369: PANDAS: When Strep Inflames Your Child’s Brain

with Andrea Jones, Rn, BSN, FHP

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Rage that comes out of nowhere. A glassy, far-away look in your child’s eyes. Bedwetting after years of dry nights. Sudden separation anxiety in a kid who used to walk into school without a backward glance. These aren’t always “just” neurodivergence — sometimes they’re signals of something medical happening in the brain and nervous system.

I’m bringing back nurse and functional medicine practitioner Andrea Jones for a conversation about PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. We discuss what it actually is, what it looks like day to day, and how it can hijack a child’s nervous system almost overnight.

Andrea’s own daughter was diagnosed with PANDAS after a strep infection triggered a sudden shift into rage, OCD-like behaviors, noise sensitivity, and a total loss of skills she’d already mastered. Andrea walks us through the strep connection, the tests that can help confirm a diagnosis, and treatment options ranging from antibiotics and IVIG to homeopathy, and why recovery is measured in years, not weeks.

We also talk about what it means to parent differently when your child’s nervous system has been altered by illness, how the goal has to shift from obedience to safety and co-regulation, and why trusting your gut as a parent matters so much when the medical world is still catching up.

If you’ve ever wondered whether an abrupt, dramatic change in your child’s behavior could be about more than “just” ADHD or autism, this episode will give you language, validation, and a place to start. Listen now to hear Andrea’s story and what she’s learned about supporting kids through PANDAS recovery.

For most parents, a sudden personality change in a child reads as a discipline problem. The eye-rolling, the shouting, the refusal to put shoes on — it looks like defiance. But for a growing number of families, that overnight shift is actually a medical event happening inside the brain, and it has a name: PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.

Andrea Jones, a registered nurse who spent fifteen years working bedside in pediatrics before launching her own functional medicine practice, knows this territory from both sides of the exam table. Her daughter was diagnosed with PANDAS in 2018, and the change, she says, was immediate. “Within two days of getting a strep infection and getting antibiotics, she was not the same,” Jones recalls.

PANDAS occurs when strep antibodies, through a process called molecular mimicry, begin attacking cells in the basal ganglia, the part of the brain involved in movement and behavior regulation. The result can look like obsessive-compulsive disorder, sudden rage, separation anxiety, noise sensitivity, or a loss of previously mastered skills. For Jones’s daughter, it showed up as hours of unreachable screaming. “There was this glossy look in her eyes,” Jones says, describing what clinicians call an allergic shiner and a common, almost trance-like stare in affected kids.

Diagnosis remains largely clinical, based on symptom presentation rather than a single definitive test, though a strep antibody test or a more specialized neural panel can help confirm what’s going on. Treatment ranges widely: antibiotics, anti-inflammatories, IVIG immune therapy, low-dose naltrexone, or, for Jones’s own family, homeopathy after conventional options didn’t bring improvement. Recovery, she says, typically spans two to three years, though it can take longer, and it isn’t linear. “I would say we’re not at a point where she’s a hundred percent who she was before,” Jones says, “but every day we’re seeing more and more of her.”

What makes PANDAS especially disorienting for parents is how thoroughly it upends ordinary parenting instincts. Consequences and timeouts, the standard tools of behavior management, don’t work on a nervous system in the middle of an inflammatory event. Jones describes having to abandon the goal of obedience altogether. “My goal in my parenting had to switch from I’m trying to get her to change her behavior to my only goal is that her brain heals and I stay calm,” she says. Boundaries around safety stayed in place, but the underlying aim shifted entirely toward regulation, connection, and time.

That shift, from managing behavior to supporting a dysregulated nervous system, is the throughline that connects PANDAS recovery to the broader work of raising any child whose brain processes the world differently. Whether the cause is autoimmune, developmental, or some combination the medical system hasn’t fully mapped yet, the same principle holds: a child in an unregulated state cannot access their best skills, and a parent’s job in that moment is not correction but co-regulation.

Jones’s biggest piece of advice for parents who suspect something more than typical behavior is at play is simple: trust the instinct enough to ask. “If you have this just kind of hunch, like something just doesn’t quite feel right,” she says, pursuing an answer costs little. Being wrong means peace of mind. Being right means a child gets treatment for what is, fundamentally, a medical illness — one that responds not to punishment, but to patience, medical care, and a parent willing to relearn what parenting looks like.

3 Key Takeaways
01

A sudden, dramatic shift in a child’s behavior is worth investigating medically, not just managing behaviorally, because sometimes the nervous system itself has been hijacked by something the body is fighting.

02

When a child cannot access calm, cooperative behavior, the parenting goal has to shift from obedience to safety and regulation, because you cannot discipline a nervous system back into balance.

03

Recovery from a dysregulating medical event is a marathon, not a sprint, and healing in stages, with plenty of setbacks along the way, is still healing.

What You’ll Learn

What PANDAS is and how a strep infection can trigger sudden neurological and behavioral changes in a child

The signs that may point to PANDAS or PANS, including rage, separation anxiety, noise sensitivity, and skill regression

What medical tests and treatment options exist, from strep antibody testing to IVIG, antibiotics, and homeopathy

Why the standard parenting playbook of consequences and timeouts doesn’t work when a child’s nervous system is dysregulated by illness

How to trust your gut and advocate for your child when the medical system is still catching up to what you’re observing at home

My Guest

Andrea Jones, Rn, BSN, FHP

Andrea Jones is a registered nurse, functional health practitioner, author, and neurofeedback provider with 20 years of clinical experience. She spent her formative years of training in conventional medicine, specializing in pediatric acute and intensive care, as well as a clinical nurse instructor at a local nursing college before launching a functional medicine practice in 2019. She has 2 daughters, one of which has a complex medical/behavioral diagnosis.

