When my family first moved to the small town we now call home in Monmouth County, we felt like we were building the life we had always dreamed of with our young daughter, Seramina.
We loved establishing new traditions and watching it grow and evolve. It felt like there was always something to look forward to.
Our daughter thrived academically. She was curious, social and deeply passionate about nature. She loved singing and wanted to try everything at least once. She had an enthusiasm for the world that made the people around her smile.
There was no reason to worry. We were just excited about our future.
When she was six years old, she started pulling on her clothes and complaining about how things felt on her skin. The behavior became distressing, but our pediatrician reassured me that it was normal and would pass. His trust was a relief for me.
But it didn’t happen.
Sensory issues got worse. The socks have become unbearable. More and more clothes were thrown out. We even had to abandon the dance because the tights were impossible for him to wear. Then came mood swings that didn’t seem at all characteristic to me. But the pediatrician still maintained that everything would be fine and told us to “wait and see.”
When the school called to tell me they were seeing signs of OCD and anxiety, my stomach dropped. Something was seriously wrong.
The assurances of our doctors, once comforting, are now frustrating. Soon after, the decline accelerated.
One morning, the school called because Seramina was in distress and had spent most of the day in the guidance office. I started picking her up early almost every day. Less than a week later, school refusal sets in.
My daughter, fiercely independent, suddenly couldn’t leave me. She begged to stay home, away from the school she once loved. Sensory issues, obsessive worries, and intrusive thoughts consumed his daily life.
Then one night she woke up screaming for help.
The symptoms she had been experiencing during a slow burn suddenly exploded in intensity. His eyes were different, dark. She seemed trapped in a constant state of fear and distress. She called for help but couldn’t explain what was wrong.
She had always been able to express exactly what she was thinking and feeling, but now all she could say was, “Help me.” Again and again.
She was no longer herself.
Watching my daughter suffer when no one could tell me why was a kind of pain I didn’t know existed. It was devastating.
For weeks, I called after call to pediatricians, therapists, and specialists, looking for answers. Every conversation felt like a dead end. No one could explain what was happening or offer meaningful advice. More than once I was referred to psychiatrists or advised to call 911.
The breakthrough came from my sister.
She was telling friends what was happening and one of them urged her to tell us about something called PANS/PANDAS.
PANS, or acute-onset pediatric neuropsychiatric syndrome, is a neuroimmune disease in which the immune system becomes dysregulated, causing inflammation of the brain and a sudden and dramatic change in behavior and functioning. On the surface, this may seem psychiatric. The underlying cause, however, is of immune origin.
When I started reading about PANS/PANDAS, everything was fine. The symptoms. The sudden appearance. Gravity. It was like the first explanation that actually matched what I was seeing.
I took it to our pediatrician, who immediately dismissed the idea, calling PANS “too rare” and discouraging us from pursuing the diagnosis.
At this point, we had become painfully aware of the stigma surrounding PANS/PANDAS, a diagnosis that many still consider “controversial.”
Doctors labeled her based on her symptoms rather than asking what could cause such a dramatic change. But I always knew that my daughter’s condition was not psychiatric. Something was seriously wrong medically.
When we finally found an immunologist familiar with the disease, she diagnosed Seramina with PANS. She prescribed an anti-inflammatory medication and told us we should see improvement within four to six weeks. Medications lessened the effect, but the condition did not improve significantly.
We went through specialists and therapies. Several quietly advised me not to say PANS, not because they thought it didn’t exist, but because they recognized that mentioning it might make it harder for my daughter to take her seriously.
When we visited two hospitals consecutively during a crisis, both referred us to a psychiatric pathway. PANS is a clinical diagnosis that they did not recognize. I was told it was time to face up and that I was doing my daughter a disservice by not putting my seven-year-old on a selective serotonin reuptake inhibitor (SSRI).
I left those appointments knowing I had to find another way.
Getting a diagnosis should provide relief and a plan of action. But with PANS, it often introduces another layer of trauma and gaslighting to overcome.
It became clear that no one was going to save us. So, I started asking better questions. I discovered ASPIRE PANS, trained and joined the PANS support communities. What I discovered was deeper than I could have ever imagined.
Asking better questions and refusing to accept a misdiagnosis led me to a research study on brain folate deficiency and its prevalence in children with PANS. The study looked at folate receptor alpha autoantibodies in children with PANS/PANDAS and found them in 63.8 percent of the 47 patients studied.
I had a blood test done and Seramina tested positive for antibodies. Addressing her brain folate deficiency with folinic acid significantly reduced her PANS symptoms, bringing us out of the crisis and closer to a stable baseline.
She started coming back to us in waves.
One day she didn’t wake up crying anymore. Another day, she dressed without hesitation. Then she started asking to resume her activities, one by one. From there, we were able to address the factors contributing to inflammation and better support his overactive immune system. Then one morning she said, “I feel like my brain isn’t hurting anymore.” »
It’s a moment I will never forget.
She was still there. Accessible. There was a reprieve.
This research study was also a major turning point because it led me to a doctor involved in the research, who ultimately helped me understand my daughter in a way that I was desperately seeking. Through her, I learned about MAPS, the Medical Academy for Pediatric Special Needs, and the work being done within this community.
MAPS-affiliated doctors listened. They saw my daughter as more than just a set of symptoms. They understood the patterns I was describing and treated his condition with the medical urgency it warranted. I often think about how different our journey might have been if we had been directed to this destination from the beginning and how much better off we might be today.
My daughter is nine now and I am constantly amazed by her resilience. She can now talk about what she’s going through and told me she wants to help other children with PANS find the support she struggled to access.
We have lost a lot over these years.
Today, we are hopeful as she enters fourth grade. We are once again participating in the things we once loved as a family.
Seramina still has PANS, and we still navigate flares. His health requires continuous attention, and this problem cannot be solved by a single medication or quick fix. For us, its management involves long-term immune support and ongoing efforts to regulate one’s immune system. But now we have the education, resources and support we need to move forward with confidence.
Our story is bigger than us.
There is a more urgent need than just raising awareness among parents. PANS can be deeply isolating. Community is non-negotiable because isolation can cause families to lose hope. I spent a year feeling unnecessarily alone, mistakenly believing we were having a rare experience.
Pediatricians and pediatric therapists are often the first point of contact when something changes in a child. There is a need for greater awareness and education in pediatrics that leads to clear and concrete direction. Families should be able to say “PANS” when a child changes dramatically and that conversation sparks curiosity, recognition, and a willingness to look deeper.
Gn Health
