I Went to College, and My Apartment Made Me Sick: Rylee’s Story of Recovery from Mold Illness

Podcast Introduction and Guest Welcome 0:00

Your genes hold the answers to your family's overall health. I'm Dr. Paula Kruppstadt and on the Get to the Root with Hope for Healing podcast, I sit down with experts in genetics, functional medicine, and family care to explore what's really going on beneath the surface so you can stop guessing and start healing. From personalized insights to practical tools, we bring you whole family wellness that starts at the root. Welcome to the Get to The Root podcast. I'm your host, Dr. Paula Kruppstadt, and joining me today is Riley Dean and her mom, Norma Dean.

They're both registered nurses and Riley went away to college and got really sick and she's gonna unpack her story. And I think that it would be encouraging and also kind of like an aha moment for any students going off to collage to be really careful about their environment. So welcome you guys. Thank you. Yeah. So Riley, you're a college graduate, a NICU nurse at a Premier Children's Hospital here in Houston. And Norma, You did the same for many years at another Premier children's hospital here at Houston, and that's how we met.

But Riley take us back when you went to college and you moved into an apartment and what started happening in your body. And then after you share some things, then I'm going to have your mom throw a couple of things into like her perspective. I think that's really important, you know, what you're going through and then what our family members observe on the outside. Okay, so tell us what happened. So I think as an 18 year old at the time, I noticed first thing how my energy was close to nothing.

I'd always struggled a little bit with energy, but this was like on a new level.I was super fatigued. And I was sleeping in until 11 a.m. noon, which was not like me at all. It was always an early bird. The main thing was I was having like panic attacks. I, was super anxious about everything that I normally wasn't anxious. Um, I. Was super active, always pretty good in school, straight A student. And I started failing tests in my best subjects and I even had to drop a class. So I also had some gut issues starting, like I would wake up in the middle of the night, would have this like really intense pain just all throughout my, my stomach and.

Those are like the main things that started to happen where I was like, okay, like something is not right. Okay. So basically you start your freshman year of college, you are profoundly fatigued, super duper tired. Had you ever had panic attacks in your life before? No. man. And then your failing tests, was it just really difficult to remember anything that you had learned and it was incredibly challenging? I think it went hand in hand with the panic attacks and anxiety because we were timed.

Riley's Sudden Health Decline in College 3:00

It was also in a building that I knew for a fact had water damage because it's widely talked about on campus. So I don't know if that had to do with it as well, but I would sit there and like, I wouldn't what to, do but my mind was now what I know to describe it. I was like on fire that like I just couldn't focus. Okay. And then all the gut problems. So Norma, as Riley's mom who'd watch her, you know, had seen her grow up, what are you thinking when this is going on? What are observing? Like what goes through your mind?

Well, I always back it up a little bit to, so she started college in September. She was like, she said active cheer, cheered for the college. So super involved. Like I said, good student. And then she came home in December and I, and we, you know, was a typical college student, like we didn't hear from her that much. she was having fun, whatever, or she. Busy. and then when she, about to go back in January, it was, didn t want to He was very, I don't want to say insecure, but like almost attached to me.

And I was like, what is your problem? Like you, you hardly called me, and so, now you don' want leave me almost like a toddler. I thought that was kind of strange, we encouraged her to go back and try to put some things in place for her energy. look at some things and, and so she did go back reluctantly. And then in March, we went on a cruise and she's my sun loving, you know, what loves to be by the pool kind of a girl. And she literally slept in the cabin almost all five days. I was like, something's wrong.

Something is wrong with her. Part of me was, is she experimenting with drugs? It was just so unlike her and unlike personality to just sleep all the time and not be involved in things that she loved to do. So that's when we got back from there is when, we reached out to you and Anna was like, maybe she just needs to reevaluate her, her supplements. And I don't, I had no idea. Yeah, yeah. Well, you know, it's interesting what you said about in December, January, she's getting ready to go back to school and it is almost like separation anxiety.

Like you didn't want to detach from your mom. So what said earlier, Riley, about brain on fire, This is part of the brain called the basal ganglia that controls these neurotransmitters. So basically you had pans. You had a brain that was on fire. Okay. Fast forward, you're thinking the big, the bad, ugly, could there be drugs involved? What has happened? Total personality change. to your happy, thriving Riley. Okay. So what happened in March? What did you do then? Well, I guess you reached out to me.

