Understanding Flares: Stanford Study Research Reveals Four PANS/PANDAS Course Patterns
This is the transcript of the third episode of Flying Through Fog: A Podcast For PANS/PANDAS Caregivers. Note that there may be some mistakes in the transcription.
Krystal Vivian: Welcome to Flying Through Fog, a podcast for PANS/PANDAS families. I’m your host, Krystal Vivian, and I’m joined in studio by my co-host Lindsey Forsyth, a mom of kids with PANDAS. Welcome, Lindsey. Thank you. Hi everybody. Hi. We’re also joined in studio today by Angela Henry, a licensed clinical social worker based in South Bend, Indiana, who specializes in serving children, adolescents, and families with OCD ticks, Tourette’s Disorder, anxiety and body focused repetitive behaviors.
Angela was also a panelist on our Surviving The Flares podcast miniseries. Welcome, Angela. Hey, nice to be here. Thanks for joining us for families Navigating the complex world of PANS and PANDAS. The path to proper diagnosis and effective treatment has often felt like traversing an unmarked wilderness.
Parents and Lindsey has talked about this. Parents frequently describe years of confusion, conflicting medical opinions and treatment, attempts upon treatment attempts before finding answers. But that’s why today’s discussion is so significant. Today we’re gonna discuss a groundbreaking Stanford University study published in April, 2025.
That’s this year that can help parents and medical providers alike better identify and understand PANS/PANDAS, and how these diseases evolve from onset through treatment. And Lindsey and Angela are here today to share their insights on this study. So I’d like to start, um, and either one of you can answer this question.
Let’s start by giving us just a brief overview of what this Stanford study aims to accomplish.
Angela Henry: Yeah, so this is such a great study. I’m so glad that they came out with it. And I’m sure as Lindsey kind of test, it gives, uh, language to really what parents are feeling and have been knowing, um, through their experience.
And so now we just have a way to, uh, have a collective understanding. Of what parents, uh, have been noticing too. So really the study helps us to have a common language for flares, and we really need to have this universal language for flares so that we can talk about flares with people having a common understanding of what’s being spoken about.
So, for example, you know, someone can say that they’ve been feeling ill, right? But when we say we’ve been up maybe all night struggling with an abdominal or intestinal flu bug, we know exactly what they mean, right? So when we’re talking about these important things, we want everyone to be on the same page.
So having this common language helps us improve clarity and understanding in terms of maybe a, a clinical communication between medical providers and parents and the greater community. It really helps us guide treatment. Um, and the study looks at clinical outcomes, um, to have a, a really, a consistent working identification of flares, and that really leads us to have better and more validated biological markers.
And when we don’t have a common language in which to understand a, a common phenomenon, it really hinders research and diagnosis and treatment decisions. This really lays out exactly what we’re talking about when we’re defining flares and the, the different course patterns and how long they’re lasting, um, averages.
It just really helps explain this phenomenon of flares.
Lindsey Forsyth: And I think from a parent’s perspective, this is Ally publishing the conversations that parents have anecdotally. In parent support groups anyway. Mm-hmm. So it’s information that we all know, um, when we’re on the other side of flares. But, uh, just to give you a, a little bit of background, and I know that we’ve, you know, this is not our first podcast, but, um, my son was diagnosed seven years ago and a lot has changed in seven.
Um, but somewhere in that seven years, my family and our local community worked together to raise some funding for research and organically as a result with advocacy and education. Um, I have had the, um, the privilege of working with many other families that have just gotten, you know, information on how to contact me because when you’re a mom or a dad seeking out answers for PANDAS, you just need to find a person that has been there and that you can ask questions to.
And as a result of that, I’ve been able to learn a lot beyond what our experience is with my own children.
Lindsey Forsyth: Um, and basically once a parent can wrap their mind around what this is and what to do about it now in the present moment when you start to like really settle into what’s happening to your child, your next question is, oh my gosh, what does this mean for the next five years?
What does it mean for the next 10? What does it mean for the next 20? Like, will they be a normal functioning adult one day? Are the things that I’m doing right now messing up. You know, their, their, their foundation for later. So it’s really helpful to have a, an objective tape measure for parents so that you can set an appropriate expectation about what they can expect so that they’re not surprised if and when another flare happens.
Um, it, it just gives some science and some actual published data behind what so many of us have seen and allows the parents to exhale. They sort of understand there’s a roadmap. So I, I mean, I’m very excited about this and I think that it’s fantastic that people in a research position are thinking about the importance of this language.
Krystal Vivian: The study is called Defining Clinical Course of Patients Evaluated for Pediatric Acute Onset Neuropsychiatric Syndrome, PANS Phenotype Classification based on 10 years of clinical data. That is a very sciencey way of saying that they looked at 10 years of medical notes and medical records for patients with PANS to be able to identify.
What are these patient states? What is the course? What are the things happening? Um, what are the patterns that they can see? And to Lindsey’s point that it’s repeating exactly what you’ve been saying. Um, I wanna dive in to a little bit specific of what the study covered. Uh, first the study identified different patient states.
Can you explain what it means when a child is quote unquote in flare? Versus in recovery in simple terms,
Lindsey Forsyth: sure. I actually use a number scale with my kids. They’re old enough to be able to say how they feel. So zero means I’m feeling completely myself. 10 means I’m feeling completely unlike myself and feel like I’m at the peak of a flare.
Um, and so basically in, in my mind what these things mean is where do you fall on that scale or that continuum, or if you could even picture, like in your mind a bell curve mm-hmm. Where baseline is right at the bottom. And then when you have an infectious trigger, you start to build in terms of autoimmune symptoms.
Um, neuropsychiatric symptoms more specifically. That peak. And then over time they improve again. Once the immune cells that are there to attack the infectious trigger, begin to downregulate and become more normal in the body. Mm-hmm. Um, so the way that this study breaks it down is there is an in flare category, which is where you have an escalated, um, neuropsychiatric presentation of symptoms, and you are impaired functionally compared to your baseline.
So that might look like. A child who normally goes to school with absolutely no problem, total social butterfly, um, might start to, oh mom, I really don’t wanna go to school today. I have a stomach ache. I don’t wanna be away from you. Or a little tingling at night when they’ve been, um, you know, perfectly dry and no bedwetting because they now have secondary and resis, or they’re starting a very mild tick.
Um, that then over that typically, and doctors will vary in what they say. Um. But the flares typically peak within two to three weeks after onset of infectious trigger is what anecdotally. And now, I don’t know in terms of like actual scientific studies, drilling it down to the day, but you’ll see that the flare will get worse and then it will get better.
And then when you’re in recovery, you’re definitely coming down off of those peak symptoms. Maybe instead of being. You know, I am at an eight and feeling absolutely horrible. I’m, you know, coming back down to a three or a four, feeling a little less anxious. Um, symptoms are being noted by siblings, as, you know, not as enraged or emotionally labile.
Um, and you know, you’re feeling back to baseline at a zero. So you just typically see a bell curve, and they’re naming points on that bell curve now for us, so that we can say. Okay, I’m at an eight to mom, and mom is able to say the doctor. Okay. He’s in a flare. Um, we’re, we’re getting now to a point where we’re in recovery, um, and then, you know, in recovery means back to baseline.
So again, it’s just giving everybody that same scale to go off of.
Angela Henry: Sure. And I think, um, with, you know, when we’re doing studies, the researchers are very specific about what they’re considering. A flare is what, what, um, kids are meeting criteria. And they’re also talking about specifically in this research study, recover could be totally back to baseline full recovery.
And they also talk about partial recovery. Mm-hmm. Where their symptoms have reduced, but maybe they haven’t come back to baseline too. Mm-hmm.
Krystal Vivian: Okay. They also talked about in the study about. Isolated flares and flare series. Can you talk about this difference and why does it matter to be able to distinguish between an isolated flare and a flare series?
Angela Henry: So when we’re talking about, um, the, the patients in this study were classified into these, again, these different flare states, um, meaning when they’re in a flare, they’re, you know, they, they might be also in this process of recovery. So when we’re talking about a flare, the study itself was defining this as having an escalation in the neuropsychiatric symptoms and then having a functional impairment compared to what their typical baseline functioning is, or you know, their behavioral emotion, academic functioning, et cetera.
So when the study is describing in recovery, they’re defining it as a clear improvement from the neuropsychiatric symptoms that we would see during the time of a flare. So the study is important in that the patients being studied, they were using their own baseline behaviors as the source of knowing, uh, what the baseline is from flares.
And when we’re talking about these different kind of flare states, the isolated flare, um, this is where the flare lasts about four months. And what they were seeing is about 95%. Uh, of these, uh, flares were resolving within 12 months. And then when they’re talking about a flare series, uh, this is the type of flare where there’s multiple symptoms that escalated, but they really never truly came back down to baseline in between the flares.
So these type of flares lasted, they’re finding much longer on an average of around 14 to 35 months or so, or a little over a year to just under three years and. In this study, it’s, it’s important because if we can catch those isolated flares and treat them and bring them back to baseline, then we have better outcomes.
And similarly, if we can help educate other parents, other medical professionals, teachers who are at the front line in seeing these challenges, um, initially, if we can catch these first initial flares and then get a diagnosis and treatment. During that first initial flare and bring it back to baseline, then we can have, um, a much better trajectory in terms of treatment outcomes.
Lindsey Forsyth: Yeah, and I think, you know, for, for me, I had one child who had very isolated flaring and I had another who was basically in a constant, you know, flare series, a constant state. So yeah, it’s just, they’re all so different. And that’s what I say to families that I talk to is every child will be different.
Every flare may be different, every trigger. So for example, and I’ve said this before, but my son gets a flu shot and he gets ticks for six months. My son gets any sort of virus and he doesn’t get any ticks at all. So I don’t know what’s happening under the surface, but I know what looks very different depending on infectious trigger, and I have seen that to be true.
Um, like so for example, from some kids who were doing well, they relapsed from COVID. Some kids like mine do fine with COVID, um, but relapse from mycoplasm, pneumonia infection. So it depends on the immune system of course. And it depends on each kid. So just understanding that, you know, you might have one family and different presentations in terms of
Angela Henry: a flare and it’s allergy season.
Lindsey Forsyth: Yeah. So many of your kids are flaring right now from Right. Allergies, right? Right, exactly. And so don’t freak out if. Your son doesn’t look like the family that you’ve been talking to from a parent group whose son did fine after, you know, or daughter did fine. After, you know, two months flaring from something that your son or daughter has been struggling with for longer, it’s, it’s gonna look different.
Krystal Vivian: So different triggers can cause different types of flares, but the study did kind of identify four course patterns that typically it’s gonna go through. It’s gonna go through one of these four, right? Single flare, primary persistent, relapsing remitting, and secondary persistent. Can you talk about each one of those patterns and just kind of describe what that means, and then which one is most common?
Angela Henry: So yes, of course. The first pattern would be that single flare, which we sometimes call the initial flare or the trigger, and now these initial flares, kids’ symptoms will either resolve. They’ll make a full recovery or a full recovery or a partial recovery. And then when that kiddo recovers from that first flare, but then has another, we call that the relapsing and remitting pattern, where they’re having multiple flares, but they have recovery, and that recovery, again, is either full or partial in between those flares.
Then there’s also the kids who have that initial flare and the symptoms remain challenging and they don’t recover from this initial flare. And when that happens, the youth would still be considered as having, um, what they’re referring to as a single flare. But there’s a sub classification as a primary persistent in terms of the clinical course.
And when these kids who have been classified as relapse remitting, when they continue to have flares but without full recovery, and they have a maybe a, a subsequent increase in functional impairment, they’re saying for around 12 months, then this course changes into secondary persistent. Meaning there have been relapses with no recovery and it’s lasted for 12 months or more.
So basically what this looks like, you’ve got your kid with their initial flare and acute onset within three days, or hyperacute within three to seven days, and if they have that initial flare and symptoms, don’t go back to baseline. You have primary persistent. The kiddos flares return or semi return to baseline, um, relapse remitting, and then you’ve got the same pattern that continues to happen, but then there’s not a return to baseline and there’s an increase in challenges with functioning over a year.
Now you’ve got that secondary persistent. What they’re showing is that the relapse remitting is the most common clinical course.
Krystal Vivian: Wow. So it’s very common for it to Up and down, up and down, and you’re just going back and forth along that bell curve. Yes. Yeah. And
Lindsey Forsyth: I’m not a doctor, but as a mom, as a person in this world who understands a little bit about autoimmune disease, that sounds right.
Right? Yeah. Like doesn’t it make sense? So, I mean, I think ultimately, medical jargon aside parents. I wanna know what’s my worst case scenario here? Like what could we be looking at? And I think it’s helpful to have something to point to. Now that’s published research from Stanford that says, you know, it could look, it could look like a marathon, less like a sprint.
Mm-hmm. And that’s okay. And there’s still things you can do. And if you can track this and if you can monitor and you can communicate with your doctor effectively, then that will help to form treatment. Because you can now understand where you’re at with common language. Again, going back to Angie’s point about why this is a and is a great study, I think it’s, I think it validates parents for one, and I think that it also gives me something that says to parents, it could be one of four different things.
You might have a child that gets a really. W you know, maybe get some eating restrictions and ticks after a strep infection. And you catch the strep and you treat it and you ride off into the sunset and you, it becomes a blip on the radar. Um, it could be the first sign of what ends up becoming quite a, a rough few years of your life.
But hey, we have people that can help you. And we have people that understand this language. Now we’re speaking that, um, I can take this study into my doctor and say, look, I. I don’t, I don’t have all the answers, but I have this information from Stanford and they’re saying that a lot of kids will have symptoms that get better and then worse.
So I mean, I think for me, what it comes down to is like I have one that’s relapsing and remitting, and that’s what I tell people. I say kind of think of it like a stock market ticker where you might have. A peak in your neuropsychiatric symptoms, and then it starts to go back down to baseline. But then if you’re coming into allergy season, or if you have a dental appointment, you lose a tooth, you have another spike to your immune system, you’ve got, um, you know, COVID or flu, you might see that that stock market ticker goes back up because you’re having another trigger.
And then it might come back down again, but it might go back up before it goes back to baseline. So again, it’s saying to parents, this is normal. Don’t freak out. Let’s get you help and we’ll be there, you know, through it. The whole, the whole, the whole way. But don’t, don’t panic. If it comes back, you don’t, you know?
Oh, I thought it was cured. It may not look the same way to everybody. Mm-hmm.
Angela Henry: Yeah. And I think that’s why it’s called a, a clinical course. You know, we don’t know exactly what’s gonna happen.
Angela Henry: Um, we can have, we can have hope, um, for what might happen, but everything changes. Mm-hmm. Yeah.
Lindsey Forsyth: And that’s okay.
There are ways to get through it. Just knowing to expect it is really helpful for a parent. Yeah.
Krystal Vivian: So let’s dive deep into those isolated flares quickly. Um. The study found that 95% of isolated flares in patients meeting PANS criteria, specifically in those patients, those resolved within about 12 months.
What does that mean for parents whose kids are currently in a flare?
Lindsey Forsyth: Well, you know what? That, that’s a not surprising to me. So I feel like most of the families that, um, I speak with their first flare, that they really, truly notice enough to get diagnostic help with. Um. Is definitely shaking up the family a bit and it’s really difficult.
Um, and within 12 months when you treat appropriately by attacking that trigger, um, and potentially immunomodulatory therapies, potentially tonsils and adenoids. It depends on your doctor. It depends on the family. I mean, every family kind of charts a different course with their. Um, PCP or their specialist.
Um, but I think it, it again comes down to providing expectations for what that timeline might look like and knowing that, um, you, you shouldn’t panic if it’s not always a straight quick line. And that sometimes it looks a little bit more like loopy loops and, um, you might have to pivot a couple times or, you know, create some new plans with your doctor as things progress.
But know that the flares do typically resolve and that these kids do get better with treatment. Um, Diana Pullman, when I, she’s the executive director of the PANDAS network, and when we have cases that I’m like, oh gosh, I, I need to get them to maybe a different doctor than where they’re at in, you know, rural Pennsylvania or something.
And Diana’s really helpful at triaging to good experts. She will give hope to parents and say, these kids do. Improve with treatment. Mm-hmm. It may not look the same to everybody. It may not be quick, but they, they do get better if attacked. So, um, I think that that’s an important thing to notice about, you know, just 95% of isolated flares get better within 12 months.
That’s hopeful to me. Yeah.
Angela Henry: That’s hopeful. And for those kiddos that have secondary persistent and, and things are. Taking longer mm-hmm. Than maybe we thought. That’s when we, clinicians and parents and providers call in extra resources and support. Mm-hmm. So, you know, the families and the siblings and, and the child, they’re all having, uh, trauma, uh, at different levels from what’s happening.
And so that’s when we provide supports to siblings. Mm-hmm. Um, for more longer term
Lindsey Forsyth: help. That’s a really good point. Like I feel like I’m in the vacuum of medical science reading this, but your perspective as a social worker is helpful because you’re exactly right. Parents get to a point by the time they’ve even gotten to the diagnosis, it’s been, and we’ll talk about it a little bit later, but it’s sometimes been years for these people.
Lindsey Forsyth: And now you’re like, okay, well, okay, great. Now we’re in a flare and it feels like all hell is breaking loose. And I feel like I’m back to ground zero. This might be where you start pulling in an expert that can help your family cope, that can help the siblings, that can help. You know, here are some great podcasts for understanding how to help a child who’s, you know, in the thick of it and having a really ti hard time emotionally regulating.
And by the way, you parent are triggered, your spouse is triggered, your, your extended family’s triggered. That’s a really good point is how do we assimilate a great support system for you knowing that this may not be four weeks, five weeks, six weeks, even six months.
Krystal Vivian: Yeah.
Angela Henry: There’s no,
Krystal Vivian: no magic ball to know, right?
No exact thing. Uh, I think another finding in this study that some might find surprising, but I think a lot of parents of PANS/PANDAS kids will find validating. Is that there’s many children who had psych neuropsychiatric flares before they formally met PANS. Criteria. Why is this important and what should parents be looking for?
Lindsey Forsyth: I could go, I feel like we could have a whole 10 part podcast series on this question. Wait, Oliver, do you go with it? The answer is yes. Like that’s all I can say is yes. But um, why would that be an important. Piece of information. Well, first of all, I think it begs the question of OCD as one of the main symptoms.
So Angie is so good with families who experience OCD, um, and children specifically who are in the thick of that whole thing. OCD is very covert in children. So your child might get an infectious trigger. And might actually have an acute onset of OCD, but they’re not saying, mom, I have these really weird thoughts that I keep getting in my head.
I keep getting these like doubts or some people call them intrusive thoughts, which I know is, you know, vocabulary that some people use, some people don’t, but kids don’t know that. It’s not normal to think certain things. So it might come out as separation anxiety when, for my son, it was really, I’m scared that if you’re out of my sight, something bad is gonna happen to you.
I’m scared that if we drive through this area, something bad is gonna happen to me. To me, I was just like, what? He’s so cranky, like why does he not wanna go to school? So I think that parents might miss. Um, a lot of those quick symptoms that you might see when they, um, when they start, and so they don’t know to say to the doctor, yep.
He checks all of these PANS criteria boxes, because you don’t know what you don’t know. Heck, you’ve never even heard of the disease. So when you don’t even know that PANS/PANDAS exists, how can you meet criteria that you don’t know exist? Right,
Angela Henry: right. And I, I’m. When I first, uh, the, the question I, my brain immediately went to education again, because if these kids are, if, if we don’t know that it exists
Angela Henry: And parents and educators and therapists mm-hmm. Are gonna be the people that are seeing this first because parents don’t know what’s happening. Uh, maybe the educators are seeing this behavior that they can’t explain. They’re gonna take their kids to a therapist. And if the therapist isn’t educated in this being a possibility or they don’t even know it exists, then again, they’re not getting the proper treatment We are treating, but we’re not treating the brain inflammation.
Mm-hmm. Which is the BA base root cause cause of this. And so we can treat all we want, but we’re really not making any headway over time. So we have to have more education so we can catch more of these kids in the net. Right. To treat them properly.
Lindsey Forsyth: Completely agree. And I, and so Krystal, your daughter was, she’s three.
She’s three. Okay. So you have a 3-year-old daughter. How many times have you and your husband thought, oh, she’s weird sleep regression, or, gosh, she’s really getting mouthy. That’s that, that’s that independence. She’s, you like all of the things, the three major
Krystal Vivian: thing. We, we literally talk about that like every day right now.
Right. And it’s, but, and I think about you and I think about PANS/PANDAS all the time. Of is this, is this behavioral or is, is this normal child development? Mm-hmm. Or is this something to watch for? And we, I mean, I think right now it is just normal behavior development, but like it is so easy, I could see it being so easy to completely write off.
Lindsey Forsyth: Right. And so like for my son, we caught it when he was seven. His onset was four. I remember the. Lump on his neck. That was his only symptom. His lymph node was this. It was huge. And I took him to the doctor and I was like, what is happening to him? She’s like, well, we need to test him for strep. It was strep.
That was his only symptom. Four years old, a week later would not leave my side. What stuck to me like glue. And I thought, huh, that’s weird. But again, I’ve said that before. He was tired. It was the end of his. School year. He was in an environment that he wasn’t as familiar with and I’m like, oh gosh, this four thing, it’s really tricky.
Yeah. Well that’s my first time I had my son as a 4-year-old. That’s my first day living that day. So I chalked it up to just him being a normal kid. And I’m not saying that every, like you said, Krystal, like I don’t, I think things are very developmentally appropriate. It just muddies the water for people who do fall into the PANS/PANDAS umbrella.
Because it’s not always obvious. It’s not always obvious. And then they say, well, you don’t have acute onset, or my child didn’t have an acute onset. But then if they go back, like Dr. Latimer, when she found that for Brady, we had to bring all of his medical records in and she triangulated, okay, he had a strep infection at this time, and then I had triangulated.
That’s about the time that I noticed this, this, and this behavior. Or he started to, you know, wet the bed and he was dry for two years. And she was able to, and that’s why I say document, document, document. Keep record. ’cause she was able to say, okay, literally you can see the ebbing and flowing of his neuropsychiatric symptoms after an infectious trigger.
And to me, I was like, God, how did I never see that? Well, it turns out a lot of families feel that same way because this particular point, 24% met PANS criteria after initial flare. Watch for milder neuropsychiatric symptoms that could be. Prodromal don’t miss subacute onset symptoms that don’t miss subacute onset symptoms.
I missed so many subacute onset symptoms because I didn’t know what I didn’t know.
Lindsey Forsyth: So that’s very, very typical. I feel like I have that conversation with most families who are catching it five years after onset because it’s just now gotten to the point where they can’t ignore it anymore. Mm-hmm.
Krystal Vivian: Another thing that the study found was that about 43% of PANS patients experienced a flare lasting longer than 12 months. What’s happening in those persistent cases and how might treatment differ?
Angela Henry: So the study kind of notes that this might indicate different underlying pathology or immune dysfunction.
And really when this is happening, it could require more aggressive or a combination of treatment approaches. So maybe there needs to be a focus on managing chronic condition rather than. Acute interventions. Yeah. Not treating the symptoms, but treating the actual whole disease. Correct. And then again, as we talked about earlier, that’s a time when we need to bring in more supports because.
Some of these, oftentimes these kids, there’s a lot of school refusal. Mm-hmm. So we have to look at academic functioning. What are we gonna do? Are we gonna homeschool, are we gonna non-school? Like, what, what are we gonna do, um, to support this family through the long haul of it?
Lindsey Forsyth: I mean, I have a couple of people in mind when I, when I answer this and thinking specifically of their own situation, um, I have a friend whose child has PANDAS, has had it for 10 years.
And she, she keeps relapsing and, and significantly relapsing. Um, and the interesting thing is that she just seems to get sick more often than other children. So it’s not that when she gets sick, she gets sick, worse necessarily than other children. But it’s that when she’s healthy. It’s for very, very brief moments.
And then she somehow contracts something else because she’s living a normal life, as normal as possible and going to school, and it’s important that she be social. So after a while, her parents started to think, gosh, I feel like she’s always sick though. And then that’s when you go maybe to an immunologist and you start to really say, okay, how do we not make her a sitting duck for this sequelae or for this, um, neuropsychiatric symptomology.
That comes as a result of being ill. And how do we address the immune system so that she can appropriately fight things? So it might look like bringing in an immunologist and understanding does this immune system have deficiency or is it appropriately working in all the ways other than PANS/PANDAS?
And if so, great, you can check the box. Or maybe that looks like, um, do we need to look at co-infections? Have we had, uh, a tick bite where we need to look at Lyme disease, which might make it a little more difficult to bounce back. With IVIG or treatment modalities that might work for Kid A, but haven’t been as effective for kid B.
So there are, so I tell people there are just, there’s so much nuance to this whole thing and there’s also at every corner you could pivot in three different directions and all of them could be right. All of them could be sort of right, one might be better than the others, but you just sometimes have to figure that out.
So again, it’s setting the expectation for families that sometimes it’s more than meets the eye. Don’t panic if this treatment that really helped. Betty did not help Jane. We can still figure this out, but we might need to look at, okay, do we have something rheumatological going on? Because a lot of times you do see Constellation.
So what Stanford has also said in the past when I’ve heard Dr. Frankevich speak, is that you might find that kids who have a presentation of pants, PANDAS may also have a presentation of, um, like an arthritic component to their body. Or, um, you know, you might see in other autoimmune diseases where you have diseases coupled with one another.
So there, there could be many reasons why these children don’t quickly respond to the same treatments across the board or, or respond in the same timeline.
Angela Henry: I’m just thinking like this, uh, you know, families, like you’re talking about, you know, when they’re chronically sick and their immune system, um, is so fragile, they’re mm-hmm.
Just sick all the time. They go for the treatment. Um, but then they get sick and then, yeah. Great point. Kind of like it undo the treatment. Great point. So of course they’re persistently, you know, having a clinical course of,
Lindsey Forsyth: so to piggyback on that, yeah, we’ve done IVIG twice. That’s just the way my family has chosen to do it.
Not everybody does. IVIG. We’ve done it twice. It’s been very, very effective. The single most important thing I think we’ve ever done for, for our son. Um, they give you a prophylactic dose of antibiotic where we go to get our IVIG treatments so that you can stay as healthy as possible to allow that immune system to rest and reset.
Imagine though that you have immunodeficiency and you leave IVIG and three weeks later you’re back at school and you’re exposed and you contract. Your immune system is no longer resting, so what could have been a very, very effective treatment. It’s less effective now because the immune system hasn’t rested.
So there are so many different ways that this can all play out. And again, going back to there’s not like one normal way. Mm-hmm. It’s okay. We just have to pivot.
Krystal Vivian: How do these course classifications now that we have in this study, how do they help with planning treatments like that or deciding what kind of treatment to go towards?
Um, and with those discussions between families and providers?
Lindsey Forsyth: That’s the million dollar question. Right. I mean, I think US families. All do things very different. We all have reasons. This I, there are so many different moms that I talk to that I say, I did not do this with my child. I have five, 10 different moms that I’ve spoken to in the last couple of years that have had more of a, a homeopathic way of going about it, or a little bit more holistic or functional or integrative path to recovery.
And I will punt to some of those moms because. First of all, every family is going to be different by the way they feel comfortable handling medicine. Um, they might find that they jive really well with a doctor that I haven’t chosen for myself and vice versa. So I think it just gives parents the flexibility to say, okay, I might choose this treatment for my child because it feels in my gut that it’s better, but I might also know that this treatment.
May take longer and won’t be as big of a heavy hit upfront, and I’m okay with that because we’re maybe not in a horribly acute life or death situation. Or this could help to give insight into the expectations or the intensity of treatment. To your point where I need to stop the bleeding and I need to throw a life raft, and I need to take some pretty drastic measures, or I need to go to X, Y, or Z expert who’s really well-versed on immunosuppressant pharmaceuticals.
I mean, there’s so many different paths that you can take, and a lot of it does depend on how poorly or how well your child has done in terms of span of. Flare or how incredibly debilitating the clear the, the flare is or is not. Um, and so it’s just, it, it’s opening a very expanded portfolio of how you can handle things differently.
So, like, again, in my experience, which is what I draw from a lot when I talk to families, is we’ve, we’ve started in one direction and then we’ve had to say, okay, we’ve, we’ve stopped the bleeding. We are living a functional life as a family, we are handling this well. Now I really wanna make sure that I’m looking long term at how do I set him up for success going forward?
And that’s where I have pulled in an immunologist or I have pulled in, um, somebody who might be looking a little bit more at co-infections and just making sure that, you know, with his rheumatoid arthritis, we’re on the up and up. So again, you can always stop and reassess how does this look for my family and what are some new choices I need to make?
And that might mean in six months and it might be in two years. But it gives families the knowledge and flexibility to know that they might need to acquire different knowledge and flexibility.
Krystal Vivian: Wow. This is a lot. Um, and I think it’s so, it’s so helpful. It, and there’s so much more that we even haven’t discussed yet that I think that we can, um, but for the sake of time, I kind of wanna keep us kind of wrapped up.
From both of your perspectives, what are the most important takeaways from this study that you think parents managing a child with PANS/PANDAS should be keeping in mind on a day-to-day basis?
Angela Henry: Well, I think, you know, when we’re looking at the study, it really highlights that PANS presents very vastly.
There’s a wider range and many experience this relapsing and remitting pattern. Um, an initial flare, not necessarily may be representative of an entire course. And so it’s so important to document what the child is experiencing so that you can have a clear understanding of, of what is happening for them and.
It also highlights that, you know, as we talked about, one size doesn’t fit, all symptoms look different. The clinical course and pattern looks different. And you know, parents are trying to, to survive this with their kiddos. And oftentimes, you know, we see. Hypervigilance in parents, um, because maybe when they, uh, maybe the, the kiddo has a relapse, um, remitting type of course, when they start to see different symptoms, they’re so hypervigilant to the symptoms that, uh, it, it can become overwhelming and, um.
Just helping that parent move through the different challenges, um, and the, and the child move through the different challenges that come through these different course patterns, um, is so important. Mm-hmm.
Lindsey Forsyth: Um, well, I think it’s funny that you say one size does not fit all because Dr. Latimer has a presentation that she gave years ago that, um, it was the presentation that I watched.
When I was done, I said, my kid has this disease and I’m calling her right now, and I’m flying him out to see her. And that’s when I decided that’s what I was gonna do. But I think the, the title of her presentation is One Size Does Not Fit All. And I send that to parents when they’re trying to learn about it, because I think we get stuck in this mentality that it has to look textbook and sometimes it just doesn’t.
And so then you get confused and you have this pressure of like, well, what if I’m wrong or what if I just explore it? Be okay with the fact that you might have your own normal, that doesn’t look like anybody else’s normal, and you, you, it will become second nature to you as a mom and it will become, if you are very thoughtful about how you handle it with your child and you talk about it and you make them a part of that, um, equation and they can weigh in, you’ll end up with a child who has a lot of self-awareness that can say, I’m feeling this mom, or I’m feeling that, or I feel a flare coming on.
Make them apart to, to the, to the degree that they are capable and it’s not traumatizing for them. I mean, every parent has to know what that looks like for their family, but our children. Are such a part of that conversation that they can come to me with information that I can relate to their doctor because they will live with this potentially.
We don’t have longitudinal studies that say, you know, by the time you’re 30, you’re gonna be fine. I have to be thinking about the fact that my son might have a child who comes home with strep five or six times and he will be exposed five or six times in a year, and he needs to know what a flare feels like.
He needs to know how to, to, to identify that. So I think that it’s a little bit liberating to have this information where you know that it doesn’t have to look like this particular thing, that you will have a rhythm that you fall into with your child, with your family, and it won’t surprise you if they have a relapse when you’ve learned to expect it, but know that you’re still making progress in a good direction.
So ending with just. There. There is a hope around having this information in hand that you can provide to doctors from Stanford that they have seen, however many kids they’ve seen beyond just this study that allowed them to have that moment of aha, we need to publish a study about this. Right? So this is all very helpful information for families.
This is not doom and gloom. This is an expectation that your journey will not look like everyone else’s, and that’s okay. Make your child a part of that journey so that they can understand what’s happening. ’cause how traumatizing and traumatic would that be if you as a child felt this sweeping emotion all of a sudden and you didn’t know where it came from.
Lindsey Forsyth: Um, and then, yeah, just understanding that what looks like PANDAS for you may not look like PANDAS or PANS for me.
Krystal Vivian: Yeah. But there is hope. Mm-hmm. There is treatment and it will get better. Yeah. Wow. Thank you both. So much. Thank you, Angela. Thank you Lindsey, for your insights and your expertise, and we just appreciate both of you guys so, so, so much.
Um, thanks for your time today. Thanks for having us. Absolutely. Thanks. You’re welcome. Listeners, we will be linking this study in our show notes so that you can have that as a resource. We like to end each episode with a story of hope to let you all know that if you are flying through the fog right now, there is hope in the future.
The fog is just keeping you from seeing it right now. Here’s a story of hope from a PANS/PANDAS family.
Story Of Hope: Good morning. My fellow PANS and PANDAS parents, we are coming to you from sunny California and my son Jack, who is now 12, was diagnosed with PANDAS about a year and three months ago. You name the symptom. We had it, it was sudden onset, so it was very scary. We had no idea what was going on and. I’ll tell you what, we were at our lowest of lows.
I’m sure you all know that feeling of helplessness, not knowing what to do next, getting in rabbit holes, trying to figure out the next treatment plan. But I will tell you what, I just watched Jack run his third half marathon. He is about to start the sixth grade. And he is thriving. Is it perfect?
Absolutely not. We still battle a lot of our OCD and a little bit of separation anxiety. But there is hope. We were, we’ve been blessed to be surrounded by amazing community, which is so key in this journey, and be surrounded by amazing specialists and doctors, and it’s, it’s been a journey, but I’ll tell you what, there is hope you’re gonna find it.
And we’re all here for you. Good luck. Keep fighting
Krystal Vivian: listeners, we are looking for more stories of hope to share at the end of each episode. It could be a fun anecdote, it could be a short story about something your family experienced that you once did, that maybe once you thought was not going to be possible because of PANS or PANDAS. Please email your story of hope to PANDAS@federatedmedia.com.
You can send a short voice memo about 60 seconds long or less, or a short uh, paragraph, and we will read it in a future episode. That is it for today’s episode of Flying Through Fog. Thank you again to Angela and Lindsey for all of your insights. Thank you to our listeners for spending your time with us today.
If you found this episode valuable, please leave us a rating and a review on your favorite podcast app. It’s the best way to help other families get access to this information. And you can also share this podcast directly with family or friends. Flying Through Fog is edited and produced by Tommie Lee.
Special thank you to Legacy Heating and Air for your support of PANDAS Michiana, and this podcast. I’m Krystal Vivian. We’ll be back with more interviews and conversations on the next episode of Flying Through Fog.
If you’re listening to this podcast, chances are you’re a parent or a loved one of a child experiencing PANS or PANDAS. If you’re currently in the middle of flares waiting for a diagnosis or treatment and you need help, please seek out surviving the flares and emotional toolkit for PANS/PANDAS, families in crisis mode.
This is our two episode triage theories that can help your family while you wait for treatments. Search for surviving the flares on your favorite podcast app.
RESOURCES
Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts
Aspire PANS PANDAS Advocacy, Community & Support
Neuroimmune Foundation | Inflammatory Brain Conditions
Parenting Resources:
