And you may see the actual tethering of the cord. If you look it up, the pictures are kind of cool, but it's actually tethered. Or you will see that that area is thickened compared to other patients.

So this, if it makes sense, talking about Ehlers-Danlos and Chiari malformation, the idea is, again... If all of your ligaments are lax and if there's issues with how your collagen forms or how all of those tissues form, in EDS, could they be at higher risk of allowing this cord to kind of be more thickened or be more tight?

Or over time, there are some neurosurgeons who say that it could kind of tether secondarily because of all the stress associated. due to this underlying disorder.

What is different, I think, about tethered cord versus Chiari is they are calling something what's called an occult tethered cord, O-C-C-U-L-T, occult, that the idea is the MRI is normal, so you don't see the tethering, you don't see the thickening. And the idea is because they're having the symptoms of a tethered cord, they can still benefit from a procedure untethering the cord. Okay.

The idea of covert video surveillance, if you do capture something, it may mean you're able to save or help the child if you have this piece of evidence. So you're not making something happen. You're doing it as another piece of your, I think, investigation. And what's most important is every state has their own laws as to how covert video surveillance can be used.

Every probably county DCF or Child Protective Services branch has their own kind of methods for using that. And then each hospital has their own set of consents that come into play in these cases. So it really without knowing very specifically this hospital, this county, this state, this HHSA or their child protective services,

that's going to be where all the litigation comes into play i think is kind of how that all does play out but as of now this is the parents do not know that the video is in the room um until much later at which point you know they realized they had been watched for 24 hours a day for seven days a week and so that does come in a lot into the court documents when it comes to

concern for invasion of privacy, violation of constitutional rights to privacy, search and seizure, all of these other things. The covert video surveillance comes up time and again.

So I think more to know about the specifics of this case, but you'll just see that this is something that has come up in previous cases and probably will continue to. So we will see how this part plays out. When she does return to Rady Children's, there is another report made to HHSA or called into the abuse hotline. At that time, we do not have access to those reports.

We know that a report was made. And there is documentation of Dr. Nienau, again, being a part of this because she is the child abuse pediatrician. So she is the one who would be helping with the medical reporting of symptoms that are occurring that are concerning, you know, for medical child abuse or munchausen by proxy or neglect or anything else that is coming up in this case.

By this point, it is stated in the court documents that Dr. Nino or somewhere in these reports that there was a potential risk of death if Madison remains in the care of her parents. We don't have all of those details, but I don't think that's said lightly in my experience or in my opinion. And Andrea, we've seen it in other cases, but there is a path of no return in some of these cases that

there may be warning signs and it may be a review of the record and it may be all of the information you have in front of you but at some point there is a concern for death is there not yes i mean we've seen a lot of cases that were escalating in that direction and unfortunately i'm researching a number of cases right now where the parent followed through on that

And the record review that Dr. Nienau or any child abuse pediatrician would do is, I just want to clarify that their specialty is child abuse pediatrics. So Dr. Nienau actually did the fellowship in child abuse pediatrics, is board certified in child abuse pediatrics.

I mean, there's other child abuse pediatricians that have a different backstory, but that is hers and has maintained, you know, continuing medical education in the field, all of that. That being said, the record review is the kind of heart of these cases, at least from that side. There are all the medical records there are.

The doctors, the parents, you know, feel have information that would be important. There's neighbors, there's friends, right? I mean, like all these cases have a lot of people, but this is one piece of the puzzle is the report from the child abuse pediatrician. So just to be clear that a child abuse pediatrician's role is in diagnosing or facilitating

finding evidence that there is no concern for abuse so their report is going to be a review of the records and what they're finding in those records that is concerning enough to potentially show signs of child abuse that report is part of the entire you know case and information that is put in front of the judge and then it's the judge making the determination based on that information whether you shelter or detain the child from the parents

makes sense right they're more trained and that's i think that's where maybe there's a little bit of dissension in in how people feel about them but again i think when you put it in that context of they are specialists in this field it doesn't mean they're going to find it and like you said it actually data shows that maybe they find it less i think that's an important just an important piece to kind of set this up before we go forward but um as with a lot of the cases we've we've followed

it is going to come into question whether this report, whether the initial call to HHSA was falsified or this idea of a false accusation or false elements of these reports. And that also, it's this word false that I think gets to me personally is, is it false or is it what they saw at that time or their, again, reasonable suspicion of whatever it is that they're calling in or reporting?

