S2 E16: Dr. Andrew Baumel: One Pediatrician's Journey to Include Mild Cases of PANDAS/PANS into his Everyday Practice

Dr. Andrew Baumel's story reveals how curiosity, compassion, and clinical observation can lead to breakthrough care for children suffering from immune-mediated neuropsychiatric disorders.

After 18 years as a traditional pediatrician, Dr. Baumel's professional trajectory changed dramatically when a parent asked if he knew anything about PANDAS. Though initially somewhat skeptical, attending an educational lecture with the parent in 2014 convinced him this was a genuine medical condition affecting children's brains following infections. Fast forward, he has now treated over 300 patients with mild to moderate cases of PANDAS and PANS using straightforward medical approaches in his regular pediatric practice.

Dr. Baumel shares fascinating clinical insights, including his identification of "protopans" – early, limited symptoms following infections that, when treated promptly, appears to prevent progression to full-blown disorders. 

"I have a regular practice of 1500 kids, ages 0 to 23 years. I just incorporate these [mild cases of] PANS/PANDAS into my regular practice as my regular patients. This is doable," Dr Baumel said.

Dr. Baumel offers thoughtful perspective on why acceptance of PANDAS/PANS has been slow, drawing parallels to historical medical discoveries that initially faced skepticism before becoming standard practice.

Link to video of 2014 PANDAS Doctor's Breakfast that Dr. Baumel mentioned in this podcast: https://aspire.care/videos/qa-breakfast-for-doctors-featuring-national-pans-pandas-expert-panel-nepans-2014/  (Aspire website)

Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.

Credits: Music by Kingsley Durant from his "Convertible" album

To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org

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Transcript

Introduction to PANDAS and PANS

Speaker 1 0:07

Untangling Pandas and Pans is a podcast about two little-known medical disorders characterized by the sudden and dramatic onset of symptoms such as obsessions and compulsions, vocal or motor tics and restricted eating behaviors, and a whole host of other symptoms following a strep or other bacterial or viral infection. I have the privilege of interviewing some of the top researchers and clinicians in this rapidly growing area, known by various names such as immune-mediated neuropsychiatric disorders, infection-associated neuroimmune disorders and autoimmune encephalitis, or simply PANDAS and PANS. My name is Dr Susan Manful. I am a social psychologist, the executive director of the Alex Manful Fund and the mother of Alex Manful, who died at 26 years old due to PANDAS, a disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.

Speaker 2 1:19

This is episode 16 of Untangling Pandas and Pans, recorded June 6, 2025.

Speaker 1 1:29

Welcome to Untangling Pandas and Pans, a monthly podcast in which we talk about infection-associated immune-mediated neuropsychiatric disorders. Today I'm in Framingham, massachusetts, meeting Dr Andrew Balmel, a general practitioner for the past 30 years. We're in his office at Framingham Pediatrics where he is a partner, and we're together because I know that in Dr Balmel's repertoire of treatments for conditions children typically present with in his office, he includes an approach for treating children with mild cases of PANDAS and PANS. Many of my podcasts and much of what I write about have to do with more severe cases of PANDAS and PANS. I wanted to focus today on more mild cases and their early treatment, to underscore that this is possible to do in a pediatrician's office I knew the perfect pediatrician to call. We will talk about what brought him into treating mild cases of PANDAS and PANS and what his treatment consists of of pandas and pans and what his treatment consists of. I would love to see more pediatricians consider expanding their expertise and broadening their toolkits to include treating mild cases of these disorders and I hope this interview will pique their curiosity.

Dr. Baumel's Path to Treating PANDAS

Speaker 1 2:59

Dr Baumel earned his bachelor's degree in biology at Yale, his medical degree at the University of Pennsylvania and he completed a pediatrics residency at Northwestern University Eleven years ago he was asked by a friend to treat her two children for pandas. Now he has treated over 300 children for pans and pandas, treated over 300 children for pens and pandas. When Dr Balmel is not in his office or attending symposia, you might find him running around in the woods with a map and a compass, because he is an avid orienteer, which refers to a very popular Scandinavian sport in which people complete a course of checkpoints in a specific order, most often in the woods. Sounds like a lot of fun. Two other hobbies that Dr Belmel has are fencing and celestial photography. Okay, dr Belmel, let's get started. Tell me, how did you come to choose pediatrics as your area of medicine to pursue?

Speaker 3 4:09

Well, my first job growing up was as a babysitter, which I enjoyed, but then I became a camp counselor and I really enjoyed that. I was a camp counselor in New Hampshire on Lake Winnipesaukee for five years and I learned a lot from a social worker who taught our new counselors how to understand children and what discipline was like and how to interact with them. So I really enjoyed working with children. And then I had a knack for science. So I figured, if you add science and working with children and people and you come out with pediatrics.

Speaker 1 4:45

Ah, that sounds right. So this year I saw in Boston Magazine that you were listed as one of the top doctors.

Speaker 3 4:56

Thank you very much.

Speaker 1 4:57

How did that feel?

Speaker 3 4:58

Oh, it felt great.

Speaker 1 5:00

I bet it did All right. Well, how long have you been in pediatrics?

Speaker 3 5:04

I've been in pediatrics now for almost 30 years.

Speaker 1 5:07

Okay, how long have you been treating individuals with PANS and PANDAS?

Speaker 3 5:13

I started treating PANDAS patients in 2014, and that was 18 years into practice.

Speaker 1 5:19

You want to tell me a little bit about how you got started?

Speaker 3 5:23

Sure. So I didn't search out PANDAS or had a special interest in it at all. It was a parent-teacher conference in kindergarten for one of my children. At the end of the conference it was winter 2014, she asked me do you know anything about PANDAS? And I said I know it's associated with strep, but I also know that most of the establishment doesn't think it's a real disorder. And I said I know it's associated with strep, but I also know that most of the establishment doesn't think it's a real disorder. And she said I think both my two of my kids have it, my son and my daughter. And I said tell me about the symptoms. And she opened up a webpage for New England PANS and we saw the symptoms. And she said my daughter has these, my son has these, saw the symptoms. And she said my daughter has these, my son has these.

Speaker 3 6:04

And I said well, you're the best teacher in the school. You, you're really smart. And and we saw on the webpage there was a lecture coming up in three weeks in Braintree. It happened to be my day off, so I took her to the lecture. I said I can bring you, you're not a physician. I'll translate the immunology for you and we'll learn about it. And so we went and the lecture was great. It was a panel discussion with Dr Mark Pashnak, beth Latimer, susan Suedo, who first described the disorder in 1998. And Peg Chapman was the moderator and we learned about PANS-PANDAS then. It was a fantastic lecture. It's still on the web if you want to watch it.

Speaker 1 6:50

If you type in PANDAS Doctors Breakfast 2014, it's on the Aspirecare website and I do recommend watching it. It's still a wonderful lecture. I'll put that link on our page so that people can find it.

Speaker 3 6:56

And the most important person for me there was Mark Pasternak. He was a well-respected infectious disease doctor at Mass General Hospital. He was the chair of the infectious disease department for children there and he said that five years before he had started treating kids in his outpatient clinic who had anxiety and OCD and he would treat them with antibiotics and they would get better and their anxiety and OCD would go away. He said this is absolutely a real disorder, no question about it. That convinced me that you know this was real. It was similar to rheumatic fever, but more mild, and so we left the panel discussion and we said, yeah, it sounds like your kids have this.

Speaker 3 7:40

So she went back to her doctor who, when she called her I think my children have pandas just laughed at her and said there's no such thing. So then she called me and said would you take care of them? And I said, well, no, I don't know what I'm doing. And she said, well, let's just learn, let's do the easy things we learned about in the lecture together. So I said OK, and we treated her children with antibiotics and then we quickly learned about Dr Frankovich's research with naproxen and we used naproxen and her both her kids got better pretty quickly and from there my partner heard about what I was doing. He sent me up one of his kids' friends who had PANDAS treated him. Then I got a fourth patient and a fifth patient and now I'm up to 322 patients that I've evaluated and about 300 that I've treated for PANDAS.

Diagnosing and Treating Early Cases

Speaker 1 8:34

Oh, my goodness. And you said in the past 12 months that you've had 45, whereas usually you've had 25. Yes, so you're getting more and more. Yes, do you think you're getting more well-known or do you think people are more aware of what the symptoms are and seeking your help?

Speaker 3 8:53

Well, I'm not sure. I know that. When I ask people how they find me, usually they find me on the Internet. I did an interview about five years ago with Anna Conkey from NeurOmuneorg that's published on the web, so if you search my name in pandas that'll come up. A lot of people find me through that interview. I also get referrals from Mass General and from other psychiatrists and psychologists in the area, but most of my referrals come from current families that I treat. They hear about another child who has having just a non-set of behavioral change OCD and anxiety and they say oh, you have to see Dr Balmow.

Speaker 1 9:30

How many of those patients do you have as clients already, and then you recognize the symptoms in them?

