Latest / Beautifully Complex / 369: PANDAS: When Strep Inflames Your Child's Brain, with Andrea Jones, Rn, BSN, FHP

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369: PANDAS: When Strep Inflames Your Child's Brain, with Andrea Jones, Rn, BSN, FHP · Beautifully Complex

0:01
Speaker 1: Your child's brain can change overnight, and it has nothing
0:05
Speaker 1: to do with how you're parenting. This is a topic
0:08
Speaker 1: that flies under the radar for so many families when
0:12
Speaker 1: a strep infection sets off a sudden, dramatic shift in
0:16
Speaker 1: a child's brain and behavior. We're talking rage, anxiety, sudden
0:22
Speaker 1: loss of skills, and why the usual parenting playbook doesn't
0:26
Speaker 1: work when a kid's brain is in crisis. If you've
0:31
Speaker 1: ever had a gut feeling that something more was going
0:34
Speaker 1: on with your kid, this episode is for you. I'm
0:38
Speaker 1: talking with nurse and functional medicine practitioner Andrea Jones, whose
0:43
Speaker 1: own daughter was diagnosed with pandas in twenty eighteen. We're
0:47
Speaker 1: talking about what it actually is, what recovery looks like,
0:51
Speaker 1: and how to parent through it. I'm Penny Williams, and
0:57
Speaker 1: this is beautifully complex. Welcome back to beautifully Complex everyone.
1:04
Speaker 1: I have Andrea Jones back with me on the podcast
1:09
Speaker 1: to talk about pandas this time and what it is.
1:12
Speaker 1: And even more importantly, I think, is what science can
1:16
Speaker 1: we look for in our children and if they have pandas,
1:19
Speaker 1: what can we do? So, Andrea, will you start by
1:23
Speaker 1: letting everyone know who you are and what you do
1:26
Speaker 1: for anybody who didn't listen the last time, who doesn't
1:29
Speaker 1: know you.
1:30
Speaker 2: Yeah, absolutely so. I my name is Andrea Jones. I
1:34
Speaker 2: am a registered nurse Bachelors of Science in nursing. Not
1:38
Speaker 2: that that matters for everybody listening, but I went to
1:41
Speaker 2: school for a fair amount of time to get my
1:44
Speaker 2: nursing degree and spent the first fifteen years of my
1:47
Speaker 2: career working bedside in pediatrics before leaving the hospital setting
1:52
Speaker 2: and launching a functional medicine practice. So now I work
1:56
Speaker 2: primarily with women and children, with women on a lot
1:59
Speaker 2: of complex health issues, hormone balancing stuff, and then with
2:03
Speaker 2: families where children also that have complex medical diagnoses and
2:08
Speaker 2: really just getting to the root of those issues. So
2:13
Speaker 2: I left the hospital setting for a lot of reasons.
2:15
Speaker 2: But one of those reasons I actually the timing is
2:18
Speaker 2: really weird when I look back, because I actually resigned
2:22
Speaker 2: and then my daughter got sick two months later, and
2:24
Speaker 2: so I really like, see, just there was kind of
2:28
Speaker 2: a grace on me not having to work thirteen hour shifts,
2:32
Speaker 2: but I didn't know that that was coming. And so we'll,
2:34
Speaker 2: you know, we'll talk a little bit more about that.
2:36
Speaker 2: But that's what I do. And I've got two girls,
2:41
Speaker 2: one of which who is recovering from PANDAS and was
2:44
Speaker 2: diagnosed with PANDAS in twenty eighteen.
2:47
Speaker 1: It's been several years then, yeah, yeah, yeah, half for
2:50
Speaker 1: life at this point. Yep. Wow, So talk to us
2:54
Speaker 1: a little bit about what PANDAS is.
2:56
Speaker 3: First, absolutely, yeah.
2:58
Speaker 2: So you know, PANDAS has been since the early nineteen eighties,
3:02
Speaker 2: and it stands for pediatric autoimmune neuropsychiatric disorder associated with STREP. Now,
3:09
Speaker 2: there's kind of two umbrella terms that are people are
3:13
Speaker 2: hearing more commonly now, which is PANS PANDAS, and PANS
3:18
Speaker 2: is pediatric autoimmune neuropsychiatric syndrome, which can be from mold, lime,
3:24
Speaker 2: or any other type of infection. But essentially it's the
3:27
Speaker 2: same diagnostic criteria, which is there is a preceding infection.
3:33
Speaker 2: For my daughter, it was STREP. For many kids, it's
3:35
Speaker 2: strap and through molecular mimicry, which is basically, the antibodies
3:41
Speaker 2: to STREP look very similar to specific cells in your brain,
3:45
Speaker 2: and the body begins to attack those in the basal ganglia,
3:48
Speaker 2: and so that for many kids looks like obsessive compulsive
3:52
Speaker 2: disorder anxiety meltdown's rage. There's quite a few symptoms that
3:59
Speaker 2: would fall in this case category, but the diagnostic criteria
4:03
Speaker 2: is that you know that acute phrase in there, which
4:06
Speaker 2: is that it typically happens very very quickly after that
4:11
Speaker 2: strep infection. Now, I think that personally that needs to change. Professionally,
4:16
Speaker 2: what I've seen is that that's it's not always acute.
4:18
Speaker 2: Sometimes it's oh, we look back and he was getting
4:22
Speaker 2: sick a lot, you know, and then his behavior started
4:25
Speaker 2: to change, and then they get the diagnosis of pandas.
4:29
Speaker 2: For my daughter, it was overnight, like, within two days
4:32
Speaker 2: of her getting a strep infection, getting antibiotics, she was
4:36
Speaker 2: not the same. And so it was a very immediate,
4:41
Speaker 2: observable difference in her that scared the ever living daylights
4:46
Speaker 2: out of me. And part of that was because I
4:48
Speaker 2: knew what PANDAS was. I had been trained to, you know,
4:51
Speaker 2: observe for it in pediatrics, but in our hospital setting,
4:55
Speaker 2: we weren't really and it could because it's mainly diagnosed
4:59
Speaker 2: out patient. That's probably why I didn't see it very much.
5:02
Speaker 2: But I didn't see it a lot in my patient care.
5:05
Speaker 2: I think I maybe had one patient that actually was
5:07
Speaker 2: diagnosed with that out of thousands and thousands of kids,
5:11
Speaker 2: and so but I knew, I knew that it existed,
5:14
Speaker 2: and I knew that I needed to take this very seriously,
5:18
Speaker 2: that something pretty significant had just happened in her brain
5:22
Speaker 2: and you know, just everything that comes with that, which
5:26
Speaker 2: is the how long is it going to take to heal?
5:29
Speaker 2: And crap? Now we're up a creek and what do
5:32
Speaker 2: we do? So that's yeah, that's I hope I answered
5:36
Speaker 2: the question. But that that is the diagnostic criteria for
5:40
Speaker 2: pandas and what it looked.
5:41
Speaker 3: Like for us.
5:42
Speaker 1: Is there a medical test?
5:45
Speaker 3: There are?
5:46
Speaker 2: There is not a because it's it's technically a clinical diagnosis,
5:50
Speaker 2: meaning that we're looking at presentation of symptoms. But there
5:53
Speaker 2: are several tests that we can do to confirm or
5:57
Speaker 2: validate the diagnosis. One of those is a antibody test.
6:01
Speaker 2: And so especially you know, if I have a kid
6:04
Speaker 2: come to me and they're like, this was pretty abrupt,
6:06
Speaker 2: like you know, and kids can be silent carriers of
6:09
Speaker 2: strap which they may never have actually had a sore throat,
6:12
Speaker 2: which is weird, but it does happen.
6:14
Speaker 1: Yeah, I have one of those.
6:16
Speaker 2: Yeah, and it happens a lot actually a lot more
6:19
Speaker 2: than you would think, and so it's a very cheap
6:22
Speaker 2: and easy test to do, meaning most physicians can order
6:25
Speaker 2: it pretty easily and get it covered by insurance. But
6:28
Speaker 2: that's the first thing we'd want to rule out is
6:30
Speaker 2: if they have elevated strap antibodies, that should warrant further
6:34
Speaker 2: investigation on what we're dealing with. And then if we
6:38
Speaker 2: really want to dig in, like much much deeper, we
6:42
Speaker 2: might do something like a neural zoomer, which is where
6:44
Speaker 2: we're actually looking at the neurotransmitters themselves and if there
6:48
Speaker 2: are antibodies against the neurotransmitters, which is amazing that we
6:52
Speaker 2: can see that. It's amazing that we can get that information.
6:55
Speaker 1: Is that a blood test?
6:56
Speaker 2: It is a blood test, Yeah, for those that are
6:59
Speaker 2: familiar with it. It's similar to the Cunningham panel, which
7:03
Speaker 2: is more commonly used in conventional medicine, but the neural zoomer,
7:07
Speaker 2: I would say, is a little bit more specific, so
7:11
Speaker 2: not all physicians will order that to my understanding.
7:15
Speaker 1: And like you've talked about that, really abrupt changes in
7:21
Speaker 1: behavior might happen, and it sounds like anxiety things that
7:25
Speaker 1: feel OCD level all. Yes, is there anything else that
7:30
Speaker 1: might signal to a parent, hey, I should think about
7:34
Speaker 1: pandas or I should talk to a clinician about this possibility.
7:38
Speaker 2: Yeah, and I wish I had pulled up the list
7:41
Speaker 2: of symptoms because there's quite a few. For our daughter,
7:44
Speaker 2: it wasn't actually anxiety. It was rage, like she would
7:47
Speaker 2: just scream for hours. And she was eight at that point,
7:51
Speaker 2: so it's like we are out of that stage, Like
7:53
Speaker 2: we're not in this stage of tantrums and meltdowns, you know,
7:58
Speaker 2: and completely unreasonable, completely unreachable. And I remember like looking
8:04
Speaker 2: at her and feeling like she's in there, but I
8:06
Speaker 2: can't get to her, like I can't. There was like
8:10
Speaker 2: this glossy look in her eyes, and actually, looking back
8:13
Speaker 2: at pictures now I realize it wasn't just my perception,
8:16
Speaker 2: Like she actually did kind of have this glassy kind
8:19
Speaker 2: of look to her eyes, and that's very common. I
8:22
Speaker 2: didn't know that at the time, but that is common.
8:24
Speaker 2: It's very common for these kids to have this kind
8:27
Speaker 2: of like we call it an allergic shiner, but it's
8:29
Speaker 2: like purple under their eyes. Sometimes their eyes are really bloodshot.
8:34
Speaker 2: Emotional regressions where they can't sleep alone at night, basically
8:39
Speaker 2: attachment anxiety, so where they're not wanting you to leave.
8:43
Speaker 2: So like she went through this huge period where I
8:46
Speaker 2: couldn't leave her at school, all of a sudden, she
8:48
Speaker 2: would have tremendous amount of separation anxiety that she'd never really.
8:52
Speaker 2: I mean, she was my kid that when I dropped
8:54
Speaker 2: off at the nursery at eleven month, she's like my mom, you.
8:56
Speaker 3: Know, like super easy going.
9:00
Speaker 2: For a lot of kids, they experience bed wedding where
9:03
Speaker 2: they weren't before, or peeing a lot and where it
9:07
Speaker 2: looks like they have a bladder infection but they don't,
9:10
Speaker 2: and so there's a lot of I mean, the thing
9:13
Speaker 2: that I would say is that it really does impact
9:16
Speaker 2: almost every system in the body for these kids. But
9:21
Speaker 2: what we're looking for in the diagnostic criteria is that
9:24
Speaker 2: behavior shift, right where maybe all of a sudden they're
9:28
Speaker 2: complaining of intrusive thoughts or hyperactivity where they can't settle down.
9:33
Speaker 2: Or noise sensitivity. That was a big one, Like she
9:37
Speaker 2: didn't ever have noise sensitivity really before that, and now
9:41
Speaker 2: all of a sudden, noises are really bothering her. So
9:44
Speaker 2: I can list some resources for like the symptom profile
9:49
Speaker 2: for families if that would be helpful. But those are
9:51
Speaker 2: common things that we see with PANDAS.
9:53
Speaker 1: Yeah, we can link some stuff up in the show
9:55
Speaker 1: notes on the website so that everybody has more information
9:58
Speaker 1: if they want to, they want to go and check
10:00
Speaker 1: that out, yeah, and investigate more. I'm just wondering, as
10:03
Speaker 1: you're talking, is it something that could resolve on its
10:08
Speaker 1: own if you didn't catch it?
10:11
Speaker 4: Could it resolve on its own the strip or the
10:15
Speaker 4: PANDAS PANDAS From what I have read and seen, No, No,
10:20
Speaker 4: it does not.
10:21
Speaker 2: There's some like anecdotal evidence that it resolves in puberty,
10:27
Speaker 2: but that's not been my observation. My observation has been
10:30
Speaker 2: that it actually just morphs into something different, gotcha where
10:34
Speaker 2: you know, you have a little bit less hormonal chaos,
10:36
Speaker 2: you know, once you get through puberty, But it's the
10:40
Speaker 2: mental health issues are there. They just look a little
10:42
Speaker 2: bit different. And so I personally and professionally don't believe
10:46
Speaker 2: that because of what I've seen, not just with my
10:49
Speaker 2: own kid, but with all of the other families you
10:52
Speaker 2: know that I'm in contact with, it doesn't. It's one
10:55
Speaker 2: of those things that it really does have to be
10:57
Speaker 2: treated and it has to be treated medically, not just
11:02
Speaker 2: like a psychiatric illness where it's like, Okay, we might
11:05
Speaker 2: need meds, we might need therapy, the standard things that
11:09
Speaker 2: they might need. They're also going to need medical treatment
11:12
Speaker 2: because it is a medical illness.
11:14
Speaker 1: Right, I asked, because as you were talking, my kid,
11:18
Speaker 1: who is neurodivergent, is a strep carrier, never has had
11:22
Speaker 1: a symptom. Ever, my other kid had like constant strap
11:28
Speaker 1: for a long time. And what we realized was they
11:30
Speaker 1: were sharing a tube of toothpaste and he we didn't know,
11:33
Speaker 1: like we didn't know at a time that you could
11:36
Speaker 1: have strap and not have strap, right, and so he
11:39
Speaker 1: was just giving it right back to her over and over.
11:41
Speaker 1: But a lot of the things that you talked about
11:44
Speaker 1: at one point in time really fit for him, like
11:47
Speaker 1: really different stuff. But it has resolved over time. And
11:52
Speaker 1: so that's why I asked, And it's a great question. Yeah.
11:55
Speaker 1: I just wondered, like, huh, could it well?
11:57
Speaker 2: And I even looked back at my eyes. I had
12:00
Speaker 2: strap all the time, growing up all the time, like
12:03
Speaker 2: I would get it. They finally took my tonsils out
12:05
Speaker 2: when I was seven because they're like, we're sick of this,
12:07
Speaker 2: like seven times a year.
12:08
Speaker 3: This is crazy.
12:09
Speaker 2: So I was on antibiotics all of the time, and
12:12
Speaker 2: then I developed OCD when I was thirteen, and I
12:16
Speaker 2: distinctly remember this like fog kind of settling over my mind,
12:21
Speaker 2: like six very slow progression.
12:24
Speaker 3: It's weird to talk about, but.
12:27
Speaker 2: I remember sitting in my pediatrician's office and he's like,
12:29
Speaker 2: we actually need to rule out that this isn't pandas
12:32
Speaker 2: because of how much she's had strip and because at
12:36
Speaker 2: that time, their diagnostic criteria was that it had to
12:39
Speaker 2: have happened within two weeks from the infection. Now they've
12:43
Speaker 2: broadened that criteria to say, well, actually that's not one
12:46
Speaker 2: hundred percent true. So I have always wondered like, was
12:51
Speaker 2: I a panda's kid and I just never got diagnosed.
12:55
Speaker 2: It's possible. I think it's one of those things that
12:58
Speaker 2: will get better and better at recognizing, treating it, and
13:02
Speaker 2: addressing it appropriately the more we actually listen to families.
13:06
Speaker 3: I think that's probably the biggest thing.
13:08
Speaker 1: Yeah, the more we talk about it and the more
13:10
Speaker 1: people's minds are open to it. Exactly, talk to us
13:14
Speaker 1: some more about that treatment that you alluded to a
13:17
Speaker 1: minute ago. What does that look like?
13:19
Speaker 3: Yeah.
13:20
Speaker 2: Yeah, So there's the conventional kind of standard of care
13:24
Speaker 2: treatment is antibiotics and IVIG for some kids, which is
13:30
Speaker 2: iv immune globulins which kind of retrains the immune system.
