Episode Transcript
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Speaker 1 (00:07):
Welcome to Psychobabble dash Me. I'm your host, Daniel Bartley
along with Marra mar Weeks.
Speaker 2 (00:12):
Hi everybody.
Speaker 3 (00:13):
Before we start, I'd like to put out a disclaimer
where we would that this episode may be triggering for
some people and is in no way meant to replace
mental health treatments.
Speaker 1 (00:23):
So today is our which episode sixt episode of season
two And I was approached by a friend of mine
that he asked us to do an episode on PANDIF,
which is pediatric autoimmune neuropsychiatric disorder. So I like, I
(00:43):
was talking to Merhramar before the podcast, and I said
that I hadn't really taken care of anybody with this,
so I had to do a lot of research on it.
But she has so or you know, she's seen a patient.
Speaker 3 (00:57):
One when I was training as a psychond and I
was doing child psychiatry and a child came in with
all these symptoms that we're going to discuss, and the
psychiatrists asked me if I'd ever heard of PANDAS and
I said no, and then that's when I first learned
about it.
Speaker 1 (01:13):
Yeah, So the main thing is definitely to get some
awareness out there for parents, for patients, for anybody that
has younger kids.
Speaker 4 (01:25):
Because it's it's generally ages three to twelve.
Speaker 1 (01:30):
And they say that boys are more likely common to
have it than girls. It did say in the research
that teenagers and adults don't generally have this, that's what
I but what I but they did say.
Speaker 2 (01:43):
That there can be like a recurrence of the symptoms. Yeah.
Speaker 4 (01:48):
I did read that too, and it's very rare.
Speaker 2 (01:50):
Yeah. Well actually it.
Speaker 3 (01:52):
Said accorded to a National Institute of Health, it said
one in two hundred children, which I think that's a lot.
Speaker 1 (01:58):
Yeah, I've read that, the one in two hundred, and
then I've read another one that it was a study
in two thousand and twenty three it said one in
twelve thousand.
Speaker 3 (02:10):
So well, the thing is Daniel and I were talking
about also that it's even though we've both I mean
we've read about it, I've seen it. It is a
controversial diagnosis, yes it is. So it's not listed in
the diet, the diagnostics, the statistical manual that we use
diagnose people. But I mean, in my opinion, my humble opinion,
(02:31):
it's a rule.
Speaker 4 (02:32):
Yes, I agree too.
Speaker 1 (02:34):
So this disorder is associated with straps.
Speaker 3 (02:39):
Right, cheptocopper infection. So what they say is how it
works basically, and then we can get into the symptoms
and stuff. Is so the scheptococcal bacteria survived in the
human body by putting molecules on their cell walls that
look almost exactly like the molecules found on the chain
on the child's heart, joint, skin, and brain tissue. And
(02:59):
they call this molecular mimicry. So it kind of hides
that way and your immune system can't recognize it. But
then when the bacteria is finally recognized by the immune system,
it starts to attack all the cells, including the child's
healthy cells.
Speaker 2 (03:16):
And so then when it.
Speaker 3 (03:19):
Starts attacking these foreign invaders, as they say, and these
mimic cells, they start to not be able to differentiate.
Speaker 2 (03:26):
So it becomes almost like an autoimmune disease.
Speaker 3 (03:30):
And some of these cross reactive antibodies that are targeting
not only the strep bacteria, they're also targeting the healthy cells.
Speaker 2 (03:42):
And that's what causes the symptoms of PANDACE.
Speaker 1 (03:45):
Yeah, and the symptoms are usually sudden and overnight, and said,
so it's gonna rapidly happen, and generally.
Speaker 3 (03:52):
After a strep infection section usually like the struck throat.
It says there's three stages mild, moderate, and severe, and
that's just basically when it starts, the symptoms start to
disrupt home life, in school life, and the symptoms are
only present for a few hours a day, and then
with the moderate symptoms, it becomes more distressing, starts expecting
(04:15):
their daily life. And they say the symptoms are present
fifty to seventy percent of the day, and then it's severe.
Speaker 2 (04:22):
They're having this.
Speaker 3 (04:23):
Symptoms seventy to one hundred percent of all waking hours.
Speaker 1 (04:26):
Yeah, so the symptoms of it are OCD.
Speaker 4 (04:31):
Ob sets up compulsive.
Speaker 1 (04:34):
The child may become moody, irritable, anxiety, have a lot
of separation issues, you know, once they're parent leaves, they
have all these fears, you know, things that they didn't have,
you know.
Speaker 2 (04:47):
Yeah, RCD sis.
Speaker 3 (04:48):
It's gonna be anything from you know, regular well, I
don't want to say regular OCD.
Speaker 2 (04:54):
Symptoms of like they have to do things in a
certain order too. They can also.
Speaker 3 (04:57):
Start to pick at their hair or pick at their skin.
They can become restrictive in their eating. Yeah, a lot
of motor and vodal vocal tics, so you know, twitching,
or saying things out of out of place where you
wouldn't normally, almost like a tourette.
Speaker 4 (05:17):
Yeah, exactly, increase risk.
Speaker 1 (05:21):
It said if someone has the family history of autumn
immune or rheumatic fever.
Speaker 2 (05:26):
It did say.
Speaker 1 (05:27):
Now, whenever I was reading the pandace, there's pandas and pans.
Did you read that the pants is more with lyme
disease and that so some.
Speaker 2 (05:39):
Other symptoms they could have.
Speaker 3 (05:40):
They could have going into having visual and auditory hallucinations.
Speaker 2 (05:44):
Since it can affect.
Speaker 3 (05:46):
The joint cells, they can have a deterioration of their
motor skills, sensitivity to light and sound, and they can
develop that they can regress developmentally, so they can start
bedway again. Yeah, baby talk, increased anxiety just I mean
(06:06):
everything you would. It basically covers a whole spectrum of
behavioral symptoms the kids. The child may complain of joint pain, fatigue,
head fatigue, headache, abdominal pain, throat pain.
Speaker 2 (06:20):
And they said, alright, some they develop a skin rash.
Speaker 3 (06:22):
Yeah, and then like you said, or maybe said that
to me privately before we start taking that, the symptoms
may come and go, so they might be okay for
long and they reappear.
Speaker 4 (06:33):
Yeah, even with treatment. It says that.
Speaker 1 (06:36):
So there's really no no tests, right, I mean tests
they do are.
Speaker 3 (06:43):
Basically just to cover all their basis. Obviously, they're gonna
do a STREP test because as we said, this often
happened after a strepping section. They can do it's called
an anti streptolycine. Oh tests, they can test for lime
disease because like you take the hands and then they
can do it cutting hand panel which tests for different
autoimmune disease.
Speaker 2 (07:03):
And then they do all those allergy.
Speaker 3 (07:05):
Tests these G eighty I, GM I G G B
twelve and vitamin D which is also part of the
treatment is targeting needs.
Speaker 4 (07:14):
In two of a good health history and physical and
all of that for sure.
Speaker 1 (07:22):
So now we'll get into some treatment with the panda.
So CBT so like tox therapy is a big one.
First you're gonna have to treat the strap with the antibiotics.
Speaker 4 (07:36):
I mean that's right.
Speaker 3 (07:37):
Actually the scyllins like the ylincillin, and if they're allergic
to the cephalos.
Speaker 1 (07:42):
For steroids, msades and said.
Speaker 5 (07:45):
They're not steroids a time planatories and then they do
say the s sris but they do say that the
kids are very sensitive and they have you have to
go you know, low and slow.
Speaker 4 (07:57):
Because they'll have severe side effects.
Speaker 3 (07:59):
Of the US treat the ticks and stuff like that. Yeah,
and then the the what they found now is the
IVY and you know glossins. Yeah, so they treat that
the infections and the immune autoimmune reaction. So you go
in and they give you your body zone basically.
Speaker 2 (08:21):
Yeah, which is very costly.
Speaker 4 (08:23):
I was reading that. It says no, but I guess it.
Speaker 1 (08:27):
Would probably depend on the plan, you know what I mean.
But when the research that I was reading was that
and it can cost up to twenty five thousand dollars,
it said, I'm confusion. I think so, yeah, that's what
it said. Yeah.
Speaker 3 (08:45):
They also said that you can use long term prophylactic
antibiotics because it can be successfully treated, but the child
may relapse, especially if they.
Speaker 2 (08:55):
Have another stop infection. It can make the symptoms more.
Speaker 1 (08:58):
Yeah, the second time around, the IG is usually more
severe cases. They do say ten to fifteen percent of
children require IV because whenever we talk about how many
children can get it, and with one dose it can
reduce the symptoms, it says.
Speaker 4 (09:18):
Within hours to day.
Speaker 1 (09:20):
But then sometimes people have to be on long term
maintenance things. So and then yeah, and I mean we
don't want to scare people.
Speaker 2 (09:29):
Most kids with strepped don't get panda.
Speaker 4 (09:32):
No, but it's very rare.
Speaker 2 (09:33):
Yeah.
Speaker 3 (09:33):
But if your kid had a strep infection and then
you know, a week later or two days later, they
start acting unusual.
Speaker 4 (09:41):
Yeah, moody, irritable.
Speaker 3 (09:43):
And I think part of the place where we live
is getting would be getting the right diagnosis. Yes, like
a doctor there would recognize and look for this. So
I think his parents are more informed.
Speaker 1 (09:52):
Yeah, for sure, like, hey, let's look at that. And
if you can't get an answer here, go somewhere else,
Go somewhere else. Because whenever I was doing the research,
even in the studies, it says like what do I
do if my doctor doesn't you know what I mean?
And then you know, some doctors you've got to think
that if they're not even that familiar with it, just
(10:14):
say they're gonna just think they have a psychiatric disorder.
Speaker 2 (10:18):
Well, I mean I never taught this.
Speaker 4 (10:20):
No, I wasn't either, huh huh.
Speaker 2 (10:22):
And the and the scary party is, like Danielle said,
how much it costs.
Speaker 3 (10:26):
So if you have a plan, and you have to
see doctors on that plan, and they're not giving you
the answers.
Speaker 2 (10:31):
I mean it's it's.
Speaker 4 (10:33):
Going to be paying out of pocket.
Speaker 2 (10:34):
Yeah. Who can afford that?
Speaker 1 (10:36):
Yeah, nobody, especially in this now day and age.
Speaker 2 (10:42):
Especially not where we live.
Speaker 4 (10:43):
No.
Speaker 2 (10:44):
So I think we have a guest coming on here. Yeah,
I want to say a little bit about what about that.
Speaker 1 (10:51):
So that's the person that approached me. It's a friend
of mine. His daughter is suffering from pandif we're going
to get more into what her symptoms and stuff are,
So his wife is going to come on because she's
been working with someone up I think that they do
go to up in Chicago working with somebody, a lady
that you know, really is an advocate for it and.
Speaker 2 (11:12):
Stuff like that.
Speaker 1 (11:13):
So we'll see what she has to say and and
maybe get some more information, yeah, resources, and just to
see kind of like what she's gone through.
Speaker 3 (11:32):
So we have our guest, Reagan on, who's going to
tell us about her experience with her child. Hi, Reagan,
thanks for coming on the show for us.
Speaker 6 (11:41):
Hello, thanks for having me.
Speaker 2 (11:43):
So I guess let's just start with it again. How
old is your daughter?
Speaker 7 (11:47):
She is now ten and a couple of weeks, she'll
be eleven. But our panda's journey started when she was nine.
It was a year ago in November.
Speaker 3 (11:56):
Okay, and did she have a strep infection prior to
the simple starting.
Speaker 7 (12:01):
She did, she seemed to me like she was perfectly amazing.
Over the weekend, we had a cheer competition. She had fun,
she was great. And then Monday morning at school, she
was crying in the office.
Speaker 6 (12:15):
Which is very atypical of her.
Speaker 7 (12:18):
She's a tough cookie. I feel like normally she would
have stuck things out through the day and been embarrassed.
Speaker 6 (12:24):
To go to the office.
Speaker 7 (12:26):
But she called and I had to go get her.
She didn't feel well. She kept saying our head hurt.
She didn't feel well, and we had a friend whose
daughter was tested positive or strep that week. I have
to say she didn't have normal strep symptoms. She never
complained of the source throat, she didn't have a fever
at that point.
Speaker 6 (12:47):
We made it to like.
Speaker 7 (12:49):
Friday morning, and she did test positive. But the only
reason I had her tested was because of the friend's
daughter having strepp. They put her on antibiotics and she
actually got worse.
Speaker 6 (13:02):
She did develop a fever.
Speaker 7 (13:04):
They switched her antibiotic, and then she just continued to
decline in the next few weeks.
Speaker 6 (13:11):
Constant, I don't feel good. She looked bad. Bags under
her eyes, had.
Speaker 7 (13:15):
This heavy expression, her face was puffy. The complaint of
the headache was just absolutely NonStop.
Speaker 6 (13:24):
So from there we looked for something to do for
the headache.
Speaker 7 (13:29):
We went back to the doctor. They did an X
ray of her chest in her head and they said
she had sign usitis. Changed antibiotic again, added pregna zone.
We had all kinds of blood work and cultures, mono lime, covid, EBB,
flu thyroid. At this point, she couldn't even tolerate going
(13:50):
to school. Then we ended up in the er and
they gave her migraine cocktails and I was so happy
because she looked peaceful and RESTful.
Speaker 6 (14:00):
She fell asleep and she woke up and.
Speaker 7 (14:02):
She immediately the second shop in her eyes said how
about her head hurt?
Speaker 6 (14:07):
And they did a CT scan there.
Speaker 7 (14:09):
And they did a different antibiotic. So this is like
a whole month long thing we had going on leading
up to her being impatient in the children's hospital. Again,
I'm stressed about this headache because it's her main complaints.
It's you know, she's like, it's over a ten, it's terrible.
So they were thinking migraine, and that's kind of how
(14:31):
they looked into it and treated it. They did, gosh,
what else did we have done? We had MRI MRV,
she saw ophthalmology, They gave her migraine cocktails, seizure medicines,
tripped hands, morphine xanax, like nothing.
Speaker 4 (14:49):
Helped this headache.
Speaker 3 (14:51):
Which does she display any besides the physical was she
had her mood altered it anyway?
Speaker 7 (14:58):
Well not yet, but now this is hindsight. So we're
stressed about this headache because I'm telling you it was
constant all day long my head I heard, but I
don't feel good.
Speaker 6 (15:07):
I had heard.
Speaker 7 (15:09):
And while we were in the hospital, they took her
off of antibiotics. They took her off of ibuprofen because
they were now telling me that it was probably medication
over you headache. And while we were there, then we
started with what if fears and difficulty going to bed,
and she started with some picks and everything got worse.
(15:33):
And at this point, again she was off of antibiotics
and she was off of of anti inflammatory, so her
obsessive compulsive symptoms?
Speaker 2 (15:46):
Were these overworrying about things? Obsessive thoughts about stuff?
Speaker 7 (15:51):
Yes, yes, I feel like something terrible is going to happen.
I don't know, I don't think that it is, but
I just have this overwhelming sphere that's something terrible is
going to happen.
Speaker 2 (16:01):
Right, And as a mother, how do you come for
a small child about that? Right?
Speaker 7 (16:05):
Yes, I mean you can. All you can do is
say that it's not and I'm here for you, And
I mean I'm still dealing with that today.
Speaker 6 (16:11):
What else do you do?
Speaker 7 (16:12):
What else do you say?
Speaker 6 (16:13):
How do you make them feel safe?
Speaker 2 (16:17):
Then?
Speaker 6 (16:18):
Let's see we left there.
Speaker 7 (16:20):
They were like, suck it up, go back to school.
Speaker 6 (16:22):
You just have migraine. And things still weren't good. We
were back in school, but I would have to go
with her.
Speaker 7 (16:29):
My mom would have to go with her. She had
sensitivities to light and sound and didn't want to be
in the lunch room or the art room, or in
gym class or places where she felt overwhelmed.
Speaker 2 (16:42):
And it is a complete opposite of what this.
Speaker 6 (16:45):
Oh my god, she is so outgoing.
Speaker 7 (16:48):
I feel like the way she was acting, she probably
would have made fun of somebody else acting this way,
having me in school.
Speaker 6 (16:54):
I mean she was in the fourth grade, you know,
walking under the classroom. Yeah, a complete one sixty.
Speaker 2 (17:02):
A lot of anxiety and yes, yes.
Speaker 7 (17:05):
Yes, And anxiety is something like you can't even describe.
Speaker 4 (17:11):
I mean, it's worse than a toddler.
Speaker 6 (17:13):
With her parents.
Speaker 2 (17:14):
So she's like she had regressed.
Speaker 7 (17:17):
Oh yeah, And speaking of regression, she had baby talk
or she would talk and I'd call it like an
Elmer flood kind of voice or sort of nasally right. Yeah,
regression for sure.
Speaker 3 (17:32):
And she was still having at this point, was she
still having ticks and such?
Speaker 7 (17:38):
Yeah, So her she would like shake her hand and
she would like punch her arm and crack all of
her knuckles and back and crack things sort of like
a tick. I don't know if that was more of
a stemming or if it was the Chorea, or if
(17:58):
it actually was a tick. It was like she couldn't
stand the pain, Like she was in so much pain
that she would like shake her hands.
Speaker 2 (18:05):
So she d enjoyed pain also, oh yeah, oh yeah, anything?
Speaker 7 (18:11):
Oh no, no, sleeping, would not sleep through the night,
difficult to get to bed, wouldn't stay asleep, ended up
in our bed every night. No longer wanted to go
to dance. She loved dancing, wouldn't go there. Does complete
loss of interest in her friends and things that she
liked doing. I mean, even if she was at home
(18:32):
with us, was like, let's go shopping at Target. You
know that's fun and amazing and we love to shop.
Speaker 6 (18:37):
No way, wouldn't do it.
Speaker 3 (18:39):
And how did this affect because she has a sister. Correct,
she does.
Speaker 7 (18:43):
And that's the hard thing with Pandace is it really
does affect the whole family, the whole family dynamic. You know,
she lost her sister, and the older one feels like
she lost her sister, and she probably feels like she
lost me in the process, because.
Speaker 2 (19:00):
Become your whole life focus. Yeah, yeah, how long until
you got the right diagnosis? All right?
Speaker 4 (19:08):
So that was November.
Speaker 6 (19:11):
In it was like the day after Christmas.
Speaker 7 (19:13):
Actually, we decided to go to Cleveland clinic because we
still were miserable searching for answers. You know, you look
up online if you have a headache for so many
days when you do go to the emergency room, I
mean we've been there, We've been impatient. So we saw
neurology at Cleveland Clinic.
Speaker 6 (19:30):
I really liked the doctor.
Speaker 7 (19:31):
He spent lots of time with us, went over lots
of things, and he said that he thought that her
headaches were anxiety induced from a type A personality. And
some of that sort of was making sense because at
this point I wouldn't have described her as anxious. But
(19:55):
that made me sit back and kind of think like okay,
and he's like, well, look how she's like clinging to you,
but look how she's sitting next to you. And then
I'm like, okay, separation, anxiety, Like more things started clicking
with me. I had looked up pandas previously, just because
I was lucky enough to know that she.
Speaker 6 (20:12):
Just had strip so just more pieces for the puzzle.
Speaker 7 (20:16):
Were falling into the place for us.
Speaker 6 (20:20):
He put her on Zoloft.
Speaker 7 (20:23):
And she was on that for I probably had her
on it for two.
Speaker 6 (20:28):
To three weeks, and she was worse.
Speaker 7 (20:31):
She became agitated and manic on that, and I was like,
there's you know, they got me thinking about the anxiety,
but I'm like, there's more to this.
Speaker 6 (20:43):
So it was January and.
Speaker 7 (20:45):
That's when we got in contact with a pandas doctor out.
Speaker 2 (20:48):
Of Chicago and that's only because you knew to do that.
Speaker 7 (20:53):
Yes, yeah, I mean again, I have two things that
I feel very fortunate about. One, she had a document
a case of stress that I'm very lucky that we
found out she had that. And number two, I have
a medical background, so I feel like I knew enough
to dig more.
Speaker 2 (21:09):
Right.
Speaker 7 (21:10):
And then we have a family friend who knew somebody
whose child had pandas they put me in contact with her.
She's an advocate for families and she has been just
the best resource and support system for me.
Speaker 6 (21:25):
And she's going to put me in touch with her
physician in Chicago.
Speaker 3 (21:28):
Now is she does she do this just because I
was going to ask you to share her her name
for her organization or is it just a private thing?
Speaker 6 (21:40):
I will have to check with her about that.
Speaker 7 (21:43):
She probably not there.
Speaker 2 (21:45):
There's just not a lot of resources out there for people.
Speaker 7 (21:47):
But okay, yes, yes, there are two places that have
been really helpful for me. Two websites, Panda'snetwork dot org.
Speaker 6 (21:58):
Started by Diana Pulman as amazing.
Speaker 7 (22:01):
And Aspire a s p i r e. Dot Care
is also very amazing. All kinds of great resources and
information on there for everybody for teachers, for parents, for caregivers,
for medical professionals.
Speaker 6 (22:22):
Those are really great website.
Speaker 2 (22:24):
So then thank you for that.
Speaker 3 (22:25):
So then Reagan, this you got in contact with this
uh gettian in Chicago.
Speaker 7 (22:33):
Yeah, so this we are seeing doctor Kovosovic, or they
call him doctor K in Chicago. He's one of the
first ones. I mean, he's been doing this for twenty years.
And so what he had us do first was what
they call an antibiotic test. So he put her on
(22:53):
omnosp for two weeks and then we were to report
back to him whether we noticed as there was any improvement,
and there was. I can't tell you like that cured
her or anything, but I feel like her personality was
kind of shining through, peeking through the cracks a lot
(23:14):
more with that. So we talked to him and he
had us continue the antibiotic for a month. He also
had us get her tonsils removed. Her tonsils were not
what she would call extremely large. It wasn't like a
kid who you look at her throat and be like, whoa,
you know, she's obviously hat strup a billion times.
Speaker 6 (23:33):
But when they were removed, the doctor describes them.
Speaker 7 (23:37):
As smushy and diseased and it usually only takes I
think about twenty minutes to do to dig out your
tonsils and adenoids, and it took them an hour because
he was scraping all of that did smushy tissue. That
pythology they did, and you would not believe the stuff that.
Speaker 6 (23:59):
You found in there.
Speaker 3 (24:01):
I mean.
Speaker 7 (24:02):
Strange bacteria that are found in animals.
Speaker 6 (24:06):
Even I mean like really really weird stuff.
Speaker 7 (24:09):
I was like, I can't believe that this was in
your body.
Speaker 6 (24:13):
After that, that was we had really good results after that.
Speaker 7 (24:18):
Honestly, she was back in school.
Speaker 6 (24:20):
I'm not saying she was back to herself, but we were.
Speaker 7 (24:25):
Completely functional at that point, doing pretty well. And then
the next thing that we did was IVIG at the
beginning of May, and as I said, at that point,
she was pretty good.
Speaker 6 (24:40):
She was back in school.
Speaker 7 (24:41):
After we had the IVIG, she had a week of regression.
Speaker 6 (24:46):
And I was like, what the heck did we do?
And then the weeks.
Speaker 7 (24:49):
After that she just got better and better. I would
say a month after she was back, she was back.
I'm not saying one hundred per but she was really back.
And that continue to improve over the next month, month,
five or six. That was taking us to like October
(25:10):
of this past year. I think she was near one
hundred percent herself.
Speaker 3 (25:16):
Amazing And did they only do the the iv id
AID treatment once or yes?
Speaker 7 (25:23):
So and again I'm coming to you as a mother
and not as a professional by any means.
Speaker 6 (25:28):
I'm we're still very new to all of this too.
Doctor K does it one time. He does high dose
over the course of two days with the hopes that
they're going to continue to improve.
Speaker 7 (25:42):
Actually through the year, he marks success at three months four.
I think kids under thirteen and over thirteen at six
months if you have eighty percent improvement in symptoms. So
she was success for sure. But that brings us to
our present. Right before Christmas, she had COVID and she
(26:08):
again called me from school.
Speaker 6 (26:09):
It was like deja voo and.
Speaker 7 (26:11):
Crying and I don't feel good in my head, hurts,
and I thought we have strapped because they warned us,
you know, it's not going to be the sore th road,
It's going to be all of these narro psychiatric symptoms.
Speaker 6 (26:21):
So immediately I went and had her tested.
Speaker 7 (26:24):
And here it was COVID, but she was presenting the
same way. Within the week she resolved was back to normal.
We had a wonderful holiday season.
Speaker 6 (26:36):
She was great.
Speaker 7 (26:38):
Went back to school in January and she called again crying,
I'm not feeling well.
Speaker 2 (26:45):
She ended up with STRAP.
Speaker 7 (26:48):
So we are in hell again currently and trying to
get iv ig again.
Speaker 3 (26:55):
So all the symptoms that she previously had returned with
the Yeah.
Speaker 7 (27:00):
But I have to say that another hard thing with
this disorder is, you know, there's the waxing and waning.
Speaker 6 (27:07):
Things seem to come and go.
Speaker 7 (27:09):
Things seem to morph or change. So a lot of
it is similar, but she's.
Speaker 6 (27:15):
Having a lot of.
Speaker 7 (27:17):
Oh gosh, it's sometimes it's like somebody just walked up
to her and scared her, and she'll like jump and scream,
and then she'll like look around, and I'm like, what
are you doing? Why are you looking around? She said,
I'm making sure it's safe.
Speaker 2 (27:31):
Is she having hermations?
Speaker 6 (27:33):
I think very mild.
Speaker 7 (27:35):
I mean she's not going to say I see this
thing over there.
Speaker 6 (27:38):
But the way that her eyes are a lot of times.
Speaker 7 (27:40):
And the way that they'll move quickly or she can't focus.
She currently can't read. She's lost her ability to write.
We didn't have any difficulties with that previously.
Speaker 6 (27:51):
I'm back sleeping in bed with her every night. It's bad.
Speaker 7 (27:56):
I mean, we were one hundred percent and now we're
I feel like we're back to where one.
Speaker 2 (28:00):
So what is the I mean, this is a very
personal question. So what is the polo to get the
IVY again? Is it insurance or is it just noticing?
Speaker 6 (28:10):
All right?
Speaker 7 (28:11):
Well, he wanted us, the doctor wanted us to be
on the antibiotic for a month. And I'm a pharmacist
and I didn't realize all of this, but antibiotics and these.
Speaker 6 (28:22):
Kids are neuroprotective.
Speaker 7 (28:25):
I don't know if you went into the mechanism of
the whole thing, how your body's creating these tea cells
to fight the strip or whatever, and you know, different
things in pans versus pandas. But these antibodies then start
attacking your body. They attack the brain and cause inflammation.
So he said that the half life of the tea
(28:46):
cells are actually around I believe he said twenty twenty
nine days. So we wanted her on the antibiotic for
a month, and he really thought that she would see improvement.
That this is more of a relapse, This is more
of a flare which you can see or than a relapse,
but she did not improve, so.
Speaker 2 (29:06):
That when we're back on oral antibiotics when she yes, yes, and.
Speaker 7 (29:10):
Actually after the ivig she also was on a daily
antibiotic as kind of a preventative measure to China prevent struck.
Speaker 2 (29:19):
Right.
Speaker 3 (29:20):
Yeah, so now you're just waiting to do so.
Speaker 6 (29:26):
Yeah.
Speaker 7 (29:26):
So now we had blood work done again and then
as soon as that comes back, and we are going
to try to get the letter of medical necessity to
the insurance and then get in as soon as possible.
It's expensive, soel.
Speaker 1 (29:41):
I've read some research where it could be up to
twenty five thousand dollars.
Speaker 2 (29:46):
Yeah, yeah, is that right? Yeah, okay, yeah.
Speaker 7 (29:49):
And part of the reason for being so expensive it's
it's made from human blood products. Yes, and I think
it's thousands of people to create it takes to do it,
so yeah, yeah, so that's what makes it so expensive.
Speaker 3 (30:07):
So this, this whole process has been going on for
over a year, correct.
Speaker 7 (30:13):
Yes, Yeah, ups and downs over the course of just
over a year.
Speaker 3 (30:17):
Oh my heart goes out to you. I can't imagine. Yeah,
and you have to fight, obviously with the insurance to
get it covered because who had dollars sitting in the bank.
Speaker 7 (30:28):
Right, and I don't know how that's going to be.
My fear is that it's been less than a year
since she's had it. I don't know if that will
be an issue with the insurance or not.
Speaker 3 (30:39):
What kind of doctor is this doctor that you're seeing
in Chicago? Is he a neurologist? Is he a PSYCHIATRISTA
is not?
Speaker 7 (30:45):
He actually is pediatrician who had a friend's child who
had this twenty years ago and then just you know,
became his mission.
Speaker 2 (30:57):
God bless him.
Speaker 3 (30:58):
Yes, yeah, Well, is there anything else you'd like to
tell us? We really appreciate you sharing your journey.
Speaker 2 (31:06):
Yeah.
Speaker 7 (31:06):
Sure, I'm glad I didn't get too emotional there at
the end, since I'm like, I'm the thick of it again.
Speaker 4 (31:12):
I wanted to.
Speaker 7 (31:12):
In October, I would have given you such a story
of hope. But now that we're back in then yeah, yeah,
and she did, and I know that.
Speaker 6 (31:21):
This is going to help.
Speaker 7 (31:22):
I'm telling you, she was one hundred percent and we
had her back. It was amazing.
Speaker 6 (31:28):
I wanted to look through.
Speaker 7 (31:29):
I wrote down just a couple of thoughts earlier that
I didn't want to miss.
Speaker 6 (31:35):
Oh one sign.
Speaker 7 (31:37):
Of strip that I think a lot of people don't
know is peeling of fingertips and hands, So just for
people to be aware of that, you know, if these
kids don't always present with a soort throat, sometimes it's
stomach ache instead. Also, when I look back and my
daughter's medical charts, we had some stomach issues going on
(31:58):
in the spring, which I had completely forgotten about, which
I'm sure with all of this.
Speaker 6 (32:03):
We just had no idea.
Speaker 7 (32:07):
Yeah, I wish that there was some kind of a
checklist that practitioners could have, you know, if a child
was presenting something that just seemed odd.
Speaker 2 (32:19):
I think a lot of people aren't aware of that exists.
Speaker 6 (32:23):
Yeah, And I think it's hard.
Speaker 7 (32:24):
I mean, even as a parent, like I was stuck
on this headache, it was hard to put all the
pieces together and all of these symptoms that don't seem
related that you.
Speaker 2 (32:33):
Kind of in the middle of it, you're yeah.
Speaker 7 (32:36):
Yeah, and he looked back on it because you're like, oh, no,
she acted like that because of this, or she did
that because you know, you make excuses for different different things.
Speaker 2 (32:49):
Yeah.
Speaker 7 (32:49):
And and the fact that the symptoms changed each time.
Speaker 6 (32:52):
So if a child was.
Speaker 7 (32:54):
Sick and had strep infection that acted really weird and
then they could be better, and then the next time
they got pneumonia or something, and maybe they got aggressive,
and then you're going to the doctor says this child
is out of control.
Speaker 6 (33:07):
I don't know what's going on with them, and then
you might get.
Speaker 7 (33:10):
Like any DHD diagnosis or something. Right, Yeah, just constantly
morphing and changing. And so it does make it quite
difficult even for the practitioners because I don't know, you're
not presented with all of.
Speaker 2 (33:22):
The information, which is why I think going through.
Speaker 3 (33:25):
Some kind of a checklist, there was where we were
discussing and like we never learned about this in nursing
school or grad school. I mean the only.
Speaker 8 (33:34):
Reason, yeah, I had never heard of it is because
I have one patient who had it and my psychiatrist
is the one who told me about it, and I
looked it up and I'd never heard of it through
all my years of school.
Speaker 3 (33:46):
Yeah, So can you share again those two websites just
for parents out there and might need the information.
Speaker 7 (33:53):
Yes, definitely, pandas network dot org and then the other
one is Aspire A S P I r E dot
k C A R E. And I can't remember if
that one's a dot com. Honestly, I didn't rite it down,
but Aspire dot care.
Speaker 6 (34:12):
Should get you there.
Speaker 7 (34:14):
And P A N D A S Yes, yes, and
then they also have PANS P A N S is
a similar phenomenon but caused by not caused by strip. Luckily,
there's a lot of research going on now on both
of them. Stanford does a lot in Colombia for PANDAS.
(34:35):
But I think things are picking up because of COVID
and people having the long COVID and it's, you know,
a similar phenomenon going on as well. I don't I
don't know if you guys discussed it earlier too, that
it's the Beegel ganglia that's affected and that's the conductor
of your thoughts and your fight or flight.
Speaker 3 (34:53):
No, we just kind of talked about how the strip
hides in your brain and it makes it. Yeah, it's
an auto immune reaction. Is it started attacking itself.
Speaker 7 (35:03):
Yeah, So if you know, if you think about it
being the Beesel ganglia that's attacked, So it's.
Speaker 6 (35:09):
The conductor of your thoughts.
Speaker 7 (35:10):
So that's you know, you and I can think about
a million things at the same time. You know, you're
thinking about your grocery list, and you're watching TV, and
you're thinking about stuff for work, and you're doing all
this at the same time. These kids are having difficulty
doing that because they'll get stuck on one thought and
then the fight or flight is where most of these
(35:30):
symptoms that these kids are having comes from. If you
think about, what would you be like if you were
absolutely terrified, where would you want to be. You would
want a safe place, You would want your mother, You
would want to be in a certain place in your house.
Your skin would be sensitive if someone would touch you,
you know, you would feel chills.
Speaker 6 (35:48):
Your eyes but your pupils would.
Speaker 7 (35:50):
Be dilated, so that makes you more sensitive to light.
Your You know, your ears are sensitive because you're on
high alert constantly. They're stuck in this fight or flight mode.
And my daughter right now on this flare, I mean,
she will tell you I'm afraid, like you can see
fear in her eyes and she looks terrified.
Speaker 2 (36:12):
Well, our hearts go out to you, Reagan. We really
appreciate you sharing your journey with us and our listeners.
Speaker 1 (36:19):
Yeah, definitely, awarenesses and education is most important.
Speaker 6 (36:25):
Yeah, and you're not alone.
Speaker 7 (36:27):
If you're out there and you think you have.
Speaker 6 (36:29):
Somebody who has this, You're not alone.
Speaker 7 (36:31):
It is not rare, and I think one or two
hundred kids has this. Yeah, not rare, rarely diagnosed.
Speaker 1 (36:37):
Yah, exactly.
Speaker 2 (36:40):
Yeah, Reagan, thank you.
Speaker 3 (36:42):
We wish all the best for you and hope that
Leah gets the treatment she needs and gets better soon.
Speaker 6 (36:47):
Yeah, maybe in a couple of months. Will give you
an update.
Speaker 2 (36:50):
Okay, thank you so much.
Speaker 1 (36:52):
All right, take care, thank you, bye bye.
Speaker 2 (36:55):
That was just heartbreaking, right, Yes, but I think she
gave a lot of good information out there for people
to look at.
Speaker 1 (37:02):
Yeah, because if you look at it, how long it
takes to you know, get the diagnosis.
Speaker 2 (37:07):
Like she said, she was focused on the headache, right,
all the terror and a child goes through and then
the family. Yeah, definitely if you you know, if you
suspect this, go to those.
Speaker 3 (37:22):
Websites that she that she mentioned and google those symptoms
of PANS, p A N S and pandas p A
and d A S and take it to your physician
and say, look, this is what's going on.
Speaker 4 (37:37):
Because and if they can't help you, you know, go.
Speaker 1 (37:41):
Somewhere else, you know, find like she had a friend
that you know, hooked her up with her the doctor
in Chicago. So keep on fighting for your child and
a diagnosis and you're not alone.
Speaker 2 (37:54):
You're not alone.
Speaker 1 (37:55):
Thank you, thank you.
Speaker 2 (38:02):
At the Battle
Welcome to Psychobabble dash Me. I'm your host, Daniel Bartley
along with Marra mar Weeks.
Speaker 2 (00:12):
Hi everybody.
Speaker 3 (00:13):
Before we start, I'd like to put out a disclaimer
where we would that this episode may be triggering for
some people and is in no way meant to replace
mental health treatments.
Speaker 1 (00:23):
So today is our which episode sixt episode of season
two And I was approached by a friend of mine
that he asked us to do an episode on PANDIF,
which is pediatric autoimmune neuropsychiatric disorder. So I like, I
(00:43):
was talking to Merhramar before the podcast, and I said
that I hadn't really taken care of anybody with this,
so I had to do a lot of research on it.
But she has so or you know, she's seen a patient.
Speaker 3 (00:57):
One when I was training as a psychond and I
was doing child psychiatry and a child came in with
all these symptoms that we're going to discuss, and the
psychiatrists asked me if I'd ever heard of PANDAS and
I said no, and then that's when I first learned
about it.
Speaker 1 (01:13):
Yeah, So the main thing is definitely to get some
awareness out there for parents, for patients, for anybody that
has younger kids.
Speaker 4 (01:25):
Because it's it's generally ages three to twelve.
Speaker 1 (01:30):
And they say that boys are more likely common to
have it than girls. It did say in the research
that teenagers and adults don't generally have this, that's what
I but what I but they did say.
Speaker 2 (01:43):
That there can be like a recurrence of the symptoms. Yeah.
Speaker 4 (01:48):
I did read that too, and it's very rare.
Speaker 2 (01:50):
Yeah. Well actually it.
Speaker 3 (01:52):
Said accorded to a National Institute of Health, it said
one in two hundred children, which I think that's a lot.
Speaker 1 (01:58):
Yeah, I've read that, the one in two hundred, and
then I've read another one that it was a study
in two thousand and twenty three it said one in
twelve thousand.
Speaker 3 (02:10):
So well, the thing is Daniel and I were talking
about also that it's even though we've both I mean
we've read about it, I've seen it. It is a
controversial diagnosis, yes it is. So it's not listed in
the diet, the diagnostics, the statistical manual that we use
diagnose people. But I mean, in my opinion, my humble opinion,
(02:31):
it's a rule.
Speaker 4 (02:32):
Yes, I agree too.
Speaker 1 (02:34):
So this disorder is associated with straps.
Speaker 3 (02:39):
Right, cheptocopper infection. So what they say is how it
works basically, and then we can get into the symptoms
and stuff. Is so the scheptococcal bacteria survived in the
human body by putting molecules on their cell walls that
look almost exactly like the molecules found on the chain
on the child's heart, joint, skin, and brain tissue. And
(02:59):
they call this molecular mimicry. So it kind of hides
that way and your immune system can't recognize it. But
then when the bacteria is finally recognized by the immune system,
it starts to attack all the cells, including the child's
healthy cells.
Speaker 2 (03:16):
And so then when it.
Speaker 3 (03:19):
Starts attacking these foreign invaders, as they say, and these
mimic cells, they start to not be able to differentiate.
Speaker 2 (03:26):
So it becomes almost like an autoimmune disease.
Speaker 3 (03:30):
And some of these cross reactive antibodies that are targeting
not only the strep bacteria, they're also targeting the healthy cells.
Speaker 2 (03:42):
And that's what causes the symptoms of PANDACE.
Speaker 1 (03:45):
Yeah, and the symptoms are usually sudden and overnight, and said,
so it's gonna rapidly happen, and generally.
Speaker 3 (03:52):
After a strep infection section usually like the struck throat.
It says there's three stages mild, moderate, and severe, and
that's just basically when it starts, the symptoms start to
disrupt home life, in school life, and the symptoms are
only present for a few hours a day, and then
with the moderate symptoms, it becomes more distressing, starts expecting
(04:15):
their daily life. And they say the symptoms are present
fifty to seventy percent of the day, and then it's severe.
Speaker 2 (04:22):
They're having this.
Speaker 3 (04:23):
Symptoms seventy to one hundred percent of all waking hours.
Speaker 1 (04:26):
Yeah, so the symptoms of it are OCD.
Speaker 4 (04:31):
Ob sets up compulsive.
Speaker 1 (04:34):
The child may become moody, irritable, anxiety, have a lot
of separation issues, you know, once they're parent leaves, they
have all these fears, you know, things that they didn't have,
you know.
Speaker 2 (04:47):
Yeah, RCD sis.
Speaker 3 (04:48):
It's gonna be anything from you know, regular well, I
don't want to say regular OCD.
Speaker 2 (04:54):
Symptoms of like they have to do things in a
certain order too. They can also.
Speaker 3 (04:57):
Start to pick at their hair or pick at their skin.
They can become restrictive in their eating. Yeah, a lot
of motor and vodal vocal tics, so you know, twitching,
or saying things out of out of place where you
wouldn't normally, almost like a tourette.
Speaker 4 (05:17):
Yeah, exactly, increase risk.
Speaker 1 (05:21):
It said if someone has the family history of autumn
immune or rheumatic fever.
Speaker 2 (05:26):
It did say.
Speaker 1 (05:27):
Now, whenever I was reading the pandace, there's pandas and pans.
Did you read that the pants is more with lyme
disease and that so some.
Speaker 2 (05:39):
Other symptoms they could have.
Speaker 3 (05:40):
They could have going into having visual and auditory hallucinations.
Speaker 2 (05:44):
Since it can affect.
Speaker 3 (05:46):
The joint cells, they can have a deterioration of their
motor skills, sensitivity to light and sound, and they can
develop that they can regress developmentally, so they can start
bedway again. Yeah, baby talk, increased anxiety just I mean
(06:06):
everything you would. It basically covers a whole spectrum of
behavioral symptoms the kids. The child may complain of joint pain, fatigue,
head fatigue, headache, abdominal pain, throat pain.
Speaker 2 (06:20):
And they said, alright, some they develop a skin rash.
Speaker 3 (06:22):
Yeah, and then like you said, or maybe said that
to me privately before we start taking that, the symptoms
may come and go, so they might be okay for
long and they reappear.
Speaker 4 (06:33):
Yeah, even with treatment. It says that.
Speaker 1 (06:36):
So there's really no no tests, right, I mean tests
they do are.
Speaker 3 (06:43):
Basically just to cover all their basis. Obviously, they're gonna
do a STREP test because as we said, this often
happened after a strepping section. They can do it's called
an anti streptolycine. Oh tests, they can test for lime
disease because like you take the hands and then they
can do it cutting hand panel which tests for different
autoimmune disease.
Speaker 2 (07:03):
And then they do all those allergy.
Speaker 3 (07:05):
Tests these G eighty I, GM I G G B
twelve and vitamin D which is also part of the
treatment is targeting needs.
Speaker 4 (07:14):
In two of a good health history and physical and
all of that for sure.
Speaker 1 (07:22):
So now we'll get into some treatment with the panda.
So CBT so like tox therapy is a big one.
First you're gonna have to treat the strap with the antibiotics.
Speaker 4 (07:36):
I mean that's right.
Speaker 3 (07:37):
Actually the scyllins like the ylincillin, and if they're allergic
to the cephalos.
Speaker 1 (07:42):
For steroids, msades and said.
Speaker 5 (07:45):
They're not steroids a time planatories and then they do
say the s sris but they do say that the
kids are very sensitive and they have you have to
go you know, low and slow.
Speaker 4 (07:57):
Because they'll have severe side effects.
Speaker 3 (07:59):
Of the US treat the ticks and stuff like that. Yeah,
and then the the what they found now is the
IVY and you know glossins. Yeah, so they treat that
the infections and the immune autoimmune reaction. So you go
in and they give you your body zone basically.
Speaker 2 (08:21):
Yeah, which is very costly.
Speaker 4 (08:23):
I was reading that. It says no, but I guess it.
Speaker 1 (08:27):
Would probably depend on the plan, you know what I mean.
But when the research that I was reading was that
and it can cost up to twenty five thousand dollars,
it said, I'm confusion. I think so, yeah, that's what
it said. Yeah.
Speaker 3 (08:45):
They also said that you can use long term prophylactic
antibiotics because it can be successfully treated, but the child
may relapse, especially if they.
Speaker 2 (08:55):
Have another stop infection. It can make the symptoms more.
Speaker 1 (08:58):
Yeah, the second time around, the IG is usually more
severe cases. They do say ten to fifteen percent of
children require IV because whenever we talk about how many
children can get it, and with one dose it can
reduce the symptoms, it says.
Speaker 4 (09:18):
Within hours to day.
Speaker 1 (09:20):
But then sometimes people have to be on long term
maintenance things. So and then yeah, and I mean we
don't want to scare people.
Speaker 2 (09:29):
Most kids with strepped don't get panda.
Speaker 4 (09:32):
No, but it's very rare.
Speaker 2 (09:33):
Yeah.
Speaker 3 (09:33):
But if your kid had a strep infection and then
you know, a week later or two days later, they
start acting unusual.
Speaker 4 (09:41):
Yeah, moody, irritable.
Speaker 3 (09:43):
And I think part of the place where we live
is getting would be getting the right diagnosis. Yes, like
a doctor there would recognize and look for this. So
I think his parents are more informed.
Speaker 1 (09:52):
Yeah, for sure, like, hey, let's look at that. And
if you can't get an answer here, go somewhere else,
Go somewhere else. Because whenever I was doing the research,
even in the studies, it says like what do I
do if my doctor doesn't you know what I mean?
And then you know, some doctors you've got to think
that if they're not even that familiar with it, just
(10:14):
say they're gonna just think they have a psychiatric disorder.
Speaker 2 (10:18):
Well, I mean I never taught this.
Speaker 4 (10:20):
No, I wasn't either, huh huh.
Speaker 2 (10:22):
And the and the scary party is, like Danielle said,
how much it costs.
Speaker 3 (10:26):
So if you have a plan, and you have to
see doctors on that plan, and they're not giving you
the answers.
Speaker 2 (10:31):
I mean it's it's.
Speaker 4 (10:33):
Going to be paying out of pocket.
Speaker 2 (10:34):
Yeah. Who can afford that?
Speaker 1 (10:36):
Yeah, nobody, especially in this now day and age.
Speaker 2 (10:42):
Especially not where we live.
Speaker 4 (10:43):
No.
Speaker 2 (10:44):
So I think we have a guest coming on here. Yeah,
I want to say a little bit about what about that.
Speaker 1 (10:51):
So that's the person that approached me. It's a friend
of mine. His daughter is suffering from pandif we're going
to get more into what her symptoms and stuff are,
So his wife is going to come on because she's
been working with someone up I think that they do
go to up in Chicago working with somebody, a lady
that you know, really is an advocate for it and.
Speaker 2 (11:12):
Stuff like that.
Speaker 1 (11:13):
So we'll see what she has to say and and
maybe get some more information, yeah, resources, and just to
see kind of like what she's gone through.
Speaker 3 (11:32):
So we have our guest, Reagan on, who's going to
tell us about her experience with her child. Hi, Reagan,
thanks for coming on the show for us.
Speaker 6 (11:41):
Hello, thanks for having me.
Speaker 2 (11:43):
So I guess let's just start with it again. How
old is your daughter?
Speaker 7 (11:47):
She is now ten and a couple of weeks, she'll
be eleven. But our panda's journey started when she was nine.
It was a year ago in November.
Speaker 3 (11:56):
Okay, and did she have a strep infection prior to
the simple starting.
Speaker 7 (12:01):
She did, she seemed to me like she was perfectly amazing.
Over the weekend, we had a cheer competition. She had fun,
she was great. And then Monday morning at school, she
was crying in the office.
Speaker 6 (12:15):
Which is very atypical of her.
Speaker 7 (12:18):
She's a tough cookie. I feel like normally she would
have stuck things out through the day and been embarrassed.
Speaker 6 (12:24):
To go to the office.
Speaker 7 (12:26):
But she called and I had to go get her.
She didn't feel well. She kept saying our head hurt.
She didn't feel well, and we had a friend whose
daughter was tested positive or strep that week. I have
to say she didn't have normal strep symptoms. She never
complained of the source throat, she didn't have a fever
at that point.
Speaker 6 (12:47):
We made it to like.
Speaker 7 (12:49):
Friday morning, and she did test positive. But the only
reason I had her tested was because of the friend's
daughter having strepp. They put her on antibiotics and she
actually got worse.
Speaker 6 (13:02):
She did develop a fever.
Speaker 7 (13:04):
They switched her antibiotic, and then she just continued to
decline in the next few weeks.
Speaker 6 (13:11):
Constant, I don't feel good. She looked bad. Bags under
her eyes, had.
Speaker 7 (13:15):
This heavy expression, her face was puffy. The complaint of
the headache was just absolutely NonStop.
Speaker 6 (13:24):
So from there we looked for something to do for
the headache.
Speaker 7 (13:29):
We went back to the doctor. They did an X
ray of her chest in her head and they said
she had sign usitis. Changed antibiotic again, added pregna zone.
We had all kinds of blood work and cultures, mono lime, covid, EBB,
flu thyroid. At this point, she couldn't even tolerate going
(13:50):
to school. Then we ended up in the er and
they gave her migraine cocktails and I was so happy
because she looked peaceful and RESTful.
Speaker 6 (14:00):
She fell asleep and she woke up and.
Speaker 7 (14:02):
She immediately the second shop in her eyes said how
about her head hurt?
Speaker 6 (14:07):
And they did a CT scan there.
Speaker 7 (14:09):
And they did a different antibiotic. So this is like
a whole month long thing we had going on leading
up to her being impatient in the children's hospital. Again,
I'm stressed about this headache because it's her main complaints.
It's you know, she's like, it's over a ten, it's terrible.
So they were thinking migraine, and that's kind of how
(14:31):
they looked into it and treated it. They did, gosh,
what else did we have done? We had MRI MRV,
she saw ophthalmology, They gave her migraine cocktails, seizure medicines,
tripped hands, morphine xanax, like nothing.
Speaker 4 (14:49):
Helped this headache.
Speaker 3 (14:51):
Which does she display any besides the physical was she
had her mood altered it anyway?
Speaker 7 (14:58):
Well not yet, but now this is hindsight. So we're
stressed about this headache because I'm telling you it was
constant all day long my head I heard, but I
don't feel good.
Speaker 6 (15:07):
I had heard.
Speaker 7 (15:09):
And while we were in the hospital, they took her
off of antibiotics. They took her off of ibuprofen because
they were now telling me that it was probably medication
over you headache. And while we were there, then we
started with what if fears and difficulty going to bed,
and she started with some picks and everything got worse.
(15:33):
And at this point, again she was off of antibiotics
and she was off of of anti inflammatory, so her
obsessive compulsive symptoms?
Speaker 2 (15:46):
Were these overworrying about things? Obsessive thoughts about stuff?
Speaker 7 (15:51):
Yes, yes, I feel like something terrible is going to happen.
I don't know, I don't think that it is, but
I just have this overwhelming sphere that's something terrible is
going to happen.
Speaker 2 (16:01):
Right, And as a mother, how do you come for
a small child about that? Right?
Speaker 7 (16:05):
Yes, I mean you can. All you can do is
say that it's not and I'm here for you, And
I mean I'm still dealing with that today.
Speaker 6 (16:11):
What else do you do?
Speaker 7 (16:12):
What else do you say?
Speaker 6 (16:13):
How do you make them feel safe?
Speaker 2 (16:17):
Then?
Speaker 6 (16:18):
Let's see we left there.
Speaker 7 (16:20):
They were like, suck it up, go back to school.
Speaker 6 (16:22):
You just have migraine. And things still weren't good. We
were back in school, but I would have to go
with her.
Speaker 7 (16:29):
My mom would have to go with her. She had
sensitivities to light and sound and didn't want to be
in the lunch room or the art room, or in
gym class or places where she felt overwhelmed.
Speaker 2 (16:42):
And it is a complete opposite of what this.
Speaker 6 (16:45):
Oh my god, she is so outgoing.
Speaker 7 (16:48):
I feel like the way she was acting, she probably
would have made fun of somebody else acting this way,
having me in school.
Speaker 6 (16:54):
I mean she was in the fourth grade, you know,
walking under the classroom. Yeah, a complete one sixty.
Speaker 2 (17:02):
A lot of anxiety and yes, yes.
Speaker 7 (17:05):
Yes, And anxiety is something like you can't even describe.
Speaker 4 (17:11):
I mean, it's worse than a toddler.
Speaker 6 (17:13):
With her parents.
Speaker 2 (17:14):
So she's like she had regressed.
Speaker 7 (17:17):
Oh yeah, And speaking of regression, she had baby talk
or she would talk and I'd call it like an
Elmer flood kind of voice or sort of nasally right. Yeah,
regression for sure.
Speaker 3 (17:32):
And she was still having at this point, was she
still having ticks and such?
Speaker 7 (17:38):
Yeah, So her she would like shake her hand and
she would like punch her arm and crack all of
her knuckles and back and crack things sort of like
a tick. I don't know if that was more of
a stemming or if it was the Chorea, or if
(17:58):
it actually was a tick. It was like she couldn't
stand the pain, Like she was in so much pain
that she would like shake her hands.
Speaker 2 (18:05):
So she d enjoyed pain also, oh yeah, oh yeah, anything?
Speaker 7 (18:11):
Oh no, no, sleeping, would not sleep through the night,
difficult to get to bed, wouldn't stay asleep, ended up
in our bed every night. No longer wanted to go
to dance. She loved dancing, wouldn't go there. Does complete
loss of interest in her friends and things that she
liked doing. I mean, even if she was at home
(18:32):
with us, was like, let's go shopping at Target. You
know that's fun and amazing and we love to shop.
Speaker 6 (18:37):
No way, wouldn't do it.
Speaker 3 (18:39):
And how did this affect because she has a sister. Correct,
she does.
Speaker 7 (18:43):
And that's the hard thing with Pandace is it really
does affect the whole family, the whole family dynamic. You know,
she lost her sister, and the older one feels like
she lost her sister, and she probably feels like she
lost me in the process, because.
Speaker 2 (19:00):
Become your whole life focus. Yeah, yeah, how long until
you got the right diagnosis? All right?
Speaker 4 (19:08):
So that was November.
Speaker 6 (19:11):
In it was like the day after Christmas.
Speaker 7 (19:13):
Actually, we decided to go to Cleveland clinic because we
still were miserable searching for answers. You know, you look
up online if you have a headache for so many
days when you do go to the emergency room, I
mean we've been there, We've been impatient. So we saw
neurology at Cleveland Clinic.
Speaker 6 (19:30):
I really liked the doctor.
Speaker 7 (19:31):
He spent lots of time with us, went over lots
of things, and he said that he thought that her
headaches were anxiety induced from a type A personality. And
some of that sort of was making sense because at
this point I wouldn't have described her as anxious. But
(19:55):
that made me sit back and kind of think like okay,
and he's like, well, look how she's like clinging to you,
but look how she's sitting next to you. And then
I'm like, okay, separation, anxiety, Like more things started clicking
with me. I had looked up pandas previously, just because
I was lucky enough to know that she.
Speaker 6 (20:12):
Just had strip so just more pieces for the puzzle.
Speaker 7 (20:16):
Were falling into the place for us.
Speaker 6 (20:20):
He put her on Zoloft.
Speaker 7 (20:23):
And she was on that for I probably had her
on it for two.
Speaker 6 (20:28):
To three weeks, and she was worse.
Speaker 7 (20:31):
She became agitated and manic on that, and I was like,
there's you know, they got me thinking about the anxiety,
but I'm like, there's more to this.
Speaker 6 (20:43):
So it was January and.
Speaker 7 (20:45):
That's when we got in contact with a pandas doctor out.
Speaker 2 (20:48):
Of Chicago and that's only because you knew to do that.
Speaker 7 (20:53):
Yes, yeah, I mean again, I have two things that
I feel very fortunate about. One, she had a document
a case of stress that I'm very lucky that we
found out she had that. And number two, I have
a medical background, so I feel like I knew enough
to dig more.
Speaker 2 (21:09):
Right.
Speaker 7 (21:10):
And then we have a family friend who knew somebody
whose child had pandas they put me in contact with her.
She's an advocate for families and she has been just
the best resource and support system for me.
Speaker 6 (21:25):
And she's going to put me in touch with her
physician in Chicago.
Speaker 3 (21:28):
Now is she does she do this just because I
was going to ask you to share her her name
for her organization or is it just a private thing?
Speaker 6 (21:40):
I will have to check with her about that.
Speaker 7 (21:43):
She probably not there.
Speaker 2 (21:45):
There's just not a lot of resources out there for people.
Speaker 7 (21:47):
But okay, yes, yes, there are two places that have
been really helpful for me. Two websites, Panda'snetwork dot org.
Speaker 6 (21:58):
Started by Diana Pulman as amazing.
Speaker 7 (22:01):
And Aspire a s p i r e. Dot Care
is also very amazing. All kinds of great resources and
information on there for everybody for teachers, for parents, for caregivers,
for medical professionals.
Speaker 6 (22:22):
Those are really great website.
Speaker 2 (22:24):
So then thank you for that.
Speaker 3 (22:25):
So then Reagan, this you got in contact with this
uh gettian in Chicago.
Speaker 7 (22:33):
Yeah, so this we are seeing doctor Kovosovic, or they
call him doctor K in Chicago. He's one of the
first ones. I mean, he's been doing this for twenty years.
And so what he had us do first was what
they call an antibiotic test. So he put her on
(22:53):
omnosp for two weeks and then we were to report
back to him whether we noticed as there was any improvement,
and there was. I can't tell you like that cured
her or anything, but I feel like her personality was
kind of shining through, peeking through the cracks a lot
(23:14):
more with that. So we talked to him and he
had us continue the antibiotic for a month. He also
had us get her tonsils removed. Her tonsils were not
what she would call extremely large. It wasn't like a
kid who you look at her throat and be like, whoa,
you know, she's obviously hat strup a billion times.
Speaker 6 (23:33):
But when they were removed, the doctor describes them.
Speaker 7 (23:37):
As smushy and diseased and it usually only takes I
think about twenty minutes to do to dig out your
tonsils and adenoids, and it took them an hour because
he was scraping all of that did smushy tissue. That
pythology they did, and you would not believe the stuff that.
Speaker 6 (23:59):
You found in there.
Speaker 3 (24:01):
I mean.
Speaker 7 (24:02):
Strange bacteria that are found in animals.
Speaker 6 (24:06):
Even I mean like really really weird stuff.
Speaker 7 (24:09):
I was like, I can't believe that this was in
your body.
Speaker 6 (24:13):
After that, that was we had really good results after that.
Speaker 7 (24:18):
Honestly, she was back in school.
Speaker 6 (24:20):
I'm not saying she was back to herself, but we were.
Speaker 7 (24:25):
Completely functional at that point, doing pretty well. And then
the next thing that we did was IVIG at the
beginning of May, and as I said, at that point,
she was pretty good.
Speaker 6 (24:40):
She was back in school.
Speaker 7 (24:41):
After we had the IVIG, she had a week of regression.
Speaker 6 (24:46):
And I was like, what the heck did we do?
And then the weeks.
Speaker 7 (24:49):
After that she just got better and better. I would
say a month after she was back, she was back.
I'm not saying one hundred per but she was really back.
And that continue to improve over the next month, month,
five or six. That was taking us to like October
(25:10):
of this past year. I think she was near one
hundred percent herself.
Speaker 3 (25:16):
Amazing And did they only do the the iv id
AID treatment once or yes?
Speaker 7 (25:23):
So and again I'm coming to you as a mother
and not as a professional by any means.
Speaker 6 (25:28):
I'm we're still very new to all of this too.
Doctor K does it one time. He does high dose
over the course of two days with the hopes that
they're going to continue to improve.
Speaker 7 (25:42):
Actually through the year, he marks success at three months four.
I think kids under thirteen and over thirteen at six
months if you have eighty percent improvement in symptoms. So
she was success for sure. But that brings us to
our present. Right before Christmas, she had COVID and she
(26:08):
again called me from school.
Speaker 6 (26:09):
It was like deja voo and.
Speaker 7 (26:11):
Crying and I don't feel good in my head, hurts,
and I thought we have strapped because they warned us,
you know, it's not going to be the sore th road,
It's going to be all of these narro psychiatric symptoms.
Speaker 6 (26:21):
So immediately I went and had her tested.
Speaker 7 (26:24):
And here it was COVID, but she was presenting the
same way. Within the week she resolved was back to normal.
We had a wonderful holiday season.
Speaker 6 (26:36):
She was great.
Speaker 7 (26:38):
Went back to school in January and she called again crying,
I'm not feeling well.
Speaker 2 (26:45):
She ended up with STRAP.
Speaker 7 (26:48):
So we are in hell again currently and trying to
get iv ig again.
Speaker 3 (26:55):
So all the symptoms that she previously had returned with
the Yeah.
Speaker 7 (27:00):
But I have to say that another hard thing with
this disorder is, you know, there's the waxing and waning.
Speaker 6 (27:07):
Things seem to come and go.
Speaker 7 (27:09):
Things seem to morph or change. So a lot of
it is similar, but she's.
Speaker 6 (27:15):
Having a lot of.
Speaker 7 (27:17):
Oh gosh, it's sometimes it's like somebody just walked up
to her and scared her, and she'll like jump and scream,
and then she'll like look around, and I'm like, what
are you doing? Why are you looking around? She said,
I'm making sure it's safe.
Speaker 2 (27:31):
Is she having hermations?
Speaker 6 (27:33):
I think very mild.
Speaker 7 (27:35):
I mean she's not going to say I see this
thing over there.
Speaker 6 (27:38):
But the way that her eyes are a lot of times.
Speaker 7 (27:40):
And the way that they'll move quickly or she can't focus.
She currently can't read. She's lost her ability to write.
We didn't have any difficulties with that previously.
Speaker 6 (27:51):
I'm back sleeping in bed with her every night. It's bad.
Speaker 7 (27:56):
I mean, we were one hundred percent and now we're
I feel like we're back to where one.
Speaker 2 (28:00):
So what is the I mean, this is a very
personal question. So what is the polo to get the
IVY again? Is it insurance or is it just noticing?
Speaker 6 (28:10):
All right?
Speaker 7 (28:11):
Well, he wanted us, the doctor wanted us to be
on the antibiotic for a month. And I'm a pharmacist
and I didn't realize all of this, but antibiotics and these.
Speaker 6 (28:22):
Kids are neuroprotective.
Speaker 7 (28:25):
I don't know if you went into the mechanism of
the whole thing, how your body's creating these tea cells
to fight the strip or whatever, and you know, different
things in pans versus pandas. But these antibodies then start
attacking your body. They attack the brain and cause inflammation.
So he said that the half life of the tea
(28:46):
cells are actually around I believe he said twenty twenty
nine days. So we wanted her on the antibiotic for
a month, and he really thought that she would see improvement.
That this is more of a relapse, This is more
of a flare which you can see or than a relapse,
but she did not improve, so.
Speaker 2 (29:06):
That when we're back on oral antibiotics when she yes, yes, and.
Speaker 7 (29:10):
Actually after the ivig she also was on a daily
antibiotic as kind of a preventative measure to China prevent struck.
Speaker 2 (29:19):
Right.
Speaker 3 (29:20):
Yeah, so now you're just waiting to do so.
Speaker 6 (29:26):
Yeah.
Speaker 7 (29:26):
So now we had blood work done again and then
as soon as that comes back, and we are going
to try to get the letter of medical necessity to
the insurance and then get in as soon as possible.
It's expensive, soel.
Speaker 1 (29:41):
I've read some research where it could be up to
twenty five thousand dollars.
Speaker 2 (29:46):
Yeah, yeah, is that right? Yeah, okay, yeah.
Speaker 7 (29:49):
And part of the reason for being so expensive it's
it's made from human blood products. Yes, and I think
it's thousands of people to create it takes to do it,
so yeah, yeah, so that's what makes it so expensive.
Speaker 3 (30:07):
So this, this whole process has been going on for
over a year, correct.
Speaker 7 (30:13):
Yes, Yeah, ups and downs over the course of just
over a year.
Speaker 3 (30:17):
Oh my heart goes out to you. I can't imagine. Yeah,
and you have to fight, obviously with the insurance to
get it covered because who had dollars sitting in the bank.
Speaker 7 (30:28):
Right, and I don't know how that's going to be.
My fear is that it's been less than a year
since she's had it. I don't know if that will
be an issue with the insurance or not.
Speaker 3 (30:39):
What kind of doctor is this doctor that you're seeing
in Chicago? Is he a neurologist? Is he a PSYCHIATRISTA
is not?
Speaker 7 (30:45):
He actually is pediatrician who had a friend's child who
had this twenty years ago and then just you know,
became his mission.
Speaker 2 (30:57):
God bless him.
Speaker 3 (30:58):
Yes, yeah, Well, is there anything else you'd like to
tell us? We really appreciate you sharing your journey.
Speaker 2 (31:06):
Yeah.
Speaker 7 (31:06):
Sure, I'm glad I didn't get too emotional there at
the end, since I'm like, I'm the thick of it again.
Speaker 4 (31:12):
I wanted to.
Speaker 7 (31:12):
In October, I would have given you such a story
of hope. But now that we're back in then yeah, yeah,
and she did, and I know that.
Speaker 6 (31:21):
This is going to help.
Speaker 7 (31:22):
I'm telling you, she was one hundred percent and we
had her back. It was amazing.
Speaker 6 (31:28):
I wanted to look through.
Speaker 7 (31:29):
I wrote down just a couple of thoughts earlier that
I didn't want to miss.
Speaker 6 (31:35):
Oh one sign.
Speaker 7 (31:37):
Of strip that I think a lot of people don't
know is peeling of fingertips and hands, So just for
people to be aware of that, you know, if these
kids don't always present with a soort throat, sometimes it's
stomach ache instead. Also, when I look back and my
daughter's medical charts, we had some stomach issues going on
(31:58):
in the spring, which I had completely forgotten about, which
I'm sure with all of this.
Speaker 6 (32:03):
We just had no idea.
Speaker 7 (32:07):
Yeah, I wish that there was some kind of a
checklist that practitioners could have, you know, if a child
was presenting something that just seemed odd.
Speaker 2 (32:19):
I think a lot of people aren't aware of that exists.
Speaker 6 (32:23):
Yeah, And I think it's hard.
Speaker 7 (32:24):
I mean, even as a parent, like I was stuck
on this headache, it was hard to put all the
pieces together and all of these symptoms that don't seem
related that you.
Speaker 2 (32:33):
Kind of in the middle of it, you're yeah.
Speaker 7 (32:36):
Yeah, and he looked back on it because you're like, oh, no,
she acted like that because of this, or she did
that because you know, you make excuses for different different things.
Speaker 2 (32:49):
Yeah.
Speaker 7 (32:49):
And and the fact that the symptoms changed each time.
Speaker 6 (32:52):
So if a child was.
Speaker 7 (32:54):
Sick and had strep infection that acted really weird and
then they could be better, and then the next time
they got pneumonia or something, and maybe they got aggressive,
and then you're going to the doctor says this child
is out of control.
Speaker 6 (33:07):
I don't know what's going on with them, and then
you might get.
Speaker 7 (33:10):
Like any DHD diagnosis or something. Right, Yeah, just constantly
morphing and changing. And so it does make it quite
difficult even for the practitioners because I don't know, you're
not presented with all of.
Speaker 2 (33:22):
The information, which is why I think going through.
Speaker 3 (33:25):
Some kind of a checklist, there was where we were
discussing and like we never learned about this in nursing
school or grad school. I mean the only.
Speaker 8 (33:34):
Reason, yeah, I had never heard of it is because
I have one patient who had it and my psychiatrist
is the one who told me about it, and I
looked it up and I'd never heard of it through
all my years of school.
Speaker 3 (33:46):
Yeah, So can you share again those two websites just
for parents out there and might need the information.
Speaker 7 (33:53):
Yes, definitely, pandas network dot org and then the other
one is Aspire A S P I r E dot
k C A R E. And I can't remember if
that one's a dot com. Honestly, I didn't rite it down,
but Aspire dot care.
Speaker 6 (34:12):
Should get you there.
Speaker 7 (34:14):
And P A N D A S Yes, yes, and
then they also have PANS P A N S is
a similar phenomenon but caused by not caused by strip. Luckily,
there's a lot of research going on now on both
of them. Stanford does a lot in Colombia for PANDAS.
(34:35):
But I think things are picking up because of COVID
and people having the long COVID and it's, you know,
a similar phenomenon going on as well. I don't I
don't know if you guys discussed it earlier too, that
it's the Beegel ganglia that's affected and that's the conductor
of your thoughts and your fight or flight.
Speaker 3 (34:53):
No, we just kind of talked about how the strip
hides in your brain and it makes it. Yeah, it's
an auto immune reaction. Is it started attacking itself.
Speaker 7 (35:03):
Yeah, So if you know, if you think about it
being the Beesel ganglia that's attacked, So it's.
Speaker 6 (35:09):
The conductor of your thoughts.
Speaker 7 (35:10):
So that's you know, you and I can think about
a million things at the same time. You know, you're
thinking about your grocery list, and you're watching TV, and
you're thinking about stuff for work, and you're doing all
this at the same time. These kids are having difficulty
doing that because they'll get stuck on one thought and
then the fight or flight is where most of these
(35:30):
symptoms that these kids are having comes from. If you
think about, what would you be like if you were
absolutely terrified, where would you want to be. You would
want a safe place, You would want your mother, You
would want to be in a certain place in your house.
Your skin would be sensitive if someone would touch you,
you know, you would feel chills.
Speaker 6 (35:48):
Your eyes but your pupils would.
Speaker 7 (35:50):
Be dilated, so that makes you more sensitive to light.
Your You know, your ears are sensitive because you're on
high alert constantly. They're stuck in this fight or flight mode.
And my daughter right now on this flare, I mean,
she will tell you I'm afraid, like you can see
fear in her eyes and she looks terrified.
Speaker 2 (36:12):
Well, our hearts go out to you, Reagan. We really
appreciate you sharing your journey with us and our listeners.
Speaker 1 (36:19):
Yeah, definitely, awarenesses and education is most important.
Speaker 6 (36:25):
Yeah, and you're not alone.
Speaker 7 (36:27):
If you're out there and you think you have.
Speaker 6 (36:29):
Somebody who has this, You're not alone.
Speaker 7 (36:31):
It is not rare, and I think one or two
hundred kids has this. Yeah, not rare, rarely diagnosed.
Speaker 1 (36:37):
Yah, exactly.
Speaker 2 (36:40):
Yeah, Reagan, thank you.
Speaker 3 (36:42):
We wish all the best for you and hope that
Leah gets the treatment she needs and gets better soon.
Speaker 6 (36:47):
Yeah, maybe in a couple of months. Will give you
an update.
Speaker 2 (36:50):
Okay, thank you so much.
Speaker 1 (36:52):
All right, take care, thank you, bye bye.
Speaker 2 (36:55):
That was just heartbreaking, right, Yes, but I think she
gave a lot of good information out there for people
to look at.
Speaker 1 (37:02):
Yeah, because if you look at it, how long it
takes to you know, get the diagnosis.
Speaker 2 (37:07):
Like she said, she was focused on the headache, right,
all the terror and a child goes through and then
the family. Yeah, definitely if you you know, if you
suspect this, go to those.
Speaker 3 (37:22):
Websites that she that she mentioned and google those symptoms
of PANS, p A N S and pandas p A
and d A S and take it to your physician
and say, look, this is what's going on.
Speaker 4 (37:37):
Because and if they can't help you, you know, go.
Speaker 1 (37:41):
Somewhere else, you know, find like she had a friend
that you know, hooked her up with her the doctor
in Chicago. So keep on fighting for your child and
a diagnosis and you're not alone.
Speaker 2 (37:54):
You're not alone.
Speaker 1 (37:55):
Thank you, thank you.
Speaker 2 (38:02):
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