Neuroimmune Disorders and Big, Baffling Behaviors with Dr. Qazi Javed {EP 97}

Hey y'all welcome back to The Parenting After Trauma podcast. It's me your host, Robyn Gobbel. Today starts a three episode series on neuro immune disorders and big battling behaviors. If you're not sure if neural immune disorders is something that applies to your family, I encourage you to keep listening. Anyway, I have some pretty special things planned for the next couple episodes. And what I've come to realize is that there are a lot of causes to big baffling behaviors, trauma, and neurodiversity, just to name a few. And yes, neuro immune disorders. Regardless of the cause of these behaviors, there are a lot of overlapping features. So I think anyone tuning into this podcast will really benefit from this series, even if your situation has nothing to do with the neuro immune disorder. I first started learning about neuro immune disorders and their impact on the nervous system and behaviors probably like six or seven years ago, not that long ago. And if you aren't sure what a neuro immune disorder is, don't worry, just keep listening. Today's guests will explain all of that. So, yeah, six or seven years ago, I probably was maybe some of the first times I'd started hearing words like pans or pandas. And I really didn't know what that was, I wasn't using the word neuro immune disorder, I learned just enough to ask a couple really basic questions in my intake sessions to know if it might be appropriate to refer a family for assessments for a neuro immune disorder. But really, that's it like I learned almost nothing. It was on my list of things to really learn more about and explore further. After I closed my practice in Austin in 2019, and moved to Michigan, I really wanted to learn so much more about neuro immune disorders like pans, so pediatric acute onset neuro psychiatric syndrome, I had just sort of had this feeling that it was actually a big contributor to the baffling behaviors and the families that I saw. And contributor that was still largely unknown, and very hard to get assessed for, let alone any treatment for. So I thought, you know, we'd move and I'd have all this like free time, and I could dive into learning something new, which of course did not happen to all, mostly just because I was just tired. When we moved. I probably didn't do any new learning, except maybe like where the cool local hiking trails were and how to boat on big open water like Lake Michigan, which was very fabulous learning. But I did not sit down and learn about neuro immune disorders. However, as the months progressed here and our new life, I came face to face with having no choice but to learn completely trial by fire, about neuro immune disorders. When my husband was diagnosed with one, I remember looking at his labs, understanding them just enough to kind of decode just some of them. And thinking to myself, like, Hmm, this sounds a lot like pants, except he's a grown up. And pants has the word pediatric in it, right? Again, I knew nothing, hardly at all at that point. And as it turns out, neuro immune disorders certainly don't have an age limit. And we were thrust into now. Now I'm kind of we're on the back end of it, life is still challenging, but so much progress has been made, which is what's allowing me to even record these episodes and talk to you about it. But, you know, when at offers started happening, I mean, we were just thrust into a absolutely terrifying and overwhelming world. And under researched, underfunded, and extremely complicated, serious medical condition. That for a long time, stole my husband from me. There were time periods, where every single day probably multiple times a day. I thought to myself, Okay, this is why I do what I do, my career, and like ferociously, somewhat obsessively studying the brain studying the nervous I'm working with kids with complex trauma, vulnerable nervous systems and baffling behaviors prepared me for the experience of having a family member with a serious neuro immune disorder that prepared me to tenaciously work to see beneath behavior. It prepared me to not take behavior personally. And when I say it prepared me to tenaciously work to see beneath the behavior, not take it personally, I mean, like some of the time, I am as human as everyone else. And sometimes it was all just too much. And I lost sight of it, I couldn't see it. But I was, thankfully, always able to come back to this is a behavioral symptom symptom of a nervous system, brain based, serious illness. And just worked hard to stay anchored. And these are symptoms, these are symptoms, these are symptoms. This is not who my husband really is. Right? So my history, my professional history, of being so fiercely committed to learning about the brain, understanding the nervous system. I mean, it's maybe in some ways, like the primary way reason we've gotten through the last couple years. It's allowed me to always return to hope. Because y'all turns out regulated connected husbands who feel safe, behave well. And for a very, very long time. My husband's inner world was sending him intense and overwhelming cues of not safe because of what was happening related to his neuro immune crisis. Understanding this that regulated connected husbands you feel safe, do you? Well, it really almost certainly saved our marriage, but it was still an absolute nightmare. I remember thinking at some point that one day, I would, of course, have to use our experience to help families who are impacted by neuro immune immune disorders, pans, and pandas, Lyme and toxic mold, right. So this podcast series is my first offering. Today, I'm talking to Dr. Kazi Javeed, an integrative psychiatrist in Austin, Texas, who serves on the Governor's Advisory Council for pants. Dr. John Reed was a colleague when I lived in Austin, and we often shared patients, a brilliantly talented integrative psychiatrist. But this was actually the first time I'd had the opportunity to really talk to him in depth, y'all, this is a powerful interview, Dr. Dryvit is compassionate, and wise, and thoughtful. And just being with him for the hour, that I had the opportunity to connect with him over zoom was powerful. So that's the first episode in this three episode series. Next week, you'll get to meet my dear husband, he's agreed to come on, and give you a bit of a peek inside the mind and body of someone who feels completely out of control of both. Regardless of the origins of your child's baffling behaviors, I think you'll find new understanding and hope hearing from someone who might actually be a lot like your kids, just with much more ability to articulate the jumbly awful, confusing, wrapped experience of having an extremely dysregulated nervous system. So that'll be next week. Then the week after that, I'll be back offering you a glimpse into my own personal experience to be the caregiver for to love someone to be unwilling to leave someone in a serious neuro immune crisis. Again, even if your child's baffling behaviors come from a different nervous system vulnerability. I'm hoping you'll feel seen in my attempts to articulate what a wild and at times traumatic experience this has been not just for my husband, but also for me. So my hope for this series really is twofold one to just introduce you to the concept of neuro immune disorders to especially to families, you haven't yet heard of this or had the opportunity to really explore it, because you are listening. Neuro immune disorders have symptoms that look like so severe behavior problems and mental illness and they aren't getting diagnosed correctly and therefore they are getting treated correctly. I hope this series brings awareness to families and kids who deserve to be assessed for Neuro immune disorder. Second, I want this series to bring a moment of feeling seen and known for everybody listening. Whether your child has a neuro immune disorder or some other cause for their baffling behavior. I know you are lonely and overwhelmed and you cannot find the help that you need. We discuss all of this two weeks ago in my episode on when parenting is traumatic. So in this series, it is my hope that you can feel that you are not alone. And I want you to know that yes, sometimes it is super hard to find. There is hope. And there is help. Alright, y'all, let's get started with this series, shall we?

