First, some very brief background. PANS/PANDAS is an emerging diagnosis. PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, was identified first, in 1998, when Susan Swedo recognized a connection between a cluster of sudden symptoms in kids and recent Strep infections. That diagnosis was expanded in 2010 to PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, with further evidence that the same cluster of symptoms could present after any source of infection or inflammation (not limited to Strep). More broadly, PANS/PANDAS can be understood as a form of Autoimmune Encephalitis (AE), a group of conditions in which the immune system attacks the brain. (For an expansive list of resulting symptoms in PANS/PANDAS, see Signs and Symptoms of PANDAS: A Closer Look.)

What I can tell you as a parent who has been through this living nightmare is that our first thought when Isaac’s symptoms started–intrusive thoughts, rage, and full-scale academic decline–was not, “Could this be the result of an infection or illness?” And it wasn’t any doctor’s or teacher’s line of thought either. We were immediately siloed to behavior/mental health, and that is a problem. Because if we’re not treating the root cause of symptoms (the infection), the child will not get better.

When we see “behavioral” changes in a child or youth, especially sudden changes, we need to consider PANS/PANDAS. This is the essential message we need to spread to doctors, teachers, parents, and communities. Here are a few reasons why:

1. PANS/PANDAS is not rare. An estimated 1 in 200 children and youth are living with PANS/PANDAS, which means there are kids in nearly every school who are suffering from it and likely going undiagnosed and untreated.
2. For too many children, it takes 5+ years to get a proper PANS/PANDAS diagnosis, despite repeated doctor visits and appeals for help. Without diagnosis and treatment, affected children and youth suffer through extreme “behavior problems,” and their families live in chronic crisis and trauma. (This is especially devastating when you learn the condition is medically treatable and that early diagnosis and treatment lead to better outcomes.)
3. PANS/PANDAS can present in anyone. It can develop in a neurotypical child who is a straight A student, and it can happen in a child on the autism spectrum, or with Down syndrome, or with any other pre-existing condition. (And although “pediatric” is in the name, it can also present in adults, particularly young adults.)
4. Living with PANS/PANDAS is isolating for kids and their families. Children and youth with PANS/PANDAS are often ashamed or even traumatized by their symptoms, and families feel like nobody understands the everyday reality of their life. People know what it means when a child is diagnosed with cancer or even autism. We have a collective knowledge about these things. But kids and families living with PANS/PANDAS often feel alone in their struggle, because their teachers, doctors, and friends have little (if any) point of reference for the disorder.
5. Better known disorders get more funding and attention, and PANS/PANDAS needs further support. Several solid nonprofit organizations have emerged along with this diagnosis, and they are doing critical work to help families and support research and legislative initiatives. We need more doctors who are trained and versed in PANS/PANDAS, and more recognition in the general public so that people in every community can help point kids who are suffering and their families to appropriate help.  

PANS/PANDAS is a frightening reality, one the medical community braced against at the outset but has gradually come to acknowledge. I fully believe PANS/PANDAS will be a well-known disorder in a matter of years and that mainstream medicine will develop pathways to treatment that are not currently available. But we are standing on the edge of this threshold, and kids and families who are living with PANS/PANDAS now cannot wait.

The PANS/PANDAS book project I announced last week in partnership with Michigan State University and Front Edge Publishing aims to introduce PANS/PANDAS to as many people as possible, in support of all of the work being done already in the PANS/PANDAS community. I hope you will consider donating to this important work and helping us to spread awareness far and wide. As of this morning, we have raised $6,250 in contributions and pledges, bringing us to 41% of our $15,000 goal. To learn more or to join the effort, please visit https://givebutter.com/PANSbookproject.

Let’s make PANS/PANDAS a household name.