I had another great conversation with Christa Biegler on the subject of pediatric autoimmune neuropsychiatric syndrome, or PANs, on the Less-Stressed Life Podcast. Christa and I dig into how this condition typically presents and what parents should be aware of and looking for to help their child. If you, or anyone you know, has a child suffering from a sudden onset of OCD, disordered/restrictive eating, behavioral regulation issues, urinary symptoms, separation anxiety, anxiety, tics, or more, don’t neglect to rule out the immune system is playing a pivotal role in how the brain is functioning.
- What are PANS/PANDAS, what are the hallmark symptoms, & how to treat it
- What's part of the treatment pie in PANDAS
HELPFUL TIPS ON:
- Testing recommendations for PANS/PANDAS
- How can your PCP rule out strep?
- What supplements can help with the prevention & treatment of symptoms of PANDAS?
With hope for better health for everyone,
Dr. Emily Gutierrez, DNP, C-PNP, IFMCP, PMHS, CCN
Doctor of Nursing Practice, Certified Pediatric Nurse Practitioner, Institute of Functional Medicine Certified Practitioner, Certified Primary Care Mental Health Specialist, and Certified Clinical Nutritionist
Episode Link : https://kite.link/268-PANS-PANDAS-OCD
All right. Today on the Less Stress Life I have Dr. Emily Gutierrez, who is, uh, the chief scientific formulator and co-founder of Neuro Nutrients and has over a decade of clinical experience managing patients in her busy practice with Neuronutrition Associates. One of the first pediatric focus functional medicine practices opened in the United States. She received her doctorate from John Hopkins University with a focus in translational medicine as a doctor of nursing practice. And she received her master's degree from the University of Texas at Austin and is a board certified as a pediatric nurse practitioner. She's also board certified through the Institute of Functional Medicine, a clinical nutritionist and board certified as a primary care mental health specialist. In addition to actively managing her patients in her private practice in Austin, Texas, she's also adjunct faculty at John Hopkins University, where she lectures on integrative functional medicine. She's published in peer-reviewed literature multiple times. However, one of her favorite accomplishments was publishing the first chapter on an integrative and functional medicine. Uh, she's, she's published the first chapter in a integrative functional medicine textbook for primary care providers. Dr. Gut continues to be an active researcher, writer, speaker, and her passion for formulating science-based nutrient compounds that meet the strictest standards of quality and efficacy continue to be our favorite tool in managing patients. Welcome, Dr. Gutierrez.
Well, thank you very much. Thanks for having me.
So, which, uh, what is the textbook called for primary care providers? Cause I have a friend who helped edit another integrative and functional medicine textbook, but more gear who are nutrition professionals.
Yeah, it's Burns Pediatric Primary Care, and it's published by, um, L Sevier. And I tell you, that is the least amount of money I've ever been paid to publish anything. And it took me the longest amount of work. I mean, I think I worked on that chapter for about a year. Um, and when you publish in a textbook, you don't do it for the money, um, you do it to bring science forward. And it was exciting because, you know, this is a very allopathic book that, uh, nurse practitioners are trained through it's primary care. And then there's this little chapter in the big, big book on integrative and functional medicine. So I consider it a big win for our genre.
Yeah, that's cool. I didn't realize it was an allopathic book and you kind of got the corner of <laugh> of presenting integrative and functional medicine. Thanks for putting our best foot forward there. Um, so we're gonna get into a tricky topic today. And I was talking with you off recording about I was so happy that you have such a pedia, your focus is pediatric focused because I think people are always looking for pediatric resources. At least that's how I feel. And so, but you, not only that, it focuses on some the more challenging topics, which is pans, pans autism. So we're gonna over the course of a couple of interviews, talk about both and we'll start with pans today. But first I would love to hear, you know, we brought, we talked about your credentials before we got started here, and I'd love to hear about your story of why you kind of decided to get into integrative and functional medicine, um, from the start and kind of where that, where that began or where you kind of, if you made a pivot, when and why you made that pivot.
That's a great question. And I feel like all of us integrative functional people really have a story behind why we ended up doing this genre of medicine. And it really started off by location, to be honest with you. I live in Austin, Texas where the motto of the city is keep it weird. And so coming into allopathic right out of school doing primary care, um, I joined a clinic that was not as stringent on making kids stay on the vaccine schedule. So there was a lot of families that are, um, kind of have an alternative approach to how they wanna handle their children's health. And so I used to dread those rooms, you know, cuz they'd have all these questions about all these things and they'd want me to, you know, not treat their, their kids' ear infection with an antibiotic or they wanted know we essential oil to put on their kids' feet.
And I just felt woefully under, um, prepared to really collaborate with these families that, you know, I was their healthcare provider, but I did not know how to provide the kind of healthcare that they were seeking. So when I got to Hopkins, we literally spent six months working on what is our problem in practice. And, you know, once you determine your problem, you, you determine on, you know, what does the literature say and what does the evidence say on how can you, um, how can you transform your practice problem? So a doctor of nursing practice is a clinical doctorate. It means we, we take what we know and we translate it into Beck's practices. So my problem was I didn't know how to really take care of these kids in a way that met these families, um, that had this, you know, belief about healthcare that I wasn't taught about.
And so it set me on this journey and I really started to learn about integrative medicine and what was science based and what was evidence based. And I think anybody that tips their toe into trying to learn how to be integrated eventually will become functional. You know, so if your listeners don't know integrative is what else can I do for this condition? So if it's anxiety, is it, you know, cognitive behavioral therapy? Is it tapping? Is it, um, magnesium three innate? Like what else can I do? And functional is why do you have this condition to begin with? What went wrong along the way to develop, you know, this chronic condition that you're dealing with? Yeah. So that's, that's kind of a brief on my journey on how I got here.
Well, one, you speak about it in a very collaborative way, which is appreciated. And usually, like you said, there is some kind of story and usually it does start with someone's personal experience, um, in some capacity. But your experience was, your personal experience was just how you were, what you were kind of thrown into, and you wanting to work with these people instead of working against. And that's, we, we have that relationship with ourselves a lot working with our body instead of against it. And that happens a lot in our care working with someone instead of against it. But you took a very collaborative approach and angle, and I think it makes sense that you ended up in integrative and functional medicine because the common denominator there is just asking better questions and asking deeper questions. And so it sounds like that's always been a, a piece for you is asking better questions and deeper questions. So I'm not surprised that you ended up with, well, I would consider more significant or more severe cases, right. That challenge your brain a little bit more.
Oh, very much so. I mean, I went from seeing 25 patients a day to now, if I see more than four, I, I literally can't chart At the end of the day, I need to go to sleep and chart in the morning because my brain is full and I just cannot. It's just everyone I see is so complex that I'm, you know, four is enough, four is enough to keep me to where I feel like, all right, I can, I can still manage my own life and, and jump into these really hard things with these families over and over again throughout the day.
Well, thanks for being transparent about that, because that has come up a lot for even me and our practice over the last couple of years. But I've often thought that, especially I interviewed a, a past peed he onk doctor in the last couple of months, and now she coaches doctors on burnout. And I don't think anyone wants to see 25 people a day. How can you be a comprehensive provider with 25 people a day? You just cannot, it doesn't work. Like if someone has a severe condition, that's not gonna work for them. They just, it's not, it's not within that scope or the timeframe scope. So speaking of complicated cases, let's jump into pans and pandas. Will you tell us about how you ended up in that niche and a little bit about it?
While I ended up in the niche, because I do functional medicine for certain, I have a, I have my own experience, um, uh, having a child with pants, of course, at the time that it was, was happening to him when he was 10, we had absolutely no idea what was happening. Now, thankfully, he's an adult, he's in college, he's doing well. Um, but it is something that, you know, when you are have this mantra of, I'm gonna look for the root cause of your condition, I'm gonna get to the bottom of it, you're gonna see a lot of infection, a lot because infection, um, is one of the root causes and how your immune system is writing lining, as you know, on how your neurological system is doing. And you know, these kids came and they keep coming, and families need a provider that one will acknowledge that the condition exists and two that have even the slightest idea on how to treat it.
Yeah. That's the sad part when there's something that's not well recognized yet. So maybe we should talk about that. Talk to me about pans and panas being recognized in our conventional medical care model and kind of when that started to emerge functionally and just kind of what that landscape looks like and what it stands for.
Well, yeah, well you can call it pans or pandas, but they're all really an autoimmune encephalitis. So what that means is your immune system had some dysregulation and now there's some inflammation of the brain and neuro dysregulation. Um, classically it happened from strep. I mean, pediatric autoimmune neuropsychiatric disorder related to streptococcus is pandas. That's classically what we saw. And over the years it's just been become pretty aware that really anything that can cause a lot of inflammation and stress on the body can cause one of these, um, encephalopathies. So, you know, originally you identified the strep and you treated the strep and hopefully the symptoms go away. And there's two major har hallmark symptoms, and maybe this is why it's missed because they're both really neuropsychiatric symptoms. The two hallmarks are restrictive eating or disordered eating and obsessive compulsive disorder. So there's other ones that go along with it, such as, um, urinary dysfunction.
So a kid that is, you know, nine and starts wetting the bed or urinary frequency. Um, a lot of separation anxiety. Uh, sometimes you can have a regression in either milestones if you're autistic or, um, even learning and writing if you're non-autistic or if you're autistic and have those skills. Um, so you can see that, you can see a lot of, just a lot of anger and a lot of anxiety. Um, and it's kind of like parents are like, what happened to my kid? He was doing great. He was going along happy, healthy, full life there. I don't think that there's been trauma. I don't know what happened to this kid, but all of a sudden they have these overnight kind of abrupt behaviors that really dominate their existence. Um, and so then when that happens, you know, hopefully now the pediatricians are at least saying, Hey, let's swab your, your throat for strep.
And by the way, sometimes kids get perianal strep, so you need to go swabbing their bottoms too. Um, and then strep can hide in the sinuses. Strep can hide in the gut. So it's not always as simple as like, Hey, let's do a strep screen and find it. Um, but if you find it early enough and it is strep, the answer isn't, let's put you on Prozac for your O C D, the answer is let's give you an antibiotic and eradicate the strep. And in within 24 hours, some of these kids get better. Um, so the earlier the treatment, the better the outcome. But if somebody's had an encephalopathy that has been missed for years and years, they're not gonna get better in 24 hours. It takes a lot of work to get 'em better.
Hmm. Okay. So this kind of helps me piece out some questions. So is it always strep? Because the way you described that, it made it kind of sound like it could be any infection that's causing brain inflammation also.
Mm-hmm. <affirmative>, it's really, it's an immune system issue too. Mm-hmm. <affirmative>, right? Because, yeah, so strep is one of the common triggers, but I could read you a list of things that can trigger it. I mean, mycoplasma, um, Lyme, Lyme coinfections, um, we can have varicella influenza C and the list goes on and on and on. And the the tricky part is, is you can maybe find the infection or maybe not find the infection. So a lot of people that treat pans, you know, if you wanna send a kid three times to the, to the lab to figure out what infection is, is active, you can, sometimes you can do like a Cunningham panel and it shows more brain inflammation. Those are really expensive. They're, you know, about a grand and not all families can do it. So you go on the hunt for like, where's the infection?
I guess what you don't always find it because it's so multifactorial on what it could have been the trigger. So even then, if you find the infection, say you find mycoplasma pneumonia, well, mycoplasma is best treated by macrolide antibiotic. Um, like azithromycin, sometimes you'll put somebody on an extended course of azithromycin and their mycoplasma blood level doesn't really change much and they still have symptoms. So even when you start clearing out some of these symptoms, it's just if the immune system is overly, you know, if it's, if it's ramped up, you have to be able to turn it down back to that homeostasis versus like having this exaggerated response that even despite you have cleared the infection, it's still ramping up.
Mm, that does make sense. So it could be strep maybe if you do a strep test. I mean, what I'm really wondering is how long this can sit latent. This feels like yours. And so when you say treat it early with antibiotics, what's the actual timeframe on early? Is that like, like cuz you said it could be an overnight switch of neuro being affected with this inflammation in the brain. Um, so is it a week or two weeks or a month or is, is it six months is early? I don't know what's early.