Robyn Gobbel: Hello, everybody, welcome back. It's me, Robyn. We're on the Parenting After Trauma podcast. And today I am bringing a guest to you, Dr. Qazi Javed, who has a medical practice in Austin, Texas. I'm gonna let Dr. Javed tell you all about him. And the work that he's doing. I've had that- I had- this is actually my first time speaking directly to Dr. Javed. But when we were both living and practicing in Austin, we had the opportunity to share some clients. I've just- I've known of the work that he is doing for many, many, many years, have so much respect for, for what he's doing and how he is practicing medicine with such a vulnerable- just a vulnerable community, people who need really good medical care. And so I'm just so grateful. Thank you so much for agreeing to take this time out of your very busy day and schedule to connect with me on the podcast. And also just to connect with everybody listening. So welcome, Dr. Javed. 

Dr. Qazi Javed: Thank you! Thank you for- thank you for having me. 

Robyn: Yeah, I'm excited to dive in. But I do want everybody listening just to have some context about who you are, how you practice, your area of expertise. And so, if you want to just give us a little background about that, I would love that. 

Dr. Javed: Of course, of course. So the- so I'm a- I'm a- I'm a board certified adult psychiatrist and a child and adolescent psychiatrist. So I see both communities of these- of these people. I'm- so- I basically started off with my a psychiatry residency, and then I did my child psychiatry specialization. And after that, I also was very drawn to psychotherapy. And so this, in my mind, there was this mind body kind of- kind of a thing that I think all of us it was a continuum, or a combination that all of us existed on. And, you know, the way that psychiatry is being practiced in a lot of areas of our country, for whatever reasons, is very biological based. And I wanted to include something more in it. So, you know, I trained in- I trained in herbal medicine, I trained in functional medicine. So I- I started doing some of the root cause analysis of why people get sick, why people get ill. And then along with that, you know, I've always had a big interest in psychotherapy, and then spirituality, and some of those things as well. I've been doing a little bit work in that area. And then I think over a period of time, I realized that it's not the medicine that we give people when they are in difficulty, we are the medicine, right? So there needs to be certain work that needs to be done on ourselves as practitioners. And that just enables us to be a conduit for- for healing to pass through- through- through us. If healing is going around looking for- looking for the next person to go to then, you know, it will go to someone who has already experienced it. So we'll go through that. So- so, you know, I started doing that. And then sure enough, I ended up in working in some of the some of the psychedelic spaces as well. Ketamine assisted psychotherapy, or some of the non ordinary states of consciousness. So- so I've been doing a lot of things, whatever catches my fancy.

