April 23, 2025 • 42 mins
What happens when a simple strep throat infection triggers a devastating autoimmune response that attacks your brain? At age 13, Ethan Pompeo's life changed overnight when mysterious motor tics, compulsive behaviors, and overwhelming anxiety suddenly appeared, beginning a two-decade journey toward answers and healing.
Ethan takes us through the frustrating reality of living with PANDAS (Pediatric Autoimmune Neurological Disorders Associated with Strep) – a condition where strep antibodies cross the blood-brain barrier and create inflammation in the basal ganglia. His vivid descriptions of trying to complete simple tasks while battling uncontrollable tics paint a stark picture of the daily challenges faced by those with neurological autoimmune disorders.
The path to diagnosis wasn't straightforward. Misdiagnosed with Tourette syndrome, Ethan became what he calls a "pill guinea pig," cycling through over 40 different medications by age 17, with side effects often worse than his symptoms. This experience fostered a deep skepticism of conventional medicine and pushed him toward finding his own solutions.
What makes Ethan's story particularly compelling is his holistic approach to recovery. Moving to Colorado to work on an organic farm became a turning point, introducing him to lifestyle changes that would transform his health. His discovery that CBD's anti-inflammatory properties – not the psychoactive effects of cannabis – were addressing the root cause of his brain inflammation led to a comprehensive healing protocol combining anti-inflammatory diet, strategic supplementation, strength training, and cognitive behavioral therapy.
Today, Ethan is 95% symptom-free and dedicated to helping others through PANDAS advocacy. His powerful message about accepting his condition rather than hiding it resonates beyond just those with autoimmune disorders: "The day I decided to be open about what I'm dealing with, it's like I felt a weight lifted off my shoulders."
Whether you're battling chronic illness or supporting someone who is, Ethan's journey offers practical insights, scientific understanding, and above all, hope. Follow his continued advocacy work on Instagram @ethan_pandas or visit greenvalleynutrition.com to learn more.
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Episode Transcript
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Speaker 1 (00:00):
The SJ Childs Show is Backwards' 13th season.
Join Sarah Bradford and the SJChilds Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season, we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
Speaker 2 (00:30):
Go to sjchildsorg hey everyone.
Speaker 1 (00:36):
I wanted to take a second to talk to you about the
International Autism Summitcoming up in April April 25th
and 26th.
It's going to be streaming freefrom all of my channels.
If you haven't already gone tofollow me, go to sgchildsorg.
Click on any of the socialmedia icons and go follow me so
(00:57):
that you can be with us at theInternational Autism Summit 2025
, the International AutismSummit 2025, april 25th and 26th
.
Can't wait to see you then.
Hi, I'm SJ Childs.
Join me in building a communityof inclusion.
I'm holding a silent auctionwhere you can bid on unique
(01:18):
items and experiences for autismawareness and our International
Autism Summit 2025.
Every bid helps supportautistic individuals and
families worldwide.
Find out more atsjchildsbetterworldorg.
Hi, and thanks for joining theSJ Child Show today.
(01:42):
We are going to be having awonderful, engaging conversation
today with Ethan Pompeo, andwhere are you from, ethan?
Where are you at today?
Speaker 3 (01:51):
I'm in Charlottesville, Virginia,
Central Virginia.
Speaker 1 (01:54):
Oh, beautiful.
I've never been to Virginia,but I do have some friends that
post pictures all the time.
It's gorgeous when they are.
They are doing that.
So oh it's.
I'm so nice to have you heretoday.
I'm in Salt Lake City, utah, soit's a chilly, rainy day.
Today we had a little snow.
Spring day Utah spring a tulipwith a little snow on it Darn it
(02:21):
.
I'm really excited to talk toyou and thank you for being
flexible with our schedules andgetting here.
Before we start the discussion,tell the audience a little bit
about yourself, introduceyourself and kind of what
brought you here.
Speaker 3 (02:40):
Sure, yeah.
So I, as we were talking beforewe started the recording, I'm a
dad, I've got four littledaughters.
My wife and I we live here inlike the foothills of the Blue
Ridge Mountains and we have moreor less a homestead lifestyle
here started experiencingneurological symptoms that
(03:07):
really wrecked my life and myquality of life.
I started having motor ticslike loss of motor function,
compulsive behavior, OCD, ADHDall these neurological symptoms
that came out of nowhere, and itwas a long, multi-decade
journey to get to where I amhere today and understanding the
cause of all this and how toheal from it.
So that's my message and that'swhat brought me to your podcast
(03:31):
.
Speaker 1 (03:31):
Yeah, and I'm so glad I love to share stories because
I think that we really canlearn so much from another
person's living experiences and,of course, others lived, ones
who have passed on but you know,the those experiences of people
we can relate to and just kindof ideas and and things that we
(03:56):
can really draw from.
I know, in in my journey, evenjust being a podcaster, I've
learned so much in I learnedfrom every single guest you know
, and that is so much to takeaway and I'm so grateful for
that.
So, yeah, let's let's start atthe beginning kind of tell us a
little bit about where the,because I have a 13 year old and
(04:20):
heaven knows I was 13 at onetime and it can be a very
disastrous and like verygrueling place to be in your
life and tell us a little bitabout kind of that onset and
what started happening, andwe'll go from there, there, sure
(04:48):
, yeah, 13 is a tough age foreverybody, right?
Speaker 3 (04:50):
We're becoming an adult in many senses, we're
trying to figure out who we areand form our own path in life.
And to be hit with a chronicdisease like that in the midst
of everything else that's goingon in life, it was traumatic, it
was a lot to deal with, andthen, on top of that, add the
fact that we had no idea whatwas happening or what was
causing this for almost 10 years.
It's an acronym, for it's notthe cute cuddly bamboo-munching
(05:27):
bear that we all are familiarwith.
It actually is a disease calledPediatric Autoimmune
Neurological DisordersAssociated with Strep, and
basically what that means is astrep.
Throat infection, or sometimesother infection causes an
unusual autoimmune response inthe body, namely excess
production of strep antibodies.
(05:48):
Now, antibodies are ourfrontline defense mechanism
against foreign pathogens andinvaders.
Ideally, they're good, right,but when your body produces them
in excess in response to thischronic, recurring infection,
you can start to get problems.
And my problems occurred whenthose antibodies crossed the
(06:09):
blood-brain barrier and enteredmy basal ganglia, which is the
motor cortex of the body, and soI was, in essence, overnight, I
went from being a healthy,otherwise normal teen to being
plagued with these autoimmuneand neurological symptoms like
the motor tics and loss of motorfunction, chronic anxiety, all
(06:34):
these other symptoms that werenot normal, and it was a hard
pill for me to swallow torealize, hey, something is not
right, something is wrong here,my body's not acting the way it
should be, and I dealt withthose symptoms in numerous
respects.
First of all, the physicalmanifestation of the tics was
(06:56):
incredibly frustrating.
I'd have to pick up my phone ormy pencil, then put it down and
pick it up and put it down overand over again until it felt
just right, and sometimes thiswould go on for hours until I
was so frustrated that thedevice would end up sailing
across the room into the wall ofmy bedroom.
And let's just say I got verygood at repairing drywall from
(07:20):
all the damage that I caused.
So, emotionally, I had thisanger and this intense anxiety
and rage and frustration basedaround the symptoms I was
dealing with, and it impactedevery aspect of my life.
The immediate onset of PANDASis very difficult too, because,
quite literally, you wake up onemorning and you have these
(07:42):
symptoms and these ticks andthey only worsened over time as
we struggled to find answers andthe infection and the
inflammation in my braincontinued to fester and get
worse as a result of not findingthe correct treatment.
Speaker 1 (08:01):
It's just an incredible story and I'm so
sorry you had to go through thatand I'm so grateful that you're
sharing this story because foreveryone out there and anyone
that needs you know thisinformation or might have
already experienced this, may gothrough this in the future.
(08:22):
And now you'll know, you knowwhat to maybe look for and we'll
get more into that but what ascary situation to have to go
through, especially, like weboth had said, just going
through teenageism, you know, asa typical and neurotypical
(08:42):
teenager without some type of,you know, immune attack.
Then you know that's it's hardenough, but I can't imagine like
how frustrating that might'vebeen and how confusing and um,
yeah, and, and how hard itmust've been on your family for
(09:02):
I mean your parents to not havethe answers or know where to
find them.
So hard.
What do you?
Where did they start Like?
What kind of misdiagnosis is,if any, did you get, and what?
How did that look?
