When Strep Becomes PANDAS & is Also PANS: How Emmy Got Her Life Back

Today we are discussing Emmy's case, where a sudden shift in her behaviour raised concerns linked to PANS and PANDAS—conditions triggered by infections. Her parents noticed drastic mood changes and patterns of anxiety and obsessive behavior, with temporary relief from treatment followed by a return of symptoms. As they navigated different medical options, her condition remained challenging, highlighting the complexity of these disorders. Listen to learn about their experience with Hey Hey Mae, and to see how Emmy is doing today!

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Transcript

SPEAKER_01 0:02

Hey, you're gonna be okay. I'm your host, Elizabeth May, and my functional health practice helps people heal when they've exhausted traditional options. When no one can figure your health challenges out, my team helps you resolve symptoms and restores your health. You're listening to my podcast where we'll hear stories of healing chronic illness from a root cause approach. So we've covered a case lightly where strep and lime interacted for a kid's behavior, and we kind of got a little glance into what pandas can look like. But now we're going to go digging deeper with Amy's case. And I first just kind of want to give a little background info on what are what is pans, what is pandas. It's kind of a relatively new diagnosis, even to traditional medicine. And just breaking it down, pandas is pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. PANS, I would consider very, very similar as far as like day-to-day presentation in Nikido, but it's pediatric acute onset neuropsychiatric symptom. So I kind of want to talk through with you guys. Um, both of Emmy's parents, Courtney and James, are here. And I think it's really important to kind of like lay the background that strep was kind of recurring for you guys. It was going on, but you were already in this world. Like functional medicine wasn't entirely new to you guys. James is a chiropractor. So definitely you guys are like equipped to see things in a different perspective and also just see a ton of people and a ton of children. So this sort of behavior change was definitely maybe something that, you know, one, it's not the norm, but two, you were more equipped to see, I think, quicker than other families maybe could. So kind of when we started talking last fall, we had a clarity call um before her tonsils and stuff came out. Where was she at that point when we started talking?

SPEAKER_00 1:52

So when we started, it was we we noticed a drastic behavior change overnight. Um, and we actually did go the antibiotic route at first, and it completely switched her back to normal, where she wasn't raging at us, she wasn't aggressive with any of us. And when she I I would say when she first started, it was more like over the top tantrums, but she was four turning five. So it was she was coming to a point where like the tantrums should have eventually stopped or not been so long, and we just noticed it wasn't changing when all of her friends seem to kind of be getting out of the tantrum phase. Um, so that's where we started.

SPEAKER_02 2:34

And even with the so we did the antibiotics and we saw improvement, but it was literally like you flip a light switch, so like we have a sweet, happy, go lucky Emmy, and then you walk over the wall, you flip the light switch, and then you get rage, irritability, anxiety, like crying at school, and like a drastic switch. But then we would start the antibiotic or see a week of good, and then all of a sudden it'd be like flipping the light switch on again. So I don't think it was like it was fairly like just cut and dry, drastic.

SPEAKER_00 3:10

And it did get to a point where nothing was helping after that, though. It was just like the antibiotics worked the first time and then never again not brought her back to home.

SPEAKER_01 3:20

Yeah, I think when we started, you guys like it. The other thing was she was one of many people in the house. Like, you all have more children, uh you had Courtney had had strep, um had it together, and then it was kind of making its runs a little bit. But Emmy was the one who mood-wise everything was very, very different for her. And she was the one who had those rage fits and had um just like a big that on and off switch, things were very different, and then things are very fine. Um, and so I know tonsils were kind of one of the big issues, and that was something that we briefly talked about, I think, on our clarity call. And as you guys worked through the antibiotic routine and things like that, I think a recommendation was eventually made. So, like, what was what was kind of the care you were experiencing at that phase where you were before we started working together?

SPEAKER_02 4:06

We had so Emmy got strep throat, she was sick for a couple days, a couple days, got out of it. Um, and then we were eating dinner, and Emmy's like, Oh, dad, it's like hard to swallow. And I was like, really? And so I told her to open her mouth, and her tonsils were like almost touching. Um, so we had worked with a nurse practitioner several times. It's you know fairly crunchy, fairly functional medicine oriented. Um, I called her, I think it was like a Saturday or something, and we I went to her house, we got antibiotics uh because the tonsils were so close. The problem we ran into, and the reason we took the tonsils off is we couldn't get the tonsils swelling to ever recede. Like it was they were always swollen for like months on end.

SPEAKER_00 4:55

But other than that, that was our nurse practitioner knew of pandas, and her and I were chatting about the risk of what would happen if we left the strap untreated. Because I mean being as crunchy as we are, we treated it with like the traditional um apple cider vinegar and garlic and manuka honey and all of the things. Um and then after the care with our nurse, she recommended a specialist, and that was it. And we reached out to the specialist twice. I left voicemails twice, no callback. And luckily, through a friend, we were referred to you. And that's we really had nowhere to go. We were kind of lost.

SPEAKER_01 5:35

Yeah, and at that point, she had like, I feel like behavioral things were difficult and they kept kind of building. Like she went through a phase where she didn't want to wear any socks with her shoes. She was starting to need things a certain way. There was a little bit of a hand washing phase where she needed to wash, but some of the pandas kids I see are washing their hands 50 to 75 times a day. She wasn't quite there, and there was still that like a little bit normal, a lot of bit weird back and forth light switch kind of thing. And you guys had pulled before you came to me, you looked at strep antibodies, they were high, they weren't insane, but they were definitely high. And those tonsils came out. So when we started working together in January, the rage piece, I think, really started to come into play more. Um, and I think too, the more I see children with pansas, pandas or pans, or even adults, because I don't find that it sticks to the pediatric population, it can occur completely the same in adult. Um, what you're usually going to get is questions about mental health diagnosis, right? It's a kid, all of a sudden we have these onset changes. So, what were kind of things at that phase that were going on in your house within me that could have maybe led that direction?

SPEAKER_02 6:52

Definitely like the OCD type symptoms, like OCD was actually what got really bad in December.

SPEAKER_00 7:00

We took a trip to Mexico and she is like our happy care pre-traveler, and that's when OCD went like wild.

SPEAKER_02 7:07

She I touched this to am I okay to eat this? Am I like just all kinds of just anything wet?

SPEAKER_00 7:13

If we walked by a mud puddle, she would be like, Why is the concrete wet? Why is that bench wet? A little girl splashed me with water, is that okay? And everything. I guess the OCD presenting as her questions with questions, Am I okay? Like, I touch this, am I okay? And that's when I actually started Googling, why is my child asking for reassurance on everything that she does? And that's when it came up in Google. Another marker for pandas was constant reassurance, and that was a form of OCD, and I didn't realize that. Um, so that got really bad in the house.

SPEAKER_02 7:48

We also had like if you went to bed, if you didn't give her two kisses, it was like a huge hour-long fit. Or if you gave her three kisses instead of two kisses, we'd have like an hour-long freak out just turn the light switch off instead of me, or if he tried to cover her.

SPEAKER_00 8:05

Sometimes if he even came into the bedroom, she would be like, get out of my room to him. Like she didn't want him anywhere near her. Yeah.

SPEAKER_01 8:15

And it would be so easy for these things to be categorized as a ton of other stuff, but I see it recurrent, consistent with pandas and pants. There's always a preferential parent typically, or a preferential, sometimes a sibling, that that's like their safe person. And then there will often be a person in the house that is their uh enemy where they don't want to be around that person. And if you learn about strep and strep carriers, which I go back and forth on whether or not that's a thing because strep is so rampant and we're just seeing such big issues globally since the pandemic. But a lot of times the child can purposefully avoid a strep carrier, or they can kind of mark someone that way. And a lot of the OCD inhabits, hers didn't entirely, but they go back to cleanliness. So sometimes it's for her, it was like the dog touching her, some a fork touching something, the cleanliness food things, the food thing is something I see all the time. We got four-year-olds reading expiration dates in the refrigerator obsessively, like that's not normal, and it does pop up out of nowhere sometimes, and it can be related. And what's going on is that strep infection is typically crossed over through the blood-brain barrier into the brain, and we have a lot of inflammation going on, and the immune system can wrongly start um attacking the brain and creating all sorts of oddities kind of in the mental health varieties. I think too, some of her things like you could write off as preference things. Like, you're right, like she was four or five, you're kind of moving into like being a little bit more your own lady, like I want to sit there, I want to do this, having choice. But it was like she didn't want to sit on the wrong side of the plane. And that had that was like a whole issue, right? She had to be carried off. I do think, too, the bedtime stuff is so important because separation anxiety shows up in lots of places. The bedtimes when we started talking too, let's talk about the length of what was going on there. And like, could you put her to bed and then walk out? Was that an option? And if not, what happened?

SPEAKER_00 10:15

Um, so bedtime when we initially started was a two to three hour process. And I think so, we started here with you in January, and she was in school at this time. So she would literally lay in bed. Well, she'd scream for an hour before even getting in bed sometimes. And then we'd get her in bed and she would lay there and just think of things that she maybe did wrong. Like she dropped a piece of food in the cafeteria and she could not let the go let go of the fact that somebody stepped on it and it was her fault. And so she'd recite her whole entire day of things that she maybe slipped up and did something wrong. Um, sometimes she was physically attacking me or whoever was putting her to bed at that point.

SPEAKER_01 11:04

Um yeah, the aggression stuff really can build and become very quickly sometimes dangerous, which sounds kind of wild because she's a small person. She really is a little girl. But also, I mean, I see all the time little teeny tiny children and little boys, like they can be it's a it's a very unique, like the light switch is really the best explanation. And you could excuse it away or explain it away, or you could even diagnose it away. Um, you know, certainly the light switch thing could match with bipolar disorder or portions of that, but that's absolutely not what's going on. And so, one, this feels overwhelming maybe at this point, but two, we're gonna get to where she is now. But I think when we did our intake two, you know, you guys were like very clear like this is definitely painless. We've had the strep, we know what's up. And as we started pulling symptoms out, um, I kind of pushed in on some more things. She would complain of leg pain sometimes and she would be tired. We talked about how she was an active little girl, but she could run, but not very well and not for long periods of time. Um, I know that we you guys eventually pulled her from school because this stuff just like it was too much. So, what really were like things that kind of led to that shift? And did pulling her from school change things for Amy?

SPEAKER_02 12:21

We probably initially pulled her from school because it was just like so traumatic for her, like anxiety-wise, because that was a huge thing, like crying, holding on to you while you're trying to drop her off at school, and then it would almost be like she would hold together fairly well through school. So everybody would think, you know, we're crazy. Because I mean it's great, she does all her stuff, and then by the time you would get her into the car after school, it would just be like, oh my gosh, Lexi looked at her the wrong way, and it would be like scream the entire drive through.

SPEAKER_00 12:54

She would attack her sister, hit her sister, or sometimes. Um, and then just for her nervous system in general to be sitting there worrying all day if she touched something wrong. We just felt it wasn't fair for her little body to be suffering all day. Um, and not getting not saying the teacher wasn't necessarily loving, but she couldn't get the constant reassurance from me every two minutes that she actually needed.

SPEAKER_01 13:17

Yeah. Yeah.

SPEAKER_00 13:18

And for us, I felt like the timeline was absolutely perfect. I mean, I think we started, um, really started care what March, April, and then she had the whole summer to kind of heal and get back to where she needed to be this year.

SPEAKER_01 13:32

Yeah, we started addressing like strep right off the bat, and I you guys were super game to do a full panel to see what kind of infections were there. She was also complaining of like shapes that her eyes could see sometimes. And of course, when we're working with little people, sometimes they have like trademark ways of explaining things, but floaters are pretty common with Lyme and Co. infections and um where you guys live geographically, like northern Indiana, southern Michigan, you guys do a lot of traveling and camping. Those were kind of clues for me. And she was also just hyper-flexible. And we kind of talked too through, you know, like James, you're a chiropractor. So you would adjust her, she would do red light, things would be really good for a little bit, and then she would really lose it several hours later. So for me, those were kind of signs that like these things are prompting a clearing response, and we're seeing those behaviors come up hours after. And when we got her test back, we did. There's lime there. There was Bartonella, which I find that Bartonella, when there's rage attached to pandas, is almost more of a driver. When there's OCD, Bartonella is almost more of a driver. And Bartonella, there are 40 different species in America carried by cats and fleas and little bug, little bugs and ticks and all sorts of things. Um, so it's something that we can all be exposed to, but the best testing only looks at four varieties. So sometimes we really have to roll off of symptoms. But she had other, like a cascade basically, of infections that were there, a couple more tick-borne, the strep A, of course. Um, but I remember we started strep first and we're working through that. How do you guys recall even the difference between when we started the strep piece and then when we layered in working at the Lyme and co-infections portion?

SPEAKER_00 15:13

I feel like we made great progress initially. And we noticed a lot of the OCD um went away. And then the rage piece kind of came and took place of the OCD, and we got more and more rage. And I think that's when you suggested the Lyme at that point um is taking the symptoms are taking over. Um so that way we needed to get the other treatment started. But I she'd made great progress initially.

SPEAKER_02 15:40

Yeah, for the first probably like three weeks, four weeks, we were like very excited, very happy. She was doing really well. And then all of a sudden it seemed like yeah, the co-infections started taking over for the strep, and then we had lots of rage symptoms, aggression. I think at that point is where it was like, I couldn't even be in the room with Emmy for bedtime. Like, don't try to brush the teeth, nothing else like that. And so then I think it was after that we were starting the other treatments that seemed to kind of push it over to the next level.

SPEAKER_01 16:14

Yeah, yeah. The OCD peeling back there in the beginning was definitely it can it can show up with the pain, so all sorts of infections, but strep really is one driver of that, and it can manifest. Like we kind of joke culturally about OCD. Um, I'm really OCD about cleaning, I'm OCD about this, but like when a child has impulses, compulsions, is obsessed, the cleanliness thing. I've had a client who had major religious obsessions that like right, wrong, do it okay, not okay, like that kind of stuff when it sets in that really the set-in too, that it was more acute because she had not had she had any of these symptoms prior to y'all kind of trading strep in the family.

SPEAKER_02 17:03

I'll tell you the worst symptom that used to make me just absolutely crazy was she would tick in the back of her throat, like consistently trying to go to bed, doing anything, and it was just like the ticking. It'd be like just a clicking glass.

SPEAKER_00 17:20

But and I think it's important OCD didn't just present as like because when we first started, he's like, She is not OCD, she'd be flipping the light switch up and down a million times if she was OCD because it had to be done the right way. But it was like simple things like she didn't like the way her socks fall with her shoes, or she wanted her sleeves rolled, but then it was just like the constant literally every two minutes she'd be asking us if she was okay.

SPEAKER_01 17:41

And you wouldn't think that was OCD traditionally, but yeah, the sensory preferences are huge, they're like they show up in lots of different ways, and sometimes we mark progress by when kids are able to keep their clothes on, which sounds a little bit insane. But for a kid who hasn't and then you know doesn't want to wear certain things, and then they're able to flex with whatever's purchased for them, like that can be more than just extreme preferences. There can be more. And I think once we started addressing the whole group of infections and really started teaching Emmy's immune system, because she is under seven, so her immune system was still developing and figuring out what is Emmy's body and what's pathogen and bacteria and viruses coming at her, a lot of herself kind of started to surface. So once things started to get better, was that like a oh, we're all clear now, or was it kind of an ebb and flow? What was it like to start seeing progress?

SPEAKER_02 18:39

It was definitely ebb and flow.

SPEAKER_00 18:41

Yeah, I would it would be your classic like roller coaster description because I know I would have to text or message you guys sometimes for just like to keep me on the roller coaster and keep me from jumping off because it was we'd be good and then we'd you know it seemed to be like when we it was time to take a vial of something, those types of things would be they'd pop back up.

SPEAKER_02 19:05

Yeah, they'd show back up, and then she would take the vial, and then we'd have like one bad day, and then the day after that she would be really, really good for a couple days, and it's like time for another vial, and things would start up again. So it was kind of yeah, definitely ebbs and flows.

SPEAKER_01 19:20

Yeah, yeah. And I think that part of pandas before you even start addressing it is the absolute worst part because you never know what's going to happen. You don't know if you're about to fly with a kid who's losing their marbles for two hours, or if you're gonna fly with a little saint child who's funny and witty and happy and content. Um, I think one of the things that I find really important to communicate anytime that I have an audience is what does it look like to have pandas in your home? Not just for the child who's dealing with it and inconvenience and scary and all the things, but what effect does it did it have on siblings or on your family life? Or like I know you talked about pieces of those, but maybe parts that were hard or ways you guys had to modify, or things that you kind of grieve at this point now that we're kind of more in the clear. What's come up around that?

SPEAKER_00 20:12

I think the best word to describe it is chaotic. It's our household felt very chaotic. And I think we joked, or he joked one day that maybe it'd be best if we just slid up and I could ever have the time and you could. And we were obviously nowhere near serious when he said that, but it was just like it did seem easier at some point just to be away from her. Um, she would attack her little sister, was her little sister and him were like the primary people she would attack. Um, we'd get into a car after school and she'd take it out on her sister, or there was points where Lexi wouldn't even be alone in the same room with her because she was literally terrified to be there.

SPEAKER_01 20:52

Yeah.

unknown 20:53

Yeah.

SPEAKER_02 20:54

And it would be even be like, you know, a simple trip to the grocery store where we used to all say go to Costco together. We couldn't go to Costco together because if Emmy sat in the wrong seat in the cart, it would be like a huge scene, or you know, we quit going a lot of places just because you you'd be good one second, and then you'd have an hour of people thinking you're abusing your kid because she's screaming, trying to drag her out of the store, or you know, those types of things.

SPEAKER_00 21:21

It was it was chaotic and messy. And I remember looking at each other thinking, well, maybe it's because we have three kids now and it's just it's chaos. But we I just remember being like, what happened to our life? We were never this stressed out having kids, we were never short-tempered at having kids, but it just it really affected the peace in our house.

SPEAKER_01 21:41

Yeah, yeah. I think that that before and after thing is key because she wasn't always that way, and that wasn't always the tone of things, and the impact it has on everyone else's nervous systems, too. To do a three hour bedtime, I just think about my normal life and putting my voice together and a End of the day as a parent, you're like sometimes very done, and you're happy to read a book and then close the door, and you're like, We will see each other tomorrow. And to have to face that, I know like the dread of the bedtime piece was one of the big pieces for you guys, just functionally, but it really does, it takes over every part of your life, and it's happening all the time. And the children are usually small, typically onsets around age three to four, up to age 10. And so you're not really away from that age of child a whole lot. And I've had kids who've had to be pulled from school, had to be pulled from daycare, don't want to go to normal care providers like grandparents or family that they always go to. Nothing's been bad, they've always loved it. And there's a very prompt change.

SPEAKER_00 22:44

Yeah, she did that with my mom, who she was with all the time since she was born. She quit staying the night at her house. She quit even going there without us. If I was gonna leave, she was not gonna stay there.

SPEAKER_02 22:56

And I think another big thing that is like the guilt of like you if you have a kid that is constantly screaming, crying, hitting, like you can keep your patience for so long, and then at some point one of us would just kind of freak out and yell, and we typically didn't yell and those types of things, and so then you know you'd have to be feel guilty for two hours because you yelled at her and you somewhat understand it's not her fault, but after 10-12 hours of hearing her meltdowns and freakouts and like making sure you touch everything's the perfect way, you can only like handle it before you know somebody explodes and then you feel guilty. So I think that was a huge part of it too.

SPEAKER_00 23:39

And I think I remember messaging you being like, now that we don't have many symptoms, or when something did pop up, I'm like, how did we ever make it through? How do we live like this? Because it was 24-7 and not just a random day here or there.

SPEAKER_01 23:54

It's a very bizarre existence. And it reminded me of one time we were talking, and you were just sharing about like she wants to control everyone around her, and we can't keep living like this, but also I feel bad because she's sick and we know now what she's sick and what's going on, but also I literally cannot be bossed around for two hours at bedtime. And just like conversations that we had, which I think support for pandas and pans parents is not there yet at all. The conversations and the spaces that you can go into are as good as a Facebook chat room because it's relatively new and that can be so scary because pandas can cause such regression, and it can be there, just can be so many factors that can can intersect with it for different kids. So it shows up lots of different ways in lots of different families. I've had kids fully lose language and skills, and other kids who just lose their cool all the time and can't handle things. But I think we talked a bit too about, and I tell clients that like your child is sick right now. That doesn't mean that they get to continue the behaviors that they're continuing. And we like she's big enough. We give her language around, like, hey, you're sick right now. But when Daddy's sick and he has a flu, he doesn't get to be mean in rage and like kind of trying to do very bizarre juxtaposition. Because on one hand, you're like, well, she feels this way because she's sick. Let's not be unkind to her and ask her to do things she can't do, but also for the sake of family environment and also for who Emmy will grow up to be. She'll be sick again sometime, hopefully not ever with this, but with like the flu or something where she feels yucky and learning to navigate with a conscience, how to like teach your child to regulate emotions when they can't, but you need that. It's such a tangle, and it's really I think it's probably the most traumatic thing that I see really for families when they get done because the kids remember the episode I share with Britney and Levi, he talks about going to the ice cream place where he had to be carried out and was like shaking and old and like shameful around it. And it's a little bit new to say that, like, hey, behavior is connected to um infections, but we do that with old people. They get a little off behaviorally, and you're like, hmm, could they have a UTI? Might there be an infection? And sure enough, that's something we completely accept. But now we're seeing it in children in our country, so things are different. Um, but I really appreciate you guys sharing like the fullness of what happened because I see it every day. It's very bizarre. It's really bizarre because we didn't grow up with this. Like, this truly is something that's newer. There's not um much exposure to that. But during that time and even now, how I guess let's just talk about that. Where's Emmy now? How's she doing now? We're getting close to the end of addressing infections. And what is what is bedtime? Everything like now.

SPEAKER_00 26:53

She is happy, she's competent, she's not anxious.

SPEAKER_02 26:57

She's funny again.

SPEAKER_00 26:58

She's funny, but like Emmy when she was two had the best sense of humor, like just funny. And I remember her cousin, even not too long ago, was like, I miss when Emmy wasn't sick and she was funny, but they're bonding again. Um, everyone is everyone's happy. Yeah, she was.

SPEAKER_02 27:18

Her little brother is like obsessed with her. He comes out, gets hugs every morning. Where before it's like you didn't even let him around her because you didn't know if she'd freak out. So yeah.

SPEAKER_00 27:29

Um, bedtimes take probably anywhere from 10 to 20 minutes, and now after now that she's back in school, she's actually sharing like the good things that happened in the day, and she's not worried about anything she did wrong.

SPEAKER_02 27:44

Um she she never cried getting dropped off at school for the last three weeks, which was you know, like two months of her last time was like tears for 20-30 minutes before we got her into school.

SPEAKER_00 27:57

And so she right to school, she's happy when we pick her up, and that was for me, um, because he's at work a lot, and I would be the one to pick him up with my two other kids. So now when she gets into the car, I'm like holding my breath, wondering what version of her I'm gonna get. But every day it just seems like a better version, and it's it's so great to see it's so fun because like her face is clear. When she was sick, her eyes were huge, her smile was off. It was just not her, and now she she's doing really well.

SPEAKER_01 28:33

I think that's a really good point. We didn't talk about that. There are some physical signs where the pupils will get really dilated, and that sounds like not a big deal, but when you looked at your kid every day for years, like it's very bizarre. There's a very different presence. Um, a lot of these kids have, and I get to see them sometimes in the beginning, not often till the end, when they show up on a call randomly, they creep in. And it's really wild to see how like clear and present. Yeah, just like there they are. And I know that that wasn't the case when things started, but um I really appreciate you guys sharing. I would love if you can maybe think back through the process and share, because so many people are not familiar with this, or even are blessed to not be familiar with chronic illness. What is something that someone did to care for you all, for Emmy, for your family, um, through this time working through pans and pinas with her?

SPEAKER_00 29:28

I think my mom was probably this one of she would take her whenever we asked and whenever we needed, even if it was like, hey, go to the grocery store and I'll just come over and be with her because she was one of the only ones we could leave her with. Um she wouldn't really stay with his mom anymore. Um but I really think other than my mom, nobody really understood. So it was like we didn't really have any other support.

SPEAKER_02 29:57

Yeah, yeah, probably just uh it just the problem was was Emmy did so well like in public where she could like a lot of times to keep it together for two or three hours, and then it's like when she felt safe again was when she would like freak out. Um so it took a really long time for people to understand like what we constantly dealt with, and so then what I think the biggest thing as a parent that you can get during that scenario is maybe take the other kids at one point and go do something fun so you can enjoy yourself and be happy, normal. I mean, then we would take Emmy by herself to do things to be happy and normal as we could because we could cater to her more. Um, but I I think being able to get a break from the constant chaos is the biggest thing you can do um for your sanity.

SPEAKER_01 30:53

Yeah, I think it's not obviously discussed enough, but how it impacts everyone else's nervous systems trying to just like co-regulate when stuff is in your presence that's that you know dysfunctional. And it's I always say it's kind of like you're getting gaslit by your own kid because they were fine and then they're not, and then you're also playing the like, is this real game? Which is real fascinating thing to do. No, it's very bizarre, but that's really helpful. And I think taking breaks is huge and scary because she really needed support and she had preferences on support, and it's one of those weird guilt places again where you're like, do we take care of her house she's requiring at the cost of everyone else, or how do we move forward through this? So I appreciate that insight a lot. But um, anything else you guys want to share before we hop off? I really appreciate you being open with such a bizarre, but not bizarre, because there are so many children in America who have pandas and pans undiagnosed. And I just saw our pediatrician two weeks ago and she said, I think this is the thing that I see the most of that I have a hard time getting people to understand um because it is so new and rampant.

SPEAKER_02 32:08

So I think the biggest thing is if you are like have any inclination that your kid is suffering from it, I think you have to fight really, really hard to get somebody to actually give the diagnosis for it. And so I mean, really, you almost have to use a third-party lab to even get testing or like those types of things. So I don't think if you have a thought that your kid has penis, uh the worst strategy is to go to your pediatrician if they're not versed in it and try to get a diagnosis, because I think that's where you end up with like, oh, it's just the tonsils, or it's you know, bipolar, or like they have ADD. And so I think that's the biggest thing. If you have an inclination that the kid has pandas or limes, I think you have to like reach out.

SPEAKER_00 33:02

Like their tantrums don't seem normal, or you know, why are they all of a sudden aggressive with me? But I remember for us before we got started, he was a little bit like this lady's on Instagram. Um, we don't know her, and she's not local to us. But just find other ways of care. And for you, it was truly life-changing for us because we were at a point we were so hopeless and so lost on where to go. And I remember one night after a two-hour bedtime, I walked straight into the shower and didn't even say a word to him. And I was like, if God could just leave me somewhere, I will go. And I literally like was like, I'm gonna email Elizabeth and get started. And I walked out from the shower and was like, I'm paying in full and we're getting started. And we have never looked back. It has just been incredible to see the shift in her personality and where she is now that we would not have gotten anywhere else.

SPEAKER_01 34:01

I'm so glad y'all took the leap. It is hard really to find a provider who can help or who will take it seriously. And I think a key too is finding someone who's had success with addressing chronic infections and strep. And I know you guys had a friend connection, so you had a little vote of confidence, but I think even that friend wasn't very far along at the beginning of care. So it really was like taking a wild magnanimous issue and trusting essentially strength here, um, yeah, with that care. But I do appreciate I'm really glad.

SPEAKER_00 34:33

Obviously, we're all glad because he is back, and it's and it didn't come with nasty side effects, it was still her body, the power of her own body um healing her.

SPEAKER_01 34:44

Yeah, that's such a good word because it really is adjusting her body back to what it should have been able to do before the infection kind of really hijacked her immune system, which for her, in my opinion, the Lyme was probably there dormant before the strep came. And it had hijacked her immune system to where it couldn't really respond to a normal infection that a lot of kids get um with any sort of you know sticking recovery. And if we hadn't figured out that piece in the Bartonella, you would have kind of done the same roller coaster. So if any message I have around pandas is it's usually not just strep, there's usually more, and it's not usually just pandas or pandas. And I always say when parents are like, which one is it? I'm like, one, I don't treat or diagnose. Two, I don't care because we're gonna get better. It doesn't really matter what it is, but these infections are there and they have to go. We have to teach that immune system. So um appreciate you guys sharing and hopefully this will help some other families kind of discern what's going on in their own households because it really can be so isolating.

SPEAKER_00 35:44

Yeah, thank you for having us.

SPEAKER_01 35:47

I hope you're leaving encouraged, curious, and hopeful. If you learned something, I'd love for you to share this episode with a friend. Hey, we're all healing together. You can learn more about my practice, our team, and what it's like to work with us at heyhey may.com. I teach lots on Instagram and answer questions each Monday. My Instagram handle is at Hey Hey Elizabeth May. And my cookbook, Hey Hey Everyday, is available on heyheymei.com and Amazon. Happy healing.