- One of the reasons why I reached out and why I wanted to be
interviewed in general was because there really isn't any videos of people just talking about it. You know, I remember being that... At least four years ago, I was like, you know, I wonder if there's anybody else out there that's like talked about
it or experienced it, and I couldn't find anything, really. - [Interviewer] What do
you want people to know about PANS/PANDAS? - That people with my disease, which some people, I mean,
a lot of people that I know get freaked out about, and it's like, we're not
crazy, we're just, we're sick. - [Interviewer] Tell me
about your relationship with your mom. - Pretty much the closest
person that I'm with, honestly. So if you wanna say my best friend, or, yeah, just she's
literally the closest person that I know. - [Interviewer] What is PANS/PANDAS? - It is a immune disorder where it attacks certain
parts of the body, more particular the brain, and which causes inflammation, which causes a lot of mental
disorders/disability, kind of. It varies from what it does to the brain to different people. - [Interviewer] How would
you describe what PANS/PANDAS does to his brain? - It tortures it. Yeah. - People like me are just
sick, and that's all we are. You know, we're not crazy. We're not evil people. - [Interviewer] Tell me about when you first started to see symptoms of PANS/PANDAS in David. - It truly was overnight. One morning he had, we all had the flu for
the first time ever, like right around Christmas time. Everybody got over it. It wasn't, you know,
nothing out of the ordinary. And about two weeks later, David, who had been a normal, healthy, happy- - Never got sick. - Never really got sick. You know, and I'm not
gonna say normal teenager, because I think we didn't have none of, we didn't really have the terrible twos. And I have an, he has an older brother, so we didn't have the bad teenage years or anything like that. And one morning, I remember specifically, because I was in the den,
and our kitchen and den was, it was all open, and he was standing at
the silverware drawer, and he opened it up, and he slammed it. Do you remember that? - No, I don't. - Yeah, he slammed it, and I'm like, what? He goes, "None of the
silverware is clean." And I thought he was joking. I'm like, "Yes, it is." "Well I'm not eating." And he just walked out, and I'm just, wow, that's weird. And I thought he was joking. I mean, I really thought he's
just being funny or silly. But it was very clear when he
stormed out he was serious. - And ever since then, it feels like my brain
just hasn't been right. - [Interviewer] Tell me about your relationship with your dad. - It's a unique one, that's for sure. How do we even know how to describe it? - It's so funny, because growing up, he was so shy, or he just wasn't outgoing, and for me to be more outgoing, you would never have thought
that we were so similar. But in actuality, there's
a lot of similar wiring. - And then there was this progression. He would refuse to eat. And over the next, I'm
just gonna take a guess, 'cause it's been so
long, two to three weeks, we went from healthy, happy, outside, fun, eating normal, picky, but normal, to- - I just didn't like vegetables- - You didn't like vegetables. To not eating, could not sleep, rage, couldn't have certain clothes, and it just progressed very quickly. - A lot of my OCD actually comes from like the intrusive thoughts that I get, and the distorting of reality. So what's a good example, or at least an example that
I had when I was little was if I ate with a fork, like my family was gonna die the next day. - We'd have to go through
every fork to find a fork, and then often, still weren't
really successful, so- - [Interviewer] Did he ever have any behavior like that prior? - No. Not at all. - Could care less, actually. - Yeah. I mean, no, not at all. That's why it was so... That's why when when you
talk about these things, people sometimes act like, okay, what's the big deal, you know? And it's kind of like,
okay, you don't understand. This is not the same person a
week ago, wasn't doing this. And the thing was is, you know, the first day or two you kind
of think, okay, interesting. Day three, four, five, you see a progression, and you might see more
things added to the list, or more things... Or the problem is getting worse, you know, like it's now it's all the silverware. It's not just a fork, you know? If that makes sense. - I didn't wanna tell my
parents what was in my head. I didn't want to, you know,
'cause you know you're a child, and you're like... Kids are scared to tell them that they broke something or whatever, let alone the things that were in my head. - [Interviewer] What was
in your head at that point, and how old were you? - I was 13/14. Gosh, I don't know. A lot of the things have germs on 'em, and if I do a certain act, somebody might die, or I might die. Somebody might get sick. - Yeah, that was the first
indication something's wrong. - [Interviewer] What was the second? - When it progressed into more things. Sounds personal, wetting the bed. Could not be alone, could not bathe, had to be fed, dressed. We homeschooled. Could not... You could put a piece of
paper in front of him, and he would look at you
like, what do I do with this? Couldn't read, couldn't write. Could not sleep on anything
unless it was white. Like there had to be white sheets, or we couldn't touch something. He would wash his hands until they literally were red, chapped. Or we would, it's like we're
just gonna wash them for you, because it's, you know,
you're hurting yourself because they're so bad off. - [Interviewer] Do you remember that? - I remember times of that. Yeah. - [Interviewer] What would you be thinking as you washed your hands? - Kinda the examples I gave earlier, where it's either I feel
like someone was gonna die, I was gonna get someone
sick and they would die, a lot of death. - But he was not
communicating that with us. I mean, but there, but
there was a period of time where he could not communicate. - [Interviewer] How much time would those thoughts consume you? - 24/7. Constantly. I had to stop school. - [Interviewer] You couldn't go to school? - Well, we were homeschooled, but even then it was
like, there was no way, 'cause I was in a ball, bundled up, either rocking back and forth, or just crying, pleading
for mercy, basically. - I don't like to use the word violent, but it would be aggressive,
you know, on himself, like hitting himself in the head, because obviously his mind,
his brain, it's hurting, it's on fire. It's, you know, all these things. - [Interviewer] The following
ten second clip is of David during his initial flareups. It is shared with his permission
to show their severity. In the last few seconds of this clip, he punches himself in the head. If you find that type
of image distressing, feel free to skip 10 seconds forward. (David moaning) - I still remember being a kid, and... You know, back then I kind
of had more of the mentality like, you know, I did wanna die just because you felt
like you were going crazy, and you just felt like
you were being corrupted, or like this possessed kind of feeling. But, you know, I think it's really hard. - He would go 24 hours without eating, without drinking anything, without using the restroom, you know? And so you were just on this brink of, okay, we really wanna take
him to the emergency room because what are we gonna say? And then as time progresses, and you think maybe
this is a mental thing. And when we, it's almost like
we would interview doctors. because we were frightened. We were scared, because we didn't want
someone to take our son away. - My brain is like, I would say 90% of the time in that constant intrusive thought, OCD, or minimal to major flare state. - Yeah, 'cause I mean, when your child doesn't go to the restroom for 24 hours or 23 hours. - Or, you know, sitting on a toilet and wiping your rear end is a bad thing. Your mom has to do it at the age of 15. And it's, yeah. - Yeah, I mean, that's- - It's humbling/humiliating
at the same time. - I mean it is, but I mean
that's how desperate you are. I mean, that's pretty extreme. You know, you think about a teenager, his body's changing,
everything else is going on, and that's where you're at. You know, not being able, I mean, I remember times when
he's sitting on the sofa and can't touch the floor, you know. And he literally is like in
a fetal position, crying, or making noises that you
don't really understand what they are. And that goes on for hours. (David crying) - Something is going on with our child. This is not normal. He's not eating, he's not sleeping. He's, I mean, everything. And I literally sat down
at the computer one night and typed in those words,
my child has OCD overnight, because that was like, it was, he was obsessed with everything. And a world opened up to us, and the first thing that came up was PANS. Like, this is the symptom of PANS. And I just, I'm a reader,
and I sat there for hours, just one story after another of parents. "My kid was fine when they went to bed, and they woke up demon-possessed, almost," because it is so just bizarre. And it is so far from a
spectrum of what is normal, having a normal person in the house, to having what has happened? And so that led us into, okay,
so what do we do for this? And who do we find, and what
doctor knows about this? Again, go to the family physician. "Never heard of it." - In your gut as a parent, we knew this had to be it. And maybe that's really
what put us on the road, the way, the path that we were on, is because we had to
fight for him all alone. I think the thing that has frustrated me that I really want people to
know is it's a real thing. - It's heart wrenching,
it's gut wrenching. It makes you sick to your stomach that we have medical professionals that won't even look into it, that will just say he's depressed. He's a normal teenager. - You know, you hear
conversations through the walls, and it's like, are we doing this right? What's wrong with our child? And it's... I can't imagine being a parent. - He developed these
symptoms at an unusual age. Most of the time, when
these PANS and PANDAS kids start demonstrating symptoms, it's early. It's early. And when he was at the age he started, there wasn't a lot of that. That was a new phenomenon that happened with these teenagers, these pre-adolescent
kids developing symptoms, which even made it more bizarre, which made it more, not,
I hate to say suspicious, but made it more, people didn't take it
as seriously, I guess. - [Interviewer] Are all of
your symptoms mental symptoms, or can you physically feel something, maybe even pressure in
the brain because of the- - Yeah, I've kind of said, up here just doesn't feel like it works. Like everywhere else you kind
of have like this feeling, and you feel like, at least to me, normal, I guess, like you
wouldn't think about it, but like over here in
this part of the brain, it kind of feels like you don't, like you kind of have like a leg that can't really bend
much, if that makes sense. Like when you have a stiff arm, that's kinda how it feels. - From what I understand, it
attacks the basal ganglia, which is, if we wanna say it's the decision making part of the brain - [Interviewer] How would
you define PANS/PANDAS to somebody who's never heard of it? - The easiest way I described it is it's an infection in your brain. Something has crossed
the blood-brain barrier, and actually, just like any
other part of your body has, it can get infected. There's a long, you know, when you read and research, you know, there's a long period of time where people didn't think
that was even possible, which is crazy. But yet it is. It is possible. So that's the quick and easy way that I try to oversimplify it, because that's a gigantic
oversimplification. - At the time, PANDAS was more well known, and I think that stood for pediatric acute neuropsychiatric disorder associated with strep. Is that PANDAS? PANS has become, you know,
that as we talked about, it's like it was a subset of PANDAS, but now it's the main one, and I think it's pediatric acute-onset
neuropsychiatric syndrome. And it is when there has
been usually an infection, like flu, pneumonia, strep,
something along those lines. There's been an infection in the body, where the body makes
antibodies to, you know, combat whatever the illness is. And when the illness is done, this is my own way of saying it, the immune system kicks
in, and it doesn't stop, and then it starts attacking. And in this situation,
it attacks the brain. So whether it was from a
strep bacteria infection, or the flu, or what we
eventually learned was lyme. - Years into it, four
or five years into it, we still real... We knew what was, we knew
what the problem was, but no one had a solution. And so when you have a doctor that has a piece of that puzzle, and then you see some
improvement, but then it plateaus. It's like, okay, we're getting better, but we're not there yet. And then the next doctor
like added more to that, and then that was like,
we saw more improvement, but again, we knew we weren't there. And then that's when he
was on a high regimen of antibiotics, and once he
came off those antibiotics, all of a sudden we noticed
all the symptoms came back. Well, okay, so obviously
we're not fixing the problem. We're treating a symptom. And so then the third
doctor that we ended up with actually kinda helped put
the last piece together, and that was the biggest
piece that we didn't know. Lyme is really good at hiding, you know, like you can treat it with antibiotics, and you can clear it up, but it hides. It hides in your body. So as soon as you stop
taking the antibiotic, it can come back. It might take a day, a
week, a month, a year, but it will come back. And so then we realized, okay, we need to find a doctor who
knows something about lyme. That was the third doctor
with the biggest piece. And once he started
showing the presence of... And I always forget the two
things, but spirochetes, and the one that begins with B. I can never remember. But the presence, which is
very indicative of lyme, and we started treating it as lyme, then all of a sudden we started
seeing lasting improvement. - [Interviewer] Do you expect
to always have PANS/PANDAS? - I've accepted it, yeah. And that's kind of right now in my life, where I'm trying to actually like, you know, I was telling
my mom a week or two ago, where it's like, the sad thing is like when I'm having a flare
up, I know it's a flare up, but like I can't push past it. And I'm like, I know I'm better than that. Like I'm stronger than that. Especially over things that, you know, I've been doing this for 10 years. - We were told early on that these kids would grow out of it. And I will say that maybe it's
their ability to adapt to it. Maybe it's their ability... We were fortunate to find
a treatment that worked. Does it undo the damage that was done? No. And that's one thing I do wanna say that I feel like is so
important for these parents. The clock is ticking on this. The longer the incorrect diagnosis, the longer the not getting
any progress with this, this is your brain you're
talking about, right? There's damage being done, and you may clear the infection, and you may win that battle, but then how do you repair
the damage that's done? Now, the brain is an amazing
part of our bodies (laughs). I know a joke that one of my sons, my other sons likes to share is the brain is the only
organ that named itself. I always think that's funny. But anyway, I... But yet, just like scar tissue, just like a broken bone may
never be exactly the same, I don't know that the brain is ever 100% where it needs to be. - [Interviewer] When
was your last flare up? - I have one usually, whether it's light or not, one every day. - [Interviewer] Would you say his symptoms have lessened, heightened, stayed the same since 10 years ago? - Oh, wow. Well- - [Interviewer] Or is it a roller coaster? - Well, it's always a roller coaster. I mean, it is, and
that's because every day he may wake up with a new deck
of cards he's got to play, if that makes sense, if
that's a fair analogy. Do you think that's a fair analogy? - Sure.
- Okay. Today he can say his alphabet forward, backward, backward,
forward, no big deal. Tomorrow, it might be gone. - [Interviewer] What has it been like to see him age a decade
since these symptoms began, but still see him struggling with it? - As a parent? It's hurtful, because we know there's so
much potential in there. Because I think as he's aged, I think there's just a lot of
things that are still there that he may not see the way we see. And when you see him
struggling or hurting, or he's not confident about something, you just wanna make it better. - [Interviewer] Has it
gotten easier or harder to deal with PANS/PANDAS
as you've gotten older? - In certain ways, yes, and in certain ways, no, 'cause as I get older, it's, with my brain at least, it always tries to, at least
the intrusive thoughts, they always try to get darker. You know, it's like this what can we do to make you
feel like more of a bad person? So compared to the reality
of if I eat with a fork, and my parents are gonna die, well that's just absurd, to more this like, you just
feel like you're this evil, you're this demonic person. - [Interviewer] What is
the most important thing for the world to understand
about PANS/PANDAS? - They're not crazy, and they need help. You've got to get to that root cause, because these young kids
are taking their life because they think they're crazy, or because the intrusive
thought is in there, and just not to dismiss them. - [Interviewer] What's
the most important thing for other people to
know about PANS/PANDAS? - That it's definitely not
an overnight treatment. And you know, we're
kind of in a generation, or because it's very new, we don't know how it affects people, you know, later down in life. - [Interviewer] Why do
you want people to know that it's not something
that has an overnight cure? - Because I think that could
take off a lot of the pressure.