Cause I think that's reallyimportant to shine a light on.
Speaker 3 (09:24):
Absolutely yeah.
So this was just about 20 yearsago.
This year will be the 20thanniversary of the onset of my
symptoms and I've come a longway.
Clearly, I'm sitting here now.
You wouldn't know that I hadthese issues.
They still impact my life, butin a very minute sense compared
(09:44):
to the way they used to plaguemy life.
I've learned many ways to copeand overcome with this, and
we'll talk about that as well,but in the early days we didn't
know what was going on.
I remember I started havingthis fit of ticks in the
bathroom as I prepared forbedtime.
(10:04):
I started having this fit ofticks in the bathroom as I
prepared for bedtime.
I was brushing my teeth andsomething was wrong and I kept
just banging the toothbrush onthe countertop over and over
again and I couldn't get myselfto stop.
There was toothpaste sprayingon the mirror and I started to
exhibit like the classicTourette's syndrome response of
cursing and swearing and ragingaround.
And my dad came in the bathroomand said Ethan, like dude,
(10:26):
what's going on?
This is not like you like.
Something is clearly wrong.
We need to address this.
And so we scheduled anappointment with with my
pediatrician and he referred usto a neurologist, because this
was outside of his area ofexpertise, and and so we
actually traveled out of stateto visit this neurologist, and I
remember in the car thinking,oh you know, this neurology guy
(10:47):
is going to tell me what's wrong, he'll get me on the right path
and everything will be good.
That is not what happened.
I was told I had Tourettesyndrome, which really didn't
give us any answers.
We didn't know what caused it,we didn't know how to treat it,
we didn't know the cure oranything.
So, in effect, the diagnosis ofTourette's syndrome was more or
(11:09):
less a label that I was givento prescribe me drugs, and so
that's exactly what happened.
Within 10 minutes or less, wewere in and out of his office
and I walked away with aprescription for this blood
pressure medication that hadbeen shown to sometimes reduce
tremors and ticks, and so beganmy journey as I refer to.
(11:29):
I was like a lab rat.
Speaker 1 (11:31):
A guinea pig.
Yeah right, exactly the pill,guinea pig.
Exactly, I went through that.
Speaker 3 (11:37):
Oh, it's not fun.
I mean, by the time I was 17, Iwas on and off more than 40
different prescription meds.
None of them helped Like theside effects outweighed the
benefits of all these meds.
And I ended up feeling worse bytaking many of them Absolutely.
Speaker 1 (11:58):
I can't imagine.
Well, I mean, I kind of didn'thave that experience but had a
lot of like misdiagnosed or for,probably, female autism, now I
know.
But back then, you know, it waslike, oh, you're bipolar here,
let's put you on this.
(12:19):
Let's let's put you on thisbirth control's, put you on this
birth control, this birthcontrol, this birth control,
this birth control.
And I wasn't doing anythingthat I needed that for.
Uh, they were just trying tocontrol moods and other things
like that, and it was just likethis massive overload of nasty
medicines and it's just crazy Ican't imagine the hormone
(12:42):
imbalance that that treatmentwould cause it.
Speaker 3 (12:44):
Right, I mean the side effects of these things
that I feel like the physiciansoften don't even consider the
the adverse effects that couldcome with trying these
medications.
Speaker 1 (12:54):
You know, it's crazy oh, man, let's talk about the um
, the over, kind of how you didovercome some of these
challenges while you were goingthrough it, kind of how you
managed them, things like that,and then we'll talk about how we
finally got to the end of thatin a little bit.
Speaker 3 (13:19):
Yeah.
So I've always been a go getterno-transcript and I told my
(13:53):
parents like look, I am on drugs.
These medications are terrible,and I think it was that use
model of substance reliance andsubstance use that led me into
an ideology that this was theway to treat things.
And honestly, in my opinion,the pharmaceutical experience
(14:17):
that I had was the gateway drugto moving into illicit
substances.
And so, being a young teenager,I was seeking out anything that
could give me relief, andduring high school I tried
cannabis and I remember thefirst time I smoked I
immediately felt like this senseof relief and calmness and you
(14:39):
know I never go on anybody'sshow to condone cannabis use
because I don't think that is agood solution for for most
people, uh, especially kids andteenagers, um, but nevertheless,
that was the only thing I found.
That was like my only tool thatI had at the time to help me
feel better and give me somerelief.
So I relied on that for manyyears and, like I come from a
(15:00):
conservative family, like myparents busted me I don't know
how many times for smoking andit was.
It was not a fun place to be.
I remember one time I came homefrom cross country practice and
my dad.
He probably smelled it on meand said you know, ethan, have
you been smoking?
And I said why are you askingme this, dad?
(15:20):
And he said, well, you're justso calm, you're like relaxed,
you don't?
You're not having any tips.
And I'm like dad, like yeah,you just answered your own
question, like do you see whyI'm doing this?
And so the light bulb kind ofwent off in his mind like oh man
, he's not just trying to party,like this is actually something
he's using, um trying to usemedicinally.
(15:42):
Like this is actually somethinghe's using, um trying to use
medicinally.
The problem is I didn't knowwhy it was helping me, and this
was before we got the PANDASdiagnosis right.
I still really didn't even knowwhat was wrong with me.
I just knew that when I usedthis substance it helped me and
after going on and off all thesemeds, it was like this is the
answer.
Yeah, so I went through that,uh, that lifestyle for many, for
many years, experienced all thenegative consequences of that,
(16:05):
including trouble with the law.
I had paranoia and anxietyassociated with my use to the
consistency of the material, andthe medicine that I was getting
was lackluster.
You know, sometimes it wouldhelp me and other times it would
make me feel more anxious.
Other times it would put me tosleep, and then the people I was
(16:26):
hanging out with as a result ofthat lifestyle was not great
either.
So I really needed a reset, andit was actually after college.
I went through a five-yearundergraduate program and
actually got my degreeCongratulations, thank you.
Yeah, it was still to.
This day is probably thehardest thing I've ever done,
(16:46):
but I did do it.
The day after college, I movedto Colorado.
I got a job on the oldestorganic farm in the state and I
just started growing watermelonsand carrots and everything
except cannabis.
Basically we grew, but I Imoved out there really
(17:07):
pragmatically because I didn'twant to get in trouble anymore.
I just wanted to do what I knewwould help me and live a
carefree lifestyle.
You know, I still hadresponsibilities on the farm,
but it was nothing like what Iwas used to, with assignments
being due and everything likethat.
I was was working outside.
I was breathing fresh air,drinking clean water, eating
fresh farm produce.
I was doing physical laborevery day.
(17:30):
There was very little stress oranxiety or pressure on me and I
just fell in love with thatlifestyle.
And it was actually there inColorado that I was introduced
to CBD, which is one of manyactive components of cannabis
that I call nature's mostpowerful anti-inflammatory.
And knowing what I know nowabout pandas and how the strep
(17:51):
infection causes this braininflammation, the pieces of the
puzzle started to come togetherin my mind and I realized what
was actually helping me was notbeing high, it was not getting
the THC, the psychoactivecompound in cannabis.
It was actually the CBD in thisplant that was relieving the
inflammation in my basal ganglia, relieving my symptoms and
(18:14):
helping me to feel better.
It was actually addressing theroot of the cause instead of
just masking my symptoms pause,instead of just masking my
symptoms.
So in addition to that, Irealized that CBD could be taken
orally or applied topically.
So I didn't have to smoke,right, I didn't have to deal
with the psychoactive, I didn'thave to be intoxicated any
(18:35):
longer, I didn't have to carryaround an illegal substance.
So it was like an answeredprayer for me because I got that
relief I needed without any ofthe negatives, and so that was
kind of like the catalyst to mylifestyle change.
You know, I'm sure when youdeal with any kind of chronic
illness, neurological illness.
(18:55):
It's very difficult to makechanges when you're stuck in
those symptoms.
And dealing with motor tics.
I'm physically stuck in thesesymptoms.
You know, I'd come home fromschool just trying to like push
everything to the side andignore my symptoms, and the last
thing I wanted to do is liketalk about this with my family
or go see a doctor.
(19:16):
I had physician fatigue, I wassick of doctors and pills and
pharmacies and all this stuff.
I just wanted to ignore it, andso I really didn't make any
progress from that whole timefrom high school to college, and
so it wasn't until I foundsomething that helped me,
without the side effects,without the health risks, that I
(19:36):
was able to take a step backand take a deep breath and
refocus and think, okay, likewhat are areas of my life that
need to change?
