When Strep Hijacks Your Child’s Brain: One Family’s PANDAS Journey
This is the transcript of the first episode of Flying Through Fog: A Podcast For PANS/PANDAS Caregivers. Note that there may be some mistakes in the transcription.
Krystal: Welcome to Flying Through Fog, the podcast where we dive deep into all things PANS/PANDAS. Including conversations with families, therapists, and medical experts. I’m your host, Krystal Vivian for our very first episode. Today I’m joined by Lindsey Forsyth, a mom of two children with PANS/PANDAS. Welcome, Lindsey.
Lindsey: Thank you for having me.
Krystal: Thank you for being here. We would not be here if it wasn’t for you, and I just wanna thank you for being so open and making this podcast happen to help other families. Lindsey and I met probably about a year or so ago. And I had never heard of PANS/PANDAS before. Lindsey shared her story with me and told me about just the experiences of what she’d gone through, and then also the incredible work that she was doing to after advocating for her children, which we’ll hear more about today.
Advocating for other families, other parents, other children, and what you have done to help other people is incredible.
Lindsey: Thank you. I appreciate that. And, uh, I also think you may be giving me a little too much credit, only because it’s been very clear to me how this community, uh, not only the PANS/PANDAS parent community, but this local community of ours here in northern Indiana has stepped up where there are people that really frankly, do not have skin in the game, do not have a child with pans, pandas, and have stepped forward like federated media, like legacy heating and cooling.
Um, but also just. The people within those organizations and just people in the outside world, um, have taken such a huge interest because so many people have children that they just love in their lives. Right? Yeah. And just learning about this new thing, it’s been really magical to see, um, strangers come alongside one another to do some pretty cool things.
So kudos back to all of you, and thank you for having me.
Krystal: Well, thank you. And thank you for being here. Uh, you started this though, so we, we will give you the first credit and we’re happy to join you along this journey and to be a part of helping. Other families, other parents, other children, getting the help that they need.
So thank you. Um, so Lindsey is going to be joining me as co-host for a lot of our upcoming episodes, but today the focus is all on her. And I really want to take the opportunity because Lindsey spent so much time helping other families who are going through Pans or Pandas. She’s truly an expert and I think it’s important for our listeners to know where that expertise comes from.
It comes from experience because you, it’s because you have two children with PANS/PANDAS and had very different experiences with both of them, um, because knowledge is power, right? So I’d like to start back from the very beginning and my first question for you is your son Brady was your first child who was diagnosed with PANS/PANDAS.
When did he first start exhibiting symptoms? And what did you think was happening at that time?
Lindsey: So I love that you asked that question because this is one that, um, is a, a trickier one for parents. Uh, they say for pans, pandas, you must have an abrupt onset for the diagnostic criteria, which means, you know, something happens where it’s, it’s, it’s not a gradual over a year’s time, things come on.
Um, however, retrospectively, a lot of times parents will note and clinicians will see, uh, that. You miss early signs as a parent. You have, especially when you’re dealing with children, going through huge developmental changes at a very rapid pace, right? So you might chalk something up to a phase or oh, they’re growing so they’re really tired and they’re really exhausted.
Or kindergarten really has been a tough transition. Or, you know, all the different things that as human beings we like to categorize into clean boxes. Um, so Brady actually, we know. He, the, the mechanism was turned on when he was four, when he had a case of strep that his only symptom was a very enlarged lymph node on his neck.
Um, no other symptoms. A lot of these children, they estimate about half of them do not show typical symptoms of strep throat, so you won’t probably see an actual complaints of ‘my throat hurts,’ or they won’t get a fever, or they may be completely asymptomatic. Um, in Brady’s case, a lot of times he was asymptomatic, but this particular time when he was four, he got, um, a very enlarged lymph node on the left side of his neck.
And of course, um, as any mom would, I was a little bit panicked and I took him to the doctor and they said, well, let’s swab him for strep. Swab him for strep, gave him an antibiotic, you know, go on our way. Um, it was after that strep infection that he had a, uh, a pretty deep swing of anxiety. That was the first thing that we really noticed.
Um, he did not do a good job. I shouldn’t say he didn’t do a good job. He was really struggling with transitioning from one activity to the next. And again, you’re dealing with a 4-year-old, you’re like, okay, well this is really hard. He doesn’t wanna stop doing the thing to do the other thing. Um, a separation anxiety.
But as PANS/PANDAS goes, once your body has the trigger and. You have the inflammatory response to it, then your body comes down off of that inflammation. In the early stages, when it’s a little bit more, a little less chronic, a little bit more acute, um, your body, you know, will come down off the inflammation and you seem to appear back to normal.
Right? So as a mom, my 4-year-old has these couple weeks of, of difficulty, and then, oh, well it looks like he’s better. Must have been a phase or something. Well, fast forward to first grade, three years later. The flares from triggers had become so bad and his symptoms had not only increased in [00:06:00] number, um, but also increased in severity to where I could no longer explain away what had happened to my child.
So it seemed very abrupt in that his symptoms got really bad really quickly and then more came on. And it wasn’t until we went out to see Dr. Latimer at Georgetown University. She’s a neurologist. She had us bring all of his medical records, we did all sorts of, um, qualitative objective and subjective testing.
And it’s a clinical diagnosis that she was able to gather from the information and from his medical history. And she did look at his growth chart and she looked at his sleep and all of the things that we had record of, and we realized that he was actually, the mechanism turned on when he was four, but he was diagnosed at age seven when he was in first grade.
Because of, again, more symptoms coming on that were definitely, they alarmed my husband and I to the point where I thought somebody did something to harm him in some way. [00:07:00] And I started to see a therapist to better understand how to help him through emotional dysregulation that he was experiencing. And I can tell you about all of those symptoms.
Um, as you ask, I wanna make sure I’m being respectful of the questions that you ask. But the important point is we were diagnosed at age seven. I thought at the time onset was age seven, but onset was actually age four. Because I had explained away so many of the symptoms that would have had, I known what PANS/PANDAS was, I would’ve maybe had a little bit of a green light moment, but because I had never heard of it and I didn’t know to put those pieces together, I didn’t even know what to bring to the table to my pediatrician or a therapist and say, Hey, it looks like he may be dealing with these things.
I saw no sequencing to any of those symptoms, that they could play a role together as a smaller part of a greater thing, like PANS/PANDAS.
Krystal: Yeah, absolutely. And I think that makes sense. I mean, as a mom of a toddler, it’s so easy to explain those things away. And kids do go through separation anxiety and go through bouts of clings and things like that, and it seems random, and a lot of times it’s with a big developmental change.
Or like you said, going to kindergarten, anything like that. It is so easy to explain those things away because for most of their lives, that’s been the case. Mm-hmm. So what did you, when did you first start to say this, something is wrong here? Mm-hmm. We need help to go beyond and say what the answers that I’m getting are not enough.
What was the. I guess trigger, for lack of a better word, what was the trigger for that? What made you feel that way?
Lindsey: So I’ll start by saying, one of the biggest reasons that I invest the time that I do in helping families with this disease is because I am so aware that my family is one of the few lucky ones.
And what I mean by that is I did not search for a diagnosis for years. I did not go misdiagnosed for my child. From massive children’s hospitals and other organizations that I’ve worked with enough families to see enough, frankly, horror stories, to know that, um, not everybody has the straight path that we were given by God’s grace through a friend.
Um, it was 2018. Um, I’ll, I’ll rewind to say, when he was four, we were at a family wedding out of town. And for some reason it was the end of his kindergarten year. It was the last week of school. And um, we had, my cousin’s child was babysitting our kids in the hotel room while we went downstairs to the reception of the wedding.
We were all in the wedding. So he had been without a nap that day. It was the end of kindergarten, and he was basically a wreck that day. Anytime he wasn’t around me. And that was kind of odd because. Brady of, of the three of our kids, is the most, just even keel by nature. And so I found it unusual that that night when I went to check in on him, I put him to bed, he clung to me like a koala.
Like he just could not let go of me. And he was absolutely hysterical. And I, again, you think, okay, we’re in a, we’re in a hotel. He’s with not his mom all night. Uh, he’s tired. It’s been a long day. It lasted for a couple of days. But again, you know, mom of toddler, you would understand that, you know, when they’re at those ages, anything is a big deal.
Absolutely. So that went away because symptoms of PANDAS and PANS will wax and wane. So you’ll have the trigger symptoms will go better, go get worse, and then they’ll get a little bit better as the trigger and the immune response starts to subside in the body. Well then you have first grade, it was January, February.
I’ve later learned from a clinician that. September is his busiest month, and then late January, early February is a busy time of year because everybody goes home, gets with their family, does all the holidays, summer break, everyone comes, you know, back to school on those two months and then spreads strep and other infectious disease.
And then, you know, a couple weeks after that these, these new symptoms start to emerge in some of these kids. And so he, like many other kids who have pants, pandas. He ended up late January. He just showed, he just seemed like as a mom, he was just off. Like he woke up one day and he was just, I, I could tell you, he, we were all in the car getting ready to go to school, and I will never forget this.
He had a yellow soccer ball. We pulled out of the driveway and I’m starting to go down the road and Brady said, mom, I forgot my ball for recess. And so I said, okay, I’ll go back in the driveway, go on in the house and get it. And he wouldn’t get outta the car. I thought this is weird. And he said, can you come in with me?
And I said, buddy, I had two other kids in the car. It’s a snowy morning at that time I have like, you know, a 4-year-old. And so I was like, just go in the house, run in and get it. And he was so scared to go in the house ’cause he was scared that I was not gonna be there when he got back out the door. So it was what I would’ve called an irrational fear.
Like what are you worried about? When have I ever, you know, left you in the driveway when you ran in to get something?
Krystal: And that’s not an age appropriate irrational fear. Right. Because I’m in 2-year-old, two, two to 3-year-old right now. Good point. Everything is an irrational fear. Right, right. But that is, that is a very bizarre for that age, especially irrational fear. And he’d never been like that before. Right?
Lindsey: Yeah. So it’s, he’d never given me any precedent to think that. And you made a good point though. Imagine if he was four, imagine if he was two with this onset. Now of course, he wouldn’t be going back in the house to get something on his own, but the muddy. Water comes when that could be an age appropriate response.
