When Overnight Everything Changed: A Parent’s Perspective on PANS/PANDAS
By: A Mom Who Wants to Help Others
I woke up one January morning, not realizing that a simple virus was about to turn our family’s world upside down. My son had a high fever for several days, and we were told it was just a virus, nothing out of the ordinary. We did what most parents do: waited it out, expecting life to return to normal.
Ten days later, everything was different.
Before I explain, let me tell you a little about my child. He has always been sweet, kind, and full of life. He’s bright, hardworking, and loved by his teachers. He has a close-knit group of friends, loves being active outside, and is happiest when playing sports.
But suddenly, he wasn’t the same child. He began having meltdowns over homework, refusing to go to practices, sobbing that he just couldn’t do it. At first, we thought it was school stress or a phase. But then he started telling us he couldn’t sleep, that he was having scary thoughts. He kept saying that he wished he were “different” and that he was afraid he might hurt himself.
That was the moment everything shifted for our family.
In a matter of weeks, our once-happy, confident child was unable to sleep, go to school, or even leave our property. The rage, panic, and terrifying thoughts grew stronger. We spent days just trying to keep him safe. He cried and begged us to help him, saying he wanted his life back.
We went to multiple emergency rooms, only to be told our only option was psychiatric hospitalization hours away. He was just a child, yet we were left with no answers. In the middle of sleepless nights, I searched online, desperate to understand. That’s when I stumbled upon another parent’s story of a child who changed overnight after being sick. Their child had PANS. Reading those words, I felt it in my gut: this was what had happened to my son.
PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. It is marked by the sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two other cognitive, behavioral, or neurological changes.
A related condition, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), occurs when these symptoms are specifically triggered by strep infections. In both PANS and PANDAS, the immune system misfires after an infection or other trigger, leading to brain inflammation and sudden, dramatic changes in a child’s thoughts, behaviors, and functioning.
While restrictive eating wasn’t my son’s primary symptom, I quickly learned that for many families, it is the first and most terrifying sign. 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 1 in 4 children with PANS/PANDAS develop restrictive eating as part of their illness.
For many kids, this illness first shows up in their eating. Overnight, they stop eating foods they’ve always loved, sometimes because of a fear of choking or vomiting, sometimes because food suddenly tastes or feels wrong. In fact, many children are first diagnosed with an eating disorder like ARFID before anyone realizes PANS or PANDAS is the underlying cause. The difference is that in PANS/PANDAS, the eating change often appears abruptly after an illness; one week, a child is eating normally, the next, they refuse food entirely.
This overlap matters. Families may be referred to eating disorder programs that focus only on nutrition rehabilitation, while the root cause, neuroinflammation, goes untreated. Both supports are important, but without addressing the medical piece, many children can’t fully heal.
The good news is that when a child is properly diagnosed and treated, healing is possible. My son has now had multiple rounds of IVIG, high-dose steroids, and antibiotics. We had to fight insurance every step of the way, because some insurers still call IVIG “experimental,” even though research and countless families show otherwise. But slowly, we have seen our child return. He is back at school, back with his friends, and back to playing sports.
My son tells me he’s “built different,” because most kids his age could never endure what he has been through. And he’s right, he has shown more strength than many adults I know. But it breaks my heart that any child has to fight this hard just to be themselves again.
I share our story because I don’t want another family to go through this. You might be reading this because your child suddenly stopped eating and developed a range of symptoms that no one can explain. You are not alone. There may be a medical reason this is happening, and with the proper evaluation and treatment, your child can get better.
If you want more information about PANS or PANDAS, the following resources are a great start:
- ASPIRE: https://aspire.care
- Pandas Physicians Network: https://www.pandasppn.org