PANS/PANDAS: From Sudden Onset to Controversies

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) & Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus (PANDAS) are terms used to describe a set of pediatric-onset neuropsychiatric disorders. These conditions characterized by the sudden onset of obsessive-compulsive disorder (OCD), tic disorders, or both, following an infection, often with streptococcal bacteria (Strep Throat).

So why is there such discrepancy in the medical community regarding PANDAS and the onset/worsening of Tics and OCD in its patients?

Marla W. Deibler, PsyD, ABPP is a Licensed Clinical Psychologist and Board-Certified in Behavioral and Cognitive Psychology. She is the Founder and Executive Director of The Center for Emotional Health of Greater Philadelphia (CEH). Dr. Deibler serves on the Faculty of the Behavior Therapy Training Institute (BTTI) of the International OCD Foundation. Dr. Deibler also serves as President of the Board of Directors of OCD NJ, the NJ affiliate of the International OCD Foundation, Visiting Clinical Supervisor at the Rutgers University Psychological Services Clinic, and as a member of the Executive Council for the Association for Contextual Behavioral Sciences OCD Special Interest Group.



0:04 Evening, and welcome. Thank you so much for joining us for tonight’s webinar Pan slash pandas from Sudden Onset to Controversies, presented by doctor …. 0:15 My name is Katie Delaney and I’m the family. 0:20 And …, Outreach co-ordinator for the New Jersey Center for Tourette Syndrome and Associated Disorders. I will be your facilitator for this evening. 0:30 Before I introduce our presenter, I wanted to go over some housekeeping notes. 0:34 The audience is muted. If you are attending the live webinar, any questions you have can be submitted in the questions box located at the bottom of your screen. 0:42 During the live Q&A, the audience will gain access to unmute themselves because of this, we will stop recording right before we start Q&A. 0:51 At the top of your screen you will see a paperclip icon. 0:54 There, you will find a copy of the webinar presentation slides and our upcoming events. 1:00 At the bottom of your screen, you will see your reaction button to the right is an arrow. 1:05 When you click the arrow, you’ll see a few emoji’s appear such as a *****, et cetera. 1:11 Throughout this webinar, feel free to use these features to let our presenter know how they’re doing. 1:17 So, if you guys are able to find the react by N, if you can give me a thumbs up, or heart, just so I know you, beautiful, awesome. 1:29 Thank you, Marla. 1:31 OK, perfect. So definitely feel free to, you know, let Marlon know how she’s doing by giving her a thumbs up or a heart or anything of that sort. 1:41 For those viewing the webinar recording, you will not have access to these features. 1:46 However, you will be able to submit your questions for the presenter to answer your question. Your questions box is located to the left of your screen. 1:54 Questions submitted will be posted to our webinar blog for the presenter to answer. 1:59 This blog can be found on our website, … dot org, under the Programs tab. This blog will be monitored until Wednesday, February 28th. Any personal information will not be included in the post. 2:12 The New Jersey Center for Tourette Syndrome and Associated Disorders. 2:16 Its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on our site. 2:25 We do not endorse any recommendation or opinion made by any member or physician, nor do we advocate any treatment. You are responsible for your own medical decisions. 2:35 Now it is my pleasure to introduce our speaker this evening, doctor Mullen. Doctor … is a licensed clinical psychologist and board certified and behavioral and cognitive psychology. 2:48 She’s the founder and executive director of the center of the Center for Emotional Health. 2:55 Greater Philadelphia. Doctor … 2:57 serves on the faculty of the Behavior Therapy Training Institute, and the International MCD Foundation. 3:05 Doctor … 3:05 also serves as President of the Board of Directors of OCD in New Jersey, New Jersey. 3:13 the New Jersey affiliate of the International MCD Foundation visiting clinical supervisor at the Rutgers University Psychological Services Clinic. 3:23 And as a member of the Executive Council for the Association for Contextual Behavioral Sciences, OCD, Special Interest Group, that is a tongue twister. And with that, it is my absolute pleasure to hand the mic over to doctor …. 3:43 Thank you so much. 3:45 Thank you. Thanks, Katy. Thank you to everyone out there attending today or watching the video and to everyone at …. 3:54 I’m excited to be here to talk to you today about … 3:59 and pandas. 4:04 So I have a pretty ambitious agenda for us this evening. We’re going to be talking about an overview of what pandas and pans is. And a little bit about why the diagnoses are debated within the scientific community. 4:21 We’ll talk about the diagnosis and the treatment guidelines that are currently part of the guidelines for consensus treatment. 4:28 We’ll talk about assessment and intervention with emphasis on psychological interventions. And that is both individual and parent based interventions will talk about resources. I’ll give you plenty of resources to learn more about hands and pandas as well as some references. So if you’d like to lookups these guidelines yourself and read more about it. 4:54 So what exactly is pans and pandas? So pans and pandas have received significant amount of media attention over the last five years or so? 5:04 Hands stands for pediatric acute onset neuropsychiatric syndrome, and pandas, which predates the acronym pan’s is pediatric, autoimmune neuropsychiatric disorders associated with Streptococcal infections. 5:18 And essentially, what these syndromes are is a collection of symptoms that hang together in a particular way. We’ll talk about in what way that is. There’s a little bit of a difference in terms of the origin of the symptoms in hands versus pandas. 5:36 So in pandas, there’s a clear cause and in specifically with pandas, it’s the result of, um, an immunological response that is maladaptive in response to streptococcal infection. 5:51 Whereas in cans, the cause or the disease mechanism, may be less clear, may include other kinds of suspected infections or other kinds of underlying medical causes, as well as the possibility of an environmental trigger, such as a psycho social cause, the psychiatric symptoms, and the neurological symptoms. And so when we look at this syndrome overall, what we’re really kind of talking about is a collection of symptoms that are the result of autoimmune induced neuroinflammation or suspected neuroinflammation. 6:29 And the immune response. 6:33 essentially instead of targeting the infection, it inappropriately targets. An area of the brain, called the basal ganglia, which happens to also be the same area of the brain or one of the areas of the brain that plays a key role in both tic disorders And an OCD which is why we believe we see tic disorders and OCD and in individuals who present with these syndromes. 7:03 In terms of how this presents pans and pandas have a really abrupt, acute onset of symptoms as in, like overnight, really abrupt and really severe. And it’s typically first experienced in early youths The onset is typically somewhere between 3 and 13 years of age, although anyone could potentially present with the onset of these symptoms, even in adulthood. So it’s not, it’s not specific to a particular age group, but we typically see it in Early Youth First and it tends to have a relapsing remitting course, especially when it’s tied to specific known insult like like a viral infection. And so when there’s an active infection, the symptoms abruptly come on, and they are very significant, very severe, and then when that infection is under control, the the symptoms die down. 8:02 The prevalence estimates range greatly. But it’s believed that as many as one in two hundred individuals have a diagnosis of panzer pandas. 8:14 There are typically more males than females that present with, these are the syndromes, and a significant number of them have a family history of autoimmune or strep related illness. So we do believe that there is some genetic vulnerability to developing these syndromes. 8:36 And this is the constellation of associated symptoms. Again, it’s a syndrome. It’s a collection of symptoms that are experienced. So an individual with pans pandas may exhibit any number of these symptoms, typically more than one. And again, we’re talking about an abrupt onset with very acute symptoms, almost as if overnight. We see obsessive compulsive disorder symptoms. We’re going to talk specifically about this because this is the most often experienced set of of symptoms. We see restricted eating. 9:10 We see emotional changes like anxiety, like emotional lability, like depression, like irritability. 9:17 We see tic disorders and other kinds of motor abnormalities like vocal tics, motor tics, other kinds of movements. 9:25 And actually, early studies of pandas demonstrated that approximately 70% of the patients that they were seeing either presented initially with or developed over time with subsequent infected infections, concomitant ticks. 9:41 And that those who suffered from concomitant tix had greater severity of symptoms and reported more impairment both at home and in school during their periods of infection and acute symptoms. 9:58 We sometimes see urinary symptoms, such as urinary frequency, urinary urgency, sometimes, and you’re recess at the inability to control one’s bladder. 10:09 We might see sleep disturbances characterized by a lack of restorative sleep, difficulties with sleep, onset sleep maintenance, early awakenings with difficulty, going back to sleep, insomnia, physical, restlessness, sleep, terrors, bedtime, fears, and other kinds of disorders of sleep. 10:33 We see cognitive changes at times, such as executive dysfunction, like problems with attention, concentration, difficulties with planning organization, initiations, short-term memory deficits. 10:47 We see hyper activity. We see hypervigilance that kind of hyper arousal or hyper alertness. And oftentimes, people will report. 10:59 And an effect that is reflective of this hyper vigilance, almost like a terror stricken, appearance to their facial expressions. 11:09 We sometimes see behavioral regression, like separation anxiety, and an individual who doesn’t struggle with separation from the parents will see aggression and opposition ality at times tantrum in behavior in a child who doesn’t typically exhibit those types of behaviors. 11:26 Sensory hypersensitivity like sensitivity to light to sound to textures academic difficulties wherein school performance drops significantly dysgraphia, handwriting regression. We can see this when we look at examples of typical handwriting versus handwriting during these periods of of acute symptoms and infection where it’s really markedly different, both in handwriting and in drawing. 11:57 And so the constellation of symptoms varies greatly and is very noticeable and can be very, very impairing. 12:08 OK, so how did we get here? What exactly what exactly is this? 12:12 and how did we come to this conclusion in terms of these, the diagnosis of these syndromes? 12:21 So pans and pandas are currently considered overall and idiopathic disorder, In other words, they arise spontaneously. And the cause is the exact causes is typically unknown. 12:35 However, there have been longstanding questions about the role of infections, psychiatric disorders. We’re gonna talk a little bit more about this in a little bit. 12:44 And research for the past several decades, have demonstrated a pretty robust relationship between tics and OCD, in those with Rheumatic fever and synonyms, Korea. 12:58 So Rheumatic fever and synonyms, Korea are complications of group A strep infection, in which the infection attacks, the central nervous system, and specifically, the basal ganglia, like, we believe, happens in Kansas. 13:12 And when that happens, it can, it can create psychiatric symptoms and uncontrollable dance like movements in Sydney Corea and Rheumatic fever, and it can actually be quite dangerous if left untreated. 13:29 There have also been decades of clinical observations associated with motor and psychiatric symptoms and symptoms career published in the literature. That yielded this hypothesis in the 19 nineties, in studying obsessive compulsive disorder that perhaps group A strep infection could cause ticks and or OCD and that was termed pandas. The first time this was written about that in this in the literature, was a paper published by the individual who coined this, doctor Susan Speedo, at the National Institute of Mental Health in 19 98. 14:07 And since this time, panda’s, has broadened to be more inclusive of other possible triggers, other possible infections, and environmental assaults to the nervous system that could potentially produce inflammation and these neuropsychiatric symptoms, OK, So a little bit of a trigger warning for those of you who may have experienced pandas are pans in your life because there is a little bit of a debate in the scientific field regarding the diagnosis and treatment of pans and pandas. 14:48 Those who lives have been touched by pan’s and pandas have had a very hard time getting the kind of treatment that they need. It’s also quite complicated and quite challenging to treat effectively and to find a treatment team that is helpful. 