13:34
Speaker 2: That was initially proposed by doctor Sweeto in the nineteen eighties,
13:39
Speaker 2: and so that has been like a foundational treatment for
13:42
Speaker 2: a lot of families. Now we know that antibiotics are
13:47
Speaker 2: not entirely harmless, and so you do have to kind
13:49
Speaker 2: of weigh those risks and benefits with your provider. I
13:54
Speaker 2: know a lot of families that have gone the route
13:56
Speaker 2: of IVIG and retraining the immune system, which is low
14:01
Speaker 2: dose Snell Trek zone or immunotherapy, which we know to
14:04
Speaker 2: be highly effective for a lot of these kids. We
14:08
Speaker 2: opted for something completely unconventional, which it's hard to say,
14:14
Speaker 2: you know, like you live it, and you're you're weighing
14:17
Speaker 2: this huge Like I feel like the weight of the
14:20
Speaker 2: world is in my lap right now because I don't
14:23
Speaker 2: know how like what the right thing to do is here.
14:26
Speaker 2: I'm seeing families go this direction and not get better.
14:28
Speaker 2: I'm seeing families go this direction and not get better.
14:31
Speaker 2: I'm seeing some go in that direction and they do
14:32
Speaker 2: get better. Like ultimately what's the right thing for my child,
14:36
Speaker 2: you know, And so whenever I'm talking to a family,
14:40
Speaker 2: I want to make sure I spend some time sitting
14:42
Speaker 2: in that space with them, because it is such a
14:45
Speaker 2: heavy decision to like, and for me, I felt such
14:49
Speaker 2: a weight of I know, this isn't the question that
14:52
Speaker 2: you asked, but it kind of matters, because I felt
14:55
Speaker 2: such this sense of urgency on time, Like time is
14:58
Speaker 2: not on my side. Inflammation in the brain for long
15:01
Speaker 2: periods of time is not good, right, Like we need
15:04
Speaker 2: to get on this. And so because she'd already gotten
15:08
Speaker 2: antibiotics for the strip, we knew that that was not
15:10
Speaker 2: something she needed. But I had personally administered ivig and
15:16
Speaker 2: witnessed some of the side effects of that, and I
15:18
Speaker 2: didn't have peace about pursuing that personally. I was like,
15:21
Speaker 2: I just don't have like a gut sense that that's
15:23
Speaker 2: the right thing for me to do. So for us,
15:27
Speaker 2: we again went completely unconventional and it ended up being
15:31
Speaker 2: the best thing that we could have ever done for her,
15:33
Speaker 2: which was to work with a homeopath that only worked
15:37
Speaker 2: with kids with pandas and they serve like twenty thousand
15:40
Speaker 2: families all.
15:41
Speaker 3: Over the world.
15:41
Speaker 2: So like they are the people, you know. And primarily
15:46
Speaker 2: because I was just watching families share, like we've started this,
15:49
Speaker 2: and this is what we're seeing. I had used homeopathy
15:52
Speaker 2: for myself and seen some really significant improvements, and so
15:56
Speaker 2: I was like, we're going to give this a shot,
15:58
Speaker 2: like and just see. And I remember giving her that
16:01
Speaker 2: first dose and like seeing my kid come back and
16:04
Speaker 2: I was like, oh, there she is, Like I haven't
16:07
Speaker 2: seen you in a year.
16:08
Speaker 3: And here you are.
16:09
Speaker 2: You know, So there are what I want to say
16:12
Speaker 2: within that there are so many different ways that we
16:15
Speaker 2: can support these kids, whether it's peptides or immunotherapy or
16:20
Speaker 2: low dose Snell Trek zone anti inflammatories IVIG.
16:25
Speaker 3: You know.
16:25
Speaker 2: I think again, the more that we're listening to families
16:28
Speaker 2: and really paying attention to how they're responding, we're going
16:32
Speaker 2: to get better at knowing what to recommend to them
16:35
Speaker 2: because every family truly is different. What works for us
16:38
Speaker 2: may not work for the family next door to us,
16:41
Speaker 2: you know, sure, based on genetics and other factors. So
16:44
Speaker 2: I hope that answered the question. But yeah, the standard
16:47
Speaker 2: conventional is you know, immunotherapy iv IG, which is immunotherapy, antibiotics,
16:53
Speaker 2: and usually some sort of anti inflammatory whether that's steroids
16:57
Speaker 2: or ibuprofen. So that's that's kind of the typical like
17:02
Speaker 2: kind of starting point for a lot of people, I
17:04
Speaker 2: would say.
17:05
Speaker 1: And is therapy part of that as well?
17:08
Speaker 2: It can be, Yeah, depending on I would say it it.
17:12
Speaker 2: I hate to use the word should because I'm not
17:15
Speaker 2: a fan of that word. I would say, many children
17:19
Speaker 2: really do benefit from that, and if the child's not
17:21
Speaker 2: benefiting from it, the family like needs it because it
17:25
Speaker 2: is incredibly stressful on the family system. I mean, our
17:30
Speaker 2: youngest daughter was three at the time that her sister
17:33
Speaker 2: was diagnosed, and so she didn't know like why she
17:35
Speaker 2: went from like she was playing with me yesterday and
17:37
Speaker 2: now she's telling me to shut up and get out
17:39
Speaker 2: of my face, and I don't like you, and like
17:44
Speaker 2: you can't like there's not no impact from that, right,
17:48
Speaker 2: So for our daughter, we did have her do cognitive
17:52
Speaker 2: behavioral therapy, mainly just so that she had a place
17:56
Speaker 2: where she could practice some skills outside of me, like
18:00
Speaker 2: teaching her right, Like I had to learn how to
18:02
Speaker 2: parent her differently, which I know we're going to talk about,
18:06
Speaker 2: Like this flipped every ideology that I have, like how
18:09
Speaker 2: I'm going to parent one oh, one is now in
18:12
Speaker 2: the trash because that does not work for these kids.
