Siblings, Schools, and Friends: Navigating PANS/PANDAS Conversations With Kids
This is the transcript of the fifth episode of Flying Through Fog: A Podcast For PANS/PANDAS Caregivers. Note that there may be some mistakes in the transcription.
Krystal Vivian: Welcome to Flying Through Fog, a podcast for PANS/PANDAS families. I’m your host, Krystal Vivian, and I’m joined in studio by my co-host Lindsey Forsyth, a mom of kids with PANDAS. Welcome, Lindsey. Thank you. Thanks for having me. Thanks for being here. We’re also joined today by Angela Henry, a licensed clinical social worker based in South Bend, Indiana.
She specializes in serving children, adolescents, and families with OCD ticks, Tourette’s disorder anxiety, body focused, repetitive behaviors, and of course, neuroinflammatory challenges like PANS/PANDAS. Welcome, Angela.
Angela Henry: Thanks for having me.
Krystal Vivian: Thanks for being here. As a parent, it can be really hard to have conversations about illnesses with your kids.
Especially when the illnesses are happening to them. And for our PANS/PANDAS families, we know that this is something that weighs heavy on you as well. For our PANS/PANDAS families, we know that this weighs especially heavy on you. So today we’re gonna talk about how to talk to your kids about PANS/PANDAS, both for kiddos who have been diagnosed and also their siblings, friends, classmates, and their extended community.
Angela, I’d like to start with you as a licensed clinical social worker. From your perspective, why is it so important for families to have these conversations with their kids?
Angela Henry: I think that’s a great question. I think it’s important to have the conversation because it brings about a space to talk about the difficult and the hard, and it also gives an opportunity to not put it in the corner, to not be invisible.
To be able to have a genuine, authentic conversation about what this is, how it’s affecting us, uh, how is it affecting all the different domains of the child and the family’s life. And it just provides an opportunity to. Problem solve to connect better, to be in relationships.
Lindsey Forsyth: Yeah, you’re right. Well, and I, I think you, you hit a good point though about giving space to talk about the hard, because I think that sometimes when the kids go through this, they have, uh, and it, it certainly depends on their age.
Yeah. But, um, they’re, they’re developing a trust of their own self-awareness and my, what my body’s telling me. Is real and I’m feeling a little bit like something is off, and for that to be acknowledged. And put in a space where it can not only be acknowledged, but you can talk about how does this affecting me?
How does this make me feel? It’s not isolating them and making them feel as if they are, um, imagining things like it’s part of the whole, like, we want all of our kids, PANDAS are not to trust themselves and to say, this doesn’t feel right to me. So when I’m older and something doesn’t feel right to me, I have the nerve to say, this doesn’t feel right to me.
And so I think it’s, it’s if handled correctly, which you probably hear me say a million times, but that can be really helpful for kids to, to start to learn that lesson. Yeah. In however life hands that to them.
Angela Henry: So true.
Lindsey Forsyth: I think
Angela Henry: even this week I had someone that came in, a little kiddo that was diagnosed with OCD and oftentimes this is the case that they find like it’s such a relief.
Mm-hmm. Actually to know there’s a thing. That this is a thing. I’m not broken. There’s nothing wrong with me, and it gives us, it, it, it, uh, it
Krystal Vivian: spaces it out. You can name it and then it becomes other. It’s not, it’s something that you’re experiencing, not something that is part of you. Yes. Yeah. It’s not
Lindsey Forsyth: something that you’re doing purposefully.
Yeah. Right. It’s not a character flaw. Exactly.
Yes. Yeah. It’s not
Krystal Vivian: who I am. You’re not a bad kid.
Lindsey Forsyth: You’re a kid experiencing something hard. Yes. That a lot of kids. Wouldn’t know how to handle and you’re doing a great job. Mm-hmm. And maybe I don’t know how to handle it. Mm-hmm. And we will get back to that later.
Right. ’cause I’m sure that’s a huge part of our conversation. Right. But we’re gonna be side by side, and this is the first step is like, okay, if there’s a mountain in front of us, we have to know that that’s a mountain in front of us and not a plateau. Right. So like, let’s call what it is. Mm-hmm. So I think that your point about creating space mm-hmm.
This, this actually. Can be something very beautiful for your family.
Krystal Vivian: Yeah.
Lindsey Forsyth: They’re not in it alone. Mm-hmm. Mm-hmm.
Krystal Vivian: How do you start that conversation with a kiddo? Is it something like, I mean, I’m not a, I have not gone through this process as a parent yet, but um. Where I guess I don’t, I imagine like, oh, the parents and the doctors are talking and the kids might, the child might be in another room or maybe they’re in the same room.
I guess, how does that conversation start with the kid? They obviously know that there’s something wrong because you’ve been going through months and months and maybe years even to get to the diagnosis. So how do you start that conversation thinking about also the age of your kid
Lindsey Forsyth: and where they are?
I’ve worked with a lot of families who have, of course, very different. Stories of how this has all transpired in their home. One of the common themes of all of the families is it didn’t, it wasn’t ever this thing like, oh, hey, we went and we took a blood test and it totally surprised us. We had this thing.
