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

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Your child's brain can change overnight, and it has nothing
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to do with how you're parenting. This is a topic
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that flies under the radar for so many families when
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a strep infection sets off a sudden, dramatic shift in
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a child's brain and behavior. We're talking rage, anxiety, sudden
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loss of skills, and why the usual parenting playbook doesn't
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work when a kid's brain is in crisis. If you've
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ever had a gut feeling that something more was going
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on with your kid, this episode is for you. I'm
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talking with nurse and functional medicine practitioner Andrea Jones, whose
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own daughter was diagnosed with pandas in twenty eighteen. We're
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talking about what it actually is, what recovery looks like,
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and how to parent through it. I'm Penny Williams, and
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this is beautifully complex. Welcome back to beautifully Complex everyone.
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I have Andrea Jones back with me on the podcast
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to talk about pandas this time and what it is.
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And even more importantly, I think, is what science can
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we look for in our children and if they have pandas,
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what can we do? So, Andrea, will you start by
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letting everyone know who you are and what you do
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for anybody who didn't listen the last time, who doesn't
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know you.
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Yeah, absolutely so. I my name is Andrea Jones. I
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am a registered nurse Bachelors of Science in nursing. Not
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that that matters for everybody listening, but I went to
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school for a fair amount of time to get my
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nursing degree and spent the first fifteen years of my
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career working bedside in pediatrics before leaving the hospital setting
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and launching a functional medicine practice. So now I work
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primarily with women and children, with women on a lot
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of complex health issues, hormone balancing stuff, and then with
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families where children also that have complex medical diagnoses and
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really just getting to the root of those issues. So
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I left the hospital setting for a lot of reasons.
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But one of those reasons I actually the timing is
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really weird when I look back, because I actually resigned
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and then my daughter got sick two months later, and
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so I really like, see, just there was kind of
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a grace on me not having to work thirteen hour shifts,
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but I didn't know that that was coming. And so we'll,
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you know, we'll talk a little bit more about that.
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But that's what I do. And I've got two girls,
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one of which who is recovering from PANDAS and was
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diagnosed with PANDAS in twenty eighteen.
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It's been several years then, yeah, yeah, yeah, half for
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life at this point. Yep. Wow, So talk to us
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a little bit about what PANDAS is.
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First, absolutely, yeah.
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So you know, PANDAS has been since the early nineteen eighties,
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and it stands for pediatric autoimmune neuropsychiatric disorder associated with STREP. Now,
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there's kind of two umbrella terms that are people are
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hearing more commonly now, which is PANS PANDAS, and PANS
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is pediatric autoimmune neuropsychiatric syndrome, which can be from mold, lime,
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or any other type of infection. But essentially it's the
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same diagnostic criteria, which is there is a preceding infection.
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For my daughter, it was STREP. For many kids, it's
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strap and through molecular mimicry, which is basically, the antibodies
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to STREP look very similar to specific cells in your brain,
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and the body begins to attack those in the basal ganglia,
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and so that for many kids looks like obsessive compulsive
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disorder anxiety meltdown's rage. There's quite a few symptoms that
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would fall in this case category, but the diagnostic criteria
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is that you know that acute phrase in there, which
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is that it typically happens very very quickly after that
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strep infection. Now, I think that personally that needs to change. Professionally,
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what I've seen is that that's it's not always acute.
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Sometimes it's oh, we look back and he was getting
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sick a lot, you know, and then his behavior started
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to change, and then they get the diagnosis of pandas.
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For my daughter, it was overnight, like, within two days
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of her getting a strep infection, getting antibiotics, she was
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not the same. And so it was a very immediate,
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observable difference in her that scared the ever living daylights
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out of me. And part of that was because I
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knew what PANDAS was. I had been trained to, you know,
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observe for it in pediatrics, but in our hospital setting,
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we weren't really and it could because it's mainly diagnosed
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out patient. That's probably why I didn't see it very much.
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But I didn't see it a lot in my patient care.
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I think I maybe had one patient that actually was
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diagnosed with that out of thousands and thousands of kids,
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and so but I knew, I knew that it existed,
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and I knew that I needed to take this very seriously,
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that something pretty significant had just happened in her brain
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and you know, just everything that comes with that, which
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is the how long is it going to take to heal?
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And crap? Now we're up a creek and what do
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we do? So that's yeah, that's I hope I answered
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the question. But that that is the diagnostic criteria for
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pandas and what it looked.
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Like for us.
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Is there a medical test?
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There are?
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There is not a because it's it's technically a clinical diagnosis,
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meaning that we're looking at presentation of symptoms. But there
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are several tests that we can do to confirm or
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validate the diagnosis. One of those is a antibody test.
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And so especially you know, if I have a kid
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come to me and they're like, this was pretty abrupt,
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like you know, and kids can be silent carriers of
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strap which they may never have actually had a sore throat,
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which is weird, but it does happen.
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Yeah, I have one of those.
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Yeah, and it happens a lot actually a lot more
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than you would think, and so it's a very cheap
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and easy test to do, meaning most physicians can order
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it pretty easily and get it covered by insurance. But
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that's the first thing we'd want to rule out is
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if they have elevated strap antibodies, that should warrant further
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investigation on what we're dealing with. And then if we
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really want to dig in, like much much deeper, we
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might do something like a neural zoomer, which is where
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we're actually looking at the neurotransmitters themselves and if there
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are antibodies against the neurotransmitters, which is amazing that we
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can see that. It's amazing that we can get that information.
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Is that a blood test?
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It is a blood test, Yeah, for those that are
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familiar with it. It's similar to the Cunningham panel, which
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is more commonly used in conventional medicine, but the neural zoomer,
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I would say, is a little bit more specific, so
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not all physicians will order that to my understanding.
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And like you've talked about that, really abrupt changes in
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behavior might happen, and it sounds like anxiety things that
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feel OCD level all. Yes, is there anything else that
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might signal to a parent, hey, I should think about
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pandas or I should talk to a clinician about this possibility.
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Yeah, and I wish I had pulled up the list
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of symptoms because there's quite a few. For our daughter,
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it wasn't actually anxiety. It was rage, like she would
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just scream for hours. And she was eight at that point,
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so it's like we are out of that stage, Like
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we're not in this stage of tantrums and meltdowns, you know,
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and completely unreasonable, completely unreachable. And I remember like looking
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at her and feeling like she's in there, but I
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can't get to her, like I can't. There was like
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this glossy look in her eyes, and actually, looking back
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at pictures now I realize it wasn't just my perception,
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Like she actually did kind of have this glassy kind
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of look to her eyes, and that's very common. I
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didn't know that at the time, but that is common.
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It's very common for these kids to have this kind
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of like we call it an allergic shiner, but it's
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like purple under their eyes. Sometimes their eyes are really bloodshot.
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Emotional regressions where they can't sleep alone at night, basically
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attachment anxiety, so where they're not wanting you to leave.
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So like she went through this huge period where I
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couldn't leave her at school, all of a sudden, she
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would have tremendous amount of separation anxiety that she'd never really.
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I mean, she was my kid that when I dropped
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off at the nursery at eleven month, she's like my mom, you.
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Know, like super easy going.
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For a lot of kids, they experience bed wedding where
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they weren't before, or peeing a lot and where it
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looks like they have a bladder infection but they don't,
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and so there's a lot of I mean, the thing
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that I would say is that it really does impact
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almost every system in the body for these kids. But
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what we're looking for in the diagnostic criteria is that
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behavior shift, right where maybe all of a sudden they're
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complaining of intrusive thoughts or hyperactivity where they can't settle down.
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Or noise sensitivity. That was a big one, Like she
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didn't ever have noise sensitivity really before that, and now
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all of a sudden, noises are really bothering her. So
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I can list some resources for like the symptom profile
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for families if that would be helpful. But those are
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common things that we see with PANDAS.
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Yeah, we can link some stuff up in the show
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notes on the website so that everybody has more information
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if they want to, they want to go and check
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that out, yeah, and investigate more. I'm just wondering, as
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you're talking, is it something that could resolve on its
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own if you didn't catch it?
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Could it resolve on its own the strip or the
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PANDAS PANDAS From what I have read and seen, No, No,
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it does not.
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There's some like anecdotal evidence that it resolves in puberty,
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but that's not been my observation. My observation has been
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that it actually just morphs into something different, gotcha where
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you know, you have a little bit less hormonal chaos,
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you know, once you get through puberty, But it's the
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mental health issues are there. They just look a little
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bit different. And so I personally and professionally don't believe
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that because of what I've seen, not just with my
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own kid, but with all of the other families you
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know that I'm in contact with, it doesn't. It's one
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of those things that it really does have to be
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treated and it has to be treated medically, not just
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like a psychiatric illness where it's like, Okay, we might
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need meds, we might need therapy, the standard things that
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they might need. They're also going to need medical treatment
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because it is a medical illness.
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Right, I asked, because as you were talking, my kid,
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who is neurodivergent, is a strep carrier, never has had
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a symptom. Ever, my other kid had like constant strap
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for a long time. And what we realized was they
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were sharing a tube of toothpaste and he we didn't know,
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like we didn't know at a time that you could
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have strap and not have strap, right, and so he
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was just giving it right back to her over and over.
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But a lot of the things that you talked about
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at one point in time really fit for him, like
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really different stuff. But it has resolved over time. And
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so that's why I asked, And it's a great question. Yeah.
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I just wondered, like, huh, could it well?
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And I even looked back at my eyes. I had
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strap all the time, growing up all the time, like
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I would get it. They finally took my tonsils out
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when I was seven because they're like, we're sick of this,
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like seven times a year.
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This is crazy.
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So I was on antibiotics all of the time, and
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then I developed OCD when I was thirteen, and I
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distinctly remember this like fog kind of settling over my mind,
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like six very slow progression.
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It's weird to talk about, but.
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I remember sitting in my pediatrician's office and he's like,
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we actually need to rule out that this isn't pandas
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because of how much she's had strip and because at
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that time, their diagnostic criteria was that it had to
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have happened within two weeks from the infection. Now they've
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broadened that criteria to say, well, actually that's not one
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hundred percent true. So I have always wondered like, was
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I a panda's kid and I just never got diagnosed.
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It's possible. I think it's one of those things that
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will get better and better at recognizing, treating it, and
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addressing it appropriately the more we actually listen to families.
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I think that's probably the biggest thing.
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Yeah, the more we talk about it and the more
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people's minds are open to it. Exactly, talk to us
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some more about that treatment that you alluded to a
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minute ago. What does that look like?
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Yeah.
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Yeah, So there's the conventional kind of standard of care
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treatment is antibiotics and IVIG for some kids, which is
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iv immune globulins which kind of retrains the immune system.
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That was initially proposed by doctor Sweeto in the nineteen eighties,
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and so that has been like a foundational treatment for
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a lot of families. Now we know that antibiotics are
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not entirely harmless, and so you do have to kind
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of weigh those risks and benefits with your provider. I
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know a lot of families that have gone the route
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of IVIG and retraining the immune system, which is low
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dose Snell Trek zone or immunotherapy, which we know to
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be highly effective for a lot of these kids. We
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opted for something completely unconventional, which it's hard to say,
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you know, like you live it, and you're you're weighing
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this huge Like I feel like the weight of the
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world is in my lap right now because I don't
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know how like what the right thing to do is here.
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I'm seeing families go this direction and not get better.
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I'm seeing families go this direction and not get better.
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I'm seeing some go in that direction and they do
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get better. Like ultimately what's the right thing for my child,
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you know, And so whenever I'm talking to a family,
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I want to make sure I spend some time sitting
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in that space with them, because it is such a
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heavy decision to like, and for me, I felt such
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a weight of I know, this isn't the question that
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you asked, but it kind of matters, because I felt
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such this sense of urgency on time, Like time is
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not on my side. Inflammation in the brain for long
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periods of time is not good, right, Like we need
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to get on this. And so because she'd already gotten
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antibiotics for the strip, we knew that that was not
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something she needed. But I had personally administered ivig and
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witnessed some of the side effects of that, and I
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didn't have peace about pursuing that personally. I was like,
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I just don't have like a gut sense that that's
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the right thing for me to do. So for us,
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we again went completely unconventional and it ended up being
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the best thing that we could have ever done for her,
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which was to work with a homeopath that only worked
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with kids with pandas and they serve like twenty thousand
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families all.
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Over the world.
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So like they are the people, you know. And primarily
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because I was just watching families share, like we've started this,
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and this is what we're seeing. I had used homeopathy
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for myself and seen some really significant improvements, and so
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I was like, we're going to give this a shot,
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like and just see. And I remember giving her that
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first dose and like seeing my kid come back and
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I was like, oh, there she is, Like I haven't
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seen you in a year.
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And here you are.
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You know, So there are what I want to say
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within that there are so many different ways that we
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can support these kids, whether it's peptides or immunotherapy or
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low dose Snell Trek zone anti inflammatories IVIG.
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You know.
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I think again, the more that we're listening to families
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and really paying attention to how they're responding, we're going
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to get better at knowing what to recommend to them
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because every family truly is different. What works for us
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may not work for the family next door to us,
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you know, sure, based on genetics and other factors. So
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I hope that answered the question. But yeah, the standard
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conventional is you know, immunotherapy iv IG, which is immunotherapy, antibiotics,
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and usually some sort of anti inflammatory whether that's steroids
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or ibuprofen. So that's that's kind of the typical like
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kind of starting point for a lot of people, I
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would say.
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And is therapy part of that as well?
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It can be, Yeah, depending on I would say it it.
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I hate to use the word should because I'm not
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a fan of that word. I would say, many children
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really do benefit from that, and if the child's not
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benefiting from it, the family like needs it because it
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is incredibly stressful on the family system. I mean, our
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youngest daughter was three at the time that her sister
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was diagnosed, and so she didn't know like why she
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went from like she was playing with me yesterday and
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now she's telling me to shut up and get out
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of my face, and I don't like you, and like
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you can't like there's not no impact from that, right,
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So for our daughter, we did have her do cognitive
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behavioral therapy, mainly just so that she had a place
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where she could practice some skills outside of me, like
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teaching her right, Like I had to learn how to
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parent her differently, which I know we're going to talk about,
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Like this flipped every ideology that I have, like how
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I'm going to parent one oh, one is now in
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the trash because that does not work for these kids.
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So therapy, yes, if not for the child, then absolutely
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for the family members that need it, because everybody's going
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to need support. And we just kind of rotated whoever
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was struggling was in therapy that week, you know. So
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it wasn't a perfect like setup where everybody got to
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go every week because financially that wasn't doable, but we did.
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Therapy is helpful, neurofeedback can also be really helpful for
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these kids, and just helping to regulate their brains too awesome.
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So many things to think about. There's so many different
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aspects to it, it sounds like.
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Which is why it's so overwhelming. Yeah, And I would
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just say start where you can do one thing, you know,
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I know we kind of kind of talked about this
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last time, but like, start where you can do one
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thing that's doable for you, observe how your child does,
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and then build in more as you're able. But this
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is a marathon. This is a marathon recovery. It is
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not a sprint. And I am not sure that I
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fully understood that at the beginning, which I'm kind of
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glad I didn't because I think that would have been
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terrifying to be like, actually it's going to take her
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a while.
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That's hard to hear.
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So what does that timeframe look like. I know it's
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different for everyone, but is there like an average block.
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I've heard mixed things, and I really do think it
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depends on how long it takes for them to get
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the diagnosis. Some of these kids, it's just atrocious, like
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ten years before they're diagnosed, and I'm like, that's insane,
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Like at this point, it should not take that long. Uh,
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we know way too much at this point for it
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to take ten years, you know. But I think it's
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getting a little faster than that. But I have heard
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some families say like, yeah, we didn't get a diagnosis
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for ten years. How long it took for them to
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get the diagnosis, how long it took for them to
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get treetment on board, and how effective that treatment was.
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I think those are probably the three things, the three
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00:20:06.559 --> 00:20:10.680
lynch pins that kind of determine how quickly for us.
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00:20:10.759 --> 00:20:13.960
You know, we got the diagnosis immediately, we started, you know,
364
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a round of various treatments for her, antibiotics, anti inflammatories,
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00:20:20.720 --> 00:20:23.519
not a huge response like she just didn't respond to
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them very well, and so that's when we had to
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pivot to homeopathy because what we were doing was not working.
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Then we started seeing progress, So it did feel like
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some of that was wasted time, which I think does
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contribute to the length of time of recovery. What I'm
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hearing from a lot of practitioners is anywhere between two
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and three years is kind of the standard recovery, again,
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depending on all of those factors, right, Yeah, so for
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us it's been a lot slower than that. But I
375
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don't know that that's the norm. I don't know that
376
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that's the standard, you know. I think that's just been
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00:21:00.839 --> 00:21:13.559
our journey.
378
00:21:13.720 --> 00:21:17.279
And when you use the word recovery, are you saying
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00:21:17.799 --> 00:21:20.720
Panda's and all of its behaviors and everything that came
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00:21:20.759 --> 00:21:25.440
with it is totally gone? Or is it it's better
381
00:21:26.079 --> 00:21:27.440
and this is our new normal.
382
00:21:28.079 --> 00:21:30.839
Oh, that's a good question, I would say, Okay, so
383
00:21:31.000 --> 00:21:32.960
I probably should define that a little bit better. So
384
00:21:33.119 --> 00:21:36.720
when I say recovery, what I mean is that and
385
00:21:36.799 --> 00:21:40.400
I think this is the definition for I think this
386
00:21:40.480 --> 00:21:43.440
is maybe the clinical definition too, But I don't quote
387
00:21:43.480 --> 00:21:45.079
me on that. I could be totally wrong because I
388
00:21:45.079 --> 00:21:46.119
haven't looked at up recently.
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00:21:46.839 --> 00:21:47.559
When I say.
390
00:21:47.400 --> 00:21:52.160
Recovery, I mean one when she gets exposed to a
391
00:21:52.240 --> 00:21:55.720
virus or a bacteria and no longer causes a neurological flare.
392
00:21:56.319 --> 00:22:01.079
Like she went from having a normal functioning brain that
393
00:22:01.160 --> 00:22:04.319
could have a fever to not ever getting sick, and
394
00:22:04.359 --> 00:22:06.839
it just attacking her brain every time she got sick.
395
00:22:06.880 --> 00:22:08.920
And so we actually had a party when she had
396
00:22:08.960 --> 00:22:11.400
her first fever like three years in because we're like, yes,
397
00:22:11.440 --> 00:22:14.680
her immune system is finally working. So now she gets
398
00:22:14.880 --> 00:22:19.400
actual illness, not neurological illness, which is a huge sign
399
00:22:19.599 --> 00:22:22.559
that the brain and the autonomic nervous system have recovered.
400
00:22:23.359 --> 00:22:26.440
Then that's like your I wish I had a visual
401
00:22:26.480 --> 00:22:29.759
of this, but that's like your brain stem brain, like
402
00:22:29.839 --> 00:22:34.240
your primal brain stem nervous system part of your brain.
403
00:22:34.920 --> 00:22:38.920
All of the learned behavior, right, the cognitive function, the
404
00:22:39.000 --> 00:22:42.720
emotional regulation, all of that comes after that part of
405
00:22:42.759 --> 00:22:46.960
your brain recovers. So we've seen just like this continual
406
00:22:47.119 --> 00:22:51.480
snowball of healing happen where she lost a lot of
407
00:22:51.519 --> 00:22:55.599
executive function, meaning she could unload the dishwasher before this happened.
408
00:22:55.640 --> 00:22:58.319
And I tried to like hander a spoon. One day,
409
00:22:58.359 --> 00:22:59.799
I was like, can you put this in the drawer,
410
00:22:59.799 --> 00:23:01.279
and she was like, I don't know what that is,
411
00:23:02.200 --> 00:23:04.359
like somebody had had a stroke. I mean it was
412
00:23:04.440 --> 00:23:08.160
literally that bad. And so so she has had to
413
00:23:08.200 --> 00:23:11.240
regain a lot of those skills, but they have come back.
414
00:23:11.319 --> 00:23:15.200
So for me, the definition of recovery is no longer
415
00:23:15.279 --> 00:23:21.680
having neurological impact from illness. That's a primary, like foundational definition,
416
00:23:22.519 --> 00:23:26.799
and continuing to recover everything that she lost, so emotional regulation,
417
00:23:27.839 --> 00:23:30.799
social skills, you know, the ability to remember to take
418
00:23:30.799 --> 00:23:33.839
a shower and take the shower, you know, the ability
419
00:23:33.880 --> 00:23:36.160
to remember to brush your teeth and actually follow through,
420
00:23:36.279 --> 00:23:40.960
like all of those types of things that our kids
421
00:23:41.519 --> 00:23:42.839
quote unquote.
422
00:23:42.960 --> 00:23:44.119
Should be able to do.
423
00:23:44.279 --> 00:23:47.559
Right. Yeah, that she lost and so for us, that's
424
00:23:47.599 --> 00:23:49.880
what that has looked like. I would say, we're not
425
00:23:49.920 --> 00:23:53.000
at a point where she's one hundred percent a Lexis
426
00:23:53.200 --> 00:23:56.720
before she had PANDAS, but every day we're seeing more
427
00:23:56.759 --> 00:23:57.720
and more of her.
428
00:23:58.000 --> 00:23:58.759
Does that make.
429
00:23:58.599 --> 00:24:03.160
Sense, Yeah, totally. Almost sounds like what you would expect from,
430
00:24:03.200 --> 00:24:07.000
like you said, a stroke or brain injury. There's some relearning,
431
00:24:07.119 --> 00:24:13.680
there's a lot of recovery after getting the medical part
432
00:24:13.839 --> 00:24:15.839
straightened out exactly? Is that right? Okay?