15:05 And so, oftentimes, because there is a debate, um, individuals whose lives have been significantly impacted by this have found their experiences with the medical community to be mixed, sometimes quite invalidating of their experience. And so my intention is not to invalidate anyone’s experience. 15:30 It’s to provide you with a little bit of information to help you understand the the scientific debate, and why there’s a debate surrounding pans and pandas. 15:40 I’ll be spending the remainder of our talk tonight talking about that consensus guidelines for diagnosis and treatment and to talk about my experiences in working with pandas and Pam’s diagnosed patients. 16:00 So, to help you understand a little bit about what the critics have to say about pans and pandas. 16:09 There have been questions about prevalence estimates. 16:13 Critics assert that the advocates for pans and pandas made vastly overestimate its incidents because it’s very difficult to diagnose. It’s really a diagnosis of exclusion rather than a diagnosis of inclusion. There’s not a specific test that can identify panzer pandas. It’s really quite complicated. 16:35 We’re going to talk about what is involved in fully assessing and diagnosing, and properly treating these patients. 16:43 But the question of accuracy of prevalence has been brought up as a concern by those who are skeptical. 16:53 There’s also a question’s, a question of coincidental correlation with the argument that given the high prevalence of strep infection and other kinds of infections in childhood, as well as the high prevalence of OCD and tick disorders and Tourette’s. 17:09 That there is a chance temporal association that is very likely to be made, rather than a causal relationship, and they believe that pans and panda’s hasn’t been scientifically substantiated in terms of this causal relationship, that these infections truly cause these symptoms. 17:31 And they don’t believe that there’s enough research yet, to meet what’s considered to be the common standard of evidence for causality. 17:40 And they add concerns that throw cultures and blood antibody tests may fail to distinguish between someone who carries strep infection, and someone who has an active infection that can be problematic for someone. This to the tests aren’t there yet really to draw to support these associations. 18:00 And there are presently no means of reliably determining that causal relationship between infection and neuropsychiatric symptoms. 18:10 So the diagnosis, again, remains one of exclusion, which for skeptics is still problematic. 18:19 There have also been questions about the inadequacies of the existing body of treatment studies. 18:26 The existing body of evidence and treatment study is limited. 18:29 This is a really difficult set of symptoms to treat and the way that they manifest themselves and critics question why there is get to be a large study with high quality evidence supporting panda’s treatment. 18:45 Although the condition is suspected to have an immune mediated pathophysiology, Physiology, reliable biomarkers have also not yet been identified. 18:55 So, there are a number of, of real questions that are really out there for debate and debate by, you know, very, very knowledgeable scientists looking at whether or not this is well enough understood in order to be able to continue to treat patients in the manner in which they propose to treat them. 19:24 So let’s talk a little bit about what the proponents aren’t. 19:26 So the proponents argue that they’re really are decades worth of compelling case reports, in case series and other large epidemiological studies, cross culturally, that suggest, an association between psychiatric symptoms and auto immune conditions. 19:44 It’s well established that autoimmune diseases, such as multiple sclerosis, and lupus, are associated with neuropsychiatric symptoms. 19:53 This is decades worth of research, not specifically about panzer pandas, but about the relationship between autoimmune diseases and psychiatric symptoms and and neurological. 20:05 And then infections of various kinds, such as strap. 20:09 And even more recently, cov id cause maladaptive immune responses resulting in neuropsychiatric symptoms. And if you’ve read anything about Long coven, and some of the newer research out there related to code that, you’ll see also this same kind of proposed mechanism that there’s an infection that causes neuroinflammation. And that neuroinflammation causes neuropsychiatric symptoms in the long term, which they’re trying to figure out what, what to do about. 20:42 Also, pandas in pants has a very distinct presentation. I mentioned before that there’s a really abrupt onset, and by abrupt, I mean, like overnight, in individuals that don’t have these symptoms, typically. 20:56 And that there is what we call law, relapsing, remitting, remitting, or a saw tooth pattern like you can imagine what the teeth of a sol look like, right? 21:07 Like, goes up and down, that the, The symptoms rise in a very sharp manner upon infection. And when the infection is treated properly, the symptoms declined sharply, and that continues with subsequent infections. And so they call it a sawtooth pattern. 21:27 And I can tell you, from from experience and working with these patients. 21:32 Katie and I were talking a little bit before this, about how I first saw patients who had pans and Pandas, and I actually happened to be a fellow at the National Institute of Mental Health. Right after this seminal paper in 19 98 was was published. I was working in a sister lab studying OCD and I had the opportunity to see a few of the original patients who were treated by doctor Speedo. And it’s really markedly different than individuals who have OCD for example. I’ll give you an example of a of a patient that I saw. 22:07 This was an 11 year old kid who was an anxious kid, a good student, no behavioral concerns. I was to see him twice. I was actually doing some testing for him. 22:23 And so the first day that I saw him, when his infection was well controlled, presented pretty normally, we engaged in testing for a couple of hours, he was friendly, he was co-operative. 22:37 We had a productive time together doing the work that we needed to do. And the second time I saw him, he had an active Strep infection. And actually, I was unable to work with him, because his symptoms were so significant. He hadn’t slept the night before, because he was having a difficult time sleeping had nightmares. He was having psychotic symptoms. He thought that we were being watched through the walls as we were sitting at this table, getting to getting ready to engage in some some testing. 