Right?
Mm-hmm.
This has been months, maybe even years in the making where you have. Disciplined for quote, bad behavior. You have been wanting to pull your hair out because the teachers are giving these reports from school that you don’t recognize at all. It’s, it’s coming on the heels of a very difficult time for your child and for your family.
So it’s kind of interesting that you know, a lot of times when you get a tricky diagnosis. You have to think like, how do I like lay this gauntlet down on my kid? Yeah. That’s typically not what’s happening here because the gauntlet has been showing up at your front door for the last six weeks, eight weeks, whatever.
Mm-hmm. And everybody’s freaking out because they don’t know what it is. So, and, and we have a lot of times where parents are like, oh my gosh. Like they have this, this aha moment when we’re on the phone and they realize, you know, the doctor. The doctor thinks that they might need to look into this PANDAS thing, or another friend told them, and they had that moment of like, I think as a mom, I know in my gut this is what it is.
Mm-hmm.
And then their immediate response is, oh my gosh, I feel so bad. Wow. I’ve, I’ve, I’ve been trying to force feed him oatmeal because I thought he was just being stubborn and really he’s, he won’t eat it because of the texture or a fear now that he’s developed with OCD around it. Mm-hmm. So a lot of the families go back and say.
Hey, I learned something new. I’m really sorry. Yeah. Well, and it’s repeat leading into Yeah, it’s, yeah, absolutely. I didn’t, because all along know a lot of parents think, yeah, what’s happening and they’re disciplining their kid or they’re doing what their cousin says to do, or their teacher says to do or whatever, and they have to come back and it, it really can be a beautiful thing in saying to your child.
I can tell you what I did with Brady. Yeah. Um, and Brady knew, of course, that he was feeling not like himself. I mean, this was, you know, five months in the making. But we were diagnosed three years after onset. So we’d had ups and downs and, um, we said to him, you know, we, we see and understand that you’re not feeling well.
Sometimes not feeling well can mean I have a tummy ache or I have a sore throat, or I have a cough, but sometimes not feeling well. Which again, this all goes into where our culture hopefully is going where mental health is not stigmatized.
Mm-hmm.
Feeling well might mean I just don’t feel right inside. I don’t feel emotionally.
Well, and mom and dad really wanna help you and so we’re going to take you to the best doctor we could find. We did all the homework. We stayed up at night because we love you so much. That, you know, they say like the, uh, scared mom does more investigative work than the FBI. It’s real. It’s true. It’s true.
It’s true. But what I see in the office, yep. But, um, we’re, we found a really. A, a doctor that we really think could help us and we would love to make it a fun trip out to Washington DC Well, we’d love one-on-one time with you. We’re gonna see the doctor and we’re gonna find out what we can do to support you and get you better.
And the doctor, a lot falls on the doctor too, and I think that’s a question. Or a conversation that you could have with your doctor before there’s ever a conversation with a child is like, please, whatever your preference is as a family, be conscientious of how we want this handled with our child. But Dr.
Latimer, who we saw, um, who diagnosed Brady was so good about making it a, an 8-year-old conversation. Mm-hmm. And she said, okay, Brady, so here’s what’s happening. And she’s talking to us and a lot of it’s over his head. And by that time, he was basically a shell of like, who Brady was. He was almost like not even listening.
He just kind of sat and existed. He was so depressed, which is not how he is at all. But, um, she said, you have this army that your body sends out when you have infection, and this army has soldiers and the troops just go and they bite. They, they beat the infection, they fight. The army fights. Sometimes some of the soldiers go rogue and they do a little bit more than just go to after the infection.
It goes after your, your brain. And that’s what’s happening here. And our job is to make those soldiers know where to go and to stop going after your brain. And like he felt, his eyes brightened up as much as they could at that moment. And he, I think he felt. Like, ugh, I can finally exhale and know that there’s somebody that just put words behind what I felt like, but I needed help knowing.
Right? Yeah. So,
Krystal Vivian: and as an 8-year-old, you probably don’t even re like, you don’t know that that’s even a thing that could even happen to you. Wait, whatcha
Angela Henry: talking about? No. And actually, based on your conversation. Um, our conversation before Lindsey, about that conversation with Dr. Lamore, I created a little graphic Mm.
To try to help people understand. Mm. Mm-hmm. Yeah. Yeah. So, I don’t know. We can Yeah. Link that, if that’s helpful. Absolutely. Because it’s like a little Yeah. It’s kind of a little animated. It’s, it was good. Yeah. Um, but to, to also think about coming you, you know, your kiddo best. Mm-hmm. So you’re gonna know, like given their age, you asked Yeah.
Krystal about their age and what do we do? Parents. Parents know their own kids. They, they know. And every good conversation doesn’t it start with curiosity.
Lindsey Forsyth: Mm-hmm.
Angela Henry: You know, you’re gonna go into curiosity. What is this like for you? You’re gonna ask them for their, from their perspective, how
Lindsey Forsyth: edifying that is too.
Angela Henry: Yeah. Because they wanna be seen and heard and listened to. You know, after you’re hearing this diagnosis, all of, you know, these armies and what’s happening in your, you know, blood, blood brain barrier mm-hmm. And all this stuff that’s happening. What do you think about this? Just give a space for them to ask any questions that they have.
Lindsey Forsyth: Yeah. Like the consultant as opposed to the person in the room everyone’s talking about, but not to. Yeah. Yeah. You know, giving them some ownership of that conversation. Mm-hmm. Inviting them to be a part of their own world. ’cause it’s
Angela Henry: collab, everything is better. Collaborative. Mm-hmm. Right, right. Including this.
Right. It can’t be otherwise.
Lindsey Forsyth: Right. And I think you’re right. Coming from everything and it’s just, just like a good rule of thumb that I feel like you do tell parents to really try to live by is curiosity instead of judgment. It’s like a lot of times as a parent, when you have systems in your mind built for how things should be and what your kid was supposed to be doing the last year, and how all the negative feedback you’ve gotten and all of the fear that you have, we don’t often go to the curiosity.
We go into self-protection and part of self protection looks like we into shame, right? Yeah. So. Giving the child a chance to speak about. Okay, so we, you know, we have this information and however you wanna say it to your kid. Like for, for Brady, it was always like, we are learning with you.
Mm-hmm.
You’re gonna be teaching us, you’re gonna be teaching your siblings.
What a huge responsibility, but also what a privilege for, for us even to, to learn from you. Yeah. So, um, no, I think you’ve never been a mom of a
Angela Henry: kid with PANS/PANDAS. Right? There’s no rule book for you. Right. They’ve never been a kid at this age, at this stage mm-hmm. With PANS/PANDAS. Right. Everyone’s blindfolded.
Yeah. And they’re flying through fog. Mm-hmm. Right? Yes.
Lindsey Forsyth: Yeah. But also I think that, um, you know, I have a friend who always says to her kids. When she makes a mistake or when any of them make a mistake, she’s like, you know what? None of us have ever done today before. Yeah. And I feel like that that’s true in this.
Exponentially more. Exponentially
Krystal Vivian: more. Yeah. Well, I think that’s such a beautiful thought as like a parent and I remember. When my daughter was an infant and she’d be having a hard time, and I was like, it’s okay. You don’t know what it’s like to be, you know, a three month old right now. Mm-hmm. You don’t know what it’s like to like figure out how to sleep through the night, and I don’t know how to deal with that.
Mm-hmm. Yeah. So we’re just, we’re we’re in it together. Yeah. And this is, yeah, even more so exponentially. Lindsey, you mentioned siblings and I wanna talk about that too, because. PANDAS is not something that just impacts the child and the parents. It’s the siblings too. And so how do you, um, how do you, both of you recommend or how do you start that conversation with siblings too?
Obviously they know that things are going on in the home. Um, are you having a similar conversation and explaining that detail of there’s they’re soldiers and they are gone rogue. How do you explain that and how do you handle that with the other kids in the family and also knowing that that’s also their, their ages also goes into that
Lindsey Forsyth: too?
Well, in my family, everything is out in the open to the extent that the person most affected by it wants it to be.
Mm-hmm.
So, Brady’s a pretty open kid, and he sees this as he’s proud of the advocacy that has happened as a result of the ripple effect of his diagnosis. Like in some, he sometimes will be like, I’m.
I’m not happy I have PANDAS, but I am happy with the people that our story has helped. So he’s pretty open. And so as a result, we were always open with the kids because we took his lead. Mm-hmm. However, I do, and I think that is an age and maybe gender thing, and maybe personality, like all of the things.
So I think to your point, Angie, earlier about like knowing the child and giving that child the latitude to maybe have some say in how much, maybe how often we talk about it or you know. I think it’s important that the other family members know because there will be times that they have to show extra grace and maybe making that a part of the conversation with the patient himself or herself of like, we have to come up with a plan for how do we talk to the people that are super close to us in our very intimate circle?
And then how do we come up with a plan of how to talk to maybe people who maybe don’t? Don’t have that privilege and trust with us to, to, but they might need to know a little bit. So like, kind of look at it as an orbital thing where every ring on the outside maybe has a little bit less access to that part of who we are.
Mm-hmm. Um, but so in our, in our family it, we are very open about it and there are times where Brady will say, or when he was younger, he’s, he’s doing so well now that we almost never have to have these conversations. Um, yeah, I’m, I’m feeling like I have a flare coming on. I just need you guys to know that, and there’ll be times where he has a hard time and, you know, my daughter will say, you think he’s in a flare?
I’ll be like, yeah, I think he is. And she just shows him a tremendous amount of, um, patience and understanding and just kind of almost looks at him with love. Like it’s just, it is an unspoken bond that they have in those moments. However, if you have a teenage boy. Um, or a teenage girl who, um, who has this diagnosis and it’s new to them and they’re at that very vulnerable stage of.
You know, individuating and yet wanting acceptance and peer acceptance mm-hmm. And all those things. Um, I have some families that we work with that com the, the patient completely shuts down when there’s even talk within the home about it. And they’re very, very private. And it basically comes down to one parent that they have conversations with.
Um, and I, I do think that that works really well for them because the parent is very respectful of, uh, her. Privacy. Mm-hmm. And that is trust built in a really difficult space that just shows the child no, like I really am listening to what you’re saying. And while there might be times where we have to come back and circle around and say, okay, maybe this is not a time where we probably should have this conversation with a sibling or whatever.
Um, they know that you’re, you’re showing up the way they’ve asked you to. Um, and so I don’t think every family has to do it like our family, and I don’t think that families who didn’t do it like my family, are doing it wrong because their children are very different than my child and it has worked for them.
And it because the mom isn’t blabbing to the siblings in, in that child’s mind or. Even pulling in other people unnecessarily. Other family
Angela Henry: members. Yeah. Maybe they’re not comfortable with Aunt Sue knowing Right. The ins and outs and the details.
Lindsey Forsyth: Right. So they’re more willing to be really vulnerable with her because they all need to know, they just have one person that, that they are safe with.
Mm-hmm.
Because sometimes people are external processors like my family, and then there are sometimes where it’s a very internal process and they only speak when they really feel like they need to. And so it doesn’t need to be on blast to everybody. So I, I hope I didn’t talk too long about that, but I think it’s important to understand, like, it, it’s definitely not a one size fits all approach.
None of this is,
Angela Henry: and, and for the clinicians listening, what I typically do is I’ll, depending on the age of the, the kiddo, I’ll, I’ll try to give them as much autonomy in that process as possible. Who, who, you know, if we’re talking to the siblings. The siblings obviously need to know. So that’s a conversation.
And then we’ll talk about how, how would you like to see that happen? Would you like the siblings to come in with you? Would you like me to talk to them alone? What’s that? What’s that gonna look like? How is that, um, how do you feel best? Mm-hmm. Um, about that conversation. Great point. That is gonna have to happen.
And then again, depending on the family, um, like you mentioned, Lindsey Peyton is wonderful. Mm-hmm. At, at giving him grace. And you have other families where they might have younger kids or kids that just don’t quite understand and there’s a lot of anger.
Lindsey Forsyth: Mm-hmm. Yeah.
Angela Henry: Um, and animosity and the kids are talking about, well, it’s not fair Yeah.
That, that this kid gets treated like this. And Yeah. And outside of PANS/PANDAS, when you have a, it doesn’t even matter what the challenge is. Nothing is gonna be fair, it’s just not. And so, actually I have that conversation a lot. Um, we’re not talking about fair because if we’re talking about Fair, then Peyton and Brady have to wear the same hairstyle.
Lindsey Forsyth: Mm-hmm.
Angela Henry: They have to go to bed at the same time. They have to do the same sports. They have to like all the same foods. That’s fair. Yeah. So we’re not talking about fair. We’re talking about I love you. I love Sammy over here. And so Sammy needs this and so I’m gonna help Sammy with this just like, um.
Sophie, if you needed this, I’m gonna help you with that in a special way. So we’re not talking about fair, we’re talking about loving the kids where they are with whatever it is that they’re having a challenge with.
Lindsey Forsyth: Mm-hmm. And like a little backdrop to that is by the time you have a diagnosis you’ve been dealing with potentially again, months through years of.
Already tiptoeing around one child to some degree because you are just trying to keep the train in motion. Yeah. You didn’t even know it was happening. Oh, yeah. And on eggshells. Yes. And I mean, again, kids notice things and they a lot of times will have built up resentment that, okay, well. They have to brush their teeth for 30 seconds.
I brush mine for two minutes. Well, that 32nd toothbrush that’s not fair, was a big deal for this kid. So like, you know, you’re coming on the heels of that. So there sometimes with families, there is a good amount of resentment even built up among the kids, or you know, it might come from, not in a sense of an apology, but we’ve had some parents that are like I, I went to my younger daughter.
Because she was accustomed to going in her room and basically hiding under her covers and watching, you know, something on her phone to not hear the noise of my other son screaming. And I’m able to come and say, Hey, you weren’t, like, imagining how difficult that was. That actually was really difficult.
And we, we did get some answers. And I, I want you to know we’re gonna pay really close attention to your needs and regular check-ins with the other siblings. Yeah, that’s a huge one. It’s like I see him. Mm-hmm. We’ve seen him. We all have seen him. Mm-hmm. But like I see him now in a different way because I understand him more.
Mm-hmm. We have some medical stuff going on here. Yeah. But I, I want you to know, I also have seen what you’ve been going through for the last six months and oh my gosh, I’m so touched by your grace and I’m so grateful for your. Showing up in our family the way you have, whether it’s been good or bad, like it’s been hard and you’ve gotten up every morning and you’ve done it.
And I just want you to know, I, I, I am going to do a better job of checking in with you. Does that mean we go to Starbucks every Friday for a half hour and we sit and just talk about what you need? Maybe we need to make that time right now. And of course, most parents hearing this are probably like the last thing I need is to be focusing on anything but this PANDAS right now, but.
Remember if it’s 20 minutes that you carve out a special time with your phone down with your child. Um, I think it’s Dr. G Mate that says like, special, special time with your child where they run the conversation. You’re not asking them questions, you are simply investing in your watering that garden.
That might be something that the siblings need. So having that be a part of conversation is what is, like you said, Angie, with the the patient. What’s, how would you like me to show up for you in this mess right now? Or maybe while I’m focusing on this child, would you love it if you know your dad when things start to get hard here, maybe Dad or Aunt Susie or whoever.
Maybe takes you out for a quick sandwich or like, what, what, what is your most stressed out moment in all of this? Mm-hmm. And how do we help you through that?
Yeah.
So it can be really positive for the siblings. Well, it’s really hard
Krystal Vivian: to balance, I think, for any parents of, of multiple children to balance the needs, the competing needs of your children.
And they’re gonna be different. ’cause they’re different people.
Lindsey Forsyth: Yeah.
Krystal Vivian: Um. But I love the, the validation that you’re talking about and the, the recognizing that they are going through some, they’re going through this too, and how can you help them meet them where they are.
Lindsey Forsyth: Yeah. And just a quick example. We, we worked with a family.
You were saying, how do we validate them? And that, that struck a nerve with me. We were working with a family together who, um, the, the son only wanted the father.
Mm.
Did not want anything to do with the mom. And the mom was really getting hurt about it. Mm-hmm. And the daughter was also getting really hurt that like, it was all about, and
Angela Henry: that’s not uncommon for kids to kind of choose, at least in my experience.
Good, good to know. Well, like, they’ll, they’ll choose a, a parent almost. Mm-hmm. Um, and I don’t know the rhyme or reason to that. Mm-hmm. But it does leave the other parent who’s not feeling as gone to.
Lindsey Forsyth: Mm-hmm.
Angela Henry: Like, what’s, what’s wrong with me? Or what did I do? Right. It’s, it’s tension. It’s not the way it is, but yeah.
Mm-hmm. It causes a lot of tension in a lot of, a
Lindsey Forsyth: lot of different ways. Yeah. And tension in the marriage. That’s, you know, that’s the other way. Yeah. Um, and so like this family Angie was recommending, she’s like, you know what though? Take this opportunity. You know, that this is the disease in some respect.
’cause this changed on a dime with this particular family. Maybe in some families that’s more the pattern and maybe that’s a normal thing. But in this particular family, it was like all of a sudden. This child didn’t want anything to do with me. And you said, why don’t you just take, take the other child out and take, use this time to invest in this other child.
Yeah. Because you may not ever get that opportunity again. One-on-one. We’re smart.
Angela Henry: You’re so smart. But I’ll say on that, and I know like we’re going long with the questions and everything’s fine, but also something that I experienced and I said a little bit about it, but I think it’s important to, to bring up.
That again, especially with teen teens, to really respect the information that they want to go out. Mm-hmm. To other people, because the parents are really struggling and, and we’ll be honest, like I thought for a second, like, oh, let’s do a mental health plug and say, you know, parents, you are needing help too, and it’s okay to talk to a mental health professional.
And all of that is true. And at the same time. We know that these parents are drowning. Mm-hmm. And they’re gonna help themselves last.
Lindsey Forsyth: Mm-hmm. Mm-hmm. So
Angela Henry: while we can say these resources and things that we know are helpful, um, we also know that life is life. Mm-hmm. And so they’re more apt to talk to Aunt Sue.
Mm-hmm. Um, their brother, their, um, what would be for the kid, the grandparent. Right. And. Sometimes if these teens know that the parents are going to these family members, even though like the mom and dad need support and they need to talk to other people, if the kids know that that’s happening, it just can really hurt.
Mm-hmm. In some significant ways. Mm-hmm. So try to monitor that. Yeah. And be really. Careful and boundaried around that.
Krystal Vivian: Yeah, that’s a
Angela Henry: great
Krystal Vivian: point. Make sure that you’re having, when you’re getting support from somebody as a parent, make sure that you’re doing it away from your child and that they, they also know that, Hey, we don’t want Susie to know about this little Susie to know about this
Angela Henry: because it, you know, there, it can be shame that comes with that.
Yeah. And we’re trying to outsource that and normalize all the things, but it can be difficult.
Krystal Vivian: Mm, that’s a great point. Yeah. So let’s talk about, then let’s expand the circle yet again. Now to extended family, maybe school administrators, teachers, certainly at a certain point. Um, you have to let them know and, but we wanna be respectful of the child and their need for privacy.
How do you balance that and how do you, how have you navigated those conversations or helped families navigate those conversations with teachers and school staff members and extended family members who really do need to know, but need to be respectful too?
Angela Henry: As it relates to the school, the beautiful thing is that there are, uh, built in resources for that.
It’s called an IEP or a 5 0 4 plan, and that helps provide. Resources to the child in terms of accommodations that they might need within the school. Uh, so oftentimes we know these kids have to miss school. They’re not, or they might miss big chunks of school, or school might look different. It might look like learning, but in the home environment, sometimes these kids need to come completely out of school and unschool.
And there’s a lot of, a lot of different ways that, uh, we can have communication with the school regard match. So again, those are built in resources and ways that we can communicate with the school and work alongside them to get these kiddos what they need in terms of educational needs.
Lindsey Forsyth: I think a lot of times the parents that have not wanted to have conversations with the school are the parents who are afraid of their children being labeled.
And what I say to those parents, again, this is just my opinion. I’ve seen enough with my own experience and with other people’s experiences to know that, let me tell you something. Your child is suffering through school and some teachers are really gracious about the patients needed and some teachers are not.
And if you are worried that your child is being labeled. With Pan PANDAS or whatever, or OCD or, or Tourettes, I would rather my child be labeled for a medical condition that identifying it provides love and patience to that child rather than them being labeled as misbehaving, troublemaker who’s always, um, causing.
Problems when there’s a transition or can’t keep his hands to himself or, because I would rather them internalize I’m a child with OCD than I am a bad kid.
Mm-hmm.
And unfortunately, sometimes you have to communicate with schools and actually have legal documents in place that must be followed to protect your child’s heart and soul.
And that is sometimes of balance that has to be struck. My recommendation to parents when they ask about how much to tell is first, there are some teachers who will notice things about your child because they spend 180 days of the school year with them for eight hours a day that you may not actually notice because you’re not watching them before lunch.
You know, have a meltdown because they didn’t do their math facts right. Or like, they, you don’t have those opportunities at home because it’s a different context. And if, if they’ve seen them in, you know, September, October, November as who they really are, and then you know, you get your diagnosis and you tell the teachers, and in March they start to see.
A real decline in your child’s handwriting or whatever else, they can be a part of your team. Mm-hmm. I mean, they’re doing the surveying with you, but most importantly, in my experience, I actually go to the teachers before the school year even starts, and I ask to speak with them one-on-one. I go in face-to-face if it’s possible.
I know it’s not always possible because of jobs and um, just how schools have things set up on their end as well. But I ask, I give them. A face-to-face rundown of what happens. I tell them what they can expect. Worst case scenario, I leave them with some articles if they wanna look into it more because you need the credibility.
Um, and I will do this with administration too, but less the actually administration. The administration is helpful with the IEPs and the five oh fours and things like that, but the people who are spending hours a day with your child need to know that about him. So if it’s not being too superfluous story about my son, he went to a new school.
In eighth grade, hard year for anybody to move, in my opinion. I thought it was really brave of him. I was really proud, but we knew it was gonna be hard. Mm-hmm. And the transition was really hard. And this is just him being a normal kid. This is like, take PANS/PANDAS off the table. He was a complete class clown because he was trying to make friends the first couple months and he knew it, but almost couldn’t, like it was a part of him that was showing up to protect himself.
And there was one teacher that, um. Was struggling with that a bit, and when she learned a little bit more about the protective mechanisms of that, they became best friends because they suddenly, like it was less a power play, it was less that he was trying to discern the class. It was more than he’s trying to be, he was trying to fit in and everybody understands what that feels like.
So just giving her some background, and this is again completely independent of Pan PANDAS, but giving her some background is this is what we’ve noticed in him. She, she was always willing to be helpful. She just thought he was being a kind of a jerk. You
Angela Henry: know? You just gave her information for her to be able to change her lens.
Yeah. And that changed
Lindsey Forsyth: and she was happy to do it. It’s not like she was fighting it, it was just that she needed to know the information. Yeah. So with any of our kids, right, sometimes we just have to be a mouthpiece that they didn’t know they needed. Um, and so be, especially in the schools. The people that are gonna be surrounding your kid, how do you help them to put themselves in your child’s shoes?
So that’s a huge part of the communication.
Krystal Vivian: I think That’s wonderful. I think that’s great advice. Um, let’s talk about friends and how do we have that conversation with friends or how do we help our kids? But I see that as
Angela Henry: client led again. Yeah, go ahead. You know, I think that just goes back to. Giving them as much autonomy as makes sense and as able, given their age and their ability, I think they have the right to be able to disclose who, what is happening for them.
And behind the scenes we can have conversations as parents or as therapists. How does that look? What does that look like for you? What do you feel comfortable with? Uh, and allow them to really take that
Lindsey Forsyth: lead and remember that sometimes they’re not gonna say, Hey mom, here’s what I’ve said to my friends about my condition and blah, blah, blah, blah, blah.
Right? Sometimes it’s like, so and so said I was a creep today, mom. That’s how the conversation starts. And to your point about curiosity, so my son had ticks after he got the flu shot, so every time he would, we stopped giving him the flu shot. That was his big trigger for ticks. And so he was a fifth grader walking through school sniffing.
That was his tick. And some child who did not understand his condition and probably wasn’t even trying to be mean, let’s just lead with, you know, the benefit of the doubt was like, that’s kind of creepy. Why do you do that? And he came home and that was, he said, somebody called me a creep today. He didn’t say, my sniffs are really bothering me.
I’m, I can tell I’m having ticks. And he knew at that time. And so I oftentimes will give him like, okay, like let’s think through the options. How do we deal with this? We have option one, we do nothing. And you know that you’re just, it’s okay to sometimes not have everyone understand you. Option two, you have three weeks left of school.
A lot of the people who know you the best know that because we’ve had these conversations with, you know, with your permission that you have that and you know they’re there for you. Maybe let them know, you know, I might need you to just, you know, like, be on, be, be with me, just be with me. Um, or you know, you can talk to the teacher and he’s, his idea with his teacher was, I’m going to get up and give a, a talk about PANDAS to my class.
Wow. Yeah, because he was going to have kids. Some kids do that. Like they
wanna do that. Yeah. Yeah. And it’s part of their cathar cathartic work. Right. It’s like therapy and they’re providing so much education. Yeah. That’s amazing. And know
every kid in his class for the last, you know, three years of his schooling at that school.
Knew what PANDAS was, knew he told them all about. We had other teachers that were in the room for the presentation and they were like, I learned so much from your kid about what IVIG is and what it, the infusion feels like. And he felt so seen because he has a captive audience of 25 kids. And this is not what every kid is gonna do.
But he took a really bad situation and one that really hurt his feelings and he made it really cool because his teachers knew in the background. All I had to do was just do a quick like email. Like, Hey, we talked about this. Brady thinks he’s ready to talk about it. And she’s like, all right, let’s do it.
So giving them options of like, okay, if I were in your shoes, there are about a couple ways I could handle it, but what would you like to see happen? Yes. Um, and to your point about like maybe if they’re younger, having conversations. High level, you don’t have to go into the nitty gritty, but with other kids’, parents.
So for example, we have a lot of kids that we work with who suddenly will not hang out with their best friend. Best friend is offended by it, but best friend’s parents are really offended by it because 9-year-old girl is basically ghosting other 9-year-old girl. And that parent’s like, well, what did my kid like?
Did we offend their family? What did my kid do wrong? Oh, they probably moved on to other friends. Like you know how the assumptions go in just the world in general. You might need to tell the other family. Okay, we’re having a hard time even leaving the house. This is not a you thing. We have a couple kids I’m thinking of right now off the top of my head that their parents know when they’re flaring, when they are with friends or when they’re without friends.
Like she really does not want to be around people, around noises does not want to be social. Probably some shame. Um, so. When things are going well, I will get indications from that. Mom, look, she’s hanging out with this friend or that friend, and that’s how they kind of celebrate the things going well. So every child’s gonna be different, but age appropriately.
Yeah. Needing to make sure people kind of know like, this is not a you thing. Right.
Angela Henry: And, and, uh, I’ve had clients be able to decide that they wanna get up and give that talk to the class when it’s with autism PANS. PANDAS, yeah. Tips, right. OCD, lots of different things. Ht Yeah. Yeah. All, all the stuff. Um, and sometimes if they’re not comfortable with that, they might be comfortable with, um, just using a big word like, oh, it’s a neurodevelopmental thing.
Yeah, you’re right. And, and when you hear like a 9-year-old say that you’re like, mm-hmm. Like, I wish you could see my face. Like, huh. Yeah. Um, so there’s no good comeback to that. Right. So, uh, the other kid hearing that is just gonna be like. Mm-hmm.
Lindsey Forsyth: Just
Angela Henry: be like, I don’t know what they’re talking about. Yeah.
And now I feel stupid and they’re gonna walk away. Yeah.
Lindsey Forsyth: Yeah.
Angela Henry: So,
Lindsey Forsyth: but you’re right though. Like, and not every kid is going to be like, I’m gonna present it to my class. Like, this was years in the making. But he, he will say, oh, that’s a tick. Do you know what ticks are? And then they’re like, no, what are ticks?
And then he realizes the kid wasn’t even trying to say he was a creep. Right. He just said That was a creepy sound you keep making. Right. Because kids don’t have amazing vocabulary for adjectives. Yeah. And sometimes
Angela Henry: they are being unlined.
Lindsey Forsyth: Yeah. So, but I think we have
Angela Henry: to deal
Lindsey Forsyth: with that. If you have the question, if you’re like, have you ever heard of a tick?
And they’re like, no. What’s like the, the bug? No, actually it’s this thing. And they’re like, yeah. All right, cool. What’s for lunch? Right, exactly. So it doesn’t have to be this big thing. Yes.
And
Angela Henry: the more I’ve, I’ve found, the more that the child is able to normalize whatever the challenge is and to just be like okay with it, that allows other people to do the same.
Lindsey Forsyth: Yeah, for sure. Yeah. Yep. Yeah. And then again, think about if you do, if you do say, oh, it’s a tick. Do you know what that is? That’s advocacy. Yeah. You know, you’re advocating for yourself, but you’re also like that person now knows. Yeah. Some kid kids, the next kid they meet maybe won’t be called a creep.
Exactly. You know? Yeah. That might be like, oh, they must have a tick. Yeah. Hey, do you have ticks? Exactly. Oh, cool. My friend has ticks. So, yeah.
Krystal Vivian: Yeah. It can be positive. All of that is to just, I mean, that just underscores this whole, the whole point of this conversation, which is conversa. These are tough conversations to have.
But it’s, they’re very important. Mm-hmm. And they can ultimately communicating, especially how your child wants to communicate. It sounds like, to me, like to wrap it up, is that communication is just really critical and let your kid let your kid lead the way.
Lindsey Forsyth: Yeah. And if, and we have to remember too, there.
This might shift your dynamic in how you have to approach things as a parent, because not every family has a long history of collaboration with their kids, right? Mm-hmm. Like there’s a, a hierarchy for whatever reason, um, even among siblings sometimes, but it might require you as a mom or dad to really change the way you look at the family dynamic.
That it feels natural to allow your child that autonomy and that opinion. Mm-hmm. I just wanted to recognize that because like I think when we get stressed out, we go to our most primal learned through our entire life coping mechanisms, and sometimes that can look like wanting to control more and we might need to name that to tame that and let that let you like just know it’s happening and realize that that might not be the best way.
Yeah. Like you have to sometimes. Be what you wouldn’t be open to normally.
Krystal Vivian: Yeah. That make sense? Yeah. Okay. Absolutely. I think so. Any final thoughts or pieces of advice for families before we wrap up?
Angela Henry: Hmm. I feel like there could be so many. Mm-hmm. Just be able to be present, come with curiosity, Lindsey.
Hears me say this all the time. If you’re not in a place of curiosity, you’re in a place of judgment.
Lindsey Forsyth: Here you go. Okay. Well, and I think long, long-term scheme of things, my son is so self-aware and so good at communicating what he needs and so good at understanding his own emotions. And it’s not because he was born that way.
Angela Henry: Yeah. He had to accidentally yes.
Lindsey Forsyth: Learn
Angela Henry: and work towards this. Through something really hard. Yes. Not that we wish for the hard, right, but look at I, you would say, look at the silver linings. Mm-hmm. Yeah. Look at the beautiful things that come from hard if we allow ourself to notice and take them in.
Lindsey Forsyth: Yeah.
Well, and he’s just a teenager now. He’s becoming a teenager with real life teenage things, and because we had so much practice talking about what matters to him. In the zone of PANS/PANDAS, we have had the reps that we need to talk about real life things with openness. We still sit in his bedroom at night before bed and talk about what was great that, what scared you today.
’cause he’s so used to talking about what scares him. Yeah. So you gotta a, a man who’s one day going to be maybe a spouse. That’s what I’m just over, over here crying about
Angela Henry: Lindsey, because I’m sitting here thinking like. Like, this is what’s going through my head. You said he’s a teenage boy, but I’m like, he is a teenage boy.
That’s becoming the kind of man that I don’t have a daughter, but if I did, I would want my daughter to marry. Yeah.
Lindsey Forsyth: Yeah. And it’s, and, and it’s, thank you, PANDAS. Really, it gave us an opportunity to, I wouldn’t wish it on anybody, like you said. It there. There are so many silver linings of this. Yeah. This can be a huge, not only part of their own growth and development, but you are building a relationship where they’re like, you know what?
When the world felt like it was crumbling down on me, my mom got under that world with me and held it up with her triceps. Right? Like she was there and she’s still there. And if we can get through PANDAS together, we can get through just about anything together. Mm-hmm. So I’m just, the last thing I wanted to say is it can be so good you can take the lemons and you can squeeze some really sweet lemonade because of the way you have very specifically set out too.
Make this be for your family.
Krystal Vivian: That’s amazing. That’s it. That’s powerful. Well, thank you both for Thank you, your insights and your thoughts. Uh, that was really powerful. Um, I wanna cry. Uh, on that note, we like to end every episode of flying through Fog with a story of hope to let our listeners know that if you’re flying through the fog right now.
There is hope. There are good things in the future. There is some sweet lemonade that you can drink and the fog is just keeping you from seeing it right now.
Story of Hope: Hi, PANDAS parent. I just wanted to encourage you from one parent to another that you are not alone. You are seen. We know that you’re out there. We know that you’re struggling, but know there are prayers being prayed for you right now.
Know that this journey that you’re on will not last forever. One day you’ll be able to look back and say, our family was in this place. Our child was in absolute turmoil, was suffering. Our family was struggling significantly. But one day you can look back and say, that was then. But now a miracle has happened and our child is now healthy and is getting healthier day by day.
This is not a sprint. This is a marathon. Stay encouraged, pray. Reach out for help. Get support. Just know you are seen and you are not alone.
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 you once thought you weren’t gonna be able to.
You can record a voice memo that’s 60 seconds long or shorter, or write out your story in a couple of short paragraphs for us and we can read it on the air. Please email it to PANDAS@federatedmedia.com. And we may choose it for a future episode.
Thank you again, Angela and Lindsey for your time today. Thank you. Thank you, and thank you to you, our listeners, for spending time with us today. If you found this episode valuable, please leave us a rating and review on your favorite podcast app. It’s the best way to help other families get access to this information.
Well, maybe the second best way, because the first one is to share it directly with family or friends who you think would find it valuable. Flying through Fog is edited and produced by Tommie Lee. Special thank you to Legacy Heating and Air for your support of PANDAS Michiana, and this podcast. I’m Krystal Vivian.
We’ll be back next time with more interviews and conversations on 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:
