It’s one thing to read PANS Diagnostic Criteria and something else to experience this disorder in real time. Part of raising awareness around PANS/PANDAS, for me, is helping people to understand what it can “look like” and feel like when it’s happening in your child or someone you know. 

For us, and especially at home, Isaac’s inexplicable rage was the symptom that eclipsed all others. But there were others, and there were problems at school, too. 

Ironically, the first requirement of PANS diagnostic criteria was challenging for us to identify: “Abrupt, acute onset of Obsessive Compulsive Disorder or severely restricted food intake.” But that piece of the puzzle became clearer in hindsight, as I will highlight in a future post. 

The second requirement, “similarly acute onset and severity from at least 2 of the following categories …,” was undeniable. Isaac had all of them. Every. Single. One.   

Anxiety; Emotional Lability and/or Depression; Irritability, Aggression, and/or Severe Oppositional Behaviors; Behavioral (Developmental) Regression; Sudden Deterioration in School Performance; Motor or Sensory Abnormalities; Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency. 

An Onslaught of Psychiatric Symptoms

I often say, we could easily have gotten formal diagnoses of Anxiety, Depression, and Oppositional Defiant Disorder. The others: developmental regression, poor school performance, sensory issues, somatic and sleep issues, we could (and did) assign to his rare genetic disorder. (See A Rare Diagnosis.) But all together, these symptoms began to reveal a very different picture of what we’d been living with for seven years. 

Let me tell you, friends, this comprehensive level of neuropsychiatric disturbance in a four, five, six, seven, eight, nine, ten, eleven year old, completely takes over your life. PANS/PANDAS is a living hell for kids who suffer and for their entire families. Some days, I’m still amazed we made it through the fire.

Important to note: the presentation of PANS/PANDAS can look vastly different from child to child. I’m offering glimpses of what it looks like in Isaac to help readers imagine how diagnostic terms play out in actual children and the level of disruption and desperation this disorder causes for kids and their families.

Anxiety

We all have a general idea of what anxiety is, but in children, it can look a little different from what we might expect, as this brief article on childhood anxiety explains. Here’s a snapshot of what it was/is like for Isaac, at school and at home.

At the time of onset, age four, Isaac was a student at The Parish School, a private school in Houston for kids with language-based learning differences. When he began to devolve in the weeks and months after The Big Sick, he would often spend up to two hours of a four-hour day in a space they called the “hidey hole,” not participating in class at all. And he struggled on the playground, too, screaming at teachers that his classmates were throwing rocks at him, which wasn’t happening. (At this point, they had to watch his every move and interaction and actually noted that Isaac was tossing gravel toward his peers.) 

Isaac’s anxiety was truly debilitating and had an immediate detrimental impact on his social interactions and school performance. After his first year of preschool at Parish, he was not being invited back. The school counselor told me they had never seen a child with his level of intensity. Due to heroic efforts on the part of the school working together with our family, Isaac did ultimately stay at Parish for another 2.5 years. (A story for another post.)

Fast forward a few years to a teacher passing out papers during class when Isaac was seven, a mundane, everyday thing. But when Isaac’s teacher put a sheet of paper in front of him and moved on to the next student (rather than staying right by his side to help him through the exercise), he got up and “cleared the bookshelves,” sweeping all of the notebooks to the floor in a rage. I’m identifying the primary issue here as anxiety, but with psychiatric symptoms, it’s not always clear where one begins and the other ends.

At home, Isaac struggled to put on his shoes and socks independently for years, long after he had the motor skills to do it. He anticipated it was going to be hard—anxiety due to an explosive combination of sensory issues, fine motor challenges, and OCD—and would start down a well-worn neural pathway of screaming, rage, kicking, throwing his shoes, and throwing/breaking/threatening to break his glasses. Not just every once in a while, but daily. Thanks be to God (and I’m not saying that lightly), we finally broke that pattern last year, when Isaac was 15. Still today, I find myself holding my breath at that point in his morning routine. 

Also still today, on most walks through a parking lot, Isaac is totally cool, strolling into a storefront like any teenage boy. But occasionally, he becomes his younger, tortured self, on high alert, running or screaming when he hears the low roar of a car engine, afraid that distant sound indicates a clear and present danger. 

I often say that Isaac is like two different kids in one body. But now, when there’s an issue with his socks and shoes, or he’s overcome with fear in a parking lot, we know something is amiss in his immune system. It truly is a paradigm shift. 

Anxiety and PANS

We didn’t know until Isaac was eleven years old that his extreme anxiety was a symptom of PANS. If you know a child who suffers from extreme anxiety and other psychiatric symptoms—especially with sudden onset, and especially with OCD—please ask whether it might be tied to an infectious trigger. Proper diagnosis and treatment are essential and can change a child’s life. 

After almost five years of treatment, Isaac is in a much better place. This summer, I felt confident enough to say we were past it, that Isaac had beaten PANS. And while I still hope for that level of healing, I have to be honest about the challenges we face. As a fellow mom said recently, she’s come to terms with PANDAS being an autoimmune condition and something her daughter may always have to manage. 

Continued challenges

Isaac was doing amazing this summer, but he’s had a setback after a bout with Covid in August. As is his typical pattern, he got through the illness and appeared to be totally fine … until we were heading out the door for a family outing about three weeks later. It was time to put on his shoes, and instead of just doing it (per his new, healthy pattern), he began screaming, cursing, threatening to break his glasses. And we knew exactly what was happening. 

This is what a PANS flare looks like at our house. Isaac on edge, easily triggered, in a sudden and prolonged state of fight or flight. And it impacts all of us. It is devastating every time we’re back in that space. But we are in a much better position now. We have some measures we can put in place as soon as we see symptoms appear. Acute onset, acute treatment. 

Isaac will never again suffer for months and years without recognition that his brain is inflamed and there is a medical explanation for his behavior. But there’s no true silver bullet either. For now, I’d say he’s back to about 80-90% of where he was this summer, our new baseline. But our goal is, and will always be, 100%. 

For his part, Isaac is learning to manage his symptoms better and to understand what it means to have a PANS flare. We have all learned along the way that we will get through it together. But friends, this is no easy path.