Yeah. End of March. And then Norma And Riley, I guess we'll start with you Riley. What's going through your mind when I bring up what I brought up and you can tell the listening audience what we talked about and then Norma, you could go, are you kidding me and unpack what you were thinking too. Yeah. So you mean like what was I thinking at the time? Well, when I brought up the idea of could there be mold and yeah, so let's go from there what we talked about when you came to see me and then we'll just take it from here and you're going to tell me how bad your apartment was.

I didn't question it at all. We had kind of already, you and I had a rapport from you when I saw you for a short time when i was a teenager. And so I was like, I knew I could, i trusted that you knew what you were talking about and that would looked into this. I also was just relieved that I maybe had an explanation for why I felt that way. Because I think that's really hard whenever you don't have an explaination and you're just kind feel crazy. So I think it was kind of validating to know that, oh, this is an environmental factor that could be making me feel like this and I'm not actually just going insane.

Yeah, those words validate. I mean, I, think that you articulated what so many people feel and or think when they when we're like, you know what, there's not a lot of things that cause all these things, and maybe it's this thing called biotoxin illness. So Norma, why don't you give your perspective too? Because you were like, what? At the time, I was still very much involved in the hospital system. We were kind of getting to be functional, crunchy families, but not completely immersed yet. And like I said, still working in the hospital system.

So I was like, a little bit of disbelief and a bit like how, just what, what are you talking about? Like, how can this be? So, I mean, obviously I knew you and trusted you. Like Riley said we had put our put her in your care already for other things and knew and trusted your thought processes and your heart and everything. So we just were like, well, how do we figure this out? And where do go from here? I mean, my bottom line from the get go was how did we get her better? I got to hear what we have to do, just, and my husband saying things like, how do we get our daughter back?

Riley, what year did you start college?

Family Concerns and Early Suspicions 9:00

2018. Okay. So in complete honesty, I had just learned about this entity the year before and I was beginning my own journey. I just was dipping my toes in the water, but it was like. Everyone who came to our practice with a lot of dysfunction involving multiple body systems, you know, You've got your gut, your immune system, neurologic system. You also started losing hair, didn't you? That was a couple years later. Okay. So we did an evaluation and from your perspective, what was your understanding of what we found out about you, Riley, after we do the labs and all the other stuff?

My understanding was that I had an abundance of toxins in my blood and my tissues that were causing my brain to be inflamed. And then that's why I was feeling the panic attacks and the anxiety. That to me was the, in the forefront of my mind was, the mental aspect. I know there was a lot of physical too, but that was to, me, I, was like, how can I get that on? So I think the things that stuck with me were like, okay, like my brain is inflamed and from these toxins, from me breathing it in. And that's why I feel this way.

And my, just to piggyback on that, you know, from my perspective, I was like, and what we already knew about Riley from her genetics was that she has difficulty detoxing anything like that biotoxins that. And so, we talked about the one in one and four and keep in mind, she also lived with three other girls. And we're like, why is she, so this is your perfect one at four scenario. Although one of the other girls was having some issues, but she was going home more frequently than Riley because like I said, she is cheering.

And anyway, this other girl was. Going home a lot more. So she does not in and as we'll unpack later, you'll see why hers was more pronounced. Yeah. So Riley, you had three roommates and one of the roommates had a dog. What was going on with the dog in this? Cause you were living off campus in an apartment and that's kind of like what else we're going to talk about. Cause not only did, like you knew about the building on campus that you talked about, but also where you are living. It was a big dog.

He was not a puppy. I'll make that clear. But he was having accidents throughout the house, peeing, pooping. he was like vomiting up his food. We also had a cat in the house and it was a townhouse. And that cat was also like pooping out blood, like just very random. Both of these pets had been with these girls prior, so, and they didn't have those problems before we moved in. But it kind of around the same time that I started to feel sick, second semester, the beginning of second-semester, that the animals also started joking signs.

And at first we thought, you know, maybe these animals are just, or the dog, especially maybe they weren't being taken out enough. But I don't, when the cat started having issues, we were like, I think. Yeah. So thanks for correcting me. It was a townhome, not an apartment. Like how many stories up were you? Just two. Just too. Okay. Didn't at one point the dogs have a seizure? No. It was just fecal and urinary incontinence and then puking up blood, both of them. That is freaky. Okay. So we get your labs back and your lab showed that you have what you alluded to, Norma, a one in four genetic predisposition.

We call it chronic inflammatory response syndrome. And at that point I asked you guys to test your townhome. Now I'm going to let you all expand about that. Yeah. Okay. So at this point, well, you had helped us with some resources of people to call and we called an independent mold inspector and they met us out there at the apartment. He said, y'all stay in the car or go to lunch or whatever. I am going do my thing. It was a couple of hours. I felt like he was very thorough. He was there for a long time.

And I remember thinking, when is he coming out? And don't ever let her back in that apartment again. There's enough mold in there to kill a horse. These are his words. You and your husband need to figure out how to get everything out of there. throw it all away. And he said, I cannot figure out where it is coming from, but I know that her room is full of mold and just by the, you know, the spore testing that he did and everything. He also looked in the HVAC system and in The Attic and found suspicious, stuff there.

And so we were like, that's when I felt the most overwhelmed. I was like what, where do we, what? Throw everything away? But we did what he said. We brought her home and then we commenced to talk to the complex about things, which they had, they did not believe us one bit, um, thought we were crazy and had multiple meetings with them. And, but we did what he said. We got N95 masks and went in there and got everything out, bagged it all up and threw pretty much everything in the dumpster.

Mold Discovery and Apartment Testing 15:00

A few things we brought home and learned how to clean. But yeah. Yeah. Now, I remember after Riley had moved out, what happened, was it the bathroom in your part of the, What happened? My bathroom, we all had our own bathrooms. Mine fell through to my roommates because I was on the second floor. Three of us from the 2nd floor, one was the bottom. The one with the dog? The dog was in the 1st floor underneath underneath my room and my bathroom fell through in her room but we didn't learn about that until the girl the other girls moved out so this was april that we found out what was going on for sure and then the others girls out moved in like june yeah like end of school end of school, maybe early June.

And one of the other moms, I knew her and she called me and said, and I was like, okay. She sent me pictures of that room underneath Riley's and it had her bathroom, everything coming through the ceiling into that. Obviously soaking wet and mold ridden. And we were like, okay, there it is. It was behind, behind her tub. You couldn't see it. And, and that is something that I always want to impress upon people is you can't. I mean, we cleaned her room. it wasn't a dump of an apartment. Yeah. You know, I'm so glad you brought that up.

Just yesterday, because we've started doing something called group SERS medical visits. Instead of saying the same thing to eight or nine people one-on-one in an hour-long appointment, it costs them more money. We do a group medical visit where we I explained because I like to teach I explain what chronic inflammatory response syndrome is and I show pictures and literally just yesterday some people said we don't see anything we dont smell anything and we do not think our son has Lyme disease but and i'm like you don´t know what you dont know please just humor me and test and We always ask people to do something called a dust collection first And then hire a mold inspector because a Mold Inspector will find mold.

There's mold everywhere, but the right kind, not the disease-causing kind. But I mean, literally, there was so much damage, Riley, that it rotted out the floor in your bathroom. And I'm sure, I mean, you're spending time in there every day, taking a shower, putting on your makeup if you felt good enough, and it's right next to your bedroom. You feel like crap and you are being bathed in all this stuff 24-7. So, for people who are listening, it takes about a month. to get some of these subspecialty labs back.

So let's fast forward to two things. And I know Norma, you always talk about this, but the two thing that make a big difference. We always talked about fish oil, then I'm going to let you expand on what pulled the toxins out of your body. Well, at first I was on a supplement called GI detox leaf. For me, I don't think that one was a good fit for me. But I ended up on the cholestyramine powder. I believe I started that the fall of my sophomore year. Had already been moved out for six months or so.

So I was in a new apartment that was to my clean. And I immediately noticed a difference. more of a sound mind. My family, my friends could all tell a difference in me. I was just a little bit more grounded. Just felt like I could think more clearly. And we could have tested our house immediately. Uh, I forgot to leave that out because we were like, well, gosh, like where else is this? And, we tested out house right away with the, uh, guess we did the Ermi or the Hertz. We might have done both. And it was acceptable.

I mean, we did do a little bit of further cleaning because who can't use that? But honestly, on a grand scale, it's good. Well, and I had lived in this house since I was 10 years old and never had an issue. So, you know, there's no coincidence that that's the first time I ever moved out of a house that my own dad built. Yeah. Yeah, I mean, we know that your dad, Andy, right, great building standards and good HVAC, good plumbing, you know, all that. So thank God for that, thank god for. And it was very distinct and you didn't smell anything weird in the town home, did you?

I don't think so. I honestly feel like if I did, it would have just been like, and then it was, had carpet, you know, in it. It was probably just, I probably wrote it off as like an older, mustier smell, of like carpet. But I mean, no idea that mold even had a smell. Yeah. And I didn't know anything about mold. Now you can walk into a place and be like. Something's not right. No, not staying here. Yeah. You're making a U-turn to get out. Okay. All right. So, and then Norma, you're watching Riley take colostiramine.

And again, I just want to reflect back. I didn't know what I did know. A lot of alternative binders like GI detox plus, they're great for binding up other things, but they may not be... published literature like there is with colostiramine and then the other one called Wellcall, which is colosevalam, to show the improvement in biomarkers and how it binds these things. But people along their journey, they can't necessarily take everything, so you want to throw something at them. It's like you said, it really didn't make a big difference.

Didn't move the needle. So it's all patient dependent, but also I'm just going to say, you know, the Shoemaker protocol really works. I mean, its published with numerous publications and improvement. You start the colostiamine and then, Norma, what are you noticing? What do you and Andy notice when Riley goes on CSM? Um, well, just to give validation to anybody that's listening and is doing cholesterol, I mean, we, and I, worked in your IV room for five years and it's like, could I listened to people talking about their journey and not to take the focus off O'Reilly, but I identified because they were like it so hard and you

Detox Treatment and Gradual Recovery 22:00

can't take it with food without, you know, away from food this time, that time. But you, i mean we were. Like I said in the beginning, I wanted my daughter to get better and we were going to do whatever it took. So we figured it out, made a schedule. She was of course a young adult, so was taking good responsibility with some guidance. And so definitely, i mean, ill just be honest during that first six months to a year, it was not It was not a fast turnaround. It. Was a long drawn out process because there were so many things to detox and unpack.

And then it just seems like she was everything she did made her feel. Now we know it was like herxing and just driving out the toxins. And so we were in constant pursuit of this balance of how do we get this stuff out of her body, yet keep her in a functional living day to day functionally and she did up taking some time off college. She took off a semester. So, uh, because it just was such a process to clean clean out. Yeah. Does that answer? Yeah. Yeah, I mean, you nailed it. It's like when your health is failing and you want to be better immediately, he didn't get there overnight.

But just the sheer burden of what you breathed in every day, what went through your skin, but hit the back of your throat and use swallowed to pull all that garbage out of you. The fact that you were even able to keep going to college kind of blows my mind. And then you, you made up for that Riley. I mean, she, I'm just going kind to brag on you. Don't know all the details, but this premier children's hospital here in Houston, You were chosen out of just a few, 400 and some applicants for how many positions?

Five or something? I think there was 12 of us. I mean, and you got picked. And so to see how far you came from somebody who was sleeping all day long and felt like crap. Now, you know, when we, I've kind of changed my tune through the years too, instead of throwing a buttload of supplements at people other than ones that really drive down inflammation, You've got to go to what we know is going to move it out, which is you've gotta take fish oil, that'll improve your membrane fluidity of your cells, and you gotta get a binder in, even if it's a tiny amount.

And something is better than nothing, because you did all kinds of things. You did hyperbaric oxygen, you a lot of IV therapy and those kinds things, those things helped. But really, it was being able to ingest the colostire mean and get it in. And I really appreciate what you had to say about that, Norma. It's not easy. But when you're investing in the health of your child or yourself, you just have to go, I've got to do this. I have got prioritize this, so. And I think that that just, it just goes to show how much of a toxic overload I had.