So I do tell people, just anecdotally side note, if you start to suspect something, just keep a calendar, keep a journal, because then you’ll start to see patterns emerge and you’ll be able to follow the symptoms. But yeah, so that was my first was when he was in first grade, January, didn’t wanna go back in the house.
He started to decline, um, invitations to go to birthday parties because I wasn’t gonna be standing at the birthday party. Um, he became very, very, okay. So again, my harmony child would come home from school and he would go to his room where he would sit between his bed and the wall and just sob uncontrollably.
And that’s when I was like, okay, telling my husband, he came home from school and he just cried nonstop. And then when I would ask him what was wrong, he would say, I don’t know what’s wrong, or I hate myself, or You guys hate me, or You don’t love me. I’m such a baby. Why do I cry like this? And it would go on for a long time.
And I realize now, and as I’ve helped more people, that it was, he was holding himself together all day long at school, all day long. And then he would come home and he would be able to just be safe and release that emotion. There are a lot of children again. Not our experience. Plenty of children who upright, you know, just deny school, they suddenly won’t go to school.
It’s a giant battle. They cry the whole time they’re at school. And this could be a high schooler and this could be a 5-year-old. Um, they, they have a lot of school refusal. In Brady’s case, he would come home. He was an absolute wreck. We knew at bedtime when we would start the bedtime routine that, and this was in a matter of like days and weeks, that this stuff would just start to stack on itself.
Um, when we would ask him to brush his teeth, game over, brush your teeth, take a shower, couldn’t get him in the shower, but then once we got in the shower, couldn’t get him out of the shower. Once we got out of the shower, we had a lot of aggression. A lot of what they call emotional ability, which is emotional dysregulation.
You’re happy one minute, the next minute for no real parent reason, you’re set off completely. Um, that was our biggest thing. Dr. Latimer called it raging like he seemed to be raging. Um, a lot of times people will notice dilated pupils. What I think, and I’ve said this in the, the previous podcast that we did on Surviving the Flares, is you look at your child and I, every parent has some version of this comment.
You see somebody looking back at you that you do not recognize there’s a blankness or, uh, it’s like a turmoil or a vacancy. It’s, it’s one of the two. It’s like they’re completely gone or they’re completely a Jekyll and Hyde from what you. Have known of them for their lives. So all of these things start to happen in one night after again, the whole family is disrupted by a horrible bedtime routine for an hour, an hour and a half.
We don’t know, do we, do we show compassion? Do we kind of lay down the law and create boundaries? Like you become a, a version of yourself where you’re tiptoeing around everything because you’re just trying to keep the peace for the family. My husband came down and he’s like, something’s wrong. And I said, yeah, something’s definitely wrong.
And then the question becomes, you have an already terrified kid, right? He’s scared of everything at this point. And how do I now probe him to figure out if somebody in some way harmed him without adding fuel to the fear? And what are we doing as parents that have quote. Correct him or how are we mishandling him in some way?
Is it the way that we parent is, you know, there are a million ways to discipline or not. You know, do we use consequence? Do we, you know, let them lead us with their emo like you, you go through all of the things, right? So we started to see a therapist to understand how to best help him through these stages.
And we do all of this cognitive stuff. And it wasn’t until March when a friend of mine who I had done a bible study with. Happened to be volunteering as the school nurse on the specific day that his older sister went home with strep. And she and I were talking in the hallway and, uh, one day after school and I was telling her about these symptoms and her daughter had, has PANDAS.
And she said to me, gosh, you know, you’re telling me all these things about your son. Have you looked at strep or has he been sick lately? And I said, no, he hasn’t been sick lately at all. I can’t figure out what’s going on. And she is very bright and she did the, the kinda the math in her head and she said, I was volunteering at school on March 9th or, you know, she didn’t necessarily say that day, but she said, I sent, I sent your daughter home with strep that day and was that positive?
I said, yes, it was, it was a positive test. So his exposure to my daughter was really what threw him off the deep end. ‘Cause he got really bad in early March. Starts to stack. Starts to stack. And then early March we’re starting to have conversations about, okay, we need to get into the therapist. We need to be looking at maybe the bigger picture here is something going on.
I did not waste any time I went home. When she told me about it. She was kind enough to send me, um, a lot of articles. Her husband is an MD, she’s a physician’s assistant who has retired to take care of her kids at home, but who happened to be volunteering in the health office once a week during that time.
And the more I read and the videos that I watched online from Dr. Slavic, Elizabeth Latimer, the PANDAS Network, um, Neuro Immune Foundation, Aspire, those are all really great sites to go just get, you know, you can go really deep or you can stay bird’s eye view. And I knew when I watched a couple of the videos I saw in the case studies shown in these presentations, my own son glaring back at me.
So I immediately booked a flight and by June we were in Washington, DC uh, with Dr. Latimer, getting a diagnosis, came home with a diagnosis, um, and then started treatment and all of the things that we needed to do. But, you know, it was really, I remember sitting in my son’s bedroom. Uh, while he was at school.
So torn up by the ambiguity of all of it. And it was before we had a diagnosis, but it was so disorienting and so, um, not only intimidating, but also dreadful as a mom to feel like this thing has wrapped, something has wrapped itself around your child and you, you can’t even put your finger on what it is now imagine.
