S2 E13: Understanding the Role of a Psychologist in PANDAS and PANS: A Conversation with Dr. Sarah O'Dor

In this illuminating conversation, Dr. Sarah O'Dor—Harvard instructor and Director of Research at Massachusetts General Hospital's PANDAS Clinic—reveals how strep infections and other triggers can cause sudden, dramatic psychiatric symptoms in children and young adults.

Dr. O'Dor paints a vivid picture of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), conditions where infections trigger obsessive-compulsive behaviors, tics, restricted eating, and a host of other psychiatric, cognitive, emotional, somatic, and medical symptoms. Through the compelling case of "Ms. K," a six-year-old who developed severe handwashing compulsions following a strep infection, Dr. O'Dor demonstrates how these conditions often go misdiagnosed as traditional psychiatric disorders.

The conversation explores the critical role psychologists can play in recognizing these disorders and providing effective treatment. Dr. O'Dor describes how cognitive-behavioral therapy can be adapted for these patients, how families are affected by sudden behavioral changes in their children, and how psychologists can support not just the child but the entire family system. Also very importantly, she emphasizes the need for collaboration between mental health professionals and medical specialists—a multidisciplinary approach reflecting the complex nature of these disorders. 

For parents, clinicians, and anyone interested in the fascinating intersection between immunology and mental health, this episode offers a roadmap to better understanding, earlier diagnosis, and more effective treatment. The discussion culminates with reflections on a growing paradigm shift in psychiatry—one that increasingly recognizes the role immune function plays in mental health.

Whether you're a healthcare provider, a parent concerned about your child's sudden behavioral changes, or simply curious about emerging understandings of brain-immune connections, this episode will transform how you think about certain psychiatric symptoms. 

To read the article reference in the podcast, click here.

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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Episode Transcript

Speaker 1 (00:07):
Untangling Pandas and Pans is a podcast about two
little-known medical disorderscharacterized by the sudden and
dramatic onset of symptoms suchas obsessions and compulsions,
vocal or motor tics andrestricted eating behaviors, and
a whole host of other symptomsfollowing a strep or other
bacterial or viral infection.

(00:29):
I have the privilege ofinterviewing some of the top
researchers and clinicians inthis rapidly growing area, known
by various names such asimmune-mediated neuropsychiatric
disorders, infection-associatedneuroimmune disorders and
autoimmune encephalitis, orsimply pandas and pants.
My name is Dr Susan Manful.

(00:50):
I am a social psychologist, theexecutive director of the Alex
Manful Fund and the mother ofAlex Manful, who died at 26
years old due to pandas, adisorder my husband and I knew
next to nothing about, certainlynot that our daughter could die
from it.

Speaker 2 (01:19):
This is episode 13 of Untangling Pandas and Pans,
recorded April 24, 2025.

Speaker 1 (01:29):
Dr Sarah Odor is an instructor in psychiatry at
Harvard Medical School and forthe past five years, has served
as Director of Research at thePediatric Neuropsychiatry and
Immunology Program atMassachusetts General Hospital,
widely known as the PANDASClinic.
This summer, however, she willjoin Suffolk University as

(01:54):
assistant professor ofpsychiatry, where she will
launch the Child and AdolescentBrain and Behavior Laboratory to
further her research into thebiological underpinnings and
treatment of childhoodneuropsychiatric disorders.
Over the past seven years, drOdor's research has centered on

(02:14):
pediatric neuropsychiatricconditions, including obsessive
compulsive disorder or OCD, mooddisorders and PANDAS.
Her work has resulted innumerous peer-reviewed journal
articles and book chapters,including guidelines for
pediatricians on diagnosing andtreating PANDAS, as well as the

(02:36):
effects of COVID-19 infectionand vaccination on children with
PANDAS and PANS, relevant totoday's discussion.
She also works to enhancepsychologists' ability to
recognize and understand theseconditions in clinical practice.
Her contributions to the fieldof psychology and psychiatry

(02:58):
have been recognized by leadingorganizations such as the
American PsychologicalFoundation, the Anxiety and
Depression Association ofAmerica and the International
OCD Foundation.
She is a licensed clinicalpsychologist and founder of
Metro West Psychology, apediatric neuropsychological

(03:21):
practice based in the Bostonsuburbs.
Neuropsychological practicebased in the Boston suburbs.
In her free time you might findDr Odor hiking with her cattle
dog.
I had to look up cattle dog tosee what or how.
I would recognize Dr Odorhiking, and you should do the

(03:41):
same thing.
It's adorable.
She's a taste tester for herhusband's recipes who enjoys
being in the kitchen quite a bit, and if she's not there then
you might find her playingsuperheroes with her son or
coaching her daughter's soccerteam.
Okay, dr Odor, let's getstarted.

(04:02):
Welcome, dr Odor.
It's really nice to have youhere on Untangling Pandas and
Pans and I'm very glad that youare here to talk about the role
of psychologists in the field ofpandas and pans, both in
treatment and in research.

(04:22):
I confess, actually and youknow this that I'm on a mission
to get psychologists moreinterested in this field,
because I think that there areso many ways that psychologists
can contribute and yet so manypsychologists, like physicians,
are not aware of theselittle-known disorders, so

(04:46):
welcome.

Speaker 3 (04:47):
Thank you so much, susan, for having me, and feel
free to call me Sarah.
I've been listening to yourpodcast.
I love learning, even fromcolleagues that I know already
the conversations that they havewith you.
I've learned so much fromlistening to those.
So thank you for having me, andthank you for realizing the
importance of havingpsychologists in this discussion

(05:07):
, because sometimes they do getoverlooked, and so thank you for
making that a priority, becauseI think that's really important
and a great opportunity inexpanding diagnosis and
treatment of these conditions.

Speaker 1 (05:19):
So I think the first step towards getting
psychologists involved in thetreatment of these patients and
support for the family andcaretakers and parents and even
grandparents who have someonewho's suffering from PANDAS and
PANS is to really educate themabout these disorders.
Look like traditionalpsychiatric disorders but

(05:44):
actually the cause or theetiology is different and that
requires a different approach totreatment.
And although traditionalapproaches may also be used,
it's very important, if youunderstand the cause, to treat
that cause as well.

(06:05):
So I thought maybe we wouldstart out by just what is PANDAS
, just in general, and what isPANS.

Speaker 3 (06:16):
Sure, yeah, and these terms can be confusing and also
they sound so much alike.
And so the first, pandas,stands for Pediatric Autoimmune
Neuropsychiatric DisorderAssociated with Streptococcal
Infection, which is why we justcall it PANDAS for short.
And so this would be whenthere's a child before puberty,

(06:41):
there's a time limit for thisparticular diagnosis where they
exhibit a sudden onset ofobsessive compulsive symptoms,
of tics.
They can be motor tics, likemovements of their facial,
there's arms or legs.
They can be vocal tics, likerepeated sniffling, coughing,
even if they're not sick, sayingwords or phrases or both of

(07:04):
those things, or those thingsmight come in an episodic course
where they kind of come onstrong and go away and come on
strong and go away.
And in order to get a diagnosisof PANDAS there has to be kind
of quote unquote a temporalassociation with a group, a
streptococcal infection.
It's not necessarily clearlydefined what the temporal

(07:24):
association is, but for many ofthese patients we see that it's
shortly after they've had aconfirmed strep infection.
And then, similarly, there isPANS.
And so PANS stands forPediatric Acute Onset
Neuropsychiatric Syndrome, andthe kind of cardinal symptoms of

(07:45):
this are either OCD, theobsessive compulsive disorder,
and or restricted eating, andnot necessarily just picky
eating.
This is pretty severe changesto a child's eating where they
have a very restricted diet, tothe point that it can be
concerning for their healthoutcomes as well.

(08:07):
And now for this diagnosis forPANS there's not an age time
frame, and so it can also bediagnosed in adults and it does
not have to follow an infection.
Right, this is to kind ofcapture some of those kids that
we don't necessarily know whatmight have triggered it.

(08:28):
So there might be an infectioustrigger.
It might be something like Lyme, a mycoplasma infection, it
might be kind of anenvironmental trigger.
This diagnosis is much moreflexible, so it's a little bit
more of a gray area.
But because it's grayer, thenthere's also the requirement
that you have to have two othersymptoms that come on abruptly,

(08:51):
as they did when we were talkingabout pandas.
And so these symptoms might bethings like a sudden increase in
anxiety, emotional ability ordepression, irritability,
aggression or oppositionalbehaviors, behavioral regression
like I've seen kids kind ofrevert back to baby talk a

(09:11):
sudden deterioration in theirschool performance.
I've seen kids suddenly looklike they have like a math
learning disability.
There might be motor or sensoryabnormalities.
It might be kind of adegradation of their handwriting
.
It might be suddenly they'revery sensitive to even a feel of
water.
Again, these can look prettybroad.
Or there might be other somaticsigns and symptoms, like

(09:32):
changes in their sleep, urinaryfrequency might increase or the
kids might start wetting the bedeven though they've already
been potty trained.
So again, for a diagnosis ofPANS you would have to exhibit
also at least two of these othersymptoms in addition to either
the OCD restricted eating orboth that again kind of come on

(09:54):
suddenly and are different thanthe baseline of what the child
usually experiences.

Speaker 1 (09:58):
That was very clear, great Thank you.
So, if we think about thedescription that you gave, the
symptoms can occur in a varietyof spheres.
You have the basic criteriathat you described with OCD and
tics and ARFED eating disorder,but you can see symptoms that

(10:22):
fall into somatic issues.
You mentioned sleep.
There's also more strictlymedical kinds of symptoms, like
gastrointestinal issues, maysurface.
So there's a wide variety ofsymptoms that can occur in
addition to the requisitesymptoms that you described,

(10:44):
which is why we call this amultidimensional disorder that
requires a multidisciplinaryteam at least to weigh in on how
to diagnose and how to treat.
You mentioned the acute onset,which is defined various ways,

(11:06):
but it does come on suddenly,more suddenly than your
traditional OCD, for example.
And you also mentioned anotherkey aspect that PANDAS is
associated with strep,associated with strep and PANS,
although the infection or thetrigger may not be identified

(11:30):
correct.
Yes, yeah correct.
Okay, I know you would add thatthe symptoms tend to ebb and
flow.
The symptoms may actually remit, in some cases almost

(11:50):
completely, and then resurface,which can cause challenges in
diagnosis, for example,especially if the patient has
had to wait a long time to getin to see the practitioner.
So it's a complicated disorderand, as you pointed out it's.
I'm wondering what drew you tothese disorders as a clinical

(12:28):
psychologist orneuropsychologist, what drew you
to these disorders?

Speaker 3 (12:35):
I was going through my training in psychology as an
undergrad and then in gradschool.
You know, I've always beeninterested in the why right and
we as psychologists, we oftenget asked this by parents why is
my child dealing with thisright?
Is it my fault?

(12:56):
Is it because of this situationat the school?
Is that, you know, they'retrying to find a reason which we
all would as parents of whytheir child is suffering in this
way.
And the unfortunate thing is,for a lot of instances we don't
know right.
I don't know why your child ishaving these difficulties.
But we can talk about theresearch and, you know, maybe

(13:18):
part of this is hereditary,maybe part of this is situation.
You know those sorts of pieces.
I may be part of this situation, you know.
You know those sorts of pieces,and it was very exciting to
learn about pandas and pansbecause it feels like we're a
little bit closer to answeringthat question than we are for
other things.
And I see that, while we havewonderful things that we can do

(13:42):
as psychologists that can helpmany people, there's still a lot
of work to be done.
There's a lot of people who donot benefit from the first-line
treatments, from the goldstandard treatments.
There's a lot of things thatwe're missing and I think it's
very exciting to have asituation where we're focusing

(14:02):
in many ways on children anddevelopment and putting them as
the priority and saying, okay,what is going on Really, where
is this coming from?
To help inform the treatmentsso that we can not just manage
the symptoms but get peoplebetter, right and heal people in
a way that we have such limitedabilities to do sometimes with

(14:22):
other types of psychiatricconditions.
So it's interesting my firstpatient was actually Kyle
Williams patient.
So I you know, in working withKyle Williams at MGH, even when
I was still an intern at MGH, Iwas assigned a patient for
therapy.
That was one of the patientsthat he was seeing for

(14:43):
psychiatric care and that wasthe first PANDAS patient that I
had seen.
And it was amazing seeing thislittle boy age eight, whose
symptoms would change based onother factors that people would
talk about.
There were not things that Iusually would think to ask or to

(15:04):
learn about a patient, right,like, oh, his symptoms are much
worse this week, it's becauselast week he had another strep
infection, right.
These sorts of things that justweren't part of the way that we
had talked about the psychiatricconditions in kids and I could
actually see this ebb and flowof symptoms.
And now certainly he stillbenefited from the or I hope you

(15:27):
I don't want to give myself toomuch credit I'm hopeful that he
benefited, or looked like hedid, from the psychological care
that I was also giving him intherapy as well.
And there was this otherelement to what was happening
with him that was reallyintriguing to see and I had to
adjust what I was doing as apsychologist.
I had to adjust the way that Iwas working with other health

(15:49):
care providers and ultimatelythen now I've worked with Dr
Williams in research for what,the past seven, eight years to
learn more about this condition.
So that was really kind of thestarting point and give a lot of
credit to this little kid forhelping me to to learn more
about this and really helped meto see where I was going with my
career.

Speaker 1 (16:09):
Actually a light bulb went off.
It sounds like when you, whenyou met this little boy about
what's causing these, thesesymptoms, and how best can I
treat them.
So, yes, different than yourinitial orientation.
So that's a good segue to ournext question.
Knowing about neuroimmunedisorders, or sometimes called

(16:35):
infection associated immunemediated disorders, can lead the
psychologists or otherpractitioners to ask questions
that have generally not beenpart of the assessment.
You said pretty much exactlythat, but they should be.
I mean, once you understandwhat the cause may be, these

(16:58):
kinds of questions should beincluded.
So I'd like to bring in anarticle that you and well, dr
Williams and a few othercolleagues wrote, entitled
diagnosing and treatingpediatric autoimmune
neuropsychiatric disorderassociated with streptococcal

(17:20):
infections, and this drew myattention.
I think I became aware of itwhen it was first published in
psychiatristscom.
The reference to this will beincluded in the text associated
with this podcast online.
As part of this article, youinclude what you refer to as a

(17:42):
case vignette, and it is prettytypical case of a young girl.
You refer to her as Miss K.
She's six years old, and I'dlike to go through that case to
talk to you about how someonewith your background, your
understanding of pandas and panshow they would see this case.

(18:07):
So does that sound okay?
Sounds like a good plan, allright.
So we've got Miss Kay.
She's six years old and I'mreading here that she was in
generally good health but shedeveloped an upper respiratory
infection in the summer beforestarting second grade.
She received a diagnosis ofgripe step infection from her

(18:32):
pediatrician and she was placedon a 14-day course of
amoxicillin typical treatment.
Her sore throat remittedapproximately three days later
after being given the antibiotic, and I think I'll just insert
here that, as a mother of achild growing up, I used to hope

(18:58):
that Alex had strep, if she wasgoing to have something because
it seemed so easily treated, ifshe was going to have something
because it seemed so easilytreated.
And you have the antibiotic andthen it remits and you go on
your merry way.
But I have since learned thatthat is not the case for a small
number of patients.

(19:19):
Ms K would be one of them, butwe don't know that yet in the
story.
So she had this sore throat andwas treated with antibiotics.
She followed the antibioticcourse as prescribed.
Several days after her last doseshe became, and I'll count the
symptoms.

(19:39):
Maybe you can count them withme.
But she became excessivelyworried about germs, so much so
that she would wash her handsuntil they became raw and bled.
At night she began refusing togo to bed until her mother
repeatedly key word promised herthat everyone in the house was

(20:02):
safe.
I imagine the mother did haveto do that, as is written here
multiple times.
Also, she had been pottytrained since the age of two and
a half, but she began toexperience nocturnal enuresis
and related to that.

(20:22):
Her mother reported that newworries or anxieties reported or
surfaced, that she didn't wantto leave the house because she
wanted to be close to thebathroom and, related to that,

(20:43):
she didn't want to attend summercamp because she wouldn't have
regular access to a bathroom orto a sink, I imagine, to wash
her hands.
So her parents became concerned, naturally, about those

(21:06):
symptoms and in particular thatthey might affect her transition
to second grade.
They sought guidance from theirpediatrician.
The pediatrician gave Kayanother rapid strep test which
was negative, and I'll come backto that.
She was referred to forpsychiatric evaluation.
The psychologist that she sawdiagnosed Miss Kay with
obsessive compulsive disorderand began cognitive behavioral

(21:32):
therapy.
So maybe if we could stop there, if that psychologist had been
you and I should make clear thatthis was not your case if the
psychologist had been you, yourcase.
If the psychologist had beenyou what would you have done
differently?
Beginning with seeing those,depending on how you count them,

(21:55):
you know five or six symptoms,red flags that indicate that the
treatment would be very helpfulhere.
How would you have approachedthat case?
In terms of questions?

Speaker 3 (22:04):
to begin with, yeah, yeah, that's a great question.
Yeah, because it's part of ourtypical diagnostic intake, right
, to better understand what thesymptoms are.
And then also, what are thethings that might have
contributed to what was going on.
So I could imagine in Ms K'scase, when they were asking

(22:27):
about the sudden compulsions oryou can call them compulsions,
probably in terms of how she waswashing her hands excessively
Sometimes parents might describethat first as saying, well, she
had been sick, she was worriedabout getting sick again.
There's other things that youcan make accountable for that,
okay.
But I think the things that Iwould be sure to ask about again

(22:51):
, knowing about these otherconditions, are some of these
other symptoms that go beyondjust questioning to try and
figure out if that might be OCD.
So, getting into thosequestions about has she been
sick lately?
Was there a recent infection?
You know that's not part of ourstandard diagnostic interview

(23:12):
but is a really small piece thatI encourage all of the
psychologists when I talk tothem, and not just psychologists
, licensed mental healthcounselors and social workers
and school nurses to ask as wellwhen they're seeing these
symptoms.
And then also the otherquestions about, in general her
physical health, right, havethey been noticing changes.

(23:35):
I mean, we tend to always askabout sleep and appetite, so
that'll hit on some of thosepieces.
But knowing that there are theseconditions like PANS and PANDAS
, I do always ask now about allof those ancillary criteria that
I mentioned at the beginning.
Even though we say you need twoof seven for PANS, we often see
those in kids with PANDAS too,even if they don't have to have

(23:58):
them, and it helps us to give anindication that okay, something
else is going on where weshould get other medical
professionals involved.
So I do always ask are therechanges in terms of their
urination?
Are they asking to go to thebathroom more often?
And sometimes parents will say,oh, I didn't realize that's
what it was, but I notice now atdinnertime they're always

(24:18):
asking to leave the table.
I thought they just didn't wantto sit there and then they ask
the child and the child isworried that they need to go to
the bathroom or feel like theyhaven't fully went no-transcript

(24:54):
.
You know it takes a little bitof work at first, but having
just the guidelines of, okay,I'm seeing a kid that either has
tics or OCD or ARFID, I shoulddefinitely ask about these other
things, just to rule out ifit's something else.
And I would encourage people ingeneral, when they see a new
patient that's presenting withsome type of psychiatric

(25:15):
difficulty, just to cast alittle bit of a broader net, to
kind of think open-mindedlyabout hey, let's just check and
make sure, has there been aninfection lately?
How is their medical health?
Have they exhibited some ofthese kinds of symptoms?
Because if then I had had thispatient and their family say yes
to those, I would have done thenext course a little bit

(25:38):
differently.
Right, as you talk about whatthey would do next, at that
point I would say, hey, let'sget another medical professional
involved, because this might besomething called PANS-PANDAS.
And so then I would eitherrefer them back to their
pediatrician or potentially to adifferent type of medical
doctor.
That again, it kind of dependson the area people are in who

(26:01):
might be mindful of PANS-PANDAS.
They could be a psychiatrist, arheumatologist, an immunologist
, neurologist, and they mightwant to run some additional
diagnostic tests, get some labwork to better understand if
there might be something that'sagain an immunological component
going on, that they mightbenefit from different kinds of
treatment.
And sometimes, even if thosethings don't come back positive,

(26:25):
they might say hey, I do wonderif, even though that strep test
was negative, if they should goback on an antibiotic.
Maybe they didn't cleareverything up, or maybe they
should go on something like anNSAID, a non-steroidal
anti-inflammatory medication, tohelp with these symptoms too.
And then it opens the door tohaving this multidisciplinary

(26:48):
approach.
Whereas the psychologist, I canstill work with them to treat
the symptoms, but then I alsohave a medical team that's
helping to determine what thecause might be and if there's an
infection that needs treatmentas well.

Speaker 1 (27:00):
Wow, Certainly, that approach would have made Ms K's
life and her parents' life alittle bit easier.
Just to elaborate a little bit,your phrase of casting a
broader net, I think, is reallysuch a good one.
You asked about previousinfections, which is great, and

(27:25):
would you ask them about ormaybe it doesn't make sense at
this point would you belistening for the onset of the
manifestation of these symptoms?
Like, did it occur quickly, didit?
Yeah?
Well, I guess that's thequestion.
Well, how was it a quick onset?
Because, by definition, we'reof course looking for an acute

(27:49):
onset of these symptoms.

Speaker 3 (27:55):
Yeah, absolutely, and I'm glad that you brought that
up too, because I think it'sreally important to understand
what the onset look like.
When did they start to noticethese symptoms?
What type of impact was itstarting to have on the child's
life?
Because, again, this wassummertime for this child, so

(28:16):
sometimes you don't notice theimpact as much right away.
So sometimes those abruptimpacts can kind of sneak up on
you a little bit, because thechild is able to do all of the
compulsions without muchdisruption to their lives.
So it's really important tounderstand what it looked like
at the time, what types ofthings they were showing, where
it was impacting them, what theparents were seeing, to get a

(28:38):
better idea of how quickly itwas actually pretty severe.
And if situations had beendifferent, is this something she
still would have reallyinsisted that she needed to do,
even if it was the school yearand it would have made her late
to get to school to wash herhands for the germs?
Would she have still done it?
You know it's likely in hercase, given the severity, the
answer would have been yes, shewould have still done it and it

(29:00):
would have started to disruptgetting to school on time, those
other sorts of pieces.

Speaker 1 (29:04):
So I also think it's important that what you just
said, that there's usually infamilies there, and families are
busy, there's a lot going on.
There's there's soccer, there'slacrosse, there's various after
school activities that are notsport related.
There's a lot going on.
So you may not have picked upas a parent or caregiver, may

(29:25):
not have picked up on on untilthe psychologist or other
practitioner brings it to yourattention.
How about history?
I think you mentioned that aswell.
Is it important to ask thepatient or, in the case of
children, the family, abouthistory, psychiatric or medical
or more traditional medical?

Speaker 3 (29:46):
Yeah, absolutely.
It's important to get anunderstanding of both previous
symptoms that the child mighthave exhibited in the past the
family history of psychiatricdisorders, medical history for
the child, medical history inthe family as well, necessarily
diagnostic.

(30:06):
Yet to ask specifically aboutautoimmune conditions within the
family, because more and morethe research is pointing to that
these kids might tend to havesome type of family history, or
even personal history sometimes,of autoimmune disorders.
And so, again, while notdiagnosed by not diagnostic,

(30:27):
it's certainly an importantelement to understand the story
of what might happen, what mightbe happening with this child.

Speaker 1 (30:34):
Well, you anticipated my next question and answered
it with regard to autoimmuneconditions.
So the course of herpsychiatric condition would have
been different, I'm prettyconfident, had you been the
therapist.
But let's go on.

(30:54):
In this particular case, shebegan second grade and her
teacher noticed that she wasfrequently distracted in class,
brought that to the parents'attention.
The psychologist who was stillworking with her, and the
parents worked out aschool-based therapy program and
made some accommodations withinthe classroom.

(31:17):
So that certainly helped her inthe classroom and in general
she appeared to be doing prettywell until she contracted
another strep infection at thebeginning of winter.
And what happened then is thatshe experienced a sudden
reemergence of the OCD symptoms,and this one was more

(31:44):
complicated, actually fairlycommon in my experience in
talking to parents.
But she feared that whatever herbrother touched was
contaminated and thus sherefused to enter rooms where her
brother had been.
That obviously would greatlyimpact the family, in that the

(32:05):
brother is now part of this andthe whole family becomes a part
of this, either accommodatingher fears or trying to prevent
them from occurring, both ofwhich cause conflict within the
family most likely.
She also began to exhibit astrong aversion to certain foods

(32:25):
and required excessivereassurance from her family that
her food was safe to eat.
That's another one of thesymptoms that you mentioned that
there becomes a differentrelationship with food in some
cases of PANDAS or PANS.
Then the psychologist referredMs Kay to a team including an

(32:51):
immunologist and a childpsychiatrist but it could have
been a psychologist, certainlywho diagnosed her with PANDAS
and they gave her another courseof antibiotics, as you
mentioned, and also began thetreatment with non-steroidal
anti-inflammatory drugs,otherwise known as NSAIDs.

(33:13):
Can you talk a little bit aboutwhy are NSAIDs given in cases
of pandas and pans?

Speaker 3 (33:22):
Yeah, that's a great question.
So part of the hypothesisaround pandas and pans is that
there's some type ofinflammation, right?
So we know that certain partsof the brain, like the basal
ganglia, have been implicated inobsessive-compulsive disorder,
and so part of the hypothesis isthat there's something

(33:45):
different about these kids thatget these strep infections,
where it's affecting themdifferently and then it's
affecting their brains andthere's potential inflammation
happening.
We've been trying to work onneuroimaging studies to better
understand what that looks likeand to kind of pinpoint what's
going on.
That's also kind of in theworks.
But we have found that givingkids anti-inflammatory

(34:06):
medications help their symptomsto subside, which is part of
where this hypothesis comes from.
Right, if you're giving somebodyanti-inflammatory medication
and then it gets better, youknow, potentially there might
have been some inflammationinvolved, and so some of the
NSAIDs have been known to beable to cross the blood-brain
barrier and so they mightactually be providing some
effects in terms of kind ofre-regulating some of these

(34:30):
symptoms.
And actually what we've seen inclinic is, for the kids who
respond to these kinds oftreatments, oftentimes it tends
to be very quick.
We've got some research goingon that shows that the positive
effects of adding NSAIDs toantibiotics is kind of above and
beyond just the effects ofantibiotics as well, because in

(34:50):
that way you're treating boththe infection but also the
immune responses that the bodyhas generated in response to
that infection.
So that's why we think that itmight be beneficial to do these
two in tandem and we'll work onresearch to better provide some
proof around this right, ratherthan just anecdotal notes of
what we've seen in clinic.

Speaker 1 (35:10):
We heard a little bit more about that in the
researchers brunch that we thatthe Alex Manfield Fund hosted
and you attended with 15 otherresearchers the other day when
Dr Williams presented your workand it's it's pretty compelling.
I'm hopeful that you will beable to continue that, and I

(35:31):
would love to to have the AlexManfield Fund support some of
that.
I think well, the results lookvery promising and if we can use
something as relatively benignas an NSAID, I think that that's
a good way to start that that'sa good way to start.

Speaker 3 (35:53):
Yeah, and I just to add to that, I am in particular,
really excited about thepromise of this because I know
you've spoken with otherresearchers and people have
listened to your podcast.
You know have an understandingof, in some ways, the different
types of treatments that areavailable to kids with PANS and
PANDAS.
But what might be reallyexciting about NSAIDs is, like
you said, it is generally prettybenign.
I mean, people hear NSAIDs andthey might not realize that it's

(36:15):
something that they're takingover the counter already as
different types of pain medicine, and so it's something that
parents are familiar with.
They've taken themselves, maybetheir children have taken for
other things.
It's relatively cheap and easyto get and so it also, I think,
gives an opportunity of bridgingthose difficulties in terms of

(36:37):
access to care that you know itcan be so hard to find some of
these really specializedtreatments.
And wouldn't it be amazing ifwe actually had something that
you could get at any drugstore?
That might be helpful.
And I don't want to oversellbecause, again, we don't have
all the research and we don't,you know, it wouldn't be fair to
the kids suffering from this ifwe were going entirely off of
you know anecdotal pieces, butI'm glad that people are

(37:02):
supportive of this line ofresearching because I do think.
I do think it would help notjust kids be able to have
another thing to help treattheir symptoms, but also because
it's one in which the carecould potentially be widely
accessed, to be able to do soand cost efficient.

Speaker 1 (37:20):
Exactly.
I mean, we all most of us atleast have those very treatments
in our medicine cabinets, sovery easy access for everyone.
We're talking about theimportance of identifying
children.
In this case we're talkingabout children who may have

(37:40):
PANDAS or PANS, because it's soimportant to begin treatment
early, begin effective,appropriate treatment early, and
that won't happen if we don'tdistinguish primary psychiatric
disorders from secondary, whatare referred to as secondary

(38:02):
disorders like PANDAS and PANS.
The sooner you begin thetreatment, the better the
prognosis, right?
So let's talk a little bitabout treatment, because I'd
like to get into whatpsychologists in particular have
, what kind of tools they havein their toolbox that other

(38:23):
practitioners don't.
Most psychiatrists don't havethe kinds of tools that you have
in your box.
I think you hinted at thisearlier in your article.
Talks about it why it'simportant to work together
Psychologists who don'tprescribe treatments for

(38:46):
individuals but work withanother medical professional to
prescribe those treatments.
It makes for a greatrelationship.
The psychologist can well dothe kinds of things we're going
to talk about in a few minutesand the psychiatrist can take
care of the more traditionallymedical treatments.
And I say psychiatrist but, asyou mentioned, neurologists,

(39:09):
rheumatologists, infectiousdisease doctors, immunologists
there's a whole range ofdisciplines that can effectively
work in this area, and thenleave the more hands-on kinds of
treatments to psychologists andother types of mental health

(39:31):
clinicians.
So you mentioned, though, interms of treatment, we mentioned
antibiotics, and the rationalebeing that there is an infection
or could be an infection, andif those don't work, then the

(39:57):
treatment is elevated to morecomplex kinds of approaches,
which would be IVIG, rituximaband, if it were possible to find
, plasma for recess.

(40:17):
So what, though, dopsychologists bring into this,
into the picture here, in termsof treatment?

Speaker 3 (40:22):
Yeah, and you've outlined so well that this.
You know, because of thismultimodal approach right and I
think you know this first camefrom the PANS Consortium years
ago that we think about thesymptoms, we think about the
behavioral and psychiatricsymptoms, we think about the
immunomodulatory treatments andthen we think about how to

(40:44):
manage the infections.
And so really, aside from whatwe talked about earlier and
potentially being hopefully avery skilled diagnostician that
can help to identify some ofthese kids, diagnose them and
get them in treatment,potentially with the providers
that can help with theimmunomodulatory therapies and

(41:06):
then managing the infections,then the psychologist can really
be helpful with the behavioraland psychiatric therapies and,
just like with the other typesof therapies, it varies in terms
of how severe the child is atthe time right and what their
needs are.
We know that different types ofpsychiatric treatments, like
cognitive behavioral therapy andunder that umbrella, exposure

(41:29):
and response prevention, can bereally helpful for things like
obsessive compulsive disorderand even the OCD symptoms within
this population.
For kids with tics, we knowthat habit reversal training can
be really helpful, and foreating disorders and things like
ARFID there's also behavioraltreatments that can be really
efficacious.
And so certainly psychologistsand then licensed mental health

(41:51):
counselors and social workerscan help in administering those
types of treatments.
But there's some situationswhere a child cannot necessarily
engage in outpatient explosionresponse prevention treatment
right, given the severity ofwhere they are at the time, and
so there's certainly ways thatthose treatments can be scaled
up as well.

(42:12):
So there's some children thatwill be candidates for more like
intensive outpatient programsaround those psychiatric
symptoms, even residentialtreatment for some children that
are so severe.
But then I think thatpsychologists and those other
mental health care professionalscan also be really helpful with
other aspects of care right,instead of just what we think of

(42:34):
as the typical psychotherapytypes of treatments, because the
advantages that thepsychologists and the other
mental health professionals haveis we can also help work within
the system in a different way.
Within the system in adifferent way, Our treatments
are not just the child takes,not just but that the child

(42:57):
takes a pill, but also that itcan take into account the whole
system that the child is in tohelp them to function when they
are dealing with this reallychallenging condition, and so
that might include gettingneuropsychological assessment to
better understand how they arecognitively functioning at the
time.
Are there certain learningdisabilities.
Are there different types ofsensory sensitivities, those

(43:19):
sorts of things that can thenhelp direct treatment towards an
occupational therapist to helpwith sensory sensitivities,
different types of schoolsupports that the child might be
getting to help with.
If there's different types ofschool supports that the child
might be getting to help with,if there's different types of
almost learning impairments thathave come up in the meantime.
Sometimes I describe this tofamilies as kind of like a fog.
Right, your child has theseabilities still, but there's

(43:41):
different things about thiscondition that are kind of
creating a fog over theirability to utilize them the way
that they usually would in theworld.
So some of these otherproviders can help the child to
access these things in themeantime, whether it be school
personnel helping with supports,occupational therapists, other
types of professionals that way.
And then I think the other partto consider is the family system

(44:05):
and how much this is impactingother people around them.
I'm so glad that you read thepart of the vignette as well
that mentioned how her symptomswere directly impacting her
ability to even be around herbrother.
For Miss K, and even if thesymptoms are not such a clear
line between how it's affectinga sibling.
It is affecting the familysystem in so many different

(44:28):
kinds of ways, and sopsychologists and other mental
health professionals also canserve a very important role in
helping the family to managethose sorts of pieces as well.
So there can be therapists thatwork just with the parents to
help them to understand how tomanage the child's new difficult
behaviors that they'representing with.

(44:48):
They can work with the siblingessentially to help the siblings
learn the way some therapistsare very focused on this how to
help siblings of individuals whoare dealing with medical
conditions.
Think of siblings going totherapists if, like their sister
, has cancer, right, or if theirsister has some type of or
brother has other types ofchronic disorders.

(45:09):
That's pulling a lot of theattention from the family.
It can be really helpful tothink of the needs of the other
siblings and people in thefamily and of course you know
I'm not limiting this to atraditional family, which is
parents and siblings, right, andgrandparents, other types of
caregivers in the system, othertypes of people that this is
affecting as well, because evenif the child is not at the place

(45:29):
that they can take in thetherapeutic supports, there can
be some supports for the systemthat can help the child to
function more manageably andhelp the rest of the family to
function in the midst of timeswhere these symptoms can be
really, really challenging.

Speaker 1 (45:45):
Wow, you covered so much there.
Let me just reinforce some ofthe things that you said.
Again, this is a complicateddisorder that affects many
systems in the body and alsomultiple situations are impacted
by this particular disorder.
So just underscoring that asyou have.

(46:09):
So just underscoring that asyou have, that one size
treatment, one size does not fitall.
You really need to be an astutemental health professional to
recognize all the ways in whichthis disorder is manifesting
itself.
So you learn whichpractitioners you might want to

(46:33):
call in.
Are there stomach aches on aregular basis?
Should we call in agastroenterologist?
Is there constipation on aregular basis?
So should we call in agastroenterologist for that, or
again consult the pediatrician?
So I think you said this aswell.
I didn't share my notes withyou, but we seem to be on a lot

(46:56):
of the same track here.
You really do need to be a veryskilled diagnostician and to do
that I always say that you needcuriosity and you need
perseverance.
That those two qualities in apractitioner whether it be a
psychologist or any other typeof mental health professional or

(47:18):
a physician that those twoqualities are what's needed to
get to the bottom of what'shappening and to understand what
all you should be looking at interms of treatment and the
family I think, as you mentioned, is so incredibly important.
I think we have to remember thatthese symptoms came on suddenly

(47:42):
.
Prior to that, most parents orcaregivers describe their
children as being perfectlyquote unquote normal and healthy
and well behaved and everythingthat you would want in a child.
And then suddenly, withoutexplanation, they're different.

(48:03):
So just to handle that part, Ithink working with the family is
really important part.
I think working with the familyis really important.
And then navigating the medicalsystem and dealing with the
misdiagnoses that are verylikely to occur and the failure
to diagnose at all, and how thatmight feel when you know that

(48:25):
there is something wrong withyour child oh, that there is
something wrong with your child.
The financial impact of thisdisorder is unbelievable.
It's incomprehensible to mostpeople.
I spoke with a parent recentlywho said that their family spent
$91,000 after insurance in oneyear.

(48:49):
$1,000 after insurance in oneyear.
This is a very complex case,but that is a staggering amount
of money and how do you dealwith that?
How do you deal with not havingthe money to pay for the
required treatments?
There's so many differentissues and if I didn't hear them
directly from multiple parentsand patients themselves, I

(49:13):
wouldn't I really wouldn't beable to believe it.
So having someone like you helpthem navigate all of these
problems, I think, is incrediblyimportant.
Now you mentioned cognitivebehavioral therapy and exposure
response prevention.
Could you give us an example ofhow you might approach

(49:36):
something that Ms K had, how youwould use cognitive behavioral
therapy?

Speaker 3 (49:43):
Yeah, so the basis of cognitive behavioral therapy is
that there's a cognitive piecehow we're thinking about things
and the behavioral piece of whatwe do.
And so even for kids as youngas Miss K, the first step that
can be really helpful ispsychoeducation and helping her
to understand what is happeningright.
Especially for someone like herwhere this came on so suddenly.

(50:05):
There can be so many differentexplanations that children can
generate for why this ishappening Right, and it can be
really reassuring to help themto understand hey, this is
something that we have someunderstanding about, Right, we
call it OCD or, you know, in thecase of PANS Pandas, we call it

(50:26):
PANS Pandas.
We've seen this before.
We have some ways that we canhelp.
That just in itself can reallyhelp kids to feel more confident
in themselves, help externalizethis from it being quote
unquote something wrong withthem that they can feel really
bad about, and then helps givethem some hope that the people

(50:47):
around them can start tounderstand them and can help
them, and so it helps with themotivation for treatment and
then for the pieces that canthen get more challenging.
It's about helping the childrento understand what's happening
in their bodies so that theyknow to recognize that it's OCD
versus the thoughts that theyshould listen to.

(51:07):
Because it can be very hardwhen suddenly your brain is
telling these things that don'tseem to make sense to you or to
other people, and so it takessome practice to understand what
those thoughts are, toaccurately identify what OCD is.
So with the younger kids weoften come up with some type of
name for what this is right,this other thing in your head

(51:28):
that's telling you these crazythings, so that then you can
help to learn ways that you canfight back against that right.
And so then it starts to learnskills about how to approach
those types of either thoughtsthat you're getting or the urges
that you're getting that we'recalling OCD.
That are the things that aregetting in the way of your life

(51:49):
and the things you would ratherbe doing.
And then it's about practicingthose things, not starting with
the things that are the mostdifficult, but figuring out a
hierarchy of things that bringon this OCD right, or things
that this OCD looks like.
And so you start with thingsthat are challenging a little
bit but still probably have agood chance of success, right.

(52:11):
So the child then has anunderstanding of what's going on
.
They have their skills to usewhen they're starting to feel
distressed and you try it outand you go for it.
And that might be things likeyes, you can wash your hands,
but you can only wash your handstwo times instead of five times
.
And how do you deal with thatdistress that happens when
you're not able to do it the offive times?
And how do you deal with thatdistress that happens when
you're not able to do it theadditional three times?

(52:33):
And then you get used to seeingthat you survive that distress,
right, you understand what thatlooks like and you get more
confident in your abilities andyour skills to fight back on
those types of things.
And so then you just kind of upthe ante and you keep working
at the ladder to help the kidreach their goals about, you
know, kind of reclaiming theirsense that they have control

(52:54):
over these types of symptoms,Even though sometimes OCD is
like playing whack-a-mole.
I mean, even with Miss K, right, it came up as a different
symptom.
The next time, right, she gotstrep.
Again, it looked a little bitdifferent, it was something

(53:16):
different.
It's also kind of helping kidsand parents to recognize what's
going on, to have the agility toadjust to those different ways
that things like OCD can get inyour way sometimes.

Speaker 1 (53:28):
And they're very effective approaches right.

Speaker 3 (53:32):
Yeah, yeah, it can be really effective, and I think
what's tricky is sometimestiming right that I hear from
some families sometimes of oh,this didn't really work, and
when we talk about it sometimesit was a little bit more of
what's going on with the childat the time, like you alluded to
earlier, that there's so manydifferent treatments available
right, and parents can spend somuch money doing different kinds

(53:56):
of treatments.
There's, fortunately, a lot ofthings out there and it can be
totally overwhelming.
And so I think part of thedifficulty is there's not one
course of what looks best foreverybody, but you know it is a
matter of sometimes the nuancesand working closely with your
providers of what's the besttime to try different types of

(54:17):
things.
When are kids ready for thecognitive piece?
When is it a little bit more ofjust parents learning more
about what OCD is recognizingwhen they're perpetuating OCD
versus when they're helping thekid fight back about it?
So there's different ways thatthis can look for different
families and so it is not goingto work for everybody, but it

(54:39):
can be really helpful and reallyeffective for a lot of kids and
families.

Speaker 1 (54:45):
You touched on so many things With regard to
parents.
They usually have no idea thattheir response to the given
symptom may be actuallyreinforcing it.
So I think you alluded to this.
But a role that psychologistscan play is just enlightening

(55:06):
parents about that can play, isjust enlightening parents about
that so that they can see whatand learn what they can do
differently, so that it's notquote unquote reinforcing the
symptoms.
And I don't mean to suggestthat these symptoms are a result
of parents or anybody elsereinforcing them.
That is certainly not the case.
But there is often a betterresponse to a given symptom that

(55:31):
parents would be glad to know.
Parents and older patients ingeneral are sometimes reluctant
to bring in treatments likeSSRIs selective serotonin
reuptake inhibitors.
Can you talk a little bit aboutwhen those are valuable,

(55:52):
because certainly they arevaluable under certain
circumstances and are part ofthe treatment guidelines from
the consortium.

Speaker 3 (55:59):
Sure, ssris are one of the first lines of treatment
for individuals who arediagnosed with anxiety, with
obsessive compulsive disorder,and so, understandably, as we
think about again with athree-pronged approach, treating
the behavioral and psychiatricsymptoms, it's, I think,

(56:23):
something to consider for a lotof patients.
I think there's sometimes asense that it's a psychiatric
treatment and so there should bea focus instead on the quote,
unquote medical treatments.
Again, they're all medicaltreatments, but thinking about
the source and the causes of it,thinking kind of from a broad

(56:50):
lens and I love the way thatthey thought of this in kind of
the three aspects, so we canthink about how to cover
different kinds of bases of howto best help a child.
I do, and I mean I have seenhow SSRIs can be really helpful
for some children in addressingthe symptoms and it doesn't
undercut the other aspects oftrying to help assist in the
immunological aspects andtreating the infection.

(57:12):
It can be an adjunct piece thatcan really help some
individuals to get some bettercontrol over their symptoms.
Because it's interesting,because even as we talk about
CBT and exposure responseprevention, even in
non-PANS-PANDAS patients ittakes close collaboration
between the psychiatrist and thepsychologist or the other

(57:34):
mental health professionals thatare doing the CBT or ERP to get
a balance of those sorts ofthings, because there's some
kids that are so severe withthese symptoms it is very hard
to be able to engage them in anytype of therapeutic work.
And I have seen patients who areon an SSRI, where it helps to
lessen the severity enough sothen they can engage in the

(57:57):
psychological treatment, thatthey can really work together in
tandem so that kids are bothlearning kids not just kids, but
kids and adults are learningthe skills that can be very
helpful from therapy so thatthey know how to address these
symptoms, but then also theirbrain is working in a way where
they're better able to do thatand learn that.

(58:17):
So it can be a really helpfulcombination that can make
actually both of thosepotentially more effective for
the child.
Again, not for everybody, butresearch shows that for a good
number of individuals thecombination can be really
successful.

Speaker 1 (58:31):
Right.
So one more question about therole of psychologists.
In our correspondence youpointed out to me that some of
the symptoms or concerns that Imentioned can be
reconceptualized, and I wasasking about separation, anxiety

(58:55):
or reluctance to go to school,which is often misnamed as
school refusal, which is, Idon't think, captures at all
what's going on there, except ata very superficial level.
So can you help us think about,well, either separation,

(59:16):
anxiety or reluctance to go toschool a little bit differently?

Speaker 3 (59:20):
Sure, yeah, because I mean you know, oftentimes when
talking to parents about thesesorts of things it gets framed
as you know, as you're lookingfor the different types of
anxiety or doing your thoroughintake.
Separation anxiety questionwould be something like is the
child more afraid of being awayfrom you that you would think is

(59:40):
typical, or do they refuse togo certain places because
they're worried about being awayfrom someone?
Are they having a lot ofthoughts where they're very
concerned about your safety ortheir safety, and so parents
might say yes to those and thenyou can think about in terms of
separation anxiety.
But, like you alluded to, therecan be a lot behind that.

(01:00:00):
Right, there's a lot of thesekids that I've seen with
PANS-PANDAS, where they do havea lot of separation anxiety.
But when you really kind of, Isay, pull back the layers of the
onion on this, it's potentiallysometimes that they're having
intrusive thoughts where there'ssome pieces of where they think
something is going to happen tothem unless their parent is

(01:00:22):
there to do whatever part ofthey need for the compulsion.
So it's more complex in termsof thinking about this is
actually an OCD symptom for themthat their parent is wrapped
into.
Or you have kids where I meangosh, what we've talked about in
terms of these sudden changesthat these kids have to
experience and deal with.
You know, for a lot of kidsthat also makes them cling to

(01:00:46):
things that make them feel morecomfortable, right, cling to
things that make them feel morecomfortable, right.
And so sometimes that can bewhat it looks like in terms of,
you know, not wanting to go toschool and school avoidance,
because there'll be thesituations that come up at
school and they don't know whoto turn to at school for help,
or their symptoms are going tocome up and you know they would
feel much more comfortable ifthey were at home with a parent

(01:01:09):
when those types of symptomscome up.
And so sometimes I think I'veseen kids who have potentially
gotten missed because people say, oh, I don't see OCD or tics or
ARFID here, when really some ofthese other symptoms that
they're showing might really beOCD at its core.

Speaker 1 (01:01:27):
sometimes In some ways you're really a detective,
absolutely yeah, which I hopepiques the interests of other
psychologists.
This is a challenging area, butit's also a really rewarding
area for those who go into it.

(01:01:48):
You can really make adifference.
So we're almost at the end hereand I want to ask you a couple
of other questions.
We've talked about children forthe most part, because it is
children who for the most partexperience and are diagnosed
with pandas and pans, but youngadults and or adolescents and

(01:02:14):
young adults sometimes who areoff on their own.
In the case of my daughter, shewas at college when the
symptoms of pandas she wasdiagnosed as having pandas
because it was related to astrep response, although there
was also mono there too, andshe's older, so someone else

(01:02:35):
might have diagnosed her ashaving PANS.
She was alone, she was byherself, so there was nobody
else looking for those symptoms,and she did tell me about a few
of those over the telephone.
For example, she talked aboutbeing under so much pressure

(01:02:55):
that if someone these are herwords if someone, if something
got in the way between her dormroom and her economics class,
for example, that she would getfrustrated because she had to go
around the truck or whatever itwas that was blocking the
pathway, but what she didn'ttell me until a few years later.

(01:03:17):
She said that you remember Iused to tell you on the phone
how frustrated I would get, andthen I'd have to start
recounting my steps and I said,oh no, you did not tell me that
part.
And she said, oh, I'm sure Idid and I know she didn't.

(01:03:37):
It would have put it into anentirely different category for
me and in her case I think thatit also the symptoms that she
eventually had also manifestedslightly differently than some
of the ways that we're talkingabout now, as it would be not
surprising in an older person,in that she recognized the

(01:04:02):
anxiety that she wasexperiencing in social
situations, for example, andtold me that she knew if she
drank a little more, that thatwould reduce the anxiety, and
Alex was not generally a drinker.
But if I hadn't had a daughterwho expressed what's going on,
and even in the case of havingthis daughter, who was very open

(01:04:26):
, I didn't hear about thecounting steps.
So it becomes really difficultwhen the young adult is not with
you, and I think in her casethe onset was as a young adult.
But even when you have yourolder child going off to college

(01:04:49):
, you're not there to, as theparent or as the caretaker, to
make sure that they are beingmindful of what to do.
If they do have strep, what tobe watching.
Are there any guidelines thatyou would give parents whose

(01:05:11):
children let's make it simple,children who've had PANDAS or
PANS now are doing very well butthey're going off to college.
Are there any guidelines thatyou would provide them?

Speaker 3 (01:05:24):
Yeah, that's a really great question and I think, a
lot of things that people aredealing with that I think.
I think there hasn't beenenough time and effort put in
yet to understand these kidsthat are I still I'm calling
them kids right their kids aretransitioning then to take over

(01:05:54):
their own care, and so I thinkthere's models and other aspects
of medicine and pediatricpsychology that we should pull
more into when we talk to thesekids, because I think,
especially for the individualswho have relapsing and remitting
courses, you know there are asopposed to someone that

(01:06:15):
potentially has type 1 diabetesright where they're dealing with
this every day, and so theyhave to be knowledgeable about
their condition, they have toknow what to look for so that
they know exactly what to dowhen such a symptom comes up,
those sorts of things, when sucha symptom comes up those sorts
of things.
I think there is room forhaving more education with kids
who are susceptible to thesetypes of conditions, so that

(01:06:38):
they understand more of what'shappening in their bodies, what
to look for, what to do if theysee different types of
conditions, because I mean, youknow, these are very smart
individuals and it's hard foranybody to recognize things like
that in yourself, but I think,the more that we can give them
an understanding of okay, theseare the things to look for, the

(01:06:59):
way you look for some other typeof chronic condition that might
exert itself again.
These are the things to lookfor, this is the course to take,
this, you know, talk to yourparents that you stay connected
to your medical professionals,those sorts of pieces.
So I would say, you know, whilethere's many individuals that
once they reach college, theynever deal with this again, and

(01:07:20):
that is fantastic, right,they're unfortunately a subset
of these kids that will stilldeal with these pieces and you
know, I think it would be greatto figure out a plan for them to
say, okay, let's go through theeducation that we had.
Maybe it was when they wereyounger so they didn't fully
understand it.
Let's think about how to prepyou to say remember, this is a

(01:07:44):
possibility, this is what tolook for, this is what to do so
that they have that knowledgebase new in their kind of older
brain.
They can understand it better,they can make these connections
and they're getting moreautonomous and independent.
Help to reinforce and empowerthat and give them the
information that they need sothat they can recognize and help
take care of these things inthemselves as well.

(01:08:05):
And I do want to say that I amencouraged that it's almost like
a generational piece where,unfortunately, you know 20 years
ago the people that would havebeen diagnosed with this there
was so much less knowledge,there was so much less as they
were kind of going intoadulthood Now.
I am so encouraged that I meetso many young adults who have

(01:08:26):
dealt with this at differentpoints in their lives, who have
dealt with this at differentpoints in their lives, and they
are so, I guess, passionateabout helping other people who
have had to deal with this thatI've talked to people where
they've presented in theircollege classes and other people
have spoken up and said, hey, Ihave this too that it's amazing
how I feel like there actuallycould potentially be support

(01:08:48):
networks in this emergingadulthood period of time that we
can also help to build andutilize as well, so, as someone
making that difficult transitionto be able to handle these
types of medical conditions andpsychiatric conditions that they
have independently, that theremight be even more of kind of a
grassroots effort to help themfind the connections to know how

(01:09:11):
to navigate that where they maynot be totally on their own the
way they might have a long timeago, because so many
individuals have had to dealwith this and there might be a
way, even within you know,college campuses or something
similar to help them to be ableto find supports where they're
at and people who understandwhat might be going on and can
help them.

Speaker 1 (01:09:30):
I completely agree with you.
It's radically changed sinceAlex died with her, her symptoms
, which were on the mild side,which in many respects makes it
more difficult to to diagnose.
But the most parsimoniousexplanation was that Princeton
University is a stressful place,as are all college campuses,

(01:09:53):
and so the symptoms that shesurfaced with made sense within
that broad category of pandasand pans the infection part, for
example, and the relativelysudden onset and the lack of

(01:10:15):
history of psychiatric disordersor in her or in her family.
We might have looked at itreally differently, but I agree.
I think that there's there aremany reasons to be hopeful that
it will be much less likely forpeople to slip through the
cracks.
More people need to be educatedgeneral public, physicians,

(01:10:37):
psychologists, everyone.
But it's so much better now.
So that brings me to my lastquestion.
Dr Juliet Medan, who's theco-founder of the Neuroimmune
Psychiatric Disorder Clinic atDartmouth, spoke at the recent

(01:10:58):
dinner that the Alex Manfo Fundhad and you were there and she
spoke about a paradigm shiftthat she sees happening in
psychiatry.
Do you see a paradigm shifthappening in the understanding
of psychiatric disorders?

Speaker 3 (01:11:16):
I do.
Yeah, I'm really hopeful.
I mean, it used to be when Iwould present on this years ago.
Everyone would be scribblingquickly to take notes right,
just even to talk about whatPANS Candles was.
And now I feel like people comeup afterwards and they're like,
oh yeah, I've had a lot ofcases too.
Can we talk through these?
It's very different.
I think that a lot of theeducation has gotten out there.

(01:11:38):
I do think the AmericanPsychiatric Association has done
a nice job in that they dorequire APA approved clinical
psychology programs to havebrain and behavior classes that
everybody has to take.
So there is an educationalpiece in terms of helping

(01:12:00):
psychologists to understand theintegration of, you know, brain
and behavior.
And I think the COVID pandemichas also helped us to see a
little bit about how differenttypes of infections can lead to
psychiatric symptoms and how to,you know, ask those questions
differently and how to helpsupport patients on that.
I do feel like the paradigmshift is happening and people

(01:12:21):
are being open minded aboutwhat's the best way I can
support my patients, right?
I heard somebody say once on aPANS consortium call that you
know, when someone was like, oh,I don't believe in pandas, they
said well, it's not a religion,it's not a do you believe or
you don't believe, and so that'swhat I encourage people to
think of.
It's being open-minded, it'sasking questions, it's being the

(01:12:44):
detective to say what might begoing on with my patient, and
let me not rule out anythingthat could be something that
would have been, or that couldbe, a benefit to them or could
give us another avenue that wemight be able to help address
treatment.

Speaker 1 (01:12:56):
Great, I hope you're right and I would like to
continue our conversation aboutwhat specifically we can do to
help psychologists become moreknowledgeable about this subject
, and I know that there are alot of other psychologists who
are interested and you've beenso informative today and so

(01:13:20):
interesting.
I thank you from the bottom ofmy heart for being here and for
sharing your knowledge.

Speaker 3 (01:13:32):
Thank you very much, dr Adore, thank you very much
Susan for having me and thankyou for helping to promote this
knowledge.
I mean, I think, like you said,this is such the key for so
much of this it's helping topromote the knowledge and the
education.
And so thank you again forseeing the value in the voice of
psychologists as part of thisdiscussion and thank you for all

(01:13:54):
of the work that the ManfulFund has been doing to help
support the research and to helpeducate families and other
providers about this conditionso that, like you said, we can
catch it earlier and then kidscan have a better prognosis
because of it kids and youngadults and then the kids can
have a better prognosis becauseof it, kids and young adults.

Speaker 1 (01:14:11):
Thank you for those kind words and thank you for all
your help, and I look forwardto continuing to work together.
Yes, me as well.

Speaker 2 (01:14:19):
This concludes Episode 13 of Untangling Pandas
in Pants.
Thank you for listening.
For more information aboutPandas and Pans and the Alex
Manful Fund, please visitthealexmanfulfundorg.

(01:14:46):
The content in this podcast isnot a substitute for
professional medical advice,diagnosis or treatment.
Always seek the advice of yourphysician or other qualified
healthcare provider with anyquestions you may have regarding
a medical condition.