The fact that I didn't feel immediate relief the second I started, because now, I mean, still do cycle through CSM from time to time. my hospitals are still moldy. I have a higher threshold now, thankfully, and so it doesn't bother me the same, but I still go through periods where like, it's probably a good idea to go to another round of some CSM cleanse my system. And now it kind of hits me harder at first than it did, because I'm You know, there's, it's like stirring up stuff that's deep, whereas before it was just bubbling up the surface.

And I'm like, felt actual relief in the beginning and then first Alzheimer's did start, but in beginning I didn't. I was like wow, this is great. Yeah. Talk about that before we got on this call. It's She did, like you said, she did multiple modalities and you again, you were just getting started in this journey as a, as the provider, but you know, we had full faith and I want to impress upon other people that. We, you were always open to us trying and you weren't, unless you felt it was going to directly prohibit what you had already had going for her, but you are open us doing the hyperbarics, which we, again, like when people don't believe that this is real, they'll only do so much.

Like only, do something in your town. Only, we were driving to Dallas. for six weeks, every week for four to three days. And I mean, like we were willing to try anything. So, and you hadn't introduced the ozone therapy yet, which was, you know, it was just a tiny, right? We didn't know about it. You didn' know. But so we did the hyperbarics, she did hyperborex and, the cold styramine and just supporting her. body the best that we could providing rest providing the other. the support with the omegas and all of that.

Yeah. I appreciate you saying that because if it's not going to do any harm and if people want to those things, absolutely. But you know, at the crux of SIRS, biotoxin illness is part of our mitochondria. It's called the sarsen, ricin loop. And people have heard of sarin gas, it is a biological toxin, but that sersen ricen loop every living organism has that and that's what makes ATP or energy. And that gets poisoned and so anything that would kind of supercharge the mitochondria. So that is where the utility of hyperbaric oxygen or ozone comes in.

It kind kicks it up a notch, but, you know, maintaining the purity of just pulling garbage out of your body. And it's so hard. You know that we all go through phases because I've got CSRS too. It's like, I'm like you Riley, for years and years, and I had no idea what was making me sick. I'd ballooned up. morbidly obese and severely depressed and all that, and then little did I know that my house was extremely water damaged. And all these signs and symptoms, you know, three out of my four kids with autoimmunity, two with PANS, PANTAS.

all for with vector-borne illness. We just didn't know what we didn t know. And so it's a journey. It's journey and I appreciate you talking about that, Norman, because I'm not going to slam other modalities and things. I am just going say, though, that the strength of the binders. There are some people that have Lyme disease that do not, cannot take colostironamine or Wellcall. So we have to try something else. Like there's something called the okrapepsin E3 that's got four binding sites on it a lot like colastironame.

But you know, I appreciate your balanced comments on that because I, and your story Riley is so encouraging. I mean, of everything that you've gone through and now I mean, you're working as a NICU nurse and you are thriving, really. You are. So, Norma, as mom observing Riley and being a registered nurse, your perspective too as you hash over what's going on and just the encouragement that you can give to parents too, is they walk through this journey. It's really hard for people to go. My kid has ADD, ADHD, and then we pull out the mold card and they're like, what?

You're nuts. You know, I came for anxiety and the ADT and now you're telling me I got this mold illness. And, you know next thing I know their house is like not good. We're, like you never going to cross the finish line unless we address this. Because one thing can potentiate the other and intensify the So if you have a tendency or genetics predisposition for pans pandas or a detox breakdown and in your detox pathways, and then you're exposed to mold, I mean, recipe for disaster. I'll just be dramatic.

Disaster. And I, of late I've been doing IV in people's homes and I can walk in and just actually come up a situation and it's not my place to. It's just because I've lived it and I worked with you for so long. And it just like, Oh, have you thought about, you know, and there's sometimes they're like you Maybe, I don't know, but you can just tell by the dynamic of the family, how the child is acting, what's going on in the house and all that. I'd like to thank Fagran Genomics for sponsoring our podcast.

Without knowing what your precision genetics are, you don' have a roadmap. So please log on to our website, schedule a welcome call, and see what the Wellness Blueprint can do for you. That's the premier and proprietary genetic panel that Fagran has allowed us to create. Yeah, or like people calling you for the IVs because they're just out of energy or they get sick so often and then you know and there's a certain amount of resiliency that the body, you I mean, we can avoid these places. And like you said, Riley, you know, working in hospitals, certain parts of hospitals are uber clean and others are not.

