#126: PANS and PANDAS Disorders: Interview with Beth Maloney
Beth’s son started displaying symptoms that were extremely unlike him, and his symptoms eventually increased and became severe. He ended up missing two years of school. All of his behavior changes were due to an undiagnosed Strep infection and he was eventually diagnosed with PANDAS. Once he was diagnosed and started treatment, his symptoms began to disappear, and he began the road to recovery.
So what are PANS and PANDAS disorders? PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANS is Pediatric Acute-onset Neuropsychiatric Syndrome. The difference between PANDAS and PANS is that PANDAS is associated only with a Strep infection, while PANS can be associated with multiple infections. Both can cause symptoms such as new tics, OCD, severe anxiety, mood swing, and irritability, among other things. The changes are rapid and can seemingly occur overnight. Typically, PANDAS and PANS can occur from age three to puberty. They can affect all children, including typically developing children, as well as children on the spectrum.
What kinds of treatments will a child diagnosed with PANDAS or PANS need? Possibilities include antibiotics, steroids, and potentially even psych meds. It’s important to seek treatment if you see rapid and extreme behavioral changes in your child. Ultimately, you know your child and are the best at detecting any changes in behavior and health. If you suspect PANS or PANDAS, trust your gut and discuss your concerns with your healthcare professional.
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Beth Alison Maloney began her legal career in the entertainment industry in Los Angeles. Knowing the power of a true story and vowing that no child would suffer as her son had, she wrote the pivotal memoir Saving Sammy: Curing the Boy Who Caught OCD. The book reads like a novel, describing the battle it took to have her son properly diagnosed and treated for strep-triggered mental illness. The acronym for the disorder is PANDAS. Her appearance on The Today Show with her fully-recovered son put PANDAS on the national radar in 2009. Seeking to further empower parents, in 2013 she authored Childhood Interrupted: The Complete Guide to PANDAS and PANS. In 2015, the Wall Street Journal named her in “5 Things to Know about PANS.” In 2019, Ms. Maloney created the relationships that led to establishing clinics to treat the disorders at UCLA and the University of Arkansas. She is a nominee for the the2021 Catchers in the Rye Humanitarian Award of the American Association of Child and Adolescent Psychiatrists. As an attorney, Ms. Maloney is nationally recognized for her expertise in fighting “medical kidnapping” cases, a term commonly used to describe when medical providers and child protection services collaborate to have courts remove the custody of children from parents who disagree with doctors. She has been featured on numerous television and radio programs, and podcasts, and has spoken at conferences across the country and internationally. Her third book is on the way.
- What should you do if you suspect that your child has PANDAS or PANS?
- Why are PANS and PANDAS often misdiagnosed?
- Can COVID cause PANDAS and PANS?
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— #028: Autism & Medication with Dr. Michael Murray, Psychiatrist
— Book: Saving Sammy
— Book: Childhood Interrupted
— Beth on the Today Show
— Beth Alison Maloney website
— Inflammatory Brain Disorders Conference
— SARS-CoV-2 related paediatric acute-onset neuropsychiatric syndrome
Transcript for Podcast Episode: 126
PANS and PANDAS Disorders: Interview with Beth Maloney
Hosted by: Dr. Mary Barbera
You're listening to the Turn Autism Around podcast, and I am your host, Dr. Mary Barbera, and today I have a really special guest. Her name is Beth Allison Maloney. Beth is the author of two great books, Saving Sammy, which was published in 2009 and Childhood Interrupted, which was published in 2013. She is an expert on a condition called PANDAS and PANS, and we're going to talk all about that. But it's basically an autoimmune disorder. And Lucas had PANDAS diagnosed and several of my clients showed signs of PANDAS and PANS. So it's happening both with typically developing kids as well as with kids on the spectrum. So I wanted to have Beth on to discuss it. In 2015 the Wall Street Journal named Beth in Five Things to Know About PANS, and she recently is a nominee for the 2021 Catcher in the Rye Humanitarian Award of the American Association of Child and Adolescent Psychiatrist. So this episode is all about an infection which causes, can cause, PANDAS and PANS. So let's get to this important episode.
Welcome to the Turn Autism Around podcast. For both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author, Dr. Mary Barbera.
Mary: So, Beth, it's so nice to finally have you on the show to talk all about PANS and PANDAS. Thank you so much for joining us.