18:16
Speaker 2: So therapy, yes, if not for the child, then absolutely
18:19
Speaker 2: for the family members that need it, because everybody's going
18:23
Speaker 2: to need support. And we just kind of rotated whoever
18:25
Speaker 2: was struggling was in therapy that week, you know. So
18:29
Speaker 2: it wasn't a perfect like setup where everybody got to
18:32
Speaker 2: go every week because financially that wasn't doable, but we did.
18:36
Speaker 2: Therapy is helpful, neurofeedback can also be really helpful for
18:40
Speaker 2: these kids, and just helping to regulate their brains too awesome.
18:44
Speaker 1: So many things to think about. There's so many different
18:46
Speaker 1: aspects to it, it sounds like.
18:47
Speaker 2: Which is why it's so overwhelming. Yeah, And I would
18:51
Speaker 2: just say start where you can do one thing, you know,
18:55
Speaker 2: I know we kind of kind of talked about this
18:57
Speaker 2: last time, but like, start where you can do one
18:59
Speaker 2: thing that's doable for you, observe how your child does,
19:03
Speaker 2: and then build in more as you're able. But this
19:06
Speaker 2: is a marathon. This is a marathon recovery. It is
19:09
Speaker 2: not a sprint. And I am not sure that I
19:12
Speaker 2: fully understood that at the beginning, which I'm kind of
19:16
Speaker 2: glad I didn't because I think that would have been
19:18
Speaker 2: terrifying to be like, actually it's going to take her
19:20
Speaker 2: a while.
19:21
Speaker 3: That's hard to hear.
19:22
Speaker 1: So what does that timeframe look like. I know it's
19:25
Speaker 1: different for everyone, but is there like an average block.
19:29
Speaker 2: I've heard mixed things, and I really do think it
19:33
Speaker 2: depends on how long it takes for them to get
19:35
Speaker 2: the diagnosis. Some of these kids, it's just atrocious, like
19:39
Speaker 2: ten years before they're diagnosed, and I'm like, that's insane,
19:42
Speaker 2: Like at this point, it should not take that long. Uh,
19:46
Speaker 2: we know way too much at this point for it
19:48
Speaker 2: to take ten years, you know. But I think it's
19:50
Speaker 2: getting a little faster than that. But I have heard
19:52
Speaker 2: some families say like, yeah, we didn't get a diagnosis
19:54
Speaker 2: for ten years. How long it took for them to
19:57
Speaker 2: get the diagnosis, how long it took for them to
19:59
Speaker 2: get treetment on board, and how effective that treatment was.
20:03
Speaker 2: I think those are probably the three things, the three
20:06
Speaker 2: lynch pins that kind of determine how quickly for us.
20:10
Speaker 2: You know, we got the diagnosis immediately, we started, you know,
20:14
Speaker 2: a round of various treatments for her, antibiotics, anti inflammatories,
20:20
Speaker 2: not a huge response like she just didn't respond to
20:23
Speaker 2: them very well, and so that's when we had to
20:25
Speaker 2: pivot to homeopathy because what we were doing was not working.
20:30
Speaker 2: Then we started seeing progress, So it did feel like
20:33
Speaker 2: some of that was wasted time, which I think does
20:37
Speaker 2: contribute to the length of time of recovery. What I'm
20:41
Speaker 2: hearing from a lot of practitioners is anywhere between two
20:44
Speaker 2: and three years is kind of the standard recovery, again,
20:49
Speaker 2: depending on all of those factors, right, Yeah, so for
20:53
Speaker 2: us it's been a lot slower than that. But I
20:56
Speaker 2: don't know that that's the norm. I don't know that
20:58
Speaker 2: that's the standard, you know. I think that's just been
21:00
Speaker 2: our journey.
21:13
Speaker 1: And when you use the word recovery, are you saying
21:17
Speaker 1: Panda's and all of its behaviors and everything that came
21:20
Speaker 1: with it is totally gone? Or is it it's better
21:26
Speaker 1: and this is our new normal.
21:28
Speaker 2: Oh, that's a good question, I would say, Okay, so
21:31
Speaker 2: I probably should define that a little bit better. So
21:33
Speaker 2: when I say recovery, what I mean is that and
21:36
Speaker 2: I think this is the definition for I think this
21:40
Speaker 2: is maybe the clinical definition too, But I don't quote
21:43
Speaker 2: me on that. I could be totally wrong because I
21:45
Speaker 2: haven't looked at up recently.
21:46
Speaker 3: When I say.
21:47
Speaker 2: Recovery, I mean one when she gets exposed to a
21:52
Speaker 2: virus or a bacteria and no longer causes a neurological flare.
21:56
Speaker 2: Like she went from having a normal functioning brain that
22:01
Speaker 2: could have a fever to not ever getting sick, and
22:04
Speaker 2: it just attacking her brain every time she got sick.
22:06
Speaker 2: And so we actually had a party when she had
22:08
Speaker 2: her first fever like three years in because we're like, yes,
22:11
Speaker 2: her immune system is finally working. So now she gets
22:14
Speaker 2: actual illness, not neurological illness, which is a huge sign
22:19
Speaker 2: that the brain and the autonomic nervous system have recovered.
22:23
Speaker 2: Then that's like your I wish I had a visual
22:26
Speaker 2: of this, but that's like your brain stem brain, like
22:29
Speaker 2: your primal brain stem nervous system part of your brain.
22:34
Speaker 2: All of the learned behavior, right, the cognitive function, the
22:39
Speaker 2: emotional regulation, all of that comes after that part of
22:42
Speaker 2: your brain recovers. So we've seen just like this continual
22:47
Speaker 2: snowball of healing happen where she lost a lot of
22:51
Speaker 2: executive function, meaning she could unload the dishwasher before this happened.
22:55
Speaker 2: And I tried to like hander a spoon. One day,
22:58
Speaker 2: I was like, can you put this in the drawer,
22:59
Speaker 2: and she was like, I don't know what that is,
23:02
Speaker 2: like somebody had had a stroke. I mean it was
23:04
Speaker 2: literally that bad. And so so she has had to
23:08
Speaker 2: regain a lot of those skills, but they have come back.
23:11
Speaker 2: So for me, the definition of recovery is no longer
23:15
Speaker 2: having neurological impact from illness. That's a primary, like foundational definition,
23:22
Speaker 2: and continuing to recover everything that she lost, so emotional regulation,
23:27
Speaker 2: social skills, you know, the ability to remember to take
23:30
Speaker 2: a shower and take the shower, you know, the ability
23:33
Speaker 2: to remember to brush your teeth and actually follow through,
23:36
Speaker 2: like all of those types of things that our kids
23:41
Speaker 2: quote unquote.
23:42
Speaker 3: Should be able to do.
23:44
Speaker 2: Right. Yeah, that she lost and so for us, that's
23:47
Speaker 2: what that has looked like. I would say, we're not
23:49
Speaker 2: at a point where she's one hundred percent a Lexis
23:53
Speaker 2: before she had PANDAS, but every day we're seeing more
23:56
Speaker 2: and more of her.
23:58
Speaker 3: Does that make.
23:58
Speaker 1: Sense, Yeah, totally. Almost sounds like what you would expect from,
24:03
Speaker 1: like you said, a stroke or brain injury. There's some relearning,
24:07
Speaker 1: there's a lot of recovery after getting the medical part
24:13
Speaker 1: straightened out exactly? Is that right? Okay?
24:16
Speaker 2: Oh?
24:16
Speaker 3: Absolutely?
24:17
Speaker 2: And I would I would describe it like a chemical
24:20
Speaker 2: concussion and not from like a chemical substance, but like
24:25
Speaker 2: it's not a physical concussion. She didn't hit her head,
24:29
Speaker 2: but there's this inflammatory concussive type situation that we have, right,
24:34
Speaker 2: and so the recovery is exactly like you described where
24:38
Speaker 2: it's like, that's that's the best way I can communicate
24:41
Speaker 2: it to people. Like, imagine seeing somebody that's had a
24:44
Speaker 2: stroke and loses everything and they have to regain all
24:46
Speaker 2: of That's that's what this is. Like.
24:49
Speaker 1: Wow, Yeah, let's talk about the parenting then, because you
24:52
Speaker 1: said to me right from the start, you have to
24:55
Speaker 1: parent differently. Yeah, what does that look like? Like? So
25:00
Speaker 1: how do you start down that path of doing it differently?
25:03
Speaker 1: Like we talk a lot on this podcast in the
25:06
Speaker 1: nerdivergent parenting space about having to do things totally differently,
25:10
Speaker 1: So it's not a foreign concept here, but I imagine it
25:15
Speaker 1: probably looks different than what we typically talk about.
25:18
Speaker 2: Yeah, it's I'm like, where do I even start on
25:22
Speaker 2: this one? Because it was so instant for us, you
25:27
Speaker 2: know that it was like I had to really recognize
25:30
Speaker 2: really quickly that she was not responding to the style
25:33
Speaker 2: of parenting I had done before, where I could say, hey,
25:36
Speaker 2: it's time to put your shoes on, let's go to
25:38
Speaker 2: the store. Now it's a meltdown for an hour because
25:42
Speaker 2: her feet feel weird in shoes that had never been
25:45
Speaker 2: a problem before, like, or because you're telling her she
25:49
Speaker 2: has to change her plan, which her plan was that
25:52
Speaker 2: she was playing with her dolls five minutes earlier, and
25:54
Speaker 2: now I'm telling her.
25:55
Speaker 3: She has to go to the store.
25:57
Speaker 2: So at the very foundation, it was me having to
26:01
Speaker 2: own and recognize that her brain was different now, her
26:04
Speaker 2: nervous system was different now, and that meant that I
26:08
Speaker 2: had to learn what I didn't know yet, which felt
26:12
Speaker 2: very overwhelming because I didn't know what I didn't know yet.
26:15
Speaker 2: So it was this, I don't fully know what I'm
26:17
Speaker 2: dealing with. You know, on the outside, it looks like
26:19
Speaker 2: she's just kind of being a brat of like, I
26:21
Speaker 2: don't want to put my shoes on, and I don't
26:23
Speaker 2: want to do this, and I don't want to sit
26:25
Speaker 2: in the car, and you know, screaming at her sister
26:27
Speaker 2: because it was too loud in the in the car.
26:29
Speaker 2: So all of my parenting strategies, which would normally look like,
26:34
Speaker 2: you know, there's a consequence for behavior, which might look
26:38
Speaker 2: like a time out, or it might look like losing
26:42
Speaker 2: a privilege that you have later, something along those lines.
26:45
Speaker 2: None of that worked. So my goal in my parenting
26:49
Speaker 2: had to switch from I'm trying to get her to
26:51
Speaker 2: change her behavior to my only goal is that her
26:54
Speaker 2: brain heals and I stay calm. That's like, those are
26:58
Speaker 2: my only two goals. And then we have some boundaries
27:00
Speaker 2: within that, right, like you don't get to hit people,
27:03
Speaker 2: you don't get to scream at people, you don't get
27:05
Speaker 2: to throw things, you know, like not going to let
27:08
Speaker 2: you be a total man here. Safety in the home
27:11
Speaker 2: primary number one. And I really had to let that
27:15
Speaker 2: go and really kind of and this is the conversation
27:19
Speaker 2: I often have with people, is like, we really need
27:21
Speaker 2: to look at what our goal should be in this situation,
27:24
Speaker 2: because my goal cannot be that I have an obedient
27:27
Speaker 2: child right now she cannot access those skills, and so
27:32
Speaker 2: I had to do a lot of rewiring of my
27:34
Speaker 2: brain every interaction I had with her, because I'm like,
27:38
Speaker 2: she can't like she's doing the best she can, but
27:41
Speaker 2: she can't do that, and so how do I keep
27:44
Speaker 2: her safe?