And after working on the farmand experiencing that lifestyle,
I learned a lot about myselfand the things that that helped
me.
Speaker 1 (19:52):
I love that and I do appreciate what you said about,
um, you know, not condoningsmoking, but it is.
This is your story and yourexperience, and so I really
appreciate you sharing it withus, and I think it those that
are interested in are curious,which you all should be.
This is the type of informationthat you can look into to see
(20:17):
if it will work for you and ifit's good for for the you know
things you might be goingthrough.
I think that it's wonderful tohave more resources than less
resources available to you.
Let's talk about what thepandas diagnosis looks like and
a little bit more kind ofinformation about that for our
(20:42):
listeners so that they can kindof grasp their mind around that.
Speaker 3 (20:47):
Yeah, so PANDAS diagnosis is a clinical
diagnosis.
There's no quantitative bloodtest or anything you can take
that says you have this right.
It kind of like manyneurological disorders.
It involves putting togetherthe pieces looking at your
medical history.
It involves putting togetherthe pieces looking at your
medical history, your history ofinfection in the past, taking
blood work, looking at yoursymptoms and analyzing all this
(21:12):
and putting the pieces togetherand determining the cause and
effect relationship.
And that's how PANDAS isdiagnosed.
And, like 20 years ago when Ifirst started having my symptoms
, no one had even heard ofPANDAS.
I mean, it was not on thedoctor's radar at all.
So it was very, very difficult.
A lot has changed since thenand I work with several
(21:32):
organizations to promoteawareness and advocate for
PANDAS so that it's easier todiagnose and treat, and I'm very
encouraged by that.
I was just on a call with aPANDAS advocacy group earlier
this week and that's exactlywhat they said.
Like today people don't have togo a decade without knowing
what's going on.
Like oftentimes you can go totwo, one, two, maybe three
(21:54):
doctor's appointments before youfind someone who is experienced
and knowledgeable in thisenough to identify it and get
you on a treatment protocol.
And that is the key to makingprogress in this Because, like I
said, when you're misdiagnosed,you don't even know where to
begin.
You have to know, like, what iscausing these issues in order to
address it.
(22:14):
And so, with PANDAS, thetypical treatment protocol is a
two-pronged approach.
One you have to address thesource of infection.
So in my case it was a strepthroat infection.
So getting rid of that nippingthe strep throat bacteria in the
bud, getting rid of it isparamount because you don't
really have a fighting chance ifyour body is still fighting off
(22:36):
that pathogen that's causingall the problems.
So the first there's many waysto deal with this and physicians
have different opinions on it,but typically long-course
antibiotics is the protocol, youknow 60, 90-day therapy, even
longer, in order to get rid ofevery trace of that bacteria in
your system so that you canstart fresh.
(22:57):
And the second prong to thisapproach is to address the
source of inflammation.
And the second prong to thisapproach is to address the
source of inflammation.
So, now that you've gotten ridof the strep bacteria, you want
to address that inflammation inthe brain that's causing all
these symptoms.
Pandas is also known asautoimmune encephalitis, so
brain inflammation caused by theimmune system.
So again, when you're fightingthat strep bacteria, your body
(23:20):
is continuing to produce theantibodies that are causing the
inflammation.
So, first off, getting rid ofthat infection and then
addressing the inflammation isyour pathway to healing, and
there's lots of different waysto do that.
Speaker 1 (23:33):
Yeah, and I think that finding what solutions work
best if you are in thissituation is best for you.
I mean mean, tell us about someother solutions and I I love
that the, you know the cbd worksbest for you.
What have other support groupsor other advocates that you've
(23:54):
met along the way?
What are some of their uhadvice that they might give?
Speaker 3 (23:59):
or you know what I'm trying to say there's other
treatment options available, butthe jury's still out.
I mean, there just is notenough research on this and
that's why, like uh, actually,in two weeks we have our annual
5k fundraiser with the alexmanful foundation.
Who, uh, susan manful, is likean incredible advocate for
(24:20):
pandas in this community.
Her daughter had pandas as well, and we've just we have this
dinner in Washington DC followedby a 5K fundraiser, and we've
done so much work in advocatingfor this and making progress and
educating physicians, and so,again, we know a lot more about
this now than we did previously.
(24:41):
But there are bloodtransfusions that have worked
really incredibly for somepeople and then not really
worked at all for others.
I never actually went throughthat treatment because at that
point I was just done.
I was done with all theconventional medicine and the
last thing I wanted to do is sitin a hospital bed for three
(25:03):
hours with an invasive procedure.
So that wasn't for me.
But what I have found is justfocusing on an anti-inflammatory
lifestyle, and that's withregards to exercise, diet and
supplementation mainly, and manyof these things are, you know,
we should all be doing themquite honestly Like I was living
(25:25):
a very sedentary lifestyle.
I was eating the food from thedining halls.
I was snacking all the time.
I was probably eating too muchsugar, probably drinking too
much alcohol, all these thingsthat were just making the
problem worse.
And so you know I don'trecommend any specific diet or
anything, because we're alldifferent.
But what I can recommend iseliminating processed foods,
(25:45):
eliminating sugar and alcoholand empty carbs that cause
inflammation, focusing on ananti-inflammatory diet.
I believe the food we eat isour primary medicine, so you
can't just eat junk andinflammatory foods and then wash
it down with a pill and expectyour problems to go away.
Speaker 1 (26:03):
That's just not how it works.
Thank you for saying that.
Thank you, I mean, that is thetruth, you, it's really.
That's really.
That's a hard pill to swallowfor people, but isn't?
That is the dang truth rightthere.
You can't just expect amedicine to change your
(26:23):
lifestyle Like.
You've got to make the steps onyour own, you've got to be
disciplined, you've got to haveenough self love to do it for
you know, do it for yourself.
Number one.
Um, that's it Right.
Speaker 3 (26:36):
So purpose was not great.
But, for example, when you havea strep throat infection,
antibiotics can absolutely help.
So I did rely on certainmedications for my healing, but
today I take zero pills, I don'ttake any medication.
I don't smoke, I'm completelyoff all that stuff because of
(26:59):
the changes I've made in my life.
And so number one is diet.
Just analyzing your diet andwhat you eat throughout the day,
intermittent fasting, can behelpful.
There's lots of tools that youcan use that cost you nothing,
basically, that we should all beutilizing.
Um and kind of a parallel tothat.
Uh, exercise, like getting offthe couch and getting in an
(27:22):
exercise routine, is so critical, and for me in particular,
weightlifting and strengthtraining has been integral to my
healing journey, and not notjust because, like I'm exerting
energy at the gym, I look better, I feel better, right, I'm
stronger.
All those things are more orless side effects of
weightlifting.
But my functional medicinedoctor has actually gone back
(27:44):
and examined my journey and hehas said that muscle mass acts
as a sink for eosinophils, likeinflammatory compounds,
cytokines, antibodies thesecompounds that are causing the
inflammation in my brain.
At the time when I wasstruggling the most, I was very
(28:05):
underweight.
I was like skin and bones.
I was running in high schoolbut not really doing much
exercise in college and theantibodies had nowhere to go, so
that's why they kind of enteredan area where they didn't
belong, which was my brain.
By gaining almost 60 pounds ofmuscle mass over this past few
(28:25):
years from working out andexercising, I have built all
that muscle mass which acts.
It basically gives theantibodies a place to go.
So not only has that musclemass diluted the effects of on
my body, of the antibodies on mybody, because there's more of
me, but it's actually has giventhem a place to go other than
(28:45):
into my brain.
So that's been very helpful, ifthat makes sense.
Speaker 1 (28:49):
Absolutely Now, without sounding uneducated and
which I am about this, so Iguess it's okay Is?
Is it curable?
Is that even like politicallyokay to say?
I didn't want to just be very,you know, respectful and
sensitive, but that is that.
That probably is a questionthat people might be wondering.
(29:11):
And what does that look like?
Speaker 3 (29:13):
Yeah, no, it absolutely is.
And I, I tell people, you know,I still deal with the impact of
pandas on my life.
I still have certain minor tics, I still have some compulsive
thoughts, which we probably alldo to some extent, and so I
still deal with the impact ofthat on my life.
However, it's minute comparedto what it used to be.
Like you know, I don't have therage or the anger anymore at
(29:37):
all.
Everything's very controllable.
And so, while I'm not 100% cured, I like to say I'm 95% cured
and an amazing quality of life.