Being a mom like many are and or dad or even a grandparent who’s very involved, going to the doctor saying Something’s seriously wrong here, and being told, oh, well that’s controversial. Or, oh, that’s, that’s, that’s not really a thing. Or maybe a, a very well-meaning doctor who doesn’t know what that, what Pans, pandas really is.
Maybe they’ve heard of it. They did like. Three hours on it in med school, I was lucky that I had a clear path because I had somebody who knew me personally guide me. But I just, I, I, I hate to say, I wanna give a shout out, but I want to just let people know that are listening that I see you and I’ve, I have seen you and I hear you when this has been years in the making.
I mean, I, I talk to parents who they have 22, 20 3-year-old children who’ve probably had this for 15 years, and they’re just now getting a diagnosis and getting better. Because they’re getting the diagnosis, they’re getting treatment. It’s not too late. We just had a really blessed, very fortunate experience in getting a diagnosis that not many people get.
Krystal: Yeah, absolutely. And that’s incredible. And it is incredibly lucky. Mm-hmm. And that’s the hard part about this, right? For so many families, is that it’s a disease that’s not very well known. Mm-hmm. That is not. It is accepted by medical professionals or is understood by a lot of medical professionals, and to go through and go to your pediatrician and say, I think this is wrong.
I think something’s wrong with my kid. And to be, oh no, everything’s fine. Like how it makes you feel crazy. Mm-hmm. Oh, yeah. It makes you feel like something’s wrong with you then. Mm-hmm. Or like in, I think every parent goes through what you talked about earlier of. Am I doing this right for my child? Am I parenting the right way?
Am I using the right form of discipline or the right form of, you know, the right, right form of leadership? All of these different things that we think about. Am I setting boundaries well enough? Am I not setting boundaries well enough? Um,
Lindsey: and my child’s like blowing up our whole house in terms of the unpredictability and now they have siblings, and then what does that look like for the sibling?
Right? It’s like this big thing.
Krystal: Yeah. Yeah. How did your other children react? Especially during the hard flares. Are you okay with talking about that?
Lindsey: Yeah, yeah. Uh, um, I’ll say again, God’s grace type of thing, they are, my first two are Irish twins, so they’re 12, well, almost Irish twins, 12 and a half months apart.
So for all intents and purposes, like they basically live life as twins, and our next child is not quite two years younger than my middle child. And so at this particular time, right, you have a 7-year-old, an 8-year-old, and a five-year-old. Um, it was very confusing, I think would be the best word, because of their ages.
It was hard because, I mean, we were confused for one, but at bedtime they almost, um, they almost became. Used to it in that it was like, oh, okay, well par for the course and I’ll, I’ll mom, I’ll just go lay down in my bed. You just come in when you’re ready. Right. So like, we have one, my, my, my daughter is very, very self-sufficient and I do believe maybe one of the silver linings, um, maybe that her self-sufficiency has been a result of having to be self-sufficient to some degree.
And I feel sorry that she’s so self-sufficient because self-sufficiency was probably a. A motive of self preservation as well. Absolutely. So I mean, I, I deal with that as a parent and I, and I say that lightly, like I don’t deal with a lot of things that a lot of parents do when their children are. So symptomatic and so severe, and they have other children who also need them a lot.
You know, we had our, our 5-year-old at the time, not a great sleeper anyway, but bedtime again, that’s when he got really, really bad at night. So bedtime routines, it was, it was really, it was really hard. And a lot of yelling from Brady’s side and I’ll, I’ll be really honest, my metamorphosis as a parent, I thought it was when I had my kids and then I realized it’s when they came down with pandas that I have learned.
So much about pivoting and realizing that, yeah, I’ve made, I’ve, I was disciplining him hard sometimes thinking this is a, this is a battle of the wills and this is how we’re gonna do things in my house. And I, I still try really hard to give myself grace and say. I know better and now can do better, but I did not know better then.
So I, I worry that the siblings were not only frightened by the, the loud behavior, the aggression from him, because as siblings too, they knew the real brady, right? They knew the even keel sensitive guy who wasn’t a screamer, wasn’t a yeller, wasn’t a kicker, wasn’t, you know, coming home from school irate.
Um, so it was disorienting for them as well. I would say what’s really amazing is that, and, and I do encourage the parents that I work with, we all have to do what’s comfortable for us, but we were very careful to name what was happening, to give a name to this disease, this condition, and to help Brady to identify that this is something that happens to me.
This is something that happens to me and. I’m really doing a great job of getting up every day and fighting back, and I think that giving that a name and giving it a place and, and making space for the condition in our family dynamic. Now we have, and again, we’ve been rehearsing this for seven years, but we have a dynamic where if there is a flare in the house, they’ll look at me and say, mom, you think this is a flare?
And I say, yeah, this is probably a flare. You know? And even now they don’t even need to ask it because if we’ve had illness in the house or if there’s been exposure and this stuff happens, it’s just become a, a kind of a new normal and the flares, because we have had appropriate treatment, not even remotely close.
And we can get into that at different time, but they will now. Show such empathy for what he’s going through and they know to just be gracious and be supportive and be loving and kind, and know that, yeah, this may be a day where mom spends a disproportionate amount of time with one of us versus the other, and I’ll have my time too.