Beth: Well, thank you, Mary, for having me.
Mary: Yeah. So we always start with describe your fall into the autism world. And I know you're not in the autism world, but you are very much a part of the PANS, PANDAS world. And so can you describe your fall into that world?
Beth: Yes, my middle son, right at the point in time that he turned twelve, suddenly started having a series of bizarre behaviors. And those behaviors began with him walking around with his eyes shut feeling as he went. And I thought it was a quirk that he would lose. But every single day for months, there was a new behavior.
Mary: And what year was this around?
Beth: In 2002, OK. In 2002. So he ended up missing two full years of school. So he missed all of sixth grade and all of seventh grade. And it turned out that he had an undiagnosed strep infection, the same infection that ordinarily shows up as a sore throat or another physical symptom. I learned that in some children it presents behaviorally.
Mary: That's why so he was he was walking around with his eyes shut and what else was he doing?
Beth: Eventually he wouldn't walk, he would only hop. He had to hold his breath when he was ever in certain places in the home. He could not eat if anyone was breathing at the same time he was trying to. We had to have all of the lights on in our house 24/7. He could not flush the toilet. He could not stand the sight of bare feet. He could not tolerate the clicking of a clock on the wall. That ticking. We had to put all the clocks in closets. He thought that there were laser beams shooting out from electric outlets that he would have to climb over. He was, of course, unable to go to school. He wasn't even able to get out of the house. And this was a boy who had been totally, "normal," never had any problem going to school. Suddenly, extreme periods of, they weren't rage, but he would be screaming simply because he was in such emotional pain as a result of not knowing what this was. Some kids do become rageful. He didn't, he had tics. He would his voice would jump like that in the middle of the sentence. He could only eat with a particular fork and knife, if he ate at all. Eventually he stopped eating. When he did, he could only eat from a certain plate. So he was diagnosed first with obsessive-compulsive disorder, then Tourette Syndrome. And none of the doctors who we were seeing were ever able to explain to me how this could have happened.
Mary: So suddenly. It was like one day it started and then it just kept progressing. And and that as a parent, you're you're terrified, like, what is this? And is it just going to continue to get worse? Is this my new life? And you you wrote the book Saving Sammy to document your journey with Sammy. And and what year was this published?
Beth: That was published in 2009. And the interesting story behind that is that I met a new friend, a mom of my youngest son, and we went for a walk one day and I said something casual like Sammy, was recovered at this point. And I said, "after what we went through with Sammy." And she said, "well, what was that?" And I started to tell her and she really couldn't believe that he had been that sick. And the problem was a strep infection. So I went home after the walk and did a lot of research. And I realized that if he had gotten sick then, which was 2007. So five years had gone by, we wouldn't have been any further along than we were when he got sick in 2002. There was so little information. And so I knew that the best way to get that information out would be to empower parents. And that's why I wrote the book.
Mary: Well, it's interesting because I read the book back when it was published and I'm just doing the math here in my head really quick. So, so my son Lucas, as most of my listeners will, will recognize his name. And he's twenty four years of age now. So he was born in '96. So when he was six years old, also in 2002.
Beth: Oh interesting.
Mary: He developed acute onset tics one day at six years of age he started at first they were like a little shake with his head towards his, towards his shoulder. And then the next day it was adding a vocal tic to that. So it'd be "neh, neh". And I was studying to become a behavior analyst at the time. I was a registered nurse, married to a physician. And I'm like, what is happening here? He'd already been diagnosed with autism for three years. He was in an ABA program. This was clearly something was happening, like medically. So of course, you're you're thinking Tourette's and all that stuff. And at the same time, I remember it was June and he had kind of sores on his legs that looked like almost open mosquito bites. And I knew that he would take an antibiotic called Zithromax. And I started Googling, I guess Google was around at the time or something was around. I started searching acute onset tics. Because that was very clear what it was and came up with PANDAS and I said to my husband, because as a registered nurse, the open lesions on the leg might be like a staph infection. And then I was reading about PANDAS, which is strep. And we should we should define PANDAS as Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. And at the time, that's what everything was called, PANDAS. And so I said to my husband, if if this is a staff thing causing these tics, oh, before I even before we got him on antibiotics, it was only a five day dose of Zithromax. Before I did that, I took data. I actually had a clicker, I had a clicker laying here. I had a clicker and I had the therapist counting the ticks. And the one day we got like five hundred and thirty for this period of time. The next day we got four hundred and eighty. I mean, she was here for six hours or whatever it was. Both days doing very different activities. It factor, it averaged at literally both days, 1.39 per minute. That's so bizarre to me as a behavior analyst because it was like sometimes he do four a minute, sometimes he'd go a minute or two without doing it. And they both factored out to 1.39 per minute thing, which made it seem as a as a behavior analyst in training that this isn't behavioral. There is something magical going on. As a registered nurse, I'm like, so we put them on five days of antibiotics. Before that also, in addition to the tics which kept getting worse, like louder, more pronounced, maybe an arm movement with the tics, that was bad. He also got aggressive and bit me and his younger brother, like the first time in four years he actually bit us. And I'm like, oh my gosh, not only is he having these tics now, he's biting. Something is really, really wrong. And on day five of the antibiotics, it went down to zero. And then I finally, and of course, I'm calling everybody trying to get in to see a neurologist and to whatever I could find, and by the time I got to the neurologist, he's like, oh, it was just a stim. Like it was just your imagination. And I'm like, hello, it wasn't my imagination, I have data. I probably still have it somewhere in this house. And I have clinical evidence to show that it was five hundred a day and now it's zero after day five of the antibiotics. So. So but you you weren't thinking it was PANDAS.
Beth: You were way ahead of me because I, I don't have any medical education at all. I'm a lawyer. And so I started taking him to a psychiatrist. I took and I must tell you, we went in a period of six months, six weeks excuse me. We went from a totally functional child to couldn't even get out the front door. It was horrifying, what we saw. So finally got him into a psychiatrist, basically by begging and promising, I'll pay cash, whatever it takes. I've just got to get him somewhere. I was talking to psychiatrists who told me, well, they do an assessment, but they couldn't treat or a psychiatrist who would say, well, I can see him in six months. And I said or thought to myself, maybe, but I might have said in six months he could be dead because that is how bad it was. And so I finally got him into a psychiatrist who told me it was obsessive-compulsive disorder and put him on psych drugs. So I thought, problem handled. You know, it's unfortunate that this happened, but it happens and we'll give a little time.
Mary: The psych drugs didn't work.
Beth: They didn't work. They did not work. He just kept getting worse. And so the lawyer in me who wants things to go from point A to point B to point C in a very logical way, would say to the doctors, this doesn't make sense to me. Why would this happen? And I could never get an answer. It happens. That's what I was told. It happens. And through a complete coincidence, he was horribly bad. And I called my mother basically to say, I'm going to have to give up. I, I can't do this anymore. I had a, I have three boys. My youngest was just miserable. I wasn't helping Sammy get better. He wasn't getting better. He was getting worse. So maybe the doctors were right and I was going to have to put him in some sort of a placement who could address these behaviors, because I couldn't. And I was sobbing and hung up the phone. And my mother called me back and said, I need you to talk to this woman who works with me. And she came on the phone and said, Have you had him tested for strep? And I said, well, he's never had strep, and she said, will you won't you don't know that unless you run a blood test
Mary: Because most people think it's just the swab in the back of your throat, but you can get it systemically, you can get strep, really on any parts of your body. And did he have strep throat or. It was just an in his blood?
Beth: It was in his blood. He had never before this happened. He literally had never missed a day of school. There was one day he woke up and didn't feel well. So I said, OK, we'll stay home. And at noon he said, Mom, I'm better. I want to go to school. And I said, don't don't you think you ought to stay home? And he said, No, I want to learn. He was probably seven at the time. Right.
Mary: So he was twelve when he started with symptoms. And when did you figure out PANDAS?
Beth: A full year later.
Mary: One year later. Wow. Yeah. I think because I was a nurse, I was just like and he and Lucas had autism. He had ABA. I was studying to become a behavior analyst. I was like, what is the function of this? And it's like there's no function. It's 1.39 a minute whether we do this or that. And it's got to be medical and it's probably related to the lesions on his leg. Legs. And I started Googling and so thank God I found it. And and from six from that point until he was fourteen, he was probably on antibiotics another twenty times because as soon as he would get tics, we would put him back on antibiotics. So and we worked with our pediatrician who was who was fine with it. I later learned from some experts that like putting kids on on antibiotics like that is not a good thing. It actually they should be on steady antibiotics and be seen and really get better. But he had vocal tics. And then when he was, I think about thirteen, he actually developed burping tics where he would burp a hundred times an hour or five hundred times an hour. It was ridiculous. And we were like, is this a sinus infection? So then I came upon today's show clip of a girl that was sneezing, had sneezing tics. Right. And went to a doctor up in Connecticut. So we went up to that doctor in Connecticut. Lucas ended up getting allergy shots locally. He's still on allergy shots, a big part of his PANS, PANDAS was chronic sinusitis, which we which is now well-controlled. So it's been quite a journey for us within the whole PANDAS world as well. So. So when did PANDAS turn into PANS? So PANDAS, again, is related to strep, but PANS is Pediatric Autoimmune Neuropsychiatric Syndrome because along the way, in the 2000s, mostly because of your book and your work and you're pushing people, physicians and researchers, they figured out that a lot of the PANDAS symptoms were not related to strep, but they were related to other things or what other things and when did that change?
Beth: So what happened was the theory of PANDAS or the hypothesis began around 1995. The association was made there was something called Sydenham's chorea, which is a movement disorder associated with rheumatic fever and rheumatic fever we now know is caused by strep. So researchers started to notice that the movements of the children with OCD and the movements of the children with Sydenham's chorea were very similar. And so then they thought, well, could these kids with diagnosed with OCD who do these sort of jerky movement? Sammy also did that kind of jerky stuff, for lack of a better word. Could that be strep? So they started doing research and were able to actually link it to strep. Still, it it was interesting that you said that you saw neurologist because neurologists tend to be very difficult about this particular disorder.
Mary: It's still it's still pretty controversial. And it was first kind of discovered in 1995. Right. And I luckily found it in 2002 on a Google search, but still today, 2021, there's still people that physicians, researchers who "don't believe" in PANS and PANDAS. Is that the case, is that what you're saying?
Beth: It is the case. And in fact the I want to make sure I say this correctly. The British Pediatric Neurology Association just came out with a position paper saying that there's really nothing to it. So they are even further behind than the United States because in the United States, if you know what you're looking for, you can generally find help. So in, one of the things I would say that you also have an advantage is that most parents of children who have autism, when their child presents with these different behaviors, the ones you're describing, it's interesting that you said burping because Sammy used to sit at the table and. It just it was so nerve racking because it would stop and you would think, oh, OK, and then he'd start again, that when a child has autism is often just attributed to the autism. And so it's never really ruled out that maybe there is something causing this change. So you had and advantage because you and not only that, but you knew to Google for acute onset. I had no idea. I just I know know you were way
Mary: Back when Lucas was diagnosed in '99, it was just the beginning of AOL. There was no Google yet. Once there was Google, there may be Google back then because I remember one of my first searches that led me actually out of denial and into the world of autism was my search for is it hyperlexia or like interest in letters because Lucas also had that. So I found the Hyperlexia Association and I found a mom who basically told me, well, even if it's hyperlexia and just a speech delay, you want to look at what they're doing for kids with autism. And I on my way home, I got a book on autism and I was like, oh, my gosh, he has autism. So I began searching early and often for everything.
Beth: And you knew the keywords and there was some way to search because once I had that conversation with my mother, I was able to then go, or with my mother's friend. Then I went online and then I plugged in strep, OCD. So I found I found research. So that started in '95. But nobody really I mean, there were few doctors at the end I made who knew about it. The researchers knew about it, but there was no widespread awareness. Then my book comes out in 2009 and we went on the Today show and all of a sudden parents all across the country are saying, hold on a second, maybe this is what's wrong with my child. So this tremendous groundswell begins to build of parents insisting that their children be treated or that infection's be ruled out. And then in 2012, there was a conference of researchers who put forth the idea that other infections could similarly cause these behavioral problems. And that was then pediatric acute onset neuropsychiatric syndrome PANS.
Mary: So that's when in 2012 and started to switch from pandas only to PANS, which was and I can name a couple of bacteria and viruses that can cause PANS besides strep, staph, staphylococcal infections, mycoplasm, Lyme disease, any others that you know of?
Beth: Oh, and now covid. OK, well we're going to get you covered in a minute. But before we do that, let me let me jump back, because this is fascinating to kind of hear the the background information. And so, I did a and we're going to link your your Today show link in the in the show notes. And you are also on the doctor show, which I saw with you and Sammy, your son. And so we can link that in the show notes, because I think both were really great. And I saw and will link both your books as well. But because I did a video blog back maybe three years ago and and because I was pretty vocal about as a behavior analyst and a nurse, that Lucas had had PANS and PANDAS. And just talking to a couple of friends who were behavioral analysts, I was able to help or hear about other friends who had kids with the PANS, a couple behavior analysts who came to me. When there are kids like Sammy, all of a sudden typically developing all sudden and usually it's OCD, obsessive-compulsive disorder, stuff going on and tics and, or ticks. But it could start more like walking with your eyes closed or rages or and it can look especially with the child with autism, and I've I've dealt with a number of clients with an autism diagnosis who developed PANS symptoms on top of it. And so in some ways, yes, I had an advantage because I was able to Google and I was able to put it together pretty quickly for Lucas. But most parents of kids with autism, they're just told, well, that's a stim. And that's that's Tourette's on top of it. Let's put them on another med. And these kids really unravel. And I, I know we talked before we hit record the statistics, you said there's really not good research to know how many kids in the general population have PANS, are diagnosed. You said there's been some talk about one in two hundred, but there's really no research to actually show that. I'd be interested to know how many kids with autism also have PANS or with PANS who are also autistic. Because I do think that, you know, for a typically developing child like your son to go from completely typical to having serious what looks like mental health issues, but it's actually caused by an infection is different than somebody who's autistic. And all of a sudden they start perseverating much more. I had a friend who had an autistic child and they started ripping up papers obsessively and they started sleeping poorly and they started with rages or aggression like it can look different. I remember one time I was in in a verbal behavior classroom and I was I was told that this little boy, I'll call him Nick, he was probably eight or ten or twelve. And they said, you know, Nick is really out of control, like, all of a sudden. And I was like, Really? I've known Nick since, he's been like a two year old, literally. He was in from my local area and his mom. And so I I'm coming in tomorrow. I'll take a look at Nick. And they were reporting that he was peeing in the corner of a classroom. I'm like, what? Right. And then I'm like, this is not any behavior that you would expect, you know? But if you have a child with autism who's peeing in the corner of the classroom, you think it's behavioral for attention to get out of something. I go in there and Nick was sitting there and he was blinking really hard, really rapidly, and he was also clearing his throat. So those are tics. So I knew, because Lucas had it and a couple of my other clients had it that I knew to count, to have the school call mom, have the child taken to the pediatrician. And so hopefully this this show will will bring up some more awareness. You also wrote another book called Childhood Interrupted. Yes. When was that book published?
Beth: That was in 2013. and that was published because at the time I wrote that I had fifty thousand emails from parents and they tended to fall into the same category. So for example, somebody the example you just gave of that of Nick who suddenly is having these different behaviors. So that is a pretty typical presentation. Might not be that suddenly there they were toilet trained and they're not, although that's very common. It may not be the blinking, it may not be crawling, it may not be stopping eating, but there is a change. And so what I realized was that then I would be answering every one of these emails individually. And I realized that maybe what I could do is compile all that information in one place so that parents would be able to really have have a book that said, OK, this is what it looks like. This is what you do, here's how you work with doctors here, here's all the different specialties and here's what may happen in school and just take parents through it step by step. And it's really had a tremendous impact. Parents love the book because it's wild. Saving Sammy is our personal journey. This is just more. Here's a handbook. Your child has this, here's what you need to do.
Mary: So what would a parent who's listening or professional do if they think someone has PANS or PANDAS?
Beth: Well, couple of things. It is primarily a clinical diagnosis, meaning you go to a doctor who is familiar with this and they, frankly, sometimes can just. Observe the child for not even that long a period of time and say, I think this is what is happening and we were fortunate because our blood test for Sammy did show the elevated level of strep titer. So certainly you could start with something like that. If blood is run, they should look for strep, they should look for Lyme, they should look for mycoplasma. But sometimes you're not going to find it. And a clinician who's familiar with this will actually prescribe an antibiotic and give it a little bit of time, maybe two weeks, and see if it makes a difference. And so one of the things I did in Childhood Interrupted is I interviewed, I forget, maybe ten or twelve doctors who really treat this. And so in the back of the book are their full interviews. And the reason I did that was because I was hoping that parents could take that book to their own doctor who might not have a lot of experience in the area, but would be willing to at least read how other people treat it. And I wanted to present a variety of views because I knew as a lawyer that I could read ten or twelve different ways as to how someone would handle a case and one of them would work for me and get me to where I needed to be. So you have to really have a doctor who is supportive. And if you bring this up, I would say, and are immediately dismissed. Oh, no, that's not it. He'll grow out of it or she's just having a tough time or well, this is autism. I think you need a different doctor
Mary: Or this is suddenly bipolar disorder or suddenly schizophrenia. Because that's also a risk is all of a sudden you get like this is it? You know, this is a new life for you. And it's if it's all based on an infection that can be treated, it's really scary. I know I've gone to a couple of presentations on panels and pandas online and in person and one of the practitioners and I'm not recommending this, of course, everything we're talking about is not recommendations as professionals, but one of the the experts on this said that if she has a new presentation of acute onset tics,obsessive-compulsive, it looks like it might be PANS. She treats with three weeks of Zithromax and both as a diagnostic if it gets better, then it was probably PANS and and also as a treatment, because if you have a child that's not getting out of bed or not getting out of the house or refusing to eat, you know, you want to see if you can fix that, at least temporarily. But there are other treatments that the child may need to go on to get IVIg infusions. There's some research on plasmapheresis. I mean, there's maybe some kids might need some psychiatric medication on top of it, like there. It's not just give them an antibiotic and they might need steroids, which when Lucas had his burping tics, steroids really helped that.
Beth: Sammy was so severe he had to be on the correct psych meds for a period of time. The psych meds that we were getting from the psychiatrist in the beginning were not helpful. But when I got him to a doctor who knew what she was doing, she said, OK, this is what we need. And he needed those because he was so sick. And a lot of the, I don't want to say the stronger. You have a better word for it. Like IVIg, you shouldn't really have to go there if you catch it soon enough. I say it's like cancer if you get it at stage one or stage two much different than if you're not diagnosed until stage five,
Mary: Is there is there a typical age when these symptoms appear? Or is it a wide range?
Beth: There is a wide range. NIMH, I believe, has now revised their criteria to say at any time before puberty they think. However, I must tell you that when Sammy got sick under their criteria, he didn't qualify because at that point, they basically said you had to be eight years old or under. So I think it really is a matter of, you know your child and it's important to really give yourself a lot of credit is being the person who is closest to the situation and you know your child. And if the child that you are now living with is not the same child from two or three weeks ago, there, I think is there's a good likelihood that there's an infection that's causing the change.
Mary: Yeah, and just a couple tips there. I did a podcast interview with Dr. Michael Murray, who's Lucas's psychiatrist. He's also an autism dad. That's at episode twenty-eight. So, marybarbera.com/28. We talk about a little bit about PANS. We talk about Lucas's med that he's on that has really changed his life, which is not related to PANS, but it's related to an autonomic nervous system dysfunction. There's a lot of big words here. But the other thing I will add as a behavior analyst and a nurse and a mom of someone with PANS, if you think a child or a client has tics, especially repetitive movements, tics or something that is going up or even peeing in the corner of the classroom or anything like that, the very best thing you can do if you're a parent or professional is if it's really rapid, like set a timer for ten minutes and either take a clicker or just tally how many burps, how many how many eye blinks you could tally two columns. And then also you're going to take a video of it because it might not show up that same day, you give the doctor appointment and then also get a calendar, a physical calendar. And in here write down ninety-five ticks or or ninety-five or six in ten minutes or ninety-five ticks in an hour, peed in the corner of the classroom. Whatever your calendar says, started on Zithromax day one, because these meds are not necessarily going to work. And then you'll be in much better shape to bring your calendar and not just have him eyeball him today. The symptoms started on November 1st. Then it progressed to this. Then we put him on this. Then it's still here. Now he's progressed to this. The calendar system is actually a big part of the fourth step of the turn autism around approach. I go over it in my brand new book, Turn Autism Around. And it's it'sreally important whether or not these are behaviors related to a medical problem or new behaviors related to reinforcement that maybe have nothing to do with with a medical condition like PANS. But I do think that there's a whole lot going on with both typical kids and and with kids on the spectrum that is is related to medical issues that is not being diagnosed. So before we go, let me let's talk briefly about you said earlier and I didn't really want to go there yet, but covid could be a cause of PANS. Can you tell us about that?
Beth: Yes. Well, one of the interesting things when the covid, I think most people are aware that long haulers with covid have mental health symptoms. And when I started reading about that, I thought this sounds very similar to PANS. You have an infection. The infection is supposedly addressed and yet the mental health symptoms persist. So interestingly enough, just the day before yesterday in The Lancet, there was a study published by physicians in Italy where they tracked two children who suddenly presented with behavioral symptoms. And there seemed to be no real explanation for it. When they traced back, they realized that the kids had been exposed to covid and then they ran covid tests and found it. And so these doctors, although they did not have the typical symptoms of covid, they had behaviors. And so these doctors were advocating for the fact that covid now has to be in the differential diagnosis for PANS as another potential trigger.
Mary: And just like Lyme and Mycoplasm, it could be triggered by covid in the short term or long term.
Beth: So I think that is a further indication that there is no question about the fact that infections caused mental health symptoms. Look at syphilis. People were diagnosed with all kinds of psychiatric disorders locked in psychiatric institutions, and they had syphilis. And it took a substantial period of time to recognize that, in fact, it was that behavior causing the mental health symptoms.
Mary: And a lot of times it's the mom or the parents, but usually the mom who is like. This is not right. This something is going on that is not right and, you know. In a lot of ways, the whole science of patterns and pandas is relatively new, it's it's not been around very long and, you know, most movements and most things that are big like this are started by parents, by moms who who really are not going to take no for an answer, are not going to take, you know, I really do think that if we look at the mental health system for kids, we would find a ton of undiagnosed PANS and PANDAS. We look at kids with Tourette's, kids with autism, and look at the broad range of symptoms that could be you know, it may not like Lucas, it didn't do anything to his autism to treat him for patterns. I mean, he didn't suddenly get all better, you know, and not have autism anymore. But it certainly improved his quality of life because if he was ticking at 1.39 a minute and having aggression to the point of biting, I mean, yes, you know, it's really important that we try to help our kids. And so I think this has been really helpful. So the other thing that you mentioned to me earlier, if a parent or pro wants to learn more, one thinks their child might have autism. You do have a really helpful website called PANDAShelp.com is your website and you, they can follow your work there. They can learn how to find a doctor who might be able to help treat them. And they can learn more by reading your very excellent books. I love them both. Thank you. Thank you. So before we go, I always like to end with part of my podcast goals is not just to help our kids and our clients, but also to help ourselves be less stressed and lead happier lives. So I know you're very busy. You're working on a third book and you're you're busy getting the word out still after all these years. Yes, but do you have any self-care tips or stress management tools that you use either on a daily or regular basis to to keep your stress levels down?
Beth: Well, for me, it's exercise. So I am always focused on being able to take a walk, go for a bike ride or go kayaking. And that is what restores me when Sammy was sick and my home was just in overwhelming, unbearable crisis, that wasn't always possible. But certainly as things got better, I was able to do that. And I wanted to add, I think your tip about calenders is so important because I did that I kept a calendar and it was so encouraging to me because it took a really long time for him to get better. It was a full year before we were able to really get it under control. And I was able to look back at that calendar, at the earlier pages and say, OK, you know what, we're better. Maybe the ticks aren't gone, but look how much better they are than they were. So I think that's really a good tip. And I sometimes just sit there and look at it and that would calm me down. It's like,
Mary: Right. You know, you're going in the right direction,
Beth: Going in the right direction. So that was good.
Mary And that's part of of what makes us happy is making progress and going in the right direction and seeing things improve. So whether you have a child with severe autism who doesn't have tics or PANS or PANDAS or if you have you know, if you're if you're listening, thinking and if you're a professional out there, I really encourage you to start looking at things a little bit more with your eyes wide open to look for patterns and pandas and and to check out their books and her website. PANDAShelp.com, thanks so much for joining us today. I've learned a ton and I'm sure my audience has to. So thank you so much.
Beth: You're welcome. And thank you for having me.
Mary: If you're a parent or early intervention professional, working with young children with signs of autism or if you're a parent or professional, helping older children with moderate to severe autism, you'll definitely want to order my new Turn Autism Around book. Today, you'll get access to all the book resources that will help you right away. For all the details, go to turnautismaround.com
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