If your child came to mind while reading that, you are in exactly the right place. Kimberley Clayton Blaine, MA, LMFT works with families like yours through teletherapy, parent coaching, and online courses. Her books on understanding emotionally complex children are available at TheMisunderstoodChild.com. When you are ready, begin support here.

A DEEPER LOOK FROM A SPECIALIST

Kimberley Clayton Blaine, MA, LMFT  ·  Licensed Clinical Family Psychotherapist  ·  Laguna Niguel, California

Why PANS and PANDAS Get Missed and What That Costs Families
 

If your child has been sickly, has had repeated strep infections in the preschool years, or seems to get sick far more often than other children, that history matters clinically and it needs to be part of any conversation about sudden behavioral or emotional changes. Children with ADHD often have lower immune function and get sick frequently, which makes this picture even more complex. When OCD-like behaviors begin to emerge in a child who already has an ADHD diagnosis, families and clinicians alike may attribute everything to the existing diagnosis and miss what is actually a separate medical process happening underneath. PANS and PANDAS are frequently overlooked because the behavioral changes they produce look like psychiatric conditions rather than immune responses. The delay in identifying the medical component means children sometimes spend months or even years in behavioral or psychiatric treatment for something that has a physiological driver requiring medical intervention alongside everything else.
 

What to Do When You Suspect PANS or PANDAS and Keep Getting Dismissed
 

The first step is to consult with a pediatric autoimmune specialist or immunologist who can order the appropriate bloodwork. There are specific markers in the blood that point toward these conditions, and a standard pediatric checkup will not catch them. Lyme disease, COVID, influenza, and even a common cold or upper respiratory infection can trigger a PANS response because the body's immune system turns on itself and the brain becomes affected in the process. I have seen it in my practice repeatedly: a child develops mild congestion and within days the family is managing behavioral changes that are completely out of proportion to a typical illness. If your pediatrician tells you it is just anxiety or behavioral and your instinct tells you something is different, trust that instinct and ask specifically for a referral to a specialist who works with pediatric autoimmune conditions. A targeted course of antibiotics often produces meaningful improvement in symptoms, which is itself important diagnostic information. Always working from the inside out, addressing the medical piece first and thoroughly, is how we make sure nothing is missed.
 

What the Road to Support Looks Like After a Diagnosis
 

Once PANS or PANDAS is identified, the treatment team needs to span both medical and therapeutic disciplines. A pediatric autoimmune physician manages the medical side. A therapist familiar with the condition supports the child and family through what can be a prolonged and unpredictable recovery process. The school also needs to be brought in as a partner, because this condition can affect a child's functioning for weeks or even months while medical treatment takes effect. Collaborating with the school to establish appropriate accommodations and a flexible academic plan during the treatment period is essential, not optional. Children navigating a PANS or PANDAS episode are genuinely unwell in ways that are not always visible, and the school environment needs to reflect that reality. Because research in this area is still developing, parents often find themselves educating the adults around their
child about what this condition is and what it requires. That advocacy role is real and demanding, and families should not have to carry it alone.