Speaker 3 9:38

That's a good question. I do have a subset of patients that come right from my practice or my partner's practices who just all of a sudden have it. I had a patient yesterday who is a patient of my partner and just started seeing our social worker here in the office and he had sudden onset of a very new fear of the sun exploding and he has severe anxiety anytime the color of the sky changes or if clouds obscure the sun so he can't see the sun and it's become somewhat debilitating. And it's just started about three weeks ago. So when he saw the social worker here in our office the social worker said, oh, sudden onset behavioral change could be PANDAS. Why don't you talk to your doctor about seeing Dr Baumel? He's right here in the office and he's an expert in that area. And he came in, turned out he came in yesterday when my partner was off, saw me. I tested his, I did a throat swab. He was positive for strep and I started him on PANDAS treatment.

Speaker 3 10:46

But I feel that he doesn't have enough of the symptoms to have true PANDAS. He has what I would call protopans, where you have some of the beginning symptoms a sudden onset behavioral change and strep. And I've had many patients now about 15 patients with what I would call protopans. Where I see them in the office they have strep, they have rectal strep, vaginal strep, and they have a sudden behavioral change, a fear of a cat they used to like, or they have to touch things twice or three times. Just one or two symptoms, not enough to fulfill the criteria for PANS or PANDAS. But what I do is I treat them with 20 days of antibiotics and 20 days of naproxen and in all the cases that I found these 15 kids the symptoms have gone away, usually in three to eight days completely goes away. So I'm hoping I'm going to be calling this, seeing this child that I treated yesterday up and hopefully his symptoms will also go away and he'll be able to not have fear of the sun exploding.

Speaker 1 11:56

That's terrific because, as we know, the earlier the diagnosis or the suggestion that this may be the case and the beginning of effective treatment, the better the prognosis right.

Speaker 3 12:11

And I feel that I'm preventing these kids from developing PANS-PANDAS and I feel that their symptom might wane, just a minor flare, but then either the next infection or the second or third next infection they'll have the big flare and develop the full disorder.

Speaker 3 12:27

And I feel like I'm preventing it. And I've had a kid now who I started treating for protopans at 18 months. When he started to he had a severe case of strep throat and he started pulling on his hair and being very fearful of the end of the hallway in the second floor of their house Treated him. His symptoms went away in three days and he subsequently have had five more cases of strep, both impetigo, rectal strep and oral strep, and each time I've treated him for 20 days and each time we've been able to completely suppress his two or three symptoms that develop. Each time Sometimes they change. One time it was eye blinking and fear of something at the end of the room. Another one he was scared to get in his bed. But each time he's had these behavioral changes with strep infections we've been able to suppress it completely with antibiotics and NSAIDs and he's never developed PANS-PANDAS.

Speaker 1 13:20

You have to be a very good observer and a very good listener to pick up on some of those early symptoms that we're talking about now. I'm not sure that that's the case with everyone, especially when appointments are so limited these days.

Speaker 3 13:36

Yes, it's very difficult with a busy schedule. I usually see about 25 patients a day, and the one modification I've made since I started treating PANDAS patients in 2014 was to employ a full-time medical scribe, and I started with that in 2017. So usually I have someone else in the room recording the note and while I'm asking the questions and doing my observations, one thing I found is that if your head is in the computer typing, it's really hard to see the patient's tics, because many of the patients have tics an eye blink or a head movement and while my scribe is doing the typing, I can be watching the child and I'll see subtle tics that sometimes the parents haven't picked up on.

Speaker 1 14:20

That's so interesting, that's so important, and I think by making greater eye contact, you have a better connection with the patient and therefore they provide more information or are more comfortable with you too.

Speaker 3 14:31

Yes, and the other thing that I'm doing is I'm taking these young pre-med students my scribes are always pre-med students or pre-nursing students and they're going out in the world after they are with me for one or two years learning all about PANS-PANDAS, and so they're going out understanding the disorder. When they go to med school they'll be teaching their classmates about PANS-PANDAS and saying that they've treated 200 patients. They've seen 200 patients with this disorder and it's real, and the patients get better with simple treatments. And these are the constellation of symptoms. So they'll become the new teachers and I'll be starting with my next new scribe in June. Most of the people that are with me are interested in pediatrics, so hopefully they'll go out in the world and understand PANDAS and treat it as well.

Speaker 1 15:19

That's such a service to this community to begin educating people in medicine as you have. So let's go back and maybe tell me a little bit about an intake interview that you might have with someone who's I mean not one of your original patients, but with someone who's come in thinking that they may have PANDAS or they were referred. Can you tell us a little bit about your intake interview? What would happen if I brought my child in here.