which is what we're taught to do, is that you call in when there's a reasonable suspicion. So saying these accusations or these reports are false, I think that word is just is interesting, not to say there couldn't be something that is just blatantly wrong in a report. Of course, there is. But at the same time, that word false accusation or false reporting to me could mean a variety of things.

So the report is made very early, but it goes forward to March 7th of 2019. So she was in New York in January. So now we're in March. And this is when the petition or is filed with the court for detention or for meaning like that Madison will be separated from her parents. And so at this point, the decision is made in the court to separate Madison from her parents.

And the next day there will be the hearing to kind of discuss this when the parents can arrive in court and be a part of the hearing. It is told in the court documents that the father was the one that was present at the time and that he was brought into a meeting with the team and with security is what is said in the document. And it is explained to him that the court has made this decision.

He is asked to leave the hospital. He needs to surrender his parental badge. It sounds like Dana came up to pick him up, had to surrender her parental badge. And from that moment of that meeting,

it does not sound like they saw madison again at least you know that day and along with that is the whole report that what was done by the state workers or those who work in the hhsa system and then dr ninow's report and any other collateral information from both sides is brought to the judge.

And based on what is placed before him, I mean, again, we don't know what that all entailed, but what went in front of him, the decision was made to separate Madison from her parents and to put her in the custody of the County of San Diego.

Correct, with all of the information provided to them. And I think this is a part of these stories that as a parent, as a human, you know, it sounds a certain way when you hear it, but I don't know.

And I think children's hospitals, we, I mean, this is not an irregular occurrence, but it has happened. And I think that's why we have all the teams that we do. You know, our job is with the child. That's the patient at our hospital.

And so, you know, offering all the kinds of support, being present, you know, doing, explaining to the child in child languages, kind of what, you know, what's happening as we're able to. And then also HHSA is somehow communicating with the child when they're in the hospital as well. And

like you said i don't there's no perfect way to do this i don't think there is but we also know that the time of you know separation or when this is playing out is also a high risk time for children i'm not saying you know in this case in particular but in any case you know tempers emotions fear right are all at their highest so we also have to understand that that's a time where we do have to protect the child because there is still a risk um

Okay, so the next day, so now we're on March 8th, is the hearing before the judge where the parents are present. And what we know about it from the court documents is that the parents are going to be allowed one visit per week for one hour, and it's going to be a supervised visit.

One of the things they do say in the document is that they were told they're not to talk about her medical condition, her symptoms, how she's feeling about things. And you and I both know that this is part of kind of the OPSEC guidelines for what should be done in these cases if it gets to the separation point. So do you maybe want to explain that a little bit?

i think at this point the concern and the reasonable suspicion and what was found by the judge was that there were concerns specifically of this type of abuse so again whether you whether the parents or whoever believes that or not to be true at this point that is what the court had before them and so following this pathway is what is recommended but remember that if it is in fact found that there was abuse happening

each of these times that that is kind of replaying itself can be very traumatic to that child, or even, you know, set them back if there was, say there was starting to be recovery scene that could lead to another setback.

During this time, I just want to point this out because, again, once we get into the court process, this is going to come up again because it is one of the claims that is filed as to unwarranted medical procedures that were allegedly performed on Madison while she was at Rady's and while this shelter order or this detention order was in place.