27:45
Speaker 3: How do I keep her sister safe? How do I
27:48
Speaker 3: navigate her through this? And so.
27:51
Speaker 2: It took a lot of undoing, like death to self, yeah,
27:57
Speaker 2: because everything in me was like Wow, I didn't realize
28:00
Speaker 2: how much I needed a sense of control in this situation.
28:05
Speaker 2: I don't have that and I'm not going to find
28:08
Speaker 2: it in these interactions. So I've got to figure out
28:12
Speaker 2: how to do something differently. And there were definitely a
28:14
Speaker 2: lot of books that helped me with that. Gosh, understanding
28:18
Speaker 2: your child with intense emotions, I think was a big one.
28:22
Speaker 2: Doctor I'm blanket on the name. I'll have to drop
28:25
Speaker 2: it to you to put it in the show notes.
28:26
Speaker 2: But like the explosive child, I think helped just in
28:29
Speaker 2: like rephrasing things like instead of saying can you do that?
28:34
Speaker 2: I would say I need you to do that? And
28:36
Speaker 2: she would That was like the magic wand thing for her,
28:39
Speaker 2: like all of a sudden, she would just do it.
28:42
Speaker 2: So there were a lot of strategies. I had a
28:44
Speaker 2: lot of trial and error, but I would say the
28:46
Speaker 2: biggest was really just understanding the deficit, understanding what she
28:51
Speaker 2: was not able to do, and then redefining my goals
28:54
Speaker 2: as a parent for what parenting needed to look like now,
28:58
Speaker 2: because the goal couldn't be obid it just could not be.
29:01
Speaker 1: Yeah, it sounds exactly like what we do for neurodiviicient kids.
29:06
Speaker 1: Honestly it is. It's you know, the explosive child is
29:09
Speaker 1: one of our bibles of how we need to change
29:13
Speaker 1: our framework and reframe the behavior that we're seeing right,
29:18
Speaker 1: thinking about versus can't right and stuff like that, and
29:22
Speaker 1: so yeah, it's very very similar. We don't have that
29:25
Speaker 1: medical component, right, but the behavior component.
29:29
Speaker 3: It's the same.
29:29
Speaker 1: You have to shift for that in your parenting.
29:32
Speaker 2: Yeah, absolutely, or you destroy your relationship with your children.
29:36
Speaker 2: And I think that's what I was not willing to do.
29:40
Speaker 2: And I didn't care.
29:41
Speaker 1: You know.
29:41
Speaker 2: I got to a point where I was like, I
29:42
Speaker 2: don't care if the in laws don't agree with me
29:45
Speaker 2: like on this. You know, I don't care if my
29:48
Speaker 2: friends don't agree with me on this. Like I have
29:51
Speaker 2: to follow my gut, and my gut is telling me
29:54
Speaker 2: that this will get better, but I have to do
29:56
Speaker 2: this different. And it was hard. I mean lots of
30:00
Speaker 2: sweat and tears, lots of them. Yeah, I was having
30:04
Speaker 2: a lot of internal meltones so and external ones. Let's
30:08
Speaker 2: be honest, But yeah, I would say it's very similar.
30:12
Speaker 1: Very similar. What else do we need to know about
30:14
Speaker 1: pandas before we wrap up?
30:17
Speaker 2: I think just reiterating I think I said this, but
30:20
Speaker 2: if I didn't, I'll just repeat it. I think just
30:23
Speaker 2: reiterating that if you have a gut feeling that this
30:27
Speaker 2: is not quote unquote just I'm you know, I'm putting
30:31
Speaker 2: up quotation marks because it's never just neurodivergence, right, I'm
30:35
Speaker 2: not minimizing that, but I'm saying, if you have this
30:37
Speaker 2: just kind of hunch, like something just doesn't quite feel right,
30:41
Speaker 2: and I feel like this is worth investigating.
30:43
Speaker 3: Worst case scenario is.
30:45
Speaker 2: You're wrong, right, right, But if you're right, then this
30:50
Speaker 2: has to be treated medically, not just emotionally and psychologically.
30:55
Speaker 2: And so I think that would be my biggest encouragement
30:59
Speaker 2: to family is to listen to your gut. I am
31:01
Speaker 2: so thankful that we had a physician that immediately listened
31:06
Speaker 2: to me and I said, I don't want.
31:08
Speaker 3: To be right about this. I hate that this is
31:10
Speaker 3: a thought.
31:10
Speaker 2: In my mind, but I'm suspicious, like I think we
31:14
Speaker 2: might be dealing with this and please tell me if
31:17
Speaker 2: I'm wrong.
31:18
Speaker 1: Yeah, I'm happy to be wrong.
31:19
Speaker 2: I would love to be wrong. I would rather be
31:22
Speaker 2: wrong in this case. And he's like, we're going to
31:24
Speaker 2: do all the blood work, and I think you're right,
31:27
Speaker 2: but we need to do the blood work just to
31:29
Speaker 2: kind of confirm that.
31:30
Speaker 3: And so we did. We got very lucky with that.
31:33
Speaker 2: But I would say, don't be afraid to keep pushing
31:37
Speaker 2: for the help that your child needs. That this does
31:41
Speaker 2: get better and they do heal, but how they heal
31:44
Speaker 2: is going to be obviously very different for every family.
31:47
Speaker 2: Those contributing factors. Like we talked about, you are going
31:50
Speaker 2: to have to change your parenting. So get support on
31:53
Speaker 2: board as quickly as you can for the parenting aspect,
31:57
Speaker 2: because this is a marathon.
31:59
Speaker 3: That's the thing. I didn't know.
32:00
Speaker 2: I was like, oh, and you know, six months from
32:02
Speaker 2: now we'll all be I don't know that denial kept
32:04
Speaker 2: me safe to some degree, I think. But get that
32:07
Speaker 2: parenting support on board as quickly as you can, parent coaching,
32:11
Speaker 2: parent therapy, whatever it is, because this will it will
32:15
Speaker 2: flip things upside down. And I like to think it
32:18
Speaker 2: made me a better mom. I think it did, do
32:21
Speaker 2: I wish it had been a different way. Yes, yeah,
32:25
Speaker 2: in the character development aspect, I wish I could have
32:28
Speaker 2: formed those skills not going through that help, but sure
32:31
Speaker 2: here we are.
32:32
Speaker 1: So yeah. One more quick question for YO. Do you
32:36
Speaker 1: feel like mainstream pediatricians have this on their radar now
32:41
Speaker 1: or is this a case where a parent needs to
32:43
Speaker 1: go in and say, this is why I think it's this.
32:47
Speaker 1: Can we explore it?
32:49
Speaker 3: It's a really good question.
32:51
Speaker 2: I am split right down the middle on that one,
32:53
Speaker 2: because I do think they're getting better at recognizing it.
32:57
Speaker 2: But even like the first doctor we went to, which
33:01
Speaker 2: was like our naturopath at the time, didn't really take
33:04
Speaker 2: me seriously on it, and you would think a nature
33:06
Speaker 2: path would be more inclined to just because of their training.
33:09
Speaker 2: But I would say it's fifty to fifty, so I
33:12
Speaker 2: would say go in prepared with what you need to
33:15
Speaker 2: be prepared with to say I'm concerned about this and
33:18
Speaker 2: I want to rule it out. And that's more than
33:20
Speaker 2: fair to ask for Like it, it's your insurance that's
33:23
Speaker 2: covering it, it's you that's paying for it, So it's
33:26
Speaker 2: okay to make that demand. You know, if they don't
33:29
Speaker 2: listen to you and you still have that gut feeling
33:31
Speaker 2: find somebody who will it's worth ruling out in my opinion,
33:35
Speaker 2: So I do think that they're getting better, but I
33:38
Speaker 2: also know, like I remember reaching out to one of
33:41
Speaker 2: our one of my favorite actually immunologists at the hospital,
33:45
Speaker 2: pediatric immunologists, just because I was curious what her thoughts
33:49
Speaker 2: were on all of this, and they're still very skeptical
33:53
Speaker 2: of it, Like and they're in immunology. They're like, oh,
33:56
Speaker 2: that's a neurological problem. Well, I went and talked to
33:59
Speaker 2: my neurologist pediatrician friend and I was like, I was like, hey,
34:03
Speaker 2: what do you think about this? He goes, oh, that's
34:04
Speaker 2: immunology's problem. And I'm like, well, they say it's your problem,
34:07
Speaker 2: so whose problem is it?
34:08
Speaker 3: Like it affects.
34:10
Speaker 4: Both someday we have to like talk to each other.
34:13
Speaker 1: Except that all of these things work together exactly. You're
34:17
Speaker 1: all connected exactly.
34:18
Speaker 2: So I was like, okay, so this is where things
34:20
Speaker 2: are still at.
34:21
Speaker 3: Now.
34:22
Speaker 2: I do think it's getting better, you know, especially you know,
34:25
Speaker 2: we're seeing a lot more of it talked about on
34:27
Speaker 2: social media, more in the functional medicine space, I would say,
34:30
Speaker 2: than conventional. But I like to carry hope that conventional
34:34
Speaker 2: medicine's not too far behind. So I think it's hit
34:37
Speaker 2: or miss. But my advice with that would just be
34:40
Speaker 2: to come and prepared, be willing to ask for what
34:43
Speaker 2: you need, and worst case scenario, they say no, and
34:46
Speaker 2: you find somebody else that's willing to rule that out
34:48
Speaker 2: for you. That's kind of what I did. I was like,
34:51
Speaker 2: I really want to be wrong about this, and that's
34:53
Speaker 2: what I said, but I feel like we need to
34:55
Speaker 2: investigate that this might actually be happening, and that s
35:00
Speaker 2: to be pretty well received, so good.
35:02
Speaker 1: Yeah, good, Yeah, things are changing for sure. Yeah that's
35:07
Speaker 1: as fast as we'd like, but no, but it is.
35:11
Speaker 3: I do think it is in general.
35:12
Speaker 1: I do. Well, thank you, Andrea, well, thanks for having me.
35:16
Speaker 1: I am going to add some links that you provide
35:19
Speaker 1: for more information for people about pandas and pans and
35:24
Speaker 1: I will put those in the show notes on my website.
35:26
Speaker 3: Awesome.
35:27
Speaker 1: There will also be all sorts of links to Andrea's
35:31
Speaker 1: website and social media and her work, so if you
35:34
Speaker 1: want to connect and learn more or potentially work with her,
35:38
Speaker 1: you can do that as well. So all of those
35:41
Speaker 1: resources will be there for everybody and I hope you'll
35:43
Speaker 1: check them out. Thank you, pank you so much. It
35:46
Speaker 1: is really informative.
35:47
Speaker 3: I'm glad to hear that.
35:48
Speaker 1: I'm happy to have learned a little bit more so. Yeah,
35:52
Speaker 1: it's something we definitely need to be talking about. I agree,
35:54
Speaker 1: appreciate you well. Thanks everybody for joining us. I'll see
35:58
Speaker 1: you next time. Take good care. Visit beautifully hyphencomplex dot
36:03
Speaker 1: com for more resources, coaching and parent training. And help
36:08
Speaker 1: another kid by sharing this with someone who could benefit
36:11
Speaker 1: from listening.