Seattle Children's Hospital had to close because three or four children died from mold that was in their ventilation. Yeah, it was really bad. They're reopened now, I believe. You know, in retrospect, as someone who was blown and going and surviving and thriving and go into college and then getting sick, what would your message be to college students that start noticing what's happening to their body? I would just say to like, trust your gut, like no pun intended, but like if you know that that's not you and you that your lifestyle hasn't dramatically changed, than to believe what your body is going to tell you, because that is what symptoms are.

Lifestyle Changes and Family Perspective 33:00

It's just a way of our body telling us that something is wrong, and to look into it, to see it. See someone that knows what mold is, even though it's hidden. Just keep your eyes peeled for certain signs of high humidity in the place, anything that could signal water damage. Yeah. And then, you know, as far as like the journey to get better, what you stated was it took a while. I mean, it didn't happen overnight. You hear about some people that get well really quick, but I think once a person who's genetically vulnerable sears when the pathways are activated and they're sucked down into that vortex, What would you want to tell them as as walking the Journey?

Definitely slow and steady wins the race. It's consistency, a lot of consistency and just really being intuitive to your body. What's working, what's not working and the lifestyle, the life style change was huge for me. So by lifestyle change, what do you mean by that? So I think that some of the first things I started doing was food-related, just doing anti-inflammatory diet, gluten-free and dairy- free for a while, no seed oils, eating out less. I drank tons of water to flush out lymphatic toxins, all of that.

And I also think it grounded me when I had anxiety. Exercising. I believed for a long time after I got sick that I wasn't strong enough to exercise. And I remember I had, I think I have this conversation with you, Dr. K. Is it okay for me to work out? Because I felt so weak. I was like, oh, surely this isn't good for you, but you were like no, I encourage you to move your body that'll only make you stronger, that will only flush out more things, you know? And so I would encourage anyone listening who feels that way to even if it's just a brisk walk, if that's all you can muster up for the day, like just keep your moving because that also helped me mentally as well with the anxiety.

And that's something that we as a family who are on the other side of this have really embraced is like the benefits of exercise and lymphatic drainage, especially, you know, even if you can't do a strong workout, you can do things to support your lymphatic drainage that we've learned since early on. But you've got vibration plates now and you got red light therapy, which we didn't know anything about at the time. And like she said, just brisk walks, moving your body and moving you lymphic drainage because that's all part of your detox.

system. And if I could just add a quick story, Dr. K, I feel like it's pertinent. I have three kids and so my son He also reacts to mold, but he has wonderful detox pathways. So I can see a stark difference between these two. Whereas she gets bogged down with illness and like she says, brain on fire. If my son is removed from, he gets like nose bleeds and has like a, like he can tell the smell because it comes out of his pores. He says he smells like onions, but he, once he's removed from the environment and we do a few rounds of ozone and some, uh, get him back on binder, you know, just to kind of do like a quickie.

I mean, like his is a. Yeah. He's better in like. And so, and he's not near as sick and debilitated as she gets. So just to show you, everyone is different. Same family. Yeah. I really appreciate you bringing up the difference in the detoxification pathways. Norma, would you tell us what you noticed about Riley when she was really little, if we are going back and thinking about detoxication, but brain inflammation? What did you start noticing when she was little, when you learned what Pan's Pandas was?

Yeah, definitely. So I didn't know what Pans Pandus was back then. Again, like not in the functional world at all, still working in a hospital system. But remember what I said about her being attached to me when came home from college and we didn' want to go back? We had anything with change and anytime, I couldn't even get away to like a church retreat. And my husband was fighting her because she wanted to call me, call, me and she would just cry. We always joke because you know how moms are called helicopter moms and we're wondering like on Life 360, like she's stalking me.

Yeah. And, and to be with me and worried about me. So it was just like a fixation of sorts. Yeah, so there was that and anything with change. Like we got some different car seats installed, like literal seats of a vehicle installed in my new car and he was very difficult to deal with. Like, it was out of the norm. It wasn't just like, oh darn, I'm gonna miss those seats. it Was like crying fits and I can't live without that. I mean, It was just very, and my other kids are like this is exciting. like why are we, what's the problem, you know?

