Podcast: Body Talk Radio – PANS and PANDAS

Dr. Scott recently sat down on Body Talk Radio to talk about PANS (pediatric acute-onset neuropsychiatric syndrome) and PANDAS (pediatric autoimmune neuropsychiatric disorders associated with strep infection). Learn how he identifies and treats environmental toxicities, chronic infections, and other complex medical conditions below!

Full transcript of podcast below.

0:14

You’re listening to Body Talk Healthy Living Sonoma style. I’m Heather Morgan nutrition and healthy living coach. And I invite you to stay tuned for the next hour, get educated, get inspired, and become a healthier you. Alright, everyone, we are back. It is a jam-packed hour today. It’s Friday. And I am so glad you joined me today, we’ve got lots of good stuff going on. Wasn’t Kerry amazing? And if you know of a woman out there that could use some total girlfriend Time, time for herself time to focus on how to grow as a person and how to really just love where she’s at and love where she’s going and plan and strategize that believe events going to be amazing. And I’m going to go ahead and put that link for you on our Facebook page over at Body Talk radio.com. And I’ve I’m a total believer in personal development as humans, we’re here on this planet for a limited time. And when you’re here, I always say like you’re either growing, or you’re not you’re contributing or you’re not right like it’s a give and take. There’s positive and negative everywhere you look with how you think, with your interactions. And so you know, I always try to think, Okay, how am I moving forward in my personal development moving forward in life in the best way possible? Am I really stretching and growing to become my personal best, and everybody’s personal best is different, right? For me, that has looked quite different throughout the different phases of my life. And during the time when I was a student, you know, when I was younger, that was my focus. And that’s how I was growing. But we’re going to switch gears now. And we’ve got Dr. Scott and tone coming on board. So we are going to take our next call. Hello, Dr. Scott, you are on the air.

2:10

Thank you very much. Happy to be here. Hey, thank you so much for joining us. We’ve got a lot of listeners out there with lots of very curious and lots of questions about this whole topic of PANS and PANDAS. And it’s kind of new. I don’t think it’s new. But I think the awareness around it is fairly new. And what you’re doing as a pioneer in this whole area is cutting edge and people are coming out of the woodwork to understand this better. So I really appreciate you coming on joining us today and sharing your expertise on PANS and PANDAS. And I want to just sort of start from the very, very basics, okay, because there are many parents that listen to this show that have children that may be expressing some of these signs and symptoms and have no clue that this is what’s going on. So can we start with a definition of what is PANS and PANDAS? Sure. So I would have to say sort of as a disclaimer that although we work with this every day, and we’ve seen quite a few patients, we’re really trying to get the message out there. There’s a lot of others that we’ve kind of built on. So PANDAS is a pediatric autoimmune neuropsychiatric disorder associated with strep infections. Strep is a bacteria right. In the 80s. Susan, Dr. Susan Swedo, the National Institute of Health started studying this in food and found that children after a strep infection, like strep throat, typically, right or an upper respiratory infection, would develop, some children would develop sudden onset severe, either OCD, obsessive-compulsive this, or they would develop restrictive eating.

3:52

And then she also defines that a little bit better than that, in addition to those things, these kids are typically between the age of three and about puberty.

4:07

But they also developed some additional things they developed loss of bladder control, at times poor school performance, a lot of these children became very defiant. And they also noticed tics like facial tics or the arms or the legs or net. And so this was sort of what propelled us and a lot of these children also would develop a really sudden sensory integration issue. So they’d kind of wake up out of bed one day and not want to put their socks on and go to school and it looks odd, it looks like a behavioral issue or defiance. And a lot of times its just anxiety. So these children also are known to develop anxiety and depression. Sometimes it can be severe children have been known to become suicidal. Oh, yeah. So it can be really significant. So then a few years later, after defining PANDAS and coming up with some treatment protocols, both to treat the infection and then to treat some of the symptoms and the inflammation in the brain.

5:00

We then started recognizing that in some of these children, you could never find strep but you found other bacterial infections like mycoplasma bug that causes common colds or respiratory pneumonia. Yep. And we also found that there’s a link with post influenza. Also, varicella, which is chickenpox. Sometimes children would get it after chickenpox. And indeed, there’s a proposed link to Lyme. And that’s something we’ve seen in our practice, as Lyme disease and other tick-borne infections, like Bartonella will sometimes cause this syndrome, there are some toxins as well. So that syndrome when it’s not associated with strep infections, they termed pediatric acute-onset neuropsychiatric syndrome. So that’s sort of the term I use as globally. Thanks. Sure. Because it encompasses PANDAS, plus all of these other things we see you like to cast a wide net, just kind of bring it together for the audience. Children are obviously we’ve got epigenetics here, right? And so is this sort of a situation where this infection, whatever it may have been, right? It sort of triggers these symptoms or a sort of reaction, but it’s Nervous System-related and it manifests in these ways that you’re talking about, be it the tics, those OCD that the behavioral, right? Sure, it seems to be. So the mechanism behind it, and they found is that what’s happening is these children get an infection. And what your immune system is supposed to do is make an antibody to protein to fight that infection, right. And what’s happening in these kids is that those proteins, those antibodies are then crossing their blood-brain barrier, getting into their brain nervous system, in there somehow developing this autoimmune reaction attacking parts of the brain, which is causing all of the signs and symptoms. So you mentioned epigenetics, we do believe there’s probably a genetic susceptibility, because strep infections are very common, as are some of these other infections. But it’s not a huge number, at least that we know of, that we’re seeing. So and I have seen a few cases where siblings have had this issue, so we believe they’re probably genetically susceptible individuals. And then actually, if you add on top of that some of the toxins, household toxins, and mycotoxins from mold exposure, tend to exactly press the immune system and then make it likely to have this weird abnormal reaction. Absolutely. And these are the things that people don’t think about. So like mold, for example. I mean, my family has lived through all of this, by the way, we’ve lived through it all with our children and ourselves. Mold in our home, had to move out the whole thing, get rid of everything. As a result, Lyme and co-infections and looking back, realize that’s what was going on with my kids. It’s so like, it’s so crystal clear. Now, the whole autoimmune thing, we’re just one family. But there are so many people out there that have children that maybe have these infections, and then, you know, parents that are struggling, because their child is misbehaving and their child is just acting, not typical. Right? And or having these outbursts and things like that, but they don’t think to look at Could it be related to that illness that they had or something in the environment? So what would you say to parents to sort of be on the lookout for this condition? And what are the things that they need to look for, and then we’ll talk about resources. So I would say that the chief thing, piece of advice I always have for parents is you know, your child best. And you need to be really diligent. And if you see a doctor or some other health care clinician, and they’re giving you answers that don’t make sense, then you need to see someone else. And for something like this, it’s important to see someone who has experience with PANS or PANDAS. I mean, I can tell you, when my daughter had PANDAS, about six or seven years ago, I didn’t know what it was. And at the time, I was already getting into functional and Integrative Medicine. So for doctors who have not seen this, it can look like a lot of things. And indeed, when it first started out, a lot of it looked like the science to me with my daughter, when in actuality It was probably anxiety, and OCD and not wanting to do the things that I was telling her to do because she thought they would hurt her. So, and that happens in school a lot where children are not wanting to do a certain thing or sit in a certain seat or do something. And so it gets put through the lens of behavior.

9:30

You know that?

9:32

Yes, we had the same exact thing in our house and we struggled for years and because we just didn’t realize what was the root of what was really going on. So there are parents out there whose children are going through many of the similar things that we talked about. And if a parent has a child let’s just say that’s been diagnosed with ADD or OCD or behavioral issues, outbursts, right because non-typical outbursts are part of this, right?

10:00

Correct. Yes. So sudden, aggressive behaviors, one of the stories that commonly happens and it’s not as if these parents have talked to each other, a lot of times they’re coming in, and they don’t have any idea what the diagnosis is because we tend to see people, both adults and children with mystery diagnosis and, and one of the common behaviors we see in children is they’ll unbuckle your seatbelt, open the door and try and jump out of the car. Fortunately, I haven’t had any of that have been successful. Yes, but it’s just so a typical, and one of the forms of OCD that we see a lot too, is thoughts of harming. Sure. In other words, they will say, I was walking through the kitchen and I saw a knife and I thought about stabbing my brother. Now these are children that would one of those things I’m thankful for that we don’t see these completed acts. But these are typically children that are super caring, super empathetic, oh, yeah, and empathic, and they have this thought in their mind over and over again. So but you know, to to look at your child and say, well, they may have a learning deficit, or they may have some ADHD tendencies, or some anxiety. There’s really no mistaking PANS or PANDAS, because the onset is super sudden, typically within three or four weeks, it can also come and go over time. So you can have what’s called a flare. And then the children may return to baseline, and then have another flare that happened with my daughter, she initially started doing some lining things up type of things, and praying really long before meals at the table. Yeah. And then that went away. And she was fine for a few months. And then things really reared their heads, and she started washing her hands till they bled and having a lot of the other behaviors. So what’s fascinating, though, about this, especially about PANS in the last few years, what we’ve discovered is when you look at a larger number of these children, there are some children that you can’t find the sudden onset, or you can’t find the infection that happened right before they got sick. And you know, everybody’s busy. I mean, I’ve children myself, and so these things, sometimes in maybe 30 to 40% of the time, you might not have that immediate, like it was overnight, or it was within a week. So sometimes there’s times and in fact, the folks that write a lot of the PANDAS, literature and PANS literature at the National Institutes of Health helps in something interesting, they said some adults who had struggle with some of these things may have had their onset in childhood, and it just wasn’t recognized. Absolutely. And I think that may even be more common than we think, especially when they were young. And they’re just having, you know, a crying fit, and they really aren’t speaking and communicating as well, at that point. So I think that something you said is really important to circle back on. And that is, this is acute onset. So this is something that sort of comes out of the blue, and you look at it, and you say this is not my child, right? So parents will know, like, it’s so if this has happened to anyone out there, or someone you know where the child is, quote, unquote, developing and coming along, quite I hate the word normal, but you know, typically, and then all of a sudden, especially after someone after an illness of some sort, they just have this complete turnaround in behavior. And in, you know, like a meltdown break down to the point where you’re like, this is not my child, and I don’t know what’s going on. And sometimes it’s so severe that people are questioning is this mental onset of mental illness? It’s very hard. When my daughter got sick, she had been at summer camp in Michigan, and where mine is really endemic, and came back and then it was a month or two later, and she started also having some other obsessions and obsessive thoughts. And our first thought was that something happened at camp, right, someone right or two or, you know, violent you in some way. And so it can really the thing about PANS and PANDAS are, it’s rare that you would just get like a single isolated symptom like only OCD or only restrictive eating, if you dig a little bit more. It’s this whole constellation. So to make the diagnosis, typically, it would require a child between the ages of three and puberty,

13:59

that child would either have acute onset OCD or restrictive eating, what restrictive eating looks like is not just sort of a finicky eater, but children that are afraid to swallow or suddenly can’t tolerate certain textures, crunchy foods, yeah, things like that. And so they can actually, that’s my least favorite kind to treat. Because they can actually lose weight. Some of these children end up hospitalized with you know, feeding tube, and it’s, it can be quite dramatic until they get definitive treatment. But once you get one of those two things, and then there are some minor criteria. So technically, to meet the book definition, you would need either OCD or restricted eating and then plus at least two additional these additional symptoms. So anxiety, depression is one category. Another is decreased school performance. Another is somatic signs and symptoms. Those are things like bedwetting, loss of bladder control. The next would be sensory issues. So children that can’t tolerate certain fabrics will wear pants, things and some of that goes with childhood.

15:00

Yeah, but to an extreme degree. And so these are kind of four of the categories, there are a few more things we look for. And then the other suggestive evidence. Interestingly, about 90% of these kids will have a first-degree family member with either psychiatric diagnosis and/or autoimmune diagnosis. And when we run autoimmune markers, like an anti-nuclear antibody and ANA, right, that’s positive and about 40 to 50% of the children in our practice.

15:26

And, no, I agree in that that whole autoimmune piece is also really important, because that’s something that doesn’t always get detected by the health care clinicians. They’re not looking for autoimmune stuff. And kids, usually that’s not where they’re going. So I think that that’s super, super important to understand. And yes, that genetic piece, or someone, you know, in their immediate family that has the mental health issues, I mean, it all sort of this clustering effect. And so, therefore, there are many practitioners out there who aren’t well versed in this, but there are many, many, many children out there that are experiencing this. So what is being done today? I know you’re you have a big effort out there in this regard. But the doctors and the physicians coming on board with this? And are the support mechanisms and the diagnoses in place? Or is this something that’s still really just emerging? So it’s getting better? This became sort of a controversial diagnosis when it first came out because people said, "Look, a lot of kids get strep. Why don’t they all get this?" And it’s sort of a similar story you hear and people talk about mold, you’ll have a public building a library, a school full of mold, and only two or three people are devastatingly sick, the rest of the people seem fine. And so it leads people to say, "Well, those people are just a problem, or they’re faking or so there was a lot of issues initially," but more and more people around the globe are writing about this. And professional medical journals, the American Academy of Pediatrics, actually had a booth just at their recent conference from the PANDAS physician network, which does a lot of educating people. So yes, it’s coming forward. There’s still some resistance here in there. I know there’s a children’s hospital and in one of the surrounding states to us, and they had sent a child that sort of escaping, the primary care doctor had sent the child to this Children’s Hospital in a big city and said, Does this child have PANDAS, and they sort of derided the physician and wrote some things in the visit notes like, you know, another case of fake PANDAS disproven. So they diagnosed this child with Tourette Syndrome, said there was nothing no medication with this severity of illness that would help, and sent them out. And then they found us drove here from that state. And I treated the child the child’s symptoms ultimately went away when he got appropriate treatment. And so we still see that it’s getting better. We have some legislative things, as you know, kind of going forward to try and get help for these families. And you know, a lot of the literature that came out from the National Institutes of Health and from Harvard and Yale and Columbia, especially in Stanford has had a big effort. They have a great PANS clinic at Stanford, but a lot of that focuses on infections, microbiology, neuroinflammation, writing the immune system, and all those things are super important. But one of the things that’s been missing has been support. I mean, it’s almost super hard on siblings, and parents, especially moms. There’s a huge, we had one of my patients wrote a great blog under two years ago. And it was about guilt. Because one of the things I commonly will say to these parents, usually the moms, when they come in, they’ll say, oh, maybe it’s because I missed a prenatal vitamin, or, you know, I know I’m a terrible Mom, I don’t always give them lunch that’s gluten-free or something. And so that guilt piece is huge. And then if you go to see a physician, outside of our practice, and they say, 58% of these parents report to a doctor, somewhere along the line, told them they were crazy or acted like there was nothing wrong. I had a child about six months ago, and they told the parents that all these terrible symptoms were because there was stress in their marriage. So talk about a guilt trip and delaying you know, delaying definitive care, right. And the studies show that the quicker you treat this, the less long-lasting effects these kids have. It’s so true, though, Dr. Scott. Okay. So we actually have to go take a break and hear from our sponsor, so if you don’t mind, Dr. Scott, if you could just hang tight. And then when we come back, we’ve got some questions that have come in for you. One of them is about PANS and PANDAS but we’ve only talked about this is that the person is saying you talked about through adolescence, but what about beyond adolescence? So maybe we can touch on that when we get back from break. Fantastic. Okay, great. So everyone hang tight. We will be right back. You’re listening to Body Talk with Heather Morgan. Sponsored by EA is CrossFit More information at 415-314-1399 or at EAS crossfit.com. Myers financial located at 670 West Napa Street in Sonoma Myers financial is a boutique wealth management firm.

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