Robyn: Yes, I mean, I've just always had such gratitude and appreciation for finding a colleague who, one is like willing to work with some of these, you know, exceptionally complicated and complex cases. Such as you know, across my door in Austin. And I'm sure this is true for you, too. You know, so often not the family's first professional and sometimes not even the fourth or the fifth, right? They've worked so hard to find somebody who can see them who can help- somebody have the patience even to like really see all of them. And I think- in- in my specific field, I think professionals having the patience in themselves to work with a family or a client when they really weren't sure what was happening. Right? I think it takes a lot of guts and a lot of bravery to say like, gosh, I'm really not sure what's happening with you, or with your family, or with your child. And I will stick with you while we explore this together.

Dr. Javed: Yes, yes. One thing is for sure that there is, this is going on, right?

Robyn: Yes. So yes, so much. And to find a psychiatrist, and to be so lucky that you were there and Austin, who approached, you know, working with kids and families in a similar way, with so much curiosity. And with so much curiosity, like finding if possible, like the root cause. Because, again, I'm sure you know, this, right? Like these, these families who are on their fourth, fifth, sixth professional has been lots of- lots of what I call kind of band aids, like lots of let's try to fix the symptom, but- but not enough looking at like, what what's causing these symptoms. So I've just had so much gratitude for you and the work that you do, and in the mutual clients we've shared and the- the respect for the clients and for what's happening with them. And then I've come to see, you know, as I moved away from Austin three years ago, and continue to just stay aware of what you're doing. And that at one time you became involved in, and tell me because I'm not going to get it right. But the governor appointed you something to do with PAN/PANDAS neuroimmune. So tell me about that and- and how that came to be?

Dr. Javed: Yes, so, either- thank you for all those kind words. I mean, you know, a lot of them are probably exaggerations, but thank you for the sentiment. The- I- So, you know, so PANS/PANDAS is something that I started seeing a lot of children and families struggling with. And, you know, there's, it's so PANS, if you might- neuro immune condition, in which it's- it's an acute onset neurological symptoms that happen in a child, or- or sometimes an adult, and usually happen secondary to immune system involvement. And if the immune system is involved, secondary to infections, or other- other reasons, can also can also cause it, but- but this is an area of exploration. An area that is actively being researched. So there's not a lot of clinicians who know what it is all about. I mean, we got hypertension, right? Like if somebody has hypertension, we know what it is, we know how to treat it, we know the numbers, we know the data of long term kind of things that happen if hypertension is not controlled, what kinds of things we can do, lots of data. So when somebody walks in with- with hypertension, a cardiologist or a primary care physician, they know exactly how to treat that. When somebody with a neurological and acute onset neurological symptom walks in, that is actually not only a neurological symptom, but it's just this combination of neurological, mental health, psychiatric, and physical, or the physical symptoms. There's no cookbook kind of data that we have available. So that's a time that is very it's- it's tricky. Meaning if at that time, you know, the clinician who is seeing that family has 10 minutes, 10 minutes is not enough time to be creative. You know, you will fit things onto the- onto the- onto the symptoms and get people out. So recent study actually like neurological like PANS kids. They had to see about 12 providers before they actually got diagnosed, right?

Robyn: Yeah. 

Dr. Javed: So it's an each- each passing day is a day that is like- a day in my life, it might not be as valuable as a day in the life of a child, right? A year in my life might not be as valuable as a day or a week in the wake of a child. They’re learning and developing so quickly. 

Robyn: Yes. 

Dr. Javed: So any delay in recognition and any delay in management treatment, it matters. 

Robyn: Yes. 

Dr. Javed: So- so anyway, so I got- I got appointed on the- the governor's council for PAN/PANDAS, they're trying to- they got some of the some clinicians together from around the state who have experience working with some of this. And so I found the psychiatry part of it. And the mental health part of it. We have a neurologist in the team and immunologist, hopefully, and pediatrician, and so- so there's, it's a multidisciplinary, kind of a- kind of a team that gives recommendations to the Governor about how to approach this as a public health crisis.

Robyn: Yes. So, as you know, the vast majority of the families that I work with are parenting kids with histories of trauma. And there's this way, that when your child has a history of trauma, and we see this, you know, significant nervous system vulnerability in these really serious, scary, confusing, overwhelming behaviors, that, you know, we've made so much progress and seeing these behaviors as a, I say like, what we see on the outside that lets us know a little bit about what's happening on the inside.

Dr. Javed: Yes. 

Robyn: Yes. And I also am seeing, and as I've learned more and more, you know, as- as- as I was winding down my career in Austin, so that was three years. It was probably just maybe two or three years ahead of that, where I was starting to hear where it's like PANS, and PANDAS, and neuro immune. And so knowing it was a thing and knowing- knowing to ask if, for example, has your child had a recent, you know, recent case of strep, right? Like I started to become more aware of that, and maybe even before we go on, maybe even if you want to say like why- why I would even be asking that.

Dr. Javed: Oh, yes. So you're right. So, you know, our immune system can be set off by several things. 

Robyn: Yeah. 

Dr. Javed: You know, infections is one of them. 

Robyn: Yep. 

Dr. Javed: So whenever our immune system is set off with infections, there's all sorts of changes that can happen in a body or in an immune system that is not robust. That means that is not regulated to know when to start, when to stop, and how much to how much to attack, right? 

Robyn: Yes. 

Dr. Javed: So that dysregulation in the immune system is- is something that can cause- cause- cause difficulties. So infection is one so streptococcal infections. These are- this is one of the earliest docume- documented case reports that they started seeing in rheumatic fever, that post streptococcal infections, people had heart problems and subsequent heart failures. And similarly, they had movement disorders, neurological symptoms and onset of obsessive compulsive disorder and ticks. So they started calling a pediatric autoimmune neurological disorder associated with streptococcal infection, PANDAS. 

Robyn: Yeah. 

Dr. Javed: So- so yes, to your point, that's-. 

Robyn: So- somewhat for my own education, but also just for everybody listening. So- So PANDAS is maybe considered like, a subset of PANS. And then there's also these other causes? You know, like, Lyme and toxic mold exposure. Would you call- would you still say- even if the origin was was a Lyme disease, for example, would you still call that a PANS from a big picture perspective? Yeah.

Dr. Javed: I would- I would call it a neuro immune. 

Robyn: Neuro immune. Yes, okay. 

Dr. Javed: And that might be because- because of this, I mean, this term PANS has become very polarized, right. 

Robyn: Yes.

Dr. Javed: Like it has flipped the medical community into people who believe in it or don't believe in it. 

Robyn: Yeah. 

Dr. Javed: And sometimes just that wording by itself becomes a barrier to healing, to access of care. You know, if, like, if somebody goes over and you know, and this happens so often, right? Like that, there's a you know, a child develops these problems and a friend whose child also had this problem, they will tell the parent, you know, check out this Facebook group, right? Like the PANS or PANDAS Facebook group and they go over there. Somebody over says, Well, you know, you got to take it- this is PANS/PANDAS classic, you got to take you to take, take your child to the pediatrician. You walk into the pediatrician and you say, My child has PANS or PANDAS, depending on the history, because the practitioners they haven't- they don't know what- what all this is about. The academia has not backed up, you know, algorithms of what- what to do. And it's- it's an entity that is questioned. So, you know, there'll be- the practitioner will respond in a certain way based on their experiences and- and that can- that can- that can certainly hurt. But if somebody goes and just describe symptoms, right? And neuro immune is a slightly more- is a term that some people will expect. They can work it up. They can refer to a rheumatologist, they can refer to, you know, an immunologist, if needed or-. So- so there is this thing, you people can call it, whatever, but there's this thing for which we have- we have no cure right now we- be trying to figure it out.

Robyn: So there's these- all these different causes or etiology, then- then ultimately, what we're seeing are these- these neuro immune conditions that are then causing these symptoms. And so to then to kind of circle back so what I've started to say before is, you know, I have - you know, have a practice, and I work with families is full of kids who like, the language I've started using, and people seem to really resonate with are these vulnerable nervous systems and baffling behaviors.

Dr. Javed: Amazing.

Robyn: Yeah. And- and then, then we've done such a great job of helping people start to understand, especially relational trauma, and how that really can impact the developing nervous system. And as you know, related to these baffling behaviors that are leaving parents just so confused, so overwhelmed, like, what- what even is happening to me?! And that's amazing, we've- stuck on- there's so much progress happening there. And I'm also starting to see experiences where we're getting to tunnel vision to there. Where we're putting it all on this relational trauma has relational healing. And for so many of the parents, which- which it absolutely does. Relational- the relationship is involved in all healing. But what I've come to see are parents who are like, “well, my kids’ not getting better. That must mean this is my fault. Somehow, I'm not providing them with the relational experience that they need, I'm not giving them the felt safety. This is all my fault”. And we're really overlooking, first, just so many things, like there's so many things that can be happening for kids inside their body that are disrupting the state of their nervous system. And sure, we always need to pair that with, you know, good relational healing and relational experiences. But when we're overlooking these other, you know, possibilities that like, we're like a neuro immune disorder needs more than really great parenting, for example, like, one, we're leaving kids without the care they need. And, two, we’re leaving parents feeling like complete failures. Like, well, they told me it was my job to, you know, be the relational experience that my kid needed. And then they would- their relational trauma would heal, but my kid isn't getting better. And so we're leaving families just- just stuck with, kind of, no explanation for what's happening or no way out. And so I think, like, you know, one of my objectives for talking to you today, one was just like, introduce this concept to families, because I know there's people sitting there like, “oh, I've never even heard of this before”. And then the second objective was, are there anything that would- anything- is there anything that would come to mind for you, and there's some things that maybe would come to mind for me, that are good markers for families to be like, you know what, something's really missing here. In, like, the overall assessment of what's happening my child and it's time for me to get help outside my therapist’s office or even outside just my psychiatrist's office. It's time for me to really start trying to find answers from somewhere else. Like what- what maybe would be some of those things, especially for parents who do- their kids have a history of relational trauma. So it's like, everybody's like, well, this is because of their trauma.

Dr. Javed: Yeah, yeah. That's a very, very, very great question. But like, so varied. Because on one hand, so you know- and study, right? Like, you know, immunoglobulins are like one of the things that fight off illnesses, right? So there's actually, I mean, study, right? Like you can measure immunoglobulins in your saliva. And you can tell how- how stressed you are. So if like people are shown videos of people screaming at each other- each other or any violent kind of an infraction of interpersonal relationship or any traumatic kind of an image, it increases your immunoglobulin level that's increasing in the saliva, right? Your system becomes active, the minute that you have observed this. 

Robyn: Yes. 

Dr. Javed: Right. So, how is your immune system reacting? In general- in general, the best kind of healing that an immune system can do to itself is when- is in stillness. 

Robyn: Yes. 

Dr. Javed: You know, that's why our inner healing kindness- intelligence asks us to be still when we are sick. When we are in pain, we are still when we are sick, we are still. We are to lay down, right? We don't move around. 

Robyn: Yes, yes.

Dr. Javed: So in stillness, the immune system also can perform at its optimum. And that stillness can be- can be taken as stillness in the physical sense, or stillness in the energetic sense, or stillness as in a psychological sense, you know? So the parasympathetic tone is the optimal condition for the body to heal itself. 

Robyn: Yes. 

Dr. Javed: So- so for example, right, like all immune system conditions, right, they are the- the one medicine that really, really helps a lot of people is steroids. Steroids are nothing but the stress hormone that our body produces during stress. So now, if you think about trauma, stress, illness, steroids, right? Like that is the one biggest medicine that we have in medicine, all medicine. 

Robyn: Yes. 

Dr. Javed: So you see how trauma kind of plays a role in creating some of the optimal conditions for- so it's- so your question is like, very layered. If a parent feels that they are contributing to the world- the child is going through, they will not be in an optimal state for the child to get nurture from- from them, because we can only nurture in a regulated parasympathetic dominant system. 

Robyn: Yes, yes. 

Dr. Javed: So now that is not happening. If they have immune system problems, because of infections or whatnot, they're suddenly worsened. There's- I don't know the exact cause, you know, of- of PANS/PANDAS, or neuro immune conditions, or autoimmune conditions, or immune system gone, not working correctly, there's multiple contributing factors. So you try addressing each of those contributing factors as much as you can. 

Robyn: Yes. 

Dr. Javed: So that trauma work, that interpersonal kind of stuff becomes very important. Along-

Robyn: So regardless of whether this is, you know, a neuro immune condition or not, the trauma healing and the focus, especially, you know, that my listeners, I think you're familiar with is on this, this relational peace, of felt safety peace. That's the parasympathetic ventral vagal, my listeners know it as kind of the owl, the owl brain, the owl pathway, and the metaphor that I use of regard again, regardless, that is- that remains really key both for the parents and the child. And I think my listeners also would say they're real familiar with me talking so much about their- how important it is for us to take care of ourselves and nurture ourselves as the- as adults. Like that- that is treating our children when we pay close attention to our own nervous system state.

Dr. Javed: Yes, absolutely. If we are in that state, we will be able to be better- we will be better able to describe and communicate to the pediatrician that we go to about what are the problems that our child is facing? 

Robyn: Yes, right. 

Dr. Javed: There's a there's a- I forget what it is right? But it's a Zen proverb, or a concept, or which is something like that. Good Anger should be like a lightning strike, right? It- it is intense, focused and then stops immediately, right? 

Robyn: Yes. 

Dr. Javed: When it is achieved its purpose. So- So a good immune system should be like that as well. A regulated nervous system should be like that as well. 

Robyn: Yes.

Dr. Javed: So we are trying to an immune system should know that there is a bug, went after it, and now done, and let's stop, right? Let's not continue going on and anger, or let's not continue going on and dysregulation, or out of balance or-. 

Robyn: Yeah, yeah. So as a practitioner, I mean, so often, folks like me that wear the mental health hat, a play therapist hat, you know? Kid has a behavior problem, let's see about sending them to therapy. And we- it can be really easy, especially for the referring person because it lost sight that schools or people that just don't understand all the nuances, you know? Behavior problem, go to therapy. And I think as mental health practitioners, and I know, lots of folks listen, having some thoughts- or just ideas about when do I need to make sure there's another, like, professional, involved in this? Like- when- like this, sure, this is a behavior problem. But what's the origin of this behavior problem? And do we need something more than play therapy? Like do I need- do I need a medical assessment or an occupational therapists’ assessment? A lot of my kids, you know, really would benefit from occupational therapists’ assessment. And then well in here's, of course, the big kicker is, where do we get that from, you know? If I suspect or even if I happen to know that there is a history of mold exposure, or just something that lends me to suggest like maybe there is something neuroimmune here going on. But I tend to kind of get to a point where it's like, if I've worked with a family long enough, and you know- everything in the system feels quote, unquote, good enough, like in you know, mental health words. It's like, I've got good enough parents here. They're- they're really working hard, they're working on themselves, are offering lots of health safety, this kid has lots of services, but they're still just so dysregulated. That's when I started to say, like, you know, I think we really need now to get another lens, another look. Because if we keep thinking this is all about, you know, how the adults are providing felt safety, or we need to, you know, these parent- your parenting skills are missing this other thing about what's happening in their brain. We're all just gonna continue to anguish here.

Dr. Javed: Absolutely, absolutely. 

Robyn: Yeah.

Dr. Javed: It's- we just increase our level of awareness, right? Like, if something's not working, then we increase the level of awareness, and we address the next thing and level. But most often, the medical piece usually presents as, you know, obsessive compulsive problems.

Robyn: Yes. 

Dr. Javed: And because of those obsessions and compulsions, there's complete dysregulation that happens because of inability to adapt to any changes. 

Robyn: Yeah. 

Dr. Javed: So- and that can present as so many things, neurological kind of things can start happening. Right, like bedwetting is a- is a common one. Sleep problems is another one. Some people actually go into anorexia, meaning they stop eating because they become so obsessed and rigid and fears, some very, very bizarre fears start happening. In which, I mean, some very strange ones, right? Like, so- like, there's- like a child might suddenly, you know, start worrying that they heard their mother cough. So now for the next three nights, they're not going to go to sleep because they have to make sure that the mother does not die. 

Robyn: Yes. 

Dr. Javed: That level of irrationality, sometimes, in their anxiety, right? It's like the complete- lot of anxieties can happen. Like severe anxieties, they can happen. Handwriting's and neurological kind of development that regresses sometimes, right? Like people come in, you see their handwriting before/after, you know, it's- it's significant. So a number a number- of a number of- things, medical things can show up. Along with some very bizarre behaviors. A few people, there's a subset that can have hallucinations even. So.

Robyn: Yeah. And I know it can feel there's this idea of almost like acute onset. I'm curious your thoughts on like, maybe there was something that would have looked like an acute sudden onset like years ago, but the family and the professionals involved, then everybody just called it well, this is part of their trauma. And so it doesn't really feel like acute onset anymore. Like, it doesn't feel sudden. But if we got really curious- you know, if we really looked at when the- you know, the- the symptoms really flared, it does have a little bit of a sudden onset look to it. Would you say that accu- like another way to kind of look at this idea of like sudden onset?

Dr. Javed: Totally, totally. 

Robyn: Okay. 

Dr. Javed: So there's, you know, for some people it can be, it can be one episode, that's very sudden. And that can take a very long time to slowly go away. For some people, it's- it's almost relapsing remitting. Right? So-

Robyn: Yeah, yeah. 

Dr. Javed: -very bad. And things recover. And then there's another relapse. And-.

Robyn: Yeah. 

Dr. Javed: This question of sudden onset change in personality becomes a little bit of a problem. When, let's say, there's a child, who is- who at age two has suddenly regressed. But it's too difficult to see the regression, right? Like, the child cries. And that's the only thing that a child does. And then after four, or five, six months, maybe things are starting to get better. If around that time, there's trauma also in the family system, and the environment system in the, you know, the geopolitical or this social system, right? Like then that- that- that will tend to be put in our blind spots. So there are a lot of blind spots that we can have towards flares or towards relapses. So oftentimes, it becomes a little bit of a chronic kind of a thing. Because of so many relapses. 

Robyn: Yes. 

Dr. Javed: And that changes into, I mean, for some people that changes into the definition of, you know, like stay trade preference personality, and then, you know, becomes a part of the personality. 

Robyn: Yes. 

Dr. Javed: It's-

Robyn: Yeah. Yeah. As you're just saying that, yeah. Like, I just had this moment of like, the gravity of it. The gravity, I mean, yeah, just as you're saying that just really touched into it in that moment. So, for a family, especially a family that doesn't live somewhere like Austin, Texas, has a lot of providers, and I think having lived other places in Austin, Texas, a lot of providers who are willing to kind of be progressive, and think about things in new ways. If a family listening is like wondering, you know, maybe this is something I need to check out for my child, where- where do they even start?