And this we are relying solely on what was said in the court documents, which is that it seems there were specifics of what the court said the hospital could do and stuff that needed to be told to the parents before it was done. And then things that maybe specifically would need consent because the parents that's important to point out.

parents are still the medical decision makers in these cases so even though they may not be allowed to be present they are still the ones who would say sign consent forms and if not then it would go to it would have to actually go to a court order so i think a lot of things comes up come up in terms of what constitutes kind of

a normal medical procedure versus what is something that constitutes needing that extra guidance or extra consent from a parent. And this kind of actually made me think a little bit, to be honest, because there are times that a parent isn't directly at bedside. And if you're kind of following along with what the plan was, a lab test could be drawn while the mom isn't there.

You know, an X-ray could be ordered and done without the parent there. And it's kind of what is that limit? A lot of things may warrant or may kind of as a physician, you feel like you should be notifying someone versus the act of consent. And I think that is an important point. And again, as we've said a couple of times, it's very state specific.

It may be in the hospital bylaws as to what procedures require consent. But I think there's some gray areas and that's one of the ones that comes up in this case is this swallow study. And just for those who are following along, I wanna explain to you what it is and maybe we'll hear from you guys what kind of what you think. But the idea is she was describing or Madison was not eating by mouth.

not very clear exactly what symptoms she was describing but the test that was ordered is what's called a swallow study and a swallow study is you go down to the radiology suite there's usually a speech therapist or an occupational therapist and you drink liquids eat foods that are tagged with a certain dye d-y-e dye so that um you can watch it go down and the idea is you want to make sure the swallow mechanism is intact that they're able to pass it from their mouth to their esophagus and then that it passes down through to the stomach

And there are pieces of this. Again, it's not just a routine abdominal x-ray, but there is no anesthesia involved, no sedation involved, side effect risk, no pain. I mean, again, if she's having pain when swallowing, sure, but then the study would end. You know, it's not necessarily you wouldn't push through significant symptoms, I don't think, at least in my experience.

But the idea is she was swallowing contrast and that there were pictures being taken. So I'd be interested, I think, to hear what people think or maybe since you're not in this field, what you think about that. But the point is, it depends really what the hospital, I think what their policy is and then what the court orders said and how those two things play into each other.

um it sounds like there was another a number of other procedures yeah yeah yeah and i mean again this kind of reading this did make me think a little bit more about about the things we do and kind of what standard of care what falls under that you know general medical consent that the parents sign at the beginning

And a lot of times in pediatrics, to be honest, parents are present or a family member is there just because of the nature of a child being in the hospital, but there are times they can't be. And so just really thinking that out, I think, especially when I'm talking to residents in the future, kind of about notifying and keeping parents in the loop.

And I think there are parents that can't be at the bedside for other reasons, you know, work, other children, life, things that they can't necessarily be there and that we're sure we're kind of giving them the same, you know, involvement in the care as if they were within reason too.

um okay so yeah so take us back take us back to the timeline okay so um this is the window of time where we really lose eyes on madison if you want to say it that way or that there's not a lot in the court documents probably because this is the parents that we're talking about now and they're filing with the courts and they weren't at the bedside right so i think there is some um some information we don't have during this time but just so we know she is

In Radies, after this shelter order goes into place in March of 2019 until February of 2020, when kind of the story picks back up. And again, there's a lot of reference back to times in there, but we don't know a lot in this time period until February 5th, 2020, when Madison is returned to the custody of her parents. There's another hearing.

It's in front of a judge called Judge Imhoff in California, in the county of San Diego. And he is now determining that Madison can be returned to the custody of the parents. But he...

There's there's some terminology and and just so everyone understands it's the terminology that's in the court document, but then the court document occasionally puts things in quotes so we are relying a little bit on what they're saying somebody said so a little bit of he said she said.

