When Infection Hijacks The Mind: PANS and PANDAS Explained

Overnight personality changes are every parent’s nightmare, especially when the symptoms don’t fit a neat box. Scott and Stephanie are joined by Gabriella True, President and founding Board Member of Aspire, to explain PANS and PANDAS in plain language and with hard-earned honesty.  Gabriella brings professional advocacy plus lived experience as a mom of twins impacted by PANS and as someone who has dealt with PANS/PANDAS symptoms herself.

We dig into what makes pediatric acute-onset neuropsychiatric syndrome so alarming: sudden OCD, restricted eating, and complex tics that can arrive with severe separation anxiety, rage, urinary changes, and mood swings. We talk about why some kids don’t show “typical” infection signs, how strep and other triggers can set off a neuroimmune response, and why calling these shifts “symptoms” instead of “behavior” can change how families and clinicians respond.

Gabriella also walks us through today’s treatment framework including infectious triggers and reducing inflammation alongside careful psychiatric support.  The conversation doesn’t skip the hardest part: suicide risk, the reality of hospitalization, and the urgent need for coordinated medical and mental health care.

If this helps you put words to what you’re seeing at home, share it with someone who needs it, subscribe for more conversations like this, and leave a review so more families can find these resources when time matters most.

Transcript

Welcome And Why This Matters

SPEAKER_02 0:04

Welcome everyone to this episode of Voices for Suicide Prevention. As we like to say, our conversations are real talk, real honest, real life.

SPEAKER_00 0:13

I'm Scott Light. And I'm Stephanie Booker. Most people have probably never heard of the following acronyms that I'm going to say PANS or PANDAS. Today we're going to sit down with a mom, advocate, and expert to uncover the real impact of these disorders. Gabriella True is president and founding board member of Aspire. It's an organization dedicated to supporting children and adults affected by PANS and a related neuroimmune disorder known as pandas. Gabriella brings both professional insight and deeply personal experience as a mom of two young adults with pans and as someone affected by pans and pandas herself. Welcome, Gabriella. We really appreciate you being with us today.

SPEAKER_01 0:57

Thank you so much for having me here. I really appreciate it. It's a really important topic that's near and dear to my heart, and I believe in advocacy and just spreading awareness about what it is.

Gabriella’s Family Journey

SPEAKER_02 1:08

Why don't we start there? Would you tell us more, Gabriella, about you, your professional background, and also your personal journey here?

What PANS And PANDAS Look Like

SPEAKER_01 1:16

I grew up in New York City and went to college in Ohio and came back to New York to work at Saxith Avenue in the Metropolitan Museum of Art in planning. I don't know why, since I've never been good with a number to save my life, but that's where I found myself. And then, you know, had got married, had kids and twins, and then one of them has very severe autism, very affected with intellectual disabilities. But um for a kid with autism, he was a really chill kid with autism. Um, he wasn't rigid, he didn't care about routines, he was really go with the flow, um, but he definitely had the socio communication issues and all of the stimming and all of those, you know, movement parts. And then one day he just became a mess. And um, this was the early days of PANS. Well, actually, PANS really had had barely been coined, just PANAS. PAN stands for, and this is the tongue twister part, uh, pediatric acute neurosec neuropsychiatric syndrome. And pandas, which is a subset of PANS, is pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. So, really what PANS is, because any syndrome, if you see the word syndrome, syndrome merely just means one thing. It means it's a cluster of symptoms that happen at the same time. And it doesn't speak to how or why, like what's the trigger or or why it's happening in the body. And whereas pandas, we know the trigger and we basically know most of the disease mechanism because the same disease mechanism as acute rheumatic fever of the heart and sit and ham's career, which is a movement disorder. And whereas the body attacks self and instead of killing the strap, it kills the body, you know, starts attacking the body, either the heart in a rheumatic fever or the basal ganglia of the brain in sit and ham's career. And so pandas, and you know, what are these cluster of symptoms that really describe these two disorders and syndromes? We need to see a sudden onset or sudden worsening of OCD and or restricted eating or very um complicated, complex ticks, along with a host of other symptoms. And and those other symptoms are really, you know, people look at this and they say, well, there's no marker, there's no test, there's how can we possibly diagnose this? And it's really looking at the timing of the onset of those symptoms and what all of those symptoms are, because it isn't just uh ticks, it isn't uh just, and I don't when I use the word just, I don't mean to belittle the severity of any of those symptoms. It's just, I mean only OCD, only ticks, only restricted eating. It's often all three of those, plus severe separation anxiety, um changes in urination, like lots of bedtime wetting or having to peek often. There's a clear deterioration in school skills. Some kids suddenly can't do math. There you have a seventh grader who could clearly add two plus two, can no longer add two plus two. They have no clue to um mood swings, anxiety, rage, aggression. So, Timothy, you know, going back to my story, he suddenly became very rigid, wanted to be on schedule, wanted to do things the way he wanted to do it, um, didn't want to have his car seat switched to either side. And very strikingly, he had severely acute separation anxiety for me. And he was, you know, the typical autistic kid who would you'd walk in the room and they might not look up and they really might not pay attention to you. So, like suddenly I'm being called from school saying, Gabriella, something's going on with Timothy. He's hysterically crying. Meanwhile, his brother was having strap repeatedly. So we were not seeing signs of strap in Timothy. Maybe, I mean, I would get we would get him swabbed because he was nonverbal and you know, sometimes he was sort of more retreated into himself, but he was never coming up positive for strap. But his brother was, you know, so I'd bring both of them in. I was like, can you just swab both of them? Because I can't tell with an autistic kid. And this is really common in the pans world, like where they don't have the typical acute reaction to the infection. So they may not show signs of strep. They may, but some don't. Um, some kids may have be diagnosed with mycoplasm pneumonia, which on the street we know of as walking pneumonia, but they have no signs of walking pneumonia. They don't even really have a mild cough. If you did an x-ray, it would be completely clear. And so that's caused a lot of, you know, sort of consternation in the medical society because they're like, well, they don't have it, so we don't have it, you know, or they're a strep carrier. And as the infectious disease doctor at Mass General children in Boston, Dr. Pasternak, says, he's like, no, they're not strep carriers, they're having an immune reaction to the strep. It's just not in the typical way with strep throat or on the skin. Um, it they're it's in their brain. They're having a neuroimmunological reaction to strep. So um that was Timothy and actually Xander as well, my other twin. We weren't really paying attention to him because he was our neurotypical kid, and we just thought he was anxious because his brother was a lot of work, and he most of our life focused around his brother. So, you know, me and my group of friends, we just had a lot of very concerned siblings that, you know, we're talking about like how to support the sibling. It was like a main topic. And so, you know, I made sure that Xander got to do more activities and things like that. But what most of the community doesn't understand, you know, as a lay person or even in the medical community, unfortunately, is that there's so many, what some people refer to as pure O, where that compulsion is a mental compulsion. So you may be sitting here doing OCD while I'm talking and having reviewing and checking, like in your head. Like if I count to five, then I won't have to go home to check my stove to make sure it's off versus just physically constantly going to check your stove.

SPEAKER_02 7:42

Gabrielle, if we move forward from there, what what does treatment look like today?

SPEAKER_01 7:46

Okay, so diagnosis and treatment today, it's a lot different than it was back in 2007, 2008. Thank goodness. The approach really, so even if you're going to a very mainstream doctor using only prescribed meds and things like that, or more of an integrative where you may be using herbs and other supplements as part of it, the treatment triangle really holds for both kinds of modalities of treatment. Where it's a three-pronged, you know, if you had a three-pronged stool, you wouldn't want to take one of the legs out because then it wouldn't sit. So, and some of it has to do with timing, but really we want to turn off the source of inflammation. So some of the triggers that are most known are strep, mycoplasma. Um, for some kids, it's tick-borne diseases, and tick-borne diseases are highly underreported in every state. The CDC likes to say, oh, we don't really have um problems with that in such and such a state. Ohio has now probably has just as many cases as Connecticut. That's really important for Ohio residents to know that you may have doctors that are constantly telling you that ticks are not a problem in Ohio. That is that is completely untrue. Um, unfortunately, most tick testing through Lab Core or Quest is very unsensitive. There's reasons why it's very insensitive. So, unfortunately, to get proper tick-borne testing, you have to pay out of pocket for other um brands. You want to remove the source of information. So, say we have like my computer here, which is your brain, and we take a Bunsen burner to it, um, and we start to inflame the motherboard, and the motherboard of which is our basal ganglia in our brain sort of starts to shut down and we have less control over things. So you want to turn the Bunsen burner off so that more things on your computer in your brain stop getting inflamed. Um, hopefully we identify all the different infectious triggers. But if we don't, then we're going to keep inflaming it. Um, so say we get all of them. That doesn't mean our brain's like, okay, great, we know how to act, we'll do everything normal, we'll go back to normal, we'll stop attacking your basal ganglia in your brain. Unfortunately, that doesn't necessarily happen right away. And then we may need something to really reset the immune system, which is typically IVIG, which is immun intravenous immunoglobulin, which is a pooled blood product. It's the basically the plasma from your blood. And through an IV over two days, many hours of a slow infusion to reduce side effects, it basically resets your immune system with new immune cells. It's like, ignore those bad guys, bad actors, we're we're in here to take over. Um, you know, those with an immune deficiency, also, because some of our patients have a comorbid health diagnosis, they would do a low dose, which sort of it's like if you're drinking a cup of coffee and you just want to top off because you don't have enough coffee to get through the day. You just need to add a little bit more to your cup. So with our pans kids, often they need more than that. They need a big infusion of really healthy immune cells. And then the other part of the treatment triangle is the psychotherapeutic triangle. Um, we know from evidence through studies through Stanford that a lot of the SRSRIs and um some of the psych early psychotropic meds can cause worse side effects than if you didn't have PANS. Um and you just had actual major depressive disorder, general anxiety disorder. We know that a lot of the PANS patients react more strongly in a negative way to these medications. But having said that, sometimes it you still have to do it. Um, so the rule is starting low and going slow, often staying at a subclinical dose. And some of the psychiatrists are like, yeah, that's not going to do anything. Like it's like a half a tablet of a SSRI. They're like, that won't do anything. And then it does. Um, so there is a bit of a paradigm shift for some of our doctors in approaching psychiatric interventions. It depends on what it is. You know, with OCD, they may need a higher dose of Prozac, but working very slowly. And then there's the psychotherapeutic part of, you know, and what's really important to know is that again, another paradigm shift in our thinking of timing and therapy. Normally, you know, with OCD or depression, we're like, let's get you into therapy right away. Um, which of course is really, really important for anybody, especially if, you know, they're having suicidal thoughts or behaviors, you know, you you want to get them mental support too. But in PAMS, it's going to look a little different in terms of what our expectations are in therapy. Maybe that time they could get comfortable, you know, talking with the therapist, but actually if they're having OCD-related thoughts that, you know, of self-harm, um, which is a major theme in OCD, you sometimes have to wait because ERP, exposure response prevention, is nothing but a choice-based therapy where you're choosing to not do the compulsion. OCD therapy is not aiming to say, not have that thought. You may have to live with those thoughts, but it's saying, Oh, we're not going to do this compulsion. And that is a very highly choice-based activity. But when our brain is inflamed, you are not able to make a lot of choices. This is neuroimmune symptoms. So when we think of behaviors, we're like, oh, that child's having a behavior. They're having a behavior of anxiety, they're having a behavior of not doing this, a behavior of OCD. Um, but really it's a neuroimmune cis symptom. And we have to shift. I always try to get people to say, oh, don't call that a behavior, call that a symptom. So we can really understand the neuromunological root cause of what's happening with these symptoms.

The Cost Of Delayed Treatment

SPEAKER_00 13:42

What happens if um, Gabriella, that if it goes undiagnosed or untreated or not treated quickly?

Suicide Risk And Hospital Realities

SPEAKER_01 13:51

Like anything, early diagnosis and treatment leads to better outcomes. Like we don't say to a cancer patient, oh, well, let's just wait and see. You would never think about doing that. If you cut your finger with a large something, you you wouldn't say, let's let's not clean it up. Let's let it fester. It might be it might be fine. Um, and so it's that's the same thing with pans. You want to identify and diagnose and treat appropriately because you're gonna have better, better outcomes. For those who are caught very early, and sometimes we miss the early because this may be a very low severity. We may chalk it up to being three. We may say, oh, they're starting nursery school, and so there's going to be more separation anxiety, you can sort of write them off in terrible twos and terrible threes. Or, oh, well, they just have anxiety, they just have OCD, or they've always been like that. Maybe they've actually had PAN since a little age and it's gone. So we want to be able to treat very quickly. We call it the sort of the cost of an action that where if we treated them early with an extended course of antibiotics, maybe some MSADs when it's low severity, we may be able to stop the disease trajectory almost in its tracks in terms of severity. They may continue to have small flares. This is a highly episodic um disorder until it becomes chronic or static. Um, and so we don't want it to become chronic or static. There are a few cases out of Stanford that become chronic right away, um, but most of them are relapsing and remitting. So we want to be able to get back to baseline very quickly with most of them. It can be harder to treat sometimes. Sometimes we have to sort of move up to, you know, instead of an NSAT, maybe use a steroid or a methotrexate and do IVIG. We may have to do more involved medications for longer. Um, so it's not that there's no hope for patients getting better. It's just the road that journey may be a lot longer and a lot more expensive and a lot more stressful. It's heartbreaking and it's scary as a parent, and just putting yourself in their shoes, how scary it must be, because they don't necessarily have language to talk about some of this stuff either. So, you know, you're thinking about their developmental age and it's it's terrifying. And then you lose start to lose your friends. You don't want to go outside, you don't do your school, you're like, what's gonna happen to me? Like all of that is just anxiety driving.

SPEAKER_02 16:18

Gabriella, on this same note, if you're of course comfortable sharing, what were the mental health challenges for for you, for your boys, for your family?

SPEAKER_01 16:28

Oh, yeah, we've had a lot of history with that. So my one with autism, who we treated very early and quickly, and of course he's nonverbal. I don't think there was any uh there wasn't a he was very distressed and anxious, but um not suicidal and and he wouldn't have been able to participate in you know talk therapy of any kind because it'd be nonverbal. Um but my son, who was other son who was not diagnosed when he should have been at five, turned in a suicide note into his teacher in eighth grade. And the school somehow assessed us and said you could just go home. And um we thought we were watching him, and then he disappeared two nights later and we couldn't find him. I knew he was gone because his red sneakers were gone, and I just started running through the house screaming. Um, and then I went onto the street, into the middle of our very suburban, beautiful neighborhood, and just started screaming his name in case he could hear me on the top of my lungs at midnight, three in the morning, and screaming it over and over, and he heard me and he came home and we went off with the ambulance and stayed at you know, the psychar, which is you know, the seventh circle of hell, and then we were quickly put into a local um hospital psychiatric ward. And unfortunately with pants is really important is that psychiatric hospitals aren't set up to deal with the medical, and medical hospitals aren't really able to handle the psychiatric, but you have to make this choice because you there's safety and you can't treat a a person who's unalive themselves. So it's it's really hard. Um, and so he was there for a little while and then immediately into medical treatment. I was fortunate enough to already have a PANS doctor at that point because of my other son. Whereas a lot of times there's a big gap. So at Aspire, we always try to say, get it, get on a waiting list and call every day to get off the waiting list. So at least there's like less gap in care. But often there's this gap in care. For my son, we did not have a gap in care. Um, but still we weren't able to always get the same treatment. And then a couple of years later, he had a big flare and he didn't leave the house for one and a half years. We did steroids, which normally you wouldn't do with Lyme because he had Lyme and Bartonella at that point on top of all the strep, um, because it's immune suppressive, but it had worked for me, and I'll go into my story of that in a moment. Um and that between that and adoxycycline, there was a big turnaround. It was trying to find the right antibiotic too, which can be really hard. And a lot of doctors aren't willing to try try anything. So, but then he had to go on steroids again because of his lungs, and at that point it was a little bit too much steroids, and then he became um very suicidally depressed. And but because of the trauma of being in the psych hospital before, you know, it was like, what are we doing? Are we taking him there? And it's this horrible choice of what are you doing to do. And so we just sat there 24-7 for about a week and just whispered into his ear that he would be fine because he he liked that, unlike when he was in a rage when you couldn't talk to him because that frontal lobe is just firing on all four cylinders where you don't speak. So this was like, it's gonna be okay. It worked before, it's gonna be okay. It's just a little too much steroid, and just like just sit there next to him 24-7 for about a week and a half. Um, and he's doing great now. He's hopefully not laid off from his job where they announced layoffs on Friday. So I'm waiting to find out about that. Um, but he's got a job as an electrical apprentice. Um, you know, he moved forward with his life, like he we got him better, but it was years of rage, and severe anxiety, severe OCD, it's just crippling, like terrified. Anyway, so fast forward, I'm in my 40s, I guess, or 30s. I don't know. Xander's bringing strap into the house, and I started having very different thoughts about suicide. And it was more now we know a self-self-harm suicide, where I was like, but you thought it, but you thought it. And I was like, I don't think I'm going to. And then, but I was also really depressed and stressed, and Xander was acting cuckoo, and Xan Timothy was having a really hard time, and I was like overwhelmed, and we had no money, and we lived in this one-bedroom apartment, and my husband was not present at that time. Like, there was a lot going on. Um, and I was like, I turned to my husband, I go, This is really bad. Like, I cannot turn off these thoughts about hurting myself. Like, they will not turn off, but I don't want to hurt myself, and I need to be in a place where I'm not going to because I'm afraid I'm going to. So I walked myself into the hospital and they put me on a 72-hour hold immediately. But at that moment, I had strep throat, and I walked into the hospital with a bag of augmentin and a bag of steroids because my throat was so swollen, and my ooh la thing that hangs down was so swollen that they're like, you need a steroid too, which is not normal for just regular strep. Anyway, the point of this whole thing is that I was there for five, six days. And at that point, I've taken six days of augmenton, seven, because I I think I just started it the day before, and the entire steroid taper pack. So the two main parts of the treatment triangle. And I wasn't talking, you know, in group therapy, which was a joke. So I don't really count that as a third part of the treatment triangle, but I was on my Prozac and whatever. And and so I was really doing the full treatment triangle if we look at it. And by the time I left, I was like, God, I feel great. And I was like, I could I got stuff done, everybody's like, oh. She needed a break. I mean, I was like, have you ever there was no resting at a psychiatric hospital? I was like, no, like that was the most stressful place I've ever experienced. I never like I did not enjoy it. Like there's no rest. I won't talk about all the people there, but there's no rest. And I was like, I don't know. And at that point, I hadn't even heard of pants because it was like 2006 seven early. And so fast forward many years to when we moved to Connecticut, and um both boys were in a pans flare. Both boys were home, both boys were anxious, and I was having strep as well. And I had this thing called a cholesteroma, which was an ear tumor-y thing, causing lots of repeat infections in my ear. So I was constantly in infected by different bacteria in my ear. And again, my OCD went raging, my harm OCD went raging, um, my gesturate went raging. And so there I was back to those suicidal thoughts. But I knew I was like, and then I went back on augmentum and steroids and everything cleared up again. And I so I called my child's doctor and I was like, we need to go over me. And she was like, Wow, you clearly have PAMS as an adult with soft signs as a kid. So I've lived the thoughts that all the families and these kids that I advocate for at Aspire for many years. Took me a long time to diagnose. After COVID, I I have more flares than I did before when it was just strep related. So I go through it often. Um yeah, so we've been there.

SPEAKER_00 23:50

Yeah.

SPEAKER_01 23:50

And it's a terrible place to be. And I just really want my life is dedicated to helping people suffer less.

SPEAKER_00 23:58

Right. So through Aspire for families who may be listening and dealing with these challenges, what kind of advice or resources um can you offer and where can they turn to find you and aspire?

SPEAKER_01 24:12

Our website is www.aspire.care. Um, or you can find us on Facebook or Instagram at aspire.pans. Um, there's tons of aspires. If you just put into search, Google search, aspire, pans, pandas, it'll come up because there's a million aspire companies out there. Um and really go through our website. We have a Facebook group. We have chit chats, we have a dedicated chit chat in Ohio. Um, if they look into the search bar for chit chats, it'll come up and they can register. Um, we have a wonderful group in Ohio. We meet monthly via Zoom, the first Wednesday of the month, actually. That one's a set one. Um, and we have some of the same people come every month, and new people come every month. So they get a lot of support about, you know, on the emotional side, helping to find resources, explaining some of the intricacies of this disorder. Um, so we have a really great group in Ohio where they can find support.

Final Thanks And Closing Message

SPEAKER_02 25:10

Gabriella, thank you so much for sharing your story, not only about you, but your your boys, your family, and also sharing your expertise and your obvious passion for this, not just for this episode, but also for the webinar that uh that you guys did in last month.

SPEAKER_00 25:25

That's right. And you can find the video of that webinar on the Ohio Suicide Prevention Foundation's YouTube channel.

SPEAKER_02 25:31

To our listeners, thank you as well. When you listen to our episodes, you break stigmas, you break barriers, and you care about mental health and saving lives. This is Voices for Suicide Prevention, brought to you by the Ohio Suicide Prevention Foundation.