S5 E5: Understanding PANDAS with Dr. Sarah O'Dor
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Christopher Pittenger, MD, Ph.D | PANDAS Network
Sarah O’Dor’s website for neuropsychological evaluations: Home | Metrowest Psychology
Resources for information about PANS and PANDAS:
Peer-reviewed articles that are good references for physicians:PANS Consortium clinical guidelines:
Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric SyndromeClinical Management of Pediatric Acute-OnsetNeuropsychiatric Syndrome:Part I–Psychiatric and Behavioral Interventions
Article for primary care physicians
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PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, which is a phenomenon when a child has a spontaneous manifestation of psychiatric issues following a strep infection. It is not fully understood, as the field has only started to research and understand it over the past few decades.
Obsessive Compulsive Disorder (OCD) is a core feature of PANDAS that comes on suddenly and has a strong impact on the child’s life.
OCD intrusive thoughts are not the same as a functional worry about something in one’s life. It can be a vague fear that something is wrong and that something terrible will happen if they do not act out a compulsive behavior that is meant to ‘stop the bad thing from happening.’ It can sound like magical thinking. The behavior can turn into disruptive behavior at times when the child is so dysregulated, which can be driven by intense internal distress and fear.
With PANDAS, again, this OCD experience occurs dramatically and spontaneously following a strep infection. There has been evidence shown that identifying a strep infection and treating the infection leads to a remission of the OCD symptoms.
It can be very scary and difficult to navigate when a parent’s child exhibits such intense distress and behaviors. Not every circumstance suggests it is or could be PANDAS, as there could be multiple factors that contribute to mental health challenges.
“Abrupt” onset is not always clearcut and clearly defined. It’s also in the early stages in understanding PANDAS. It is possible that there can be subsets of kids who experience it in different ways and for different reasons.
There could be a lot of providers and specialists who are involved in understanding the PANDAS experience to get a sense of what might be causing the onset of OCD symptoms.
Regardless of having the certainty of what caused the OCD, whether it is PANDAS or not, the parents and family certainly could benefit from emotional support given how distressing and challenging it could be.
PANS is Pediatric Acute Onset Neuropsychiatric Syndrome, where there is not a known strep infection ahead of time; but there is still an abrupt onset of intense psychiatric issues like restricted eating in ARFID (Avoidant Restrictive Food Intake Disorder) or Tics Disorder (involuntary repetitive motor or vocal movements or sounds). In PANS, there may not have been a strep infection but there also could have been other infections like Lyme Disease or a mycoplasma infection. This can create an even larger gray area for diagnosing.
It may also be difficult to determine if there was an actual strep infection in the past. Sometimes the infection can lay dormant and not lead to strep symptoms, and even may come back in later years after originally having a strep infection earlier on.
Sometimes it can feel like a very ‘black and white’ disorder in terms of ‘having PANDAS’ or ‘not having PANDAS’ even though it may not have been developed as a diagnosis originally. There is no biomarker yet to identify if a person has PANDAS or not. It is important to rule out other reasons that could be treated in other ways.
It can help to get a strep swab to ensure there is actually strep to have that evidence rather than assuming strep was present.
Additionally, fear and uncertainty of what may have caused the condition can make it difficult to feel grounded and at ease. At the very least, regardless of the medical approach, providing support to control what can be controlled can feel comforting for the child and the parents. For example, if their academics are struggling, it can help to build in supports like executive function scaffolding and support to regain some control over how they are navigating situations and their learning experiences.
There are other demonstrations of neurocognitive and psychiatric symptoms that are caused by a brain infection.
The theory is that there could be an inflammatory process that is going wrong in the brain - the basal ganglia, which is involved in motor movement and OCD and tics - that can contribute to PANDAS presentations.
Habit Reversal Training (HRT) is an effective treatment for tics (motor or vocal involuntary repetitive movements or sounds). It may be delayed by suppression but it is distressing and feels like an urge to do the movement or sound, as if it’s relatively involuntary. It can look similar to an OCD compulsion, which tends to be driven by an intense fear of something ‘bad’ happening if the compulsion is not completed. OCD and tics also co-occur a lot.
There is some emerging data from Danish studies that those with a family history of autoimmune issues may have a higher likelihood of developing OCD.
Much of understanding PANDAS is in its early stages. It’s also possible to consider that PANDAS is one way of manifesting OCD, among others that we discover over time. Similar to how depression can be caused by various mechanisms.
Parents can seek to gain access to supports in schools. The extent and nature of supports may change over time given the way that the symptoms may ebb and flow. At the very least, it is important to communicate with the school and to help them understand the nature of the child’s condition.
The child may develop a negative self-esteem and sense of self if they get a lot of negative feedback for their behavioral challenges, inattention, and/or academic issues that may arise.
Children may not be able to articulate or explain what is going on inside them, so giving supportive emotional space and validation for what they are going through can be very helpful.
It can help to remind the child of who they are and the positive qualities they have outside of the diagnosis and the OCD symptoms.
Parents can externalize the OCD as something the kid is not trying to experience, but that they are rallying around the child to overcome the OCD. Parents can also get their own needs met to ensure they have the ability to provide their child what they need, as it can be very difficult for parents.
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Gerald Reid 00:12
Welcome back to season five of the ReidConnect-ED Podcast. Today, we're going to have a very interesting conversation about pediatric mental health as it relates to physiological conditions. Mental health could affect physical health, and physical health can affect mental health, as we know. More specifically, we're going to explore a rare pediatric condition known as PANDAS. PANDAS is short for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, otherwise known as PANDAS. And more recently, the term PANS has been more of a general term known as pediatric acute onset neuropsychiatric syndrome. In short, PANDAS is a phenomenon in which a child experiences spontaneous onset of symptoms that resemble obsessive compulsive disorder, tic disorder, behavioral challenges, or all of the above, and specifically, it's following a strep throat infection or scarlet fever.
So let me introduce today's guest. Dr Sarah O'dor is an instructor in psychiatry at Harvard Medical School and the director of research at the pediatric Neuropsychiatry and immunology program at Massachusetts General Hospital, otherwise known as the PANDAS clinic. Dr O’Dor’s research seeks to identify the underlying biological causes, treatments and mediating factors for recovery in childhood mental disorders. For the past seven years, her work has focused on pediatric neuropsychiatric disorders, including obsessive compulsive disorder, OCD, mood disorders and PANDAS. Her findings have resulted in several peer reviewed journal articles and book chapters about Childhood Mental disorders. Dr O’Dor’s contributions to the field of psychology and psychiatry have been recognized by organizations such as the American Psychological Foundation, the anxiety and depression Association of America and the International OCD foundation. Dr Odor is also a licensed clinical psychologist and has a private practice in the Boston suburbs specializing in psychological and neuropsychological assessments for children through young adults.
We're so happy to have Sarah O'Dor here today with us. Today, it's been a long time since we crossed paths during our postdoctoral fellowships. And what a pleasure to have you back and to hear all about everything you've learned over the years about this interesting condition that, I guess we can call it more of a phenomenon you know, that we're all trying to understand better. As you know, as you said earlier, it's kind of the early stages of trying to understand something that clearly is happening, but it seems a bit complex to truly understand and identify why it's happening and what's happening exactly, and how to help these, these poor families where the children just spontaneously seem to have very, very difficult times. So, so happy for you to join us here in the studio with my sister and I.
Sarah O'Dor 03:02
Great. Well, thank you so much for having me. I'm really glad that you're taking the time to look at what's happening with this, because you know, like you said, it is something that can be really scary to families, and it's something where we've come a long way in the research, but there's still a lot to be done, and I think the more we can get out there, the information about what is that we know, I think it will just help give both clinicians and families, hopefully, a better sense of direction and an idea of, you know what, what we're working on, but also what maybe they can work with in the meantime to be able to help their kids In the interim.
