When Everything Changes Overnight: A Parent’s Journey Through PANS/PANDAS
By Breanne Failor, ANAD Community Member
As a parent, you learn quickly that the only constant is change. But no one can prepare you for the sudden, life-altering shifts that can happen overnight when your child has PANS or PANDAS.
When the Child You Know Disappears
I remember as a first-time mom, just when I thought I had figured out my son’s sleep schedule or made it through the terrible twos, we’d be on to another stage. Those transitions were expected. But with PANS/PANDAS, the changes are so dramatic that they feel like a nightmare.
A child who was happy and thriving can suddenly become unrecognizable. One day, they are eating normally, excelling at school, and in sports. The next day, they might refuse food, develop sudden obsessive-compulsive behaviors, or spiral into rages that seem to come out of nowhere. Some children stop attending school entirely because of separation anxiety. Others fall into a deep depression, experience terrifying mood swings, suicidal ideation, or even psychosis. Their handwriting can change overnight. They stop sleeping or sleep all day. It is as if your child has vanished before your eyes.
The Desperate Search for Answers
I know this because I lived it. I was up at 2 AM, exhausted and afraid, Googling in desperation to figure out what had happened to my child. By chance, I stumbled across another mom’s blog post that described exactly what I was experiencing.
That post became a lifeline. My hope is that this post does the same for you, that you might recognize your child in my words and feel less alone in the swirl of symptoms that no one seems to know what to do with.
So, what is PANS/PANDAS?
PANS, or Pediatric Acute-Onset Neuropsychiatric Syndrome, is defined by the sudden onset of obsessive-compulsive symptoms or severe eating restrictions, along with at least two other behavioral, cognitive, or neurological changes.
A related condition, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), is triggered specifically by strep. In both cases, the immune system misfires after an infection or other trigger. The result is brain inflammation that can completely alter a child’s thoughts, behaviors, and functioning almost overnight.
When Food Becomes the Enemy
In my son’s case, restrictive eating wasn’t the first symptom. But for many families, it is. Overnight, children stop eating foods they once loved. Sometimes they fear choking or vomiting; other times, food suddenly tastes or feels wrong.
According to ASPIRE, a PANS advocacy group, “Restrictive eating can be a primary symptom. Some children with PANS/PANDAS present with Avoidant Restrictive Food Intake Disorder without OCD or tics. A child with severe food restriction resulting in dramatic weight loss or who refuses fluid intake should be examined for PANS/PANDAS.”
Studies show that about one in four children with PANS/PANDAS develop restrictive eating. And yet, so many are first diagnosed with an eating disorder like ARFID before anyone realizes what’s really going on. The difference is timing: in PANS/PANDAS, the eating issues appear abruptly, often right after an illness.
Families like ours often spend months or years bouncing from doctor to doctor, therapist to therapist, desperate for help. Too often, nothing seems to work, not because our children are broken, but because they aren’t getting the right diagnosis or treatment.
You Are Not Alone
To any parent reading this: please hold on to hope. With the right treatment, you can get your child back. It may not resolve as quickly as it began, but healing is possible.
And if you’re reading this at 2 AM, searching like I once did, let this post be the hand reaching back for you. You don’t have to do this alone.