Resources

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Transcript

369 PANDAS: When Strep Inflames Your Child's Brain, with Andrea Jones, Rn, BSN, FHP
Penny Williams: [00:00:00] Welcome back to Beautifully Complex, everyone. I have Andrea Jones back with me on the podcast to talk about PANDAS this time — what it is, and even more importantly, I think, what signs we can look for in our children, and if they have PANDAS, what we can do. So Andrea, will you start by letting everyone know who you are and what you do, for anybody who didn't listen to the last episode and doesn't know you?
Andrea Jones, RN, BSN, FHP: Yeah, absolutely. My name is Andrea Jones. I'm a registered nurse, bachelor's of science in nursing. Not that that matters for everybody listening, but I went to school for a fair amount of time to get my nursing degree, and spent the first 15 years of my career working bedside in pediatrics before leaving the hospital setting and launching a functional medicine practice.
So now I work primarily with women and children — with women on a [00:01:00] lot of complex health issues, hormone balancing, and with families and children who have complex medical diagnoses, really just getting to the root of those issues. I left the hospital setting for a lot of reasons, but one of those reasons — and the timing is really weird when I look back — is that I actually resigned, and then my daughter got sick two months later. I see now that there was kind of a grace on me not having to work 13-hour shifts, but I didn't know that was coming. We'll talk a little more about that, but that's what I do.
And I've got two girls, one of whom is recovering from PANDAS, and was diagnosed with PANDAS in 2018.
Penny Williams: It's been several years then. Yeah.
Andrea Jones, RN, BSN, FHP: Half her life at this point, yep.
Penny Williams: Wow. So talk to us a little bit about what PANDAS is [00:02:00] first.
Andrea Jones, RN, BSN, FHP: Absolutely. PANDAS has been around since the early 1980s. It stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. There are two umbrella terms people are hearing more commonly now — PANDAS and PANS. PANS is Pediatric Autoimmune Neuropsychiatric Syndrome, which can stem from mold, Lyme, or another type of infection.
But essentially it's the same diagnostic criteria: there's a preceding infection. For my daughter, it was strep. For many kids, it's strep. Through molecular mimicry, the antibodies to strep look very similar to specific cells in the brain, and the body begins to attack those cells [00:03:00] in the basal ganglia.
For many kids, that looks like obsessive compulsive disorder, anxiety, meltdowns, rage. There are quite a few symptoms that fall in this category. The diagnostic criteria includes that acute phrase — it typically happens very quickly after the strep infection.
Now, I personally think that needs to change. Professionally, what I've seen is that it's not always acute. Sometimes it's, "he was getting sick a lot, and then his behavior started to change," and then they get the PANDAS diagnosis. For my daughter, it was overnight. Within two days of getting a strep infection and antibiotics, she was not the same. It was a very immediate, observable difference in her [00:04:00] that scared the ever-living daylights out of me, partly because I knew what PANDAS was — I'd been trained to observe for it in pediatrics.
But in our hospital setting, we weren't really seeing it much, maybe because it's mainly diagnosed outpatient. I think I had one patient diagnosed with it out of thousands of kids. But I knew it existed, and I knew I needed to take it very seriously — that something significant had just happened in her brain, with everything that comes with that: how long will it take to heal, and what do we do now?
So that's the diagnostic criteria for PANDAS, and what it looked like [00:05:00] for us.
Penny Williams: Is there a medical test?
Andrea Jones, RN, BSN, FHP: It's technically a clinical diagnosis, meaning we're looking at presentation of symptoms, but there are several tests that can confirm or validate it. One is a strep antibody test — especially if a kid comes to me and things were pretty abrupt. Kids can be silent carriers of strep; they may never have had a sore throat, which is weird, but it happens more than you'd think. It's a cheap, easy test that most physicians can order and get covered by insurance.
That's the first thing we want to rule out — elevated strep antibodies warrant further investigation. If we want to dig much [00:06:00] deeper, we might do a neural Zoomer panel, which looks at the neurotransmitters themselves and whether there are antibodies against them. It's amazing we can see that information. It's similar to the Cunningham Panel, more commonly used in conventional medicine, but the neural Zoomer is a bit more specific. Not all physicians order it.
Penny Williams: And are there other signs that might signal to a parent, "I should think about PANDAS," or "I should talk [00:07:00] to a clinician about this possibility"?
Andrea Jones, RN, BSN, FHP: Yeah, there are quite a few. For our daughter it wasn't anxiety, it was rage — she'd scream for hours. She was eight at that point, past the typical tantrum stage. It was completely unreasonable, completely unreachable. I remember looking at her and feeling like she was in there, but I couldn't get to her. There was this glossy look in her eyes — looking back at pictures now, it wasn't just my perception; she actually had a glassy look to her eyes, which is very common.
I didn't know it at the time, but it's common for these kids to have what we call an allergic shiner — purple under the eyes. Sometimes their eyes are really [00:08:00] bloodshot. There can be emotional regression, where they can't sleep alone at night, basically attachment anxiety where they don't want you to leave.
She went through a period where I suddenly couldn't leave her at school. Tremendous separation anxiety, when she'd never had that before — she was the kid who, dropped off at nursery at 11 months, said, "Bye, Mom," totally easygoing. For a lot of kids, bedwetting starts, or frequent urination that looks like a bladder infection but isn't. It really does impact almost every system in the body.
But what we're looking for diagnostically is that behavior shift — maybe intrusive [00:09:00] thoughts, hyperactivity, or noise sensitivity. That was a big one for us. She never had noise sensitivity before, and suddenly noises really bothered her.