But there was a term that was used at this time that I just it really kind of stuck out to me and i'm curious to hear what you think but.

he uses the term scarlet letter of munchausen by proxy or basically that this family had been branded with their own scarlet letter of munchausen by proxy and there's times i think like we just said that legal terms opinions adjectives adverbs all these things just get kind of interesting in medicine in law where you want it to be like it's this because of this and that's just not always how it works out

But this one, I don't know. It hit me a little bit.

and i think it is interesting how how some seem like you said some seem to have a little bit more to say and you are right in the dependency court this isn't a jury this isn't it's not that same you know kind of a feeling in the courtroom where he really was kind of laying down his final thoughts on this um and then also where what is the state of the case so he says you know or at least the court documents tell us that he um you know spoke out and said um i think about

the implementation of the covert video surveillance as being an invasion of privacy he does use some of this terminology or these words at least according to the documents and if there is say a police investigation or other things are going on you know these words could be very you know inflammatory or very kind of pushing in in one direction yeah it's i mean these things are really very much ongoing a lot of the time you know and certainly many cases that we've seen

those of you who were with us on the first episode will remember. So Madison is the patient that we're talking about this time, Madison Meyer. And where we left off was she had been suffering mainly from shoulder dislocations, then admitted to the hospital in pain, began to have kind of different and changing symptoms throughout that course.

So this is almost a total of a year. So it's less a month. So 11 months, March 7th. I mean, she has been in Rady since January of 2019, but in the custody of the County of San Diego from March 2019. Now we're in February 2020. Oh, I'm thinking what February 2020 was like. See, there's more to come. Now that I think about it. It's a little wild. Yes. But I think so. That's where we are.

And this is, again, where we're filling in the blanks here and there. But she is still a patient at Rady's. February 5th, 2020, she's returned to custody of parents. So she does remain at Rady Children's. And we'll talk about it, I think, more next time about kind of what we do know about that time frame.

But this is where we kind of leave off after this is, yes, she was returned to her parents' custody, but she is still a patient at Rady Children's for whatever reason. We don't completely know. And that now the parents are back in the room, back in the...

yep and just so people understand i think the dependency court process and now the process that we're kind of talking about going forward where then there is a lawsuit by the parents against all of these defendants that's two different courts and that's two different pieces and often the dependency court process a lot of those documents are sealed for other reasons and so there the court now going forward needs to determine whether those documents come into play or not there has to be

you know, orders and motions to get all of that to happen. So we're relying on the court. When I say the court documents, I'm referring to the court process when the family brings lawsuit of the lawsuit against of the lawsuit.

And then where we left off was she was about to be taken to New York and to see a specialist or a neurosurgeon who specializes in Ehlers-Danlos Syndrome, which if you remember, she was diagnosed with hypermobile Ehlers-Danlos Syndrome. And she had now been at Kaiser San Diego, Kaiser LA, and back to Kaiser San Diego.

Yep. And so I think next time we'll we'll pick up and talk a little bit. There's there's some interesting factors that come into play with the lawsuit that the parents file and kind of how they're the counts they're bringing against the defendants. And it's a little bit different than other cases we have covered on the podcast.

And so we'll we'll get a little bit more into all of that and the court process and where we stand now next time.

And at this point, she's going to be transferred to a hospital in New York where this neurosurgeon, Dr. Paolo Bolognese, practices and where he sees patients.

And I agree. And I think what happened during other cases we've covered is that patients who truly suffer from these conditions and have symptoms

some of the you know long-term consequences and complications of these are actually getting a little bit lost in the shuffle because there are all these places and all these doctors you know that are diagnosing these things kind of in different ways and maybe using different criteria and in a way it's it's kind of what happened with covid with adhd diagnoses right where things are getting diagnosed now even on the internet by other people and the people who are truly suffering from these things at times are now facing drug shortages

inability to get care from providers because of all of this. So I think that's more, I think what Andrea was trying to say is that these conditions exist and they can be debilitating and there's concerns with it. It's just, it's more that how do we kind of find a place where everybody's getting the care they need, but the appropriate care, you know, in the appropriate places. So.

okay so madison goes to new york um to see this specialist dr boling they say so what is his he's a specialist in ellers danlos like what does he specialize in so he is a neurosurgeon by training and it sounds like over time he's kind of gotten into this niche of ehlers-danlos syndrome and his specific what he is specifically looking at is the connection between ehlers-danlos and what's called a chiari malformation which is

where part of your brain the cerebellum actually hangs a little bit lower into your spinal canal and at some point based on measurements it can start to have symptoms or things associated with it and then there's the tethered cord syndrome that he questions or thinks about in this case which is where your spinal cord is actually attached to the tissues surrounding

it in the canal and it can cause symptoms basically from your waist down. And then the other one is something called cranial cervical instability, where basically your skull and your cervical spine, there's kind of instability and that can have its own set of symptoms. So it seems like those three diagnoses that he works most specifically on and then their links to Ehlers-Danlos syndrome.

And he works with a neurologist, Dr. Kula, who I believe since has retired, according to the website. But at that time when Madison went, it was Dr. Balagnesi and Dr. Kula. And it's not extremely clear in the court documents what testing was done or how much was done when she was there. But they do give us a list of diagnoses that came out of that visit.

So to start with, they do say they agree with the Ehlers-Danlos diagnosis. The other one that we had already spoken about was the diagnosis of POTS or postural orthostatic tachycardia syndrome. And at least from the documents, it seems like a tilt table test was done in New York that did, according to them, confirm the POTS diagnosis.

And the one thing that was mentioned, which again is what Dr. Bolognese seems to specialize in, is that there were concerns she may have what's called a tethered cord. And that really seems to be the focus of his research is this connection between Ehlers-Danlos and these different other conditions.

Correct. And at this point, Kaiser Permanente San Diego has been in communication with Rady Children's. And the decision was made that based on Madison's complexity, that when she returned to San Diego, she would be admitted to Rady Children's as opposed to back to Kaiser Permanente.

As I was saying on the first episode, that that did occur even when I practiced in Southern California, where if there are specialists or if there are things that a child needs that are not available at Kaiser Permanente, they will reach out to whatever the local children's hospital is and potentially transfer patients.

So at this point, Madison is transferred back from New York to Rady Children's. And we again meet Dr. Shaylin Niinau, who is a child abuse pediatrician associated with Rady Children's. So we're now in January and Madison is back in San Diego, but now at Rady Children's. And we're going to go into a little bit of what happens now during this stay at Rady.

This is where the question of covert video surveillance comes into play. And I speculate or kind of assume that this is going to be a big part of the court process going forward because it has shown up multiple times in the complaints filed by the parents as to this timeframe during which Madison and her family were under this covert video surveillance within the room.

So when they arrived back to Rady Children's, they were placed in a room that has the capability for video surveillance.

because there was the report made prior that had been closed for, it sounds like the investigator, it was closed after an evaluation for not having enough evidence at that time to proceed.

So now that she's at Rady and they have the ability to do video surveillance in the rooms, a discussion was had, again, that depending on which side we're hearing kind of different stories, but whatever it's worth, video surveillance began in the patient's room at that time when she was placed at Rady's and carried on for, Over 30 days.

There's times where it says 36 and times where it says 38, but it was 24 hours a day, seven days a week for at least 30 days or over 30 days. Andrea and I have talked about this a little bit about using video surveillance in these cases. And maybe you can speak a little bit to your experience with video surveillance being used.

And I think it's important to say, too, that doing video surveillance is not to falsify evidence of medical child abuse or munchausen by proxy. So just placing the camera in and of itself is not forcing evidence to occur, right? The idea is you have an eye in the room, and you can see behaviors and patterns and things that may stand out. It doesn't mean you're going to find any.

It means it's a tool, like you said, to use, because it's often

varying versions of the same story right there's the medical record there's social media there's what the parents are reporting there's what the child is reporting and you may have two doctors who got two different stories as well so part of it is i think in the world we live in people want to see evidence people want to see clear concise evidence that is going to say this is what is happening and i have no doubt it's 100 and that just doesn't exist in this you know in this world but