Unique Motor Symptoms in PANDAS

Speaker 3 15:54

I've learned pretty quickly that it's different from other intakes that I do so before I schedule a new appointment with a patient's family, I have them make me a parent timeline and what that entails is to write every single thing that's happened in the child's life. That's strange, a strange fear, a worry, a tick. A time when they refused to go to school, a time when they were visiting grandma and they refused to get out of the car because they were scared of grandma's dog but they used to love grandma's dog. Or an episode of a diaper rash that wouldn't go away, looking for rectal straps. So I have them make me a very detailed parent timeline and until I get that in my hands, I won't make the visit the first visit. Once I get that, I will make the first appointment and then they'll come in and I feel that that timeline is really the first visit and I'll read through it. I'll read through their medical records as well, but when they come in for the first visit, I always have the parents and the child come in and I'm able to react to the timeline. So it's much more efficient to be able to have all that data already in the chart. So it's much more efficient to be able to have all that data already in the chart and then I can fill in the gaps and I can ask more about certain symptoms and identify certain symptoms.

Speaker 3 17:15

Usually they've seen multiple specialists before they've seen me. They've seen neurologists and they've seen psychiatrists and psychologists, Most of those other pediatricians. They've all ruled out things and then they'll come in. I'll examine them. I'll get to ask questions of the patients that they wouldn't normally have told the parents, for example, looking for hallucinations and delusions. There's one particular delusion called cop craw delusion, where parents never know. That's where a child thinks that a parent or someone very close to them, a sibling, is not them, but that's been replaced with an imposter.

Speaker 3 17:50

It was first described by Joseph Copgra in 1923. In France it's called imposter syndrome also, and now I've had 18 patients tell me that they've had Copgra delusion. The first child was a girl who every time she left the house she'd be convinced that dad wasn't dad, he was an imposter. And so what they did was they worked out a password system. When she knew that he really was dad, they worked out a password and she'd have to ask him for a password when they left the house and at the beginning of treatment she would be asking for the password 90 times during one visit to a supermarket. They'd be rolling around the supermarket and have to ask him 90 times. Then four weeks into treatment it was down to 60 times and then three months into treatment she stopped asking the password at all.

Speaker 3 18:38

So I had another child who would bump into his parents on purpose to try to get their mask to fall off, because he thought that they were imposterous with a mask that looked like one of the parents. So those are questions that usually the parents can't answer or get in the timeline. So I'll ask the kids that at the first visit. And then I don't like to do any blood tests at the first visit. I'd like the first visit to be non-painful, and so I'll usually do the second visit I'll do just with the parents alone, to teach them about PANS-PANDAS and to go over what I've learned from both the timeline and the first visit. And then the third visit I'll have the child come in again, and usually at that point I'll do blood tests.

Speaker 1 19:21

You want to tell us a few of the blood tests that you run typically.

Speaker 3 19:25

I usually look for titers of past infections like strep with an ASO and a DNA sp.

Speaker 1 19:31

I test for mycoplasma, pneumonia, mono Lyme and Lyme co-infections and then I usually look at their immunoglobulin levels as well and a CBC and a chem panel. So you do look for Lyme and other vector-borne diseases and do you treat those or do you refer those.

Speaker 3 19:56

For Lyme I usually treat myself. If someone has Babesia or Lichia, I like to use my colleagues. There's the Lyme Center of New England who I like to use. Susan Neuber is there. She's very good. She does a great job treating those children.

Speaker 1 20:10

Okay, all right, and you do a physical exam, I think when you said exam, I assume you meant physical. So just anything else that would happen in the office as you're diagnosing this person.

Speaker 3 20:23

Well, no, I do the exam that Dr Suedo first taught me in that first lecture, which is the standing Romberg with eyes closed, looking for piano playing in the fingers. That's the most important test I run. But I'm looking for anything. I'm looking for rectal and vaginal strep. I'm looking for impetigo. A lot of kids will have paronychias, toenail infections. Toenail infections and loose teeth were the two most common causes of flares of my patients during COVID, when they weren't exposed to other children and getting strep, so I was looking for toenail infections as well.

Speaker 1 20:58

Very interesting. So I understand that you from our previous conversation that you also look for some what you refer to as distinct motor features. I was fascinated by that. Can you elaborate on that?

Speaker 3 21:13

Yeah, I had a patient come in who had some fascinating findings. The mom and dad were great observers and they noted that when he developed symptoms with strep infections he would not be able to ride his bike and specifically he couldn't steer and pedal at the same time. He could steer or he could pedal, but he couldn't do both. So he would pedal and when he got to a barrier let's say a car parked on the side of the street he'd have to get off his bike, move it to the side and then get back on and keep going because he couldn't steer.