23:13 And he was very anxious paced around the room. 23:17 His handwriting was illegible, whereas a couple of weeks before, it was very legible. 23:24 And he was really having a really difficult time with identified strep infection at the time and treated with antibiotics. And a number of days later, once the infection was under control, his symptoms had abated. He also had a difficult time getting to to our session because he was so caught up in compulsions from his OCD symptoms and his parents had a very difficult time getting him in the car and getting them into the office. And so really overnight, symptoms become very cute and really debilitating. 24:00 That’s an example of what it looks like. 24:04 So, other other things to consider, how many people have reported positive outcomes with treatments such as antibiotic therapy as the patient that I described, plasma, for recess, and IVIG treatments. These are other kinds of medical treatments, We’ll talk about that as a component of treatment for pandas. 24:26 In a few moments, um, that pans and pandas can be viewed as a conceptual framework describing the ideological and phenotypically complexity of many psychiatric disorders, right? We’re just starting to sort of consider the idea that different kinds of infections can cause inflammatory responses or auto immune responses that become problematic, that result in a number of different kinds of physical symptoms, as well as psychiatric symptoms. And this might be a good model for how to view other kinds of constellations of psychiatric symptoms. 25:07 They acknowledge that, that, yes, large scale randomized, placebo controlled treatment trials do need to happen, but they are, it’s complex to inexpensive to conduct multi site treatment trials, especially when consensus treatment guidelines and diagnostic guidelines have to be kind of systematically set up and put in place in order to be able to study these things in a well controlled manner. 25:38 It’s also important to: remember, the complex problems typically require complex solutions, so I’m going to talk about the treatment. It is really complicated. 25:47 It can be very difficult to manage and end quite stressful for families, and so we need to sort of keep our minds open to keeping all hands on deck. This is a treatment team, sort of oriented problem. It takes a number of different people to be able to manage these symptoms effectively. And one of the arguments that that is made is that families need help Now. We’re just starting to be able to understand and think about psychiatric symptoms in this manner, and it’s going to take quite a while probably to unpack. 26:27 But families need help now, so we need to do what we can to be able to help their children, and provide them with some relief. 26:38 OK, so let’s talk about the treatment. what I’m going to be talking about now is the Expert Consensus Guidelines for the Clinical Management of Pans and Pandas that was published in 20 17. 26:50 And is updated periodically. 26:53 There are references for this at the end of the presentation, so if you’d like to read these guidelines, you can, as well as some, some other important papers as well. 27:04 It’s important to begin with the idea that this is going to be a multi-disciplinary assessment and treatment team. 27:11 As I said, because there are a number of different disciplines that are really important here to consult with, there needs to be a really clear and comprehensive, personal and family history. 27:23 There needs to be a really thorough medical history, and physical examination conducted, and medical tests, potentially carried out, as well, depending on the kinds of symptoms that the individual is having. It could be a range of different kinds of medical tests. 27:38 There need to be a rule out of a number of other possible underlying medical issues that can cause symptoms similar to the kinds that are presenting in pans and pandas because of symptom overlap. 27:52 So, things that needed to be looked at is they need to look at the possibility of autoimmune encephalitis, or Lyme Disease or thyroid disease, or Celiac Disease, or lupus, Synonyms, Korea, which we mentioned earlier. Cowered Kawasaki Disease Wilson’s Disease, Acute rheumatic fever, right. 28:13 These kinds of these kinds of medical problems can present with the kind of symptoms that you can see in pans and pandas. And so it needs, the individual needs to be assessed pretty thoroughly. 28:27 There needs to be a neurological assessment as well. 28:31 For the same reason, there may need to be an infectious disease evaluation. 28:36 mm there may need to be an assessment for immune dysregulation. There may need to be a genetics evaluation conducted. 28:46 There needs to be a thorough psychiatric, or, and, or psychological assessment, probably, both, in most cases, conducted, because there are also potential psychosocial causes of psychiatric symptoms that have to be ruled out, such as trauma or abuse, or grief responses, or other kinds of significant life events that can cause a significant acute onset of different kinds of symptoms. 29:12 There need to be there needs to be a rule out oral rule in of different kinds of psychiatric disorders that may better explain the symptoms like, like, tic disorders or tourettes. 29:25 For example, OCD, different anxiety disorders like panic disorder. There might be social phobia eating disorders, we might see substance abuse. We need to make sure that this isn’t the result of a substance or addiction problem. 29:41 A mood disorder like depression, like bipolar disorder, a psychotic disorder like schizophrenia, I knew I did, I described a young boy who had psychotic symptoms during his infections. 29:56 Autism, ADHD, learning disabilities, personality disorders are sometimes associated with these presentations, are fed avoiding restrictive food intake disorder. 30:08 So, there are a number of different kinds of psychiatric disorders that need to be evaluated for, to make sure that we fully understand what’s happening. 30:21 And this is what the treatment guideline looks like. 30:24 So, there are a number of components, the first component, the primary treatment, is treating the symptoms with psychoactive medications and psychotherapy, particularly cognitive Behavioral Therapy and Supportive interventions. 30:38 That’s what we’re going to be spending a lot of our time talking about tonight for the remainder of the session, since I’m a psychologist, and that’s my role in the treatment team. 30:48 The second component of treatment is removing the source of the inflammation with antimicrobial interventions. 30:56 And the third is treating the disturbances of the immune system with immuno modulator, Tory and or anti-inflammatory therapies. In cases where there is a clear relationship, clear evidence of neuroinflammation or post infectious auto immunity as the underlying cause of the symptoms as in, as in pandas. 