It's hard. It's hard to know because, you know, if you were like, oh, Johnny went to a birthday party last weekend and, and his friend had strep and then two weeks later he's has this, he's, he has motor ticks, that's another hallmark of it. Motor ticks and OCDs. Now he is tapping all the lights before he goes down the stairs or he is having to count before he chews. I mean, then you go, okay, maybe it was, you know, maybe it was strep then. And if you treat that kid and he gets better within one to two days, it probably was really recent that he was affected. So it's hard. I had a patient today, um, pan's patient and remission really three years, um, went back to school, um, you know, doing okay. But what came back was the ticks and the O C D and mom knew in her head, she was like, all right, I gotta go get her treated for strep.
And, and she had strep, the sibling had strep, they put her on an antibiotic and within 24 hours she, her, all her symptoms were gone. And fortunately over the course of the antibiotic, her symptoms are starting to come back. So we're working with her on like kind of what else is going on. Um, and sometimes you just need an extended course. I don't know when she got it, you know, was it at the beginning of school? Was it a week ago? I don't know. But I think the longer that you have an infection that isn't treated in your body, the worst the encephalitis can become. Mm-hmm.
<affirmative>, well I wanna talk about that, but going back to this client, did you say that she was a previous PANS client in remission and now it's back? So it kind of seems like, you know, once that immune, I think the question is once I've got that injury, it's like once you have brain inflammation injury, isn't it easier to maybe like, have the same type of injury and get a little faster sooner, potentially?
Oh yeah, exactly. Just like traumatic brain injury or TBI you're talking about, you know, you get one concussion, it can be bad, but successive concussions can be more, have more and more of an exaggerated response. So yes, I mean, it's plausible to put pans or pandas in remissions certainly, but there's something called a flare. And the flare is we were doing really bad, we got treatment, we were doing really, really well. And then all of a sudden the symptoms are creeping back and then they come back down and then they creep back up and they come back down. And some kids wax and wane quite a bit. Other kids only will have one or two flares and they're done. Um, but having infection is their vulnerabilities are gonna have some neuropsychiatric symptoms along with it. And that might be the only clue that there's a new infection.
Yeah. This is hard for parents. I want to know, we're talking about kids, but does this something apply to children?
I think the more that this condition is recognized, the more that we're seeing that, um, no adults, young adults, you'll see it in the young adult population. Um, young adults can have the same type of phenomenon too. It's more likely to present in childhood. Like I just haven't been a lot around that long. Right. But I think that, you know, some of my patients that come to me that are 17 or 18, and we really go through the history, I wonder if they had an, like some type of autoimmune encephalitis way, way, way, way back in their history that just never was treated. And then, you know, how to unpack where they are is so much more difficult mm-hmm. <affirmative>, because it's been around for so long.
I wonder also if on the same note of it's like a tbi, the infection causes brain inflammation and if a kid already has a, has had some kind of brain inflammation not related to strep, strep, a bacteria or some other infection, they literally have a physical impact and they get inflammation in the brain if this would also go after that sensitive area, you know what I mean? Like, if you've already had a brain, a brain, um, you know, if you've already hit your head sometime, you know, would it be easier for you to have a pandas flare if you got infected with some infection including strep or something else?
I don't know. I think that's a really interesting question and I, and honestly, I've never heard anybody talk about that correlation before. Um, I do know that there are some populations that are more vulnerable to having pans and pandas and when we talk about autism, we'll we'll talk about kind of how they're immunologically based too. You'll, you'll see the incidence of of having a pans pandas flare in the autistic population is so much greater. Yeah. Um, so you
Yeah, I mean, and, and you know, I mean, autism affects the brain, right? Mm-hmm. <affirmative>. So I think it really comes back to increasing resilience in the systems. Yeah. Right.
I I think we should talk about that <laugh>. Okay. Talk about, talk about, that's actually like the holy grail. How do you improve the terrain? How do you improve the terrain? It's like there's a lot of potential pieces. And maybe another way to phrase a question or maybe a more of a lead in conversation is what's part of the treatment pie in pandas
Mm-hmm. <affirmative>, well first trying to figure out what the trigger was, but you don't always figure out what the trigger is. And then, you know, just like treating the gut very simplistically, you take out what's stressing out the body and replace what the body is missing mm-hmm. <affirmative>. And so you have to think about a lot of times, because restrictive eating is a hallmark of this, and they're so nutritionally deficient in so many ways. You know, zinc deficiency, magnesium deficiency, iron, you name it. So you know, you need all those nutrients to have an ideal opting, functioning immune system. And these kids are terrible eaters typically. Mm-hmm. <affirmative>. So, you know, increasing their nutritional status, um, making sure that you're really optimizing their gut and then, you know, doing other things like getting them moving, getting them in early sunshine, um, making sure that, you know, their stressors are as mitigated as you can around school and around the family.
So it's, it's definitely a holistic approach to exploring the systems. And everybody's different based on their history, right? Mm-hmm. <affirmative>. So if I have a kid that has pandas that has super bad eczema, um, I'm gonna think what's, what's going on with their gut and what's going on with their inflammation around their food? Those are the things that we're really gonna focus on. Now, if I have somebody that they keep having, um, level one or two of lead coming up in their serum, um, I'll start to think about, oh my gosh, does this person have he v metal toxicity and it's being stored and that's why we're not seeing these dangerous levels that the lab is calling me about. Mm-hmm. <affirmative>
Interesting. So yeah, so many potential toxic burdens, or like you said, infection, potential infections. And I think about, you know, sometimes what parents really want or what any family really wants is something if you are like, gosh, my kid is just not my kid anymore, what we're always looking for anytime something is awry is a diagnosis. And so pans and panas can give us like some validation and comfort potentially in that, even though there's like a, a bit of a mountain to climb after that fact. But then I also wonder about, um, is it not pans or pandas, but infections in general can cause some of those same symptoms and I don't know, but I think about it and I think about how kids can have different eating patterns or picky eating or whatever. And so I have questions about when we really started to recognize pan, I think pans and panda, when do we start to really recognize that, um, and say this is what it is. And it sounds like the diagnostics are maybe a little bit malleable. Um, is there a particular diagnostic criteria that you for sure check for a pans or panda's diagnosis?
I think the diagnostic criteria is evolved over time. And really the pioneer of all this work is, uh, Dr. Suedo at the National Institute of Health. And, you know, she started working on this in the late nineties. So over my career, really over the last 15 years, I mean, I didn't hear, I, I didn't know what pandas was 15 years ago. Right. Um, and today most pediatricians have at least heard it about it. Not all of 'em think it's real. And some will dismiss a family and say, oh my gosh, you know, this is so controversial. Um, I had a patient once tell me that their ophthalmologist was the one, cuz this kid had a blinking tick and ophthalmologist was like, oh, you should go check her out for pandas. Um, they went to the pediatrician. The pediatrician said, that doesn't exist. That doesn't exist.
That's not a thing. Um, but it was a thing and she had pandas and she got treated for it and she got better and the tick went away completely. Um, so the diagnostic criteria is, you know, it's a little tricky because it's like you got, you really gotta have the, the two o c d of some sort. And, and o c d really OCD is, is a funny one because it's not always com compulsions that are physical. Like I maybe, maybe tapping or hand washing. Um, or it can be an OCD can be a thought. Have you ever heard of something called harm avoidance, ocd? Mm-hmm. <affirmative>. So classically it can happen to, to moms after they have their baby and they have postpartum, if they have a lot of postpartum depression or anxiety, the the thought is I'm gonna harm my baby. Mm-hmm. <affirmative>, that's the OCD thought.
The compulsion is to get away from their baby cuz they're afraid of themselves. So sometimes I'll have patients that'll come and, and they're having these harmed thoughts to other friends or family or whatever, and they don't say anything about it because they're so afraid of themselves. They think there's some kind of crazy monster when really it's just an ocd. So OCD is tricky. It can manifest in a lot of different ways, but OCD is one of the hallmarks. And then disordered eating of some sort. So I've had patients that have, you know, lost 30 pounds in six months because of their restrictive eating that are so ketotic that you're checking blood sugars mm-hmm. <affirmative> just to make sure that they haven't developed a type one. And then, or some that's like, you know, they'll only eat, you know, gif peanut butter and wonderbread and that is it. They won't touch anything else. You know, this
Is above a picky eater by a long
Shot. Oh yeah. Oh yeah. Yeah. There's usually some type of really restrictive food, um, component to it. So those are, but then there's the, you know, the overnight thing. I think the overnight thing, a lot of practitioners kind of can get hung up on it. Mm-hmm. <affirmative>, I think when it's classic pans and pandas, you're gonna see them have a pretty abrupt change. But overnight might be three months. Like, oh, you know, last year before we started school he had no problem. Like, he went into school and it was fun and he couldn't wait to go and everybody, you know, and this year won't get out of the car. You know, having a lot of separation anxiety, having a lot of O C D, you know, all of the things. So it's not, it, it, it's not a hundred percent clear all the time, but the history will lead you down the path. Mm-hmm. <affirmative>. And then a lot of times you'll have at least two or three of those other things. Um, you know, the super aggressive, um, emotional dysregulation, um, urinary issues, either frequency or bedwetting. Um, you know, separation anxiety can be really bad. So it's just, it's it's, it's clear but it's not clear. Mm-hmm. <affirmative>, is that, is that a fair answer?
I get it. But as a diagnostic clinician, so I think I have two questions. Is there an I c D 10 code for pans? Um,
They're making one. They're
Making one. That's part of the issue, right? That's why it's like, it's not real. Cause we don't have a code to assign a two for billing, you know, I'm just thinking about it from everyone's perspective. And
Then Sure. There's also encephalitis. I mean, you can put encephalitis not otherwise specified, but they are making a, they, I just went to a conference this past weekend that all we talked about for four days was pandas and pans and autism. Um, and that's what we were told at the conference that they are making a code for, um, for pans.
So with that, so often, I mean, I'm not a diag, I'm not a diagnostic clinician, but, and I understand that sometimes those diagnoses, but usually there's like kind of a stair step. And so you're saying like if you've got some of those classic Hallmark 1 23, you as a diagnosing clinician can say you have pans or enlo not specified.
Yeah, I think over time it, it, it builds the, you know, the story and then if you're, if you're, if you treat and someone gets better, it confirms the diagnosis. Yeah. So sometimes, you know, sometimes people use a Cunningham panel, but not all neurologists, not all infectious disease doctors, they, they look at that and they're like, what am I gonna do with this? You know? So I don't know how much utility it, it, it is in the market, but a lot of people use it for kind of confirmation because like I said at the beginning, I can show you my list of things to look for mm-hmm. <affirmative> and it is so long. Mm-hmm. <affirmative>, you know, it is so long. And then that doesn't even account for, okay, there's all these infections that you can look for in the blood. Lyme co-infections be at Bartella, you name it, it doesn't count for you should be swabbing the sinuses, you should be swabbing the throat, you should be doing a stool study. And I'm sure you know, like some of the CPL lab, quest lab core, you know, I mean they're woefully very underreport of actually what's in the microbiome. So I think things get missed. Mm-hmm. <affirmative>. Um, so going to look for infection is sometimes feels, uh, it feels, it feels exhausting, you know, to everyone.
There's several mediums and the testing is not perfect. And so I was actually just wondering, um, it sounds like you do some blood testing and, and that's, I think the question is like, is there testing you do in all of your clients? I'm sure it depends a little bit on budget. Um, because you can, what you're, what you've said in different words a few times is like you can learn as much from symptoms as you can from testing, which I feel often <laugh>. Um, cuz testing's not perfect. Right. But testing is partly there for the validation. So it sounds like you're probably doing some blood testing maybe for heavy metals, maybe for significant infectious problems. Any of the Lyme co-infections, mycoplasm cetera. Is that pretty, pretty standard to those that blood work? And then how are you also doing blood work for nutrients? Do you kind of just do some basic things there and we can get into supplementation in a little bit too, but I think testing first, um, is there stuff you usually always do or it just kind of depends?
Yeah, well first I let the history guide me mm-hmm. <affirmative> and then I know, you know, if I'm gonna have a kid that is gonna be, you know, parents are like, I'll take him to the lab as many times as you want me to, then I'm gonna have a pretty good list. If, if it's like we're gonna get a needle in this kid one time and it's gonna be when we put him to sleep for another procedure, then I'm, you know, there's only so much blood you can take from a child depending on their size. Things that are classic that everyone should do looking for strep is anti strully and anti-d b antibody tits. So that's ASSO and DNAs and all of the mainstream labs do that. I often then put my top tier infections that I look for. Um, if it's an older kid, say they're 12, I'll look at mycoplasma Epstein bar, I'll look at Varicella, I'll look.
Um, influenza A and B titers. You'd be surprised how much active IgM influenza you'll see in non-influenza seasons. There's no IgM for covid yet. Um, but I think's an interesting one if somebody really flared after the infection to Covid. Um, so I'll do that. And I always, I mean on all my patients I have what I call a Neuronutrition associates panel and I check homocystine, I check all the thyroid markers, I check b12, I check folate, which we can talk about those markers cuz they're, they're, they can be, they can be tricky. Um, I check iron on every kid. I check their, you know, liver enzymes. They're a CBC just to make sure there's no types of anemia or I mean certainly if your white blood cell count is elevated, that's a problem. Um, you know, I took vitamin D on everyone and then there are some neuroinflammation markers that you can do in pains that are ing.
Yeah you can do a tumor necrosis factor alpha. Um, you can do that. You can do an interleukin six. And actually, um, I've never checked, I don't believe you can do a Manus binding lectin, but there are some genes that are correlated with having pans as well that makes you more susceptibles to have to having pans and Manus binding lectin is one of 'em. Um, but some of the TNF outfit absolutely, um, you're more likely to have an encephalopathy if you have a mutation in that gene. Uh, and then I'll check some inflammation, like a high sensitive creactive protein, um, you know, to kind of see where that inflammation is. But there are some, you can do a TGF beta one mm-hmm. <affirmative>, which is, you know, looking to see if this kid is, has a lot of mold exposure. Sometimes you'll see that high with mold. So there are some of those, but I've mentioned a lot and that's probably 12 or 14 tubes of blood.
Yeah, that is a lot. I was wondering, you know, since we're looking at brain inflammation, what opportunities there were besides doing some kind of scan, which I don't know if that would be that really helpful anyway. Um, what information you could collect to understand if there was encephalitis?
Yeah, I think, you know, I think the Amman clinic does a good job doing spec scans, but my, my the limitations with that Oh yeah. Is I can't order those, you
Know, they're very expensive. Right.
And they're very expensive. Yeah, they're very, I mean, expensive.
You don't wanna spend $5,000 to find out if you have pan. I mean you would if, if it made a difference or whatever. But it's like not the most ideal first step potentially maybe, right.
So Yes, yes, exactly. And then nutrient levels, I mean the big ones and kids are, you know, iron deficiency is just kind of across the board with so many kids. Um, iron, magnesium, zinc, and then just if they have a high homocysteine, are they deficient in riboflavin, b6, b12, um, folate, but folate, it's tricky. How do you, how do you test for folate? Do you test for folate?
I used to do comprehensive micronutrient testing. You know, as you know, there's very substandard comprehensive micronutrient testing on the market and the functional world, it's very poor. But years ago when I started my private practice, I was using specter cell because it was covered by insurance. It was lovely. I got good results with it. Now I don't for a lot of reasons, um, let's just call it streamlining <laugh>, we'll call it streamlining the main reason now I look at, um, more mineral analysis, which we could talk about if you want at some point. But I will occasionally pull some of those blood labs as well, like what we can use. But you brought up, hey, B12 and folate are kind of interesting when blood mm-hmm. <affirmative>. So I don't think ab, I don't think of folate as like a major, um, make it or break it. I have interesting feelings of like where I am with iron that have been changing over the last couple of years, but B12 and FOL eight, I don't know what you're gonna say about folate, but my complaint with B12 is like the reference drain just keeps dropping. And then there's the deeper version of like, well why would you even have a B12 deficiency? Which, I mean if you're not eating very much, that would be one. Not digesting well that would be another. But from a blood testing perspective, what is your beef with um, what's, what are some of your beefs with the folate blood testing?
Well first of all, folate, you're doing folic acid, right? So we're not looking at folic acid, we're not looking at methylated folate. Mm-hmm. <affirmative>. And you know, I mean if it's high, is it just cuz you can't methylate it and you're accumulating what you're getting in your diet so high can really be low. And then if you get a red blood cell folate, they often, the lab people often don't know the right tube to use then they're like, they don't do it. Um, that's a beef. But, um, I like looking at homocystine and older kids and younger kids. Home assisting is almost always gonna be low, but you need B12 and folate to methylate. And so b12, B12 is even more complex than that because high B12 in the serum can actually mean a deficiency inside of the, the nervous system. Mm-hmm. <affirmative>, you have your transcobalamine genes, you have your gastric intrinsic factor. Um, so absorption can be really, really poor and you just have B12 floating around in your blood. So yeah, it looks high, but it's not, it's, it's not functional. Mm-hmm. <affirmative>. Um, and then of course every neuro, well, not every, I'm not gonna say every, but most neurologist not, oh my gosh, your B12 is so high, you, you gotta get off that b12 mm-hmm. <affirmative>. It's like, oh no, no, no, no. In fact, some people need B12 injections with high serum b12 mm-hmm. <affirmative>, you know, um, do you check methyl acids?
I don't usually do MMA in blood work, but if I have organic acid testing, it's in that
Mm-hmm. <affirmative>. So Yeah, I like that. And organic acid testing is so PD friendly. Mm-hmm. <affirmative>, all you can do is wake up and peeing into a cup. Okay. Yeah,
Actually I was thinking that when we were talking about blood labs, because sometimes that's a bit of an issue too with pediatric ranges and how the lab spits it out. And I'm sure you have your own custom panel that potentially accounts for that. But that's the tricky part with kids is like, well it depends on if your kid is one year old or five years old or 17 years old is really gonna vary potentially how you read something
Mm-hmm. <affirmative> mm-hmm <affirmative>. And there's, there's different common deficiencies in all of those ages, you know, so what you're gonna see in, you know, a picky three year old you might not see in a 13 year old, but, you know, it just changes changes via the age. But I love organic acids. I think, you know, I think every child on this planet deserves an organic acids test, gives you such great information and it's so, it's so low stress on them to be able to gets
Right. For sure. I agree. Okay, so we've covered a lot so far and I wanna make sure we give full attention to all the things here. So we talked about presentation when child was first infected. I mean, one thing I'm a little stuck on is, has PDA's always been a thing that we didn't know it was there before the nineties? Or is this like a, a super bug situation or like, is it an awareness thing where we're more aware, you know, has it always been there and we didn't know it? That's, I'm kind of stuck on that one. <laugh>.
Well I think it, I think it parallels how autism is rising. Honestly. I think it's the total toxic burden of our children in our, in our planet. Because again, I mean yes there's usually an infection that's a trigger and inflammatory thing, but it's immune system dysregulation. I mean, if we really wanna come down to it, cause why don't all kids that get strep get pandas mm-hmm. <affirmative>. Well, some have higher body burdens and some have immune systems that are dysregulated because of the burden. And over time where we are in this time and space and you know, we're just more toxic mm-hmm. <affirmative> and that might be a reductionist way of looking at it, but I really honestly think that's why, um, gotta oversimplify, we're seeing
Topics, we gotta oversimplify tough topics and I know I, everyone talks about the train and we gotta improve the train and it's like, you know, friends, I'm still looking at what that looks like, but like I wrote terrain total talks burden. Right. And I would say for sure, and people want, it doesn't fit in one sentence. There's a lot of pieces to that potentially. And it's not right or wrong, it's just like I look at that as opportunity. It's just a lot of opportunity to improve
Mm-hmm. <affirmative>. But I don't think there's a super bug to answer that question. I don't think there's like a super bug.
We, this is an antibiotic resistance where like staff has become more, more persistent or, or harder to kill or something like that.
No, I think the host has poor, um, I think poor resilience because of the terrain that we have our kids in. And I think that as women have more children over time, I mean, I, I don't know how much you guys have explored this in the podcast, but just being able to do that detox before you get pregnant is, is more important now than ever before. You know, and
Not passing it all down.
That's a good point. Absolutely. I never, um, I haven't covered that a lot. And it's an interesting point. It's a great point. It's a good point for sure. I like it. All right. We talked about, did we talk about the treatment? I mean you gave me a lot of treatment things. I know we wanna talk a little bit more about nutrition and supplements a little bit. But let me run through these and let's see if we, um, rule some of these questions out because this is gonna be so valuable to parents who are wondering what happened to my child. So first of all, not everyone's in Austin. So how does the PCP rule out strep? I mean, you can tell me if you feel like you've covered that already, but briefly, like if you're kind of coming in and you're like, Hey, can you do some strep checks? What would you, what, how would you empower a parent to say, stand up for myself and, and try to get some testing?
Sure. Um, they gotta swab the throat and do a rapid and then culture it. So they have to send it for culture so you can grow out strap then, you know, um, if there's any type of rash they gotta, you know, a little red ring around an anus. You've gotta do a rapid and a culture on that as well. And then if you do blood work, you do an ASO and DS and that's the blood work that shows if you have active strep in your, in your body. And here's the caveat, ASO and DDS are always gonna be high post strep infection, but they should rise and they should fall. So if you have a positive ASSO but your known strep infection was last year, you know, that's a positive strep. And then here's the fourth caveat. My kid is presenting with classic pandas pan symptoms and a good resource for your parents to go to is the pandas physician network.
They have all of the algorithms of like, if this, then that, you know, so that, that's a real strict kind of criteria way to look at things. But if they're classically presenting, you do an empiric course of antibiotics, you know, you do an empiric course and you know, after a week, after a couple of days, if they get better, it's kind of diagnostic. So, you know, the, the, the, the treatment guideline has put that kid on an antibiotic for 30 days, not 10, you know, and then I think about things like, oh, they're gonna have yeast overgrowth and I really hope that they're supplementing with sacra BDI and probiotics and you know, and then changing their toothbrush like so they don't reinfect themselves if they had strep in the throat, good call. Um, and then checking the siblings check, checking the parents, um, to make sure it's just not circulating around their community. Um, and kids don't get reinfected over and over again. And then, you know what, if you have chronic strep, you need to go to the ear, nose and throat doctor you do. Um, you know, cuz you, you just, it's just, you just do. And people that have tonsil or hypertrophy and chronic strep probably have some disordered sleep too, cuz they probably have a little bit of apnea and obstruction. So in a good ENT evaluation, it, it could be helpful too.
Yeah. And at first you're not successful at the first one. Maybe try another one that happens too, where they're like, there's nothing wrong. Yeah. It's okay to go to another one if it, if
It, yeah, definitely. I mean I encourage my parents always like, God gives you intuition about your own child when you, when you don't listen to that intuition and you know that something in your gut is wrong, I mean you just, you keep looking for the answer for it. Because as parents, when we, when we ignore our gut, I, I mean it's not good. It almost always is the wrong answer to ignore your gut,
We'll come back and bite you in their old rump at some point. So
Uhhuh, absolutely. I
Have a basic question for someone listening who's like, should I be stressed out about my kid having a stress a a sore throat and I didn't go get a stress swab. Should I be afraid or fearful that my kid could develop this from an untreated strep infection? And I thought that the body was gonna heal a, I mean strep gets kind of tricky cuz strep is a bad infection and so that kind of like, it definitely toes the line on, you know, let's go back to the beginning of your career where these parents wanted to know how to support their child naturally not take antibiotics. And here we are talking about treatment guidelines of 30 days of antibiotics or 10 days and all the caveats and how do you support through that right. For a necessary antibiotic course. And so what would you say to that parent who's like, well should I be worried? How should I worry or how should I navigate sore throats and strep going around and things like that in my day to day life?
That's a great question. And pharyngitis is the medical term for a sore throat. And pharyngitis can help him from postnasal drip, it can happen from having a virus, it can happen from a multitude of reasons. Um, but if your kid has a persistent sore throat, here's some other symptoms of strep, vomiting, stomach aches, headaches, rash, O C D or ticking. Okay, any of those, I would go get your kid strept, you know, and if the rapid comes back negative, you beg them to send the culture because I mean I just think that's standard of care, good medicine, send the culture, see if it comes up and here's the rub. I I, people don't come to me because they want me to put them on a lot of psych drugs and a lot of medication. They don't. They come to me cuz they're like, Emily, what can we do that's natural?
I only went natural treat treatments and, and I love natural things. They have high, you know, potential benefit and low side effect risk for the most part. Mm-hmm <affirmative>, you don't mess around with strep, you treat it beta hemolytic str, you just treat it, it can cause cardiac issues. It can just have a huge delete effect on your health. You just treat strep and guess what? Strep is never going away in our society. It lives on inanimate objects. Our kids pass it around, it's here to stay. And if you just, if you have a kid that has symptoms, go get slobbed. If they're fine now they're asymptomatic, they don't have any of these other things, I wouldn't borrow trouble and worry about the what ifs because that's a slippery slip when you're a parent, you're worrying about strep and then you're worrying about when they first drive and then you're worrying about, you know, how what college they're gonna get into. I mean we can really bully ourselves as parents to ourselves with the what if is gonna happen. But if there's reasonable suspicion, it's very easy to get a kid swabbed. Um, your insurance should pay for it and every doc in the box around the corner should be doing it.
Yeah. Thanks for uh, saying don't borrow trouble. Haven't heard that expression before.
Yeah. Well I have to remind myself of that. Believe me.
<laugh> so. Well we all do. So we talked a little bit about some of the nutrients and some of the questions I have here are supplements helping with prevention overall. So what do you wanna say about supplementation in kids? Is there stuff that you think is useful for all kids that are dealing with this? Or what do you have to say about that in general?
Yeah, I think there are some things that are very science based that are nutraceuticals that can help with some of these symptoms of pandas pants. So let's just take OCD for example. Um, high doses of an ACETOL can be amazing. It can be, it's a pseudo B vitamin. You gotta give them enough, you know, like at least four grand. So it usually comes in a powder. Um, and it can increase your serotonin sensitivity and acetol can be really nice. Even an os high doses can help you clear your bowels. So you, that's the only way you know, you've given too much if you have a little diarrhea. Um, magnesium three and eight can be really important for decreasing the glutaminergic load in the brain. So GABA is really inhibitory and glutamate is very excitatory. So magnesium three and eight crosses it through the blood brain barrier and can lower that load.
Um, so it can be really helpful for ticks for O C D for anxiety, for sleep. Um, another one is b6. B6 helps you make gaba. So again, just trying to hit those GABA receptors, making 'em sense more sensitive with some lanning, um, making sure there's enough B6 in the symptoms. So those are all kind of calming supplements that you can use that can be really helpful. Um, so that's more of if someone is like in an acute flare. Now don't forget about your nutraceuticals that lower inflammation because part of the treatment for pans too that we didn't talk about and I mean I sound like just like a medicine pusher and I promise you I'm not,
I think it's all
Okay. I mean, steroids are something that we'll do for kids that are in acute flares too. But thankfully nature has given us some steroid, like nutraceutical compounds, you know, things beautifully like PO mite or p a omegas resolve specialized, um, pro resolving mediators or spms. Um, so you know, doing that and even sometimes parents will give over the counter ibuprofen, um, a couple of times a day for like three to five days to really down regulate the inflammation. Um, but the natural things should be on board and omegas matter. The dose matters on omegas. Yeah. Like you're just not gonna get 500 milligrams and have an anti-inflammatory effect. Yeah. Um, very high. But if you get four grams, yeah, you gotta get very high. And again, you're gonna clear the bowels if it's too much. Um, but you know, other than if you eliminate
The toxic burden if
<laugh> Yeah, there you go. There you go. I mean, and that's part of it, right? Make sure your kids are pooping because that's part of their detox pathways. And God, there's so many kids that are constipated mm-hmm. <affirmative>. Um, so
Of em one, ask your child if they poop today, just
So I know
Yes. Doesn't hurt.
Yes. Or go look at it, you know, what does it look like? Were they little round balls that were floating on top or did you have a nice slippery wet snake in the, you know, in the bo in the bottom? So yeah, I mean pooping, ping, sweating, just the basics of detox, but you gotta be a good eater to poop well too. So it's just this vicious cycle of all of it coming together. Yeah. Um,
There's a lot of emotions here, right? Cause we've got a lot of neuro anxiety, OCD behavior like and, and maybe some real emotional outbursts and then you've got the, I just want this kid to eat. And it's like kind of a struggle there a little bit too. Cause it's those
Behaviors. Hundred percent percent
Your advice to parents for those, both of those huge balls of problems right there. Huge baskets of problems. It's not very simple. Yeah. They're just really hard topics.
No, no, they're very, very hard topics. I mean, I, I try to advise all my parents is just, you gotta take the emotion as much as you can out of food just as much as you can. And sometimes it's not the time to do a, you know, somebody that's in a pans flare is like, oh, let's look at your food sensitivity. It's probably not a great idea right now. Mm-hmm. <affirmative>, you know, but if they have a lot of inflammation from food they're putting in your gut, you also want to be aware of that, you know? Um, so picking eating is, is, is interesting, especially in this position. You just can't, you, you are not responsible for what your kid eats. You're responsible for what you provide them to eat. And so if you kind of take a step back on that and just try to, you know, do what you know is best for your child and then just if they don't wanna eat, you can't force 'em. There's just no, I mean there, I don't even like the one bite rule, you know, it's like, here, put it on their plate. Let 'em just tolerate seeing it, you know? Um, it depends on the severity of, of picking this. I'm sure that you've dealt with like varying like we'll eat one food or I, I literally had a patient today tell me that their kid is so picky he's asked for a feeding tube cuz he doesn't wanna put food in his mouth at all. Like at all.
Yeah. There's always something new. It's like you think you've seen everything and then something like that Yeah. Pops up and it's like, yeah, there's not, there's not a script for this. I'm sorry parent. So what's our best case scenario here?
So, no, and that kid has extremely picky eating. Uh, he has serious O c D, um, and he has a long psych history of parents being afraid to even keep him in the house for their safety. And nobody's ever checked his strep titers ever. I'm like, well this could be nothing, but I think we should do an immunological evaluation on him just to be sure because this kid's about to be shipped off, you know, to live somewhere else. He, he literally is that aggressive that he can't stay in the home anymore. So I want to offer them a different kind of approach to looking at maybe what is some of the contributing factors to where their child is.
What age thing for him or is there a common age for pandas?
I think, I think the most common age would be like, you know, first to third grade. Okay. Just curious. I think that would be the most common age. It can hit it any time. Like you said, there have been some reports of adults. It's way more rare or at least rare today. Um, but you see it in like, you know, elementary school is about when you see it. My youngest patient I've ever had was three and classic pandas. They were living in a mold infested house. Mm-hmm. <affirmative>. Um, and that was, that was definitely their trigger and mold can, you know, do all kinds of awful things to your immune system.
Yeah, it's a blast. Can't un see it. <laugh>
In ace cystine. I didn't mention that. That's probably one of my favorite things to use. Um, also great for clearing the glutamate load. Plus it will, you know, increase glutathione. It helps with your antioxidant status. But NA has some beautiful, very high quality research around helping with ocd. Um, and I use, I mean ocd NA is probably one of the, the number one go-tos that I put kids on just because of its efficacy. And not everybody can, you know, you, you will also increase their antioxidant status. You're also gonna protect their liver, especially if mom's giving them Tylenol or any, you know, NSAIDs for inflammation. So NA is like, I love nac. It's probably one of my favorite.
Awesome. Thanks. For sharing that on that note of nutrients, uh, when you were kind of like trying to pick and choose some of these, I'm guessing you struggled a little bit. It's always seems like when you have all these different things you wanna put in this perfect compound, it's a struggle. And so I know you developed a supplement line, I'm guessing, to serve your own clients, which is usually it's like, yeah, I can't find it and I don't wanna give people nine things. I want it all to be in like one or two things.
Yes. And recently, so we launched about four months ago, but I've been using these, these compounds in patients. I love to do custom compounding for patients and put kind of all of what they need in one thing. Um, but recently it's like, oh, well you're an intention kid and oh, oh yeah, you're deficient, you're magnesium deficient, you need a support methylation, my product actually fits you perfectly. You know, but I created them based on my experience with these kids and seeing these kids and, and you do tend to grab for the same things over and over and over again. Nothing's ever a one size fits all, but like our calming support has all of that. You know, a Nool Mag three and eight, um, Aine, passion flour, it did put a little bit of coconut sugar. I'm not sure if you're gonna be mad at me for that, but I care at all. It helps. It helps for palatability. Mm-hmm. <affirmative>, you know, and it's pretty neutrally tasted some kids, I mean, you know, if they're picky, I mean you can suggest things all day long mm-hmm. <affirmative>, but if they can't swallow a capsule or they don't like the way it tastes, you know, you're just not gonna get it.
You know, you, you make a beautiful point that that's a huge issue for kids is like, what will a kid accept? I mean that's like part part of pediatrics is you're working with a kid and a parent and then you gotta figure out what a kid will tolerate and then you gotta figure it out for what size and age they are. And just all those little A keeps it a little interesting.
Mm-hmm. <affirmative> keeps it interesting for sure. And let's just say that, I mean, like for instance with, I believe it's with Passion Flowers only been, um, studied down to age six. So that's my reference range on that product cuz it, I'm not gonna dose something that hasn't been studied in that age population. Mm-hmm <affirmative>. Um, and that's hard. There's a, it's not, you know, there's not information out there like there are in adult dosages. So you do, I mean you gotta kind of approximate and there's sometimes where it's really clear in the literature or you can look on the NIH office of dietary supplements and it tells you exactly. But then there's sometimes, you know, especially on some of these botanicals or amino acids where you're like, well can I safely use this in a two year old? I dunno. Um, so you gotta go looking, but there's information on some of them. Some of them you're not gonna find it.
Yeah, for sure. Well, we covered a lot. I feel like we could have kept talking for a long time. If someone is listening to this and it kind of feels like you're tugging on all their heart strings or their mind is kind of blown. Um, and I'll ask you here where people can find you, but what do you wanna tell a parent that's listening to this and feeling just really enlightened and inspired?
Hmm. Just please listen to your gut. Know that sometimes your child's bad behavior or behavior that you know is concerning for you and them and everyone else is really has an ideological basis. And we can't rule that out, you know, without really doing a thorough assessment on it. You know, there's depression that runs in families, certainly there's anxiety, certainly we all have genes that set us up for neuropsychiatric stuff. But why at six, why at eight? Why at eight after three months that they weren't like, what was the trigger? And don't rule out that there can be something that's upregulating their immune system that's affecting the way that their brain is functioning. Um, and I think that's, that can be a relief sometimes when you, when you find it and it's always not that, you know, somebody's bullying them school or there was some other traumatic trigger. I mean, I think you should ask that question too, of course, but I just wanna, you know, even just hearing and being aware puts a different awareness on your radar and, and listen to your mama gut or your daddy gut. Listen to your gut on, on what's going on with your kid. And usually when you're, you're being, you're honoring yourself and it's gonna sense you on the right path to find the right people to help your child.
Hmm. This is a very valuable interview for the people who need it. Where can people find you online?
So there they can find me a couple of places. They can find firstname.lastname@example.org. That's our, our line of new supplements we came out with about four months ago. But you can also find me on neuro nutrition associates.com. Um, that's our practice that, um, I've had for, for, for quite a, quite a bit of time now. So you can find me there as well. I'm also in Instagram. Um, I try to, uh, make it fun and exciting and post a lot of, you know, new things when they're coming up for kids and families. And, um, other than that, you know, I don't know where else you can find
Me. That's enough places on Instagram. Are you neuronutrition?
I am Neuronutrition. Mm-hmm.
<affirmative>. Perfect. Well thank you so much for coming on today and we'll see you back soon for talking about autism.