Episode 12: PANDAS – Could Your Child’s Behavior Changes Be Cured with an Antibiotic?

Episode Highlights

The Hidden Diagnosis
How PANDAS masquerades as sudden behavioral or psychiatric illness and is frequently missed or dismissed
Personal Story with High Stakes
Dr. Kumar’s daughter went from vibrant to withdrawn, anxious, and refusing food before the correct diagnosis unlocked a rapid recovery
Why It’s Misunderstood
Common testing pitfalls, lack of awareness among physicians, and the cost of being told it’s “just mental illness”
Mechanism Explained
Molecular mimicry, streptococcal triggers, and the autoimmune attack on the basal ganglia that causes dramatic behavioral shifts
Treatment That Works
Real-world impact of antibiotics (why one failed and another succeeded), plus other modalities like IVIG, plasma exchange, anti-inflammatories, and surgical considerations
Advocacy Roadmap for Parents
Concrete steps to get testing, interpret negative swabs, pursue strep antibody evaluation, and push for appropriate care when doctors aren’t listening

Show Notes

In this episode, Dr. Ravi Kumar pulls back the curtain on PANDAS, a treatable autoimmune condition that often gets misclassified as childhood psychiatric or behavioral disorder. You’ll learn:

What PANDAS is—Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and why a common strep exposure can suddenly derail a child’s behavior and mental status
The personal case—the trajectory of Dr. Kumar’s daughter, initial confusion, negative throat swab, the importance of antibody testing, and the dramatic response to the right antibiotic
Diagnostic blind spots—why many physicians don’t recognize PANDAS, the shame of missing it even as a brain specialist, and how families get labeled with vague psychiatric diagnoses instead of getting to the root cause
Pathophysiology in plain language—molecular mimicry, how antibodies against strep cross-react with brain tissue (especially basal ganglia), and historical context including rheumatic fever and Sydenham’s chorea
Epidemiology and the scale of missed cases—why the condition is under-recognized, conservative estimates (roughly 1 in 200 children), and how asymptomatic strep carriers facilitate spread
Treatment hierarchy
- Antibiotics: initial failure with one agent (Augmentin) and rapid remission with another (azithromycin), implications about strain differences and persistence
- Adjunctive therapies: IVIG, plasma exchange, anti-inflammatories, and when surgical approaches (tonsillectomy/adenoidectomy) might be considered
Real-world evidence—parent-reported outcomes, recurrence strategies, and the importance of persistence when first treatments don’t work
What parents can do—step-by-step guidance: request throat and perianal swabs, pursue antibody testing if swabs are negative, build a timeline, and find an open-minded clinician
The cost of disbelief—stories of physicians dismissing PANDAS, and why curiosity and advocacy are essential to avoid prolonged suffering
Call to action—share the episode, watch for behavior changes in children, and don’t accept dismissal without investigation

By the end of this episode, listeners will understand how to spot PANDAS, the practical diagnostic path, the treatment options that can reverse suffering, and how to advocate effectively for their child when the medical system falls short.

Transcript

[00:00 –> 00:25] On this episode of the Doctor Kumar Discovery Podcast. So if this episode helps one child, if it spares one family the heartbreak of not knowing what is happening to their child, it will have been worth it. We were watching our beautiful, vibrant daughter slip into something dark. She was trapped in a place we couldn’t reach. I felt ashamed that here I was, a board certified neurosurgeon trained in the management of the brain, and I hadn’t even heard of PANDAS.

[00:25 –> 00:49] If you see a child who’s suffering, this episode might be the lifeline they’ve been waiting for. My name is Doctor Ravi Kumar. I’m a neurosurgeon in search of the causes of human illness and the solutions that help us heal and thrive. I want you to join me on a journey of discovery as I turn over every stone in search of the roots of disease and the mysteries of our resilience.

[00:49 –> 01:07] The human body is a mysterious and miraculous machine with an amazing ability to self heal. Let us question everything and discover our true potentials. Welcome to the Doctor Kumar Discovery. Welcome to the Doctor.

[01:07 –> 01:32] Kumar Discovery Podcast. I’m Doctor Ravi Kumar, a board certified neurosurgeon and assistant professor at UNC. On this show, I question everything, especially medical doctrines that shape how we think about health. My goal is simple, to help you cut through the noise, look at complex health topics with a clear, unbiased perspective, and gain the knowledge you need to take care of your own health and health of the people you love.

[01:32 –> 02:05] Today’s episode is a bit of a departure from our usual deep dives. We’re talking about a specific disease, one that many people, including doctors, have never heard of. It’s called PANDAS, which stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. PANDAS is a post infectious autoimmune condition. In certain children, a simple strep infection can trigger an immune response that mistakenly attacks the brain, leading to severe, sudden changes in behavior, mood, and neurological function.

[02:05 –> 02:23] You might be wondering, Doctor Kumar, why talk about something so rare, so obscure? I hadn’t heard of it either, and I get it. But then it happened to my daughter, and that changed everything. I learned that PANDAS isn’t as rare as we think. It’s just under recognized and under diagnosed.

[02:23 –> 02:39] Many children suffer because no one connects the dots. Parents are left confused. Doctors often miss it or don’t even know what it is. And the children, they’re caught in a storm that no one sees coming. The truth is, PANDAS can devastate a child’s life and their families.

[02:39 –> 02:59] But here’s the thing, it’s treatable, and in many cases, it’s curable. All it takes is awareness and a doctor willing to treat. So if this episode helps one child, if it spares one family the heartbreak of not knowing what is happening to their child, it will have been worth it. And who knows? By listening today, you may gain the knowledge to change the course of someone’s life.

[02:59 –> 03:16] Knowledge is power. And in this case, knowledge is the potential to save the brain of a child. A quick disclaimer before we go any further. I’m a medical doctor, but I’m not your doctor. This podcast is for informational purposes only.

[03:16 –> 03:33] My goal is to give you unbiased information and knowledge that helps you take control of your health and the health of your family. Knowledge is power, and I want this podcast to empower you. Okay. Let me tell you about my experience with PANDAS. My daughter, who had always been a bright light, incredibly intelligent, creative, and full of life, suddenly became a different person.

[03:33 –> 03:44] Almost overnight, she became reclusive. She retreated to her room and didn’t want to come out. She cried inconsolably. She stopped eating. She couldn’t explain what was wrong.

[03:44 –> 04:01] She could barely actually even talk. At first, we thought something might have happened socially, something at school or with her friends. But after digging, we couldn’t find anything. I can’t even begin to tell you how scared we were. We were watching our beautiful, vibrant daughter slip into something dark.

[04:01 –> 04:24] She was trapped in a place we couldn’t reach, and we had no idea why. We went to her doctor who recommended counseling. In the meantime, we tried everything we could think of: anti-inflammatory supplements, herbal treatments, dietary changes, meditation. We were grasping at straws, and day by day, she was getting worse. I reached out to my brother and his wife, who are both physicians.

[04:24 –> 04:49] My sister-in-law shared our daughter’s symptoms in a physician’s Facebook group, and one of the doctors there said, that sounds like PANDAS. None of us had heard of it. I looked it up. Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. It was new to me, and I felt ashamed that here I was a board certified neurosurgeon trained in the management of the brain, and I hadn’t even heard of PANDAS.

[04:49 –> 05:06] But the more I learned about it, the more it all started to make sense. Just a week before all this started, my daughter had a sore throat. It had resolved on its own, and we didn’t think much of it. But now, our world was caving in on us. We went back to our doctor and asked if she could be checked for PANDAS.

[05:06 –> 05:21] Our doctor, who was a good doctor, a thoughtful family physician, had never heard of it either. So I explained it to her and asked if she would do a strep swab. The swab came back negative. No strep detected. And again, we were told to pursue counseling.

[05:21 –> 05:43] But I had read that swabs can come back negative. Even when the child is in the depths of their battle with PANDAS, the next step would be to check strep antibodies that can remain elevated even after the infection is undetectable with the swab. So I asked our doctor to order the antibody test. Two days later, the results came back. Her strep antibodies were sky high.

[05:43 –> 06:00] Finally, we had an answer. Our daughter had PANDAS, a treatable bacterial infection that was stealing our daughter away from us. She was started on an antibiotic called Augmentin, and we held our breath, praying that this would cure her. But it didn’t. Nothing changed.

[06:00 –> 06:25] And that scared me. Because if strep was the trigger and we were treating it, why wasn’t she getting better? The theory behind the treatment is that if you eliminate the infection, the immune system will stop attacking the brain and the symptoms of PANDAS would resolve. So I went back to her doctor and asked her to try a different antibiotic, azithromycin. And within two days of starting azithromycin, our daughter was back.

[06:25 –> 06:46] I’m not exaggerating. She returned to herself like a light had been switched back on after weeks in the dark. It had been hell watching her suffer, unable to explain it, unable to reach her. We watched helplessly as the light in her eyes went dim. And then with the magic of a ten-day antibiotic course, she was back to completely normal.

[06:46 –> 07:25] I still breathe a sigh of relief to this day. And I also still think about all the children and all the families who have gone through the same thing but never found the answer, who were told it was just mental illness, that this hell was just their unfortunate lot in life, and their children were prescribed psychiatric medications for something that may have been treatable with antibiotics or other curative therapies. They didn’t know the true etiology of their child’s illness, and so the autoimmune assault continued ravaging these child’s brains without treatment. How many children has this happened to? We don’t know, but it’s likely been happening for the history of civilization.

[07:25 –> 07:48] And the sheer amount of morbidity is unknowable and likely unfathomable. Currently, what we estimate is this. With the most conservative estimates, meaning the best case scenario, one in two hundred children will develop PANDAS. And the likelihood of misdiagnosis is high due to a general lack of knowledge in both doctors and patients. So what does PANDAS actually look like?

[07:48 –> 08:36] Well, back in 1998, a doctor named Susan Swedo published a paper defining PANDAS as the abrupt onset of obsessive compulsive behaviors in tics in children. The tics could be motor, like facial contractions, or vocal, like repeated throat clearings, grunts, even inappropriate words or sounds. These symptoms often appeared suddenly in previously healthy children and were sometimes accompanied by writhing movements, hyperactivity, or ADHD like behavior. Importantly, these episodes almost always occurred before puberty and they followed a relapsing remitting course with explosive flare ups followed by periods of partial recovery. And these episodes were consistently linked in time to infections with group a beta hemolytic streptococcus, the bacteria involved in strep throat.

[08:36 –> 09:14] Since that original definition, the medical community has expanded the list of symptoms we now associate with PANDAS. In addition to OCD and tics, these children may experience severe anxiety, irritability, depression, sleep disturbances, food refusal, or sudden aggression. My daughter, as I mentioned earlier, experienced anxiety, irritability, depression, and food restriction. Other children may present differently, but what unites these cases is that sudden dramatic shift in behavior that follows a strep infection. Often families can pinpoint the day that their child transformed, and many times, they never even knew their child had a strep infection.

[09:14 –> 09:35] So how does something as common as strep lead to these kinds of psychiatric or neurological symptoms? Well, that brings us to a concept known as molecular mimicry. When your body encounters a strep infection, the immune system makes antibodies to fight it off. Think of an antibody like a puzzle piece. It’s designed to fit a specific protein on the surface of the strep bacteria.

[09:35 –> 09:56] Once that match is made, it signals the immune system to destroy the invader. But sometimes, that same antibody also happens to fit a protein found on our own cells. The immune system doesn’t know the difference. It sees the antibody attached and assumes it’s fighting an infection, so it starts attacking our own tissues. That’s the basic mechanism of autoimmunity.

[09:56 –> 10:17] And in PANDAS, it’s the brain, specifically regions like the basal ganglia deep in the child’s brain that become the unintended target. Now this isn’t a new concept. We’ve known for decades that streptococcus can trigger autoimmune diseases. The most well known example is rheumatic fever. It shows up two to four weeks after an untreated strep infection.

[10:17 –> 10:48] In rheumatic fever, the immune system starts attacking the heart, leading to inflammation, scarring, and long term damage. The same immune reaction can also attack the joints causing a migrating arthritis, and it can affect the brain’s movement centers as well. That condition is called Sindenham’s chorea. It causes involuntary riding movements and is directly linked to strep triggered autoimmunity in the brain. In fact, studies suggest that about twenty to thirty percent of children with rheumatic fever develop Sindenhance chorea.

[10:48 –> 11:25] So we’ve known for a long time that strep infections can cause the immune system to attack the brain. What’s different with PANDAS is how it manifests with sudden onset psychiatric symptoms, OCD, anxiety, emotional outbursts, food refusal, and profound changes in behavior. And another important factor to consider is that streptococcus is everywhere. In fact, studies show that about twelve percent of healthy children carry group a beta hemolytic strep, the same bacteria responsible for strep throat and PANDAS, but they show no symptoms. They’re what we call asymptomatic or silent carriers.

[11:25 –> 11:52] They don’t get sick, but they can still infect others. And for some kids, that exposure can trigger not just a sore throat, but autoimmune conditions like PANDAS. Among children who show up to the doctor with a sore throat, about thirty percent of those cases turn out to be caused by strep. And rates of strep infections are significantly higher in school age children, likely because they’re passing it back and forth with close contact. The tricky part is that we never know who the carriers are.

[11:52 –> 12:22] They’re healthy, active, and completely unsuspecting, yet they’re harboring the bacteria and distributing it amongst their peers. This is one of the reasons I felt so strongly about doing an episode on PANDAS. Because here, we have a ubiquitous bacteria circulating through every classroom, quietly carried by healthy kids who show no symptoms, and yet this same bacteria is capable of mimicking the human body and triggering an autoimmune attack on a child’s brain. It’s not rare. It’s not obscure.

[12:22 –> 12:40] It’s there, present all around us. We’re not gonna eliminate strep from the world. That’s not realistic. But what is realistic is recognizing PANDAS when it occurs and knowing how to treat it when it does. Because PANDAS is treatable and curable, but only if it’s recognized.

[12:40 –> 12:52] Okay. So let’s talk about how PANDAS is treated. The first line of treatment is antibiotics. The idea is simple. If you kill the streptococcal bacteria, the body will stop producing antibodies against it.

[12:52 –> 13:10] Once the bacteria is cleared, the immune system calms down, b cells stop making the antibodies, and those antibodies stop attaching to the brain. The autoimmune inflammation stops. That’s exactly what happened with my daughter. We started her on azithromycin, and within two days, she was back to herself. It was extraordinary.

[13:10 –> 13:34] The sigh of relief my wife and I breathed, the tears we wiped from our eyes, it’s hard to put into words how grateful we were that we had figured out what it was and had been able to treat it. But what does the medical literature say about antibiotics in PANDAS? Well, the results are mixed, but many studies show clear benefit. One study looked at children with PANDAS. Seventeen were treated with azithromycin and fourteen received a placebo.

[13:34 –> 13:60] In the antibiotic group, seven out of seventeen had resolution of their symptoms. In the placebo group, only one child improved. That’s not overwhelming, but it’s meaningful, especially for a condition that often gets dismissed entirely. Penicillin, which is traditionally used to treat strep throat, has also been studied. In children with recurring episodes of PANDAS, doctors have tried prophylactic treatment, giving a low dose of penicillin or azithromycin daily for up to a year.

[13:60 –> 13:82] And this approach has significantly reduced both strep infections and PANDAS flares in children who have shown a pattern of recurrence. Some studies show more modest results. And the truth is, the data can feel a little scattered. But to me and to many parents, this next study is very meaningful. Researchers surveyed 675 parents of children with PANDAS.

[13:82 –> 14:00] They asked them what treatments worked and how well. There is no better judge of a child’s health than their parents. They live and breathe every up and down their child experiences. So if you ask to me, what’s more reliable, what a researcher says works or what a parent says works? I’d resoundingly say the parent.

[14:00 –> 14:28] And here’s what the parent said. They reported benefits in treating PANDAS from a range of antibiotics, including amoxicillin, azithromycin, Augmentin, cephalosporins, clindamycin, doxycycline, and flagell. But the ones that stood out the most were azithromycin, Augmentin, cephalosporins, and clindamycin. Of those, azithromycin was the most commonly used. Parents said azithromycin was very effective twenty six percent of the time and somewhat effective thirty five percent of the time.

[14:28 –> 14:43] Clindamycin actually had even stronger results. Forty one percent of parents said it was very effective. Now here’s something interesting. Our daughter was initially prescribed Augmentin, and she didn’t get better. It wasn’t until we switched to azithromycin that she improved almost immediately.

[14:43 –> 15:03] That tells me two things. First, not all antibiotics work equally in every case. And second, if one antibiotic fails, don’t give up. Try another. Different strains of strep may respond differently, and some antibiotics may have other effects on the immune system or inflammation, and those are things that we’re just starting to understand.

[15:03 –> 15:23] This same study also looked at longer antibiotic courses, those lasting more than thirty days. And again, parents reported better outcomes compared to short term use. That aligns with what many clinicians have observed in practice. When short courses don’t work, extended antibiotic therapy often does. So even if the literature is mixed, one thing is clear.

[15:23 –> 15:42] Antibiotics help many of these children. They helped my daughter, and they’ve helped many families get their kids back. Now let’s talk about other treatments that have shown promise. One is IVIG, which stands for intravenous immunoglobulin. This is essentially plasma collected from healthy donors rich in normal antibodies.

[15:42 –> 16:08] The idea is that these donor antibodies can help bind and neutralize the child’s autoimmune antibodies, the ones that are attacking their brains. In a double blind randomized controlled trial, IVIG showed short term improvements compared to placebo. And when the placebo group was later given free access to IVIG, over half of those children went into full remission. That’s not a small effect. Another option is therapeutic plasma exchange or plasmapheresis.

[16:08 –> 16:42] This involves removing the child’s plasma, part of the blood that contains the PANDAS antibodies, and replacing it with donor plasma that doesn’t carry the harmful antibodies. In one randomized controlled trial, plasma exchange actually outperformed both IVIG and placebo with a seventy eight percent reduction in symptoms. Then there are anti inflammatory drugs like ibuprofen and naproxen. These have shown benefit in about forty two percent of children, especially for symptom relief during flares. Short bursts of corticosteroids can also help reducing the duration of symptoms by about three and a half weeks.

[16:42 –> 17:15] These don’t fix the underlying problem, but they reduce the immune system’s inflammatory response. It’s important to understand: Antibiotics, IVIG, and plasma exchange are designed to treat the cause, to remove the trigger or quiet the autoimmune reaction. Anti inflammatories and steroids help with symptom control, but they should not be used alone. Other supportive treatments like cognitive behavioral therapy or SSRIs, which are medications often used in OCD or depression, can be helpful, especially when symptoms linger. But again, these are not cures.

[17:15 –> 17:45] They help manage behavior and mood, but they don’t eliminate the root cause. And if you treat only the symptoms without addressing the underlying infection or immune response, you’re missing the boat, and the child will pay the price for it. Another therapy that’s generated interest, though the data is limited, is tonsillectomy. The theory here is that the tonsils and adenoids can act as safe havens for strep bacteria. They can harbor biofilms, which are protective layers where strep can hide from the immune system and serve as a source of repeated PANDAS flares.

[17:45 –> 18:02] In one clinical trial, nine children with PANDAS underwent tonsillectomy. All nine improved. And four of them had complete resolution of symptoms and remained symptom three for three years after the procedure. Those results are hard to ignore. Now other trials have not shown a benefit for surgery over antibiotics.

[18:02 –> 18:20] But if repeated PANDAS attacks are ruining a child’s life, tonsillectomy may be a salvation. So what’s the takeaway? Well, PANDAS is treatable and oftentimes curable, but only if recognized. And that right now is the greatest challenge. Most parents haven’t even heard of it.

[18:20 –> 18:43] Many doctors haven’t either. So children with new diagnoses of OCD, depression, ADHD, tics, or aggressive behavior are often treated with medications that only mask the symptoms, while the root cause, a bacterial infection triggering autoimmunity, goes unrecognized. This is something we can do better. We have to. Let me give you another story.

[18:43 –> 19:01] My sister in law’s daughter also developed PANDAS after a streptococcal infection. She developed a facial tick and stopped eating. Classic symptoms. Anorexia or the refusal to eat is actually very common in PANDAS. Thankfully, her pediatrician at the time knew about the condition and treated her appropriately.

[19:01 –> 19:18] She responded beautifully. But a little while later, she had a recurrence. This time, though, they had a new doctor. So my sister-in-law takes her in and explains what happened the last time, that her daughter had developed PANDAS after a strep infection, had been treated, and had improved. And do you know what that doctor said?

[19:18 –> 19:49] He said, I don’t believe in PANDAS. That blew me away. The lack of curiosity and compassion in this doctor seemed nearly unforgivable because we’ve known for centuries that streptococcus can cause autoimmune diseases. In 1685, Thomas Sindenham described rheumatic fever, and in 1880, JK Fowler connected streptococcus to rheumatic fever, laying the foundation for what we now understand about post streptococcal autoimmune diseases. It’s been over a century since that connection was made.

[19:49 –> 20:18] And in 1998, doctor Susan Suido published the first formal definition of PANDAS, giving us a framework to recognize and treat this very real condition in children. And yet here we were with a physician in 2022 saying, I don’t believe it. That doctor lacked curiosity and compassion, two of the most important qualities in a physician. This doctor wasn’t just dismissing a theory. He was dismissing a child’s suffering because he wasn’t willing to learn something new.

[20:18 –> 20:53] And I told my sister-in-law, point blank, fire that doctor. And that’s exactly what she did. So here’s my actionable advice. For all the parents out there or uncles, aunts, grandparents, friends, anyone who loves a child and wants to see them thrive. If you notice a child who’s changed abruptly, they’ve become withdrawn or depressed, they’ve stopped eating, become obsessive or compulsive, fidgety or hyperactive, developed a facial or vocal tic, if they suddenly transformed from a vibrant and joyful child to anxious, scared, or unreachable, ask their doctor to swab their throat for strep.

[20:53 –> 21:31] If the throat swab is negative, don’t stop there. Ask them to swab the perineal and perineal areas, which can be another hiding spot for strep, especially when the throat looks clear. And if those swabs come back negative, ask your doctor to check their strep antibodies in the bloodstream. If all that comes back negative, ask your doctor to perform a full infectious workup, as rarely other infectious agents can cause many of the same symptoms through the same autoimmune mechanism. If you catch PANDAS early, you might be looking at something treatable, something reversible, curable, something that could bring that child back from the depths of emotional and neurological suffering.

[21:31 –> 21:49] And if your doctor won’t listen, find a new one. Find a physician who’s open minded and attentive. Share with them the full timeline, when symptoms started, any recent illnesses, strep infections, behavioral changes. Give them what they need to see the pattern. But don’t accept being told, I don’t believe in PANDAS.

[21:49 –> 22:07] That’s not science. That’s ego. And a doctor who refuses to investigate a legitimate documented condition, especially one that’s treatable and in a suffering child, doesn’t belong on your team. The reason I chose to make this episode is simple. I want the world to have this disease on their radar.

[22:07 –> 22:25] The amount of suffering we could prevent, the number of lives we could improve could be enormous just by recognizing something that medicine has been slow to acknowledge. So now you know what to look for. And if you think someone else could benefit from hearing this, please share it. Knowledge is power. It always has been.

[22:25 –> 22:47] And the greatest gift you can give someone is to empower them with information that could change their lives. If you know a family that’s struggling, if you see a child who’s suffering, this episode might be the lifeline they’ve been waiting for. That child may not have PANDAS. But if they do, and this helps them get the right diagnosis and treatment, you won’t just be helping a child. You’ll be changing a whole future.

[22:47 –> 23:10] Okay. So I hope you found that valuable. In our next episode, we’ll continue with the tribulation series, where I tell medical stories we can learn from, be inspired by, or simply just enjoy. I’ll tell the story of how a children’s book author changed the field of neurosurgery forever in order to save the life of his own son. It’s a story of creativity, ingenuity, and victory against all odds.

[23:10 –> 23:16] I think you’re really gonna like it. So until next time, stay curious, stay critical, and stay healthy. Cheers.