31:27 Are we ready to move on? 31:29 Everybody. 31:30 I can’t see emojis, because I see my slides. 31:34 All right. 31:36 Let’s talk a little bit about assessment. 31:38 So, a comprehensive assessment in terms of the psychiatric or psychological assessment needs to include a number of components, just to kind of familiarize yourself with what this looks like. 31:51 There needs to be a comprehensive diagnostic assessment. That means that we need to get a really thorough personal and family history in terms of their psychosocial background. 32:01 And when we also need to assess symptoms, we might conduct a structured or unstructured clinical interview. 32:07 We are probably going to administer some symptom measures to make sure we fully understand the kinds of symptoms at the individuals experiencing, such as giving the Yale Brown, Obsessive compulsive Scale, the white box, or giving the the other kinds of measures that assess specific symptoms like the Global Tik Severity Scale, for example, to assess for ticks. 32:36 We want to make sure also to do a safety and risk assessment, because the symptoms can be pretty, pretty severe. And so we want to make sure that the individual is safe and not at risk for harm to self or others. 32:53 There also needs to be an assessment for psychopharmacological intervention, as I mentioned before, or the first line of treatment is to treat with psychiatric medications and psychological treatments. 33:05 And so, there needs to be a psychopharmacological assessment so that the prescriber can individually tailor symptom targeted medications to the individual, The first line of treatment is typically SSRI’s that’s the standard of care because obsessive compulsive disorder symptoms is usually the most common and most significant symptoms that an individual with panzer panda’s presents with. 33:30 And then sometimes other medications are added on, depending on the severity of the case, such as atypical neuroleptics or other kinds of medications, to treat the symptoms that are presenting for that particular person. 33:49 In terms of the psychological intervention, family support is really important. So the first thing that we need to make sure of, is that the family, the parents, or those caregivers are really involved. 34:00 And that we’re meeting the needs and multiple spheres of their life, right? We want to be able to keep them as functional as possible, to keep them functioning in school. For example, keep them functioning and home with the family. And so we want to make sure that we provide the family with a good amount of psycho education. 34:17 We want them to understand, the treatment rationale, why, as psychologists, we are working from a particular lens, why we’re going to be providing the kinds of services that we’re going to be providing for their symptoms, establish expectations, make sure that they understand that the course of the illness is not typical of OCD. For example, this is, this is a course that is going to kind of wax and wane. 34:40 Typically in that sawtooth pattern, but we’re going to be treating the symptoms accordingly, Um, we want to make sure we connect families to accurate, reliable sources. I will give you some at the end of this, so you will also be connected with accurate, reliable sources. 34:57 We want to make sure that we engage in school communication, Make sure that the school personnel understand what’s happening with the family, and make sure that the family is connected to the school and the services that they need in school. That includes things like making sure that the child has appropriate academic accommodations via 504 plan. If they have a 504, or that they have appropriate academic modifications, in the case that the child has an IEP, or needs an IEP. We want to make sure that we, as psychologists, also work with his family to help any teachers necessary with behavior planning in the classroom. 35:38 To make sure that we provide the kinds of plan that a teacher we’ll need to be able to maintain that child’s functioning in the classroom. In the least restrictive environment. 35:52 We may want to conduct a functional behavior analysis or even call in consultation from the schools, be CBA and engage any kind of therapeutic services in the school setting that may be helpful to the child. 36:05 Again, to keep the child in school as much as possible and functioning as highly as we can during their moments of there. 36:15 Symptoms, exacerbations. We want to make sure we have ongoing close communications. Which is really important between the school, and the, and the treatment providers, and the parents to make sure that they’re tailoring a school, or any school based interventions based on what’s happening at home, right? Because there’s a fluctuating course, There’s a lot more that needs to be done in terms of co-ordinating care, and making sure that the child continues to function well in all settings. 36:50 OK, so to help you understand the psychological interventions, just some base to some base foundations of Cognitive Behavioral Therapy, Cognitive Behavioral Therapy for anxiety in general, but OCD. 37:05 As well, because we’re talking about OCD symptoms in particular here is based on the idea that thoughts, feelings and behaviors are all inter-related in, either an adaptive or maladaptive way, and that we can shape behavior based on understanding the sequence between antecedents. 37:25 That’s the things that make and behavior more likely or less likely to occur. The behavior itself and then the natural consequences of the behavior, and that makes the antecedents and that pattern more or less likely to be carried out again. And cognitive behavioral therapy for anxiety disorders in general typically involves psycho education, as we talked about correcting erroneous thought patterns. And exposure therapy exposure therapy is essentially confrontation, with anxiety provoking stimuli, in a controlled, systematic manner, and eliminating compulsions or other kinds of avoidance behaviors, so that we can increase an individual’s functioning. 38:14 So what is OCD? You probably know what OCD is, but we’ll talk about it briefly. Obsessions are recurrent persistent thoughts, images, or urges that are intrusive, unwanted, and distressing. They are typically identified as a product of one’s mind. Obsessions are not pleasurable their unwanted. They result in significant distress, in anxiety, sometimes discussed, and, and a great deal of distress. 38:43 And that is met with attempts to ignore, suppress, or neutralize those experiences in a manner that we call compulsions compulsions are repetitive behaviors or mental acts that are carried out in a response to those obsessions in accordance with rigid set of rules. And these behaviors are carried out in with the goal of aiming to reduce the distress they’re experiencing or prevent what they see as a feared outcome. 39:20 And so the anxiety cycle essentially looks like this. 39:24 There is initially some sort of internal or external trigger. 39:31 For example, an individual who perhaps closes a door and has an intrusive thought that there are germs on the door. 39:45 They then miss appraise this occurrence as being potentially harmful. Thinking, perhaps, I have gotten germs on my hand from touching a doorknob and now I’m going to get sick and perhaps infect other people. And then they experience heightened anxiety as a result. And that’s difficult to tolerate. So, they engage in escape or avoidance behaviors are other ways to try to bring down their level of arousal, lend anxiety, and make what they’re fearing will be the outcome less likely to happen or perceived outcome less likely to happen. 40:22 And so they might do something like hand-washing, for example, which provides them with temporary relief. 40:28 And, but unfortunately, also reinforces the cycle. So they learn that this was effective. This was an effective way to deal with this particular anxiety in this situation. And so the next time they have an intrusive thought like this, they’re more likely to engage in that kind of behavior to try to bring them back down to a level of greater comfort. 40:53 And so, what we do in terms of treatment is we do a particular kind of exposure on this, but cognitive behavioral therapy called exposure and response prevention or ERP. 41:04 ERP is a systematic treatment that involves intentionally confronting obsessions. Those thoughts images and urges that an individual experiences that’s the exposure. 41:17 And then helping them to refrain from behaviors or reduce behaviors of the compulsions that are attempts to avoid or resist or reduce their distress, that’s called response privilege. 41:30 And what this does is, with repetition, this helps the individual too learn that the anticipated hit at the anticipatory anxiety is often greater than the distress associated with the stressor. 41:46 They learn that they can tolerate distress. 41:49 They learn that anxiety is temporary and that it does dissipate even if they don’t engage in the compulsive behavior. 41:58 They learned that the feared outcome rarely occurs if it ever occurs and they learn that they can tolerate and get through and that becomes stronger the more they engage in these exposures and refrain from the component compulsion. So in other words, the more they do that which causes them distress, the easier it becomes to do that thing. 42:25 And research on ERP specifically with pans and pandas, shows that not only do they benefit during a flare but they kept the results carryover from one exacerbation, two subsequent flares. 42:41 So we see longitudinal benefit from engaging in exposure and response prevention, even with this sawtooth pattern, that is clearly connected to an auto immune response. 42:56 We also help parents to understand the role that accommodations play. 43:01 And so what I mean by accommodations are accommodations or essentially, any kind of behaviors that are carried out to avoid upsetting or distressing an individual in the family and to help maintain the family’s functioning. 43:17 So, for example, no parent wants to see their child suffer. 43:20 It’s very hard to see your child suffer as a parent, and parents want to maintain the family’s functioning, Alright, do whatever we have to do to get, to get on with things, to help things function as normally as possible. And so parents will engage in all sorts of different kinds of what we call accommodations. 43:40 They essentially help the anxiety, in order to maintain the family’s functioning, and that has short-term benefit, and that it does help move the day along. 43:52 And it does reduce the distress more immediately. But the long term cost, is it unintentionally reinforces the anxiety and actually helps maintain it over time. 44:03 There are a number of different kinds of accommodations that families engage in, such as giving reassurance or advice, like telling a child that everything will be OK, for example, or providing them with information, arguing against … fear and outcomes. Let me tell you why. You’re fine, this is going to be OK. 44:25 Inviting Confessions, like offering to be an ear for OCD, worries, or providing a child with the opportunity to debate with anxiety, sometimes modifying family activities. Like, for example, if a child is afraid that they could potentially go into the medicine cabinet and take all the medicines, They’re not that they want to, in fact, they’re afraid that they would lose control and do it. That’s an obsession. 44:54 A family member might, for example, lock all the medicines up so they don’t have to worry about it and, um, and that will help the child to feel better in the short term. But in the long term it maintains the child’s anxiety by unintentionally teaching them to that, that needs to be done in order to help them to feel better but also reduce the likelihood that they would engage in such a behavior and put themselves at risk. 45:20 Engaging in compulsion like for example, removing knives from the dinner table. If a child is afraid that they could lose control and hurt themselves with a knife, for example. 45:31 Facilitating compulsion like buying excessive amounts of soap or disinfectants for someone who engages in washing rituals or convulsions. 45:41 Facilitating avoidance or distraction to help the individual avoid feeling distressed or or avoid potentially coming into contact with things that may provoke obsessions or trigger. Compulsions. 45:56 I’m assuming responsibilities or modifying responsibilities for the individual, like, if someone is afraid of the obsession is that someone is going to break into the house at night. And so they do a lot of checking of doors and Windows. The parent may lock all the doors, and tell the child that they’re going to make sure that they check all the doors at night, and that this isn’t the responsibility, and that they will take care of. 46:20 That seems innocuous, but can actually be a challenge for an individual with OCD. 46:29 So what we do with parents is we help parents to understand how to provide their children with quality support, what how to respond in a way that’s more adaptive for your child in a way that helps your child and supports your child, rather than helping their anxiety or helping their OCD. 46:47 So we help them to expect to express validation and confidence in their child. 46:55 So instead of saying something like, you’ll be OK to validate their experience, I see this is really scary and hard for you, But I know that you can manage these feelings. 47:06 And we help them to eliminate answering anxiety and practice, what we call non engagement responses. 47:11 So instead of saying something like, It’s OK, or it’s safe, we teach them to give neutral answers, like, OK, or to introduce a little bit of doubt. 47:22 To not give that kind of reassurance to say it’s possible, or what do you think, or, I don’t know, And help parents to practice modeling, willingness to experience anxiety. 47:33 Because although it’s unpleasant, it is a natural human emotion that we all experience to demonstrate acceptance, that these things are normal and OK, and, and that they are willing to have these experiences, and that they’re willing to tolerate it, Not just for their child, like being willing to tolerate the child’s anxiety, but also their own. 47:57 It’s important, as well, and this is, this is one of the hardest things for parents to practice, again, because it’s so hard to see your child. 48:06 And so, what we do in therapy is we help parents to systematically reduce family accommodations, and in the interest of time, I’m not going to cover a lot of this because we have a couple more slides to get to. And I want to make sure that we are able to take a few questions as well. But there are systematic ways to help families understand how to peel back the way in which they unintentionally accommodate OCD anxiety and provide the kinds of support their children need in order to feel more confident and become more resilient and master their own ability to manage difficult stuff. 48:50 So we’ll also do parent based interventions, lots of times. Parents of kids with panzer pandas will say, well, my kid, when they’re, when they are really symptomatic. They are not willing to participate in treatment. 49:02 And that’s OK. 49:03 There are things that we can do that are parent based in order to help families with their situation, parent based interventions, help shape behavior, buy, and improve family functioning by having parents change their behavior. 49:18 And as a result, the children adapt, And it depends on the kinds of symptoms that the individual is having. Again, it’s a constellation of symptoms, right? 49:28 So, just so you’re familiar with the terms for Oppositional, Aggressive, or otherwise challenging kinds of behaviors For young children we might we might conduct parent child interaction therapy or PCIT. That’s for ages 2 to 7. There’s also a treatment that’s adapted for slightly older children, ages 7 to 10, and that helps in, that helps parents to focus on productive, positive interactions with their children, and learn skills to shape behavior. 49:58 There’s also parent management training, which is called PMT, for ages 3 to 13. 50:05 That again, is a parent intervention, focused on behavior change, learning parenting skills related to those antecedent behaviors consequences. There’s behavioral parent training, which is slightly older kids, preteens and teens. It helps parents to implement effective and consistent communication of rules in the household routines and strategies to shape behaviors. 50:30 And then their space. So, space of … is supporting supportive parenting for anxious childhood emotions. This is a treatment for parents, that helps them to systematically peel back those accommodations. There’s a very specific gentle, systematic way that this is carried out. These are the steps here up on the screen. 50:53 Space is a great intervention for anxious kids who are not in a space that they can work in individual therapy. 51:02 It can also work in conjunction with individual therapy if parents have accommodations that they’re struggling to peel back and can help kids make games more quickly. 51:15 And there are other kinds of behavioral interventions as well. 51:18 Just so if you’re familiar with some of the terms, CBT or Cognitive Behavioral Therapies are a group of interventions that can help with a lot of different kinds of presenting problems. 51:31 There’s comprehensive behavioral intervention for ticks that probably a lot of you have heard of. This is specifically for tick symptoms. There’s habit reversal training. That is for tic disorders, which is also see a bit as well as body focused repetitive behaviors, like hair pulling, skin picking, nail biting behavior. 51:52 There’s Cognitive Behavioral Therapy for Insomnia, which is a treatment specifically for sleep disruption disturbance, there’s behavioral activation and interpersonal therapy. It’s used for the treatment of depression. 52:03 There’s organizational skills training, that’s helpful for individuals to learn compensatory strategies, for ADHD and for executive functioning difficulties. 52:15 There’s dialectical behavior therapy that can be helpful for emotion dysregulation and inner personal challenges and there’s acceptance and commitment therapy. 52:26 Which is another, it’s, it’s a, another, a wide ranging therapy that’s useful for a lot of different kinds of presentations. 52:37 That was a lot of information to throw at you. I realized I apologize for rushing through some of that but I also wanted to get to your questions. There are some resources here. 52:46 Here are some really reliable websites that have information about pans and pandas, also networks of providers of various disciplines that are educated and pans and pandas that can provide assessment and treatment. 53:05 Then, there are also some references, the references in red are those more recent concensus, diagnostic and treatment guidelines, and some other references that are interesting reads as well. 53:24 Awesome. Well, thank you so so much, Marilynne OK, so before we start Q&A, I’m going to be stopping the recording. For those watching the recorded version, thank you so much for attending. There’ll be an exit survey, which we appreciate you completing. An archived recording of this webinar will be posted to our website and … dot org under the Programs tab. 53:45 All questions submitted during the recording of viewing will be posted to the blog for the presenter to answer this blog will be open and monitored until Wednesday, February 28th. Any personal information will not be posted. Our next presentation will be Hypnosis, Apprentice, the power of your mind presented by Tracy Blank. 54:02 It scheduled for Wednesday, March 20th at seven PM with the reporting the following day Thursday, March, first at two PM, We offer Professional development certificates for school professionals and school nurses that attend the live recording of the webinar. To register for either time, please visit … dot org slash webinars, and with that, I’m going to stop the recording.