And as a parent, I’ve given the advice to. Make sure you make dates with your other kids. Schedule one-on-one time with them. Let them know, hey, this is one of those days. It’s just gonna be a day that we have to fight the PANDAS bugs and like whatever you need to create a language around. But the silver lining is that they look at people and they see that there’s a lot more than maybe meets the eye.
And so even with their own family and their own home, we can all have days, pans, pandas or not, where we just need a little more TLC. And, um, so they’ve adjusted to that and, and that’s what, what they put out into the world. But it was not without its challenges early on. I mean, I will tell you my experience was, was very lightweight compared to, I have friends in the pandas world who they get their kids, their, their siblings go elsewhere on like really bad flare days.
They spend the night at grandparents, they have iPad rules that go out the window and they let their kids watch a movie on their iPad in their bedroom while the Pandas child is flaring downstairs. You survive this as a family and you sometimes bend what your rules maybe would’ve been considered before, or you find ways to pivot.
But there is a lot of post-traumatic stress disorder, not only for the parents, but also for siblings. And again, I don’t have that experience. To the degree that a lot of the families that I’ve worked with do. And what’s beautiful though is that I can call up a lot of these families when I have a new family that comes into our little community and they have the similar perspective and they have similar shared experiences that now I can get this mom on the phone and she’ll talk and they’ll talk about school ref refusal, or they’ll talk about what to do with a sibling when they’re this close in age or that close in age.
You have enough families in this community. There’s a lot of parallel and a lot of overlap. And not only the experience, but also the, you know, the age makeup of the children. And so we’re able to really triage people from one family to another when they need bits of advice from each other.
Krystal: That’s incredible.
Amazing. Because, I mean, nothing is more valuable as a parent than to know one to be seen.
Lindsey: Mm-hmm.
Krystal: But then two, to have advice from somebody else who’s gone through it. And who, who can say exactly what you’re going through. Mm-hmm. That’s incredible. Wow.
Lindsey: And can give you the permission to let go of what you thought it should have been like, or how you are being told you should be parenting through this to give you the permission to say, Hey, listen, right now, you just need to get through this.
If, if they’re going to refuse school on a Wednesday. Maybe let him sleep in for three hours and maybe try this or try that, but just to give you permission to not be so burdened by what you believe the expectations of society are. Because again, if this was a broken bone or if this was cancer, if this was something that people understood more, there’d be a lot of grace given to you from the outside world.
But when you’re going through something that’s a bit cryptic for other people, you need other panda’s parents to provide that support and provide that advice.
Krystal: Yeah, absolutely. Well, otherwise you feel. Like a failure. Yeah. I’m sure. Because if, especially if you have other people in your life who are saying, this isn’t real, you’re not doing this.
Right. This is a you problem. Yeah. All of the myriad of things. Yeah. Um, and I can, I can only imagine how difficult that would be to feel all alone in that. Mm-hmm. And so being able to connect and that’s, I mean, that’s why this podcast, I think is so critical and why we did Surviving the Flares. And we’ll talk more about that too.
Um, but. It is just the community is, is so helpful. And there is a village here that is willing to help
Lindsey: a village that, I mean, we’ve had people on some of these groups that are like 3:00 AM call me, do whatever you, if, if you are in a jam, I have my phone by my bedside. Like there are the, and it’s a huge group of warriors anyway, right?
We, we’ve had to be tough. We’ve had to get strong. We’ve had to search for our own answers. But then when there’s that sense of. Hope and there’s that sense of nurture that, you know, we all know we have to be pioneers. We all know that we have to advocate for our kids and maybe be the loudest voice in the room, but sometimes we just need a quiet voice next to us to say, no, I’ll sit on this bench with you and I get it.
And to be able to really get it and to know that the person next to you that’s on the phone has lived it is invaluable.
Krystal: Absolutely. Absolutely. Wow. So let’s go back to your story. Mm-hmm. Um, so you got your diagnosis. How did Brady, how did that impact Brady? Did that help him to have that diagnosis? And then talk a little bit about from diagnosis to treatment.
Lindsey: Yes. So huge help. I think it helped not only Brady, but it helped all of us. Um, but to answer your question about Brady, again, it goes back to. This is something that not even the parents can really wrap their mind around. So imagine being a 7-year-old experiencing this immediate sense of dread and, okay, so your basal ganglia is inflamed and it’s basically the most reptilian part of your body has been hijacked.
The fight, flight, or freeze is in full speed. That’s terrifying as a child when you have this sense of. My Brady calls it his gut feeling. He’s got, he gets this pit in his stomach. That’s his first indicator that something is off. And he, you know, he gets ticks, he gets, um, all sorts of OCD kind of doubts that, that he has to really work through.
We’ve done a lot of therapy for that. Um, but when he was diagnosed for somebody to look at all three of us, my husband, my son, and I, and say, I know what this is. This is not something that is who you are. You’re not choosing Brady to be difficult. You’re not choosing to be sad. You’re not choosing to need so, so, so much sleep and still be tired when you wake up.
You’re not choosing to be antisocial or to be, um, highly emotional for the first time he was able to be told. Your brain is, um. The way that she explained it to him was really sweet. She said, you have all these soldiers that your body sends out when you have an immune response to something. And sometimes the soldiers do the right thing, but other times the soldiers don’t go where they’re supposed to go, and they kind of go rogue and they fight your brain.
