Dr. Bex
Appearances
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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
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Case Files 17: Rady Children’s Part 1
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
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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,
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Case Files 17: Rady Children’s Part 1
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?
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Case Files 17: Rady Children’s Part 1
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
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Case Files 17: Rady Children’s Part 1
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...
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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?
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
Or is this a second symptom, third symptom, whatever you want to say of this overarching story?
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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,
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Case Files 17: Rady Children’s Part 1
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
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Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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?
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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?
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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...
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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.
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Case Files 17: Rady Children’s Part 1
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
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Case Files 17: Rady Children’s Part 1
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.
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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...
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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.
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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.
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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.
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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.
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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
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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.
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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.
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Case Files 17: Rady Children’s Part 1
So she had even more kind of restrictions or special modifications made to her school schedule.
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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.
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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.
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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.
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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
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Case Files 17: Rady Children’s Part 1
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.
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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.
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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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
Yet, despite all of it and despite two programs,
Nobody Should Believe Me
Case Files 17: Rady Children’s Part 1
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.