How Mold Testing Changed Everything for One PANS/PANDAS Family
This is the transcript of the fourth 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 lovely co-host, Lindsey Forsyth, the mom of Kids with PANDAS. Welcome Lindsey. Thank you. Thank you. PANS and PANDAS are not straightforward diseases. If you caught a cold, you could likely figure out about when and where you were exposed to the virus and your symptoms would follow a fairly predictable pattern from that first cough all the way until full recovery.
But as we all know, PANS and PANDAS, they’re not like that at all. It can be difficult to figure out the exact moment symptoms started and especially what triggered them in the first place and what triggers them going on. And every family’s journey is different. We believe that one of the best ways to help other families flying through the fog is to shine a light on individual journeys and share their family experiences.
Today we’re joined by Tricia, a mom of three kids, including two with PANDAS to share her story. Welcome, Tricia.
Tricia: Hi. Thanks for having me.
Krystal Vivian: Thanks for joining us. I’d like to begin with, let’s talk about your, your two kiddos with PANDAS. Can you tell us about the symptoms that they experienced? And your path to getting a diagnosis for them.
Tricia: Yeah, so, um, my son is the oldest, um, and he was about five years old whenever he presented with tics. Um, both motor and vocal tics, mostly, uh, facial tics is what we noticed at first. Um, he was, uh, kind of came on, not kind of, it came on suddenly. Um, he got really anxious, started having some, um, paranoia of different things, specifically like outlets.
He was really worried about the outlets around his house. Um, and then started to do different behaviors at nighttime that were like repetitive. So, um, telling us goodnight several times. Lining up his Easter eggs in a certain order, and it seemed very rigid. Um, and it came, all of a sudden we thought that it was anxiety for school.
He was about to start school. Um, and so that’s, that’s like the beginning of what we noticed. It was gonna be another year until, uh, sorry, another five years. Until we actually, um, were, until he actually got a diagnosis. Wow. Um, so it took a very long time. Um, but in the course, like between that point and getting the diagnosis, we tried several different things.
Um, and so he, um, originally had gone to, um, we had a team come out and do a full evaluation. Um, we thought maybe it was, he was possibly on the spectrum, um, and had a DHD We assumed that there was some A DHD there as well. So we had a team from Riley come and do an evaluation of him. Um. At the, ultimately he, uh, they said that he, um, did have a DHD.
They said that his did not qualify for autism, um, because he had, um, high like intonation of hi of voice and he had a sense of humor that was, those were like the two things that kind of ruled him out. Um, they said that there were a lot of OCD behaviors and that they would put that diagnosis on him, but he was so young, they didn’t wanna slap a bunch of, like little diagnosis all at the same time.
Mm-hmm. So they gave him a generalized anxiety disorder, um, diagnosis. Um, throughout that time the ticks like continued and so, and they progressed. Um, they got worse. So, um, they were facial ticks at first, then they started to be, um, like vocal clearing his voice. Um, then we started to see the hand motions that were happening.
Um, and so at that point, um, we also did, uh, an MRI, was it at home or in the hospital? It was in the hospital. Okay. For 48 hours. Wow. Um, and he also had another brain, MRI. Um. So the one that was 48 hours, they had me, um, click a little clicker every time I thought I saw a tick so that they could look at the background, like the activity that was happening to see, we thought maybe it was absent seizures, essentially what it was.
Um, and they said no, there was no absent seizure. Um, uh, that, that were happening as, um, we were looking at the tape. Um, the brain. MRI did show that there was background activity is what they called it. Um, I see that come up in a lot of these, um, hands PANDAS groups too, that that is kind of a similar thing that they talk about.
I don’t know if it looked into all of that, but it was enough that they said it wasn’t a big, no medication was needed. They just didn’t really give us any information. So, um, fast forward, the ticks continued. Um, we ended up taking him to a, um, neuro. Psychologist and the neuropsychologist, um, again diagnosed or agreed with the, the A DHD, um, the, uh, diagnosis.
And they said that, um, he was officially diagnosed with Tourette’s because he had had, um, a year of motor and vocal things. Um. So they put us, was that the only, the only qualification was that he had a year of ticks. You had to have a year of, um, and it had to be both, so it had to be a full year of ticks and it had to be both motor and vocal.
Okay. Which he’d had, you could
Lindsey Forsyth: see how those mm-hmm. Diagnoses. Can get convoluted. Yes. When you have somebody who’s been dealing with a hand as diagnosis undiagnosed, but has gone on for some time. Yeah.
Tricia: Yeah, a hundred percent. Um, and so he ended up putting us, or suggesting a CB therapist, um, Angela mm-hmm.
Who, um, at that point had a wait list of like a year and a half. So we put our names on the wait list and then, um, luckily it was about nine months, we didn’t have to wait the full time, about nine months. And then she, um, we began meeting with her and at that point I really just thought, okay, we had started to notice some other behaviors.
Um, a lot of like very rigid behaviors, um, but more emotional dysregulation. Um, it just increased. Um, but then sometimes I would feel crazy because it felt like it would wax and wane, right? Mm-hmm. I would be like, we really need therapy. And then I’m like, maybe we can get off the wait list. Maybe we don’t need it after all, and then it would like wake up again.
Um, and so at the time that she came into our lives, um, we, we did need her. Um, he was kind of in a low. So we, but it, the same kind of thing happened. Um, she, uh, sometimes in therapy he would, it would feel like we were making progress. I felt like we were having good conversations and then it would be like, we can’t get through it.
All peoples were dilated. I just didn’t, I didn’t know, I didn’t know about any of, I had never heard of PANDAS. Um, and so. While this was happening, to introduce my daughter’s situation while this was happening somewhere between, um, my son’s Tourette’s diagnosis and, um, meeting with the therapist. Can you, how old was
Krystal Vivian: he when he got the Tourette’s diagnosis and when he met with a therapist?
Tricia: Um, so was, so we have an understanding
Krystal Vivian: of timeline,
Tricia: so he would’ve been time.
Krystal Vivian: He was 10. So he’s 10.
Tricia: So because he, it was five years. So at five is when we saw the first symptoms. Yes. And at 10 is when he got the Tourette’s diagnosis. At nine, he would’ve gotten the Tourette’s diagnosis. Okay. Sorry. And then at, so five, he had the symptoms at nine, he got the Tourette’s diagnosis nine months later.
So right before he turned 10 PANDAS Yeah. Is when he was diagnosed with Panda. Well, is when we started meeting with Angela. Okay. So then as my, as we were meeting and these symptoms were, you know, waxing and waning, even while we were with her, um, my daughter had also started presenting with tics. Um, doesn’t make me mom of the year to say this, but I really didn’t even like, wanna address it.
I felt like in that moment, like, if I just don’t, like this can’t be happening. Like who has. Like, what are the chances of having two children with, with Tourettes? Right? Like, I, I just didn’t feel like I had, I felt like I had to be missing something. Um, and so I thought maybe she was just mimicking her brother.
There was this like a point within those months where she literally looked at me and said, mommy, can you go take me to the doctor and figure out why I keep making these laughing sounds and I don’t want to? And I was like, I mean, wow. It just, she was so. So with it, you know? Yeah. To be able to explain some of that.
Um, my husband had also noticed, we like didn’t even talk about it together because we were like, we felt like let’s just knock out one thing at a time. Right? Yeah. Like, let’s take care of this and then wrap. And I’m happy you said
Lindsey Forsyth: that because I feel like our listeners need to hear that. Um. Sense of I can’t take one more thing. Or am I overreacting or am I underreacting? I think that you touch on what a lot of people feel and maybe don’t say, and so that vulnerability and that transparency I think is, is super helpful and that’s why like when people do have questions and it’s not something I can speak to, I do ask Bishop.
I can share her information because it’s so helpful when people. Talk about the real stuff. Yeah. They don’t sugar coat any of that. Mm-hmm. Yeah. Because I think any parent who has multiple kids, which we know is a genetic, you know, predisposed type of thing, we have those moments of like, please, I, I, I can’t take one more thing.
Yeah. You know? Yeah. 100% percent. Like
Tricia: how is that? How, yeah, how is that thing? Um, so she started, so eventually it kind of all came to a head. So, um, my, it would’ve been July of 2023. Um, it was a very rough summer. Very, very rough summer. Every, all the emotional dysregulation was coming to a head. All of the, um, all of the, um, my daughter had started to have accidents multiple times a day.
I mean, she at that point would’ve been in first grade, um, and. I mean, she’d been, she potty trained herself basically at too, right, right. So, um, so socially that was a huge effect. Um, was not sleeping through the night at all. So all of these things were happening and we’re, we’re looking at it. And I remember sitting down with Angela in the middle of July and saying, like, like just breaking down and saying, okay, I’m just gonna tell you about, about, um, my daughter.
This is, this is what’s happening with her too. Clearly it’s not, it’s not my son’s issue. This has to be me and my husband. Like it has to be something that we’re doing wrong because I can’t, like, it’s not just one of my kids anymore. Um, and she was so good and so kind, and was just like, you know, um, have you ever heard about Pan?
Have you ever heard of PANDAS? Um, I had not. I had never even heard of. I’ve never even heard the word before.
Lindsey Forsyth: And all of these symptoms would seem so unrelated. Yes. If you wouldn’t know that they’re totally related. Yes. Yeah, you
Tricia: really would. And so you feel like you’re gonna knock out one, right? Mm-hmm.
Take care of the rets. Yeah. And then I will take them to therapy to deal with emotional dysregulation. ’cause knock, we’re making you anxious. Right. And maybe we need to feel, you know. So, um, but then we see these overlaps between the two kids. And so, and she was like, okay, so I have this, um, webinar. You were actually on this one.
Mm-hmm. Um, I have this webinar. It’s a few hours long, just like at your, you know, like when you have time, why don’t you go home and with your husband, you can listen to it and then get back with me and let me know what you think
Lindsey Forsyth: and we can drop that in the notes for this. Yes. It’s called, I Suspect PANDAS, now What?
Yeah. Yes. Yeah.
Tricia: I went home. My husband and I couldn’t, I mean, we right away, I think on the way, on the way home actually we started and I couldn’t stop listening and I was like. They check every single box. And it was just, it, it was mind blowing to me that that was out there and that nobody had ever brought it up.
And we had been to countless, I mean, I mentioned the MRIs, but we had been to pediatricians, we had been to, I, I searched the internet for random things. Right. But I, I, I just couldn’t find any, I mean, I didn’t have anybody that just came straight out and, and showed that how all of the symptoms were, um.
Um, so that was the point that we met with Dr. Vic. She said, um, if this is something, you know, you think that could be a possibility, then why don’t you meet with him for consultation? And so we did. And um, that was the beginning. We did the blood work. Um, and I don’t know,
Lindsey Forsyth: he asked questions about medical history and like.
Yeah, their birth history and their, you know. General symptoms of other things that he would connect clinically for a diagnosis that as moms, we wouldn’t know to bring up. Mm-hmm. Right. A
Krystal Vivian: hundred
Tricia: percent.
Krystal Vivian: Yeah. Did it feel like you were getting like 30 million questions thrown at you? Uh,
Tricia: so many questions.
And it’s also like you’re, you have mom brain and so you’re trying to like piece it all together and go back and, and see which factors would be relevant and it, it was just nice. To be honest, to just have somebody, I didn’t have to like, think about what’s relevant. He just kind of like quarterbacked it.
Pulled out all the stuff.
Lindsey Forsyth: Yeah. Yeah. Um, and he’s a developmental pediatrician, so he understands autism. He, I mean, he understands the differential diagnoses that can sometimes blend into where you think as a parent with your filter. I’m, I’ve, I, this is PANDAS. Mm-hmm. And there are times that he says, well, actually.
The, the danger is looking at it just through the PANDAS filter. Like sometimes you have to have somebody that can rule out other things that could be contributing. So he’s fantastic. Yeah. As a diagnostician. Yeah.
Tricia: Yeah. No, he was very, um, he brought in their, like their birth stories. Um, he asked a lot of questions about that.
Um, both of them were preemies, um, growth restricted preemies, you know, and so, um. There’s always a lot of like guilt, like, did I do this to them or did I, you know, is Tourette’s because, you know, or Tourette’s or whatever it was, whatever diagnosis. Is it because they, you know, were born early. Is it because my placenta didn’t work?
Is it because, um, but he was just very reassuring about, again, the genetic component. Um, he asked a lot about, you know, parents, um, their grandparents, um, and so. Um, at that, I mean, looking back, history of
Lindsey Forsyth: autoimmunity in the family, things like
Tricia: that was a big, um, I mean, yeah, both set, both of my husband and um, myself, we both have, um, parents with autoimmune issues.
Um, and so it just makes sense, right? Um, so we thought at that point, okay, this is gonna be like. Okay, we’re gonna, we’re gonna jump in, we’re gonna, you know, follow this protocol and then check this off the list,
Krystal Vivian: right? So yeah, let’s talk about that. So from done, from diagnosis, then. Did you immediately then go to treatment and how did, what did that look like?
So
Tricia: we tried to go really fast. So that was back in October. They did, relative
Lindsey Forsyth: to other families that we’ve worked with, they did not waste a second of time.
Tricia: It was like, I mean, at that point your world is like imploding and these, like, I just, I was looking at my, my kids’ faces and I’m like, you are not the same person.
Right? Mm-hmm. And then they would come back too. It felt like, almost felt like Alzheimer’s, right? Where it’s like you would lose them for a little while and then you would miss them, and then they would come back and then you’re like, my babies are back. I knew that you didn’t change altogether and then you would kind of lose them again.
And so it just felt like the time that we had them back was shortening and time is a essence. Mm-hmm. It’s their childhood. And so they, Dr. K had suggested that we remove tonsils and adenoids. Um. Their, uh, past rep numbers were crazy off the chart. Um, and so we did via blood work, you need that via blood work.
Yeah. Um, and so we did, um, antibiotics and then we did, um, oh, and then we went to tonsils and adenoids. So at that point we thought that we were going to like, um, really. Um, eradicate Yes. But like, kind of work the system for us. Like we were gonna wait till January 1st, uh, to get tonsils and adenoids out.
Right. Okay. Yeah. ’cause I mean, for two kids it’s a lot of money. Yes. All this stuff is a lot of money. We were like, we’re gonna do this. Um. Uh, we waited at the beginning of the year, hit the deductible. Yeah. And then like, I mean, they had lived with PANDAS for long enough.
We, we knew that they were most likely gonna move towards IVIG, right?
Lindsey Forsyth: Mm-hmm. Can I interrupt one question? Yeah. Mm-hmm. For parents who are on the fence for tonsils and adenoids, we see a lot of them on the parent groups. What has your experience been? Would you tell a parent to do it or not to do it? Why or why not?
Because I think that’s an important mm-hmm. Thing to let parents hear.
Tricia: Yeah. I mean, I, and I did go back and forth. Um, I think seeing the numbers in their blood work was like, for me, a no brainer. Um, in the sense that they had had so many past infections that I had no idea. Mm-hmm. My son, I mean, both my son and my daughter never, ever had a single.
Typical strep symptom ever. They never had a sore throat, they didn’t have any white patches, all the stuff that you would typically see.
Lindsey Forsyth: Yeah. Which is standard for a lot of PANDAS kids to have no symptoms.
Tricia: And that’s where you would, I mean, typically a doctor will test you once you go. You go in and you say, I have a sore throat, right?
Mm-hmm. Um, and so they never, ever had had that. I don’t even know that. Um, yeah. Um, so, and my daughter had, had, she had had, like, she’d been throwing up. She had had some other, like, stomach issues. I thought, you know, maybe she had had a peanut allergy. So I thought that maybe it was like, I don’t know, some type of allergy we were working with or something.
Um, but nobody’s just gonna naturally culture for strep whenever you have stomach ache. Right. You know? So, um, anyway, so, um, we so po after that, to go back to your question about tonsils and OIDs. Um, after we have not had, I think my do, my son has had strep twice. He actually found out that he was not taking his antibiotic.
Oh, interesting. Another whole long story, but, um, I guess that’s a thing like eye medicine. I didn’t know that that was a thing, but we went through that phase for a second. Um, and so I, I attribute it to mm-hmm. That, because after we, we got back on track, he had not, he has not had any. Infection since then.
Um, and you know that because as a parent pan, this kid, she has not had any since then. Okay. Um, he had, um, but we caught it fast because we now take him in when his behavior fell off. Right. We were able to take him in. He, we, when we do the rapid test, he almost always will come back negative, and then the cultures then help be positive.
Um, I would say his teacher actually caught it once for us because she worked so closely with us, like behaviors. So she, she would be the one to tell us like, you know, he seems a little off and it confirmed like for us. Okay. We thought so too at home. Um, but you don’t wanna run him in every single time that’s happening.
And, um, and so that was helpful,
Lindsey Forsyth: but, um, so important delineation to make. Yeah. People like Tricia and I, we bring our kids to get strep tests when they seem to have neuropsychiatric flares. Yeah. Not when their throat hurts. Not, or when they’ve been exposed to people. Right. Exactly. When I know that there’s a known case.
Mm-hmm. But it’s, it’s, it looks different now that we know what to expect and we know the new normal, we bring our kids in when their behavior seems like they’re flaring. Mm-hmm. Just prepared. Yeah. No, that’s a,
Tricia: that was a big shift, I think, but has made a big difference because I think we caught it. We would’ve never, ever checked him for that before.
Um, so we did the tonsils and adenoids in January, the very first date that they had, and we were like, we’re gonna knock this out. We’re gonna wait four weeks. And then, you know, meanwhile we were meeting with Dr. K. Um, he did suggest IVIG after symptoms did actually improve a little bit for, um, my son specifically, um, after tonsils and adenoids came out after tonsils and adenoids and I was like, maybe, you know, he might not, he might not have to, um, like move forward with any other treatment.
But it just kind of, it wasn’t baseline. Um, and so, um, he, Dr. K did suggest IVIG, so, but we had to go through interim to get it approved. Right. Um, and that literally took from the beginning of February until their first. Treatment was in August, so we had to wait another half year,
Lindsey Forsyth: and you had to go all the way to external appeal.
External
Tricia: appeal, and every single step of the way. It was, it was just, it was awful. So, um, it was a, there was pushback and, and we were really a good case, to be honest. ’cause we had two kids, same diagnosis, same very similar symptoms. Um, and there would be times that they would come back with different reasons why one kid was not approved, um, then the other kid.
Right. And then you would, um, respond to the appeal and then it would, it just, it made you feel crazy. Like it felt like, what am. Seeing here. Um, but I, I mean, I think there was a couple months where I was on the birthday with somebody, um, and it was finally the, the external appeal where they were like, this is like a, a no brainer.
Um,
Krystal Vivian: yeah, you finally, you finally get somebody to see it. Who on the outside
Tricia: of the company, the outside of the company, and it felt like, okay, I’m not crazy. Yeah. I mean, thank God for you though, Lindsey, because. I felt like, um, it, it really did help to have somebody who had gone through something like that before because you would feel crazy.
Mm-hmm. If I had nobody else to, like, if I thought that that was normal.
Lindsey Forsyth: And not to minimize either of our journeys, but we were at least at a place where our kids had somewhat stabilized by then. There have been plenty of people that we’ve worked with that. They’re trying to keep their kid from going under the water while fighting insurance for six understand, six months, like, right.
Mm-hmm. I can’t imagine either. Mm-hmm. I mean, I think that’s what gives war, who we had war Bakari come and do an interview. Um, and with Claimable, that’s what gives him the, the fire. Yeah. Is just seeing these parents trying to survive this alone is a hard, let alone, trying to convince a different person every time at the insurance company that you need, you know, the,
Krystal Vivian: you’ll never talk to the same person twice, never.
Tricia: Nope.
Krystal Vivian: And it’s just a maze and loopholes and Oh, that’s frustrating. Yeah.
Tricia: And all of the typical, like, I’m gonna take down your number and your name and all of that. It doesn’t even work when there’s no, there literally was no number to even, no central number to call, which is the way it frustrat. But yeah.
Um, yeah, it was, it felt, it felt crazy. So August then was the, the first IVIG treatment. Um, and that was huge, huge for us. Um, uh. Literally after that, my daughter has not had another accident since after that first I VG treatment. That’s awesome. Wow. She was having them multiple times up to five times a day.
Um, and it that, if I could say that was like one of the, for her that is like the biggest thing. Mm-hmm. Um, for, um, my son, his, we actually were just talking about this last night. Um, was like, you know, those things. Um, the ticks that I used to talk about, he’s like, I really don’t have a much Mm. So it’s one thing for me to recognize it mm-hmm.
But for them to like start to put it together ’cause it’s hard. Yeah. Like they’re, it’s, it’s hard. The treatments are hard. Uh, things you miss out on in life is hard. Um, but that is like one of the, you know, one of the big things that, um, has, has changed. Um, as far as emotional dis like regulation, um, we’re still working through a lot of that.
Um, I think that the fact that between them, the onset of PANDAS and their treatment, I, I do think that that’s a big factor. I think there’s a lot of, probably damage or a better word than that, but like I do think that there’s a lot of effects from it lasts. So long. Mm-hmm. And now having treatment, um, for sure.
Sometimes I get frustrated when I even think about those last six months and how things escalated when insurance, if they had taken care of it when we bought it, like when we did know half of a year. Right. Like that could have made a big, um,
Lindsey Forsyth: but you can’t go back, right? No. And it’s also trauma, right?
Yeah. So like let’s say you have a perfectly healthy child with a perfectly healthy brain that goes through something. Scary and unusual and mom and dad are trying to figure out alongside of you. I think it’s trauma for everybody, but there’s some healing that needs to be done just for the standard child too.
Yeah, no, a hundred percent. I like that you brought that up.
Krystal Vivian: Yeah,
Lindsey Forsyth: absolutely.
Krystal Vivian: Um, I wanna talk about, I wanna get into the mold conversation now. Mm-hmm. Because that has been part of your journey and that’s something that. You know, some people gravitate towards, some people go down that path and some people don’t.
Lindsey didn’t go down that path. Mm-hmm. But I think it’s really valuable to hear your story and your experience. What made you seek out, what made you start looking at mold as a trigger for your kids?
Tricia: Yeah, so back in, uh, so the summer that I told you that we finally, like, everything kind of came to a head.
So in June of that summer, we had a humidifier leak in our basement. Um, and I had heard about mold back up for a second. So I had heard about mold, like, um, you know, throughout, I mean, throughout the years. And I, I honestly always kind of. Uh, felt maybe like it was a little crunchy, like, um, it’s just, you know, these moms who maybe are a little overprotective and, um, but it doesn’t, you know, everybody, there’s mold everywhere is what I would think.
Like there’s no way to ever like be away from mold. So like why try to control something we can’t? So that’s kind of my, my lens is going into it. So in June of 2023, we had a humidifier leak in our basement. Um, we came across it and, um, I mean, it, it was in the middle of our, the middle of the basement, so it kind of went throughout the whole thing.
So we had to remediate. Mm-hmm. Um, and, uh, rip everything out Well. We didn’t know much. We just kind of trusted insurance at that time because we don’t, we didn’t, you don’t know what you don’t know. Mm-hmm. Um, and so we trusted their company. We didn’t really look into it much. They sent a company out to mitigate the WHO week.
Um, and so when they did that, it took, they had their equipment in our basement for five weeks drying out our basement. Wow. Five weeks Now, knowing what I know now, it’s 24 to 48 hours is how long it takes for mold to grow, right? Yep. So we didn’t even get someone in our basement until about five days after we had reported it.
So at that point, mold’s already. It’s already there, right? Yeah. Um, but then you wait another five weeks. And I just think it was a, it just, it, it was like a perfect form. Mm-hmm. Um, so we went through the typical, you know, I was more frustrated. I didn’t have my basement back, not necessarily the mold was growing in my house.
Um, so we went through the whole like mediation throughout the time. In hindsight, I can see that there were so many mistakes that were made as far as cross-contamination, far as like, I mean, the spores that were spread around had to be crazy. Um, but at that point we, we didn’t know. So we just kind of fixed the basement up.
They dried it out. We fixed it up. Um, about November-ish of that year, we were in the basement kind of doing some things and I’m like, my eyes really burn. Like, I don’t know, my husband’s like, Hey, I don’t know. I feel fine. You know, the kids are down there playing and I’m always a little sensitive, so I thought, maybe it’s just me.
Thank goodness’s. Yeah, let’s hire someone, um, to just come out and do some tests. So we’d heard about like the plates that you can buy and we’d heard about like. Companies that will just come out and like do a quick care test. Um, and so we hired, you know, somebody we thought that looked like a clean, good company and they came out and basically said, oh, you know, it’s okay.
Like, we had a little bit of high aspergillus, but, um, nothing like, awful. Like they pointed out a few spots. Um, and you know, the, the, what most people say is like, you have like just spray bleach on it. Um, that’s like a typical thing people think to just get rid of. Mm-hmm. The mold. You spray bleach. Yeah.
We’ve had mold eats, bleach. It eats bleach, and then you’re breaking up the spores and spreading all the chemicals all over. So even if it’s dead, it’s not, it can still be poison like poisonous. Right? Mm-hmm. It’s still releasing these chemicals that affect my kids’ brains, so, um. This was all happening. And, and keep in mind, I’ve been very guilty of seeing anything in my basement.
And you just spray it, right? Mm-hmm. You mold, that’s, I I think that’s what
Krystal Vivian: 99% of people who Yeah. Haven’t encountered anything serious with mold. Yeah. Would do. You would do that? Get some kill.
Tricia: spray over it, you just like, of course if they can’t fly in the air, then you’re fine.
Yeah. I’m gonna go home and test
Lindsey Forsyth: my whole house out.
Tricia: No, I know. But the more you know then, so I would learn something and then it was like I couldn’t go back. Like then once you learn it, you’re like, I can’t go backwards in what I know. Mm-hmm. And now I can’t not connect it. Right. Um, so that happened and then I, I joined this, uh, Facebook group of mold, um, moms and, you know, a couple different ones.
Some of ’em I felt like were way over the top and some I felt like were like, it’s not that big of a deal. But it was really interesting and I learned a ton. Um, and so I started doing more and more research, um, and change. The Air Foundation was one of the big places that I would go to for. Um, like research based information.
Um, and it was really helpful. Um, and one of the things that they suggested is that you find an IEP, so an indoor environmental professional mm-hmm. Who’s a third party, um, that would come and do a testing on your house. So they do a visual inspection and air inspection and a dust inspection with a DNA sampling.
Um, and so we had somebody, we found someone who would do that. They came in and honestly, it wasn’t that high in comparison to a ton, but it was in, um, levels that were not, it wasn’t in the green, um, or it was like borderline between yellow and orange.
Lindsey Forsyth: Mm.
Tricia: Um, I. Um,
Lindsey Forsyth: and you can, I just, yeah. Mm-hmm. So I feel like, correct me if I’m wrong mm-hmm.
I’m just trying to pull my side of the conversations together with what you’re experiencing mm-hmm. At this time too, you were talking to me about Okay. Like my proverbial peel back the onion that I’m mm-hmm. Constantly saying I got outta crisis mode. I went through immunology and, and I did some other things because I knew our kids were having some, some symptoms or some things that I’m like, you know, I kinda just wanna make sure there are no deficiencies.
Um, I was talking to you mm-hmm. About, you know, mold, but at this time you were saying there’s just some lingering, was it aggression or, yep. Okay. Mm-hmm. To where you were like, I just feel like there needs to be more looked at. Mm-hmm. So this is happening simultaneous to all of this mold stuff. Right. Okay.
Tricia: And so, and I was thinking at that time like, okay, so. As that is happening, I’m, I’m also in these PANDAS groups, right? Mm-hmm. And I kept seeing it come up over and over and over. I’m seeing PANDAS moms talk about how like, mold, the mold word just kept coming up. And I’m like, what’s the actual link? Right?
And then you’ll hear some people say, it’s not a big deal. Like, you know, that’s not something we can pinpoint. And then some people would say it’s the whole deal.
Um, what I appreciated what you said was that I. I just didn’t make it my deal at that point. Mm-hmm. Like, I, I just couldn’t, you know, you can’t sha because you can’t go down all the rabbit.
Right. So I think that you kind have to
Lindsey Forsyth: use that mom gut we talk about a lot. Right.
Tricia: And I, I think that that was a big, that was a big deal too. I honestly feel like had you shut it down.
Tricia: I might’ve just like not done it.
Tricia: Um. What I had in my benefit that I think, um, a lot of moms might not have is that I had an actual leak that led me to it.
Yeah. Yes. Um, and honestly the leak kind of a long story, but the leak wasn’t actually the big hitter. So we went through all the remediation or, uh, we did had the IEP come do all the testing, found that their numbers were higher. He suggested there were a couple big things like our venting of our bathroom was in our attic.
Not out, which it should be. Mm-hmm. So that can cause you know, the air. Oh my gosh. Yeah. Like your house to be a big problem. Um, there also was, so we ended up having to remediate the attic, um, get a new roof, which we were going to do anyway. Um, and then also, um, uh, like the basement. So we did, and after you remediate, you do like micro cleaning?
Mm-hmm. Which is basically trying to get all of the mycotoxins. All of the materials and the equipment, whatever. Um, so, but what led us to something probably bigger at that point was that, so we left for vacation. We were almost done doing all the remediation, and we got home from vacation and our, uh, dehumidifier had leaked into our kitchen straight down into the basement that we just had finished.
I was like, this can’t, like my life is, is this real? So, so at that point, um, it ended up being, I can’t believe I’m saying this, but it ended up being like actually a positive because it forced us to rip up some stuff in the kitchen. Um, and when we did, we found that there was in underneath a window, they had put the flashing in wrong.
And so in our kitchen and we ended up having. Me to like take care of that. Wow. But that was where I think a lot of the, the score counts. Um, were coming from the dangerous count coming from, and your coming, your kids spend so much time in the kitchen, right? Yeah. Yeah. Yep. And so I think that, you know, we couldn’t deny it at that point just because we had had the actual leak and kept seeing the overlap.
Krystal Vivian: Did you have to get any kind of special treatment for your kids after the mold, or was it just. Remediate the mold. Clear it all out. Yeah. Do every like, do all of that and then the symptoms go away.
Tricia: So one part that I skipped was back whenever we were having the IEP come to do the testing, I also wanted to see if it was actually affecting my kids.
So I’m big on testing everything, right? Mm-hmm. So I had them, we went through my Myco labs and did a blood test to check the mycotoxins in all of us actually. Um, the whole family, um. And we saw elevated levels in all of us. And now what I thought I would see is all similar ones. Um, but I didn’t see that they were all the same.
Um, but it’s not that, what I’m learning is it’s not that, that, um, clear cut. Yeah. It’s not like.
Krystal Vivian: Some might be more sensitive to the mold than others. Yeah. And
Tricia: you’re talk like where you spend time because all of the past, like the load that you have in your body doesn’t necessarily come just from your bedroom, for example.
It could come from school building or from a, you know, wherever you spend lot of time.
Krystal Vivian: I say all the places where you go on a day. Yeah. And we are all, none of us are in the same places for, for the thing.
Tricia: Right. So did then, so then they recommended, so fast forward after IVIG and after we remediated everything we did, um.
Tons of supplements, but we also did itraconazole is the big one that they say for detox or for getting it out of the antifungal, get out of your body. And
Lindsey Forsyth: is that something by prescription? By prescription, yeah.
Tricia: Okay. Yep. Um, so we did that. Did you use any sort of like a binder? That’s a good question because that is like the, the.
I think the overwhelming thing about mold to me is that just like with anything, you will have different philosophies from different doctors. And so when you’re coming into this and you’re trying to soak up all the learning and all the research, it would be really easy. It was really easy for me to just be like, they don’t have it figured out yet, so I’m gonna wait until you all figure it out and decide, and then I’ll take my approach.
Um. But what I found was I didn’t necessarily like fall into either category. Some people believe in binders, some people say no, it pulls too much nutrients out of your body. And so, and I, I feel like I’m not a doctor, right? Right. So I’m learning this all as I go and there’s so much to it. But, um, so we’re trying to take a multi approach, I guess is what, and I’m still learning.
Um, but we are on like, um, uh, yes, my husband and I are. For my kids, it’s, uh, I’m gonna mess up Flo.
Lindsey Forsyth: Okay.
Tricia: Is
Lindsey Forsyth: the name, um, I didn’t even know there were multiple approaches to this mold protocol either. Yeah. So you’re basically trying not to be shooting from the hip as a PANDAS parent and then. You go to the mold department and now you’re also shooting from the hip as a mold specialist.
Yeah.
Tricia: And you’re trying to learn about your, like, my environment. I know that we have to fix the environment, but that’s like a, like that’s a process that you wanna follow with integrity, otherwise you’re gonna mess it all up again. Right, right. So no pressure. And then you also have the, the health side of it.
Um, and so honestly, I, I feel like we’re still on, we just kind of emerged from the. Remediation phase. It feels like it was forever ago, but everything takes so long. Yeah. To get everybody to do their jobs. Mm-hmm. And to get everybody to like, on a schedule. Mm-hmm. Um, and so I feel like we’re now in the, like, we gotta remediate, I mean, our bodies,
Lindsey Forsyth: uh, I don’t, I’m not trying to put you on the spot Yeah.
And put you on blast, but I know a lot of people are super worried about expense when it comes to mold remediation. Is that a valid worry? It’s a valid worry. Okay.
Tricia: So I go back and forth, right? Yeah.
Sometimes I, I would feel like, well, we’re literally gonna have nothing left for our kids. Mm-hmm. Mm-hmm. But then I’m like, if your health, if you don’t have your health, you have nothing. Right. And I felt like we can fight insurance all day, but if we’re not, if we’re not doing this part, then is it going to, are we gonna have the, the lasting effect that we need?
Right. Um. I don’t know. The right choice, spirit choice, you know? It is, yeah. Yeah,
Lindsey Forsyth: yeah.
Tricia: Uh, I just, I think that what I’ve tried to adopt to is like the holistic approach, which is funny considering how I might have judged French moms a little bit in the past. I find myself full circle back in this place where I’m like.
I, I mean, they say that like 70 to 80% of your mm-hmm. Immune system is in your gut. Right. So it’s, it’s like I’m starting to see how everything fits together and it’s just not in these individual little, these. Little canisters, like I wish
Lindsey Forsyth: they were, you know? Yeah. And you bring a great point up about judgment and then realizing when you’re on the other side of it, like, dang, there might be a little kernel of truth to everything.
Yeah. Yeah. Because, you know, we have, I’ve got moms that I work with that like, if somebody wants to go more down the homeopathic route, I’ve got a mom that can tell you all about it. She’s been doing it with her kids. And guess what, it’s worked for them. Yeah. And I have gone western medicine, do the IVIG, get the tonsils out, all of that.
And it’s worked for us. Yeah. And you’re doing the mold stuff, and I have a couple other mold friends that are like, mm-hmm. They could write a book on it and it’s worked for them. So to your point, we all have, even just what are our own limitations financially? What are our limitations time-wise, sanity wise?
What can our kids endure? How old are they? What kind of time do we have where we’re at? So just like. What I, what Krystal and Tommie and I and Angie and mm-hmm. You want in this podcast is a place where all the moms can come for information and be seen and yet not like taken down a path. That’s the one right way.
Right. It’s not true. True. There’s no one, there’s no
Krystal Vivian: one right way. No, absolutely. So thank you for being willing to
Lindsey Forsyth: share this story For sure.
Krystal Vivian: Absolutely. Thank you so much. Uh, that is, it’s just incredible the different journeys and all the different pathways. There’s another part of your story that makes you really unique, Tricia, and that is that you’re also a teacher.
How has this exper and Panda’s families all the time talk about the struggles that they have with schools and teachers not getting it? You had a teacher who really helped with your son, um, but as a teacher, how has this journey shaped you as a teacher in dealing with kids, and what would you, what kind of advice would you give for parents to who need help working with their schools and their teachers?
Tricia: Um, I think that it has given me a lot of, a lot more empathy maybe and a lot more. Um, you know, there’s the, I mean, I’ve been a teacher for 20 years in third grade, elementary and intermediate, and I, I think that there are those, um, it’s faces that kind of linger in your mind that you wonder like, if, maybe, maybe if we could, if I had known if I’d had this information, like maybe we could have.
You know, done something about it. Like maybe they, they could have had, uh, PANDAS or, um, that that was a fact, a part of their story. Mm-hmm. Um, I think that there is always a, um, a place though for, obviously I can’t diagnose kids. Mm-hmm. But I think that I can have, um, an impact as far as, um. Suggesting like, Hey, have you gone to the doctor for that?
Or, Hey. And I think as moms sometimes we actually need that more than I think, um, just because you, you question yourself. Right. And especially as they get older, you think that, oh, it’s just, um, I don’t know. I’m, I’m exaggerating. I don’t, what’s the word I’m thinking? I’m, um, over overreacting. Yeah. Like I’m overreacting and, um.
But there, I, I do think that, like, when I hear parents talk, especially, they’re great. If I would hear parents talk about, um, uh, specifically about behavior issues, that, that, that’s something that you can bring another, that I could bring another, um, another like viewpoint to,
Krystal Vivian: to wrap up. You know, your journey has been, has been very unique.
There’s some overlap with Lindsey’s, but also unique with the mold. Um, and the timeline of everything. Mm-hmm. What resources, if you were talking to another mom who is at the beginning of the journey, what resources would you recommend looking into? Um, what do you think would be really helpful for them?
Tricia: Yeah. Um, I think that the one I got the most, like the, the one that I got the most information from as far as mold goes, was change the Air Foundation, um, just because there was so much. Uh, research based information there. And it wasn’t just blog stories, even though I, I, I think those are also helpful to read.
Um, it was a lot of research based, so, um, and I, I think what it, it came back to for me too was just because like other people might not recognize it as a big deal or just because it’s not mainstream or just because doctors might not bring it up. Does not necessarily mean it’s not a thing. Um, and it doesn’t mean it’s not a big thing, like a big part of your journey.
Lindsey Forsyth: Um, which we can also relate to as panda’s parents because that sounds a lot like what PANDAS looked like even 10 years ago. Mm-hmm.
Tricia: A hundred percent. Yeah. Um, and so having, um, so that, that site was the biggest, having a doctor too that is willing to do, um. More holistic, um, looking at your child I think is such a big deal.
Um, and so my, uh, we work with a concierge doctor who will look at everything from nutrition to testing levels, to uh, you know, looking at thyroid issues, to looking at, um, you know, flares, PANDAS flares. So I think that. Resource is invaluable, honestly, and she trusts the parent. So yes, a hundred percent she will.
What I love the most is that she won’t say, like, I never get the vibe that she knows it all. Like that’s my big warning flag of doctors. I don’t care what type of a doctor at this point is. If you feel like you have, um, reached your peak of understanding in the field. I feel like that’s such a red flag because there’s so much more out there and it’s so interconnected.
Mm-hmm. So I love how she, um, Dr. Adame really, um, she brings it all together and she trusts and she listens and mm-hmm. That’s a big, huge resource. I don’t know if I can go in the notes, but Yeah, absolutely. That is a, that’s probably our biggest one, to be honest. Okay. Um, and then also my, so as far as testing, we used my Myco Labs, which was a, um, blood test.
Um. Some that say blood tests are, you know, there’s some controversy between blood or urine tests for mycotoxins in your kids or in yourself. Um, but we chose to go the blood route. And so, um, that was through Dr. Andrew Campbell. Um, it was some of his research. So, and again, it’s all, there’s controversial, you know, back and forth.
He does not believe in binders necessarily. And we do take some binders, so we’re kind of picking and choosing. You’re figuring out what
Krystal Vivian: works for you. Yeah, I think that’s such key to this. Like no matter where you are on the PANDAS journey and what you’re doing, you almost have to pick and choose and trust your gut and do what feels right and, and trust yourself as the parent.
And maybe you choose something and you’re like, oh, that didn’t work. We’re gonna try something else. And that’s okay. Um, you know, doctors call it a practice for a reason, right. I think in parenting we’re practicing too, and. It’s all about just figuring out what works for you.
Lindsey Forsyth: Well, I think it’s apparent too if anything is going to make you throw to the wind what you think about what other people think about you.
I mean, yeah, this disease will do it. It’s all that should sail day long time ago.
Krystal Vivian: Yeah, it really did. 100%. Well, Tricia, thank you so much. This has been really educational for me and really eyeopening. I think a lot of our listeners are gonna really appreciate hearing. Your stories. Thank you for taking the time today to chat with us.
Uh, we like to end each episode of flying through Fog with a story of hope to let our listeners know that if they’re flying through the fog and it’s really foggy right now, the sun is gonna shine one day and, and there is hope on the horizon. Um, the fog is just keeping you from seeing it right now. So do you have a story of hope to share with our listeners?
Tricia: I think the biggest thing that would’ve helped me, um, is recognizing, I like to see through realistic lenses too. So recognizing that it is a marathon, not a sprint is a big deal, but like little steps matter. So sometimes it just felt like there were too many things. Um, and I think recognizing that like.
Taking a little step every single day. Got me a little bit closer, um, to where we are. So it’s not perfect now, um, but we’re a heck of a lot farther now than where we were before. Um, the ticks are down, the accidents are gone. Um, there’s more positive conversations around it, even in self-reflection for my kids, which is a big deal.
Um, and so we’re closer now than where we were before.
Lindsey Forsyth: Who would’ve ever thought when your little guy was five and you started on this journey, what the ripple of this recording will be for other people? Because you went through that, like, I hope that you understand how important you sharing your journey and not just on this podcast, but mm-hmm.
Trisha, I, I’ve told parents who need to learn more about different facets than I’ve gone down to Talk to Tricia. You’re a bulldog. I mean, you just don’t, you don’t stop. Like when they say a mom will run through brick walls for her kids. Mm-hmm. This is like personified right here next to me. I just, it doesn’t just help your kids, so thank you.
It helps all of our kids and it helps the people whose kids have yet to even develop these symptoms. Yeah. Truly
Tricia: appreciate that. Wouldn’t have done it without a bunch of other moms. That helped us as well, including you. Thank you. It’s a big deal. Yeah. I like to talk. It takes a village closer circle.
Krystal Vivian: Well, that’s a good thing.
That’s We need to talk. We need to talk. That’s, it’s so important to share stories and to talk about this and talk about the hard things, and talk about the things that make us cry or make us feel scared because. Yeah. Even though our journeys are all unique, there’s a lot of overlap and those feelings of fear and shame and oh my gosh, is this ever gonna get better?
Mm-hmm. Uh, those are universal. Mm-hmm. No matter what we’re going through. So I think it’s important. Uh, thank you. Thank you so much for sharing, for sharing the story.
Listeners, we’re looking for more stories of hope to share. At the end of each episode, if you, it could be a fun anecdote, a short story about something your family experienced that you did pre-diagnosis. You can record a voice memo that’s 60 seconds or shorter, or write out your story for us to read and email it to PANDAS@federatedmedia.com.
We may choose it and read it on a future episode. Thank you Tricia, again for joining us today. As always, thank you, Lindsey, for joining us today. Thank you and everything that you do, just always, and thank you to our listeners for spending your time with us today. If you found this episode valuable, please leave us a rating and a review on your favorite podcast app.
It’s the best way to help other families get access to this information. Well, second best ’cause the number one is you could share this podcast directly with somebody if you think that it would be helpful for them. Family members, friends, anybody. Flying through Fog is edited and produced by the incomparable Tommie Lee.
Special thank you to Legacy Heating and Air for your support of PANDAS Michiana and this podcast. I’m Krystal Vivian. We’ll be back with more interviews and conversations on the next episode of Flying Through Fog.
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:
