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I recognize that my posts span a wide range of topics. Some are spurred by headlines, or what is going around. Some are utterly random or written on a whim.
Once in a while they are done by request.
This is one of those:
Hey Nurse Judy, Could you consider doing a post about PANS/PANDAS...
It took 2 years to get a diagnosis for our son. We are pretty sure that his case was strep driven after an especially hard year of strep exposures. An earlier diagnosis and treatment could have saved us years of frustration…”
I shared the email with Dr Ted and he emphatically agreed this was a subject worth tackling.
What on earth is it?
If you are completely unfamiliar with this topic, you are not alone. So many people have never heard of it and that is one of the reasons that it isn’t an obvious consideration if your child might be dealing with suspicious symptoms.
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), is a group of conditions that are still poorly understood. It describes acute neuropsychiatric changes in children following certain infections. It was first discovered following strep throat (PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), but there’s mounting evidence that similar changes can occur in some children after other infections, like RSV or influenza.
“Neuropsychiatric” in this context most classically refers to tics and obsessive-compulsive-disorder (OCD) symptoms, but a whole host of behavioral changes have been described (below). The most classic story we hear is a child who has no psychiatric history, and the next day develops frequent blinking, head-twitching, has strong emotional reactivity, or other new behaviors.
Crucially, the change needs to be sudden and abrupt. It should feel like someone came in overnight and reprogrammed your child’s brain.
The definitive diagnosis is made with the following criteria:
Sudden OCD symptoms, or severely restrictive eating: Repetitive compulsions, severe fears, intrusive thoughts, or food refusal.
Additional neuropsychiatric symptoms: Abrupt and severe presentation from at least two of these domains:
Intense separation anxiety: Refuses to leave parents, school refusal, or intense worry.
Striking emotional dysregulation: Inconsolable crying, mood shifts, or depressive feelings.
Behavioral changes: Explosive tantrums, aggression, or marked irritability.
Developmental regression: Baby talk, clinginess, or acting like a much younger child.
Academic decline: Sudden deterioration in attention, focus, or school performance.
Motor or sensory changes: Tics, handwriting changes, motor restlessness, or sensory sensitivities.
Somatic changes: Sleep disruption, bedwetting, or new urinary frequency without infection.
Rule out other conditions: Presentation cannot be better accounted for by another medical or neurological condition.
Dr. Ted, frankly, believes that he has seen and successfully treated cases that did not meet this strict criteria. More on that later, but know that this is a quickly evolving landscape, and the PANS phenomenon may exist on a spectrum, where minor cases might not meet the threshold for treatment by major PANS centers. Bottom line: if you see sudden onset tics, it may be useful to ask your doctor if it is worth considering.
Getting listened to: Navigating the medical system
There are so many mysteries of the human body we haven’t yet figured out. And as much as we’d like medicine to have all the answers, the reality is that there are still plenty of conditions we’re only beginning to understand.
That uncertainty can be frustrating for everyone involved. Doctors are human, often working under enormous time constraints, and our healthcare system isn’t always designed to accommodate patients whose symptoms don’t fit neatly into a familiar diagnosis. When test results come back normal or symptoms don’t have an obvious explanation, it can be tempting to attribute them to anxiety or stress. And sometimes, anxiety really is part of the picture. But it shouldn’t automatically be the end of the conversation.
It’s also important to understand what different medical settings are equipped to do. The emergency room, for example, is designed to identify and stabilize immediate medical emergencies, not to investigate complex or chronic conditions. Being discharged from the ER doesn’t necessarily mean nothing is wrong. It means no emergency requiring intervention was identified at that moment. That’s an important distinction, especially for families who are understandably desperate for answers.
The challenge isn’t necessarily that individual doctors aren’t listening or don’t care. It’s that our healthcare system is often better equipped to address immediate, identifiable problems than to navigate the uncertainty of more complicated ones.
Our system is broken.
And managing that system, figuring out which specialists to see, getting referrals, and trying to connect the dots can be a nightmare.
Nurse Judy’s daughter Alana is a therapist, and offered to weigh in on this post. She’s also all too familiar with the medical gaslighting that comes with being told, “It must just be anxiety.”
After a lifetime of playing “stump the doctor,” and later developing Long COVID, she spent a lot of time trying to make sense of symptoms that weren’t easily explained, and finding a diagnosis of POTS (postural orthostatic tachycardia syndrome) finally gave her some answers, validation, and a clearer path toward managing her symptoms.
She often talks about how disheartening it is that we still treat physical and mental health as though they’re mutually exclusive. As a therapist, she’s the first to tell you that anxiety can cause very real physical symptoms. But she’s also quick to point out that having anxiety doesn’t mean something else isn’t going on.
And this is where advocating for your child becomes so important.
If your child suddenly develops anxiety, OCD symptoms, or dramatic behavioral changes, it’s reasonable for a doctor to consider psychological explanations. But those explanations shouldn’t automatically close the door on medical ones.
Alana encourages parents to come to appointments with a clear timeline of what they’ve observed, particularly when symptoms seem to have appeared abruptly or following an illness. Be specific about what’s changed, and don’t be afraid to ask questions. What else could explain these symptoms? What other possibilities should we be considering, and how can we explore them? If anxiety is part of the picture, could something physiological be contributing to it?
And perhaps most importantly, ask for a plan! Even when there isn’t a clear diagnosis, you should leave an appointment knowing what to watch for, when to follow up, and what might warrant further investigation or a specialist referral.
Approach advocacy as collaboration, not confrontation. The goal isn’t to convince a doctor that your child has PANS/PANDAS or to prove that someone is wrong. It’s to work together, stay curious, and make sure important possibilities aren’t overlooked.
You don’t need a doctor who has every answer. You need one who’s willing to keep asking questions with you.
What actually causes behavior changes in PANS?
The astute reader among us will note that many children develop strep throat in childhood (up to 30% of all children by some counts), but only a very tiny minority develop the behavioral symptoms listed above.
Why do some develop PANS/PANDAS and others do not? The short answer is we don’t know for sure.
High level science explanation warning! (Don’t worry, there won’t be a test)
One leading hypothesis is that, in certain susceptible children, an infection triggers an abnormal immune response that mistakenly targets parts of the brain involved in regulating behavior, emotions, and movement. This is sometimes referred to as molecular mimicry, where antibodies produced to fight an infection mistakenly recognize proteins in the child’s own tissues. Researchers have focused particularly on the basal ganglia, a region of the brain involved in movement, habits, and emotional regulation. Inflammation and disruptions in communication between brain cells could help explain why some children experience such sudden and dramatic changes in behavior.
However, it’s important to emphasize that this remains a hypothesis, not a proven explanation. Researchers have yet to consistently identify the specific antibodies, inflammatory markers, or immune mechanisms responsible, and the extent to which autoimmunity explains PANS/PANDAS remains an area of active scientific debate.
How is PANS treated?
The frustrating answer is that there isn’t one simple treatment that works for every child. There are things we can do now, and other treatments we are still trying to understand. Your child deserves help while we work through that uncertainty.
Treat an infection when there is one.
If a child has symptoms of strep throat and a positive strep test, we treat with the usual course of antibiotics. But antibiotics don’t treat every cause of PANS, and a past strep infection doesn’t automatically mean a child needs more antibiotics now. Long-term antibiotics have risks, and we don’t have enough evidence to recommend them routinely to prevent flares.
What about inflammation?
This is where you will hear different recommendations, even from experts. Some specialists use anti-inflammatory medicines such as naproxen or short courses of steroids in selected children. The evidence is limited, and these medicines have side effects; they should be considered with a clinician who can weigh the risks and follow the response. We have both seen good responses with this approach first-hand, but it’s not universal.
For severe cases that don’t respond to first-line treatment, there are now specialty clinics devoted to the advanced treatments of PANS. Stanford has a renowned Immune Behavioral Health Clinic.
Address potential mental health components
A child who is terrified, caught in rituals, or unable to attend school needs relief. Cognitive behavioral therapy (CBT), particularly exposure and response prevention (ERP) for OCD, can help children gradually face fears without getting trapped in compulsions. Sometimes medication, such as an SSRI for OCD or anxiety, is helpful too. These decisions should be individualized and monitored closely.
Accepting mental health care does not mean giving up on looking for a medical cause. We can do both. There is no reason to leave a child suffering while everyone debates the diagnosis.
Case Studies
We thought it might be helpful to see some real life examples of PANS/PANDAS to help get a sense of what things look like.
5-year-old with sudden unexplained full body tics
A 5 year old previously healthy fully vaccinated boy came down with known RSV. About a week or two after testing positive, he developed sudden onset fully body motor tics. His whole body would have sudden single convulsions. They were never constant, just sudden single jumps, like he’d been shocked. At their peak they were happening every minute or so. This prompted an overnight admission to have an EEG and rule out seizure activity. When nothing was found, it was assumed to be a post-viral reaction. He was prescribed naproxen (Aleve) around the same time, and after a couple days he saw significant improvement. To everyone’s vast relief, they fully resolved after two weeks.
7-year-old with sudden behavioral changes
This one is a direct re-telling from one of Dr. Ted’s patients!
“Here’s a quick overview of our experience when our son was first experiencing PANDAS symptoms:
Right as he turned 7, he experienced what we thought was a minor headcold. His physical symptoms were congestion, cough, and sore throat. He never had a fever, not had any change in appetite or sleeping patterns. A week later we took our annual spring break trip to visit his grandparents and during that week it felt as if his behavior had changed overnight. Our normally very happy, easy-going, responsible, first born child was having huge disproportionate tantrums lasting for hours on end. He started flapping his arms at the dinner table, knocking over his milk cups. He would get so upset and angry - unlike anything we had seen before. I recall wondering if he had received a concussion from falling while climbing on logs on the beach - I was grasping at straws trying to find a reason for his behavior.
Following the trip, we spend the month of April back home with continued escalation of his volatility and anger over every day tasks. His handwriting in school significantly devolved, and he regressed with his nighttime accidents. I reached out to his pediatrician (hi Dr. Handler!) in late April, hoping for a referral to a child therapist. Based off of Dr. Handler’s knowledge of Luke’s baseline behavior and our reported notes, he brought Luke in to be swabbed for strep, which was positive on May 1, and an initial diagnosis of PANDAS was given.
Luke’s OCD behavior was minor and didn’t really fall on our radar until after his diagnosis. He would spend hours sorting his Pokemon cards, and would become very angry if interrupted and would cause disruptions to our schedule and every day life. He would become fixated on an arbitrary outcome (i.e., “destroy mom”) and would not be soothed or satisfied until that need was met or until he was able to come out of his rage, which would often take days.
We are 7 months into treatment, and we are seeing huge progress with a monthly steroid course and daily guanfacine.
10-year-old with new tics and OCD
Another healthy young boy without personal or family history of OCD or tics presented with new onset vocal tics (throat clearing) and OCD symptoms (counting and tapping behaviors). He also couldn’t remember a history of sore throat, but he tested positive for strep throat in the office. He was treated with amoxicillin and naproxen for 2 weeks and improved quickly.
As you can see there seems to be a large spectrum.
What can parents do at home?
Alana emphasizes that even when symptoms have a physiological trigger, how we respond to them psychologically and behaviorally still matters.
When your child is struggling, your instinct is to do whatever you can to make them feel better. And of course it is. But sometimes, the things we do out of love can unintentionally reinforce the very symptoms we’re trying to help.
OCD is a particularly good example.
If a child suddenly develops an overwhelming fear of contamination, they might repeatedly ask whether their hands are clean, whether their food is safe, or whether something terrible will happen if they touch something.
Naturally, a parent wants to reassure them.
And that reassurance works! At least for a little while.
But then the question comes again. And again.
Repeated reassurance can become part of the compulsion itself. It provides immediate relief, but it can also teach the brain that uncertainty is dangerous and that reassurance is necessary to feel safe. Over time, that cycle can become more entrenched.
This matters regardless of what initially triggered the symptoms.
If an infection or immune response contributed to the sudden onset of OCD, addressing the underlying medical process may be important. But the behavioral patterns that develop around those symptoms deserve attention too.
So what does that actually look like for parents?
Instead of answering “Are you sure I’m not going to get sick?” for the tenth time, a parent might say, “I can see how scary that feels. We’ve talked about this, and I know your brain wants another answer. Let’s practice sitting with not knowing for a moment. I’m right here with you.”
It’s a small but meaningful distinction. You’re validating the distress without participating in the compulsion.
The same applies to avoidance. If a child becomes terrified of separating from a parent, avoiding every separation may relieve their distress in the moment, but over time, it can make separation feel increasingly impossible.
None of this means parents caused the symptoms, or that they should withhold comfort, reassurance about genuine safety concerns, or necessary medical care. It means they have an opportunity to help interrupt some of the patterns that develop around the illness.
And sometimes, particularly during an acute flare, a child may not have the capacity to tolerate these challenges yet. This is where working with a therapist trained in OCD and exposure and response prevention (ERP) can help families figure out when to encourage, when to accommodate temporarily, and how to make changes gradually.
The goal isn’t to eliminate your child’s discomfort. It’s to help them build the confidence and capacity to navigate it, without feeling like they’re doing it alone.
Support the whole family
Whenever possible, make room for your child to just be a kid. When so much of family life revolves around symptoms, appointments, and treatments, it can be easy for an illness to become the center of everyone’s attention. Finding opportunities for play, connection, friendships, and ordinary family routines can help remind children that they’re more than what they’re going through.
And parents need support in this process, too. Watching your child change seemingly overnight is frightening. You’re trying to find answers, manage appointments, advocate at school, and figure out how to respond to behaviors that may be entirely new to your family! Sleep, nutrition, help at school, and support for exhausted parents belong in the plan too.
We don’t have every answer. We can still listen carefully, take the symptoms seriously, and work together on a plan.
A child can need medical treatment and psychological support. A parent can advocate fiercely for answers while also learning how to respond differently at home. These aren’t competing approaches. They’re different pieces of the same puzzle.
Shout out to Alana for adding her wisdom.
https://www.alanakivowitz.com/