Gerald Reid 03:40
Yeah, definitely. Sarah. Just for the listener. You know, most people probably have not heard of this, and it's going to be new. And even if you have maybe heard of it, it may be, I think it'd be good for us to start by just kind of describing the phenomenon. You know, in the clinic, I'm sure you've had a lot of kids go through the clinic in terms of your research to understand, what does it look like, and what did the families report seeing in their children when they're experiencing this?
Sarah O'Dor 04:04
Yeah, absolutely. So the main symptom of PANDAS is obsessive compulsive disorder, which, in and of itself, is often something that I think parents and clinicians sometimes have difficulty recognizing, right? It's something that we hear about a lot. We might joke of, oh, I have some OCD because I'm so particular about this, but sometimes that's even the really hard point to pinpoint for families, because they don't necessarily know all the different kinds of ways that OCD can manifest. Like I've seen so many parents that say, you know, but it's not like my kid is washing their hands a lot, but that's only one type of manifestation, whereas it can look so many different kinds of ways that maybe for some parents, is that their child is suddenly asking them questions every few minutes about something that they thought they knew the answer to, right constantly reassurance seeking. It could be that they're suddenly worried to be around their sibling, like maybe they think their sibling is going to contaminate them, you know. And aside from the contamination fears, you know, there's all kinds of other fears about just any type of intrusive thought that might come to mind. Like we've had patients who suddenly didn't want to lie on their backs because they thought that they would catch some kind of disorder or some type of illness by laying on their back. So it's these intrusive thoughts that seem to come out of nowhere that don't really make sense outside the context of maybe the way a child is thinking about it, and that can be confusing, because so many kids will come up with random kinds of thoughts or intrusive thoughts, but it's when it gets to the point that it's really impairing their functioning and getting in the way of their lives, and when you might be seeing some other types of compulsatory behaviors with it, that, along with hand washing, you know, can can look very different in different kids. So that's the main thing to at first look out for, is that the OCD will come on pretty suddenly and really suddenly, have a drastic impact on the kid's life.
Gerald Reid 05:57
Yeah, that's a really good description. And I love how you said OCD could look different for different kids and for different people, right? And I was teaching my class recently the graduate school in Boston University, and we were talking about the difference between worries and anxiety and OCD. And it's a great question that one of my students asked, and you know, my response to that is, you know, as you said, OCD is more of an intrusive thought that doesn't necessarily make sense within the context of what they're worried about, right? Like somebody may be anxious about a test that's coming up because they don't feel prepared. That's kind of functional. It makes sense to feel worried about something they want to do well, in. Whereas OCD an intrusive thought could be something, as you said, like if I lie on my back, you know, the world's going to end if I lie on my back for 30 minutes or something like that. I can't do that. And it's and it's really driven by this intense, almost vague fear. It's kind of like a vague fear that they can't really understand or make sense of, but it makes them scared and distressed. So as you said, they do a compulsive behavior to kind of get rid of the fear. To say, okay, as long as I do this, everything's going to be okay, and it's not really logical. It doesn't really make sense within reality. So that's an important distinction for people to understand. It's not just kind of a functional worry, like, Oh, this is a person like me or not. It's more obsessive and intrusive, almost magical thinking.
Sarah O'Dor 07:14
Yeah, no, that's a really important point. And what a good question by your student too. Because, I mean, you know, it is something that's confusing, right? That's even somebody that's, you know, trying to learn this as a profession, much less a parent at home who's trying to distinguish why is my child suddenly acting that way. And so for parents that see this, come on suddenly. You know, there's often other things that accompany it, too. So it might be that a kid who otherwise has been potty trained for years, has started wetting the bed again. It might be that someone who has pretty legible handwriting suddenly looks like they're in kindergarten again, right? Or suddenly their clothes don't feel right. They're refusing to wear certain kinds of clothes because just their sensory sensitivities are heightened. It can even be that their sleep is disturbed, or one of the main things that we find ends up being kind of a most prevalent symptom that corresponds with the OCD is rage and mood lability, where, you know, suddenly the kid just can get so irritable so quickly, and the extent to which they become upset is outside of what the child would usually do, right? Something is setting them off, so that now they're being physically violent towards parents and siblings, or things like that might even happen at school, causing other types of school difficulties, which, you know, we can get into later too, because that's a big component of it as well.
Gerald Reid 08:33
And again, it's not voluntary behavioral issues, right? It's kind of like, I mean, you can speak more about this, but more driven from the internal distress that's so overwhelming and dysregulating.
Sarah O'Dor 08:44
Yeah, yeah. No, that could be the case. And what's so tricky is, you know, when you're not familiar with these kinds of things, is, most people aren't, you know, you can look for things in the environment and say, Okay, maybe it was because, like, their dad's been away on a trip for a week, right? There's things in the environment where sometimes we can rationalize this for a little bit. So sometimes it's hard to catch right away that this is what's happening. But I guess the thing to think of here, especially with PANDAS, is, did your child recently had a strep infection, or did someone in the family recently have a strep infection? Because there's certainly kids who have strep who don't actually show symptoms of strep, but if this is coming on suddenly, there's been sickness in your household, or your child is sick. You know, it's reasonable to give your pediatrician a call and say, you know, can you give them a throat swab? Right? Can we just check and see if this is happening? Because then that's a really important data point to understand. Okay, this might be PANDAS, right? It might be something that was related to this strep infection that this kid just had, or something in their system that is related to kind of these sudden changes that are occurring.
Alexis Reid 09:50
Yeah, I think this is so important, and I'm so glad we're having this conversation. I have the very rare opportunity to kind of like zoom out. I like being able to work at the periphery as like the learning expert, but also take into consideration all these different aspects of what might be happening for the people I work with, and I just contributed to an article that was just published in the Journal of Developmental and Behavioral Pediatrics with colleagues, Dr Jason Fogler and a bunch of other folks, where we talk about just paying attention to some of the symptomology that could potentially be misdiagnosed or misunderstood. In particular, in this article, we talk about epilepsy and how it sometimes can get misdiagnosed as ADHD, when kids kind of have this like spaciness, when they are showing up for school in different situations where it might actually be a disorder that they need to treat differently. And for PANDAS similarly, in the cases that I've worked with of children who have experienced pandas, you know, a lot of times there's a lot of assumptions about what's happening for them. And on the other end of the spectrum, I also want to just mention for the listeners, because there's so much information that's out there. And sometimes parents or individuals will say, ‘Oh, I do that. That's me, that I must have this.’ So I want us to just caution when we're listening and having this discussion that because one thing that we discuss might make sense and resonate for you. It doesn't necessarily mean you have PANDAS, but it does mean it's something to investigate, something to ask questions about and be curious about if you see some of these co-occurring behaviors or manifestations of different things. So the rage and the and the other behavioral aspects that you mentioned, this is often, I want to reiterate what you said because of or after a strep infection, or exposure to a strep infection where we see this kind of onset come on rapidly.
But I just want us to just take that into consideration, because I know a lot of times, I'm sure in your practices, too, people come in and they have a list of things that they think they have or they're experiencing, which is great to be doing the research. But also, like, keep in mind that maybe this doesn't all apply, but it's a conversation to have. And I think from the bigger, broader perspective, there are so many different aspects of what's happening for us, biologically, neurologically, behaviorally, that can be contributing to how we show up and present every day, and especially for young kids, and like you said, for parents who maybe don't understand what is happening in a moment could be really scary. Could be really frightening. I mean, and for us as practitioners and you both in the mental health field, there's not enough information that goes into training for psychologists and psychiatrists sometimes about PANDAS. So I'm so glad we're having this conversation. I don't really have a question around that, but I kind of want to just preface the rest of the rest of the discussion and thinking about, you know, sometimes we need to zoom out and look at the bigger picture. And I think this is something to consider when we are working with and noticing different behavioral changes that come up for children and adolescents especially.
Sarah O'Dor 12:53
Yeah, I'm really glad that you brought up that point, because, right, a lot of the things that I've mentioned as symptoms are things that you're gonna see in your kids sometimes anyway, right? I mean, that's the thing is, and they can also be related to so many different things, right? If your child is suddenly wetting the bed, right, you should also call the pediatrician, because there might be something else that needs treatment, right? And so, you know, hopefully with this conversation, people can have a better understanding of what we're starting to realize might be connected in some of these areas for a subset of kids, right as a subset of those kids who have OCD might have OCD that's related to this type of pathophysiology that we're uncovering. So I agree. I don't want everybody to listen and say, Oh, my kid is doing a couple of those things. So we should go check it out. It really is when you're noticing that this is an abrupt onset. I mean, for some kids, it happens overnight, right? But, you know, abrupt is not defined, right? So for some kids, it might not happen that quickly, which is one of the things that the field is studying, is there a difference between those kids? Maybe that's reflecting a different type of pathophysiology, whether it's overnight versus a week later, you know, versus a couple months later. But it really is this idea where suddenly your child is being so impacted by these symptoms, and that it's this constellation of symptoms that it's worth looping in the mental health professionals.
I think you make a good point too, of part of this is stepping back, because I think sometimes we can get so siloed in our own specialty, right? But this particular disorder is one of those that really highlights that our bodies are complex, right? And so it takes a team approach to understand what's happening where, you know, a lot of the teams that treat these kids end up being rheumatologists, immunologists, social workers, you know, school personnel, nurses, helping out with what's going on at school, psychologists, psychiatrists, the pediatrician. I mean, it's really a team effort, because it crosses so many specialty areas, again, both in treatment, but then and also trying to figure out what is happening, what is causing this? And so you know, the research is cutting across different areas too, which is exciting and also creates its own complexities too.
Gerald Reid 15:08
Yeah. And as you said earlier, Sarah, you know, it takes time to do all the research to really understand it. And at the same time, there's these families and parents who are just so distraught seeing this happen and feeling helpless in some ways, and so, you know, it just makes me think that even if there's ambiguity about how to help or or what's causing it, at the very least, I think it's probably important to have some sort of counseling, therapy, mental health support team to just give support around coping with it, at the very least, because, you know, when there's that uncertainty, ambiguity and maybe even dismissiveness about what's happening, because maybe providers don't know how to help or what to say exactly; at the, you know, at the very least, you know, you know, providing support, emotional support, is going to be pretty crucial for the parents who are really on the front lines of it.
Sarah O'Dor 15:58
Mm, hmm. Yeah. I'm glad that you brought that up too, because I think even at the Stanford clinic out in California, there's a PTSD group for parents, right, who have had kids that have had to deal with this, and those are parents of kids who have gotten treatment. But you know, part of this is that, you know, it's very scary to watch your kid go through something like this, and there's so much we don't know, and there's so much that people don't know even about what it is that we already know that oftentimes the kids that we see have been to see several different types of providers, right? And there's, there are obviously complex cases anyhow, but the parents have had to be their advocate. Go to different kinds of places to say, what's going on, how do you help my child? And I mean, the tricky thing is, is that they, you know, for very good reasons, they've made the criteria for PANDAS, while broad and better, very heterogeneous, it also doesn't include all kids that are potentially dealing with these kinds of issues. So we haven't talked about it yet, but there's also pediatric acute onset neuropsychiatric syndrome (PANS), and this is a little bit different in that there's not a known strep infection ahead of time, right? But you still get these same symptoms where it's the abrupt onset of all the things that we talked about already, along with restricted eating, ARFID, Avoidant restrictive food intake disorder is also one of the main criteria for PANS. And then there's also ticks that we haven't talked about too. So there, there are a whole kind of slew of things that kids could present with, but with pans, they don't necessarily need to have had an infection ahead of time, or the infection might have been something like Lyme or a microplasm infection. So then it's this even larger gray area of potentially infection mediated psychiatric and other types of physiological symptoms, and it can be a lot to sort through than trying to find help for your children.
Gerald Reid 17:55
And infections can just kind of lay dormant in your body, or just hide in the body in some ways too, which can make it even more complicated, as far as I understand.
Sarah O'Dor 18:02
Yes, yeah. So I think there's probably a number of kids that we've seen that it could have potentially been that this was started by a strep infection years ago, and, you know, then they recovered from it. But something has been thrown off about their immune system, such that the next time they get sick, their body has that kind of crazy immune response to it again. Because that's a lot of what we see is there ends up being this cycle where, you know, I mean, it has a relapse and remitting course, where if a kid gets sick, you see these symptoms when you treat the infection, a lot of the symptoms get better in many kids, and they get sick again, and it happens again. And it's kind of this, this back and forth, which can add to the challenge. For families when you think, Okay, this is better, and then it comes back again. Or for families who years later say, oh, wait a minute, I feel like back when they had strep, when they were five, they were acting kind of weird. Is this PANDAS? And you know, it's really hard to tell at that point of what's been what's been going on, but to your earlier point, just in terms of the, you know, the families trying to wade through this and get help for this, because it's kind of strict criteria, right? The criteria was really made to get researchers on the same page, to say - Hey, we are getting a sense that these things are tied together. Let's take the kids that we've seen, see what's going on with them, and make these clinical criteria based on, you know, what we've experienced so far, so that we can all research the same thing, right? And it's tricky, because now that's become sometimes a very black and white disorder, right? Do I have PANDAS? Do I not have PANDAS? Right? And that wasn't the way it was initially conceptualized anyhow. So sometimes people can be very tied to the diagnosis, but really it's a diagnosis that just helps to capture all of these pieces together to guide what we think about it. Right? And the problem with that is that, like, there's no biomarker yet to be able to say, yes, you have it. No, you don't have it. It's more like, all right, all these things are happening. Let's go see a medical professional to make sure that we can rule out other types of potentially really scary things that can cause, you know, those kinds of issues. And if we can't rule it out and treat it with those ways, let's look at what the literature is saying that these constellation of symptoms can be helped with, and the good news is we have found some evidence that it can be very helpful for these specific kids. But then again, there's there's all kinds of kids that we see who don't quite fit this, who are also struggling, and are kind of on the periphery of this, and that's where it gets really tricky to know, what do we do with them, how do we treat them? And we just don't understand that yet. And it can be really hard when you're a parent and you have one of those periphery kids of saying, it doesn't really fit into anything yet, what do we do? And so, you know, there's, there's a lot of work to be done.
Alexis Reid 21:01
I think it's so interesting. And as you both know, I kind of become a catch all for a lot of people who are going through a lot of experiences because executive function attention, being able to understand how you learn, a missed a challenge that we can't really understand. And there's like, a misalignment, right? Your homeostasis kind of is off, because biologically, things are shifting and changing that we don't understand, which could feel traumatic for the individual who's going through it, child, adolescent, adult, whoever's experienced any of these symptoms. And you know, thinking about from a treatment perspective, I'm going to just kind of put this plug in there, because I've worked with a lot of people who have had pandas before in the practice I worked with previously, and, you know, one of the things that we can actually zoom in to pay attention to is really building these executive function skills and building building some confidence in helping to, you know, frame a situation and say, Well, what do we have some control over? How do we break it down to like, a really small step that we can start with, whether it's from a learning perspective or just kind of navigating through your day thinking about that emotional regulation side of things, as you both know, is really an important thing to begin with. And I didn't want to jump into like, what do we do to treat but I had to just jump off and say, you know, when in doubt in a lot of these situations, we can go to the emotional regulation and the executive function pieces and think about, how can we help individuals regain some control over how they're navigating through different situations? Because sometimes it feels like so many other aspects of their worlds are out of control when we're just not sure which can amplify anxiety. And then, of course, impact your executive function skills and your ability to do things. So I think at the very least, there are some things, and I'm looking forward to hearing more from your perspective and your work too, and how we can kind of jump in and support the individual. And then, of course, the systems around them.
Gerald Reid 23:02
You know, real quick. It reminds me of working with someone who had a concussion, you know, and seeing how scary it is when things don't get better for a certain period of time, and takes a long time, like months, to truly feel back to themselves that like their brain is working again. And Alexis you had mentioned too, you know, the kids that you have seen with pandas, like they almost feel like their brains not working the way it used to. And so I think what you're suggesting is, you know, regardless of the therapeutic treatment, what are ways to kind of scaffold support around the child to feel like they can still persist and live and function despite these challenges? And I think that's kind of the frame that you're saying, and it's a good it's a good frame, right? Especially when there's so much uncertainty. How can you help someone feel safe to whatever degree they can? Because when you're recovering from something like that and you don't know if it's going to get better, it's scary, right? And that fear can make everything worse in addition.
Sarah O'Dor 23:53
Mm, hmm, yeah, no, that's a good point, because I think I mean that. I think the child is scared. I think the parents are scared, especially, you know, when there's not a clear answer of, kind of, what to do. And so, you know, I'm happy to talk through those pieces too, of kind of, you know what? What are the steps that you might take when you see that this might be happening with your kid? Because I, I like what you bring up too, in the sense of it, it really is thinking about many aspects of the child, not just, oh, there's something that might be medically happening, because some people really focus in on that part, and I think, I think they're missing out on opportunities, on supporting the kids in so many other important ways, while the medical piece is trying to get worked out. Because sometimes that can take a really long time.
Alexis Reid 24:38
And I find this is so true. I love that you brought up like, this is a label that helps us to understand what's happening. And I think a lot of times when individuals are going through these experiences, they kind of lean on the label instead of think about like, what's possible here in this moment, both are important. Yeah. Both are important. Exactly, yeah.
Sarah O'Dor 24:55
I've heard people say, you know, I went to a provider, and they didn't believe in PANDAS. And then someone in the PANS consortium, I think, very nicely said, well, PANS and PANDAS are not religions, right? You don't believe or not believe in them, right? And I liked the way they because it really is. It's not about that, right? It's a framework to help us understand, okay, there are different things that might be going on for this child. What does that open up in the sense of toolboxes that we might be able to use to help them? And so, right? I don't want people to necessarily get stuck on the label, but to think more broadly of we're learning so much about psychiatric manifestations of what's you know, especially in kids, you know, for some of them, we're starting to understand maybe why that's happening, and that's an okay thing to start to think about and look into, because, again, it just gives us more opportunities to eventually find ways to treat it and help kids. And I don't, I don't think that's a bad thing to explore or be open to.
Gerald Reid 25:57
Yeah, Sarah, can you maybe explain a little bit about the theory behind, you know, why they think it's happening like, you know, how an infection could potentially contribute to this manifestation rapidly?
Sarah O'Dor 26:07
Yeah, that's a great question. So if we look at other types of things that even have just been discovered in the past 20 years, in terms of how psychiatric manifestations can come from infections, you know, there's things like now NMDA receptor encephalitis, where you see individuals that look psychotic, right? But it's related to an infection and inflammation, and even lately, with covid, right, where we've seen, you know that even though this doesn't happen for the majority of us, a subset of people who get covid, end up with brain fog, and they have these other types of neurocognitive symptoms that really impact their lives. And so we're starting to understand more this relationship between infection and psychiatric symptoms in a in a subset of people. And so where PANDAS really started with, with Sydenham Chorea. If you haven't heard of it, look it up, because it's really interesting to see. It's not something that we see very much in the US at this point. But there are these kids that, after they got a strep infection, they would have these like, a motor dysfunction, right? And so you can see these video of these kids, you know, acting in very strange ways, in terms of like, their motor control is off. And what they noticed is those kids also often had OCD. And so when they started looking at these kids that didn't necessarily meet criteria for Sydenham Chorea with the motor piece, they saw, they often, you know, might have OCD or tics along with these other symptoms. And so what they think might be happening is the basal ganglia, an area of the brain that has already been implicated in tics and OCD, they think that there's some type of inflammatory processes that are kind of going wrong in those sections of the brain, because the basal ganglia is connected to so many other parts of the brain, right so it affects executive functioning, and it affects motor control and balance, you know, emotion regulation, along with things like, you know, OCD and tics. And so the theory is that there is potentially some inflammation or something going on in that area. And now we're starting to have some good research to support that hypothesis, where they've been able to take the blood serum from kids that have pandas and put them in kind of, you know, mouse models of areas of the basal ganglia, and they can watch the immune cells and see what they do, and they don't act the way that it would for kids that don't have pandas, right? The way that they're binding to these other cells and the way that the inflammatory processes are working are different. But then what's interesting is, you treat those kids with IVIG, which we haven't talked about. It's one of the, you know, treatments for kids that have this more severe conversion of this - what is it called, again - IVIG intravenous immunoglobulin treatment. So it's an IV treatment, so it's a, you know, pretty intensive treatment. But after they treated kids with that and saw their OCD get better, they took serum from those kids, put it back in those mouse models, and it was not showing the same kind of differential inflammatory processes.
Alexis Reid 29:10
It's incredible. Wow.
Sarah O'Dor 29:12
And the thing is, that wasn't true for all the kids in the panda sample, right? But what it suggests is that, okay, for some of these kids, we're starting to understand a little bit about what the pathophysiology is, and that's Chris Pittenger's work at Yale, and he's doing, you know, phenomenal things, but we're starting to understand for the subset of kids what might be happening. And I think, I think there's probably a number of different things happening, right? Not all of these kids are having the same processes happen, but we're getting some evidence that, yeah, there are some processes that are involving the brain, which then gives us insight into okay, what else can we add to our toolbox that would help to address these kinds of issues?
Gerald Reid 29:45
And Sarah, you know, it it's not so far away from how we think about psychological treatments for mental health in terms of like, at this point, they've done so much research on therapy for mental health conditions like CBT, Cognitive behavioral therapy for depression, right? And the research is pretty clear it doesn't work for everybody. So the question as a field is, what treatment and for whom will this work and why? Right? And so really, we are trying to understand the individual and how treatment maybe not one treatment may be an integration of different treatments, or a specific treatment for a specific person within the individual differences that they bring to the table. And so it's not so far-fetched to consider that this could be the case, right? It's just a different version of individualizing, you know, a treatment to understand the pathology, right? And we're trying to do that in our field, too. And to me that this intuitively does make sense. And like you said, we just need more research to kind of flesh that out.
Sarah O'Dor 30:44
Mhm. I think for too long, there's been a separation between psychiatric care and medical care that I think we are moving to that point, whereas we're talking about, right? Where is depression coming from? Why aren't the treatments working for everybody? Right? It's a direction we're all moving. And I think, I think the framework of pandas, given that it's so multidisciplinary, helps to push this issue of crossing some of those boundaries, to say, hey, these things, you know, if you see a kid with OCD, you might not be just psychiatric. I have that in quotes, you know, it there's, there is so much mind body connection, and we're learning so much about how these things are related that it's, you know, it requires the fields to talk to one another and figure out what might be happening, where this is coming from, just better informed treatments, and to, again, like you're getting to, you know, the targeted treatments. How do we identify what is happening for this person, why it's happening, and what are the right treatments for that? And that's really why I began studying this. Right? You get so many questions from parents saying, Why is this happening to my child? What can I do about how do I get them back to their usual selves? And it was really exciting for me to learn about pandas and be like, Wow, I start to have a little bit of an answer, right? In terms of, yes, there are some things we're starting to figure out in terms of why this is happening and maybe what we can do about it. And I am hopeful that, you know, this is kind of an opening to be able to to think about that more broadly, and the other types of, you know, psychiatric conditions that we're trying to figure out as well. But it's going to take reaching across, you know, different disciplines to collaborate and think of psychiatric conditions more broadly and what might be happening in the body.
Alexis Reid 32:27
I think that's such an important takeaway from our episode today, even though we're not finished. But just thinking about how we need to zoom out a little bit more. I mean, I think we're moving in a direction where a lot of folks just kind of want, like a pill, a treatment, a thing to do, to make whatever feels uncomfortable go away. And I think it's so important to go back to that point of kind of looking multi multidisciplinary at what's happening, especially if we don't fully understand it, and taking in that information and the observations. I mentioned that article that that was just published, and we looked at it from a neurodevelopmental perspective. We had neuropsychologist, we had a clinical psychologist, we had a neurologist, and then we had me as an educator, kind of looking at the situation to say, when we collect all this information, what are we seeing? What is actually happening? And then what do we do next? [You're talking about the child with epilepsy.] It's thinking and looking at ADHD and epilepsy as like, potentially co occurring, or potentially one or the other, and really just prompting the field, both medical and mental health, to kind of look at the bigger picture and say, Well, what do we do with this? Because, you know, you brought up covid before, there was a brief mention of Lyme disease. And our mom had Lyme disease, and she didn't have the typical Bullseye when she first started feeling the symptomology that was related to this autoimmune and neurological disorder that she ended up having from the Lyme infection. And there were so many people that just didn't really understand and she didn't understand it. She was used to joke. She's like, well, I have three cappuccinos a day. I'm just getting old. I'm tired. Versus like, Oh, my body is actually being drained because it's fighting this infection that she didn't even know about. And back then, we didn't have any information about it. She and I went on a deep dive to try to do as much research as we could to learn about this thing that a lot of doctors were saying didn't exist. And even as far back as you know, like five or six years ago, when I worked with my first pandas case, a lot of the team and doctors that the parents had said they worked with, they didn't really know what pandas was. They didn't know what to do. So I kind of want us to just keep going down that path of, okay, well, we can see the symptoms, we can think about how we can treat the symptoms, and then what are some questions that parents and families could potentially ask the service providers that they're working with to try to, like, you know, delineate what might be happening and what they have some control.
Sarah O'Dor 35:01
Yeah, that's a, that's a really good question. I mean, I think one of the one of the first things, if you're thinking that it might be pandas or that strep was involved, is that, you know, treating the strep is a very important component of it, right? That that's why, usually the first person to contact is the pediatrician, to see if there's strep happening and to get a swab. I mean, there's so many kids that we've ended up seeing where they're, like, we went to the pediatrician, they said it's probably strep. So will it treat you for it? You know, really try and get that swab, because, like I said earlier, it's an important data point. Then people can work off of but then I think, you know, there's also other types of workups that pediatricians can do. And if they're not sure about, you know, I can help direct to certain references to give them an idea of what to do. But, you know, there are other things to potentially rule out to make sure that there's not something else you know, that the child hasn't developed an autoimmune condition that needs certain type of help, like arthritis, right? Yep, yep. [Like arthritis], and, you know, or really scary things like autoimmune encephalitis, you know, and I'm saying that's very rare, so I'm not saying that's potentially an issue, but this way, I think it is important to, you know, talk to a medical professional, or even if you're a psychologist, seeing a patient that is, you know, sounds like this type of situation. You know, collaborate with a medical professional, just to rule out some of these other pieces [like Lyme disease], yeah, yeah, yeah. And because, right, Lyme disease, you know, can, can cause a lot of difficult problems in people. And so, you know, we have, I just recently published an article that was intended for primary care physicians that helped to kind of walk through this little bit. And then the pans consortium also has some guidelines in terms of kind of workups as well. And so I'm happy to, you know, pass those along, and maybe you can direct them from your website too. [Yeah, open in the show notes], perfect. Yeah. Because I think that, you know, it helps to sometimes give the pediatricians an idea of, you know, what to look for if they're not familiar with this, as some of the rule-outs. So maybe kind of asking those questions of saying, what do they know? Are they willing to potentially rule out some other things, and, you know, potentially collaborate with other medical professionals?
I do have to give the caveat, though, that there's some, sometimes it's tricky to see if there has been an infection in the past, right? Right now, I'm talking about a kid that you think might have strep then, right? There are plenty of people where, you know, if we went and got a blood test to see if we had elevated strep titers, you know, it might come up, as we did, because we've had strep in the past, and it might be totally unrelated to what's happening, or it might be that we had Lyme at some point a long time ago, and it's just been there, but it's not doing anything. It's not related. So I would just caution a little bit right in terms of, like, the panels that I'm talking about, is to see if there's something acute happening now; if it's something in the past, it can be really hard. And some physicians will encourage you to kind of look down that path, and sometimes that might be helpful, and sometimes it doesn't give you the kind of information that you're looking for. So just kind of a word of caution about that.
But then I think it's important to ask questions too about what are the other ways that you can be supporting the child in the meantime, right? So if you have the medical team working on you know what might be happening medically? You know, are you treating the strep infection? The medical team can also help with treating kind of the dysfunctional immunological response that you might be having. So, you know, sometimes just over the counter anti-inflammatory medications like NSAIDs will end up being prescribed. Sometimes those can be really helpful, or sometimes more, kind of more serious, or kind of, you know, with more side effects, potentially, treatments like IVIG might be looked into. But you know, as we were kind of saying earlier things like CBT and sometimes, you know, other types of medications that you might prescribe for OCD or tics can be beneficial. If the kid has tics, Habit Reversal training can be really helpful.
Alexis Reid 39:05
Can I actually have you guys define tics a little bit for audience, because they might not know exactly what it is?
Sarah O'Dor 39:11
Sure, yes, and especially because we've been mentioning Lyme disease, I'm not talking about the bug. Yeah. [Good distinction.] Tics can be either motor tics or vocal tics, but it will be repetitive movements or sounds that the child or an adult has.
Gerald Reid 39:31
Involuntarily and involuntarily
Sarah O'Dor 39:36
Yes, because when you say involuntarily, sometimes people say, Well, if their friends are over, I don't see them do it. They might like sneak in the kitchen, and then I see them shoulder shrugging their shoulders over and over. So it can sometimes be confusing, because there's sometimes that there's enough control where, if someone senses the urge, they can control it a little bit to delay it. But it might I often hear from parents that if a kid is trying to control a tic at school. So again, tick might be, you know, that they. To kind of blurt out certain phrases, blinking, yep, an urge. Sometimes they're more complex where they might be, you know, moving several parts of their arm together with a head tilt. You know, where it might be more complex that a kid might not report doing at school. But then as soon as they get home, that's just nonstop, that they keep doing it over and over, right, that they contain it a little bit. But really it is this urge that, you know, they can kind of control, but not completely.
Gerald Reid 40:25
Think of like having, like, a really, like, strong itch on your back. You don't think about itching it, you just immediately itch it.
Sarah O'Dor 40:33
Mhm. And that that would happen over and over again, right? And it's not uncommon that kids have tics that kind of come and go. But there's sometimes that tics can really be uncomfortable, right, where people can get bad neck pain, right? Or it can affect kind of their eating, if there's certain things that they're kind of doing with their mouth, or it can draw them attention from kids in class, and they don't like that kind of attention. So yeah, I'm glad that you let's pause and define it. And it can look many different ways, and sometimes it can get really confusing to differentiate a tic and an OCD compulsion. So compulsions for OCD are the things that someone feels like they're driven to do to avoid it, and they feel like they have to do, yeah, or sometimes in younger kids, they might not even know it's related to something else, they just feel like they have to do. They have to do it right, even though they don't know what the consequence might be. And so sometimes it's hard to differentiate OCD and tics, but they also co occur a lot. Okay? I mean, you know, we think they're related to very similar circuitries. So you know, some you don't necessarily know, I know exactly what it is, but you know, if you see those. You can seek out either a neurologist or a psychologist or a psychiatrist that can help you to understand what's happening and then help provide treatment for your kid, which, like I said, could look like Habit Reversal training or sometimes medications.
Gerald Reid 41:53
Yeah, definitely, I've seen Habit Reversal training be helpful. Sarah, I have a conceptual question, and so in terms of pandas, right, having a strep infection, contributing to inflammation in the brain, you said the basal ganglia probably implicated, and then manifesting these OCD symptoms. Is there a distinction between kids who have a history, a family history, of OCD thinking that could have a kind of genetic component or kind of modeling, whatever the component could be that comes from the family, versus kids who didn't have that family history, and then the strep just spontaneously brings up something that you wouldn't expect this kid to have in the first place, or not be susceptible or predisposed to. The only metaphor I can think of is kids using social media, like if you don't have anxiety and you're using social media, you might develop anxiety just because of the way that social media activates your brain and messes with your brain. If you have anxiety and you start using social media, it's probably going to make this anxiety worse or make it flare up even worse, even if you're predisposed to it's going to activate it because of the nature of social media and really messing with our brain. So that's the best metaphor I can use. I'm wondering if the way I'm thinking about it is accurate in terms of how we theorize why the strep kind of how it manifests these OCD symptoms.
Sarah O'Dor 43:09
And I, I am thinking about it the same way that you are. And I wish, I wish I had the answer to that, but there is some really interesting research coming out that helps to kind of get at that. Because, you know, we do wonder, are these kids that would get OCD anyway, right? Is this just the thing that triggered it and so it started at this point, right? Or are these kids that otherwise wouldn't? And what we see are, you know, there's decently high rates of OCD in the families, and there's also decently high rates of autoimmune conditions. So we're starting to do more of kind of the family studies to get a sense of, you know, what are the other rates of things that are happening, and is this kid already predisposed to having an immune response that goes awry? And is this kids already exposed to have, you know, or develop OCD or related conditions, or tics or related conditions? Because, certainly we see that, you know, there's, there's pretty good family histories in that as well.
And in Europe, where they can do these amazing population based studies, right? That's where some of the research is coming from, too, in terms of being able to look at families and say, Okay, what is the incidence? If we see, you know, what's happening in this family in terms of rates of autoimmune conditions and rates of OCD, and they are starting to find that there is a higher risk of OCD for people who have infections. So like relatives of people who have had severe infections also have higher rates of OCD. Yeah, that there are some results from like the Danish health study that are showing that there potentially are relationships between familial history of serious infections and then the development of OCD. So they they've looked at this both within individuals to be able to say, All right, if they've had an infection or. Are they more likely to develop OCD? And the results are Yes. And then also, then broadening that, looking at family histories, saying okay, for families with autoimmune histories or families with severe infections, are they more likely to develop OCD? And the answers looks like Yes. From some of the emerging data.
Gerald Reid 45:17
Have there have been cases in the research of kids who don't have a family history of OCD and still develop OCD after strep, like, even if you don't have a family history, that there's something about the strep. It's kind of giving credence to the fact that there might be something about this. It's not just a family history that's manifesting.
Sarah O'Dor 45:37
And I think that, again, it's so complicated of the world of thinking about, you know, genetics and environmental factors, like getting infections and all sorts of things that are so much to kind of pull apart with all of those. But you're right. People do not have to have family histories of any of these things to then develop them. You know, sometimes it could really feel like it's coming out of nowhere. In terms of making a distinction between OCD and pandas. I don't always make that distinction, maybe as much as other people sometimes, like I, you know, is pandas a subset of OCD, right? And then we'll find other types of mechanisms that cause OCD and other people that maybe you know, some might be more genetically related than others, right? So I, I also want to just conceptualize this in the terms of, you know, yes, we're talking about pandas specifically in terms of what we know about this subset, but are we really just talking about a subset of OCD more generally? And, you know, OCD is the clinical manifestation, right? It's just what we're seeing. And there could be different reasons for different people about why it's coming up, and this is one of the reasons.
Gerald Reid 46:47
Yeah, I think that sounds, sounds like a plausible conceptualization. I mean, think about depression. How many, how many ways can be someone become depressed, right? I mean, you can become depressed just by being isolated and not having social interactions. That could be one form, there could be a whole nother form. You can have tons of social interactions and still be depressed for different reasons, right? I'm not going to get into the reasons now you can do then we have a different episode about that, about depression. But you know, that definitely sounds plausible.
Alexis Reid 47:16
I think it's so interesting. And from a psychological perspective, I think the tricky part in diagnosing, treating, supporting, pandas, especially, or any of these diseases we've mentioned that sometimes we don't know enough about yet, that there's so much comorbidity, right? There's so many different things that can be occurring at the same time that can muddy the waters a little bit, which can complicate like providing and supporting and really understanding, especially for I keep picturing like the parent in the middle of all of this just being like, Well, what do I do? So you know, let's go back a little bit to some of the behavioral aspects that we can potentially help and support as you know, families are navigating how to best treat and understand what their child is going through.
Sarah O'Dor 48:03
Yeah, because I think there are, I think there's a lot that can be done, right? I think it's one of those things where, you know, it's hard, because parents can't really have much input in terms of what the medical team's going to do, right? But they can really get a support system in place for their kids. You know, with some of the resources on the ground and the places where their kids are interacting, right? So one of the main places is school, right? And I have to stress that kids will present with very different severity levels, right, in general, of even in terms of what's their max, but even at any given time. So when we start to talk about, what are the supports? What's a little bit tricky about these kids is the supports that they need might change pretty quickly, right? Compared to the to the kids that might have a more, you know, like ADHD, right, where they're going to get the supports in school and they're probably going to need this, you know, similar supports that change with them developmentally, you know, for a number of years. Versus these kids, where it might be a few months they need very intensive supports, maybe even to the level of a therapeutic school, versus, you know, then it gets better and they barely need anything, right? Maybe some accommodations to make sure that the nurse is still talking to the family if there's a strep outbreak in school, those types of things. So we have to think about these pretty flexible. It's not going to be one size fits all, but it is thinking broadly about, okay, what are those? And how do we be prepared to implement them pretty quickly and then pull them back as needed for the kid? And so, you know, one of the main aspects is really talking with the school and helping to educate them about that for your child, right? To them that might look that your child is suddenly becoming a behavior concern, right? They're yelling at other children. They might be throwing things in the classroom. They're doing odd behaviors. You know what is happening? You know it's important to help be the advocate for your child and help educate the school about what's happening so that you can. Help put a plan in place for them that can, that can meet their needs, not make them feel like suddenly they're a bad kid who's suddenly getting detentions or missing recess. You know, that's that's not what's happening. You know, they need different kinds of supports, and it can be really confusing for schools as well. So I think being a really good advocate in that setting is a really important role that parents can play and have control over.
Alexis Reid 50:22
All such great points. And I think internally, you know, when any of our internal systems are kind of off balance or off kilter, it can lead to a lot of emotional dysregulation. And, you know, instead of invalidating and saying there's a behavioral issue, really getting at the core of understanding and validating the child's experience, because, especially when they're young, they can't always express and articulate what they're going through, and things just feel out of control. They're going to, you know, express these behaviors which sometimes set off a chain reaction that isn't always positive and supportive. So really great points.
Sarah O'Dor 50:56
Because I'm even thinking about kids that I've seen where, you know, they otherwise were doing really well in school, right? And suddenly, like, the math is not coming to them, right? For some kids, this is affecting their ability to really understand math concepts. For others, like I mentioned earlier, the handwriting, right? Or their attention, you know, it could look like they suddenly have ADHD and they're just not able to concentrate, or their body is moving all over the place, and these are new things for them. They can articulate them. And the teachers are saying, what is happening, right? That sometimes it's very simple things of saying, okay, you know, your handwriting is more difficult, so let's say that you can type this, or let's get you some OT, right? So little supports like that, sometimes, or in the executive functioning supports, it would be the similar things like we would do for kids. Like we would do for kids with ADHD of recognizing they, you know, they might need more prompts, they might need more supports, they might need movement breaks, they might need fidget toys. You know, any of those things that we would think about for kids with ADHD can also be really helpful for these kids as well.
Gerald Reid 51:55
Yeah, and you know, may not be the cure for it. May not do everything for the child, but certainly helping the child to feel like a positive, secure relationship with the people in the school or, you know, with anybody in their life, right? Because when you feel out of control, you want to feel a sense of safety wherever you find that. And so, it's not going to fix everything, certainly, but it's definitely an important kind of foundation. You know, as you said, the kid can feel like they're not smart. They can think they're dumb. They can feel ashamed. They can feel embarrassed, right? I mean, you know, never met a kid who didn't have a behavioral issue, who didn't, on some level, feel embarrassed or ashamed afterwards, even if they're not saying it. They may be defensive or deflect, but you know, deep inside, they feel terrible about it, and they feel horrible about themselves. You know.
Alexis Reid 52:41
I was just gonna say historically, especially for kids with ADHD, oftentimes in a school setting or, you know, any community setting, sometimes those kids just get labeled as being behavioral issues, like you're saying, Yeah, and I love you know both of you talking to you both because you have such a broad perspective on things, especially as neuropsychologists going through and recommending, you know, things that might be helpful in different settings for the individuals you're working with. So you came up with such a great list of accommodations. And I think you know, for the educators out there who might be listening, sometimes, you know, we as educators freeze because we're like, we don't know enough about this. What do we do?
Gerald Reid 53:16
Yeah, you can't blame teachers for feeling overwhelmed.
Alexis Reid 53:20
Oh, absolutely not. So my advice, and going back to your point that you said, is, like, you know, just get curious. You know, when we're in the classroom, we often see students for a longer period of time than their parents sometimes do, right? Because we have them during the day and we have them when they're most alert, typically, right? And if we're noticing changes and patterns and behavior, it's really important just to share those observations so you don't need to, like, try to make a diagnosis, but just say, like, hey, something's a little bit off here. Can we investigate or, you know, asking the child, even if they're really young, like, hey, what do you think you need? What do you think might be helpful in this situation? Sometimes, getting curious can give us more information than we might ever expect. I always say, you know, young people, especially, they are more accurate observers, and they usually have more creative ideas than we as adults can even think about, even as experts. So sometimes just kind of like meeting them where they are, and saying, hey, you know, I noticed that, like your handwriting is looking different than it did before. You know, not to, you know, point out that there's something wrong with it. I never really like to think of things in black and white, like good or bad, all or nothing, but we can say, you know, there's, there's a change here. What information is this giving us? What can we maybe do with this? How can I help support you? Because sometimes that can open up a conversation which can lead to, you know, more helpful support, and, you know, getting the team that we're describing involved to really get to the bottom of what's happening for each individual.
Sarah O'Dor 54:46
Yeah, I have seen educators do some amazing things with these kids, where we've also seen so many families where the educators noticed something was off, and that was the thing that initially alerted the parents, right? Because they don't see their kids at school. But to say. Hey, you know, something is different here, something is going on. And, you know, some, you know, educators have suggested, like, hey, we had strep going around in the school. Like, why don't you get them tested? Sometimes they know enough to suggest that. And sometimes, like you said, it's just making parents a way of, hey, I'm noticing that something is different for them. And can we talk about, you know, what might be going on, and what may we be able to do to help support that. And for some kids, that has really been the change point of someone noticing the differences and saying, Hey, how can we help? This actually led them down the journey of, you know, figuring out what's going on, right? That's more serious, and being able to get good treatment for that. And so those supportive relationships have been huge for so many kids, and provide such an opportunity to do that for these kids that are having such difficulties and in the classroom, many of them, not many, but some will end up with, you know, school refusal, or they won't go to school for months. And you know, there's, it's, it can be very challenging to meet the needs in school, and sometimes you can't, right? There's not all kids that will be able to go to school when they are so sick, yeah, and you know, if there's kids that can go meeting them where they are and being able to put supports in place for them.
Alexis Reid 56:12
I'm so glad you brought up the school refusal piece, because this is a very common thing, especially for some of those pre adolescent and adolescent children who are going through this, because there is a little bit of shame embarrassment, where a lot of these kids have been very successful academically, and then all of a sudden there's this onset of pandas, which kind of just totally shakes them, where there's a lot of embarrassment, a lot of shame, and a lot of kind of withdrawal. And I also wanted to mention that sometimes when students do have, like a strong intellect, I see this too with ADHD and executive function challenges at a certain point in elementary school. You know, their intellect kind of carries them because the other skills aren't as needed, because things are highly scaffolded, and then all of a sudden, when the demands change, their presentation changes too. So also, like in consideration of all these other factors, really, again, meeting them where they are, and seeing what's most helpful and beneficial because you're right, sometimes the therapeutic school or maybe a different academic environment while the medical treatment is going on might be a better fit for the short term. But again, we want to just be mindful of, you know, the social implications of not feeling well, not being in control of your bodily actions or some of your emotional responses, and how that can play a role in, you know, later manifestations. I have this really unique insight as you both know, where I get to talk to students who, and individuals who have struggled for a really long time, and they're just starting to figure out what to do differently. And they describe a lot of these experiences where it just feels so uncomfortable and it feels so embarrassing that they don't have control, and just figuring that out is is a process.
Gerald Reid 57:58
Yeah, and so many downstream effects, like your both is saying, you know, you can, kids can lose friendships. They can get bullied, you know, and so forth. It can kind of make everything else worse. I'll never forget doing, you know, Sarah and I do neuropsychological evaluations. We cross paths at MGH, the LEAP program, who was started by Ellen Braaten, who did a great job creating such an amazing resource for the community here, and I'll never forget, you know, doing an assessment for a kid who had a lot of the OCD symptoms and the tics and had kind of behavioral issues that coincide with that, and kids have a hard time expressing how they feel about themselves, even adults do. You know, how do you feel about yourself? I ask that question to people a lot. I think, it is an underutilized question in therapy, how do you feel about yourself?
Alexis Reid 58:45
Hey, let's press pause for the listeners. Take a second and see if you can answer that question. Yeah, seriously.
Sarah O'Dor 58:50
I'm gonna start to use that now. Ask myself and ask my patients, yeah.
Gerald Reid 58:56
I mean, I try to get at the core of things, and it's hard and it's uncomfortable sometimes, but if you do it, you know, in a validating way, it's very helpful, I think. But, you know, I remember having a child, you know, sometimes we do projective measures and have kids do drawings, and I remember saying, you know, draw a picture of yourself. That's one of the drawings that we sometimes utilize. And the drawing of that this kid drew of himself. And you know, this is open up to interpretation. And you know, sometimes, you know, in the field, we have different opinions about how to interpret something like this. But to me, it seemed, you know, relatively interesting that the kid drew himself with, you know, as if he was the devil, right? And asked him what, you know, tell me about this picture, and, you know, really describing these negative things about himself that he couldn't verbally express, you know, with words necessarily. And so all this being said, you know, we're trying to look at this on a holistic level, not just for kids with pandas, but with anybody struggling. You know, with mental health or physical health, that there could be a really low self esteem that comes from it [or learning challenges]. Learning challenges, exactly right? You know, because our. Identity is built up as a kid around how good are you things? How capable, how accepted are you? And especially when you're a kid, you know, that's super important. So, you know, supporting that on a level that may not seem like the cure, may not seem like the end all be able to help a kid like this is a very important foundation. And so I guess I'm left with one last, one last question for you, Sarah.
Alexis Reid 1:00:23
I have so many questions to do this another time.
Gerald Reid 1:00:28
We'll definitely bring you back. Bring back the crew from Leap Junior, all the great crew that you have in your neuropsychological practice in Wellesley, right in Wellesley, Massachusetts.
Sarah O'Dor 1:00:39
Yes, yes, you're right. We have a nice crew out there of former leapers.
Gerald Reid 1:00:42
Gretchen, great people. So my last question for you is, you know, maybe there's not an answer to this, and maybe it's just kind of theoretical, but how do we express or explain this to a child? You know, almost like a bibliotherapy type of idea, because if the kid doesn't really know why it's happening, let alone the parents. What is the framing? I think framing is so important in our field, how you frame things really gives you meaning, and the meaning, usually, a lot of times, is where the depth and the deep influences come from, and with mental health, is the meaning we make about things. So what is the framing that we can use for kids, and maybe, you know, there's no clear answer to that. We're trying to flush that out.
Sarah O'Dor 1:01:23
That is such a good question. And I, I was fortunate to do a presentation on pandas with Julia Martin Burch, who you might also know from MGH. And she, she answered this question, and I'm going to try and give her answer, but it will not sound nearly as articulate as she did, because she's so just phenomenal in all of these ways. But I really think it's about helping the kid to understand that like they're they're still there, right? Any of these other times that we're using sometimes labels in a helpful way to externalize something that they're having challenges with so that it doesn't, it doesn't define them, and doesn't feel like a hopeless situation where this is them now, right? We have so many kids say things like, you know, they'll have a rage, right? They might be hitting their parents, and afterwards, it's like, why? I don't know why I did that. I don't know what's going on, but, you know, my there's something wrong with my brain. I don't know what's wrong with it. Make it go away, make it stop right? They can articulate that there, there's something different happening, and there's something that they don't feel good about, and I think helping to validate for them, of like, you know, there are people around here to support you, right? We're working on helping to understand this. And you know, you are still a fantastic person, right? That they the same thing that we do for other people that have, you know, psychiatric difficulties, right? Let's talk about the things that are going well. Let's help you to feel like you have some mastery and control over the aspects of your life that you can and you know, we're going to help you to to fight this, this other thing that's happening, right? And so helping to give them a sense of hope, because it can feel hopeless sometimes, you know, kids’ sense of time is so different than ours, right? And it's hard to know when something's going to end or be done, and you can't give them that, but giving them that kind of support and sense of, you know, we recognize like you're you still have all these wonderful things about you. Let's work together to help this part not get in your way.
Gerald Reid 1:03:23
Yeah, I love that. It's really echoing a lot of things Alexis you were saying before, and I like how you're saying. It's almost like, you know, when we treat OCD for kids, we externalize the OCD and say the OCD is not you. This is something that is kind of [circumstantial]. Yeah, it's like you're not trying to think these thoughts that are scaring you, or they're scary, they're upsetting, or that are feel unpleasant, right? You're not trying to it's kind of happening intrusively, and we're all going to rally around you and say, Okay, it's us against the OCD. We're going to kind of, you know, work against it, and we're going to help you to overcome this together. And it doesn't have to be a fight against it, but we're going to kind of support you, because it's not you. This is something else that's kind of affecting you, right? And so I really like that idea of, like, you know, you have a tribe around you, we're going to support you, and how important that is for, as you said, any type of challenges we go through in life.
Sarah O'Dor 1:04:14
And I think parents recognizing that, even though it's going to fall a lot on them, to be those supports that, you know, supports for them will be helpful too, right? This is, this is such a burden on families, and we've done research on this. Of just the level of burden that families are holding with this, it's so much. And so, you know, while we're talking about all of the things that you can do to help your kid, and you know, all of these insights that in hindsight, you know, able to recognize and those sorts of things you know, give yourself some slack too, right? Exactly? You know. You don't have to know all of the answers. Even we're talking about how much the professionals don't fully understand what's happening. You know, cut yourself some slack and make sure that you're also getting the things that you need, because when you get what you need, you'll be better able to help give your child what they need too. But it, but it's a lot okay? In the sense that there's other people going through the same thing, and so sometimes it's it's good to help seek out supports for yourself.
Alexis Reid 1:05:12
I think that just comes full circle, and it's so much of what is echoed here on the podcast consistently, right, that we don't always know the answer. Things are often very nuanced. We aren't our diagnoses, right? These are things we're working with and we can figure out, and it's okay to ask for help when we need it. And I think those are really difficult things for us as a society to really embrace, but I think it's so important for us to remember. So I'm so grateful for you to shed some more light on this really complicated diagnosis with pandas, and bring so much more to the conversation about, you know, how do we just support children and families in general, especially when they're going through something so complex, complicated, unknown. You know, we have some definitions, but it doesn't really tell us all of the why and how, but we're working on it, and I think that's what humanity and life is about. We're working on it. We're trying to figure it out together, and we're grateful to have these conversations to shed some more light on different situations that might seem really frightening and scary. So you're you're not alone. We're in this together, and thank you for joining us today, Sarah.
Sarah O'Dor 1:06:23
Thanks so much for having me. This was fun.
Gerald Reid 1:06:25
Thank you so much. Sarah.
Gerald Reid
Thanks for tuning in to the Reid Connect-ED podcast. Please remember that this is a podcast intended to educate and share ideas, but it is not a substitute for professional care that may be beneficial to you at different points of your life. If you are needed support, please contact your primary care physician, local hospital, educational institution, or support staff at your place of employment to seek out referrals for what may be most helpful for you. ideas shared here have been shaped by many years of training, incredible mentors research theory, evidence based practices and our work with individuals over the years, but it's not intended to represent the opinions of those we work with or who we are affiliated with. The reconnected podcast is hosted by siblings Alexis Reid and Dr. Gerald Reid. Original music is written and recorded by Gerald Reid (www.Jerapy.com) recording was done by Cyber Sound Studios. If you want to follow along on this journey with us the Reid Connect-ED podcast. we'll be releasing new episodes every two weeks each season so please subscribe for updates and notifications. Feel free to also follow us on Instagram @ReidConnectEdPodcast that's @ReidconnectEdPodcast and Twitter @ReidconnectEd. We are grateful for you joining us and we look forward to future episodes. In the meanwhile be curious, be open, and be well.
In this episode, we discuss a rare pediatric condition known as PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS is a phenomenon when a child has a spontaneous manifestation of psychiatric issues following a strep infection. The field has only recently started to research and understand this condition over the past few decades. Obsessive Compulsive Disorder (OCD) is a core feature of PANDAS, among others such as vocal or motor tics, that comes on suddenly and has a strong impact on the child’s life.
Dr. Sarah O’Dor is an Instructor in Psychiatry at Harvard Medical School and the Director of Research at the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, otherwise known as the “PANDAS Clinic.” Dr. O’Dor’s research seeks to identify the underlying biological causes, treatments, and mediating factors for recovery in childhood mental disorders. For the past 7 years, her work has focused on pediatric neuropsychiatric disorders, including Obsessive-Compulsive Disorder (OCD), mood disorders, and PANDAS. Her findings have resulted in several peer-reviewed journal articles and book chapters about childhood mental disorders. Dr. O’Dor contributions to the field of psychology and psychiatry have been recognized by organizations such as the American Psychological Foundation, the Anxiety and Depression Association of America, and the International OCD Foundation. Dr. O’Dor is also a Licensed Clinical Psychologist and has a private practice in the Boston suburbs specializing in psychological and neuropsychological assessments for children through young adults.
Be curious. Be Open. Be well.
The ReidConnect-Ed Podcast is hosted by Siblings Alexis Reid and Dr. Gerald Reid, produced by and original music is written and recorded by www.Jerapy.com
*Please note that different practitioners may have different opinions- this is our perspective and is intended to educate you on what may be possible.