So for him to have a story of what was happening inside of him, he could now separate the symptoms from who I am. Wow. And that he, and I don’t, and I’m sure every kid handles it different. I have said to a lot of parents. I highly recommend that. And when they have done it, they have also just noticed a lot of empowerment that their kids feel toward being a part of that process.
But Brady has been a huge part of his treatment process. He’s, we, we had to choose early on a lot of the things, but now, you know, he’s almost 14 years old. He’s a huge part of deciding when the therapies that we do are needed when they’re not, how he’s doing. He self-reports on a scale of one to 10. He’s created a ton of intelligence around not only his emotions, but also his physical state.
So it was a very good step in the right direction. Getting the diagnosis from Dr. Latimer. The hardest thing that we did, and I would still maintain the most difficult thing that Brady had to do for his treatment was. We are in the camp that goes, and I’ve been recommended this by two doctors, well, three doctors actually, two neurologists and, and a developmental pediatrician who knows PANS/PANDAS very well, Dr. Kovacevic, uh, to get the tonsils and adenoids out. Um, there is science on both sides of that equation, and really every family has to do what they think is best between their medical professional and themselves.
But we were diagnosed in June. We already had a tonsillectomy and adenoidectomy scheduled for him. Uh, for, for sleep reasons, because we thought that was probably part of it as well, right? We think we’re not, they’re not sleeping well, so of course they’re emotional. Actually, your REM sleep goes down quite a bit when your brain is inflamed. So it was mostly PANS/PANDAS. But for, for the purpose of this story, we had a tonsillectomy scheduled in July.
So a month later you gets a tonsillectomy. Um, the tonsillectomy is hard because nobody wants to have their kid go to surgery. Of course, that was, that was tough for me. Um, but also sometimes these children will flare a bit after the, just the trauma to the body from surgery. Uh, so he had about two to three weeks of a flare, but, um, they, Dr. Latimer put him on an immediate dose of, uh, augmenting, uh, pretty, a very good treatment dose for 30 days. And, uh, we brought him home from that, uh, appointment. And for some reason, my husband and I had to leave town three days later. My parents had him overnight. And my, my dad especially, he’s a bit of a skeptic.
He’s, he’s an attorney. I think he probably comes by that naturally or has educated himself to be such, but they called and said it’s been three days and he’s back to himself for, for a large part. And so the Augmentin helped tremendously. Now, that is not true of every child is not true. Every kid does not do well on augmenting.
You kind of, I tell parents everything has nuance to this equation. Um, every family’s gonna be different, every child, every clinician, there’s usually not a quick answer. But for Brady augmenting couple of days, we probably noticed a 60% improvement from where we were before the diagnosis, which was really bad.
In, in my, you know, R 10 out of 10 was R 10 out of 10. It’s, it can’t be relative to other people’s. I know R 10 out of 10 might be six out of 10 for some people. He did much better, got the tonsillectomy and adenoidectomy again, not looking forward to that, but I am so happy we did it. Dr. Um, Latimer said at the time that there was a report of 85% incidence, reduction of strep.
So, um, you don’t know. Certainly we wanted to get away from any chance that there was going to be strap, because that’s what started this all in the first place. Um, and then after that. We, uh, were very vigilant. We had a plan with the school to not only support him emotionally and behaviorally, but also to support his needs if he misses a bunch of school, or that school lets us know when there is strep in the classroom.
Because Brady does not normally have symptoms of strep that I could pick up on at home. Um. Especially during that time as a youngster, he doesn’t even know how to articulate when a flare’s coming on. So when we were had having exposures to strep at school, I would know to go get him tested. Sometimes he would come back positive with no symptoms, sometimes he wouldn’t.
Um, and we were very careful. It wasn’t until four years later that we decided to pull the trigger on Immunoglobin, um, IV therapy. So basically they take. Good immune cells from many, many, many donors. They spin them out. There’s a serum that then gets infused into the bodies of these children to reset the immune system.
Basically, we did that in 2021, um, for the first time, and he really did very, very well. He got strep. You were not supposed to get strep after, for, you know, eight to 12 weeks. You should try to really keep your immune system at rest. And this was post COVID. He got a ton of strep. He still did well. So we’ve, we’ve been on that journey.
We did another IVIG treatment, um, earlier this year and he is doing very, very well, living a completely normal life. And I say to parents that I talk to today, if he’d never got better than he is right now, we have some lingering. He says, ticks are probably the biggest issue and restless legs. And this, this feeling that he has to move his arms and his legs.
Sniffing ticks. Um, he’s, we, we are very selective. Like we don’t get the flu shot. We do get his other regular shots, um, and I know that every family has to make their choice on that. But the flu shot actually, um, again, doesn’t do it to every kid, but for him it really increased his ticks for a solid, like three months post vaccine.
So we just kind of found our routine of what works for him. Um, I am doing a little bit more digging with some immunologists. Um, and we are, you know, willing to pull the trigger on more IVIG when needed. But if he didn’t ever improve from right now, we would be thanking our lucky stars for the condition that he’s in.
So there is plenty of hope. Um, a lot of the kids, all of the families that I’ve worked with that have sought treatment, have seen improvement.
Krystal: Wow. Mm-hmm. That’s incredible. It really is. What, what does it feel like now looking back? And you look back to the beginning and you look back to the flares and you look back, and especially being able to connect to the dots now for those three years where you had no idea.
Mm-hmm. Um, what does it feel like?
Lindsey: It’s, uh, it’s, it’s kind of a double edged sword, right? So I feel, I think I have, um, I think, what is my therapist called? A trauma response. Like, I think a lot of the, the, um. The work that I do with people is a part of my own healing. Uh, so in that way I think it’s not completely altruistic.
I think there’s some self-serving of when you can help a family who is standing where you stood, and you can truly feel viscerally what they’re experiencing as parents who are deeply concerned for their child, and, um, deeply concerned and also completely at a loss of where to even begin. Um, you, you feel a lot of, of pain for them.
Um, and I will say I feel very grateful that he’s made such huge gains. But I had a mom who sent me a video about a month ago, and she sent me a video of her child and she said, is this normal for a PANDAS kid? And I, I couldn’t believe how. Um, how physically affected I was by watching the Child in a Rage episode.
Um, I felt like I was there again with my own child. So I think that, you know, we get through it as families and we get through it as parents and as a team with our child. And also I think it’s an important thing to notice and recognize that this is a traumatic experience for, for us too. Um, and sometimes you.
Get through the things and you, you, you know, there, there’s a really cool story about buffaloes. I don’t know if you guys know this, but I don’t even know if it’s true. It could be complete. Yes. I don’t know. But there is this, um, this picture going around social media where it’s a buffalo and he’s got icicles just hanging from every fiber of his fur and he’s in a blizzard and he’s looking very strong, right?
Like buffaloes, or bison, buffalo. Whatever. And, um, it’s all the same to me. Yeah. Okay. Thanks. Me too. And, uh, it said on this caption that bison are the only animals that instinctually run into a storm. And the reason that they do that is because, you know, survival of the fittest, right? If you run through the storm, you’re not constantly trying to outrun the storm.
You get through it faster if you run at it and run through it than if you’re trying to outrun it in the same direction. And I felt like that was a good analogy for how I feel post. Yeah, I shouldn’t say post experience, but as we approach remittance, hopefully, yeah. Is you run through the storm, you get through it, you can do it with a certain degree of stoicism if, if that’s your personality and that happens to be mine or you just do the things that need to be done, my recommendation to other parents would be, at whatever pace you need to do this, do it at your own pace.
But please don’t forget that when you get to where you maybe can breathe a little. To reflect and take time to heal yourself as a parent, because it can be very, very triggering and it, it’s actually, it’s traumatic. So, I mean, I know people who have done EMDR, um, which is a way to work with a trained professional to integrate your emotional and your logical brain so that you don’t have that actual physiological response when somebody’s cry, takes you back to the same sound that your child’s cry sounded like, or the look on their face looks like the way your kid looked.
Um, so in terms of where we’ve come, Brady is doing beautifully. And also he, he loves, I mean, he loves that I’m here. This is all with his permission. He loves [that his story’s being told because he’s been able to see in our local community how many kids have gotten better before his eyes because they’ve learned about pan’s, pandas, and they’ve gotten treatments.
And he even, we had one family that we worked with. Absolutely wonderful family. Um, we did IVIG together on the same day and Brady was so excited because he knew that the person who was doing IVIG alongside him was scared, but he got to see him that morning and he got to just say hi. And like there, there’s a brotherhood and his sisterhood even to the children.
So not only the parents have this sense of community. Um, so the children have a sense of community, but then also, you know, I’m on the other side of it now. I now have. 30 families, 40 families that I can reach out to. We’ve probably worked with 50 or so families and some have gotten healing and have, have gone on their way, maybe moved away or, um, you know, their way of healing is to not look back.
And then we have some families who want to stay in community and they want to help other people as well in their own ways, um, that I do get to see every day. And, um, so I’ve gleaned so many friendships from this. Um, our children have become friends and. Um, I just feel a real sense of not only community and, um, relief, but also a sense that I can use my journey to become the roadmap for the next people.
And it’s really neat because this has become one of those things that, again, goes out kind of like roots of a tree where. Then the people that I work with work with the next five families, and then they work with the next five families and it becomes this big thing. So it’s been really neat to see where this has come to in terms of building a community as well.
Krystal: Yeah, absolutely. And to think that you’re really just paying it forward for the friend that you had. Yeah. Who blessed you with the knowledge early on that led you on a straight path, and now you have the opportunity to do that for. You know, dozens of families that you’ve directly talked to, but through this podcast and through surviving the flares mm-hmm.
Through dozens more, maybe hundreds more of other families and the impact that you and Brady get to have because of the hard things that you guys went through. Yeah. Yeah’s powerful.
Lindsey: Thank you. And how these families are then turning around doing the same while they’re in the fog. Yeah. Right. Like they’re not even waiting till they’re better.
These families are helping each other through the trenches as they’re. Putting their boots on and doing the same thing. It’s really cool. And that’s where, so I wanna
Krystal: kind of tie this up with the flying through the fog, why we chose that name. Mm-hmm. Right. And geese fly through the fog together and they do it in a V formation.
