Supporting Kids with PANDAS and Autoimmune Encephalitis
Personal Perspective: A letter from a mother to her son.
Posted September 1, 2025 | Reviewed by Kaja Perina
Last week marked the start of school. Social media is filled with images of children holding signs and flashing smiles. They seem hopeful, excited, and ready.
But that is not the story for all of us.
As I drove away, dropping off my son, my heart ached.
I thought of you, my dear son, pale, anxious , yet determined, and I kept repeating to myself with tears:
"How incredibly courageous you are."
After everything you have endured, you still find the strength to try again.
I will not share more details, that part belongs to you, and one day, you may choose to tell it yourself.
But I write this letter in recognition of you, your brother, and all the children navigating life with PANDAS , PANS, or autoimmune encephalitis (AE).
Living in an Unpredictable Battleground
Unlike other conditions that follow predictable patterns, PANDAS/AE/NRA is unpredictable. There's no universal protocol that fits every scenario, no roadmap that guarantees the same outcome. It's like living on a battlefield, never knowing where the next attack will come from, which symptoms will flare, which triggers will strike, which treatments will help or hurt on any given day.
You wake up each morning not knowing if today will be a good day or if your brain and body will turn against you without warning.
To You Whose Lives Changed Overnight
This letter is for you, PANDAS/AE kids who woke up one day and suddenly everything felt off.
Your bodies didn't feel like your own.
Your thoughts raced or slowed to a crawl.
Fears appeared from nowhere.
Tics and rituals took control.
The world no longer felt safe.
To those who once learned easily but now find school loud, chaotic, and exhausting.
To you who once ran and played freely but now feel trapped inside your homes or your own minds.
To those who are misunderstood by teachers, therapists, peers, even family and doctors, and have to carry the crushing weight of being misjudged when you are trying to survive.
To those who are bullied because your brains and bodies reacted in ways you cannot control.
To You Who Are Fighting These Unpredictable Battles
To you who long to join your friends, sports teams, and classrooms but not yet feel ready, spend your days in clinics and hospital waiting rooms, in bed, or feeling trapped in fear cycles and thoughts.
To you who are on medication regimens that seem endless, taking sometimes more than 20 pills a day to function.
To you who get infusions several days every month, feeling sick from both the treatment and the constant needle pricks, PICC or Central Line, and it seems like these meds are first making you feel sicker to get better.
To you whose condition became so severe you could no longer recognize yourselves, who needed hospitalization, and were misdiagnosed and mistreated as "mentally ill".
To you who experienced hallucinations and lived in terror, you couldn't control the overwhelming fear, you whispered to desperate parents that you didn't want to live anymore. Parents who held on to you with everything they have, fighting to keep you alive and safe at all costs.
To you who needed comprehensive recovery and reintegration plans for school, social life , and sometimes even the most basic daily activities.
To all of you beloved children who lost so much time, friendships, experiences, hopes, and dreams .
To you who endured unimaginable pain, lost your sense of control, and watched your self-image and relationship with your body became distorted.
I see you. You are not broken. You are not lazy. You are not dramatic. You are not "too much."
You are a child ( teen /young adult) with a neuroimmune condition that is real and serious and still too often misunderstood or ignored by the world around you. A condition that, as far as we know now, does not follow the rules, that refuses to be tamed by standard protocols, that keeps you and your families guessing at every turn.
You are exactly right as you are, with all of these symptoms. You are deeply loved, even in the overwhelming moments when we all feel lost.
Your courage in facing each day is extraordinary.
Your fight to reclaim your life is courageous.
Your journey toward healing, however long, is valid and worthwhile.
You matter. Your struggle matters. And your story deserves to be heard, believed, and honored.
This article is part of the Bringwise Psychology Journal — daily insights on human behavior, mental health, and personal growth.