433
00:24:16.079 --> 00:24:16.240
Oh?
434
00:24:16.279 --> 00:24:16.920
Absolutely?
435
00:24:17.000 --> 00:24:20.279
And I would I would describe it like a chemical
436
00:24:20.319 --> 00:24:25.200
concussion and not from like a chemical substance, but like
437
00:24:25.799 --> 00:24:28.519
it's not a physical concussion. She didn't hit her head,
438
00:24:29.039 --> 00:24:34.640
but there's this inflammatory concussive type situation that we have, right,
439
00:24:34.960 --> 00:24:38.359
and so the recovery is exactly like you described where
440
00:24:38.359 --> 00:24:41.319
it's like, that's that's the best way I can communicate
441
00:24:41.319 --> 00:24:44.480
it to people. Like, imagine seeing somebody that's had a
442
00:24:44.519 --> 00:24:46.799
stroke and loses everything and they have to regain all
443
00:24:46.839 --> 00:24:48.480
of That's that's what this is. Like.
444
00:24:49.519 --> 00:24:52.799
Wow, Yeah, let's talk about the parenting then, because you
445
00:24:52.839 --> 00:24:54.960
said to me right from the start, you have to
446
00:24:55.039 --> 00:25:00.079
parent differently. Yeah, what does that look like? Like? So
447
00:25:00.519 --> 00:25:03.640
how do you start down that path of doing it differently?
448
00:25:03.720 --> 00:25:06.319
Like we talk a lot on this podcast in the
449
00:25:06.359 --> 00:25:10.640
nerdivergent parenting space about having to do things totally differently,
450
00:25:10.720 --> 00:25:15.599
So it's not a foreign concept here, but I imagine it
451
00:25:15.640 --> 00:25:18.559
probably looks different than what we typically talk about.
452
00:25:18.799 --> 00:25:22.319
Yeah, it's I'm like, where do I even start on
453
00:25:22.319 --> 00:25:27.000
this one? Because it was so instant for us, you
454
00:25:27.039 --> 00:25:30.720
know that it was like I had to really recognize
455
00:25:30.799 --> 00:25:33.839
really quickly that she was not responding to the style
456
00:25:33.880 --> 00:25:36.240
of parenting I had done before, where I could say, hey,
457
00:25:36.240 --> 00:25:37.920
it's time to put your shoes on, let's go to
458
00:25:38.000 --> 00:25:42.119
the store. Now it's a meltdown for an hour because
459
00:25:42.680 --> 00:25:45.759
her feet feel weird in shoes that had never been
460
00:25:45.759 --> 00:25:48.880
a problem before, like, or because you're telling her she
461
00:25:49.039 --> 00:25:52.160
has to change her plan, which her plan was that
462
00:25:52.240 --> 00:25:54.359
she was playing with her dolls five minutes earlier, and
463
00:25:54.400 --> 00:25:55.640
now I'm telling her.
464
00:25:55.640 --> 00:25:56.720
She has to go to the store.
465
00:25:57.160 --> 00:26:01.000
So at the very foundation, it was me having to
466
00:26:01.079 --> 00:26:04.759
own and recognize that her brain was different now, her
467
00:26:04.799 --> 00:26:08.039
nervous system was different now, and that meant that I
468
00:26:08.119 --> 00:26:11.920
had to learn what I didn't know yet, which felt
469
00:26:12.039 --> 00:26:14.720
very overwhelming because I didn't know what I didn't know yet.
470
00:26:15.359 --> 00:26:17.359
So it was this, I don't fully know what I'm
471
00:26:17.400 --> 00:26:19.839
dealing with. You know, on the outside, it looks like
472
00:26:19.880 --> 00:26:21.880
she's just kind of being a brat of like, I
473
00:26:21.920 --> 00:26:23.359
don't want to put my shoes on, and I don't
474
00:26:23.440 --> 00:26:25.039
want to do this, and I don't want to sit
475
00:26:25.079 --> 00:26:27.519
in the car, and you know, screaming at her sister
476
00:26:27.599 --> 00:26:29.480
because it was too loud in the in the car.
477
00:26:29.680 --> 00:26:33.599
So all of my parenting strategies, which would normally look like,
478
00:26:34.480 --> 00:26:38.559
you know, there's a consequence for behavior, which might look
479
00:26:38.640 --> 00:26:41.279
like a time out, or it might look like losing
480
00:26:42.240 --> 00:26:44.920
a privilege that you have later, something along those lines.
481
00:26:45.599 --> 00:26:48.960
None of that worked. So my goal in my parenting
482
00:26:49.359 --> 00:26:51.480
had to switch from I'm trying to get her to
483
00:26:51.559 --> 00:26:54.400
change her behavior to my only goal is that her
484
00:26:54.440 --> 00:26:58.599
brain heals and I stay calm. That's like, those are
485
00:26:58.640 --> 00:27:00.839
my only two goals. And then we have some boundaries
486
00:27:00.839 --> 00:27:02.920
within that, right, like you don't get to hit people,
487
00:27:03.240 --> 00:27:05.200
you don't get to scream at people, you don't get
488
00:27:05.240 --> 00:27:08.079
to throw things, you know, like not going to let
489
00:27:08.119 --> 00:27:12.119
you be a total man here. Safety in the home
490
00:27:11.799 --> 00:27:15.279
primary number one. And I really had to let that
491
00:27:15.359 --> 00:27:19.440
go and really kind of and this is the conversation
492
00:27:19.519 --> 00:27:21.880
I often have with people, is like, we really need
493
00:27:21.920 --> 00:27:24.880
to look at what our goal should be in this situation,
494
00:27:24.960 --> 00:27:27.839
because my goal cannot be that I have an obedient
495
00:27:27.920 --> 00:27:31.680
child right now she cannot access those skills, and so
496
00:27:32.240 --> 00:27:34.240
I had to do a lot of rewiring of my
497
00:27:34.359 --> 00:27:37.920
brain every interaction I had with her, because I'm like,
498
00:27:38.119 --> 00:27:41.759
she can't like she's doing the best she can, but
499
00:27:41.839 --> 00:27:44.759
she can't do that, and so how do I keep
500
00:27:44.799 --> 00:27:45.680
her safe?
501
00:27:45.680 --> 00:27:48.359
How do I keep her sister safe? How do I
502
00:27:48.440 --> 00:27:49.960
navigate her through this? And so.
503
00:27:51.519 --> 00:27:57.160
It took a lot of undoing, like death to self, yeah,
504
00:27:57.200 --> 00:28:00.759
because everything in me was like Wow, I didn't realize
505
00:28:00.759 --> 00:28:05.079
how much I needed a sense of control in this situation.
506
00:28:05.319 --> 00:28:08.680
I don't have that and I'm not going to find
507
00:28:08.680 --> 00:28:12.119
it in these interactions. So I've got to figure out
508
00:28:12.440 --> 00:28:14.279
how to do something differently. And there were definitely a
509
00:28:14.279 --> 00:28:18.799
lot of books that helped me with that. Gosh, understanding
510
00:28:18.839 --> 00:28:21.440
your child with intense emotions, I think was a big one.
511
00:28:22.200 --> 00:28:25.000
Doctor I'm blanket on the name. I'll have to drop
512
00:28:25.039 --> 00:28:26.480
it to you to put it in the show notes.
513
00:28:26.519 --> 00:28:29.799
But like the explosive child, I think helped just in
514
00:28:29.839 --> 00:28:34.400
like rephrasing things like instead of saying can you do that?
515
00:28:34.440 --> 00:28:36.279
I would say I need you to do that? And
516
00:28:36.319 --> 00:28:39.440
she would That was like the magic wand thing for her,
517
00:28:39.480 --> 00:28:41.960
like all of a sudden, she would just do it.
518
00:28:42.599 --> 00:28:44.799
So there were a lot of strategies. I had a
519
00:28:44.839 --> 00:28:46.839
lot of trial and error, but I would say the
520
00:28:46.920 --> 00:28:51.079
biggest was really just understanding the deficit, understanding what she
521
00:28:51.319 --> 00:28:54.519
was not able to do, and then redefining my goals
522
00:28:54.559 --> 00:28:58.480
as a parent for what parenting needed to look like now,
523
00:28:58.559 --> 00:29:01.200
because the goal couldn't be obid it just could not be.
524
00:29:01.480 --> 00:29:06.079
Yeah, it sounds exactly like what we do for neurodiviicient kids.
525
00:29:06.119 --> 00:29:09.000
Honestly it is. It's you know, the explosive child is
526
00:29:09.039 --> 00:29:13.839
one of our bibles of how we need to change
527
00:29:13.880 --> 00:29:17.640
our framework and reframe the behavior that we're seeing right,
528
00:29:18.079 --> 00:29:22.240
thinking about versus can't right and stuff like that, and
529
00:29:22.319 --> 00:29:25.440
so yeah, it's very very similar. We don't have that
530
00:29:25.480 --> 00:29:29.640
medical component, right, but the behavior component.
531
00:29:29.359 --> 00:29:29.880
It's the same.
532
00:29:29.960 --> 00:29:32.680
You have to shift for that in your parenting.
533
00:29:32.440 --> 00:29:36.519
Yeah, absolutely, or you destroy your relationship with your children.
534
00:29:36.599 --> 00:29:39.240
And I think that's what I was not willing to do.
535
00:29:40.240 --> 00:29:41.039
And I didn't care.
536
00:29:41.519 --> 00:29:41.680
You know.
537
00:29:41.720 --> 00:29:42.920
I got to a point where I was like, I
538
00:29:42.920 --> 00:29:45.519
don't care if the in laws don't agree with me
539
00:29:45.920 --> 00:29:48.400
like on this. You know, I don't care if my
540
00:29:48.440 --> 00:29:51.400
friends don't agree with me on this. Like I have
541
00:29:51.480 --> 00:29:53.519
to follow my gut, and my gut is telling me
542
00:29:54.039 --> 00:29:56.480
that this will get better, but I have to do
543
00:29:56.519 --> 00:30:00.920
this different. And it was hard. I mean lots of
544
00:30:00.920 --> 00:30:04.480
sweat and tears, lots of them. Yeah, I was having
545
00:30:04.480 --> 00:30:08.599
a lot of internal meltones so and external ones. Let's
546
00:30:08.599 --> 00:30:11.920
be honest, But yeah, I would say it's very similar.
547
00:30:12.680 --> 00:30:14.799
Very similar. What else do we need to know about
548
00:30:14.799 --> 00:30:16.480
pandas before we wrap up?
549
00:30:17.880 --> 00:30:20.640
I think just reiterating I think I said this, but
550
00:30:20.759 --> 00:30:23.039
if I didn't, I'll just repeat it. I think just
551
00:30:23.079 --> 00:30:27.480
reiterating that if you have a gut feeling that this
552
00:30:27.559 --> 00:30:31.480
is not quote unquote just I'm you know, I'm putting
553
00:30:31.519 --> 00:30:35.279
up quotation marks because it's never just neurodivergence, right, I'm
554
00:30:35.279 --> 00:30:37.160
not minimizing that, but I'm saying, if you have this
555
00:30:37.319 --> 00:30:40.960
just kind of hunch, like something just doesn't quite feel right,
556
00:30:41.000 --> 00:30:43.200
and I feel like this is worth investigating.
557
00:30:43.920 --> 00:30:45.279
Worst case scenario is.
558
00:30:45.240 --> 00:30:50.440
You're wrong, right, right, But if you're right, then this
559
00:30:50.519 --> 00:30:54.960
has to be treated medically, not just emotionally and psychologically.
560
00:30:55.440 --> 00:30:59.480
And so I think that would be my biggest encouragement
561
00:30:59.519 --> 00:31:01.720
to family is to listen to your gut. I am
562
00:31:01.759 --> 00:31:06.000
so thankful that we had a physician that immediately listened
563
00:31:06.039 --> 00:31:08.559
to me and I said, I don't want.
564
00:31:08.440 --> 00:31:10.240
To be right about this. I hate that this is
565
00:31:10.279 --> 00:31:10.799
a thought.
566
00:31:10.640 --> 00:31:14.079
In my mind, but I'm suspicious, like I think we
567
00:31:14.200 --> 00:31:17.039
might be dealing with this and please tell me if
568
00:31:17.079 --> 00:31:17.519
I'm wrong.
569
00:31:18.039 --> 00:31:19.720
Yeah, I'm happy to be wrong.
570
00:31:19.880 --> 00:31:22.079
I would love to be wrong. I would rather be
571
00:31:22.119 --> 00:31:24.440
wrong in this case. And he's like, we're going to
572
00:31:24.519 --> 00:31:26.759
do all the blood work, and I think you're right,
573
00:31:27.319 --> 00:31:28.920
but we need to do the blood work just to
574
00:31:29.160 --> 00:31:30.000
kind of confirm that.
575
00:31:30.200 --> 00:31:32.920
And so we did. We got very lucky with that.
576
00:31:33.039 --> 00:31:37.039
But I would say, don't be afraid to keep pushing
577
00:31:37.319 --> 00:31:41.000
for the help that your child needs. That this does
578
00:31:41.079 --> 00:31:44.559
get better and they do heal, but how they heal
579
00:31:44.640 --> 00:31:46.920
is going to be obviously very different for every family.
580
00:31:47.400 --> 00:31:50.839
Those contributing factors. Like we talked about, you are going
581
00:31:50.880 --> 00:31:53.880
to have to change your parenting. So get support on
582
00:31:53.960 --> 00:31:57.119
board as quickly as you can for the parenting aspect,
583
00:31:57.160 --> 00:31:58.559
because this is a marathon.
584
00:31:59.079 --> 00:31:59.960
That's the thing. I didn't know.
585
00:32:00.200 --> 00:32:02.359
I was like, oh, and you know, six months from
586
00:32:02.400 --> 00:32:04.640
now we'll all be I don't know that denial kept
587
00:32:04.640 --> 00:32:07.640
me safe to some degree, I think. But get that
588
00:32:07.799 --> 00:32:11.519
parenting support on board as quickly as you can, parent coaching,
589
00:32:11.759 --> 00:32:15.319
parent therapy, whatever it is, because this will it will
590
00:32:15.359 --> 00:32:18.559
flip things upside down. And I like to think it
591
00:32:18.599 --> 00:32:21.640
made me a better mom. I think it did, do
592
00:32:21.680 --> 00:32:25.640
I wish it had been a different way. Yes, yeah,
593
00:32:25.680 --> 00:32:28.480
in the character development aspect, I wish I could have
594
00:32:28.559 --> 00:32:31.640
formed those skills not going through that help, but sure
595
00:32:31.720 --> 00:32:32.240
here we are.
596
00:32:32.519 --> 00:32:36.079
So yeah. One more quick question for YO. Do you
597
00:32:36.359 --> 00:32:41.160
feel like mainstream pediatricians have this on their radar now
598
00:32:41.599 --> 00:32:43.680
or is this a case where a parent needs to
599
00:32:43.720 --> 00:32:47.119
go in and say, this is why I think it's this.
600
00:32:47.319 --> 00:32:49.599
Can we explore it?
601
00:32:49.599 --> 00:32:50.759
It's a really good question.
602
00:32:51.119 --> 00:32:53.759
I am split right down the middle on that one,
603
00:32:53.839 --> 00:32:56.960
because I do think they're getting better at recognizing it.
604
00:32:57.039 --> 00:33:01.039
But even like the first doctor we went to, which
605
00:33:01.079 --> 00:33:04.039
was like our naturopath at the time, didn't really take
606
00:33:04.079 --> 00:33:06.039
me seriously on it, and you would think a nature
607
00:33:06.079 --> 00:33:09.079
path would be more inclined to just because of their training.
608
00:33:09.119 --> 00:33:12.279
But I would say it's fifty to fifty, so I
609
00:33:12.279 --> 00:33:15.640
would say go in prepared with what you need to
610
00:33:15.640 --> 00:33:18.039
be prepared with to say I'm concerned about this and
611
00:33:18.079 --> 00:33:20.440
I want to rule it out. And that's more than
612
00:33:20.559 --> 00:33:23.960
fair to ask for Like it, it's your insurance that's
613
00:33:23.960 --> 00:33:26.920
covering it, it's you that's paying for it, So it's
614
00:33:26.960 --> 00:33:29.559
okay to make that demand. You know, if they don't
615
00:33:29.599 --> 00:33:31.640
listen to you and you still have that gut feeling
616
00:33:31.880 --> 00:33:35.200
find somebody who will it's worth ruling out in my opinion,
617
00:33:35.880 --> 00:33:38.160
So I do think that they're getting better, but I
618
00:33:38.200 --> 00:33:41.880
also know, like I remember reaching out to one of
619
00:33:41.880 --> 00:33:44.920
our one of my favorite actually immunologists at the hospital,
620
00:33:45.000 --> 00:33:49.640
pediatric immunologists, just because I was curious what her thoughts
621
00:33:49.640 --> 00:33:53.440
were on all of this, and they're still very skeptical
622
00:33:53.559 --> 00:33:56.400
of it, Like and they're in immunology. They're like, oh,
623
00:33:56.440 --> 00:33:59.599
that's a neurological problem. Well, I went and talked to
624
00:33:59.599 --> 00:34:03.440
my neurologist pediatrician friend and I was like, I was like, hey,
625
00:34:03.480 --> 00:34:04.799
what do you think about this? He goes, oh, that's
626
00:34:04.799 --> 00:34:07.400
immunology's problem. And I'm like, well, they say it's your problem,
627
00:34:07.440 --> 00:34:08.440
so whose problem is it?
628
00:34:08.480 --> 00:34:10.360
Like it affects.
629
00:34:10.000 --> 00:34:13.679
Both someday we have to like talk to each other.
630
00:34:13.840 --> 00:34:17.199
Except that all of these things work together exactly. You're
631
00:34:17.239 --> 00:34:18.599
all connected exactly.
632
00:34:18.639 --> 00:34:20.679
So I was like, okay, so this is where things
633
00:34:20.679 --> 00:34:21.280
are still at.
634
00:34:21.360 --> 00:34:21.599
Now.
635
00:34:22.039 --> 00:34:25.280
I do think it's getting better, you know, especially you know,
636
00:34:25.280 --> 00:34:27.039
we're seeing a lot more of it talked about on
637
00:34:27.079 --> 00:34:30.719
social media, more in the functional medicine space, I would say,
638
00:34:30.719 --> 00:34:34.840
than conventional. But I like to carry hope that conventional
639
00:34:34.920 --> 00:34:37.840
medicine's not too far behind. So I think it's hit
640
00:34:37.960 --> 00:34:39.960
or miss. But my advice with that would just be
641
00:34:40.039 --> 00:34:43.159
to come and prepared, be willing to ask for what
642
00:34:43.199 --> 00:34:46.840
you need, and worst case scenario, they say no, and
643
00:34:46.880 --> 00:34:48.840
you find somebody else that's willing to rule that out
644
00:34:48.840 --> 00:34:51.280
for you. That's kind of what I did. I was like,
645
00:34:51.800 --> 00:34:53.440
I really want to be wrong about this, and that's
646
00:34:53.480 --> 00:34:55.840
what I said, but I feel like we need to
647
00:34:55.880 --> 00:34:59.719
investigate that this might actually be happening, and that s
648
00:35:00.119 --> 00:35:02.519
to be pretty well received, so good.
649
00:35:02.840 --> 00:35:07.679
Yeah, good, Yeah, things are changing for sure. Yeah that's
650
00:35:07.679 --> 00:35:10.400
as fast as we'd like, but no, but it is.
651
00:35:11.079 --> 00:35:12.760
I do think it is in general.
652
00:35:12.800 --> 00:35:16.280
I do. Well, thank you, Andrea, well, thanks for having me.
653
00:35:16.400 --> 00:35:19.639
I am going to add some links that you provide
654
00:35:19.920 --> 00:35:23.960
for more information for people about pandas and pans and
655
00:35:24.000 --> 00:35:26.880
I will put those in the show notes on my website.
656
00:35:26.960 --> 00:35:27.320
Awesome.
657
00:35:27.440 --> 00:35:31.079
There will also be all sorts of links to Andrea's
658
00:35:31.079 --> 00:35:34.920
website and social media and her work, so if you
659
00:35:34.960 --> 00:35:38.400
want to connect and learn more or potentially work with her,
660
00:35:38.440 --> 00:35:41.000
you can do that as well. So all of those
661
00:35:41.039 --> 00:35:43.559
resources will be there for everybody and I hope you'll
662
00:35:43.599 --> 00:35:46.119
check them out. Thank you, pank you so much. It
663
00:35:46.199 --> 00:35:47.639
is really informative.
664
00:35:47.800 --> 00:35:48.920
I'm glad to hear that.
665
00:35:48.960 --> 00:35:51.960
I'm happy to have learned a little bit more so. Yeah,
666
00:35:52.079 --> 00:35:54.519
it's something we definitely need to be talking about. I agree,
667
00:35:54.679 --> 00:35:58.119
appreciate you well. Thanks everybody for joining us. I'll see
668
00:35:58.159 --> 00:36:03.679
you next time. Take good care. Visit beautifully hyphencomplex dot
669
00:36:03.719 --> 00:36:07.960
com for more resources, coaching and parent training. And help
670
00:36:08.039 --> 00:36:10.760
another kid by sharing this with someone who could benefit
671
00:36:11.000 --> 00:36:11.719
from listening.