I can list some resources on the symptom profile for families, if that would be helpful. But those are common things we see with PANDAS.
Penny Williams: We can link some resources in the show notes so everyone can go check that out and investigate more. I'm wondering — is it something that could resolve on its own if you didn't catch it?
Andrea Jones, RN, BSN, FHP: The strep or the PANDAS?
Penny Williams: PANDAS.
Andrea Jones, RN, BSN, FHP: From what I've read and seen, no. There's some [00:10:00] anecdotal evidence it resolves in puberty, but that hasn't been my observation. My observation is that it morphs into something different — you have a little less hormonal chaos once you're through puberty, but the mental health issues are there, they just look different.
Professionally and personally, I don't believe it resolves on its own, based on what I've seen — not just with my own kid, but with all the other families I'm in contact with. It has to be treated medically, not just like a psychiatric illness where you add meds and therapy. It's also a medical illness that needs medical treatment.
Penny Williams: Right. I ask because as you were talking — my neurodivergent kid is a strep carrier, never had a [00:11:00] symptom ever. My other kid had constant strep for a long time, and we realized they were sharing a tube of toothpaste — we didn't know at the time you could carry strep without having strep symptoms.
He was just giving it back to her over and over. A lot of what you described fit for him at one point — different presentation, but it resolved over time. That's why I asked.
Andrea Jones, RN, BSN, FHP: Great question.
Penny Williams: Yeah, I just wondered — could it?
Andrea Jones, RN, BSN, FHP: I look back at my own history too — I had strep constantly growing up. They finally took my tonsils out when I was seven because, "we're sick of this, seven times a year." I was on antibiotics constantly, and I developed OCD at 13. I distinctly remember this fog settling over my [00:12:00] mind, a very slow progression. I remember sitting in my pediatrician's office, and he said, "We actually need to rule out that this isn't PANDAS, given how much strep she's had." At that time the diagnostic criteria required it to happen within two weeks of infection. Now they've broadened that.
So I've always wondered if I was a PANDAS kid who never got diagnosed. It's possible. I think it's one of those things we'll get better at recognizing and treating the more we actually listen to families. That's probably the biggest thing.
Penny Williams: The more we talk about it and the more people's minds are open to it.
Andrea Jones, RN, BSN, FHP: Exactly.
Penny Williams: Talk to us more about the treatment you mentioned. What does that look [00:13:00] like?
Andrea Jones, RN, BSN, FHP: Yeah, there's a conventional standard-of-care treatment: antibiotics, and IVIG for some kids — IV immune globulins that retrain the immune system. That was initially proposed by Dr. Swedo in the 1980s and has been a foundational treatment for a lot of families.
We now know antibiotics aren't entirely harmless, so you have to weigh those risks and benefits with your provider. I know families who've gone the IVIG route successfully. There's also LDN, low-dose naltrexone, or immunotherapy, which we know can be highly effective for a lot of these kids.
We opted for something completely unconventional [00:14:00] — and it's hard to describe living inside that decision, weighing this huge choice with no clear answer. I saw families go one direction and not get better, and other families go the same direction and get better. What's the right thing for my child? Whenever I talk to a family now, I make sure to spend time sitting in that space with them, because it's such a heavy decision. I felt this urgent sense that time was not on our side — inflammation in the brain for long periods isn't good; we needed to act.
Because she'd already had antibiotics for the strep, we knew that wasn't what she needed, but [00:15:00] I had personally administered IVIG in my nursing career and witnessed some of the side effects, and I didn't have peace about pursuing it for her. I didn't have a gut sense it was right for us.
So we went completely unconventional and worked with a homeopath who only worked with kids with PANDAS — they serve about 20,000 families worldwide. I'd watched families sharing their experiences, and I'd used homeopathy myself with real improvement, so we decided to try it. I remember giving her that first dose and seeing my kid come back. I hadn't seen her in a year, and there she was. [00:16:00] There are so many different ways to support these kids — peptides, immunotherapy, low-dose naltrexone, anti-inflammatories, IVIG.
The more we're listening to families and paying attention to how they respond, the better we'll get at knowing what to recommend, because every family is genuinely different — genetics and other factors mean what works for us may not work for the family next door. So, to answer the question: the standard conventional path is immunotherapy or IVIG, antibiotics, and usually an anti-inflammatory, whether steroids or ibuprofen. That's the typical starting point for a lot of families.
Penny Williams: And is [00:17:00] therapy part of that as well?
Andrea Jones, RN, BSN, FHP: It can be. I hate to say "should," but many children really do benefit from it, and if the child isn't benefiting, the family often needs it, because this is incredibly stressful on the family system. Our youngest daughter was three when her sister was diagnosed, and she didn't understand why her sister went from playing with her one day to telling her to shut up and get out of her face the next. There's real impact from that.
For our daughter, we did cognitive behavioral therapy, mainly so she had a place to practice skills outside of me teaching her — because I had to learn how to parent her differently, which flipped every [00:18:00] parenting ideology I had. My "how to parent 101" went in the trash, because that doesn't work for these kids. So yes to therapy — if not for the child, then for the family members who need it, because everyone will need support. We just rotated whoever was struggling into therapy that week.
It wasn't a perfect setup where everyone got to go every week — financially, that wasn't doable. But therapy helps. Neurofeedback can also really help these kids regulate their brains.