I've learned to cope and livewith it in a way that doesn't
bother anybody, and wheresitting in church or a lecture
hall previously would have beennearly impossible for me, now I
(30:00):
do it, I have no problem.
Like going to this fancy dinner, uh, in a couple of weeks, I'm
not nervous about that at all.
Like it's going to be a goodtime, I can look forward to it.
Um, you know, I've got a family.
Now I'm, I'm running a business,which is amazing, and so, uh,
there there's ways to manageyour symptoms, even if they're
not completely gone, in a waythat makes your life very
functional and fulfilling, andso there are many people who
(30:24):
have been completely cured aswell as a result of using these
tools we're talking about overtime, and one of them that's
very helpful is CBT cognitivebehavioral therapy.
You can actually retrain yourbrain to respond differently to
these external stimuli, whetherit's like for me, it was
coughing and sniffing and theseaudible noises in the background
(30:46):
of these lecture halls andlarge gatherings that absolutely
drove me crazy.
I don't know what it is, butwhen I hear these noises, my
brain signals my body to startdoing these ticks and it's like
a relief of that anxiety that'screated from the triggers, as we
call them.
So what I've done is I usecognitive behavioral therapy to
retrain my body's response tothese triggers, using deep
(31:09):
breathing exercises and justforcing myself to ignore it and
push it out, and over time, whatseems like it would be
impossible becomes very possible, and so I've actually mitigated
many of these tics andcompulsions and symptoms over
time by using cognitivebehavioral therapy.
(31:30):
And what's really interesting isthat there's actually clinical
data that shows CBD can be usedin conjunction with CBT.
They're symbiotic.
I did immunotherapy in the formof allergy shots as a teenager.
I had bad allergies, probablyas a result of inflammation as
well.
(31:51):
What they tell you when you goin to get your allergy shots is
to take an antihistamine.
They always ask you when you gointo the office have you taken
your antihistamine?
And the reason they ask you todo that antihistamine is an
allergy medication.
The allergy medicine reducesthe risk of major side effects,
(32:13):
anaphylaxis, a negative reactionto the injection.
So in a sense, like you go inthere, the antihistamine doesn't
interfere with the results ofyour immunotherapy.
You're still building toleranceup against those allergens.
You're still improving yoursymptoms and teaching your body
to be more immune to theseallergens.
But the antihistamine makes ita little bit easier so you don't
(32:40):
end up in the hospital or havemajor swelling or any of these
other issues.
And the reason I bring that upis because CBD acts the same way
with cognitive behavioraltherapy and cognitive training.
I take CBD before my CBTsessions and it takes the edge
off.
It helps me feel less anxious.
It makes everything easier andsmoother.
So CBT is very difficult.
You're retraining your brain,you're telling yourself to do
(33:00):
something that's uncomfortable,intentionally, and it's very
difficult.
But taking CBD can actuallymake things a little bit easier
and take the edge off, andthat's been studied in clinical
trials.
But that's something Iexperienced just anecdotally,
just by using it and noticingthe effects.
So it's really cool to havethat validation through clinical
(33:21):
trials.
But CBD is not the onlyanti-inflammatory that I use.
I take quercetin and vitamin D,a powerful flavonoid that has
anti-inflammatory properties.
I take curcumin, like turmeric,as well.
So, and then in combinationwith an anti inflammatory diet,
(33:43):
all of those compounds have donea very fantastic job of
reducing my inflammation andhelping me to feel better.
Speaker 1 (33:50):
I love that and I'm really really glad that we made
this connection and got to havethis conversation, ethan,
because I really once againlearned so much from you.
Thank you so much for forbringing all of this to my
audience and to me, and, um, Ifeel really grateful to be able
to share now this knowledge andand share that with people.
(34:12):
Um, two things before you knowwe leave, I want you to tell
everyone where we can find youto to hook up with you or to
have you on their podcast orjust ask questions if they might
have any.
And then don't let me not getthat information for that dinner
(34:33):
and everything, cause I'd loveto share it with my network and
share it with people that mighthave that same interest.
I know a family that is inMaryland that their daughter I
think she's like 21 is reallyhas just barely had a pandas
diagnosis as well, and I want toshare this information with her
family for sure.
(34:54):
So I'd love to do that.
Speaker 3 (34:57):
Yeah, please do that's.
That's wonderful.
The 5k is such an awesome event.
I mean it's just a wonderfulplace to connect with people who
have walked this journey andare walking this journey.
I mean there's people of allstages of life and of their
healing journey at this eventand just a wealth of knowledge
and experience and people whojust want to connect and reach
(35:18):
out to you and do this walk lifetogether right.
So I think it's great.
I've built an awesome communitythrough this organization and
others, so I'll definitely sendyou that.
You can find my information.
My website isgreenvalleynutritioncom.
My story is on there.
You can learn more about mybusiness and what I do on there.
(35:40):
I also have Instagram.
It's Ethan underscore pandasand I post all kinds of fun
lifestyle content on there Farmlife, motorcycles, kids, all the
stuff that I do.
I will say I used to be veryashamed to talk about this.
I was unwilling to talk aboutthis.
(36:01):
I didn't want people to knowwhat I was doing.
Yeah, perfect.
I would encourage people, justlike you're saying, be open and
honest about what you're dealingwith, regardless of if it's
pandas or autism or anythingthat you're dealing with in life
.
Bottling it up and trying tofight it yourself is a losing
battle.
(36:22):
The day that I decided to beopen about what I'm dealing with
, it's like I felt a weightlifted off my shoulders, Like I
didn't have to bear this alone.
I thought that I was honestlylike a freak, like I thought I
was the only person dealing withthis.
I thought I was all alone andthat people were judging me and
they would ask hey, man, are youokay?
(36:43):
And I, I just got so upset.
Um, learning to just be okaywith that and say, yeah, I'm
okay, I have these tics, yada,yada.
I mean it's like the questionsare qualmed immediately.
Like, instead of worrying if Ihave a seizure or if I'm going
to you know keel over, they'relike oh, he's got these ticks,
all right, whatever.
And for a long time I didn'twant to be the kid who, like,
(37:03):
had ticks or was twitching, butlike it's okay and just
admitting that and accepting itthat's your pathway to healing,
like being okay with yourselfand talking about it.
Now you've given an opportunity.
You've given yourself anopportunity to connect with
(37:27):
others who can relate to you andalso, you know, potentially
help them along their healingjourney too.
So now, if you go to my website, you'll see at the top my logo
is a panda, and so I've justembodied that as who I am.
And it's just been, it's justbeen so nice.
Speaker 1 (37:34):
So that's what I encourage everyone to do.
I love that so much.
Is there like a national orinternational website or a site
that people can go to to getinformation on pandas?
Speaker 3 (37:48):
Yeah, there's a few.
So the Neuroimmune Foundationwebsite is a great resource.
I you know I work with theirorganization as well.
There's also ASPIRE A-S-P-I-R-EAspire Network.
It's run by a woman who's agood friend of mine as well and
she has.
Her website is amazing.
(38:09):
It's got all the informationyou would want to know about
PANDAS and how to get diagnosedand what a treatment protocol
looks like.
And if your doctor isunfamiliar with this, first of
all I would point them to theseresources as well, and then I
would.
Is unfamiliar with this, firstof all I would point them to
these resources as well, andthen I would seek out somebody
who is knowledgeable andexperienced in treating this in
order to get a diagnosis quicklyand get on your path to healing
(38:30):
, because the longer you letthis go unaddressed, the harder
it is to climb out of that hole.
So getting that diagnosis andtreatment protocol soon is very
important.
Speaker 1 (38:43):
Oh, ethan, it has been such a pleasure to talk
with you and I hope that we canfollow each other on socials and
stay in touch in the future.
I'd love to hear more about youknow the events that you're
going to, and I love that you'rebuilding and adding to this
(39:03):
community because, if there'sanything I know, more building
community is so important.
There's no need to feelisolated, there's no need to
feel alone.
There's at least one otherperson in those you know 8
billion people, 9 billion peoplein the world that can relate
and help you not feel likeyou're going through something
(39:27):
by yourself.
So please reach out.
Please reach out to me anytimeif you have any questions or
want to be a guest on thepodcast or want to reach out to
any of my guests, and, as always, it's just such a wonderful
time to get to know you and makethis connection with you and
(39:47):
now just so much to look forwardto in the future.
Speaker 3 (39:51):
Yeah, thank you so much, sarah.
Speaker 1 (39:53):
Yeah, absolutely.