  1. Jessica says:

    What do you find to be the connection between mycoplasma and PANS

    • Marla Deibler, PsyD, ABPP says:

      There is a suspected link between mycoplasma and PANS as noted by case studies in the literature. Here are a few references to such publications:

      Chambert-Loir C, Ouachee M, Collins K, Evrard P, Servais L: Immediate relief of Mycoplasma pneumoniae encephalitis symptoms after intravenous immunoglobulin. Pediatr Neurol 41:375–377, 2009.

      Ercan TE, Ercan G, Severge B, Arpaozu M, Karasu G. Mycoplasma pneumoniae infection and obsessive-compulsive disease: A case report. J Child Neurol 23:338–340, 2008.

      Piras C, Pintus R, Pruna D, Dessì A, Atzori L, Fanos V. Pediatric Acute-onset Neuropsychiatric Syndrome and Mycoplasma Pneumoniae Infection: A Case Report Analysis with a Metabolomics Approach. Curr Pediatr Rev. 2020;16(3):183-193. doi: 10.2174/1573396315666191022102925. PMID: 31642785; PMCID: PMC8193809.

  2. Kaylee says:

    Can PANS/PANDAS be familial?

    • Marla Deibler, PsyD, ABPP says:

      Expert consensus suggests that there is a link between certain genetic factors and a predisposition to PANS/PANDAS, although no specific genes have yet to be identified. Research indicates familial commonalities; for example, 70% of individuals with PANS/PANDAS have a family history of autoimmune disease or strep related illness.

  3. Anna says:

    Thank you so much. very informative. We honored Dr. Rosario Trifiletti, MD, a leading neurodevelopmental pediatrician, and our gala event. So many parents are unaware. We hope to get the word out. I will share your presentation with my staff. PANDAS/PANS Institute Westwood, NJ, if anyone wants to know.

    • Marla Deibler, PsyD, ABPP says:

      Thank you for sharing resources with others. I’m glad you found this useful.

  4. Rose says:

    I was surprised by your comment that psych drugs are first step in treatment followed by then anti microbials. My experience is to do abx first along with anti-inflammatory meds. Psych meds can have side effects that can make things confusing. What is your opinion on this?

    • Marla Deibler, PsyD, ABPP says:

      Experiences vary widely and appropriate treatment planning is dependent on many differing factors related to an individual’s experience with the syndrome. There are expert consensus guidelines to diagnosis and treatment that you can read for more information about this complex process and decision making process:

      Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. (2015). Journal of Child and Adolescent Psychopharmacology. https://doi.org/10.1089/cap.2014.0084

      Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I—Psychiatric and Behavioral Interventions. (n.d.). Journal of Child and Adolescent Psychopharmacology. https://doi.org/10.1089/cap.2016.0145

      Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part II—Use of Immunomodulatory Therapies. (n.d.). Journal of Child and Adolescent Psychopharmacology. https://doi.org/10.1089/cap.2016.0148

      There is also a wonderful, comprehensive webinar delivered by Susan Swedo, MD on the topic of recognition, diagnosis, and treatment, that you can watch: https://youtu.be/D3F9VJ98D-A?si=Dr1pj0l0obf-DZzk

  5. Justin says:

    As a psychologist do you diagnose pandas or pans or is that something that usually comes from a pediatrician/neurologist/etc.?

    • Marla Deibler, PsyD, ABPP says:

      Psychologists are often part of the assessment and treatment team, which is typically multidisciplinary in nature due to the complexity of the diagnostic and treatment management process. The diagnostic process may involve:
      – Personal and family history
      – Medical history and physical examination
      – Medical tests (may include: EEG, swallow study, sleep study, lumbar puncture, throat culture, blood draw)
      – Neurological assessment
      – Infectious disease evaluation, when warranted
      – Assessment of immune dysregulation, when warranted
      – Genetic evaluation, when warranted
      – Psychiatric / Psychological assessment