Dr. Javed: It's- it's- it's- it's difficult. You know, because- because the conventional medical model is not extremely geared to providing help for the- the- the family, right? 

Robyn: Yeah. 

Dr. Javed: Evaluation on a larger scope. So I think the biggest- the first place that it starts off is with the child. Is the child healthy, what is going on? So the pediatrician needs to be involved, right? 

Robyn: Yes. 

Dr. Javed: There are a lot of resources for and some of my family members, they give resources to the pediatricians to study up a little bit on- on- on this, for example, if they have questions. So there's a way to be- to- to not trigger the pediatrician or you don’t trigger their defenses to- to cause them to get overwhelmed. And yet at the same time, so, for example, it's called PANDAS Physician Network. They have an extensive resources for clinicians what to do when they see the first child with PANS or PANDAS like, you know. So there's that. And then the biggest thing is like collaboration between the pediatrician, or the primary care physician, and the other team members like for example, a mental health person like a psychiatrist or a another person like a neurologist, especially if neurological symptoms are present. If a developmental pediatrician needs to be involved, then then you know, having the- having that person pulled in. If an immunologist needs to be involved, or rheumatologist needs to be involved then, you know, how do you create a team and among that- in that part of the team is like a therapist, right? Like part of that team is for the parents of the child who have to- who have to heal as well. 

Robyn: Yes.

Dr. Javed: I mean, the child is, you know, and I've seen this again and again, people neglect themselves to take care of their child, which is what any parent would do. But at a certain point, then it becomes counter productive. 

Robyn: Right,

Dr. Javed: You know, so- so then there's this village that needs to be formed around- around the child that is struggling, you know, in anything, let alone neuroimmune kind of stuff, right? And this village needs to be- needs to be coordinated. they need to be able to have a conversation with each other. There needs to be collaboration. And it is- it is something that is our- our conventional medical model is not very conducive for this. You know, of- like physicians, nurse practitioners, therapists are all people who provide care. You know, they're- they’re- they're overworked. They have difficulty taking care of themselves. They have difficulty being curious or being in the beginner's mind. They have difficulty meeting people where they are, they have difficulty communicating to other people, they're not feeling isolated. They have difficulty with other- people that come to them, right. Like the patients, the children, they get similar kind of passing on of this dissociated trauma that people are going through, right? So now they have it, they don't- they neglect themselves, and they're trying to take care of a child. And they forget themselves. And then. So it's a- it's a- it's a- it's a village approach that that works best.

Dr. Javed: Yes, I think that will just be so validating for folks to hear. Because when we're- when we find ourselves doing things that look a little bit outside the norm, there can be this feeling of like, I must be doing something terribly wrong. So I think just really, for everyone listening to hear that, like, this is a very complex medical issue that- and complex medical issues require complex, you know, approaches, and that is going to involve more than just a trip to the pediatrician's office. That there will be other practitioners involved. And it's going to depend on the, you know, the uniqueness of this specific situation. So many parents, I know, I'm sure this is true for you, too, that they are the ones who end up kind of playing this, like case manager role, right? The role of somebody who's trying to put all these different pieces together into just one cohesive, you know, understanding of their child and- and treatment planning.

Dr. Javed: Oh my gosh, yes! You know, some of the- I mean, it is amazing and so inspiring, right? Like when a parent who has not had any medical training, who's pulling up their chart, critical after research article, and, and they have, like, all of the stuff that they've done, and they're literally running the- I mean, they've taken over the care, right? That's-

Robyn: Yeah.

Dr. Javed: It's great, it's inspiring, but they have to either their dad or their parent who enjoys their child has the right to be that. Yeah, there has to be a balance there.

Robyn: Yeah, it’s so awesome to even hear you recognize that. I talk a lot about it with parents. It’s like, there's- there's just so much grief underneath all of this. And the- just like, you mentioned this, like, am I my child's case manager? Am I managing their care? Or am I a parent who's delighting in my child and, you know, in all the losses and when we look to it at other families that we might call more neurotypical and see what their lives look like and how that can, you know, just really compound this sense of isolation and- and loneliness and becomes traumatic for the parents than themselves.

Dr. Javed: Yes, absolutely. Absolutely. It's a very traumatizing illness.

Robyn: Yes. Yes. In so many different ways, not to mention the idea that we're going to 12 practitioners that come before finally, you know, like when I have my therapist had I think how the devastation of being so unseen for so long. 

Dr. Javed: That is so beautifully said.

Robyn: Yeah. 

Dr. Javed: Unseen and then seen in the judgmental light. 

Robyn: Yes. Yeah, chronicity of the mis- like being misunderstood, not seen. And even- I even to hear you talk about professional, you know, or parents who come in with their journal articles. And I know that even that can get judged in the professional community of-

Dr. Javed: Totally. Totally.

Robyn: Yeah, it’s so easy to- yeah.

Dr. Javed: Totally. And that is- is one of those things that we need. That we need therapists who can- who can work with families on how to approach these systems of care? 

Robyn: Yeah, right. 

Dr. Javed: And so a therapist that is well versed in trauma or. Because if you- if you think about it, right, like the biggest challenge that a traumatized person experiences is the inability to communicate their pain. They’re shouting and we’ll stop hearing them because they're shouting from pain. Or they don't talk about it, and they can't talk about it because they're dissociated. 

Robyn: Right. 

Dr. Javed: So same thing, right? Like, when a traumatized person, and you we could take it not only from neuro immune conditions, but even in general, right? Like, when I go to my physician, and I try to communicate things, and I'm in pain, right? My communication will be off. 

Robyn: Yes. Yes. 

Dr. Javed: So it's a- yeah. I'm really grateful that you're bringing in such, you know, layers to this- to this- to this- to this problem. It is a very nuanced kind of thing.

Robyn: It is really nuanced. And I think I find myself in the middle of these families that are already like, moment to moment, right? Like, their lives are just so full of chaos. And you expect them then to be reading medical journals, and- and then to communicate in a regulated way. Right, that like, of course, they're going into their health providers and acting in ways that we could easily judge. Like, of course, they’re- they're behaving that way. And we've essentially backed them all into this proverbial corner, and we've got, you know, just hurting, hurting people. And as I've learned so much more about these- these neuroimmune conditions, and how devastating they are to the person. To feel so out of control of your own body, and experience, and behaviors is another layer of trauma for the person who's experiencing these conditions.

Dr. Javed: Absolutely. That is so- that is so well said. Absolutely. It is- it is- it is very, I mean, you know, one of the things with trauma is the- is our- is our lack of ability to trust our own protective mechanisms. Yes. Because it sets up- it sets us up for more trauma. 

Robyn: Yes. 

Dr. Javed: And if I cannot do something in this world, or if I don't have the ability, or control over my faculties, over my body, over my over making something achieving something, then I will be a sitting duck to more trauma, right?

Robyn: Yep. 

Dr. Javed: So that safety is absolutely not there. 

Robyn: Yeah. Well, this has just been a lovely afternoon for me, a lovely conversation. I just the- the opportunity. I love podcasting, for so many reasons, it gets me the opportunity to chat with really neat people that we otherwise might not carve this time out for. So I'm so grateful for that. And then also, to think about all the people who are gonna get to listen and hear this. And my number one goal with podcasting is, you know, can I give people a little micro moments of being seen? You know, like, what- how has this conversation helped somebody experience like, “I- I'm not the crazy one here”. Like I hear people say that all the time. And I try not to use the word crazy. But that's what people are saying, right? Like, oh, I'm not the crazy one here. Like what I'm feeling, other people are talking about it. That must mean, you know it- there's a language we can put to it. I'm not alone. I'm not making that up. And I think that that is so powerful. And so, just to thank you for being with me here today. And, you know, giving folks,- you know, folks who don't have access to other resources, like for some people, this is what they have, is listening to this podcast every week. And I believe in the power of that the power of these just like little moments where people can feel to seen and not alone. And also to know that there are professionals out there who work our tails off to make progress. And I have had people tell me that just that matters to them. Like I can't find anybody to help me but just knowing that there are people out there like you who are doing this really hard, hard work. How that kind of leads in their nervous system. And I really believe that matters and it’s powerful. So thank you for being one of those people who's doing hard work for people who need help. So thank you

Dr. Javed: Yeah, well, I also enjoyed our conversation a lot. And I really liked what you said about micro moments, right? Like, that was not the word that you used- used. What did you say?

Robyn: I think I did maybe say micro moments.

[overlapping conversation

Dr. Javed: Yeah, yeah. So thank you for creating those micro moments.

Robyn: Yeah. Yeah, it's an- it's an honor. And so, again, thanks for your time. I know you're so busy. I just appreciate it so, so much. And I will let folks know like in the podcast stuff, everybody listening, you know, you can go to the shownotes. You can go to my website to see and learn more, we'll put some, like just neuroimmune resources into this week's show notes. But also, we'll let people know where they can learn more about your practice and the work- the work that you're doing, because it's- it's really remarkable. So thank you.

Dr. Javed: Absolutely. Thank you very much. It was very nice to be here. Thanks.