We'll have to have you back onto do a homeschooling episode
and talk about our our funthings that we put together for
our kids.
So thank you so much.
We'll, we'll definitely be intouch.
Speaker 2 (40:25):
In the heart of the city.
She's shining bright.
Oh yeah, stories of love andcourage All throughout the night
, her voice resonating An anthemfor all.
Through trials and trials, sheanswers the call.
Her mother and her fighter,breaking barriers and stride
with love as her guide.
(40:46):
She'll never hide.
She's changing the world foryou with the heart that speaks
in strong Melody In a journey weall belong.
Followers gather Like stars inthe night.
So bright, 44,000 voicesSharing in the light.
(41:10):
She stands for family Advocates.
The more Movement of compassionWays we'll soar.
Podcast together Symphony ofsupport In life Changing report.
(41:35):
Thank you, we all belong to hereyes.
A vision clear.
Together we rise, sheddingfears.
In every heart, she plants theseed of understanding and love
(42:05):
for dearly me.
She's changing the world foryou.
We'll see you next time.
The SJ Childs Show is Backwards' 13th season.
Join Sarah Bradford and the SJChilds Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season, we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
Speaker 2 (00:30):
Go to sjchildsorg hey everyone.
Speaker 1 (00:36):
I wanted to take a second to talk to you about the
International Autism Summitcoming up in April April 25th
and 26th.
It's going to be streaming freefrom all of my channels.
If you haven't already gone tofollow me, go to sgchildsorg.
Click on any of the socialmedia icons and go follow me so
(00:57):
that you can be with us at theInternational Autism Summit 2025
, the International AutismSummit 2025, april 25th and 26th
.
Can't wait to see you then.
Hi, I'm SJ Childs.
Join me in building a communityof inclusion.
I'm holding a silent auctionwhere you can bid on unique
(01:18):
items and experiences for autismawareness and our International
Autism Summit 2025.
Every bid helps supportautistic individuals and
families worldwide.
Find out more atsjchildsbetterworldorg.
Hi, and thanks for joining theSJ Child Show today.
(01:42):
We are going to be having awonderful, engaging conversation
today with Ethan Pompeo, andwhere are you from, ethan?
Where are you at today?
Speaker 3 (01:51):
I'm in Charlottesville, Virginia,
Central Virginia.
Speaker 1 (01:54):
Oh, beautiful.
I've never been to Virginia,but I do have some friends that
post pictures all the time.
It's gorgeous when they are.
They are doing that.
So oh it's.
I'm so nice to have you heretoday.
I'm in Salt Lake City, utah, soit's a chilly, rainy day.
Today we had a little snow.
Spring day Utah spring a tulipwith a little snow on it Darn it
(02:21):
.
I'm really excited to talk toyou and thank you for being
flexible with our schedules andgetting here.
Before we start the discussion,tell the audience a little bit
about yourself, introduceyourself and kind of what
brought you here.
Speaker 3 (02:40):
Sure, yeah.
So I, as we were talking beforewe started the recording, I'm a
dad, I've got four littledaughters.
My wife and I we live here inlike the foothills of the Blue
Ridge Mountains and we have moreor less a homestead lifestyle
here started experiencingneurological symptoms that
(03:07):
really wrecked my life and myquality of life.
I started having motor ticslike loss of motor function,
compulsive behavior, OCD, ADHDall these neurological symptoms
that came out of nowhere, and itwas a long, multi-decade
journey to get to where I amhere today and understanding the
cause of all this and how toheal from it.
So that's my message and that'swhat brought me to your podcast
(03:31):
.
Speaker 1 (03:31):
Yeah, and I'm so glad I love to share stories because
I think that we really canlearn so much from another
person's living experiences and,of course, others lived, ones
who have passed on but you know,the those experiences of people
we can relate to and just kindof ideas and and things that we
(03:56):
can really draw from.
I know, in in my journey, evenjust being a podcaster, I've
learned so much in I learnedfrom every single guest you know
, and that is so much to takeaway and I'm so grateful for
that.
So, yeah, let's let's start atthe beginning kind of tell us a
little bit about where the,because I have a 13 year old and
(04:20):
heaven knows I was 13 at onetime and it can be a very
disastrous and like verygrueling place to be in your
life and tell us a little bitabout kind of that onset and
what started happening, andwe'll go from there, there, sure
(04:48):
, yeah, 13 is a tough age foreverybody, right?
Speaker 3 (04:50):
We're becoming an adult in many senses, we're
trying to figure out who we areand form our own path in life.
And to be hit with a chronicdisease like that in the midst
of everything else that's goingon in life, it was traumatic, it
was a lot to deal with, andthen, on top of that, add the
fact that we had no idea whatwas happening or what was
causing this for almost 10 years.
It's an acronym, for it's notthe cute cuddly bamboo-munching
(05:27):
bear that we all are familiarwith.
It actually is a disease calledPediatric Autoimmune
Neurological DisordersAssociated with Strep, and
basically what that means is astrep.
Throat infection, or sometimesother infection causes an
unusual autoimmune response inthe body, namely excess
production of strep antibodies.
(05:48):
Now, antibodies are ourfrontline defense mechanism
against foreign pathogens andinvaders.
Ideally, they're good, right,but when your body produces them
in excess in response to thischronic, recurring infection,
you can start to get problems.
And my problems occurred whenthose antibodies crossed the
(06:09):
blood-brain barrier and enteredmy basal ganglia, which is the
motor cortex of the body, and soI was, in essence, overnight, I
went from being a healthy,otherwise normal teen to being
plagued with these autoimmuneand neurological symptoms like
the motor tics and loss of motorfunction, chronic anxiety, all
(06:34):
these other symptoms that werenot normal, and it was a hard
pill for me to swallow torealize, hey, something is not
right, something is wrong here,my body's not acting the way it
should be, and I dealt withthose symptoms in numerous
respects.
First of all, the physicalmanifestation of the tics was
(06:56):
incredibly frustrating.
I'd have to pick up my phone ormy pencil, then put it down and
pick it up and put it down overand over again until it felt
just right, and sometimes thiswould go on for hours until I
was so frustrated that thedevice would end up sailing
across the room into the wall ofmy bedroom.
And let's just say I got verygood at repairing drywall from
(07:20):
all the damage that I caused.
So, emotionally, I had thisanger and this intense anxiety
and rage and frustration basedaround the symptoms I was
dealing with, and it impactedevery aspect of my life.
The immediate onset of PANDASis very difficult too, because,
quite literally, you wake up onemorning and you have these
(07:42):
symptoms and these ticks andthey only worsened over time as
we struggled to find answers andthe infection and the
inflammation in my braincontinued to fester and get
worse as a result of not findingthe correct treatment.
Speaker 1 (08:01):
It's just an incredible story and I'm so
sorry you had to go through thatand I'm so grateful that you're
sharing this story because foreveryone out there and anyone
that needs you know thisinformation or might have
already experienced this, may gothrough this in the future.
(08:22):
And now you'll know, you knowwhat to maybe look for and we'll
get more into that but what ascary situation to have to go
through, especially, like weboth had said, just going
through teenageism, you know, asa typical and neurotypical
(08:42):
teenager without some type of,you know, immune attack.
Then you know that's it's hardenough, but I can't imagine like
how frustrating that might'vebeen and how confusing and um,
yeah, and, and how hard itmust've been on your family for
(09:02):
I mean your parents to not havethe answers or know where to
find them.
So hard.
What do you?
Where did they start Like?
What kind of misdiagnosis is,if any, did you get, and what?
How did that look?
Cause I think that's reallyimportant to shine a light on.
Speaker 3 (09:24):
Absolutely yeah.
So this was just about 20 yearsago.
This year will be the 20thanniversary of the onset of my
symptoms and I've come a longway.
Clearly, I'm sitting here now.
You wouldn't know that I hadthese issues.
They still impact my life, butin a very minute sense compared
(09:44):
to the way they used to plaguemy life.
I've learned many ways to copeand overcome with this, and
we'll talk about that as well,but in the early days we didn't
know what was going on.
I remember I started havingthis fit of ticks in the
bathroom as I prepared forbedtime.
(10:04):
I started having this fit ofticks in the bathroom as I
prepared for bedtime.
I was brushing my teeth andsomething was wrong and I kept
just banging the toothbrush onthe countertop over and over
again and I couldn't get myselfto stop.
There was toothpaste sprayingon the mirror and I started to
exhibit like the classicTourette's syndrome response of
cursing and swearing and ragingaround.
And my dad came in the bathroomand said Ethan, like dude,
(10:26):
what's going on?
This is not like you like.
Something is clearly wrong.
We need to address this.
And so we scheduled anappointment with with my
pediatrician and he referred usto a neurologist, because this
was outside of his area ofexpertise, and and so we
actually traveled out of stateto visit this neurologist, and I
remember in the car thinking,oh you know, this neurology guy
(10:47):
is going to tell me what's wrong, he'll get me on the right path
and everything will be good.
That is not what happened.
I was told I had Tourettesyndrome, which really didn't
give us any answers.
We didn't know what caused it,we didn't know how to treat it,
we didn't know the cure oranything.
So, in effect, the diagnosis ofTourette's syndrome was more or
(11:09):
less a label that I was givento prescribe me drugs, and so
that's exactly what happened.
Within 10 minutes or less, wewere in and out of his office
and I walked away with aprescription for this blood
pressure medication that hadbeen shown to sometimes reduce
tremors and ticks, and so beganmy journey as I refer to.
(11:29):
I was like a lab rat.
Speaker 1 (11:31):
A guinea pig.
Yeah right, exactly the pill,guinea pig.
Exactly, I went through that.
Speaker 3 (11:37):
Oh, it's not fun.
I mean, by the time I was 17, Iwas on and off more than 40
different prescription meds.
None of them helped Like theside effects outweighed the
benefits of all these meds.
And I ended up feeling worse bytaking many of them Absolutely.
Speaker 1 (11:58):
I can't imagine.
Well, I mean, I kind of didn'thave that experience but had a
lot of like misdiagnosed or for,probably, female autism, now I
know.
But back then, you know, it waslike, oh, you're bipolar here,
let's put you on this.
(12:19):
Let's let's put you on thisbirth control's, put you on this
birth control, this birthcontrol, this birth control,
this birth control.
And I wasn't doing anythingthat I needed that for.
Uh, they were just trying tocontrol moods and other things
like that, and it was just likethis massive overload of nasty
medicines and it's just crazy Ican't imagine the hormone
(12:42):
imbalance that that treatmentwould cause it.
Speaker 3 (12:44):
Right, I mean the side effects of these things
that I feel like the physiciansoften don't even consider the
the adverse effects that couldcome with trying these
medications.
Speaker 1 (12:54):
You know, it's crazy oh, man, let's talk about the um
, the over, kind of how you didovercome some of these
challenges while you were goingthrough it, kind of how you
managed them, things like that,and then we'll talk about how we
finally got to the end of thatin a little bit.
Speaker 3 (13:19):
Yeah.
So I've always been a go getterno-transcript and I told my
(13:53):
parents like look, I am on drugs.
These medications are terrible,and I think it was that use
model of substance reliance andsubstance use that led me into
an ideology that this was theway to treat things.
And honestly, in my opinion,the pharmaceutical experience
(14:17):
that I had was the gateway drugto moving into illicit
substances.
And so, being a young teenager,I was seeking out anything that
could give me relief, andduring high school I tried
cannabis and I remember thefirst time I smoked I
immediately felt like this senseof relief and calmness and you
(14:39):
know I never go on anybody'sshow to condone cannabis use
because I don't think that is agood solution for for most
people, uh, especially kids andteenagers, um, but nevertheless,
that was the only thing I found.
That was like my only tool thatI had at the time to help me
feel better and give me somerelief.
So I relied on that for manyyears and, like I come from a
(15:00):
conservative family, like myparents busted me I don't know
how many times for smoking andit was.
It was not a fun place to be.
I remember one time I came homefrom cross country practice and
my dad.
He probably smelled it on meand said you know, ethan, have
you been smoking?
And I said why are you askingme this, dad?
(15:20):
And he said, well, you're justso calm, you're like relaxed,
you don't?
You're not having any tips.
And I'm like dad, like yeah,you just answered your own
question, like do you see whyI'm doing this?
And so the light bulb kind ofwent off in his mind like oh man
, he's not just trying to party,like this is actually something
he's using, um trying to usemedicinally.
(15:42):
Like this is actually somethinghe's using, um trying to use
medicinally.
The problem is I didn't knowwhy it was helping me, and this
was before we got the PANDASdiagnosis right.
I still really didn't even knowwhat was wrong with me.
I just knew that when I usedthis substance it helped me and
after going on and off all thesemeds, it was like this is the
answer.
Yeah, so I went through that,uh, that lifestyle for many, for
many years, experienced all thenegative consequences of that,
(16:05):
including trouble with the law.
I had paranoia and anxietyassociated with my use to the
consistency of the material, andthe medicine that I was getting
was lackluster.
You know, sometimes it wouldhelp me and other times it would
make me feel more anxious.
Other times it would put me tosleep, and then the people I was
(16:26):
hanging out with as a result ofthat lifestyle was not great
either.
So I really needed a reset, andit was actually after college.
I went through a five-yearundergraduate program and
actually got my degreeCongratulations, thank you.
Yeah, it was still to.
This day is probably thehardest thing I've ever done,
(16:46):
but I did do it.
The day after college, I movedto Colorado.
I got a job on the oldestorganic farm in the state and I
just started growing watermelonsand carrots and everything
except cannabis.
Basically we grew, but I Imoved out there really
(17:07):
pragmatically because I didn'twant to get in trouble anymore.
I just wanted to do what I knewwould help me and live a
carefree lifestyle.
You know, I still hadresponsibilities on the farm,
but it was nothing like what Iwas used to, with assignments
being due and everything likethat.
I was was working outside.
I was breathing fresh air,drinking clean water, eating
fresh farm produce.
I was doing physical laborevery day.
(17:30):
There was very little stress oranxiety or pressure on me and I
just fell in love with thatlifestyle.
And it was actually there inColorado that I was introduced
to CBD, which is one of manyactive components of cannabis
that I call nature's mostpowerful anti-inflammatory.
And knowing what I know nowabout pandas and how the strep
(17:51):
infection causes this braininflammation, the pieces of the
puzzle started to come togetherin my mind and I realized what
was actually helping me was notbeing high, it was not getting
the THC, the psychoactivecompound in cannabis.
It was actually the CBD in thisplant that was relieving the
inflammation in my basal ganglia, relieving my symptoms and
(18:14):
helping me to feel better.
It was actually addressing theroot of the cause instead of
just masking my symptoms pause,instead of just masking my
symptoms.
So in addition to that, Irealized that CBD could be taken
orally or applied topically.
So I didn't have to smoke,right, I didn't have to deal
with the psychoactive, I didn'thave to be intoxicated any
(18:35):
longer, I didn't have to carryaround an illegal substance.
So it was like an answeredprayer for me because I got that
relief I needed without any ofthe negatives, and so that was
kind of like the catalyst to mylifestyle change.
You know, I'm sure when youdeal with any kind of chronic
illness, neurological illness.
(18:55):
It's very difficult to makechanges when you're stuck in
those symptoms.
And dealing with motor tics.
I'm physically stuck in thesesymptoms.
You know, I'd come home fromschool just trying to like push
everything to the side andignore my symptoms, and the last
thing I wanted to do is liketalk about this with my family
or go see a doctor.
(19:16):
I had physician fatigue, I wassick of doctors and pills and
pharmacies and all this stuff.
I just wanted to ignore it, andso I really didn't make any
progress from that whole timefrom high school to college, and
so it wasn't until I foundsomething that helped me,
without the side effects,without the health risks, that I
(19:36):
was able to take a step backand take a deep breath and
refocus and think, okay, likewhat are areas of my life that
need to change?
And after working on the farmand experiencing that lifestyle,
I learned a lot about myselfand the things that that helped
me.
Speaker 1 (19:52):
I love that and I do appreciate what you said about,
um, you know, not condoningsmoking, but it is.
This is your story and yourexperience, and so I really
appreciate you sharing it withus, and I think it those that
are interested in are curious,which you all should be.
This is the type of informationthat you can look into to see
(20:17):
if it will work for you and ifit's good for for the you know
things you might be goingthrough.
I think that it's wonderful tohave more resources than less
resources available to you.
Let's talk about what thepandas diagnosis looks like and
a little bit more kind ofinformation about that for our
(20:42):
listeners so that they can kindof grasp their mind around that.
Speaker 3 (20:47):
Yeah, so PANDAS diagnosis is a clinical
diagnosis.
There's no quantitative bloodtest or anything you can take
that says you have this right.
It kind of like manyneurological disorders.
It involves putting togetherthe pieces looking at your
medical history.
It involves putting togetherthe pieces looking at your
medical history, your history ofinfection in the past, taking
blood work, looking at yoursymptoms and analyzing all this
(21:12):
and putting the pieces togetherand determining the cause and
effect relationship.
And that's how PANDAS isdiagnosed.
And, like 20 years ago when Ifirst started having my symptoms
, no one had even heard ofPANDAS.
I mean, it was not on thedoctor's radar at all.
So it was very, very difficult.
A lot has changed since thenand I work with several
(21:32):
organizations to promoteawareness and advocate for
PANDAS so that it's easier todiagnose and treat, and I'm very
encouraged by that.
I was just on a call with aPANDAS advocacy group earlier
this week and that's exactlywhat they said.
Like today people don't have togo a decade without knowing
what's going on.
Like oftentimes you can go totwo, one, two, maybe three
(21:54):
doctor's appointments before youfind someone who is experienced
and knowledgeable in thisenough to identify it and get
you on a treatment protocol.
And that is the key to makingprogress in this Because, like I
said, when you're misdiagnosed,you don't even know where to
begin.
You have to know, like, what iscausing these issues in order to
address it.
(22:14):
And so, with PANDAS, thetypical treatment protocol is a
two-pronged approach.
One you have to address thesource of infection.
So in my case it was a strepthroat infection.
So getting rid of that nippingthe strep throat bacteria in the
bud, getting rid of it isparamount because you don't
really have a fighting chance ifyour body is still fighting off
(22:36):
that pathogen that's causingall the problems.
So the first there's many waysto deal with this and physicians
have different opinions on it,but typically long-course
antibiotics is the protocol, youknow 60, 90-day therapy, even
longer, in order to get rid ofevery trace of that bacteria in
your system so that you canstart fresh.
(22:57):
And the second prong to thisapproach is to address the
source of inflammation.
And the second prong to thisapproach is to address the
source of inflammation.
So, now that you've gotten ridof the strep bacteria, you want
to address that inflammation inthe brain that's causing all
these symptoms.
Pandas is also known asautoimmune encephalitis, so
brain inflammation caused by theimmune system.
So again, when you're fightingthat strep bacteria, your body
(23:20):
is continuing to produce theantibodies that are causing the
inflammation.
So, first off, getting rid ofthat infection and then
addressing the inflammation isyour pathway to healing, and
there's lots of different waysto do that.
Speaker 1 (23:33):
Yeah, and I think that finding what solutions work
best if you are in thissituation is best for you.
I mean mean, tell us about someother solutions and I I love
that the, you know the cbd worksbest for you.
What have other support groupsor other advocates that you've
(23:54):
met along the way?
What are some of their uhadvice that they might give?
Speaker 3 (23:59):
or you know what I'm trying to say there's other
treatment options available, butthe jury's still out.
I mean, there just is notenough research on this and
that's why, like uh, actually,in two weeks we have our annual
5k fundraiser with the alexmanful foundation.
Who, uh, susan manful, is likean incredible advocate for
(24:20):
pandas in this community.
Her daughter had pandas as well, and we've just we have this
dinner in Washington DC followedby a 5K fundraiser, and we've
done so much work in advocatingfor this and making progress and
educating physicians, and so,again, we know a lot more about
this now than we did previously.
(24:41):
But there are bloodtransfusions that have worked
really incredibly for somepeople and then not really
worked at all for others.
I never actually went throughthat treatment because at that
point I was just done.
I was done with all theconventional medicine and the
last thing I wanted to do is sitin a hospital bed for three
(25:03):
hours with an invasive procedure.
So that wasn't for me.
But what I have found is justfocusing on an anti-inflammatory
lifestyle, and that's withregards to exercise, diet and
supplementation mainly, and manyof these things are, you know,
we should all be doing themquite honestly Like I was living
(25:25):
a very sedentary lifestyle.
I was eating the food from thedining halls.
I was snacking all the time.
I was probably eating too muchsugar, probably drinking too
much alcohol, all these thingsthat were just making the
problem worse.
And so you know I don'trecommend any specific diet or
anything, because we're alldifferent.
But what I can recommend iseliminating processed foods,
(25:45):
eliminating sugar and alcoholand empty carbs that cause
inflammation, focusing on ananti-inflammatory diet.
I believe the food we eat isour primary medicine, so you
can't just eat junk andinflammatory foods and then wash
it down with a pill and expectyour problems to go away.
Speaker 1 (26:03):
That's just not how it works.
Thank you for saying that.
Thank you, I mean, that is thetruth, you, it's really.
That's really.
That's a hard pill to swallowfor people, but isn't?
That is the dang truth rightthere.
You can't just expect amedicine to change your
(26:23):
lifestyle Like.
You've got to make the steps onyour own, you've got to be
disciplined, you've got to haveenough self love to do it for
you know, do it for yourself.
Number one.
Um, that's it Right.
Speaker 3 (26:36):
So purpose was not great.
But, for example, when you havea strep throat infection,
antibiotics can absolutely help.
So I did rely on certainmedications for my healing, but
today I take zero pills, I don'ttake any medication.
I don't smoke, I'm completelyoff all that stuff because of
(26:59):
the changes I've made in my life.
And so number one is diet.
Just analyzing your diet andwhat you eat throughout the day,
intermittent fasting, can behelpful.
There's lots of tools that youcan use that cost you nothing,
basically, that we should all beutilizing.
Um and kind of a parallel tothat.
Uh, exercise, like getting offthe couch and getting in an
(27:22):
exercise routine, is so critical, and for me in particular,
weightlifting and strengthtraining has been integral to my
healing journey, and not notjust because, like I'm exerting
energy at the gym, I look better, I feel better, right, I'm
stronger.
All those things are more orless side effects of
weightlifting.
But my functional medicinedoctor has actually gone back
(27:44):
and examined my journey and hehas said that muscle mass acts
as a sink for eosinophils, likeinflammatory compounds,
cytokines, antibodies thesecompounds that are causing the
inflammation in my brain.
At the time when I wasstruggling the most, I was very
(28:05):
underweight.
I was like skin and bones.
I was running in high schoolbut not really doing much
exercise in college and theantibodies had nowhere to go, so
that's why they kind of enteredan area where they didn't
belong, which was my brain.
By gaining almost 60 pounds ofmuscle mass over this past few
(28:25):
years from working out andexercising, I have built all
that muscle mass which acts.
It basically gives theantibodies a place to go.
So not only has that musclemass diluted the effects of on
my body, of the antibodies on mybody, because there's more of
me, but it's actually has giventhem a place to go other than
(28:45):
into my brain.
So that's been very helpful, ifthat makes sense.
Speaker 1 (28:49):
Absolutely Now, without sounding uneducated and
which I am about this, so Iguess it's okay Is?
Is it curable?
Is that even like politicallyokay to say?
I didn't want to just be very,you know, respectful and
sensitive, but that is that.
That probably is a questionthat people might be wondering.
(29:11):
And what does that look like?
Speaker 3 (29:13):
Yeah, no, it absolutely is.
And I, I tell people, you know,I still deal with the impact of
pandas on my life.
I still have certain minor tics, I still have some compulsive
thoughts, which we probably alldo to some extent, and so I
still deal with the impact ofthat on my life.
However, it's minute comparedto what it used to be.
Like you know, I don't have therage or the anger anymore at
(29:37):
all.
Everything's very controllable.
And so, while I'm not 100% cured, I like to say I'm 95% cured
and an amazing quality of life.
I've learned to cope and livewith it in a way that doesn't
bother anybody, and wheresitting in church or a lecture
hall previously would have beennearly impossible for me, now I
(30:00):
do it, I have no problem.
Like going to this fancy dinner, uh, in a couple of weeks, I'm
not nervous about that at all.
Like it's going to be a goodtime, I can look forward to it.
Um, you know, I've got a family.
Now I'm, I'm running a business,which is amazing, and so, uh,
there there's ways to manageyour symptoms, even if they're
not completely gone, in a waythat makes your life very
functional and fulfilling, andso there are many people who
(30:24):
have been completely cured aswell as a result of using these
tools we're talking about overtime, and one of them that's
very helpful is CBT cognitivebehavioral therapy.
You can actually retrain yourbrain to respond differently to
these external stimuli, whetherit's like for me, it was
coughing and sniffing and theseaudible noises in the background
(30:46):
of these lecture halls andlarge gatherings that absolutely
drove me crazy.
I don't know what it is, butwhen I hear these noises, my
brain signals my body to startdoing these ticks and it's like
a relief of that anxiety that'screated from the triggers, as we
call them.
So what I've done is I usecognitive behavioral therapy to
retrain my body's response tothese triggers, using deep
(31:09):
breathing exercises and justforcing myself to ignore it and
push it out, and over time, whatseems like it would be
impossible becomes very possible, and so I've actually mitigated
many of these tics andcompulsions and symptoms over
time by using cognitivebehavioral therapy.
(31:30):
And what's really interesting isthat there's actually clinical
data that shows CBD can be usedin conjunction with CBT.
They're symbiotic.
I did immunotherapy in the formof allergy shots as a teenager.
I had bad allergies, probablyas a result of inflammation as
well.
(31:51):
What they tell you when you goin to get your allergy shots is
to take an antihistamine.
They always ask you when you gointo the office have you taken
your antihistamine?
And the reason they ask you todo that antihistamine is an
allergy medication.
The allergy medicine reducesthe risk of major side effects,
(32:13):
anaphylaxis, a negative reactionto the injection.
So in a sense, like you go inthere, the antihistamine doesn't
interfere with the results ofyour immunotherapy.
You're still building toleranceup against those allergens.
You're still improving yoursymptoms and teaching your body
to be more immune to theseallergens.
But the antihistamine makes ita little bit easier so you don't
(32:40):
end up in the hospital or havemajor swelling or any of these
other issues.
And the reason I bring that upis because CBD acts the same way
with cognitive behavioraltherapy and cognitive training.
I take CBD before my CBTsessions and it takes the edge
off.
It helps me feel less anxious.
It makes everything easier andsmoother.
So CBT is very difficult.
You're retraining your brain,you're telling yourself to do
(33:00):
something that's uncomfortable,intentionally, and it's very
difficult.
But taking CBD can actuallymake things a little bit easier
and take the edge off, andthat's been studied in clinical
trials.
But that's something Iexperienced just anecdotally,
just by using it and noticingthe effects.
So it's really cool to havethat validation through clinical
(33:21):
trials.
But CBD is not the onlyanti-inflammatory that I use.
I take quercetin and vitamin D,a powerful flavonoid that has
anti-inflammatory properties.
I take curcumin, like turmeric,as well.
So, and then in combinationwith an anti inflammatory diet,
(33:43):
all of those compounds have donea very fantastic job of
reducing my inflammation andhelping me to feel better.
Speaker 1 (33:50):
I love that and I'm really really glad that we made
this connection and got to havethis conversation, ethan,
because I really once againlearned so much from you.
Thank you so much for forbringing all of this to my
audience and to me, and, um, Ifeel really grateful to be able
to share now this knowledge andand share that with people.
(34:12):
Um, two things before you knowwe leave, I want you to tell
everyone where we can find youto to hook up with you or to
have you on their podcast orjust ask questions if they might
have any.
And then don't let me not getthat information for that dinner
(34:33):
and everything, cause I'd loveto share it with my network and
share it with people that mighthave that same interest.
I know a family that is inMaryland that their daughter I
think she's like 21 is reallyhas just barely had a pandas
diagnosis as well, and I want toshare this information with her
family for sure.
(34:54):
So I'd love to do that.
Speaker 3 (34:57):
Yeah, please do that's.
That's wonderful.
The 5k is such an awesome event.
I mean it's just a wonderfulplace to connect with people who
have walked this journey andare walking this journey.
I mean there's people of allstages of life and of their
healing journey at this eventand just a wealth of knowledge
and experience and people whojust want to connect and reach
(35:18):
out to you and do this walk lifetogether right.
So I think it's great.
I've built an awesome communitythrough this organization and
others, so I'll definitely sendyou that.
You can find my information.
My website isgreenvalleynutritioncom.
My story is on there.
You can learn more about mybusiness and what I do on there.
(35:40):
I also have Instagram.
It's Ethan underscore pandasand I post all kinds of fun
lifestyle content on there Farmlife, motorcycles, kids, all the
stuff that I do.
I will say I used to be veryashamed to talk about this.
I was unwilling to talk aboutthis.
(36:01):
I didn't want people to knowwhat I was doing.
Yeah, perfect.
I would encourage people, justlike you're saying, be open and
honest about what you're dealingwith, regardless of if it's
pandas or autism or anythingthat you're dealing with in life
.
Bottling it up and trying tofight it yourself is a losing
battle.
(36:22):
The day that I decided to beopen about what I'm dealing with
, it's like I felt a weightlifted off my shoulders, Like I
didn't have to bear this alone.
I thought that I was honestlylike a freak, like I thought I
was the only person dealing withthis.
I thought I was all alone andthat people were judging me and
they would ask hey, man, are youokay?
(36:43):
And I, I just got so upset.
Um, learning to just be okaywith that and say, yeah, I'm
okay, I have these tics, yada,yada.
I mean it's like the questionsare qualmed immediately.
Like, instead of worrying if Ihave a seizure or if I'm going
to you know keel over, they'relike oh, he's got these ticks,
all right, whatever.
And for a long time I didn'twant to be the kid who, like,
(37:03):
had ticks or was twitching, butlike it's okay and just
admitting that and accepting itthat's your pathway to healing,
like being okay with yourselfand talking about it.
Now you've given an opportunity.
You've given yourself anopportunity to connect with
(37:27):
others who can relate to you andalso, you know, potentially
help them along their healingjourney too.
So now, if you go to my website, you'll see at the top my logo
is a panda, and so I've justembodied that as who I am.
And it's just been, it's justbeen so nice.
Speaker 1 (37:34):
So that's what I encourage everyone to do.
I love that so much.
Is there like a national orinternational website or a site
that people can go to to getinformation on pandas?
Speaker 3 (37:48):
Yeah, there's a few.
So the Neuroimmune Foundationwebsite is a great resource.
I you know I work with theirorganization as well.
There's also ASPIRE A-S-P-I-R-EAspire Network.
It's run by a woman who's agood friend of mine as well and
she has.
Her website is amazing.
(38:09):
It's got all the informationyou would want to know about
PANDAS and how to get diagnosedand what a treatment protocol
looks like.
And if your doctor isunfamiliar with this, first of
all I would point them to theseresources as well, and then I
would.
Is unfamiliar with this, firstof all I would point them to
these resources as well, andthen I would seek out somebody
who is knowledgeable andexperienced in treating this in
order to get a diagnosis quicklyand get on your path to healing
(38:30):
, because the longer you letthis go unaddressed, the harder
it is to climb out of that hole.
So getting that diagnosis andtreatment protocol soon is very
important.
Speaker 1 (38:43):
Oh, ethan, it has been such a pleasure to talk
with you and I hope that we canfollow each other on socials and
stay in touch in the future.
I'd love to hear more about youknow the events that you're
going to, and I love that you'rebuilding and adding to this
(39:03):
community because, if there'sanything I know, more building
community is so important.
There's no need to feelisolated, there's no need to
feel alone.
There's at least one otherperson in those you know 8
billion people, 9 billion peoplein the world that can relate
and help you not feel likeyou're going through something
(39:27):
by yourself.
So please reach out.
Please reach out to me anytimeif you have any questions or
want to be a guest on thepodcast or want to reach out to
any of my guests, and, as always, it's just such a wonderful
time to get to know you and makethis connection with you and
(39:47):
now just so much to look forwardto in the future.
Speaker 3 (39:51):
Yeah, thank you so much, sarah.
Speaker 1 (39:53):
Yeah, absolutely.
We'll have to have you back onto do a homeschooling episode
and talk about our our funthings that we put together for
our kids.
So thank you so much.
We'll, we'll definitely be intouch.
Speaker 2 (40:25):
In the heart of the city.
She's shining bright.
Oh yeah, stories of love andcourage All throughout the night
, her voice resonating An anthemfor all.
Through trials and trials, sheanswers the call.
Her mother and her fighter,breaking barriers and stride
with love as her guide.
(40:46):
She'll never hide.
She's changing the world foryou with the heart that speaks
in strong Melody In a journey weall belong.
Followers gather Like stars inthe night.
So bright, 44,000 voicesSharing in the light.
(41:10):
She stands for family Advocates.
The more Movement of compassionWays we'll soar.
Podcast together Symphony ofsupport In life Changing report.
(41:35):
Thank you, we all belong to hereyes.
A vision clear.
Together we rise, sheddingfears.
In every heart, she plants theseed of understanding and love
(42:05):
for dearly me.
She's changing the world foryou.
We'll see you next time.
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