386. PANS and PANDAS explained: Why some children develop sudden OCD, anxiety, or tics after illness with Dr. Nancy O’Hara

Dr. Nancy O’Hara (00:00):

Genetics loads the gun, environment pulls the trigger. And so it’s not every kid that gets a strep infection that’s going to get PANDAS. The literature is mainly one in 200. We now think it’s more like one in a hundred, but you have to genetically be susceptible. And we’re still working out all the genetics of all of this, but be susceptible to having this misdirected immune response to get PANS or PANDAS.

Dr. Sarah Bren (00:34):

Some parents describe a moment where their child seems to change almost overnight. Suddenly, they develop intense anxiety, new or worsening OCD symptoms, emotional outbursts, sleep disruption, or behaviors that don’t seem to match who they were just days before. In some cases, these sudden changes can be explained by the onset of conditions called PANS or PANDAS. Knowing this is a possibility is important for all parents to understand. While this may never happen to your child, if it does, recognizing the signs and knowing what to look for can make a really meaningful difference in how quickly your child receives appropriate care and begins to improve. Hi, I’m Dr. Sarah Bren. I’m a clinical psychologist and mom of two and the host of Securely Attached. In this podcast, I’m joined each week by leaders in the field of medicine, psychology, psychiatry, and child development, and together we translate the science and research into easy to understand and actionable parenting insights.

(01:34):

And this week, I’m joined by Dr. Nancy O’Hara, a pediatrician and leading expert in PANS and PANDAS. Dr. O’Hara brings decades of clinical experience and a deeply compassionate and integrative lens for understanding how the immune system, brain inflammation and emotional regulation intersect in children. In this conversation, we talk about PANS and PANDAS, what these diagnoses actually are, why they’re so often missed or misunderstood, and how symptoms like anxiety, OCD, ticks, rage, regression, or sleep disturbances can emerge abruptly and feel really terrifying for families. We also explore how to assess whether a child’s symptoms may be part of a broader immune response, what effective treatment really looks like, and why therapy remains an essential part of healing, even when symptoms have a medical origin. And most importantly, we talk about hope, why it’s never too late to identify what’s really going on and how children and families can recover with the right supports in place.

(02:45):

Hi, Dr. Nancy O’Hara. Thank you so much for coming on the show.

Dr. Nancy O’Hara (02:49):

It’s really lovely to be here and thanks for inviting me.

Dr. Sarah Bren (02:52):

Yes. I’m really excited about this episode because I’m like, I want to learn. I want to be a student of yours today. You specialize in something that is very not well understood by my medical science, by the general population. I’m always amazed that people have never heard of it, but I would love to hear a little bit about how you came to be a specialist in this very sort of nuanced diagnostic area of PANS and PANDAS.

Dr. Nancy O’Hara (03:32):

Yeah. Yeah. Well, first, let me say my mentor, Dr. Sydney Baker, who is one of the grandfathers of functional medicine, was who got me started with all of this. And one of the quotes that he always uses is, “Follow those who seek the truth, but flee from those who have found it. ” And I think that encompasses my whole life because as a doctor, I really want to be a detective and figuring out the root causes of problems. So I got started in all of this because of my own infertility. I was a card caring, regular old pediatrician, no offense to regular old pediatricians, but I was in primary care going through five years of infertility and I had a child change with diet, change behavior, change her mental illness, so to speak. And she came to me and said, “You have to meet this guy. You have to meet Dr. Sydney Baker.”

(04:30):

And I thought, diet change behavior. That’s like crazy. But I went to him as a patient and that changed my life. I thankfully, now almost 30 years ago, got pregnant with my son and changed my practice to what I call an integrative consultative root cause practice, looking for what are the things in the environment infectiously, metabolically that can affect all of our kids with neurodevelopmental or neuropsychiatric illnesses. So it started with autism 30 years ago. And by the way, I was a teacher before I went to medical school and being a doctor is a heck of a lot easier than being a teacher. So I have tremendous love for everybody in education. And I went to medical school to be a psychiatrist. So I have tremendous love for all psychiatrists, psychologists, but I have a calling in that way.

(05:26):

So this way of thinking about things really sat well with me. Anyway, fast forward, I now have a very neurotypical nine-year-old son who in a week went from being fine to having seizure-like ticks, anxiety, and OCD. And it happened after he got strep throat, got bit by a Lyme positive tick and had a viral infection. And that’s when I learned about PANS and PANDAS. So the PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with strep. So basically after a child gets a strep infection, and it can be a few days to really up to three months later, they can develop symptoms that are usually OCD of any sort, intrusive thoughts included, anxiety, ticks, and somatic symptoms. And what I mean by that is abrupt onset of bedwetting or urinary frequency or restless sleep, what we call REM disinhibition, that inability to get into that deep REM restorative sleep. And all of this to be this diagnosis has to be of abrupt onset.

(06:45):

And I can hear people saying, “Well, what if my child was more subacute?” Well, there are other things that can cause that, but to be PANDAS, it has to be after a strep infection and be of abrupt onset. And this was all discovered and the acronym was labeled by Dr. Sue Swedo and others in the 1990s. In talking to Sue, she wishes she had kept the name autoimmune encephalitis of the basal ganglia associated with streptococcal infections, because that’s not a mouthful, but I wish she had called it the Sweeto disease, but just calling it something like PANDAS, which is a rather kitchy title, I think has in some ways made it more controversial. The other thing that’s made it controversial is I just said, you can get this two days to three months after a strep infection. And what’s also very interesting is that often the kids never have a throat symptom.

(07:49):

They don’t have a fever, they don’t have a sore throat, they just have a behavioral downfall, but they had a contact or a sibling with strep. Why is that? Well, what this really is, is a misdirected immune response. So it’s not an infectious disorder, it’s an autoimmune disorder where the immune system, rather than sending the antibodies or the proteins to the throat to fight the strep infection or anywhere where the strep infection may be, those antibodies instead cross the blood brain barrier and attack cause inflammation in the basal ganglia. And the basal ganglia is that area of the brain that’s responsible for all the motor stuff, the anxiety stuff, the OCD, so much of it. So when those antibodies cross the blood-brain barrier and attack that area, you get those symptoms.

Dr. Sarah Bren (08:50):

Got it. So it’s almost like the wires got crossed instead of sending the soldiers to fight the strep infection, which would result in the symptoms we typically associate with strep in a child. The soldiers, they took a wrong turn and they ended up in the wrong spot, but the result is they’re fighting strep, but not where the strep is.

Dr. Nancy O’Hara (09:12):

Exactly.

Dr. Sarah Bren (09:13):

And the resulting behaviors and symptoms we see look very confusing and can be missed because in my world, because as a psychologist, my entry point for families dealing with this usually is, my kid has OCD, my kid has anxiety, or my kid is having these confounding, regressive behaviors that we can’t … Like all the things you described, like all of a sudden they’re wetting the bed or they’re having accidents at school or they’re really, really irritable or explosive and it’s unclear and their sleep is really broken up and they’re kind of like on fire all the time.

Dr. Nancy O’Hara (09:50):

Yep. And that’s what they are. It’s brain on fire.

Dr. Sarah Bren (09:54):

Yeah. And so for me, it’s usually like I’m reverse engineering that presentation to be like, hmm, have you gotten sick recently? But again, to your point, which is I think why it makes it from a … I know we have a lot of parents listening, but I also know we have a lot of clinicians and therapists listening. So I’m speaking to like both of you all in the audience right now, but like to my therapist people, I feel like it can be very … We can ask a family, like have they been sick recently? And to what you were just saying is like, the parents may genuinely not have registered the sickness. So they might say, no, I don’t think so.

Dr. Nancy O’Hara (10:34):

Right, right. And I think the big thing is that I’d like to impart to all therapists, all parents, all doctors, any practitioners, people out there, is if you hear about these symptoms, dig a little deeper and see if it was of abrupt onset. If the parent can say, “On February 12th, my kid was fine, but by February 15th, they were a totally different kid.” That’s somebody you should be digging deeper to figure out was there a previous cause, a previous infection. And the first thing I recommend is getting a strep culture. Because if it was like let’s say this happened, they say the kid was fine over the winter holidays, January 1st, everything was great. January 8th, this happened and now you’re seeing them today on February 4th. You could still get a strep culture and it could still be positive. Now, if you’re seeing them today, and this all started two years ago, but they remember it started abruptly then.

(11:41):

Again, it may still be this disease and it’s identifying it appropriately that’s important. And the other big thing besides the name that makes it controversial is it is a clinical diagnosis. If you now go and what my next question I always get is, “Well, what blood test do I do? What do I do to prove this? ” And often the blood tests are totally normal and why is that? Well, 40% of kids will have concomitant or together with all of this an immunodeficiency. So they can’t mount an immune response that shows up as what we call a strep titer in the blood. That may look totally normal. They may though have evidence of inflammation. So in my book and in the trainings that I do, I provide all the regular blood work I would get, but I say over and over again, it may be confirmed or not by these blood tests.

(12:45):

It really is being that detective. And by the way, as a Nancy, as a child, my big thing was Nancy Drew books, and I really wanted to be a detective as a little girl, but I’m scared of the dark. So being a doctor was the better detective way to go. But anyway, and PANDAS is just strep, but I do want to say that in 2012, Sue and 30 other clinicians and researchers got together to try to make this diagnosis less controversial. And what they did was they included in the moniker all other infections. So we’ve seen this after COVID, we’ve seen this after other viruses, we’ve seen it after mycoplasma, we’ve seen it after chickborne diseases.

(13:28):

And that’s the PANSs distinguisher. So PANDAS, it’s specific to this post-strep.

(13:37):

Strep. Exactly.

Dr. Sarah Bren (13:38):

PANS is more kind of broad stroke, autoimmune response.

Dr. Nancy O’Hara (13:42):

Exactly.

Dr. Sarah Bren (13:43):

The soldiers went to the wrong part of the body.

Dr. Nancy O’Hara (13:45):

Exactly. And a typical one there is grandpa’s in the hospital with mycoplasma pneumonia and the kid devolves into OCD. I had a family of three and one of the children while grandpa was in the hospital started hoarding all of a sudden and started having very intrusive thoughts. When I got the history that grandpa was in the hospital for mycoplasma pneumonia, did mycoplasma testing on the child, it was positive, put her on an appropriate antibiotic, some immune support, helped to treat her symptoms. I mean, I have to say, I’ve kicked people out of my practice who don’t do therapy. So I think that the therapeutic arm of this is so important.

Dr. Sarah Bren (14:27):

That’s an interesting thing because I do think a lot of people will say, and I think it’s helpful to think about, okay, first of all, how do I identify it? How do we understand the differential, which means what else could it be that we have to rule out?

(14:40):

And I have some questions for you about that, that I’ll come back to. So let’s say we’ve identified it and we’re confident that we know what it is. The treatment, I think, if I’m not mistaken, yes, you still might want to, if there’s an active strep infection or some other sort of viral load in the system that you would want to treat that, but the symptoms of OCD or other sort of psychological or behavioral or somatic symptoms that are going to be present from this actually may still remain and we need to treat that and the treatment would be somewhat typical to how we would treat it if it wasn’t induced by the autoimmune response. Exactly. Is that correct? We would still treat the symptoms the same way in therapy that we would treat a kid who just kind of organically has OCD.

Dr. Nancy O’Hara (15:30):

Yep. And a couple caveats to that. Sometimes the initial presentation of this is so severe, the child can’t access therapy. They can’t access even CBT, DBT, any of that. But I highly recommend that the parents initiate therapy, like if a therapist feels comfortable working with the family, because one of the things that often happens is I see families feeding the beast of this disease. “Oh, I’ve got to coddle this child, they can’t do their chores, they can’t go to school, they can’t do their homework. And I got to tell you, when we were in the midst of this with my son, I pick him up by his bootstraps looking like he was having the seizure, the ticks were so bad and we’re going to do your homework, you’re going to go out and do your chores and now he’s getting his PhD. And I think that part of not feeding the beast of this disease is also very important for families to remember.

(16:31):

I think a lot of people who learn about Pans and Pandas are just rushing out to get an antibiotic and thinking that’s going to cure everything. So number one, if it’s caused by a virus or a yeast infection or a tickborne disease that’s not covered by that antibiotic, you may choose the wrong antibiotic, but that’s only part of it. It should be a three-pronged approach. Treating the underlying trigger, which may be an antibiotic or another antimicrobial, treating the immune system abnormality, so decreasing the inflammation, and I’d like to talk about that a little bit more, but the third is treating the symptoms. And for me, that always involves therapy, and they involved other nutraceuticals or low dose medications depending on the severity. And by the way, these kids do much better on low dose medications, starting a very low dose of an SSRI.

Dr. Sarah Bren (17:33):

That would be my question, because I think, and I’m very curious about sort of the Dr. O’Hara side of like, okay, so we’re going to treat the underlying source, we’re going to treat the subsequent inflammation. That’s sort of the medical piece. My wheelhouse is more in the clinical piece, and I will echo 100% what you just said, which is how we treat any anxiety and OCD is really first about meeting the kid and the family where they’re at.

(18:04):

So if the child is so acutely symptomatic that they cannot tolerate therapy, then we definitely start with the parents. And frankly, I start with the parents kind of anyway, because I really think that I take a sort of systemic approach. I really relate to your sort of functional medicine lens because I think our practice really focuses on the family system, even if the child is the patient, right? The child has the symptoms, but like you said, the family constellation, especially with children, you can’t disentangle it. So when your child is having intense intrusive thoughts and panics and is panicking and is soliciting you to rescue them from their worries and their anxieties, and we’re getting roped into accommodating a lot of the ritualistic, compulsive behaviors that come with it, we can inadvertently be maintaining it because we’re actually responding to our child’s worry brain, not the child.

(19:02):

And so there’s tons of resources. I’ll link in the show notes for anyone who’s listening. Some of the episodes we’ve done in the past where we talk about space, which is supportive parenting for anxious childhood emotions, which is an incredible treatment protocol out of the Yale Childhood Study Center. And that I think is a great entry point. I’ve definitely done space with families of kids who are having like an acute PANDAS episode, aren’t ready to do therapy themselves, but we can really help the parents, like you said, you say not feed the beast. I say like, don’t juggle the balls. Your kids’ anxieties, if you think of them as like balls, your child is juggling, juggling, juggling them, and then they’re throwing them to you and you’re throwing them back and it’s like everybody’s throwing balls everywhere. For the parents, what I think space does that’s very helpful is it helps the parent build skills and emotional tolerance for putting the ball down and saying, “Ah, you’re feeling really anxious right now.

(19:59):

I’m not going to hold this ball right now. I’m here for you, but I’m not going to keep throwing these balls, AKA symptoms or accommodation requests back and forth with you. ” Exactly. Sometimes we can’t, the kid isn’t ready to put the balls down, but if the parents can put the balls down first, then it helps the child just be juggling the balls on their own. And then when the kid’s ready and we could do therapy to help the kid put the balls down, the parents are not kind of like enmeshed in that whole process. It’s like working from the outside in a little bit.

Dr. Nancy O’Hara (20:34):

Yeah. And sometimes for parents that are in the throes of this, it’s just taking a deep breath. It’s modeling that relaxation of their limbic system, that relaxation of the fight, flight, freeze that their kid is going through. But if we as parents are feeling the same tightness or throwing that ball back, we’re not going to be able to help the situation. And one other piece of that in the ball analogy is sometimes as you’re throwing those balls back and forth, you hit the other kids in the head with the ball and they suffer a lot and that has to be acknowledged too.

Dr. Sarah Bren (21:21):

You just heard me talk about the work that we do at my group practice, Upshur Bren Psychology Group, particularly our use of the SPACE treatment protocol. So whether your child’s symptoms are a result of PANS or PANDAS or not, this kind of parent-led approach can be incredibly impactful for families navigating the challenges of childhood anxiety and OCD. So many parents come to us feeling overwhelmed and unsure what to do next. SPACE helps you slow things down, make sense of what’s happening, and walks you step by step through changes that are both effective and sustainable for your family. At Upshur Bren Psychology Group, we offer a couple different options for getting started with space. Our four week virtual space group helps parents nationwide build a clear individualized roadmap. Together, we help you identify which behaviors to start or stop, decide when and how to roll out these changes, and offer strategies that you can use to support your child as they build distress tolerance and resilience without burning yourself out in the process.

(22:24):

For parents who want a more personalized level of support, we also offer one-on-one space sessions for families in New York State and Connecticut. This option allows parents to work closely with a therapist to tailor the approach to your child, your family system, and your specific challenges with ongoing guidance as you learn, adjust, and implement these principles in real time. As Dr. Eli Liebowitz, the creator of the space treatment modality, shared with me when I interviewed him on Securely Attached, childhood anxiety is one of the most treatable conditions in the field of mental health. The work that you can do now can create lasting change that benefits your child across their entire lifetime. So if you’re interested in joining the wait list for our next space group or getting one-on-one support, you can visit upshurbren.com/space. That’s U-P-S-H-U-R-B-R-E-N.com/SPACE. Or if you want help determining what support options are best for your unique family’s needs, you can also schedule a free 30 minute consultation call with a member of our care team who will listen carefully to your concerns and walk you through personalized recommendations so you don’t have to figure this out on your own. All right, now back to my conversation with Dr. Nancy O’Hara.

Dr. Nancy O’Hara (23:47):

One of my colleagues, Dr. Lindsay Wells, wrote a children’s book on all of this called Super Sam and the Fight Against PANS/PANDAS or something like that, but Super Sam. And it’s a great … I always say it’s a nice way to teach doctors, MDs about this disease. It’s understandable for them. Most of the moms on this call probably are way beyond that, but it really helps and it helps the other siblings to understand one, this isn’t their sibling. Their siblings not trying to hurt them, yell, make their lives miserable. This is … A lot of my kids that are going through this rename that part of themselves that acts like this. Cheeky did that.

Dr. Sarah Bren (24:33):

We personify the worry brain or the OCD brain or the PANDA’s brain so we can- And it helps. It helps the child feel like there’s a separateness and also not over-identify it with it, but also be able to differentiate is the intrusive thought coming from me or is it coming from my panda brain? And then they can then, in creating that distance, it also helps kids learn strategies for bossing it back or let’s make it goofy. One thing I will do with kids when I have them personify their worry brain, a lot of times kids will like, they get it right away, this idea. It just comes so … They’re just so open to it and get it right away, but you’ll usually describe it. I’ll be like, “Okay, so what do they look like? We’ll draw pictures of it or Nate give it a name.” And it’s usually big and it’s usually scary. And so one of the things I will always do is I will say like, “If we were to like … ” And I use, I don’t know if you know Harry Potter, but…

Dr. Nancy O’Hara (25:34):

Oh yeah.

Dr. Sarah Bren (25:35):

Yes. So there’s this incredible scene in, I think it’s the third movie or the third book where Harry is learning to like fight off the Bogart and the way that you fight a bogger, the bogert shows itself as your worst fear and the spell to defeat the bogger is you have to think of something kind of ridiculous about that you put that fear into some sort of ridiculous idea in your head and then you say ridiculous. And so a lot of times I’ll like use that with kids or if kids aren’t familiar with Harry Potter, I’ll kind of just invent a little story of the version of that. But like how do we give this scary monster worry brain or panda’s brain or whatever? How do we give it a ridiculous curse and how do we make it small and goofy and not so scary? Can we give it a really squeaky voice or can we make it like be dressed up in a funny little outfit that doesn’t fit it right? And like how do we like discharge some of the potency of this voice?

Dr. Nancy O’Hara (26:38):

And it’s why I named my book Demystifying. It was actually my stepson who came up with that word, but this is all so mystical, especially for the dads by the way and doing this, and by the way, when my son was going through this, Harry Potter was just coming out. That’s how long ago this was and Dabi was our little Dobby’s back and Dobby would be in the corner and, okay, what’s David doing? It was sort of that sort of thing. But anyway, I think that using the visualization really helps the kid, but I also think it really helps the dads who sometimes are not, and I don’t mean to make this sexist or gender specific or anything, but the parent that is not living it on the front line sometimes just thinks or the teacher or somebody else that it’s bad behavior and giving the visualized part of this helps everybody in the family unit, grandparents and others to really see it better too.

Dr. Sarah Bren (27:48):

Yeah. I think it helps us have more empathy and compassion and see our kid as struggling against this force inside their mind. And I also think it really helps the kid to have language for it because upon that language builds other skills, right? Like if you can visualize it, then you can make it less threatening, then you can boss it back, you can ask it to sit down in the corner and wait, it’s turn to talk. It gives the kid more space inside their mind to like, “Oh, I’m in here and this worry mind is in here.

(28:20):

But I can have a conversation with it versus it’s like, it’s me, it’s everywhere, it’s all at once.” It’s hard. So those are just some strategies for like how we might treat the anxiety or the OCD in the therapeutic realm, but I’m really curious to hear from you like, what is some of the ways that the medical piece can treat it and do you find that in treating the medical piece, the psychiatric symptoms go away or is it there forever? Absolutely. I imagine there’s like a sort of a trajectory of this with appropriate treatment. I’m curious if you could paint that picture.

Dr. Nancy O’Hara (29:01):

Right. And why I spend so much time teaching and mentoring is because the earlier you can diagnose it, the better the outcome. So in a child where you notice it right away, the first thing I tell people to do when the child is having a flare of symptoms medically is to give ibuprofen 10 milligrams per kilogram because if that decreases the severity, intensity or frequency of the flare, that intensity of the psychiatric symptoms that we’re seeing or the urinary symptoms or the sleep symptoms, that tells you that there’s an immune or inflammatory component to it. So that’s something very simple, but it does need to be an effective dose, which is 10 milligrams per kilogram. So for a 40 pound kid, that’s 200 milligrams, so that’s number one.

Dr. Sarah Bren (29:54):

And how long would you take that dose?

Dr. Nancy O’Hara (29:57):

If they do it once and they see it happen, then Then they should try to find a medical professional that can further treat that.

Dr. Sarah Bren (30:02):

Got it, so it’s almost like a test.

Dr. Nancy O’Hara (30:04):

It’s a diagnostic trial.

Dr. Sarah Bren (30:05):

Exactly. Okay.

Dr. Nancy O’Hara (30:06):

Yeah. And then you could use it therapeutically. Most people are not going to get in the next day to see somebody. And unfortunately for somebody like me, it may be two years. So don’t wait to see me. But you can continue it twice a day for a couple of weeks if you need to while you’re waiting to find somebody that can help figure out what the underlying problem may be.

(30:33):

Then what I recommend doing is figuring out diagnostically, did this happen after COVID in the family? Did this happen, like I said, after mycoplasma or could it have been strep? And because the strep especially can be diagnosed by a throat culture, if it is an abrupt onset, get that and treat it with an antibiotic. But then the other thing in addition to treating the symptoms, either with an SSRI at low dose therapy, is also there are several other things nutraceutically that I find very helpful. For instance, turmeric is a wonderful spice, but it’s also a very good anti-inflammatory and there’s good research that it helps to decrease anxiety. So I may use that in a child. There is good research that very low doses of a nutraceutical like lithium oritate may decrease OCD. So I look at what are the biggest symptoms? Nobody in the family is sleeping.

(31:38):

Well, then I want to give something to help everybody sleep, whether it’s melatonin or valerian or a gummy that has, not that kind of gummy, but a gummy that has … I always get there. Anyway, get everybody sleeping. If the child has tics, one of the best interventions for ticks is magnesium. There’s great research on that. If it’s OCD and anxiety, it may be an acetylcysteine. There’s 17 studies that show that it decreases that. So in children, I at least try to use some of these nutraceuticals to see if I can decrease the symptoms while we’re also pursuing therapy, while we’re also getting some blood work or trialing an antimicrobial, et cetera.

Dr. Sarah Bren (32:30):

Yeah. And would you recommend … You are full, but I’m curious, if parents are hearing this and they’re like, “Okay, I want to try some of these things.”

Dr. Nancy O’Hara (32:43):

Yeah.

Dr. Sarah Bren (32:43):

Do you recommend them partnering with their pediatrician or with a specialist? Who should people go to to support this treatment plan?

Dr. Nancy O’Hara (32:53):

Right. I would absolutely recommend they go to their pediatrician. However, because of all the things I said in the controversial aspects of it, some pediatricians do not believe in PANDAS. And unfortunately, our governing body, which is the American Academy of Pediatrics in December of 2024, finally came out and said, “PANDAS exists.” But then they said, “There’s nothing you can do about it, ” which is absolutely false. And their data was based on all articles prior to 2017. So there’s a lot of politics and information that I could go on about for the next hour. Not important, but the point I’m making is that many pediatricians will use that to say, “Yeah, it may be that, but there’s nothing you can do, so I’m not going to address it. ” If that’s the case…

Dr. Sarah Bren (33:49):

Yeah, I was going to say are there certain indications that someone could look for in their questions they can ask their medical provider or even directories or resources where people can find people who are trained in this.

Dr. Nancy O’Hara (34:03):

Exactly. So great websites are aspire.care. That’s a wonderful website for families dealing with this. Talks about how to deal with schools, how to find therapists, has a practitioner directory. There’s another one in New England called The Look Foundation. And both of those organizations also provide communities, online support groups, families that have been through this to help parents find practitioners, find interventions, get the care that they need. So those are two great organizations. If you are a practitioner, there is the PANDAS Physician Network, PPN, that is very good. And there are several listservs that we are all on that every day others in the field and I answer to try to help people navigate this very difficult road. And there are a lot of practitioners in our area and across the country that are very well trained. And I recommend to parents to take either the 2017 Journal of Child and Adolescent Psychiatry, which is a whole listing.

(35:23):

The February 2017 was all about Pans and PANDAS or Scott Antoine’s book, which is a very well written comprehensive guide to PANS and PANDAS or my book, which I tried to make it a little bit more for families, a lot of case studies and things like that. So if you’re taking it to your pediatrician, you may want to get Scott’s book. It looks a little more formal or tell them to reach out to me. I set up 15 minute calls with practitioners all the time to try to help them for free, to try to help them know how to test for and initially possibly treat while the child may be waiting for a practitioner that has a three month waiting list or something like that.

Dr. Sarah Bren (36:12):

Wow. That is an incredible resource that you offer.

Dr. Nancy O’Hara (36:15):

Well, I was trained by an amazing man, Dr. Sydney Baker, and both of my parents were physicians and my mom, Salt of the Earth would do this for anybody. And I think it’s in my DNA, both as a parent who’s been through it and as a physician who sees it, we just need more of us. We just need people to get this and to stop saying, “There’s nothing you can do because there is so much you can do. You just have to be willing to look.”

Dr. Sarah Bren (36:48):

Yeah. I have another question because I’ve seen kids who … It was an acute onset of an increased acuity of the symptoms, but they had anxiety or OCD kind of before what we then identified as like a strep infection. So I would imagine it’s still the same thing, right? It’s like if you have a system that’s already sensitive to kind of showing up with these … Because OCD, and I’m curious if this is … I’m getting on a tangent, but the way I understand, anxiety is like a bit of a spectrum, but when you are dealing with OCD, we’re really not actually talking about an anxiety disorder in the classical sense. We’re talking about a neurological condition.

Dr. Nancy O’Hara (37:37):

Exactly.

Dr. Sarah Bren (37:38):

And so if you have a brain that’s already kind of predisposed to this particular presentation, these particular vulnerabilities that can show up as OCD, and you get strep, and then you get PANDAS. Is that a scenario where you’re just going to see a stronger blast- Absolutely. OCD, but it’s not a rule out, right? If the kid already had OCD before and we know that there was an infection or some sickness that happened, we could still consider this PANDAS.

Dr. Nancy O’Hara (38:13):

Absolutely. And I wrote an article on this first fire in children with autism, because think about those kids. They’re perseverating, have OCD, that’s part of their lives for many of them, and then they get a big spike in that. Those kids should still be looked at, the kids that have underlying OCD, but there’s a big spike. It’s an abrupt onset or recurrence of severe OCD. And two other things I want to say, one of the symptoms that I did not mention was an OCD related restrictive eating disorder, and that can be very severe. And that’s an abrupt onset of you’re afraid of contamination of food. You’re afraid of choking on food. You all of a sudden can only eat a certain texture of food. Again, in that autism analogy, they may have had texture or food issues, but all of a sudden it changes. We should at least be looking for this.

(39:13):

It’s not going to be in everybody. And as we sort of alluded to, there is a differential. And then the second thing I wanted to say is that one of the phrases I also like is genetics loads the gun, environment pulls the trigger. And so it’s not every kid that gets a strep infection that’s going to get PANDAS.

(39:33):

The literature is mainly one in a hundred. One in 200, we now think it’s more like one in a hundred, but you have to genetically be susceptible and we’re still working out all the genetics of all of this, but be susceptible to having this misdirected immune response to get pans or PANDAS. So I did also want to say that.

Dr. Sarah Bren (39:54):

Yeah. No, because that makes sense. I mean, I’ve had strep, I used to get strep all the time when I was a kid and I never had PANDAs, but if my system was vulnerable to having an autoimmune response that was like misdirected, pointed the soldiers in the wrong direction, then that would have made me more vulnerable to getting it, right? The PANA. I see. That makes sense. And again though, if you have a kid who’s already kind of shows up with some of these symptoms and then either you know they get sick or you’re not sure, but you see the spike, we would still really want to go and make, we’re sure we’re treating the medical piece of it, right?

Dr. Nancy O’Hara (40:36):

Correct.

Dr. Sarah Bren (40:37):

You might still have the psychiatric stuff going on, but now you’ve got two things going on and so we really can’t, we just need to be able to say both are existing at the same time and we have to treat the inflammation and the whatever like viral load or whatever’s happening. Correct.

Dr. Nancy O’Hara (40:54):

Exactly. That’s exactly right. And you may not find it. There may be a spike for all other reasons, but looking for it and finding and treating it can make such a difference in these children’s lives. And I would say that is true because I have such a long waiting list, I see the most complex and drawn out cases and still those kids can get better as long as you appropriately identify the immune system reaction, the underlying cause or causes. Again, this is not an infectious disorder. So I often get people that have more complex presentations saying, “Oh my God, my kid has strep and mycoplasma and viruses and COVID and all of this. He’s so much sicker.” No, no, no, no, no. It’s just that your child’s immune system is misdirected, dysregulated. It’s an immune system reaction, not that they’re sick with all these infections, they’re just not appropriately handling it and that response has caused inflammation in that area of their brain, not just where the infection was.

Dr. Sarah Bren (42:02):

Yeah. And so yeah, what do you see change? And because I’m thinking about, like you were saying, sometimes we don’t catch it right away because again, it can fly under the radar in a bunch of different ways. The symptoms are there, but we might be attributing them to something else or not catching the actual viral piece or the inflammation piece. And so people might actually not for years be grappling with this and finally get the accurate, “Okay, we’re going to hypothesize its PANDAS.” At that point, I would assume the infection part has probably worked its way out of the system, but the immune response is still active. Is that what’s going on? Exactly. You have this immune response could last indefinitely or could it ever go away on its own or do you have to… what makes it last so long after the infection?

Dr. Nancy O’Hara (42:56):

The answer is yes, yes, and yes. But anyway, what happens is that immune dysregulation, immunodeficiency and inflammation can continue because those proteins in the immune system are still elevated, activated, inflamed. And so that’s a big part of what I do. And also, I may well use herbals. Herbal interventions are in the MDO world often felt to be things we shouldn’t even consider, but because I’m more in the functional medicine world and have worked with a lot of naturopaths and others, I have learned about, studied and found that herbals can be very helpful. They also are very good immune supports. So in that kid that comes to me chronically while I’m looking to try to figure out what is this, I may well add herbals and just those herbals decrease the inflammation and by the way, maybe treating some of the underlying infectious response that’s going on. So that may well be something that a lot of practitioners will do and certainly I and anybody I trained would do.

Dr. Sarah Bren (44:22):

How do people get trained by you?

Dr. Nancy O’Hara (44:25):

I have a membership, which we do monthly teachings in that membership. I also provide free training for specific cases. I have videos that are two to five minute longs and longer lectures, and I have experts in the field come and talk on mold or chickborne disease or cerebral folate deficiency or whatever else it may be that may be linked, but whatever. Transdiagnostic. Well, something like that. I was thinking about another word that I keep mispronouncing, so I’m going to forget about it. But anyway, I also have a mentorship. So if a practitioner wants to come to me with a family and have me advise either once or on an ongoing basis, I do that. I have my book and the audio book, which has a lot of information. I too have a podcast, so we’ll have to exchange.

(45:25):

Just to get information out there. And then there are two groups that I think really … Well, three groups that I am part of that I think really provide a lot of training. One is the Medical Academy of Pediatrics and Special Needs, which was developed as an autism community for practitioners, but it’s now all with chronic illness, particularly children, but also young adults. We have a conference coming up in March and then in September. Other group is ILADS, which is the International Lyme and Associated Diseases Society conference coming up in London and then one in the fall. Really training in this area, tickborne disease is another big cause of this that often gets left aside in the classic thinking of PANS, but should be considered where we live in the Northeast for sure. Connecticut is Lyme Central. And then the third is Psychiatry Redefined, which was started by Jim Greenblatt.

(46:24):

And he recently started a pediatric fellowship of which I’m a big part and have 12 lectures and live Q&As that are also recorded, office hours. And in doing that particular fellowship, you get a free membership with me also. So there are lots of ways that the training can happen, and all of that is on my website.

Dr. Sarah Bren (46:50):

That’s fantastic, because I really think, like you said, if the governing bodies that are defining what is and isn’t like a recognized diagnosis are working off of research and the academic work that’s over a decade old, I mean, so much is happening in the last 10 years and currently, as evidenced by all these incredible things you’re listing off, like highly reputable, academic, scientific, this is not woo. No. This is very, very, very rigorous. And I think it says something to the momentum that you’re building in the ability to have this become something that is well known, easily identifiable by clinicians across different modalities and families. Because like you said, it isn’t going to always shout out, “Hey, this is what I am.” It’s covert the way that it presents. So we have to know to look for it and we need to know what to look for, and then we need to know how to intervene as quickly as possible, and that’s going to give the best outcomes.

Dr. Nancy O’Hara (48:09):

Right.

Dr. Sarah Bren (48:10):

But I think that’s very hopeful. If you’re listening and you’re wondering if this might be something that’s going on, like there are resources, even if it’s been years, it’s still not too late to address it.

Dr. Nancy O’Hara (48:22):

Yeah.

Dr. Sarah Bren (48:23):

Even just not like … I mean, obviously I want you to go to therapy because I think it’s great, but …

Dr. Nancy O’Hara (48:29):

I do too.

Dr. Sarah Bren (48:30):

I appreciate that. But we really also really need to layer on the medical piece because this isn’t just an anxiety disorder or a psychiatric illness. And frankly, that sometimes warrants medication too, but this is a very specific sort of biological medical condition and we need to actually treat that piece or we’re just going to be kind of like playing catch up forever. Right.

Dr. Nancy O’Hara (48:55):

And spinning wheels and it is treatable and that is my big message. There is hope and it’s not false hope, but these kids can get better. And there was one little piece I was about to address and didn’t, which is, why is this pediatric? I always get asked, can adults have this? And certainly if it was misdiagnosed or undiagnosed or is tickborne disease or related in that way, it can be in adults, but children have an open cribiform plate. The blood-brain barrier is much leakier, so to speak. That criboform plate, that blood-brain barrier starts to close at puberty. So this is most often found between the ages of three and 13. Can it be later? Absolutely. And there are a lot of toxicities that may not help our blood-brain barrier to close, but it should fully close by the ages between 18 and 25. A lot of great research on that also, but I wanted to mention that because the P is pediatric. So this should be a pediatric abrupt onset diagnosis that can get better with appropriate treatment and understanding.

Dr. Sarah Bren (50:16):

Oh, this is fantastic. Thank you so much, Dr. O’Hara. This is just really illuminating and you’re doing fantastic, important work. So I deeply appreciate you coming on here and sharing it with us.

Dr. Nancy O’Hara (50:29):

No, I appreciate you inviting me. Thanks for all the work you do. And if you’re not in therapy, get in therapy. Big believer and do space because we have to hold space for everybody in the family. And this is a family disease. Any childhood disease becomes a family disease, but-

Dr. Sarah Bren (50:46):

Absolutely.

Dr. Nancy O’Hara (50:47):

Like we said, there is hope.

Dr. Sarah Bren (50:48):

Yes. And we’ll link in show notes, your book, your website, a lot of the … I mean, you just gave us a wealth of resources, so we’ll try to link as many as we can in the show notes so that people can just refer to that to find out all the things you need. Thank you. Thank you so much.

Dr. Nancy O’Hara (51:05):

Thank you.

Dr. Sarah Bren (51:12):

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