Penny Williams: So many things to think about. There are so many different aspects.
Andrea Jones, RN, BSN, FHP: That's why it's so overwhelming. I'd just say: start where you can. Do one thing [00:19:00], observe how your child does, and build in more as you're able. This is a marathon, not a sprint. I'm not sure I fully understood that at the beginning, which I'm almost glad about, because knowing upfront it would take a while would have been terrifying.
Penny Williams: What does that timeframe look like? I know it's different for everyone, but is there an average?
Andrea Jones, RN, BSN, FHP: I've heard mixed things, and I think it depends a lot on how long it takes to get the diagnosis. For some kids it's atrocious — ten years before diagnosis, which is insane; we know too much at this point for it to take that long. I think it's getting a little faster, but I've heard families say it took ten years. How long to diagnosis, how long to get treatment [00:20:00] on board, and how effective that treatment is — those are probably the three biggest factors in recovery time.
For us, we got the diagnosis immediately and started various treatments — antibiotics, anti-inflammatories. She didn't respond well, so we pivoted to homeopathy, and that's when we started seeing progress. That earlier time felt somewhat wasted, which I think contributes to overall recovery length. What I hear from a lot of practitioners is anywhere from two to three years is a standard recovery window, depending on those factors. Ours has been slower than that, but [00:21:00] I don't know that's the norm — I think that's just been our journey.
Penny Williams: When you use the word "recovery" —
Andrea Jones, RN, BSN, FHP: Mm-hmm.
Penny Williams: — are you saying PANDAS and all its behaviors are totally gone, or that it's better and this is a new normal?
Andrea Jones, RN, BSN, FHP: Good question — I should probably define that better. I believe this is close to the clinical definition too, though don't quote me, I haven't looked it up recently. When I say recovery, I mean that when she's exposed to a virus or bacteria, it no longer causes a neurological flare. She went from having a normal brain that could just have a fever, to one that attacked itself every time she [00:22:00] got sick. We actually had a party when she had her first normal fever, three years in, because her immune system was finally working properly.
Now she gets actual illness, not neurological illness, which is a huge sign the brain and autonomic nervous system have recovered. That's your brain stem, the primal part of the nervous system. All the learned behavior — cognitive function, emotional regulation — comes after that part recovers. We've seen a continual snowball of healing, where she'd lost a lot of executive function; she could unload the dishwasher before this happened, and one day I handed her a spoon and asked her to put it in the drawer, and she said, "I don't know what that is." Like someone who'd had a stroke. It was [00:23:00] literally that bad. She's had to regain a lot of those skills, and they have come back. So for me, recovery means no longer having neurological impact from illness — that's the foundational definition — plus continuing to recover everything she lost: emotional regulation, social skills, remembering to shower, remembering to brush her teeth and actually follow through.
All the things our kids "should" be able to do, that she lost. We're not at a point where she's 100% who she was before PANDAS, but every day we're seeing more and more of her.
Penny Williams: Yeah, totally. It almost sounds like what you'd expect [00:24:00] from a stroke or brain injury — some relearning, a lot of recovery after the medical piece is addressed.
Andrea Jones, RN, BSN, FHP: Absolutely. I'd describe it like a chemical concussion — not from a substance, but an inflammatory, concussive-type situation. She didn't hit her head, but the recovery mirrors exactly what you described. Imagine someone who's had a stroke and lost everything, having to regain all of it. That's what this is like.
Penny Williams: Let's talk about the parenting, because you said right from the start you had to parent differently. What does that look like, and how do [00:25:00] you start down that path? We talk a lot on this podcast in the neurodivergent parenting space about having to do things totally differently, so it's not a foreign concept here.
Andrea Jones, RN, BSN, FHP: Yeah.
Penny Williams: But I imagine it looks different than what we typically talk about.
Andrea Jones, RN, BSN, FHP: It's — where do I even start. It was so instant for us. I had to recognize really quickly that she wasn't responding to my previous style of parenting, where I could say, "It's time to put your shoes on, let's go to the store." Now that was an hour-long meltdown because her feet felt weird in shoes that had never bothered her before, or because I was changing her plan — she'd been playing with dolls five minutes earlier and now I'm telling her we're going to the store. At the very foundation, it was me [00:26:00] having to own and recognize that her brain was different now, her nervous system was different now, and that I had to learn what I didn't know yet, which felt overwhelming because I didn't know what I didn't know.
From the outside it looks like she's being a brat — not wanting to put shoes on, not wanting to sit in the car, screaming at her sister because the car was too loud. All my normal parenting strategies, which involved a consequence for behavior — a timeout, or losing a privilege later — none of that worked. My goal in my parenting had to switch from trying to get her to change her behavior, to my only goal being that her brain heals and I stay calm.
Penny Williams: Mm-hmm. Mm-hmm.
Andrea Jones, RN, BSN, FHP: Those are my only two [00:27:00] goals. We still had some boundaries within that — you don't get to hit people, you don't get to scream at people, you don't get to throw things. I wasn't going to let her be a total maniac; safety in the home is primary, number one. But I really had to let go of needing an obedient child in the moment, because she couldn't access those skills. I had to do a lot of rewiring of my own brain with every interaction — she's doing the best she can, but she can't do that right now. So how do I keep her safe? How do I keep her sister safe? How do I navigate this? It took a lot of undoing, [00:28:00] almost a death to self, because I realized how much I needed a sense of control in these situations, and I wasn't going to find it there. I had to figure out how to do something different.
A lot of books helped — Understanding Your Child with Intense Emotions was a big one, and The Explosive Child helped with rephrasing things. Instead of saying, "Can you do that?" I'd say, "I need you to do that," and that was almost a magic phrase for her — she'd just do it. There was a lot of trial and error, but the biggest shift was really understanding the deficit, understanding what she wasn't able to do, and redefining my goals as a [00:29:00] parent for what parenting needed to look like now, because the goal couldn't be obedience. It just couldn't.
Penny Williams: Exactly like what we do for neurodivergent kids. Honestly, The Explosive Child is one of our bibles for reframing behavior, thinking about "won't" versus "can't." So it's very similar. We don't have that medical component —
Andrea Jones, RN, BSN, FHP: Right.
Penny Williams: — but the behavior —
Andrea Jones, RN, BSN, FHP: It's the same.
Penny Williams: — you have to shift for that in your parenting.
Andrea Jones, RN, BSN, FHP: Absolutely. Or you destroy your relationship with your children, and I wasn't willing to do that. I got to a point where I didn't care if the in-laws didn't agree, or if my friends didn't agree. I have to follow my gut, and my gut is telling [00:30:00] me this will get better, but I have to do it differently. It was hard — lots of sweat and tears, lots of internal meltdowns.
Penny Williams: Yeah.
Andrea Jones, RN, BSN, FHP: And external ones, let's be honest. But yeah, very similar.
Penny Williams: Very similar. What else do we need to know about PANDAS before we wrap up?
Andrea Jones, RN, BSN, FHP: I'll just reiterate — if you have a gut feeling that this isn't "just" — and I'm putting up quotation marks, because it's never "just" neurodivergence, I'm not minimizing that — but if you have this hunch that something doesn't quite feel right and it's worth investigating, the worst case is you're wrong. But if you're right, [00:31:00] this has to be treated medically, not just emotionally and psychologically. My biggest encouragement to families is to listen to your gut.
I'm so thankful we had a physician who immediately listened. I told him, "I don't want to be right about this, I hate that this is even a thought in my mind, but I'm suspicious — please tell me if I'm wrong." He said he'd love to be wrong too, but we needed to do the blood work to confirm either way. We got very lucky with that. Don't be afraid to keep pushing for the help your child needs. It does get better, and kids do heal, though how they heal will look different for every family, based on those [00:32:00] same contributing factors. You will have to change your parenting, so get support on board as quickly as you can — this is a marathon. That's the thing I didn't know. I thought we'd be back to normal in six months. That denial kept me safe in a way, but get parenting support on board quickly, whatever that looks like for you, because this will flip things upside down. I like to think it made me a better mom — I do think it did. Do I wish it had happened differently? Yes, in terms of character development, I wish I hadn't had to go through that particular hell to build those skills. But here we are.
Penny Williams: One more quick question — do you feel mainstream pediatricians have this on their radar now, or does a parent still need to walk in and say, [00:33:00] "This is why I think it's this, can we explore it?"
Andrea Jones, RN, BSN, FHP: Good question. I'm split right down the middle. I think they're getting better at recognizing it, but even the first doctor we saw — our naturopath at the time — didn't take me seriously, and you'd think a naturopath would be more inclined to, given their training. I'd say it's 50/50. Go in prepared to say, "I'm concerned about this and want to rule it out." That's more than fair to ask for — it's your insurance covering it, you're the one paying for it, so it's okay to make that request.
If they don't listen and you still have that gut feeling, find someone who will. It's worth ruling out. I do think providers are getting better, but I also reached out to one of my favorite [00:34:00] pediatric immunologists just to hear her thoughts, and she was still very skeptical — in immunology, they consider it a neurological problem. Then I talked to a neurologist friend, who said, "that's immunology's problem." I said, well, they say it's yours, so whose problem is it? It affects both.
Penny Williams: You have to talk to each other and accept that all of these things work together — they're all connected.
Andrea Jones, RN, BSN, FHP: Exactly, so that's where things still stand. I do think it's improving — we're seeing a lot more of it discussed on social media, and more in the functional medicine space than conventional medicine. But I like to carry hope that conventional medicine isn't too far behind. It's hit or miss, but my advice is to come in prepared, be willing to ask for what [00:35:00] you need, and if the answer is no, find someone else willing to rule it out for you. That's what I did — I said, "I really want to be wrong about this, but I feel like we need to investigate whether this is happening," and that was pretty well received.
Penny Williams: Good. Yeah, things are changing for sure.
Andrea Jones, RN, BSN, FHP: Hopefully. Let's hope.
Penny Williams: Not as fast as we'd like.
Andrea Jones, RN, BSN, FHP: No, but I do think it is, in general.
Penny Williams: Well, thank you, Andrea. I'm going to add links you provide for more information about PANDAS and PANS in the show notes on my website. There will also be links to Andrea's website and social media and her work, so if you want to connect, learn more, or potentially work with her, you can do that as well. [00:36:00] So all of those resources will be there, and I hope you'll check them out. Thank you so much — this was really informative.
Andrea Jones, RN, BSN, FHP: I'm glad to have shared it, and glad to have learned a little more myself.
Penny Williams: Yeah — this is exactly what we need to be talking about.
Andrea Jones, RN, BSN, FHP: I agree.
Penny Williams: Appreciate you. Well, thanks everybody for joining us. I'll see you next time. Take good care.

hey there!

I’m your host, Penny Williams.

I help stuck and struggling parents (educators, too) make the pivots necessary to unlock success and joy for neurodivergent kids and teens, themselves, and their families. I’m honored to be part of your journey!

Hello!
I'm Penny Williams.

Host of Beautifully Complex. I help stuck and struggling parents (educators, too) make the pivots necessary to unlock success and joy for neurodivergent kids and teens, themselves, and their families. I'm honored to be part of your journey!

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IN < 3 MINUTES

Take my FREE Animal Instincts Quiz to understand your child's biological stress response and get focused on what will help you and your kid RIGHT NOW.

FREE VIDEO SERIES
Quick Start: 3 High-Impact Actions to Transform Behavior

Transforming negative or unwanted behavior is a long and complex process. HOWEVER, there are a few actions you can take right now that will provide a big impact. These 3 high-impact strategies address foundational aspects of behavior, empowering you to help your child feel better so they can do better.

A Few of My Favorite Tools

Time Timer

Makes time visual.

Mighty + Bright

Manage chores and routines while building self-confidence and independence.

Mightier

Blends gaming with off-screen activities to teach coping skills through play.

Howda Hug Chair

A chair that gives kids a sensory hug.

Binge the Latest Episodes
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368: Preparing for the Back-to-School Transition
Back-to-school dread is real. Here are five nervous-system-first shifts for mornings, bedtime, homework, and school meetings that make this year easier.
367 Main Post Image
367: Systems that Work with the Brain
Dr. Angela Kingdon built her career, and her own recovery from burnout, around one idea: systems only work when they work with the brain that is using them. Here is what she wants every parent of a neurodivergent...
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366: The Glass Child: The Neurotypical Sibling’s Experience
Your "easy" child may be hiding real struggle. Discover what glass child syndrome means for neurotypical siblings, and how you can help them heal.
365 Podcast Main Post Image
365: Autistic Burnout & Self-Care
Exhaustion sleep won't fix. Skills that vanish overnight. Dr. Megan Anna Neff explains autistic burnout and the validation-first approach that actually helps your child recover.
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Ready or not… the school year’s coming.

But chaos, meltdowns, and last-minute scrambling don’t have to come with it.

Back to School Prep Week is your 5-day, done-with-you plan to get your routines, supports, and emotional systems in place — before first-day tears, IEP surprises, and sensory overload can take over. Prep Week is for parents of neurodivergent kids who want:

You’ll get: