School Refusal and Doctor Refusal: Understanding PANS/PANDAS Behaviors
This is the transcript of the sixth 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 as always by my co-host, Lindsey Forsyth, a mom of kids withPANDAS. Welcome, Lindsey. Thank you. Thank you. Happy to be here. Awesome. We’re also joined again by Angela Henry, a licensed clinical social worker based here in South Bend, Indiana.
Angela specializes in serving children, adolescents, and families with OCD tics, Tourette’s disorder, anxiety, body focused, repetitive behaviors, and of course neuroinflammatory challenges like PANS/PANDAS. Welcome, Angela. Thanks for having me. Thanks for being here with us. One of the challenges that comes up often for kids with PANS/PANDAS is struggles with going to the school or the doctor.
They’re so overwhelmed that going to an appointment or going to school every day becomes a challenge. And for many kids they just outright refuse. And that’s especially challenging for parents too with the school year. Now back in full swing, we wanted to have a non-judgmental open conversation about this to help you, our listeners, navigate the challenges of school refusal and doctor refusal with your kids.
Um, Angela, I’d like to start with you again. How common, can you talk about how common Doctor Refusal and school refusal is for kids with PANDAS?
Angela Henry: Yeah. I think both of those things happen for different reasons, but I think they’re both very common. Um, when we think about going to school, there are so many things going on with these kiddos medically.
Uh, and part of the medical, uh, symptomology with that is that they might have a DHD type symptoms. Um, they might have working memory challenges. And as I was even thinking through this, I was thinking about doing a, a little, um, vignette kind of thing, a little, um, behavioral experiment on live, but maybe we’ll save that for later if it makes sense later.
But yeah, it’s so common all these things are happening for these kiddos, and so it’s hard for them to attend to the process of school because of all the different symptoms that come along with the neuroinflammatory challenges that they’re having. And then in terms of, and, and we’re not even talking about like the social aspects we’re just talking about in that, those few sentences about the academic needs, but then there’s social challenges on top of it because maybe they’re missing school or they’re having a difficult time.
Um, emotional challenges along with that. And in terms of the refusal to go to the doctor. Sometimes we’ve refer to that as white coat syndrome.
Angela Henry: Where these kids are having to go to so many different doctors and like exponentially many doctors. There’s the PCP, there’s the rheumatologist, there’s the immunologist, there’s the, what other doctors, Lindsey?
Just so, so many different psychiatrist. Special. Yes. Yeah. So many different specialists that they’re seeing that. Um, and, and they could, because of their OCD, let’s say, they could be having a lot of different fears. Um, they might have needle phobias, they might have, um, different things with, um, not only having blood taken, but also blood injections.
And as they see the doctor, they know that it might mean, you know, something, a medical intervention being needed. And so there’s a lot of apprehension that comes with seeing the doctor and having medical appointments.
Lindsey Forsyth: And I think with, uh, uh, the kids, with the doctor, they’ve oftentimes seen a lot of doctors who’ve given zero answers mm-hmm.
Or have not been deemed valuable to these children in their opinion. So they’re over it, their parents are, are stressed out by it. And of course, you know, mirror neurons, right. We can kind of feel each other’s stress in our families. So the doctor thing, sometimes it’s just also a matter of like the dread of one more long conversation that amounts to nothing and repeating.
You have to repeat the story over. That’s one of the things that you, multiple times even a day. Yeah. Like, so you, you go into the doctor that you, now you’re gonna see after you’ve talked to 10 doctors, but then you tell, uh, the nurse at the beginning and she types all this stuff in a computer and then the doctor walks in and they ask you the same questions and you kinda wanna be like, just look at the computer.
Mm-hmm. But, you know, so the kids, especially the older they get, the more they’re over that. And our specialist that we see. Has specifically created a protocol for himself where he comes in, unlike any other doctor they’ve been to. And he like, this is a little bit of sarcasm and a little bit of like, like, how’s your love life?
Unexpected behavior. Right. And it, and it catches people off guard. He actually, part of it is diagnostic. Yeah. For him. But like he knows that he’s seen enough kids to know that. So that’s the doctor thing. But I think even what you were talking about is, you know, even kids, A DHD, working memory, things like that.
The masking that goes on for, I feel like, you know, certainly kids who have, uh, any number of neurodivergence or just needs that aren’t being completely met or recognized at school, but totally typical kids too. This pressure to perform li like when you’re trying to survive, when you’re just trying to get through your day.
We all know as adults, like we have bad days just like everyone else. But on top of that, that dreadful pressure to perform. Then also having to do that in a state or fight or flight. Okay. That you cannot control. This is a very
Angela Henry: good space for our behavioral experiment. Are you ready? Oh, okay. Okay. So no one’s prepared for this.
Like, what’s
Krystal Vivian: going on? I had no idea you were gonna do this, so this is gonna be fun. Okay.
Angela Henry: So just, we’re gonna pretend that I’m, I am a kid with PANS/PANDAS, and, um, in this case I’m gonna use, um, OCD and I’m in school, right? And I’m going to be, uh, we’re all gonna pretend that I am listening to the teacher lecturing or teaching me about math or integers or I don’t know, the Roman Empire or something.
And as I’m doing this, Lindsey, I’m gonna have you come over to my microphone and I’m gonna have you just say some maybe OCD compulsion kind of language, kind of like thoughts that might be coming up. Um, and I’m gonna have you whisper and I’m just gonna still be talking. Okay? So go ahead and do it now.
So I’m trying to listen and I’m trying to listen to what this teacher’s saying, but I’m trying to hear what they’re saying and I’m trying to remember what the teacher is saying, but then I have to do another working memory thing of writing it down. But then as I’m writing it down, I’m trying to also listen beyond while I’m writing the teacher’s continuing to talk and Okay.
Like what is up with that? There are, so I got overstimulated and like I am tearing up hearing that that’s what’s happening to them. Wow. We don’t realize for the kid in school how many things are happening for them. They have to have a working memory. Well, first of all, they’re processing what the teacher’s hearing.
Yeah. They’re having another piece of putting that into their working memory of remembering as they’re trying to write down, as they’re trying to listen as they’re writing down. What did I just remember as the teacher’s going on? Yeah. Oh. And continuing. And continuing. While all these thoughts, impulses, sensations, whatever it might be for that child is happening.
Yeah. At the same time, what the heck?
Lindsey Forsyth: No wonder they’re refusing.
Angela Henry: Yeah. They’re saying, I can’t do this. This is beyond me. I’m having a hard time. They’re waving their white flag. Mm-hmm. Sometimes it’s through actual conversation. I can’t do this. Sometimes it does look behavioral. I’m refusing to go to school or completely shut down in the classroom.
Yeah. I’m shutting down. Or they might become aggressive, angry. Depressed. Any number of things. But that is a real good example of what is happening in real time for some of these kids.
Lindsey Forsyth: And I have a DHD, and all three of my kids have been diagnosed with A DHD and just a DHD alone. Yeah. That makes me feel, and we’re talking about really bad, about being hard on that OCD,
Angela Henry: but yeah.
Mm-hmm. Yeah. O-C-D-A-D-H, adhd, like mm-hmm. Things cognitive, uh, working memory, executive function, memory gaps, all
Lindsey Forsyth: of
Angela Henry: it. All of all of these things are symptoms of what could be happening for any one client and all of those
Lindsey Forsyth: things. And then you have a nervous parent who sent their kid to school with knowing, okay, he’s got a DHD, he’s got Pan Panda, he has all the things, and then they get in the car, how was school today?
Are you okay? Did your teacher say anything? It’s like, oh, 20 questions. You know, they just wanna shut down the parade. Yeah. Yeah. Or not even start the parade at all. Yeah. Yeah. So it’s a real thing, and I wanna say it many times in many podcast episodes, what we are dealing with is a physiological brain under a state of inflammation.
Where the fight or flight center is activated. Mm-hmm. Absolutely. This is not a choice. It’s a nervous system, overactivation, and it’s just wreaking havoc. Yes. I can say that I, I want to acknowledge my child does not refuse school and he never did, so it’s easy for me to say, but I’ve worked with enough families where this has been a, the main issue for their child.
We have other families where the child maybe doesn’t refuse school but refuses, and you’ll probably have a lot of parents in this camp refuses homework or things inside of the school day. All the projects, uhhuh, a long term project is way more daunting. What are those ICLs, I’m too out of it. Where they have practice the IEP tests?
No, where they have to practice their math. Oh, math facts and those kinds of like mad minutes and stuff like that. Yes. So we had one girl and that’s one thing that is because of the working memory and the brain fog and the, the, the panic that and, and the, the math skills in particular, it’s one of the symptoms of PANS/PANDAS where there’s a decline in math skills, handwriting skills, things of that nature.
Um, there was a girl who was getting a diagnosis recently in the last couple years I was working with a family. Since then, she and multiple of siblings in that family have received diagnoses. But her big thing was when math would start. She would talk about how horrible a student she is, how dumb she is.
She would hide under the desk. She would cry, she would throw stuff, and the teacher was like, what is going on? Like,
Angela Henry: so talk about fight or flight and then fight or flight, then put a time, time crunch on it. Mm-hmm. Like, and then tell them they’re behaving poorly and working memory. Mm-hmm. So it’s not that they want to not remember what eight times four is.
Mm-hmm. But there’s things that are happening that are, it’s almost like keeping that information from their brain. Yeah. And then you say you have to do all these things in under a minute. Yeah.
Krystal Vivian: Yeah. That’s a high, and then writing stress situation. Yeah, for sure. That is a really high stress situation. And kids, you know, I think of, I’m a big fan of Dr.
Becky Kennedy. I know that you guys are too. And one thing that I always, I love that she says is that kids don’t wanna be bad, even if they, even if it is behavior. And in this case it’s not. It’s even if it is behavior. It, the behavior is being caused by something and they, it’s communication. Yeah. Every, all behavior is really communication and how awful it must feel to experience that.
But then to hear, well, you’re being bad. Yeah. Or, oh, but you can’t, what do you mean you can’t do this and these kids, well, you can’t have your
Angela Henry: recess. Yeah. Or yeah. Or any number of things. Yeah. That’s a big, now you can’t move your legs and you really need to move your legs and I’m just gonna have to say these things.
Or you’re gonna have to clip down. Mm-hmm. Or you’re gonna, what are all the behavior management, all tactics, all that kill, even before I knew about PANS/PANDAS, the shame, all of that stuff was a big in front of everybody. Yeah.
Lindsey Forsyth: Well, okay. Okay. So that’s one part. Is this the, the pressure to perform and do it while having all of these other obstacles, but there’s another huge component.
That parents need to know to be curious about rather than my child’s just being obstinate. Is separation anxiety when you are in that fight or flight mode is a hallmark panda sign? Not everybody has it, but a lot of kids in some way, shape or form do. And what doctors will say is it can be separation anxiety from a person.
So a lot of times when you’re younger, it’s mom or dad, or it could be separation anxiety from a room that’s familiar in your home or your home. Or it can look a little bit like, you know, I’m an an OCD pattern of something bad is gonna happen to me if my mom is not with me or something bad’s gonna happen to my mom.
Or what if someone breaks into the building? Or like the OCD rabbit holes that these children’s minds go down. Yeah, prohibit them from functioning at all. Depending on the severity outside of the safety of their mom or their dad or within eyesight of them. So imagine child basically being like pushed out of the car door by mom because she thinks that’s what they’re supposed to do, because it’s just gonna snowball.
And these parents have actual legs to stand on when it comes to all of the reservations about not missing school. So we can get to that, but I, it’s not even just about all of the pressure, all of the things going through your mind, all of the timed things. It sometimes can be as simple as I simply cannot leave my home.
Mm-hmm. And that could be for the doctor or school too. Mm-hmm. Mm-hmm.
Krystal Vivian: Yeah. Well, let’s, so I mean, we, we’ll, I let guess, let’s, we’ll get to the doctor refusal. Mm-hmm. But I wanna stay here in that space of school. Mm-hmm. Because we, we’ve talked really heavily about it. Um, and let’s talk about the, when do you know, as a parent, or I guess, how do you advise families on.
When do you push your kid out of the car and send ’em to school? And when do you go, you know what, this we, it’s not working. We, we, we need to reevaluate and we need to do something else. Um, and I get the pressure of like, this is what we’re supposed to do and this is the, well, and this is what you imagined when you had your kids, um, when you gave birth, were you worried for them about it compounding and becoming more of a stress and becoming worse and worse and worse?
So like, how do you. Navigate those conversations. And I guess, what do you advise families to think about when they’re deciding what to do and how to handle that?
Angela Henry: Yeah, and you know, I don’t know. I don’t know if Lindsey and I will have different opinions on this. I don’t know, because I think I really won’t
Lindsey Forsyth: have, I won’t have an expert opinion on it at all.
It, I’m interested to hear what you say, but you’ll have
Angela Henry: an opinion. I know
because I love you and you’re really, that didn’t come up right at all. I just kidding. You’re fine. Um, you’re right too. There’s a, a delicate dance between wanting to be there and be present and give our children what they need. And there’s also a space where yes, we don’t want to make it worse in the long run.
And how, I think that is a good, how do we know? My gut is typically, let’s try, let’s do the things, let’s do some, I guess we would call that exposure and response. We might look at seeing what the kid feels like they can do. We might drive, let’s say it’s, it’s, um, separation anxiety and looking like school refusal.
So we might talk about what can we do, can we drive up to the school? Can we have a way of saying goodbye or having maybe attachment things that help you say goodbye. Like we might have a secret handshake. We might have a, um, an attachment object. Mm-hmm. Maybe it’s a picture of the parent. Um, check in.
I’ve seen like
Krystal Vivian: bracelets. Yeah. Like matching bracelets. Sure. With parents or like, and there’s also drawing a heart on your hand or something. Yeah.
Angela Henry: All of those things. Yes. Um, then we might look at, okay, can we go into school for a half an hour? Can we go to school for an hour? Or we might even do it the opposite way.
Let’s go to school. Let’s see how long you can go to school all day and maybe not go to the last period. There’s lots of ways that we can finagle this, and there’s no right or wrong way, but I think we have to see what the kiddo can handle.
Um, because we don’t wanna give up. I, I have a, a good colleague, um, her name is Dr.
Karen Liam out of Tampa. She’s wonderful. Um, but we’ve had conversations among PANS/PANDAS clinicians, and talking about how we can’t just throw up our hands and say, well, there’s nothing that we can do. And at the same time when it becomes super apparent that this kid is just melting down, they’re just not able.
Then we look at different things. Maybe that looks like, maybe that looks like learning from home. Maybe that looks like half day at school, half day at home. Maybe that looks like I can do my work, but I’m doing it in the nurse’s station and the school is able to accommodate that. Maybe that’s what it looks like.
But oftentimes, maybe not. Oftentimes there are some kids who need to be unschooled. They aren’t even able to learn within the confines of their home because learning online or learning at their own pace is really difficult. And you know, if this kiddo had cancer mm-hmm. Was gonna say that, and they had to take six months off to have treatment, we wouldn’t be giving them a hard time.
Mm-hmm. We would be accommodating. We would be working with what is. And so we have to have that mindset with some of these kiddos who are just not able, it’s not not willing. It’s a Not able,
Lindsey Forsyth: yeah. And I wanna be very clear that I’m not coming at this whole episode as I’m on the side of the kid that doesn’t wanna go to school and here’s why the kids shouldn’t go to school.
I’ve just seen the traumatic impact on the whole family and the child and the child’s wellness when in a flare and it’s catastrophic. Mm-hmm. There’s no give and take. Mm-hmm. And we started the episode, I think, validating what’s happening with these kids. Not necessarily saying every kid with PANS/PANDAS needs to stay home, but like we validated that.
But I, I have a lot of things. It’s a spectrum. It’s a totally a spectrum. Like my kid never refused school. Right. He would come home and cry for three hours. Right. But he never refused school. But I, that’s, and I thought that school wasn’t the issue and it, it was not the issue. I mean, but like I was thinking, what am I doing at home wrong as a parent?
He doesn’t wanna be home with me. Well, no, he was just finally where he felt safe, unmasking. Mm-hmm. And let it all out. Oh. And he was just, yeah. And I was anticipating as the day went on, what was gonna happen when he got in my car. So while he’s just trying to unload, I’m like, Ooh. So I don’t, we’re not saying like all the kids should be given free reign to choose all the things they want.
And I don’t think Angie made that seem that way at all. But as you were talking, I was thinking about a very important part that you said is like understanding what the kid can take and having compromise. Well, a huge part of having compromise needs to come from an understanding. And we have a pod episode that talks about.
Communicating with your family, within your family aboutPANDAS and with the child and what they need. And I would highly recommend you listen to that episode while thinking about this episode, because it’s really difficult to know how to be a team, which a lot of times if the power struggle exists, you’re not being a team.
But if you can team at this and say, you know, depending on the age, of course, personality, all of these things, but in a beautiful world, mom and child, dad and child can sit down with, with teachers say, this is worst case scenario. We have a plan in place IEP 5 0 4, when the child is in a flare, this is the scenario we could be needing these accommodations.
When a child is not in a flare, these might be accommodations. So there’s a lot that you can do on the outside to create safety nets for the child where school doesn’t have to feel like an all or nothing thing. Mm-hmm. So. I have a friend whose child had a safe person at the school that knew with permission from the child, all of the things, and it was, um, a cousin’s cousin to the child, but they could go to that person in the school when they were feeling overwhelmed.
They might be able to call mom every day at 1230 or they, you know, there are a million different ways that you can do it. But having the child a part of that plan and making that plan, one gives them some ownership to where, like you, they say your kids will eat vegetables. If they grow ’em in the garden, the kid’s gonna be more likely to.
Cooperate with any plan that they’re helpful in creating themselves. Mm-hmm. Where they’re being listened to. That’s not collaboration. Yeah. It’s like you have to look at this whole episode with collaboration in mind. Yes. I plug Ross Green. Mm-hmm. The collaborative problem solving approach right now too.
Yeah, yeah, yeah. So, um, I wanted to make sure that compromise was a part of the conversation, but in order to compromise, you have to have communication. And sometimes you’ll think your kid is being obstinate and digging their heels into the ground and doubling down a about school, when ultimately it’s about a thing at school that really makes them frightened.
Like school assembly is super duper loud. Well, gosh, now that we’ve had this conversation, I know school assembly, well just sit out, school assembly, go to a quiet place and read. Oh my gosh. That kid not only feels seen and understood, but. You’ve now taken what you’ve assumed as a parent was the issue, and you’ve dissected it to realize that was actually not the issue at all.
Now, that’s not always gonna be the case, but just the importance of communicating so that your child can be part of the team, can be part of creating that plan and having a part of the conversation with the school that this can be changing. OCD themes can change between fourth and sixth grade. So something that really frightened the child about germs.
In fourth grade, we’ve worked through with some ICBT, with some medication with IVIG. We’ve defamed the brain, but now the OCD theme is a little bit different. And so every year we’ll revisit that, but the child will always be a part of that conversation. Yes.
Angela Henry: And again, be curious because if you go in thinking that, you know, uh, it could be, you might guess, right? Yeah. But it could be completely different. Yeah. Right. Yeah. I have a kiddo that’s afraid of gum. Right. So it could be disgust, right? Mm-hmm. But oh, no, it’s actually mint. I don’t like the smell of mint. Mint makes me feel like throwing up, and I’m very afraid of mm-hmm.
Throwing up.
Lindsey Forsyth: Yeah. Yeah. So like when you communicate with your child and they have communication with you and with the teachers and you know, you with the teachers and, and all of that comes together, it’s less about, well, what’s the hard line of when I know I should be pushing him outta the car and when I shouldn’t?
Because like for my son, once we got through some ICBT about things, then we could move on to exposure and we could say, look, look at the clouds. Like, in fact, I’ll, I’ll say we have a therapist that was working with him even yesterday that was, we were talking about his fear of tornadoes and she was like, look, I just got a thunderstorm watch on my phone right now.
And I just watched him just totally tense up. Yeah, that’s exposure. Yeah. Because then we were able to say, okay, what did that make you feel like? Okay. ’cause it’s not that the thunderstorm is outside your door, it’s just that now we’re thinking about it potentially being a thing. Yeah. So that can, getting out of the car can be a step that you take at some point, but maybe it needs to be part of a bigger plan as opposed to a power struggle.
Yeah. Well, in looking
Krystal Vivian: specifically at like the gum thing I think is really brilliant because it’s like, well you wouldn’t, you make assumptions. Yeah. But if you’re curious and if you’re asking questions of like. Okay, but then what? But then what? But then what, act like a 3-year-old, right? Mm-hmm. Ask the why and keep asking the why until you get to that.
And it doesn’t necessarily make sense. But for kids, the logic part of their brains mm-hmm.
Angela Henry: Isn’t fully formed. OCD is always about the illogical because it’s always about the imagination. It’s always about the potential possibilities. Yeah. Mm-hmm. That may or may not be there.
Krystal Vivian: Yeah. So
Angela Henry: it’s not about what it is or isn’t, it’s about what could be.
Krystal Vivian: Yeah. Mm-hmm. And they don’t, and they can’t, they’re not mature emotionally and socially enough and physically enough to be able to say, well, that’s not, I mean, even as adults, I think we sometimes we struggle with that of like, oh, well that’s, that’s an intrusive thought. That’s not real. That’s not actually gonna happen.
Um, you worry about that.
Lindsey Forsyth: So Angie was just saying that OCD is illogical and it makes you, uh, not always jump to the same conclusions as people who assume your stance would, would jump to. I want to point out also that when you have OCD as a PANS/PANDAS child, you are having OCD coupled with emotional liability, inability to write, um, like dysgraphia, uh, margin drifts, uh, inability to do math.
So imagine having all of those other symptoms that also feed into the OCD illogic to where as a parent, I would think, okay, well that’s an obvious leap from this to that. But what if it’s a kid who knows that they can’t keep their hands to themselves when they get upset, but they also know they wanna be a really good kid and they know that they’re gonna get in big trouble in school.
That OCD all spirals into a tsunami of Ooc D too. Oh yeah. That compounds itself when just even thinking about it. So just remember these kids are not even just dealing with, uh, well, OCD is a huge symptom. They’re also dealing with other things that make the OCD even more s like supernaturally strong, you know?
Yeah. So, um, just a point for empathy for where this child’s mind is and how questions are important because we can’t possibly understand, they don’t understand half the time.
Krystal Vivian: Um, Angie, you mentioned earlier something that I wanted to ask specifically about, and that is the, the concept of unschooling, and that sometimes mm-hmm.
Unschooling might be a solution. Um, can you talk a little bit more about what does that look like? What is, what does that mean and what does that look like for families? Yeah,
Angela Henry: so, so when we’re talking about unschooling, it really could depend on how you embrace that concept. Typically, it is different than homeschooling.
Unschooling is where. You know, you might have a curriculum based on really what the child’s passions and desires are, and there’s really not any standardized testing. There are fewer rules, uh, different ways that you go about learning the learning process. And when we’re talking about, let’s say kiddos aren’t able to learn inside the four walls of a school building, they might move to homeschooling as a next option or partial learning from home, partial learning in the school building.
And so when that is happening, there’s still standardized tests, there’s still guidelines, there’s still a curriculum structure, and some kids are able to learn that way when they have PANS/PANDAS. If not, then maybe we move to something called unschooling. And again, that is just more of a, a looser type of learning experience.
And in my. Understanding that might mean that they might not follow the same grades. Like let’s say we in America start school first grade, right? We start, um, in September and we go through May they, that might be very loosey goosey for the person who is unschooled. So they’re going through education in a much different way.
So it may be extended, their education might take them longer to move through than what we know. Is kindergarten through high school in America,
Krystal Vivian: say, is it, is it more like you’re building the skills and the knowledge foundationally and kind of following their lead
Angela Henry: or, so it is very, uh, child directed. Yes.
So unschooling, we’re really looking at how does this child learn best? How do they feel like they learn best? Like they might learn about, um, gravity by. Climbing trees.
Krystal Vivian: Mm,
Angela Henry: right. Yeah. Um, so it’s, it’s much more child directed.
Lindsey Forsyth: Okay. So, example, I homeschooled our kids during that weird COVID year that followed the shutdown.
And I had a curriculum for math, curriculum for reading, you know, all the things we tested. We, I kept track of where they were making progress, where they had deficits. Um, my whole goal was to integrate them back into school the following year. So we were very, I was very structured. Um, a lot of these children were also very home homeschool.
Like, very homeschool like, right? Yes. And I, uh, not to, I’ll, I’ll come to this other part later, but there, I wanna recognize their parents that can’t do that. They’re working, their spouses are working. That’s not a possibility. However, I have some families that I work with where the child. Is old enough to be home alone.
Maybe grandma comes for three hours a day and they do online schooling where you have a curriculum, you have somebody leading in a virtual class, maybe with other kids on Zoom, maybe not. Maybe it’s just like a video. So there’s some version of that as well. I have a sixth grade family that I work with whose daughter could not just, could not even do that.
Again, if this was a child with a, a disease that you could see and touch and feel and identify with, you’d be like, oh, obviously parent takes off work and you know, they’re living in Ronald McDonald house. Like this is, it can be a severe enough to where it’s some version of that sort of Absolutely.
Modifications need, needs to be made to the family’s life. Yeah. And that might be
Angela Henry: the most compassionate choice Yeah.
Lindsey Forsyth: In that moment. Absolutely. And you’re working on just keeping them having a support in you and helping them get through this really difficult time while you are addressing the physical inflammation.
Via your, you know, your clinician, right? You’re not just doing nothing. Right.
Angela Henry: Right. You’re just, it’s a marathon focusing on something different in that right moment of time or stretch of time.
Lindsey Forsyth: Right. You need, while you are working on healing the body, you need to keep things progressing in some way, shape, or form.
So they decided, okay, we, we made the ch choice with our daughter. We are just going to repeat sixth grade because it’s a, it’s a year where you could go to a new school in sixth grade where they live in, um, like Oregon and we can just have her repeat sixth grade and she can choose to go to a different school.
But we’re just gonna chalk this year up to a year of love and bonding and being together. So they, the mom was like, what documentaries do you wanna watch? Like, let’s make a list of all the documentaries that we wanna learn about. Is it Pompeii? Mm-hmm. Is it drain the oceans where they show you ultrasounds of the geo geography of the bottom, of the ocean floor and like.
The kid, they, they did something right? Yeah. So the kid wasn’t twiddling her thumbs, but they, they had the luxury of the mom being able to do this with the child. But, and
Angela Henry: other people can step in too. You’re preserving the love of learning. Yeah. Because if you’re forcing them into a space where, again, we’re not gonna say not willing mm-hmm.
Because it’s not about that, but where they’re not able. Then they’re gonna really resent what’s happening in that space. Yeah. So it’s preserving relationship, it’s preserving a love of relationship so that when they are more able, they can come back to that space and have a different relationship.
Lindsey Forsyth: Right. But I think that spectrum, that continuum that we talk about between doing nothing and then unschooling and then homeschooling and online schooling and schooling in person. This is a scale that can be moved back and forth depending on the school, the school system, the IEPs in place, the five oh fours.
But also that can be taken onto a micro level by um, the schools in terms of okay, we know. So I’ll just give you an example of my son. He studies his butt off at home. He is a hard worker. Lots of grit has had to be that way because of PANDAS in a lot of ways. He would study something for hours and days at a time and then show up at the test and test taking anxiety kicks in and he’s blank.
Mm-hmm. That could very easily turn into. Um, something that triggers an, a tremendous amount of illogical thinking from him and OCD and feeling like, if this happens, then this, this, this, and this will happen. And then I’m gonna end up 10 steps later blacking out when taking a test. So part of the accommodations that I’m going to talk about this year with the school is we know that this happens to him.
We also know he knows the material. Does that look like he tries to do the essay test? He gets extra time in a quiet space to do it. Can we break it into smaller parts? A lot of these you’ll see with a DHD students too. Can we do it orally? But exactly. If that doesn’t work, is there a way that you, Mr. Jim can have him, can you ask him the questions and he gives you the answer.
You can ask the teachers to do that when you have an actual medical reason that that happens and these kids have medical reasons that it happens. So just see the continuum of like, you can do nothing. Or you could unschool or you could, you know, like there are all these choices. Some may be great, some may be horrible for your own child.
That would work for mine. But then take that to a smaller level and then even within the school day, if there are certain things that are scary to the child or that cause an an aren’t showing what they really do know, then you can see that as a sliding scale as well. Mm-hmm. Because that’s what we’re really after.
Angela Henry: Yeah.
Lindsey Forsyth: Right.
Angela Henry: We’re really, are they understanding the material.
Lindsey Forsyth: Right, right, right. I do think though, as I say all of this, I expect a lot of our kids in terms of trying their best, and I want to make sure that I’m not providing so much scaffolding that when the scaffolding goes away, they flounder as adults.
It worries me sometimes, like I’m, like, I, he also has to experience that he can get through anxiety, that he can take a test. Like it’s a, it is a fine dance. Going back to your analogy, I, I, I, I live it where I’m like, yeah, but like, I don’t want him to think that other kids have to write the essay mm-hmm.
That he can’t do it because he can do it. It’s just we might need a moment to just help him through that, and I don’t, that’s where Angie comes, I’m thinking, thinking about flares
Angela Henry: again. Flares versus, yeah. Non flares. Yeah. Right. So during a flare, chemicals literally might be washing over his brain due to fight, flight, freeze.
Mm-hmm. Anxiety where he can’t recall information that he did know. Versus. If it’s a product of general anxiety outside of a flare, then we probably are going to want to be doing some exposure maybe. Mm-hmm. Maybe the anxiety is he’s afraid he’s gonna get a poor grade and then if he gets poor grade, he is gonna fail and then he is gonna live in a band down by the river.
Right. So we, we wanna be doing some exposures. Maybe we’ll have him do some mistakes on purpose. Yeah. To learn that he can be okay. Right. But that’s not during flare time.
Lindsey Forsyth: Right. Yeah. Well, and I think the other thing to think about is how we respond to what happens down the line for the kid has a lot of play in how they approach it now.
So saying, I’m just gonna just put it out there for all the parents who just feel like they need to hear somebody say, I, I make the same mistakes. I am, am pretty hard on the kids when it comes to doing their best at school, but to the point where I’ve made some pretty good mistakes, like getting mad when I, I know they sh they could have studied harder.
They didn’t, they did this, they did that. They didn’t turn the paper in. I responded with anger and I do think that made part of the problem for him was that like, now if he comes home with a, a d on his test, and I know he studied hard and I know he did the things he’s so nervous about the D that I think I’ve conditioned him to fear the D when I just wanted him to fear the do his best.
Yeah. But also like I’m gonna motivate him until he has the intrinsic motivation himself. Like I did that I doesn’t, maybe many parents doesn’t. We know it doesn’t work. Well, apparently not now he’s so, but I just, even that’s what’s like normal kids who aren’t having PANS/PANDAS. So. Recognize that some of that might be because of the way we’ve done things at home.
And I am one of those people who I’m still trying to like, help him through. It’s not, I can be, I can say to you, oh, but you did your best buddy. Now it’s not even about like mom’s approval, it’s about the d on my paper.
That’s freaking him out, that he saw the D on his paper. Mm-hmm. So it comes, we have to look at ourselves too and say, how do, how have we historically handled it in the past, even maybe before PANDAS?
Mm-hmm. Because that plays into what our child has a mental block on now.
Krystal Vivian: What resources do you recommend parents, parents reach out to or try to access as they’re trying to figure out how to best handle school refusal with their, with their panda? Before
Lindsey Forsyth: you give a smart answer, I wanna give parent answer.
Okay. And this is my parent answer. When Angie says something about maybe one of the many options parents have for resources is a therapist. That can help them to create a plan and to help the child with how to get through it. Please, parents, please make sure that you are asking other PANDAS parents and you are finding a therapist that doesn’t just say they understand what PANS/PANDAS is, but a therapist that truly understands that the answer to all OCD is not always exposure therapy.
That there might be damage done by taking a child who has inflammation in the brain and that this is not a behavior or another. Um, this is not another way. How, how do I wanna say? It’s not typical OCD or it’s not typical, right? Exactly. Yeah, it’s not, it’s not just like a run of the mill OCD. Yes. It could be brain inflammation driving it, which.
Putting them through exposure because you sort of understand what PANS/PANDAS is, but you don’t understand the nuance as a therapist. You could be saying that they should do exposures that actually work against their wellbeing. Yes. So parents find a therapist who truly knows and understands the ins and outs of pans.
Pandas ask other parents, get vetted therapists because a therapist might say they know it because they know OCD, but OCD with PANS/PANDAS is not, and you can talk to this more, is not necessarily just like a typical OCD
Angela Henry: and same with an OCD therapist, which your PANS/PANDAS therapist should know OCD.
But there’s a big difference between a therapist that’s gone to a training or has read about OCD and a therapist who has devoted specific specialized training upon training to understand OCD. Yeah. So that’s important too. Okay. I’ll let you get to the smart part.
Lindsey Forsyth: I just, you stole, wanted parents, you, because I was gonna
Angela Henry: say, look at you.
I was gonna say have a good therapist, um, who can help advocate on your behalf. Um, we also, um, resources are the special education departments within the school, and some are better than others. Um, we’ll be honest, if you’re not getting what you need, typically every state has a organization, uh, in, like, for example, in our state of Indiana, it’s called insource.
But that is an organization that knows the legal lingo in order to be able to. Advocate on your behalf in a way that the school will understand.
Every school system also has guidelines of their special education systems. And so if your needs aren’t getting met, obviously I wouldn’t wanna jump to this first, but there are different things that can happen.
We can meet with the special education department. If we’re not getting what we need, we can write to the State Board of Education. And there are different steps that you can take along the way, um, as you might need to go upstream and get more and more advocacy. So those are always available to you. Um, again, I agree, there’s, there’s nothing like.
PANS/PANDAS parents, or like you said, a parent who has a child going through a specific challenge and they are going to dive headfirst into understanding all things about whatever that specific challenge is. And if you can find more parents in a community that have this common wisdom and can help you maybe understand something that maybe you don’t know.
We always have advice and wisdom that we can give to each other.
Lindsey Forsyth: And there are some websites that parents do share with each other, like, um, the PANDAS network or Neuro Immune Foundation. And they also Yes. And Aspire. Aspire. Right. Um, PANDAS Physicians Network is good for physicians, but also parents, but a lot of them will have their immunity.
Resources for parents or resources for teachers. Tab. Yes. Use those resources to equip yourself when you go in to talk to the school and know all kind of, this is a great last question. I think Krystal, because you go back to. Your child will be more likely to be cooperative to the extent that they physically can when they feel like you are advocating with them and for them in maybe words and jargon that they don’t have the capability themselves to say.
But I never ever hesitate to be the squeaky wheel. Um, when you need to be, you need to be and your kid sometimes you needs to know that you’re willing to be. Yes. Because then they see you as a teammate and a, and an advocate for them, and then they’re more likely to not just completely shut the whole idea down.
And the finesse
Angela Henry: of learning to be a squeaky wheel
Lindsey Forsyth: mm-hmm.
Angela Henry: Without burning bridges mm-hmm. Is a hard one. Right. But important everything
Lindsey Forsyth: can be said respectfully. It might just need to be said, you know?
Krystal Vivian: Absolutely, absolutely. And we’ll link to some of those, uh, resources that Lindsey mentioned in the show notes.
So I wanna. Talk a little bit about doctor refusal medical refusal too, because this can be something I know Angie, you mentioned earlier that it can be exhausting for kids to go to doctor appointments after doctor appointments, after doctor appointments. And some of ’em are helpful and some of ’em are not.
And there’s fear of needles and fear of blood work and fear of other things. But you know, on the journey to getting a diagnosis that is, that is part of it. And also if there are other things that it’s medically necessary, their safety is at is is at play. So I guess like going to the doctor is really important.
It’s, you can unschool, you can’t really un doctor. Mm-hmm. So what do you recommend when a child is struggling with going to the doctor Is, is trying to refuse to go to the doctor, but they need that medical care.
Angela Henry: Yeah. It’s, it’s a hard place to to be because honestly, like when they’re little, you know, we can, let’s say get them in the car when they turn into teenagers.
It’s not like we’re gonna hog tie them mm-hmm. And, and carry ’em out. Yeah. They’re not in a five point harness anymore in their car. No, for sure. So, you know, I think that’s when we just have to come with curiosity. What’s making it difficult for you? See if we can remove anything that’s making it difficult.
And then, you know, be smart about what we, what we can do. Maybe that looks like, can we do something with telehealth? Mm-hmm. If we’re scared to go into the building for whatever reason. Um, you know, sometimes psychosis comes with PANS/PANDAS, we don’t really talk about that piece too much. But, um, that, like, that was one of my first, that was the first time that I actually saw PANS/PANDAS.
I was working on a pediatric multispecialty floor. We had a kiddo that they said, Hey, this kid’s coming in with PANDAS. And I’m like, what’s that? That sounds weird. Like I didn’t know what it was. And they were in psychosis. And unfortunately for their safety, we had to call in security because they were afraid that people were up to get them.
And they were gonna try to find an exit and they were trying to run away. And some of these things are hard. So if it’s hard to go into the building, can we do some telehealth? Can we have a phone call? Can we, what, what can we do?
Lindsey Forsyth: Um, or if it’s about the germs, can we be called from our car when it’s time to go in a back door?
I mean, we’ve absolutely, we’ve seen people do all sorts of things to, right. We have to get really creative obstacles. Mm-hmm. Yeah. Or like, what can we do to lessen the frequency of those things or increase the frequency so that there’s some exposure there, like at those pending right. Or can we, you
Angela Henry: know, this is a, a big thing and I, it’s hard.
Sometimes they can happen in, in bigger systems, but can we have more collaboration within the specialties and maybe can they coordinate and come all at one time? Yeah. Um, so that they don’t have to visit five different doctors, they can just all be in the space. Mm-hmm. That’s a lot
Lindsey Forsyth: to ask
Angela Henry: of.
Lindsey Forsyth: Yeah. The providers, some places are willing to do it.
Um, especially as more awareness of this disease grows. They see the multi multidisciplinary approaches. Mm-hmm. Not only effective, but essential, um, to, to making sure that these kids get better.
Krystal Vivian: What about when your child becomes physically aggressive? And you mentioned a little bit about that, but they’re, you know, they’re a teenager and they are refusing to get in the car. They are refusing to walk in the building. They are getting physical about it. Yeah.
Angela Henry: That’s hard. ’cause now we’re kind of talking about the ugly side.
Yeah. Mm-hmm. But honestly, it’s, it’s a real side. Yeah. So, um, even just this week, I’m, I’ve got a kiddo that I’m pretty sure has PANS and, um, have brought it up to the, the parents and they, uh, haven’t decided to do, to go down that road yet. Mm-hmm. Um, but this week I, I got a call, Hey, um, this, this kid was acting in a way that was dangerous to himself.
And so luckily they, they were in a space where they could get to a local, um, space for assessment. But if they were not in a place where they were able to get into a car, we actually had the conversation. That. Well, what would you do, mom? Would you call the police? We probably, unfortunately would have to bring in resources if we’re not able to be in a space of safety.
And of course then they, the kiddo, because they have a lot of anxiety. Um, they’re like, well, are they gonna hurt me? Like, well, no, their job isn’t to hurt you. Their job is to help bring you to safety.
Lindsey Forsyth: Yeah. And that’s the trick too, is okay, so Angie’s talking about that, that logic, which makes a lot of sense.
But then you have families who are scared to go to the emergency room. Mm-hmm. They’re scared to call the police. They’re scared to involve people who might not understand the PANS/PANDAS brain.
And might take their child. Or might say, what did you do to this kid? Or. These children are saying, or they, they’re having hallucinations and they’re saying that you’ve done something maybe that they didn’t like.
It’s, it opens a whole Pandora’s box. Oh my gosh. Possibility. And you know, Angie, I always says this, I don’t ever want to, in our desire to give people help and resources gaslight in them, into thinking that this is, by any stretch, not almost utterly impossible. Like that’s a real thing. So I’m not saying I wish I, I wish I had a better answer for that question.
Angie’s answer was really good. But I also want to acknowledge that there are plenty of parents that are listening that are like, yeah, I would basically, they’d need to be near death for me to take him to the emergency room because I, I don’t want to risk. The worst thing happening is they institutionalize him or put him in a hospital room and they say, I can’t see him, and I’m the only person that feels safe to him right now.
But he doesn’t know that at the moment because you’re seeing him. You know, at one o’clock in the afternoon Yes. But at nine o’clock this morning, all he needed was me.
Krystal Vivian: Right.
Lindsey Forsyth: And hard.
Angela Henry: And honestly, that opens a whole Pandora’s box of if they did get placed inpatient, would the physicians, Are they PANS/PANDAS understanding? Are they friendly? Because some medications can make it actually worse. Absolutely. Or are they just going to medicate? And we know with the SSRIs, some of them can make it worse. There, it, it can be, it could be a challenge. It’s really hard and there may not be a great answer. And so it’s really important if there is a therapist on board mm-hmm.
If they’ve made, if it’s available, if they’ve made relationship with the emergency room family or community and, and has a relationship or a resource or a. Friendly PANS/PANDAS advocate. Mm-hmm. Inside that space, if they can. Uh, Karen, Liam also says, do a, I think a warm handover or something like that where you can transition in a friendly way.
Yeah. In a really uncomfortable, at a really uncomfortable time.
Lindsey Forsyth: Yeah. I wish there was an easy
Krystal Vivian: answer for that.
Lindsey Forsyth: Me
Krystal Vivian: too. Well, the, I mean, that’s the, that’s the harsh reality of this. Mm-hmm. Right? Is that there’s not an easy answer, and our goal is not to provide all of the answers. Right. Because it’s impo, one, it’s impossible, and two, there’s no such thing.
Um, and sometimes as a
Lindsey Forsyth: parent, you just need to have someone be like, yeah, that does suck. It sucks. It’s hard. Yeah. We’ve, yeah. Like we’ve been there. Yeah. And there’s no right way,
Krystal Vivian: but it’s about trying to do your best mm-hmm. And trying to help your kid. Mm-hmm. And that’s hard.
Angela Henry: Yeah.
Krystal Vivian: Um, but it sounds like. I mean, it sounds to me like no matter what, whether it’s school refusal or doctor refusal, having that therapist relationship can be really critical in helping your child being able to, one, communicate their fears or their concerns or what it, whatever is underlying, and then trying to figure out what next steps are.
Um, and it’s not a, there’s no one size fits all.
Lindsey Forsyth: Yeah, no. Well, and we’ve said this in past episodes too, uh, especially I think we’ve said it in, um, the surviving the flares that we’ve put out episodes. Um, sometimes the best time to make these plans is when you’re not in a flare. Is not when you’re in that crisis mode, um, when emotions are gonna take over.
Yeah, yeah. Or, or in your own fear. Mm-hmm. Like, is writing the script for you. Sometimes maybe recognizing, you know, this is the best time to create that safety net before we climb on the trapeze mm-hmm. Thingy, I don’t even know what they’re called. Yeah. The bar, whatever, but like, so that net now
Angela Henry: you’re not in clear mode.
Mm-hmm.
Lindsey Forsyth: Absolutely.
Angela Henry: I, I think about that with addictions too. Mm-hmm. Right. Like, let’s say your kiddo’s in the middle of addiction and you don’t have a plan for when something bad is happening. If you don’t have the plan ahead of time, emotions are gonna take over and maybe you won’t put them in.
You’ll do the things that are needed to be done because you’re afraid or you’re scared, or mm-hmm. Whatever it might be.
Krystal Vivian: It’s like the fire drills that we’re, that we do, right? Mm-hmm. Like you kids do fire drills in schools, and you’re supposed to do ’em at home too, with your kids of, okay, if a fire happens, then this is, you know, you’re gonna do this and you’re gonna leave the house and you’re gonna meet at this place, or you’re gonna go to this person’s house, or whatever it is.
Mm-hmm. That’s what they say. Like make sure that you, you drill that in. Yeah. Yeah. And we
Angela Henry: do that with PANS/PANDAS too. We
Lindsey Forsyth: have a flare protocol,
Angela Henry: right?
Lindsey Forsyth: Yeah. But let’s say this is the, this is the other PANDAS parent part of me that’s like, okay, that’s all well and good, right? But I’ll throw at you. Let’s say your kid’s doing a fire drill and there’s really a fire at the school and there’s a secretary at the end of the hall that grabs your kid and holds him and says, whoa, whoa, whoa, whoa, whoa.
No, you can’t leave the there. There’s a rule. We do not leave the building. Right, right. Yeah. No running. So, and, and that’s an analogy, a metaphor for unfortunately the outside world. And that’s what us Pan, pan just feel like it is. It’s like there’s us and then there’s everybody else that doesn’t understand.
They’re not yet caught up to the fact No, but like we’re doing a fire drill. Like there’s a fire. Right. Uh, and we’re escaping the, that’s why we have to break this little rule of leaving the building at. 1:00 PM because the rest of the world hasn’t caught up to the fact that like, no, our, our child is actually like, has, is having encephalitis right now.
And you may not agree, you might consider it quote controversial. Um, neuro Immune Foundation had something recently on social media that was like a PANDAS family fell into a hole. And I shared it because it’s like the doctor said, well, the hole may not actually exist because it’s a controversial thing, so not even sure your child’s in a hole.
And then the other family said, well, maybe if you disciplined, they wouldn’t fall into the hole, or, you know, all of the stuff. It’s like we’re waiting for the rest of the world to catch up. So knowing and acknowledging that there’s these obstacles that a lack of awareness and ignorance around what our children are going through might actually make our plan really diff difficult to make.
Yeah. Um, and certainly scary to follow through and maybe even make the plan not be the plan. Mm-hmm. Yeah, because we’re, it’s a real thing. In some communities more than others, there’s a knowledge of what this is. Mm-hmm. So I just wanted to acknowledge that because I wanted to say what parents might be thinking when they hear our recommendations, you know?
Yeah. Well, yeah. ’cause it’s, it’s easy
Krystal Vivian: in theory and practice or in theory, practice and theory are the same. But in practice, theory is theory. Yeah. And practice is practice. So what actually happens when we’re in that situation is totally different. And there are those other factors. It’s, this is hard.
Mm-hmm. It’s really hard. I think recognizing that is really important
Lindsey Forsyth: and leaning on other PANDAS parents. Yeah. You can find like, again, the PANDAS parents Facebook group or you know, you can reach out to some of these foundations and these networks that can plug you in with some other parents who may have already done this two years ago.
And this is where, you know, in my area, this worked for me. This didn’t lean on other parents who, who’ve been in the hard Yeah. ’cause they might actually be more helpful than a. Therapist that does not understand PANDAS. Yes, 100%. And you
Angela Henry: don’t know like the power of your story. Mm-hmm. The power of your story has such a ripple effect.
Yeah. And for me, like I had seen PANS/PANDAS, but it really wasn’t until a parent really helped me understand PANS/PANDAS. And it’s changed everything.
Krystal Vivian: Yeah, absolutely. Well, finding the community and connecting with other people, other people who have been through it is so important. Yeah. Um, and I think that’s, that’s the best place to leave it is you do the best for your kid and find community and yeah.
Find other people who have been through it. Yep. And we’ll fly through alone, we’ll fly through fog together. That’s right. Yes. Alright, well thank you Angela. Thank you Lindsey for both of you. Thanks for having us. We like to end each episode with a story of hope to let you know that if you’re flying through the fog right now, there is hope in the future.
The fog’s just keeping you from seeing it.
Story of Hope: This is to the PANDAS parent who’s in the thick of it right now. I have been there. It is so hard. So I pray that this truly brings you encouragement and hope. Last summer, our child received treatment for the PANDAS condition, and in the past months we have seen significant change in our child and just wanted to share some encouragement of something that I don’t think that we ever thought we would see our child is doing very well, is wanting to be involved in groups, wanting to even try out some new things, including being in a kid’s corral and trying an instrument.
And even trying an acting class. None of these things we thought would ever be possible, but here we are. Stay encouraged. Know that this journey is not forever, and that on the other side, a miracle can occur.
Krystal Vivian: Listeners, we’re 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 maybe once you thought was never gonna happen again.
You can record a voice memo 60 seconds long or shorter, or write it out for us in a few paragraphs to read on air these. Email it to PANDAS@federatedmedia.com and we may choose it for a future episode.
Thank you again, Angela and Lindsey.
Lindsey Forsyth: Thank you for having us. Yeah.
Krystal Vivian: Thank you to our listeners for listening and tuning in. We appreciate, uh, your listenership and your support, and we hope that you found this episode valuable and helpful. If you found this episode helpful and if you know that somebody else would find it helpful to please share it with them, you can also leave us a rating and review on your favorite podcast app.
That is another great way to make sure that other families can find this resource. Flying through Fog is edited and produced by Tommy Lee. Special thank you to Legacy Heating and Air for your support of PANDAS, Michiana, and this podcast. I’m Krystal Vivian. We will be back again soon with more interviews and conversations flying through fog.
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:
