Dr. Mary Zupanc

I'm Dr. Mary Supantz. I made a pediatric neurologist and epilepsy specialist.

Well, it was first described in 1971 by Verrett and Steele, and then Dr. Jean Ecardi and several other, Dr. Anderman, Dr. Silver, Dr. Bourgeois, began recognizing that these children were separate from children with epilepsy or children with migraine headaches. So the current estimation is that one in one million children have this disorder.

But I think that's an underrepresentation because I think children and who eventually grow up to be adults are misdiagnosed, remain unclassified. And so their families go on this diagnostic odyssey to try and figure out what's going on. And so I think that's a minimum. I think they're probably

And we know as we've begun to understand the genetics of this disorder, that there are very many variations on the theme and that the manifestations can range from mild to severe.

So onset of symptoms before 18 months of age, typically by three months of age or at birth. repeated attacks of hemiplegia, which is paralysis or weakness on one side of the body, and then accompanying other what I call paroxysmal disturbances. That means they're there sometimes and other times they aren't.

And that can be dystonic spells, which are episodes of stiffening that can involve one side of the body or the other. They can really mimic seizures. You wouldn't know that they weren't seizures unless you probably did EEG monitoring. And then what Icardi added as one of the diagnostic criteria is episodes of

bilateral hemiplegia that can either start with weakness on one side of the body and then spread to involve the other. When you have episodes of weakness on one side of the body, oftentimes you're awake, alert, the children may cry or be fretful. And then what's really interesting about this disorder is there's an immediate disappearance of all the symptoms when they go to sleep.

So our first treatment often was just get these kids to sleep. In the past, we used chloral hydrate to do that. Sometimes you can use valium-type benzodiazepines. And then when they wake up, the episodes may recur, but it takes about 10 to 20 minutes.

The parents identify what the trigger is. Oh, you can't get them excited because they're going to have an episode. Or if you put them in the bathtub, they're absolutely going to have an episode. So environmental triggers, very, very common. Some water exposure, sometimes exercise, like vigorous exercise on a playground. sunlight, flashing lights.

I haven't encountered this, but evidently certain types of foods can sometimes trigger the episodes, but every patient's a little bit different.

My first patient, the one who was near and dear to my heart, really, I followed her for years. over 25 years. At that time, this first patient, we didn't know what the heck we were dealing with. And one of my residents, who is a doctor in training, said, this has got to be a seizure. Because the episodes lasted fairly long, we just took her up to an EEG.

And as opposed to an EEG, which is an electroencephalogram, so they're electrodes glued in a specific array on the head and the scalp. And if you look at the brainwaves, if it's a seizure, you can see what we call spikes. But in her case, we didn't. We saw slowing over one particular hemisphere. You may know that the right side of the brain controls the left side of the body and vice versa.

So she, I forget which side it was. It doesn't matter. Let's say she had left-sided weakness. We saw right side.

Actually, I think parents are the most astute observers. And I always make it a point to really listen carefully to what parents are saying. Their observations are usually spot on. The way the family interprets them or the way the health care provider interprets them may be a completely different story.

Well, I think at least now people are, child neurologists in particular, are more aware of this diagnosis. But, you know, in the beginning... the provider would probably, yes, notice maybe these eye movements, maybe we should have them see an ophthalmologist, for example. Let's check out and make sure their vision's okay.

Or yeah, they're a little low in tone, but let's give this baby a little time to grow and develop. So they may downplay the symptoms in the beginning, and it takes a while to get into an ophthalmologist. Then by six months of age, these episodes of weakness are commonly misdiagnosed as as epilepsy.

And so the patient that I first had had been on probably six anti-seizure medications before she came to see me by well-meaning, well-intentioned child neurologists who none of us were familiar with this disorder at that time, but in their defense. And they had never captured an episode of on EEG. No clues there.

In the past, we would have just say, well, now we have video EEG monitoring where you can hook a child up to this EEG and monitor them for 24 to 48 hours, hopefully getting the parents to precipitate an episode. Because remember, I said each child has their own precipitating factor. That's where the diagnosis then becomes even more muddy because they'll say, well, This isn't seizures at all.

They're just showing slowing over one hemisphere. What is this? That's when a child and their family get referred to a tertiary care center.

Yeah, I think getting the history is key. My mentor, Dr. Chernow, has said that if you don't get a good history, you're like a nomad wandering in the desert. And so the history is the key.

The trick is, which of those abnormalities are clinically significant? And so I often rely on consulting with my doctor. genetic counselor and geneticist to say, let's do a deeper dive.

So oftentimes you may get exome sequencing and reveal a genetic abnormality, but then you want to know what the parents, the true biological parents, and that opens up a whole nother Pandora's box because some people think the father is so-and-so. I mean, usually you can identify the mother, but the father may not be the father.

But you have to look at sometimes the whole family and say, is this the same mutation? Is this mutation located in an area in a a gene that's going to code a protein that actually changes the function of how the cell works. And if the parent has that same mutation and is genetically normal, then it gets even more nuanced. So it's very complex.

Right. It's still a clinical diagnosis. Because you can have alternating hemiplegic childhood and not have ATP1A3 mutation. To me, that's where medicine is so important. fascinating. I mean, I've been a doctor since 1979. We're now, trust me, we're not very many women physicians and we were very, we didn't even have, we didn't have CT scans. We didn't have MRI scans.

You had to be a good listener. And if you didn't get it from the history of Your physical examination, that was unlikely to contribute as much as you'd like to think. The history is the key.

Oh, I would. I would, personally. Yes. So if it's just continuous and invariable, that would make me question. I'd want to get more details about that mystery.

Yeah, absolutely. I like the word co-opted. The other word that I've heard recently that also kind of fits is groomed, you know, that they've been groomed to this type of behavior and or co-opted into illness, appearing ill. And it may have started very young. And so, you know, this is also, this is maybe what they know in their family. This is what they do.

And it's something that they are supposed to do. It's part of surviving in the family that they need to be ill. And so, yes, you know, we definitely are concerned when we see a child producing their own illness, but we do, we want to look back. Is this a behavior that's being encouraged or not intervened? You know, so basically, yeah, we want to know, is the parent involved or not involved?

And so in a case of where the parent is co-opting the child, then that would be factitious disorder imposed on another.

Or child abuse.

Yeah, I just wanted to say, also, you can have Ehlers-Danlos and be a victim of Munchausen by proxy.

In both situations, well, and especially in conversion, it's an unconscious production of symptoms. It's not intentional. And so that's a big difference between like a somatoform disorder versus factitious disorder, where in factitious disorder, it would be intentional production of symptoms. In conversion and somatoform, it would not be a conscious.

I agree.

No, and it never will. Because it's just nuts. Yeah, I can't even imagine.

Why would they go to medical school and devote their lives to taking care of kids? And you make a good point. Those are just hot words. Surveillance, conspiracy. You know, yeah, those are headliners. So I see what you're saying here. And yes, just nuts. Just nuts.

Absolutely.

The last thing we want to do is is a find abuse. We don't want to. You know, not only do we not want the child to have gone through that. We know it's upsetting. We know people are going to be angry with us. And we know as mandated reporters, we are going to have to report. We will be liable if we don't. And also feel terrible if abuse continues and we knew about it and didn't do something.

So absolutely, if there is abuse, we will report. If there's reasonable suspicion, we are mandated reporters, we're going to do it. Do we want to? Absolutely not. Yeah. No. Yeah. Quite the opposite of this, yes.

Absolutely. As you may surmise, I was around during that since I started this in the 70s. So yes, I'm very aware of the memory wars. And this was a debate around whether child trauma memories could be recovered, like pristine memories that had been repressed from childhood up until adulthood. And sort of the pivotal case was the Ramona case.

And this was a case, I think it was 1994, in which an adult went to therapy and was having eating issues and It was suggested or asked, have you been a victim of sexual abuse or any abuse? And the patient searched their memory and didn't think they were, but then kept looking and kept wondering and kept examining, gee, have I been a victim of abuse?

So I am a clinical professor of psychiatry at Stanford, and I started in the field of child abuse actually in 1974 when the first reporting laws were out. And over the years, I became more and more specialized in the area of Munchausen by proxy child abuse. But I have, since that time, done quite a bit of forensic evaluations and therapy and writing as well, presentations.

And actually requested to go through a sodium amytol interview to try to determine, and in that interview, I guess, had said, yes, I was abused. What does the sodium amytol interview? I guess under the influence of this drug, sodium amytol, like truth serum, basically. Anyway, and then believed that she had been abused by her father.

And her father successfully sued the therapist, I don't know how many, but sued the therapist for suggesting and leading his adult daughter to believe that she had been abused. So this was sort of a pivotal case. And what came from all of this, the memory wars, basically, was some really great research into, well, can we do this? Can we actually implant memories?

And, you know, certainly what we know about memory is memory is not just a videotape of what happens in our lives. It's affected by so many things. And also this was going on in the context of, I don't know if you know about the preschools, like the McMartin preschool rights. So basically, recognizing that children, preschool children, can easily be led by inappropriate leading questions.

Yeah, I only think of them as a compilation because there was a lot of them, the Fells, the McMartin. But basically what happened is a child in a particular preschool wet his pants. The preschool worker cleaned him up, changed his pants, and went on life. And then later on, I guess, I don't know whether he was asked or just said, oh, so-and-so touched my private parts.

and then what happened from that was inappropriate interviewing you know leading the kids you know did not asking open-ended question but um you know you can tell me uh or the puppets uh what happened to you and i know something happened so definitely you know almost coursing these kids into making false statements and people went to jail for decades Wow.

Exactly. Exactly. Yeah. And of course, what came from that is a lot of good research into, you know, what is memory? And also from, you know, from psychology point of view, how best to do interviews and, you know, to not lead patients to, you know, be very careful in how we ask questions and never suggesting not using imagery to lead a patient to create a false memory. Can it be done? Absolutely.

Through suggestive questioning, through imaging, through manipulation, you can implant memories, not in everyone, and that's another interesting thing as well. But certainly some people are susceptible to implanted memories. You know, therapists are extremely cautious in how they question and the type of therapy that they do as a result of some of the research that came out of the 90s.

What's interesting to me in this case, and tell me if I'm reading this right, but I read in the complaint that Madison, the child, made this report that this was ongoing abuse from age 11 to 15 or until she was hospitalized. This isn't a repressed memory.

It sounds like this is a report that she's making, true or not, of abuse that is ongoing, not something that happened way in the past that had to be pulled out of her.

yeah yeah i mean basically therapy is a place to certainly explore your memories but the therapist is very careful not to like you know imagery or what have you to to do any sort of suggestion to kind of lead a memory forward um so so we're also talking usually if we're talking about memories we're talking about an adult looking back at, you know, early, early memories that they can't recall.

And I know when I've worked with abuse victims that wanted to know more about their abuse, I had them go back and talk to people that were there. You know, so it's not so much that we explore recovering memories in therapy. It's more, you know, if they want to know more about what happened in their childhood, going and talking to people that were also in, you know, with them.

Yeah, exactly. Exactly. So, yeah, I don't work with, you know, patients and like, let's sit and try to figure out what's happened to you. You know, the other thing is, you know, whatever your experience is, is your experience. And that's, you know, being able to try to validate anyone's memory is, you

Unless they're gonna go back and talk to someone who saw something or it was written down, like you said, in the medical record. Yeah, it's just not gonna happen.

And I just want to say I just so appreciate your podcast. It has done so much good and has really spread the word about life. you know, helping people inform themselves about this type of abuse. So thank you so much.

Yes, that's... You know, yeah. That's not what was considered a repressed memory because it's happening. It's not way in the past. It's been just buried.

You know, honestly, when I read that, I'm thinking... You know, are they just trying to find any possible way to explain any issue and blame it on the doctors?

And- You know, that was my take. That was my take. I don't think I've even heard. I haven't come across any sort of allegation of implanted memory in decades.

Yeah. Yeah.

You know, I, of course I always think back to cases that I've had and when I just see, and as you've said, we don't know all the pieces of this case. Um, so scenario number one, um, that Madison is a victim of Munchausen by proxy. Let's just take that scenario. Then of course we would want to get the medical records. We would be looking for falsification.

We would be looking for intentional false, you know, falsification on the part of the parent. So I don't know, we don't know yet. Along with that, we do see that there's some indication that Madison is either co-opted or maybe intentionally creating her own symptoms, right? So is the parent involved or not? I guess we don't know very much about that at this point.

Yeah. Because, yeah, the third scenario would be, well, third and fourth, I guess there's a number, that she was abused and that she is reporting it and she is scared to go back to her family, that what she's saying is true. Another possibility is that she's falsifying that abuse occurred in the family because either she is at this point wanting to be in the patient role

wanting to be taken care of in the hospital setting, and or things are going on in the house that she doesn't want to return to. I mean, it isn't conspiracy. But the other scenarios, I don't know. Yeah.

Can I say something about that?

Because one thing we do know about the Munchausen by proxy literature is that there is more positive outcome if there has been removal. And I do in working in my work with perpetrators as well as survivors, that being able to have a space, a safe space to be able to recognize this as abusive behavior, even including on the part of the perpetrator, has been a useful piece.

But absolutely, we always try not to remove a child. But there is some evidence that sometimes removal does help the family move forward too.

And hopefully in cases of neglect, certainly ones that I've been involved in, what happens is we provide resources instead rather than removal.

You know, and it's interesting that, you know, the Hippocratic Oath of do the least amount of harm is really what the oath is. Yeah. Yeah. It's not do no harm, but do the minimal amount of harm.

I have to tell you a story. So I had a pediatric fellow following me, shadowing me one day. And I'm asking him about what his plans are and does he plan to go into adolescent medicine? And he says, well, I really want to be a child abuse pediatrician. And I said, what? Whoa. And people had overheard him and people came rushing into the room and said, oh my gosh, you are so brave.

And, you know, I think that when people go after hospitals, you know, just thinking about how, like you were talking about the headlines here, you know, this family being abused, being surveilled, what have you, you know, let's go get that hospital. You know, these are, this isn't a hospital. These are doctors that dedicate themselves. These are, these are caring people.

people that have dedicated their lives to taking care of kids. This isn't a building.

Sure. Well, first of all, I've never been involved in a case where we did use covert video, but I like the word tool. It's a tool. And basically, when we're trying to determine the etiology of symptoms, and for example, in cases of apnea, where they're there's a possibility that the child is being smothered, then this is a tool to help us determine if that's the case.

It makes no sense. You know, sometimes we will have in the hospital, in my setting, an unsafe situation for a child to return to. And so we will keep the child longer, even beyond medical stability, that's our discharge criteria, if they don't have a safe disposition. So we will help look for a safe disposition, but we would never, Kick someone out for no.

You know, this is just such a wild case, Andrew, and, and thank you so much for helping us try to understand it. Cause I actually do feel like I understand things a little bit better after, you know, talking with you and listening to the podcast. Um, And again, just thank you for everything you do.

I actually, the pediatrician that is hopefully still going to become a child abuse pediatrician, I told him about your, you know, the podcast. So I said, listen to this because I think, you know, hopefully it will help you continue forward. I hope it does. I hope so too. I mean, thank you for helping so much.

You know, yes, a hospital room is not private. It's actually been likened to like a parking lot. You know, it could be monitored. It's a public space, you know, and I feel I do spend a lot of time in a hospital. I work in a hospital. And I feel for my kids because they're constantly, you know, they don't have a lot of downtime.

And with that said, we certainly try to provide as much privacy as we possibly can. Absolutely. But yeah, they're not private. Hospital rooms are not private settings.

Oh, you know, that's interesting to think about. I can't even imagine. because we need to be able to get in there right away. We can't have bathroom doors that lock. If someone falls or injured, what have you, we have to be able to get to the patient right away for whatever the medical issue is. So honestly, I can't even imagine it being a private setting.

Yeah, I was thinking, I was applying what you're talking about to my setting. And yeah, there's so many things we do with our population. And we don't run everything by the parent. The parent definitely trusts us that we're taking care of their kids. And we're very family friendly. We want parents there as much as possible, but they can't always be there.

And they are trusting us to take care of their child. Absolutely. If it's a particularly invasive procedure that we need to do, we would certainly do everything to get a hold of that parent. But if it's something that's necessary, we would probably go ahead.

Sure. Yeah, so basically it sounds like there was evidence on the tape that the child had been tampering with their feeding tube. Again, I have not been involved with a case of covert video capturing this, but I have had cases in which a child was presenting there was basically falsifying their own symptoms or engaging in illness behaviors.

I work with eating disorders and sometimes the children are not, you know, allowing all the feed to go in or what have you, and maybe stopping the feeding and that sort of thing because of their disorder. And, you know, and if a parent is in the room when this is happening, that's more concerning because Is this parent colluding? Is this parent promoting illness behavior?

Or is a parent just not letting us know that the child is interfering with treatment? So these are things that we've definitely seen happen with our teen population, no doubt about it.

I wouldn't call it terminal. I think it's debilitating, certainly, with the advancements in our technology and maybe our ability. You know, there are things that could happen, like gene therapy, targeted drug therapy, that could be transformative. But even with, let's say, our current status, where we're going to treat the seizures, we're

I would call it more of a lifelong condition that with appropriate and attentive care to treatment can be manageable, not curative, not by any means curative.

Oh, we try to avoid that. No, I have not. There's so many advances now in gastrointestinal motility where you can promote motility. TPN carries a whole range of complications. I mean, that's not a long-term solution. They're important. That's why we were meant to eat and digest our food is that we haven't figured out through what I call hyperalimentation, IV treatment.

fluids and liquids and lipids how to properly nourish an adult long term and so gastroenterologists work very closely if there is a gi problem to try to offer what we call enteral gi um feeds because the gut manages it much better than we do artificially through IVs.

That would be unusual, particularly if the parent, usually there are well-described precipitate triggers, particularly if they tried to precipitate one of these episodes. If there is a question of the episodes, they could have done video EEG monitoring or careful surveillance because people come in and out of a room immediately.

If it was alternating... If it was AHC. If it was AHC. Highly unlikely. Okay. It should show slowing. Most studies that have captured that... Well, if it was an epileptic seizure, you'd see the seizure. If it's an episode of hemiplegia or one side of the body is...

paralyzed, almost invariably in the contralateral, you know, if it's right-sided weakness, the left side of the brain should show slowing, and it should be pretty obvious.

I get suspicious when a child has multiple symptoms and no specific diagnosis, and those symptoms change over time, and nobody's been able to demonstrate a specific diagnosis, nor does my exam confirm any abnormalities on the exam that are consistent. You can't take just one little abnormal diagnostic test without looking at the entire clinical picture. and family.

You just can't because you will miss the forest for the trees. And some physicians get so fixated on this one little abnormality that they do. They miss the forest for the trees. You have to be kind of an artist, look back, stand back. What does this

entire picture look like as opposed to that one tree standing in the corner is it labor intensive to get all those details yes it is but that's to me that's what the art of medicine that's where you have to really dig a little bit deeper and then it becomes perfectly clear

Yeah, it's more the swallowing. It's not really the digestion with these episodes. Got it. Because the vagus nerve is in the brainstem. So there is a brain-gut interaction. So if the brainstem is affected and you're having difficulty swallowing, the vagus nerve can be affected. And that vagus nerve could slow down the heart rate, autonomic symptoms. They can slow down the heart rate.

They can slow down gut transmobility. And so, yes, you can have vomiting as well.

No, I have not. And I've rarely seen, honestly, I've seen episodes that last for a day or two, but I've not personally. I've read about it in the literature. I don't think they comment on how frequently that happens. It just says the episodes can last greater than 24 hours, up to three weeks in duration. were reported for 38% of subjects, let's say that, of patients.

32 days. I think that would be reportable, quite frankly. Yeah.

Oh, I would. I would personally. Yes. Because I'd want to make sure that, you know, these children can have what I call comorbidities. Let's make sure there's not ongoing seizures. Let's make sure that there isn't vasospasm. That means where the blood vessels are constricting. Let's make sure there's not something else going on. I would want to have that child be hospitalized.

Furthermore, for 32 days, that child would have had to have slept. And when the child wakes up for 10 to 20 minutes or longer, they should be pretty much back to normal. So if it's just continuous and invariable, that would make me question. I'd want to get more details about that mystery.

Well, that would raise a lot of red flags to me. Particularly because, let's take an example of a parent... A grandmother or grandfather would occasionally take care of that child or a daycare center or other observer. These episodes are noticeable.

They're not so subtle that nobody else would notice, particularly because I would presume the parent or care provider would say or caregiver would say, you know, Johnny has these episodes and just keep a log. Like oftentimes parents or caregivers will say, we've kept a log of these episodes and we always have our babysitter or daycare provider

or grandma or grandpa write down when the episodes occur. They're not typically subtle, particularly if they're happening frequently. And you'd want to characterize, were they alert and conscious? Could you get them to smile? Did they have difficulty breathing or heart rate? I'd be hard-pressed to wonder if that was really totally and completely true.

that's what you need to do to figure out is this something that the parent is just worried about and exaggerating because they're worried and they're afraid nobody's going to believe them you know that's plausible or is this something that is really a fabrication and and then That's where I've done my deepest dives is I'll call the daycare provider.

I'll call grandma, grandpa, babysitters, extended relatives, because all of those are caregivers for that particular child. Normally, a single parent can't. Well, particularly a single parent. I personally can't imagine having had four daughters. I can't imagine raising them without a partner.