When your child declines rapidly and no one believes you—trusting your instincts can save the day.
Countless calls to pediatricians and child psychologists led nowhere. No one believed her symptoms were real, and many offered only psychiatric solutions. Meanwhile this family watched their child suffer without answers.
Through persistence, support from another parent and continued advocacy, this family finally found a specialist who diagnosed and treated PANS. Treatment and ongoing care have helped her regain her confidence, return to school, and reclaim her joy. She continues to improve every day.
Tick-borne infections can trigger PANS or be co-morbid. It’s essential to understand how to prevent exposure, recognize symptoms, and know when to seek treatment.
Learn more about tick-borne disorders today.
My daughter has been independent since nursery school. She loved school and, by the time she was in 1st grade, was excelling in class. She was involved in three after-school activities and was always up for trying new things.
In February of 2024, we went on a family vacation, and she was sick with a fever for a couple of days. When we arrived back home, she seemed to have recovered from the acute illness, but then she started worrying a lot and struggled to wear pants and socks. When I brought this concern up to her pediatrician, she assured me this was normal and would resolve itself. A week later, my daughter, who never had issues at school, was now at the nurse’s daily, tugging at her pants and suffering from extreme anxiety.
When she started screaming at night and suffering from intrusive thoughts, I called the pediatrician again and told him I suspected my daughter was suffering from something my sister had heard of called PANDAS. The pediatrician responded right away, ‘NO.’ she said, “that is very rare. She is not having tics, so it’s not PANS/PANDAS.”
In another week, she could no longer attend school at all and could tolerate no more clothing than a nightgown. She would scream and beg for help, but didn’t know how or why. She had separation anxiety and wouldn’t let us leave the house. And she could not leave the house for 4 months either. By this point, I was researching PANDAS daily. I was sure she had this, and I need someone to help us. It was horrifying watching her decline with no answers, and it was unreal how difficult it was to find a doctor who could help or guide us. Countless calls to pediatricians and child psychologists in the area all either denied that PANS/PANDAS existed or just offered a psychiatric medication regimen for her symptoms. Even CHOP does not recognize PANS/PANDAS, and ghosted us after I insisted that she had PANS.
A local mother of a son who had PANS, whom I am incredibly grateful for, reached out to us after hearing our struggles through my daughter’s school. Her support and guidance were huge in getting me through the toughest times, and we finally found a specialist who diagnosed her PANS.
The specialist put her on an anti-inflammatory medication and sent us on our way. Things stopped getting worse, but they weren’t getting better. When I asked if we should be concerned about Lyme disease, we were told NO, and her PANS would take time, but eventually resolve.
When that didn’t happen, we found an LLMD and discovered she did, in fact, have Lyme. It became very clear there was no one coming for us. When it comes to PANS/PANDAS, there is no team of doctors and nurses swooping in to tell you, “We are here to help, your daughter is in good hands.”
If I wanted her to recover, I would have to continue doing my own research and trust my instincts on everything. It was incredibly traumatic watching my child suffer and navigating a medical system that is so hell bent on writing my daughter off as a psych case and me as a hysterical parent of a child she couldn’t control.
This syndrome, due to its severity, is traumatizing and will take you to the brink, but you can’t give in to the gaslighting and misdiagnoses.
Check for mold or Lyme disease, clean your diet, reduce inflammation in every way possible, and clean your gut. My daughter continues to improve, and we do everything we possibly can to heal her. We are rebuilding her confidence, and she is back in school and participating in activities again. The light is back in her eyes, which had been missing for almost half a year. Her positive attitude is strong, and she wants to help other kids who are going through this, so we share our story in hopes of doing just that.
I am grateful that I didn’t listen to her doctors when they discouraged the pursuit of this diagnosis. It haunts me to think where she would be if we had not acted as quickly as we did.
Timing is crucial, and pediatricians are our first point of contact; they need to do better. But until then, we need to spread awareness and advocate for our kids. I want other parents to know that there is hope and their child can recover.
- Return to Personal & Family PANS PANDAS Stories
- Share Your Own Story
Gabriella True