Speaker 3 21:50

He also, when he threw a ski ball and rolled the ball, he could swing his arm, but he couldn't let go at the right time. He would let go either too soon and it would drop down, or he would throw it over his shoulder or into the netting in the skee-ball machine. He also couldn't tread water with his arms and his legs at the same time. He could do arms or legs, but not arms and legs together, and he would often fall out of chairs by mistake and sometimes bump into the sides of doors when he would walk through a doorway.

Speaker 1 22:21

Whereas this wasn't the case before. Right, he could ride his bike perfectly fine and toss the skeet ball.

Speaker 3 22:27

And when he went on to treatment after the third dose of treatment, third dose of naproxen, he was able to ride his bike again. He was able to pedal and steer and mom said he yelled at her and was like mom, look, look, what I'm doing, I can ride my bike again. And I've had now multiple cases of some of these motor dysfunctions in other patients, because now I always look for it and ask about it. I had a kid who was just riding a tricycle in his house and he couldn't do it. After he developed PANDAS and then again maybe five doses into the treatment he could ride his bike around the house, turning corners and maybe five doses into the treatment.

Speaker 1 23:05

He could ride his bike around the house turning corners. So do you think that these are manifestations of neurological issues? What do we think is going on there?

Speaker 3 23:13

Well, I'm not quite sure what's going on, but I think it has to do with the red nucleus, which is kind of a traffic cop that takes input from the peripheral body, including like position sense, like where your arm would be when you're swinging a ball, and then it connects to the motor cortex. So when should you let go of the ball during your arm swing? So you'd get proprioceptive input from the arm swing and that would go up the rubrospinal tract to the red nucleus, and the red nucleus has connections to the basal ganglia where the problems are with PANS-PANDAS. So I'm not sure what it is, but I think it has to do with dysfunction of the red nucleus, but definitely dysfunction of the basal ganglia, and it's only been in about 10% or less of the patients that I've seen. So it's definitely not a common symptom, but it's definitely there and it's something that you won't find unless you ask those questions.

Speaker 1 24:07

Anything particular about those 10%.

Speaker 3 24:16

Yes, they all get better with treatment. I haven't had anyone who had persisted with those symptoms on anti-inflammatory treatment. But I haven't said there's nothing else characteristic about these particular children that I could tell before asking the history.

Speaker 1 24:30

Is it strep that's the trigger for those children?

Speaker 3 24:33

Not necessarily. It could be strep, could be mycoplasma. Most of my patients are either strep, mycoplasma or Lyme. But it's not just strep.

Speaker 1 24:42

That's worth researching, isn't it?

Differential Diagnosis Challenges

Speaker 3 24:45

Yes, if I was a researcher, then that would be an area I would definitely pursue.

Speaker 1 24:52

Okay, let's see. I wanted to ask you about differential diagnosis. What are some of the other diagnoses that you may consider when you're looking at your patient and the various symptoms that they're presenting?

Speaker 3 25:09

Well, the thing that most parents have thought about already and, like the patient yesterday, with the fear of the sun exploding, the first thing we asked about was trauma. These are abrupt, severe changes. This was a boy who was completely normal prior to this new symptom of this severe anxiety. He was happy-go-lucky, going to school every day, completely normal, and then he had this debilitating fear of doom.

Speaker 3 25:37

And so the first thing you think about is was he abused? Was he abused physically? Was he abused sexually? Did he have some type of really bad event in his life? Was he abused physically? Was he abused sexually? Did he have some type of really bad event in his life? Did he see a car crash, see someone die? So that's the first thing we think about is some type of traumatic incident. And when people come in to see me, the parents have already thought of that. That's the first thing they've thought about is like how could he be so different? How could they describe this? As you know, this is not my child anymore, so you have to think about some really adverse event that happened.

Speaker 3 26:12

So that's the first thing in the differential diagnosis. And then you have to think about Sydenham's chorea. I've had a few patients come in with Sydenham's chorea. Usually they have larger movements of the body, snake-like movements of the arms or legs, wormian movements of the tongue, and that's also a post-strep complication that affects the brain. And patients with Sydenham's chorea can also have OCD. That's kind of been forgotten over the years but that was a component when it was first described many years ago.

Speaker 3 26:42

So Sydenham's chorea is definitely another thing you have to rule out. And then you have to think there's a lot of overlap with other disorders such as just regular OCD, and I look for that as well. If someone has more of a gradual onset of OCD, if there's OCD in the family, could this just be plain OCD and not infection or inflammation induced OCD? And then also, could it be Tourette's? Does someone have vocal and motor tics for more than a year and no association with these motor findings? I'm talking about handwriting difficulties, other things that I use, or multiple strep infections. Rectal strep is a big one, but you have to rule out Tourette's and then just plain old anxiety disorder as well.

Speaker 1 27:28

So I mean, it's primarily a clinical diagnosis, but, as you've indicated in this interview, there are many other things to look at and many other questions to ask. Autoimmune conditions do you talk to them about that?

Speaker 3 27:46

Well, if they have certain specific findings, skin findings that go along with rheumatic disease, or like lupus, with different rashes, also arthritis, enthesitis, yes, and then I would send them on to my rheumatology colleague.

Speaker 1 28:05

Yes, and then I would send them on to my rheumatology colleague. Okay, but you could still treat them for PANDAS or PANS if that were the case.

Speaker 3 28:16

Right. And the other thing I forgot to mention to you is that I only take care of mild to moderate patients of PANS-PANDAS. I rule out the severe kids, and it's mostly the severe kids. Where you're going to look for an autoimmune encephalitis, someone who's catatonic, I don't do intakes on those. I refer them off to other people who are more specialized in this and as a general pediatrician I really can only handle the mild to moderate cases. So if someone has been on atypical antipsychotics, if someone's been hospitalized for psych reasons, then I don't take them on as my patient.

Speaker 1 28:48

How can we get more pediatricians doing what you're doing?

Speaker 3 28:53

Well, one way is exactly what we're doing now is we're trying to publicize that a general pediatrician in regular primary care practice can treat this disorder, even from mild to moderate cases, without the help of specialists. This is pretty easy to do and I don't use any fancy medicines. I use antibiotics and I use naproxen, sometimes ibuprofen. It should be just a regular disease that a regular pediatrician would treat. The only special thing I have is, again, my scribe. That's the only extra part of my clinic that I have. Otherwise, I have a regular practice of 1,500 kids age zero to 23. I just incorporate these PANS PANDAS patients into my regular practice as my regular patients.

Speaker 1 29:38

So this is doable and the best way to get other people to do it is to publicize it like we're doing today Mm-hmm and don't underestimate your ability to observe and observe nuances in your clients that may be overlooked by other people.

Speaker 3 29:56

I actually also have had colleagues in the area that know I do this and have called me and asked me about kids and I've talked them through their first or second case of PANS-PANDAS and now they treat themselves.

Speaker 1 30:12

So going back 11 years ago, I think, when you had your first patient did you ever envision learning so much about PANDAS and PANS? Learning so much about PANDAS and PANS and I venture to say I realize you have a full practice with all aspects of pediatrics, but having such an emphasis on PANDAS, did you ever envision that?

Speaker 3 30:36

No, not at all. And when I went to the first lecture I said well, this makes sense. I heard Dr Pasnack say kids get better with with antibiotics and it just makes sense. It goes along with Sydenham's chorea. We know that there's plenty of glomerulonephritis. There's another post-trap complication and it just made sense. And I thought, well, if I believe this, everyone else will believe it too. I won't be doing anything special and other people didn't jump on the bandwagon and there's just very few of us who have gotten into this disorder. And I didn't advertise that I do this, it was all word of mouth where these patients have come to me. And I don't advertise myself as a pan specialist, I just say that I have a special interest in it and then the patients keep coming. So no, I never thought I'd have kind of 18% of my practice be PANS-PANDAS now 18% wow.

Speaker 3 31:32

Yeah.

Speaker 1 31:33

So I'm going to pick up on something that you said. You said it seems pretty straightforward. I mean, there's Sydenham's chorea, for example, that occurs, triggered by strep. Why is there such resistance in the pediatric community?

Speaker 3 31:51

That's a good question, I know. I just re-listened to Dr Ubi from episode seven of your podcast and he said it in a wonderful way and I'll try to say it like him. But I think that there is reluctance to accept a so-called new disorder into the medical field and in 1998, dr Suedo came up with a completely new disorder. Unfortunately, I think that naming it something cute like PANDAS also put a target on the disorder. And Dr Suedo is also a very mild-mannered Midwestern doctor and I think that the tougher Tourette's doctors were very scared that some of their patients would be taken away, that they would be diagnosed not with Tourette's but with Pans, pandas, and they were very fearful of that. And they said to the point where they said if someone comes in with neuropsychiatric complaints, don't do a strep test. And they also blocked funding from the NIH. If you had PANS or PANDAS on a research proposal, you would automatically be rejected.

Speaker 3 32:57

So it's been tough and in medicine we follow what our elders have done. And this is a new disorder similar to when we found that ulcers were caused by helicobacter pylori. It took 10 years for the medical establishment to agree that a bacteria could cause an ulcer. So I think that pan-span is being accepted slowly. I think we'll persevere and people will just see patients after patient after patient coming in getting the treatment and getting better Whereas in a disorder like Tourette's it's very difficult to treat and you'll see these patients coming in with their tics and OCD and anxiety and getting better with antibiotics, and you can't argue against that.

Speaker 1 33:41

And looking at psychiatry in a broader sense, we're finding that other psychiatric disorders also have an immune-mediated component, an infection-triggered and immune-mediated component.

Speaker 3 33:54

Yes.

Speaker 1 33:55

That's a real shift in the paradigm. Absolutely At the medical school level, what can be done to help educate doctors?

Making PANDAS Treatment Mainstream

Speaker 3 34:06

Well, it's being done already. Actually, my scribes that have gone off to medical school and I've had five scribes so far they have reported back that in their lectures about infectious disease lectures or neurology lectures, that they're learning about PANS-PANDAS. So the young people are being educated about PANS-PANDAS. So the young people are being educated about PANS-PANDAS. It's the old folks that are the most resistant in the establishment and I think that once the new people take over, I think that of course, the movement of all the parents clamoring for help with their children with PANS-PANDAS, then this will be much more accepted.

Speaker 1 34:41

Mm-hmm. Well, we still have one major group that seems to be kind of on the fence about this the American Academy of Pediatrics. They, of course, came out with their clinical report in December of this year. To be fair, it's not the final version of their clinical report and they stated very specifically that these are not guidelines. Nonetheless, they are being used as guidelines by some people, and certainly by insurance companies. They state that the AAP recognizes that PANS is likely a valid diagnosis, although the diagnostic process is challenged by a lack of well-accepted evidence to guide the clinician. I don't think that all diseases that you see in your office, particularly those that have a psychiatric component, have much evidence, as we would like to understand why those symptoms are occurring and to understand what treatment should be followed.

Speaker 2 35:53

This is really no different.

Speaker 1 35:59

I just wanted to ask you your opinion on this statement, which is towards the end. Under summary and conclusion. They write most children with OCD tics and other neuropsychiatric symptoms likely have conditions unrelated to PANS, even when PANS is strongly considered. Psychosocial, behavioral and psychiatric therapies are effective and should be the first-line therapies for these children with PANS. In addition, a 10-day course of amoxicillin and other recommended antibiotics should be administered to children who have a positive test result for an acute symptomatic group, a strep throat infection. There is no strong evidence to support the use of other treatments, so what are your thoughts on that?

Speaker 3 36:57

I think that's short-sighted. I don't agree with that statement, except for the part about treating strep throat. They didn't really have to state that you treat strep throat with an antibiotic for 10 days. That's a given. But most of my patients have come in with OCD tics and anxiety. They've already had those psychiatric treatments that they describe. And then they come in to see me and I give them medication with antibiotics and NSAIDs and then they get better very quickly. So over and over and over again I've seen right in front of me patients that appear to have a psychiatric illness, appear to have something else and I treat them with antibiotics and NSAIDs which should not cure psychiatric illness get better very rapidly, and there's no denying that they do. So I disagree with that statement.

Speaker 1 37:51

And just to remind the listener, there are plenty of other quote-unquote medical disorders that have psychiatric components to them quote unquote medical disorders that have psychiatric components to them.

Speaker 3 38:01

I think that if I were going to have people read this statement, make sure you read the seven comments at the end, which were written by many of my colleagues. They're excellent rebuttals of this statement, including Dr Paschnak, dr Frankovich. Including Dr Paschnak, dr Frankovich. Many of my colleagues have written really, really wonderful comments. After the fact.

AAP Report and Medical Resistance

Speaker 1 38:31

And so I would encourage anyone who reads the article to read the following seven comments. Okay, I would agree, and we could go on about this report, but I just thought I would bring those basic kinds of conclusions forward. I applaud everything that you're doing, and I know that there are many people who are standing right next to me who would be applauding as well. I'm looking around your office and I see lots of, and I am looking around your office and I see lots of pandas, stuffed pandas, pictures of pandas and I see this wonderful photograph Is it a photograph or is it a picture, let's just say, of a panda bear? And it's got all kinds of notes to you.

Speaker 1 39:20

The one I can clearly read from here says we can't begin to thank you. You've changed our lives, and I know that the group who gave you that which I'm going to ask about in just a second also gave you a plaque, and it has a quote from Sir William Osler. It says the practice of medicine is an art, not a trade, a calling, not a business, a calling in which your heart will be exercised equally with your head, and they gave this to you in 2018. Can you tell us a little bit about how they came to give you these things.

Speaker 3 40:03

Sure. Well, the occasion of this event was when I hit my 100th patient that I evaluated my fourth year into doing work with PANS-PANDAS patients. When I started out, as I mentioned before, it was a lecture that I took my child's kindergarten teacher to. After we treated her children and they started to get better, we decided to delve deep into it and she researched everything on the internet to do with parent associations and did that, and I researched the medical part and we really became a team to learn more about what is this PANS-PANDAS. We learned about the PANDAS community. We actually went together to your conference up in Ports of New Hampshire together.

Speaker 1 40:49

You've been to all three I may interject?

Speaker 3 40:52

Yes, I have. So we learned about this together. She looked at more of the parent websites and to find out what was going on in the country. What was the current beliefs, what were people asking for? I looked at the medical parts. Then we came together to come up with better ways to treat the kids that were coming in to see me.

Speaker 3 41:13

She started a panda support group online Central Mass Pans started a PANDAS support group online the Central Mass PANS and she had a really nice group of people there who were all almost all of them were being treated by me so that they could talk to each other.

Speaker 3 41:30

Because it was hard to look at the PANDAS groups nationally because so many of those patients weren't being treated and they were really had no one. They didn't have a doctor who would treat them, so it was very difficult to read those cases. So she started the support group and it was that support group that threw me this surprise dinner in 2018 on the occasion of my 100th patient, and it was extremely nice and there was some wonderful tributes and it definitely gave me the strength to keep going, because I was definitely going against the grain and I was going against the religion of pediatrics, which is, to you know, use very few antibiotics as short as possible. And I was using antibiotics long-term. I was using them in like you would use Prozac or Zoloft. I was using them as psych meds and they knew that I was going out on a limb for them and they were very, very appreciative and it really gave me a good shot in the arm and now I've gone from 100. And, like I said, yesterday I saw my 322nd patient in an evaluation.

Speaker 1 42:31

That's pretty amazing. Yeah, all right, I think I just have one more question, and that's I know you work with a social worker here, right?

Speaker 3 42:44

Yes, well, the social worker really is here as our behavioral health liaison for the entire practice. My practice includes eight providers. We have seven docs and one nurse practitioner and we have this integrated behavioral health program. We started it about five years ago. We're affiliated with Boston Children's Hospital and the PPOC, the Pediatric Physicians of Children's Hospital, which is a group of about 84 practices affiliated with the hospital, all independently owned, and this IBH program is wonderful and we can do warm handoffs, write to our social worker, we interrupt her, we bring her into the room with us, have us introduce her to the patient so she works for everybody. It's not specifically for, it's not at all for my PANS-PANDAS program but, like I said, I integrate my PANS-PANDAS patients into my practice, so they are just my regular pediatric patients.

Speaker 1 43:45

Okay, well, it has really been a pleasure to talk with you, and I, of course, knew that you were treating patients with PANDAS and PANS, but I did not understand how many patients that you had, and I'm really, I'm bowled over. Thank you for doing what you're doing.

Building a PANDAS Treatment Community

Speaker 3 44:10

Well, I wanted to thank you and Tani for running your conference and doing your podcasts. I've learned so much from the three conferences that I went to. There are things that I talk about every day that I learned from the lectures that I heard at your conferences and I've got to meet wonderful colleagues such as Dr Ubi, who I will be doing some poster presentations with my scribe in Chicago at the American Academy of Child and Lens and Psychiatry in October. So I've made some wonderful connections and learned a lot from your conferences. So what you're doing and bringing the Pandas family, the treaters of Pandas, together every other year up in Ports of New Hampshire has been wonderful, and it's great, when you're doing something that's a little bit iconoclastic, to come together with a community of people who are like-minded and it definitely gives you more oomph to go out there and treat more kids.

Speaker 1 45:06

Thank you. Thank you for those kind words and I'm glad to be able to give you some oomph, because you've certainly given me some oomph today. Thank you so very much.

Speaker 2 45:16

You're welcome. This concludes Episode 16 of Untangling Pandas and Pans. Thank you for listening. For more information about Pandas and Pans and the Alex Manful Fund, please visit thealexmanfulfundorg. The content in this podcast is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.