And so just anything that would set her in a tailspin was very difficulty to bring her back. Whereas another child or my other two kids, you could be like, listen, this is the way it is and it's going to be fine. That wasn't good enough. It was like she couldn't hear you anymore. She was in her own world, her just spiral out of reality almost. Yeah. You know, it's interesting you bring that up because all of these sciency people not talking and sharing together in our practice, all the kids and adults that meet the clinical criteria or diagnostic criteria for pans or pandas, according to the Aspire.care website, every single one of them has SIRS.

So it is like SERS is a quarter of the population. has a genetic vulnerability that opens up the blood-brain barrier and the gut-blood barrier, and then something triggers it. But rightly, one thing that I think is really important, there's a condition called precocious puberty, where we see this much more in girls than we do in boys. But I think it's really important to bring this out. It's that you started going through puberty at a young age. We know like you brought up that your detoxification pathways are abysmal.

They're just terrible. And in our practice, every little girl that we have seen that is moving through Puberty too early has terrible detoxication and they have SERS too. So You know, would it, could it shoulda? I mean, you know looking back, learning what you learned, I guess this would be more of a question for you, Norma. If a parent could do something to gift their children, what would you recommend that they gift they're children with that kind of tells them about their detoxification pathways?

Well, I'll just say it. It's like, it's their precision genetics. Sorry, my mind was going everywhere, but yes, definitely. And I have asked you this question before, Dr. K. Because again, like my, my background is NICU and PDIC and we're doing, I remember asking you specifically, why don't we do this? We do the newborn screen where you prick the heel and you, we test for now. I think it's maybe up to 50. Okay, but at one point, I think it was like seven or eight genetic, you know, cystic fibrosis, things like that.

But I was, like, when I started learning about all this, and you said, well, it's expensive and just the state is not on board with that yet. And so that's what you do now. I mean, we always talk about what we would do differently for like I can't do it over again, and their grand baby, you know,

Genetics, PANS, and Advocacy for Children 42:00

my grand babies eventually and hopefully a quick cheek swap. I mean, I just want to cry every time I meet someone in the IV room who just had a baby and they're like, we're getting our baby's genetics back today. And I'm just like. Praise God. Like that is going to set the tone for their life at the get go. and then, also not to get into this, but whole vaccine thing, like then I look back and want to just like kick myself in the rear end for vaccinating her when I did and how I do it because of her genetics.

Like I said, my son is fine. I mean I got smarter as the Gardasil came on board. None of my kids got the Gartasil, but again, I just looked back I wish I could be due to that. People have the option now. You have to knowledge to do your newborn screen with just a cheek swab for your new born baby. you have an option to make changes and different choices for the vaccines and what you put in. Because if you do have a child that's one in four, you cannot detox those things. you're stepping on a slippery slope.

Yes, yes. So basically, Fagran is the sponsor of our podcast. And I talk about this, it's either the Wellness Blueprint or the Newborn Panel. I like the wellness blueprint because it has everything on it, proprietary, they let me develop it. but it truly is a gift because it allows you to be proactive. And you're just basically expressing that. I mean, Riley, if you could do things over again, you would have loved not to have had precocious puberty, right? Yeah. Did you do what kind of shots? Was it Lupron?

So it's a gift and it's, you know, we're not looking for diseases or things like that, but it is the symphony and the beautiful systems of our bodies. And if we can put in what we need and not guess, and then don't do things, people just go, oh, that looks good. I think I'll take some of that or that. It's like, no, pick the right stuff, the time, right amount and layer it in. If you can do it from infancy on up, then you're creating a beautiful environment for your child to hopefully fend off and lessen the chances of bad things happening.

So Riley, I just really want to thank you and you too, Norma, because you're an example of someone who's been through this and it hit you in your prime of life being a college student and then you were able to make up for that time you took off and you've been blessed abundantly and, you know, to, I mean, well, your smart cookie too, but I meant to have all that crap torn out of your brain in your body and to have a new lease on life. And then when you choose to half kids down the road, you're like, yeah, we're going to do this panel and we are going set them up for success.

You know, Norma, your pediatric NICU nurse, so are you Riley and then me being a board certified pediatrician, but I treat womb to tomb. But I'm not anti-vaccine, I am pro-immunization and pro patient. find out the uniqueness. So why should we have a cookie cutter approach to vaccines when none of us are alike? So I love that you brought that up, Norma. And I would just say to any parent, you know, never back down in advocating for your child. I mean, I'm sure there are times that can recall that I questioned you, Dr.

K, like not even knowing what I was talking about, but still going like Riley said on your gut instinct, We, we can't go on this way or help us get through this hard time. And, you know, with the vaccines or whatever, advocate for your child, Advocate for delay. If that's what you can do. I mean, it's just don't ever let someone strong arm you into doing what. You're not ready to do or don' believe in your gut. They're in, your spirit is right for. Your child. I'm so glad you said that because it's true.

It's like that intuition is there for a reason. And if something doesn't sit right, don't do it. So in retrospect, I want you guys to each think about something you would tell the listening audience as far as, okay, you're diagnosed with SIRS. You're on this journey. What words of hope and encouragement would you give to them, Riley? Just that it's only temporary. The pain is temporary, there's always brighter days ahead. Lean on your faith because at the end of the day, we have all this amazing medicine, functional medicine that plays a huge part in our healing, but we are part of The Ultimate Healer and He does care about you, He cares about...

His whole creation and the days that I was unsure how I ever was going to get better. I just, you know, when supplements filled me or whatever therapy I did failed me at the time. It's never hopeless because I have a God who can heal me the snap of his fingers. It can be hard to think this way, but just lean into what he's showing you through this, how he is building your character through, this how you can help all your people down the line through and that gets you though the hard days knowing that there is a purpose.

Thank you so much for that. I totally resonate with that and Norma, how about you? I bet you're sitting here going, that's my daughter talking. Wow. This is my grown daughter.

Faith, Hope, and Closing Remarks 48:00

All my blood, sweat and tears and prayers. She's not a clingy, separation anxiety, pandas kid anymore. It's still labeled as the barnacle in her phone. But it's in a more healthy way. Yeah, maybe a few days without talking sometimes now. Yeah. But I just think that, you know, God allowed us to be connected like that for a reason. And I'm with her, like you just cannot walk through this without a strong faith and a hope and the promise. that God has provided for us. And you also have to, you know, there's so many things, times you can get hung up on like, okay, yes, I need to surrender and yes I to let God and let him do his work in me and absolutely 1000%. But he also calls on us to walk in what he has for like Riley said, like even if it's going to be difficult and on down the line.

We have to trust that He's walking us through this for a reason. And I always say my Prower of a Praying parent book is stained with lots of tears and just calling out for wisdom. and direction, and hope for healing is based on faith as well. I know there are other practices that do use functional medicine, but they're not always rooted in faith and surrender to our God. And that is something that has been super important to us. throughout the journey because when you are down on your face and you have nothing else and nothing seems to be working because there have been some, some valleys where nothing seemed to moving the needle for her.

And that was in that first year or two. It was just like, okay, like what do you, what you do have for Her Lord? Like worry. We're open to hear it. Yeah. I'm so grateful for those words of encouragement. And I will tell you too that there are times that as a provider, I just pray and I ask God to give me wisdom because it's like the person in front of me is made in the image of God and i want to help them. whether they believe in the same God that I do, I am going to serve them as if I'm serving Him.

And our motivation and all the providers here share that and desire to just love people. So I just thank you guys for your time on a Saturday. I think that this is going encourage some folks out there that, you know, it's not a magical fix. It takes time. You know, when you get on social media, so many people are like, oh, this happened and that happened, and things seem so glamorous. But that's not reality. Reality, like you said, are valleys where things don't seem to work and it's like we do three steps forward.

two steps back, three steps forward, two step back. And it's like, what can I do? And so thank you for sharing your journey. So, all right. Well, I wish you the best Riley, you too, Norma, and I will say, I remember when I met you when we both worked at a local community hospital that was doing work for a premiered children's hospital. We've been through a lot and I'm so grateful for your friendship and just the insight that you bring and the encouragement. So, all right, you guys take care and thanks for you time on a Saturday.

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