What Is PANS? Our Family's Journey With Pediatric Acute-Onset Neuropsychiatric Syndrome

What Is PANS? Symptoms, Diagnosis, Treatment & Our Family’s Story

If you found this article by searching for PANS, there’s a decent chance you’re doing what I was doing not very long ago: Googling a collection of symptoms that don’t seem like they should have anything to do with one another.

Maybe your child suddenly developed OCD or intense anxiety. Maybe there are tics, sensory changes, separation anxiety, rage, sleep problems, food restriction, regression, or a child who suddenly cannot function at school the way they could before. Maybe it happened after an illness. Maybe you’ve searched “PANS symptoms,” “PANDAS after strep,” or “why did my child suddenly change?” more times than you can count.

Maybe you’re reading this in the middle of the night. I’ve done plenty of that, too.

Our son Nico’s journey with PANS has been one of the most confusing, heartbreaking, exhausting experiences of my life. It has also changed the way I think about children, behavior, disability, school, inclusion and what it really means to understand another person.

Before I tell you our story, though, I want to say something that I think gets lost very easily when we talk about conditions like PANS: Nico is not a PANS story. He is a kid who happens to have PANS.

There was a whole Nico before we knew that acronym, there is a whole Nico underneath the hardest days of this illness, and there will be a whole Nico long after someone closes this article.

When Something Changed

Nico was, for the most part, a neurotypical kid. He had ADHD, but it was manageable. He did well in school and sports, and had so many friends. He was happy and easy going, and nothing ever seemed to bother him. But beginning in the winter of 2024, we started seeing things that didn’t fit neatly into what we already knew about him.

Tics appeared.

Then, after COVID hit our family the following winter, there was a sudden escalation in anxiety and obsessive-compulsive symptoms. Then in January 2026, he had strep and then the flu, and things became even more complicated - fast. Overnight, our world was turned upside down.

He refused school. He slept 16 hours a day. He suddenly said he hated things that he loved. He wrote letters saying he hated it here and wanted a new family. He would have physical meltdowns if we tried to go somewhere, where he'd hold on to table legs and his body would be tense and shaking.

At one point he was even experiencing visual distortions—something terrifying to hear your child describe. Thankfully, a course of steroids seemed to make them disappear.

There were enough pieces by then that I knew we weren’t looking at a simple change in ADHD symptoms, a difficult school year, or a kid going through a phase. Something had shifted, and the child I knew so well suddenly seemed to be fighting his own brain and body to do things that had once been available to him.

That distinction became incredibly important to me: Nico had not suddenly stopped caring. Things had suddenly become harder to access.

Eventually, we found a framework that helped explain what we were seeing: PANS.

What Is PANS?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome.

PANS is characterized by the sudden onset of obsessive-compulsive disorder (OCD) or severely restricted eating along with the abrupt appearance of additional neuropsychiatric symptoms.

Those additional symptoms can include anxiety, irritability or aggression, mood changes, developmental regression, deterioration in school performance, sensory or motor changes, sleep disturbances, frequent urination and bedwetting.

Children with PANS may also experience motor or vocal tics, hyperactivity, inattention and other significant behavioral changes.

One of the defining characteristics is how suddenly symptoms appear.

Rather than developing gradually over months or years, symptoms can become severe within days. PANS can also follow an episodic course, meaning symptoms may improve significantly and later return or worsen.

That is the clinical explanation.

But there is another side of PANS that is much harder to capture in diagnostic criteria.

It is what it feels like to look at your child and think:

What is happening?

What Are the Symptoms of PANS in Children?

Every child’s experience is different, and a list on the internet cannot diagnose PANS.

But according to the National Institute of Mental Health, symptoms associated with PANS and PANDAS can include:

• sudden, severe OCD symptoms

• severely restricted or changed eating

• motor or vocal tics

• anxiety, including separation anxiety

• irritability, aggression or major behavioral changes

• sudden mood changes

• developmental regression or loss of previously acquired abilities

• decline in school performance

• changes in handwriting or other motor skills

• sensory changes

• hyperactivity, inattention or fidgeting

• difficulty sleeping

• frequent urination or sudden bedwetting

For a PANS diagnosis, the defining presentation includes the sudden onset of OCD or severely restricted food intake together with the sudden onset of at least two additional categories of neuropsychiatric symptoms, after other medical explanations have been considered.

And this is important:

PANS does not simply mean a child has anxiety, ADHD, OCD, behavioral difficulties or tics.

Many children experience those things and do not have PANS.

The abrupt and dramatic change is an important part of the clinical picture.

What Is the Difference Between PANS and PANDAS?

This was one of the first things I had to learn because you will frequently see PANS and PANDAS discussed together.

They are related, but they are not interchangeable.

PANS is the broader clinical syndrome.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and describes a presentation associated specifically with a strep infection.

In simple terms:

PANDAS involves an association with strep. PANS does not require strep.

Other infections, immune-system factors and environmental triggers have been investigated in PANS, but researchers still do not know its exact cause.

That uncertainty can be incredibly frustrating when you're the parent looking for answers.

You want someone to hand you a test and say:

Here. This is what happened. This is why. And this is exactly what we do next.

PANS isn't always that simple.

What PANS Symptoms Looked Like in Our Real Life

One of the strange things about reading PANS symptom lists is that they can make everything sound very tidy. Anxiety. OCD. Irritability. Sensory changes. School decline. Sleep disturbance.

In a real child, those categories collide with ordinary life.

Anxiety isn't a bullet point when your child is supposed to walk through the doors of his elementary school.

Executive-function difficulty isn't an abstract concept when everyone is waiting for him to put on his shoes, get on the bus, start the assignment, or transition to the next activity.

Sensory overwhelm doesn't happen in a quiet medical office. It happens on a loud bus, in a cafeteria, in a classroom, during an activity, or in the middle of a family trying to get through an ordinary day.

And emotional dysregulation affects more than the child experiencing it. There are parents trying to help, siblings with their own feelings and needs, teachers responsible for an entire classroom, and a child who still has to live with everyone after the hardest moment has passed.

Understanding why something is happening doesn't mean pretending difficult behavior doesn't affect other people. Compassion and accountability can exist in the same family and the same classroom. What changed for me was understanding that we could not respond effectively to what we were seeing if we fundamentally misunderstood what was driving it.

Searching for Answers

If you know me, you probably know exactly what happened once I realized my child needed more help: I became relentless.

I researched constantly. I made timelines and lists. I read studies and parent experiences. I found doctors, asked questions, tracked symptoms, explored treatments and showed up to appointments prepared to squeeze as much information as possible out of every minute we had. I joined communities of parents who understood vocabulary I had barely known existed months earlier.

I planned. I prayed. I advocated. I second-guessed myself. Then I researched some more.

There were plenty of nights when my phone was lighting up the room long after everyone else was asleep because I was convinced that somewhere, buried in the next paper or the next search result, there might be a missing piece.

There is a particular kind of desperation that comes from looking at your child and knowing with absolute certainty that he is still in there, while watching him struggle to access parts of himself.

I would have moved mountains if someone could have told me which mountain needed moving.

So I started moving all of them.

What Treatment and Recovery Have Looked Like for Us

This is also where I want to be careful about separating our experience from advice for someone else’s child.

There is no single PANS treatment plan that I could responsibly hand another parent and say, “Do this.” Nico has been treated by medical professionals, and his care has evolved as his symptoms, history and responses have evolved.

We have pursued treatment aimed at possible infections and inflammatory processes. We have used psychiatric medications and other supports. There have been antibiotics, antivirals, steroids and many conversations about what to try next. At different points we have explored additional possible contributors because when your child’s presentation is complicated, the search for answers tends to become complicated too.

Some of the most striking moments in our journey have been the periods of improvement.

In August 2026, Nico received IV steroids and IV antibiotics. The change we saw afterward was rapid. His tics decreased. He successfully returned to school. Within days, we were looking at a child who seemed so much more comfortable and happy that it was impossible for us not to notice.

There you are.

I wish I could tell you that was the end of the story.

It wasn't.

There were difficult days again. School stress could overwhelm him. A substitute teacher or unexpected change could turn what looked like a manageable day into an impossible one. There were mornings when getting him into school required an extraordinary amount from everyone involved, followed by days when he did beautifully.

That inconsistency can be one of the most confusing parts for people watching from the outside. If a child can do something sometimes, it's tempting to assume he should be able to do it all the time.

But human brains don't work that way, and struggling brains certainly don't.

Our experience with PANS has taught me to stop thinking of ability as a simple on/off trait. Sometimes Nico knows exactly what to do and desperately wants to do it, but accessing the planning, regulation, flexibility or sense of safety required to actually do it is another matter entirely.

That idea eventually became one of the foundations of the Brain House metaphor I use in my books.

The Part of PANS No Medical Definition Prepared Me For

As hard as the medical uncertainty has been, there is another part of this experience that has broken my heart in a completely different way.

Other people can only see what is happening on the outside.

They don't see the hours of research the night before. They don't know what his nervous system feels like inside his body. They don't know which things were effortless six months ago or how badly he may want to be able to do them now.

They see a child who isn't starting his work.

A child who won't get on the bus.

A child who becomes overwhelmed.

A child who needs an accommodation another student doesn't receive.

A child who handled something yesterday and cannot seem to handle it today.

And children, especially, interpret what they see using whatever framework we've given them.

Sometimes that means a struggling child gets called lazy.

Or weird.

Or accused of faking it.

Those words hurt in a completely different way when you know how hard your child is fighting.

And this is where our family's PANS journey stopped being only about PANS for me.

I Could Advocate for Almost Everything Except Understanding

I could research doctors. I could pursue treatment. I could ask for accommodations and school supports. I could sit in meetings and explain what was happening. I could request evaluations, talk to teachers and advocate for adults to look beneath the behavior they were seeing.

What I couldn't do was stand beside Nico every second of every day and explain him to every child who encountered something they didn't understand.

More importantly, he shouldn't need me to.

That realization started bothering me in a way I couldn't shake.

We work incredibly hard to create access for neurodivergent students. Schools develop IEPs and 504 plans. Teachers differentiate instruction. Children receive sensory supports, breaks, specialized services and accommodations.

All of that matters enormously.

But then we put those children into classrooms alongside neurotypical peers and rarely give the rest of the children any meaningful language for understanding why brains can work differently.

So what are they supposed to think when one child gets to leave the room?

What do they think when someone wears headphones, needs extra time, struggles with something that seems easy, communicates differently, becomes overwhelmed or receives support they don't receive?

Children notice differences whether adults explain them or not.

And when we leave an information vacuum, they fill it themselves.

And eventually I couldn't stop asking myself:

How can neurodivergent children truly belong alongside their neurotypical peers if we never teach those peers what neurodiversity is?

That question changed everything. That is where I started thinking seriously about neurodiversity literacy.

How Our PANS Journey Became More Than What You See

One day, somewhere in the middle of all of this, an idea came to me.

And then I couldn't stop writing.

Seriously.

For days.

One thought became another.

One page became another.

And suddenly I realized:

I was writing a children's book.

Not a medical book about PANS.

Not a book asking children to memorize diagnoses.

And not a book asking anyone to feel sorry for kids whose brains work differently.

I was writing the book I wished the children around my son already had.

A book that could explain that brains work as teams.

That different brains experience the same world differently.

That sometimes the skills we know someone has can become harder to access.

That accommodations aren't advantages.

That fair doesn't always mean identical.

That behavior can tell us something without telling us everything.

And that understanding another person's brain doesn't mean excusing every behavior or abandoning our own boundaries.

It means seeing the whole person.

That book became:

More Than What You See.

And somewhere along the way, I realized the idea was bigger than one book.

Why I'm Advocating for Neurodiversity Literacy in Schools

We spend enormous amounts of time figuring out how to accommodate neurodivergent children in schools.

And we should.

But accommodations address only one side of inclusion.

A neurodivergent child can have every accommodation written into a plan and still walk into a classroom filled with children who don't understand why they need them.

Access gets you into the room.

Understanding helps you belong there.

That is why More Than What You See has become more than the title of a book.

It's becoming a Neurodiversity Literacy Initiative.

I want children to grow up understanding that brains can think, communicate, learn, regulate, participate and experience the world differently.

I want them to understand that different isn't less.

That support isn't cheating.

That someone else's accommodation doesn't take something away from them.

That intelligence doesn't always look the same.

That we can hold people accountable while still being curious about what happened underneath a behavior.

And that another child should not have to disclose a diagnosis or become the classroom lesson before their peers learn that different brains exist.

Neurodivergent children should not carry the responsibility of teaching everyone around them how to understand them.

We can teach children first.

Turning Something Painful Into Something Bigger

I would give anything for Nico not to have needed to walk this road.

There is no inspirational spin I can put on watching your child struggle that makes the struggle itself somehow worth it.

But I can't change that this happened.

I can decide what I do with everything it has taught me.

So I'm taking the research.

The sleepless nights.

The appointments.

The school meetings.

The heartbreak.

The advocacy.

The hope.

And every ounce of fight I've carried for my child.

And I'm turning it outward.

For Nico.

For the kids who have been called weird.

For the kids who have been called lazy.

For the kids whose intelligence has been underestimated.

For the kids whose struggle was interpreted as behavior before anyone wondered what was happening underneath.

And for the children growing up alongside them.

Because understanding can be taught.

And different brains deserve to be understood.

PANS: Frequently Asked Questions

What does PANS stand for?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It describes a clinical presentation involving the abrupt onset of OCD or severely restricted food intake together with other acute neuropsychiatric symptoms.

What are common PANS symptoms in children?

In addition to the defining sudden onset of OCD or severe food restriction, associated symptoms can include anxiety, emotional changes or depression, irritability or aggression, developmental regression, deterioration in school performance, sensory or motor changes, sleep disturbances and urinary symptoms. Not every child experiences every symptom, and severity can vary significantly.

What is the difference between PANS and PANDAS?

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and describes cases associated with Group A strep. PANS is a broader clinical syndrome and does not require a streptococcal trigger.

Can PANS happen without strep?

Yes. A child does not need to have a strep infection to meet criteria for PANS. PANDAS is the term specifically associated with Group A streptococcal infection.

Is there a test for PANS?

There is currently no single blood test, brain scan or other laboratory test that independently confirms PANS. Diagnosis is clinical and involves evaluating the pattern and onset of symptoms while considering and ruling out other explanations.

What causes PANS?

The exact mechanisms underlying PANS are still being investigated. Infections, immune and inflammatory processes and other potential contributors are areas of ongoing research. Not every child has an identifiable trigger, which is why it's important not to treat one family's suspected trigger as an explanation for every case.

Does PANS cause tics?

Motor or sensory abnormalities can occur in children with PANS, and some children experience tics. However, tics alone are not the defining feature of PANS; the diagnostic presentation centers on abrupt OCD and/or severely restricted food intake along with other acute symptoms.

Can PANS affect school?

It absolutely can. Depending on the child's symptoms, PANS may affect concentration, executive functioning, handwriting or other motor tasks, sensory tolerance, emotional regulation, attendance, transitions, separation from caregivers and the ability to complete schoolwork. The specific impact varies by child.

For our family, school has been one of the places where the gap between what Nico knows and what he can consistently access during difficult periods has been most visible.

How is PANS treated?

Treatment depends on the individual child and their clinical picture. Care may involve addressing identified infections or other medical contributors, psychiatric and behavioral symptoms, inflammatory or immune concerns when