The Dread Comes Back Before the School Year Does

Source: Mikhail Nilov / Pexels

Every August, some parents watch the school year approach with dread. Their children are not truant or defiant. They have a medical condition that makes a school building unbearable, and most people around them, including many clinicians, do not know it exists. This letter is for those parents, and for anyone who has wondered why such a family cannot get their child through the door.

What is actually happening to these children

A number of conditions share one feature: The immune system stays activated, inflammation circulates, and some of it reaches the brain. The most recognized of these are PANDAS and PANS, both of which are post-infectious neuropsychiatric conditions. Autoimmune encephalitis, different autoimmune conditions, Long COVID, and ME/CFS can all also trigger neuropsychiatric symptoms.

When inflammation settles in the brain regions that scan for danger, a child loses the ability to sort a real threat from a harmless one. A hallway, a cafeteria, a locker door—the body responds to each as it would to an emergency, and the result looks like school refusal. A child cannot move past the front door, cannot get into the car, or cannot get out of it, and spends whatever energy is left getting home to collapse.

Over years of clinical work with neuroimmune families, I have come to describe this pattern as Neuroimmune Reactive Avoidance (NRA) (Gertel Kraybill, 2025): a descriptive label for a set of clinical observations. It involves a biological lockdown, sudden in some children and gradual in others, in which ordinary tasks meet extreme survival-driven resistance alongside physical symptoms.

I use the term because the alternatives do not capture what this is. When behavior driven by neuroinflammation is filed under anxiety or oppositionality, treatment goes in the wrong direction, and parents are held responsible. Naming it says something biological is happening, and that it deserves investigation rather than correction.

While everyone else gets ready with supply lists, class placements, and group chats, some of that excitement is real and some performance, but either way it is not where we are. We are doing a different arithmetic: How many weeks since the last flare. Whether this protocol holds into September. What we will say when the attendance office calls, and calls again in November.

It is a strange loneliness, being on a different calendar from everyone at the bus stop.

To you who were told it was you

To you who were told this was anxiety, a phase, screen time, the divorce, or your own worry, transmitted to a sensitive child.

To you who were handed a parenting book by someone who had spent 11 minutes with your family, and called enmeshed, overinvolved, a mother who reads too much.

To you who were reported, or threatened with a report, for pursuing a diagnosis, and who watched your child written up as oppositional, knowing with a certainty no one would accept that this was inflammation and not character —

You were not overinvested. You were reading your own child accurately while being told you could not.

A few things we can do now

Enroll if we can manage it, even for one hour a day, or starting with lunch. Taking on part of a structure is better than none. Let the school know that, as with any chronic medical condition, we are focused on the child's best interest, and for now this is enough.

Make sure we have a medical team that will back us up when truancy questions come up.

PANDAS Essential Reads

My Children Recovered From Mental Illness—Then I Did, Too

Is Your Child's Behavior Actually a Sign of Neuroinflammation?

Decide what happens on a bad morning before we are standing in one. If there are two adults, have that conversation while everyone is calm, and write down the words we will use.

Try not to tell our kids how the year will go. We do not know. Children with these conditions hear a prediction as a promise, and a broken promise costs more than not knowing did.

The only message that matters: "You are not alone in this. We are in this together, and we will figure it out together."

Our own worry

This is harder to say, and I want to say it carefully, because it is easy to hear as blame and is not meant that way:

Our children can feel what we want. A child scanning for danger with the volume all the way up picks up on the adults in the room, and our hopes register in their body as pressure. Not because we are doing anything wrong, but because that is what an inflamed threat system does.

The same mechanism works in our favor. A child in a neuroinflammatory state often cannot come down without borrowing regulation from an adult, and we are the one in the room. That borrowing is real treatment, and it comes out of our bodies. We are doing the best we can, and holding this awareness sometimes helps us respond instead of react.

What this is costing us

To you who stay steady through a rage you did not cause and cannot stop, then close the bathroom door and shake.

To you who sleep on the floor beside a bed, or do not sleep, and who count out pills, drive to infusions, and watch treatment make your child sicker on the way to better.

To you who absorb the denials, file the appeals, and explain the same illness at a 504 meeting for the third year running.

To you who left the job, or lost it, or shrank it to part-time, because someone had to be home —

We grieve the child who ran out the door in the mornings, the invitations that stopped coming, the sibling who learned to be the easy one. We do it while making breakfast, because it never gets an hour of its own.

When getting through it is the goal

Some years the objective narrows all the way down: Not progress, not attendance, just weathering a painful stretch without depleting our kids or ourselves past recovery.

To all of you carrying these complexities into another September: You do not need me to tell you that you are strong. You need someone to tell you that these decisions are hard, that "good enough parents" make many mistakes, and that the mistakes were always part of the definition rather than a failure. What matters is that we repair afterward. Not one of those decisions or mistakes is the reason your child got sick.

You are good enough. And your child is good enough. That is not something to take for granted.

Wishing us all a year of progress, support, laughter, and hope.