And when the one at the front gets tired, they go to the back and the next one steps up. And that imagery is so fitting. Mm-hmm. With what you are going through and what you have done, and you have been at the back of the v. And you have been at the front of the VI think you’ve spent a lot of time at the front of the V and sometimes you’re in the middle of the V.
Yeah. And that is so critical. Mm-hmm. Um, but you’re in the V together and I think that that is, uh, that’s, that is why this podcast is called Flying Through the Fog.
Lindsey: Yeah. And I think that it’s important to mention that I’m not outta the fog anymore than anybody else because the science is still developing.
Um, we’re in a, certainly a better place. Uh, there is, there are still foggy days. I’m not gonna deny that. And it’s much easier to get through the fog when you have people that you can even just say, oh, it’s been a morning. You don’t even need advice. You just need to maybe have somebody be like, Ugh, I feel you.
It was a morning for me three weeks ago, or whatever, just to have somebody to talk to. Um, the fog is really there in this whole medical field, but the difference in having other geese, so to speak, flying with you, it is. Profound.
Krystal: Yeah, absolutely. That brings me to, uh, a story of hope. So at the end of each of these podcast episodes, we want to share a story of hope.
So the other parents going through the fog know that there is beauty on the horizon. There are good things on the horizon. Even if you can’t see it right now, if that fog is so thick. Um, Lindsey, since today’s episode is about your family’s journey, do you have a fun anecdote or just a story of hope to share?
Lindsey: Well, I think my one thing would be that I think Brady thinks he’s like the mayor of PANDAS world right now. Like, it’s like, are you gonna talk about me today, mom? Like, so I, I would say my story of hope, um, is just watching how he’s harnessed this crappy hand of cards that he was dealt. He’s got a, a, a clustering of autoimmune.
This is not his only one. And sometimes he needs to be reminded that sometimes we’re just instruments in a bigger plan. But, um, watching him derive such joy from not only being proud of what he’s gone through and the scary things, right? Like nobody like these infusions. They put an IV in your arm. That’s, that’s pretty scary for a, you know, 10-year-old kid.
So to see him feel pride. At his resilience and to see him continue to get up and do the hard things, but to see him also feel like me doing the hard things actually has a ripple effect. Yeah. And so he is pretty jazzed about all of that. Um, that’s, that’s my hope. And then to watch him be excited about the hope that other children have.
Like we get pictures from some parents sometimes, like, look how well so and so is doing. We never in a million years thought that she’d be back to school, let alone playing on the soccer team. So I’ll show him those pictures and, um, with their permission, we’ll, you know, share it with our family and just to watch his eyes light up, um, to feel like he’s made an impact with, you know, making lemonade out of lemons has been pretty cool.
So that’d be probably my story of hope for, for our story right now. And there are lots of little stories of hope, but, um, just watching him be really excited about the next kid who’s doing better, um, because they know more.
Krystal: That is beautiful. Thanks. Pretty funny. That is so cool. Uh, you, you and your son are awesome.
That is, that is so beautiful. Um, listeners, we’re looking for more stories of hope to share at the end of each episode. Uh, just like Lindsey’s, it could be a fun anecdote, it could be a short story about something that your family experienced that once you thought was never possible, it could be.
Something like just seeing the hope of, of what your child is going through right now and the excitement that they’re feeling on the other side and the good things that are happening like Lindsey shared. I think that’s so wonderful. Please share your stories of hope with us so that we can share it with other families.
Email it to pandas@federatedmedia.com. You can email a text if you want to do a voice file. Uh, try to keep it under about 90 seconds and we will include it in a future episode. We’ll either read it or play it in a future episode, so please share that. I’m looking forward to hearing those. That’ll be good.
Lindsey: Yeah, me too. I am very excited. I think that there’s a lot of hope.
Krystal: If you’re listening to this podcast, chances are you’re a parent or a loved one of a child experiencing PANS/PANDAS. If you’re currently in the middle of flares, if you’re waiting for a diagnosis or waiting for treatment and you need help, please seek out Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Families In Crisis Mode.
This is the podcast that Lindsey and I talked about earlier. We both mentioned earlier. It’s two episodes. It is a triage piece that can help your family while you wait for treatments. Search for surviving the flares on your favorite podcast app. It is free wherever you’re listening to podcasts. Lindsey, thank you so much for joining us today, and thank you for sharing your story and Brady’s story so courageously to help others.
Thank you.
Lindsey: Thank you for having me. And I just wanted to say to all the parents who are. At the beginning stages of this, there is reason to hope. There’s a beautiful community around you. You just need to reach out. And with treatment, these kids can get better. And I know that it seems like there’s no path out right now, but day by day, minute by minute, um, hug by hug, you will get through it.
And I just want you to just keep chugging along and just know that there’s so much reason to have optimism around this. Yes,
Krystal: keep going. Keep going. Well, thank you Lindsey. Thank you. Uh, I’m Krystal Vivian. This has been flying through the fog. If you’re flying in the fog right now as a parent or caregiver of a kid with PANS/PANDAS come join us in the back of the V.
We’ll help pull you forward so that you can catch your breath. Let’s fly through fog together.
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:
