My 6-Year-Old Couldn’t Bear Clothes on Her Skin—Then Her Eyes Went Dark - Newsweek

When my family first moved to the small town we now call home in Monmouth County, it felt like we were building the life we had always wanted with our young daughter, Seramina.

We were enjoying establishing new traditions and watching her 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 to sing and wanted to try everything at least once. She had an enthusiasm for the world that made people around her smile.

There was no reason to worry. We were simply excited about our future.

When she was six, she began tugging at her clothing and complaining about how things felt on her skin. The behavior became distressing, but our pediatrician reassured me it was normal and would pass. Her confidence was a relief to me.

The sensory issues worsened. Socks became unbearable. More and more clothing was rejected. We even had to give up dance because tights were impossible for her to wear. Then came mood swings that felt completely out of character. But still, the pediatrician maintained that everything would be fine and told us to "wait and see."

When the school called to say they were seeing signs of OCD and anxiety, my stomach dropped. Something was very wrong.

Our doctors' reassurance, which had once felt comforting, now felt frustrating. Soon after, the decline accelerated.

One morning, the school called because Seramina was distressed and had spent most of the day in the guidance office. I began picking her up early almost every day. Less than a week later, school refusal set in.

My fiercely independent daughter suddenly couldn't leave my side. She begged to stay home from the school she once loved. Sensory issues, obsessive worries, and intrusive thoughts consumed her daily life.

Then one night, she woke up screaming for help.

The symptoms she had been showing in a slow burn suddenly exploded in intensity. Her eyes looked different, dark. She seemed trapped in a constant state of fear and distress. She cried for help but couldn't explain what was wrong.

She had always been able to articulate exactly what she was thinking and feeling, but now all she could say was, "Help me." Over and over.

Watching my daughter suffer while no one could tell me why was a kind of pain I never knew existed. It was devastating.

For weeks, I made call after call to pediatricians, therapists, and specialists, searching for answers. Every conversation felt like a dead end. No one could explain what was happening or offer meaningful guidance. More than once, I was referred to psychiatrists or advised to call 911.

The breakthrough came through my sister.

She was telling friends about what was happening, and one of them urged her to tell us about something called PANS/PANDAS.

PANS, or Pediatric Acute-Onset Neuropsychiatric Syndrome, is a neuroimmune condition in which the immune system becomes dysregulated, causing inflammation in the brain and a sudden, dramatic change in behavior and functioning. On the surface, it can appear psychiatric. The underlying cause, however, is immune-related.

When I began reading about PANS/PANDAS, everything fit. The symptoms. The sudden onset. The severity. It felt like the first explanation that actually matched what I was seeing.

I brought it to our pediatrician, who immediately dismissed the idea, calling PANS "too rare" and discouraging us from pursuing the diagnosis.

By this point, we had become painfully aware of the stigma surrounding PANS/PANDAS, a diagnosis many still consider "controversial."

Doctors labeled her based on her symptoms rather than asking what could be causing such a dramatic change. But I always knew my daughter's condition was not psychiatric. Something was medically very wrong.

When we finally found an immunologist familiar with the condition, she diagnosed Seramina with PANS. She prescribed an anti-inflammatory medication and told us we should see improvement within four to six weeks. The medication took the edge off, but she didn't improve significantly.

We cycled through specialists and therapies. Several quietly advised me, "Don't say PANS," not because they believed it didn't exist, but because they acknowledged that mentioning it could make it harder for my daughter to be taken seriously.

When we visited two hospitals back-to-back during a crisis, both directed us down a psychiatric route. PANS is a clinical diagnosis that they did not recognize. I was told it was time to cope and that I was doing my daughter a disservice by not starting my seven-year-old on a selective serotonin reuptake inhibitor (SSRI).

I left those appointments knowing I needed to find another way.

Securing a diagnosis should bring relief and a course of action. But with PANS, it often introduces another layer of trauma and gaslighting to overcome.

It became clear that no one was coming to save us. So, I started asking better questions. I discovered ASPIRE PANS, educated myself, and joined PANS support communities. What I found ran deeper than I ever could have imagined.

Asking better questions and refusing to accept a misdiagnosis led me to a research study on cerebral folate deficiency and its prevalence in children with PANS. The study examined folate receptor alpha autoantibodies in children with PANS/PANDAS and found them in 63.8 percent of the 47 patients studied.

I had the blood test done, and Seramina tested positive for the antibodies. Addressing her cerebral folate deficiency with folinic acid significantly reduced her PANS symptoms, pulling us out of crisis and bringing her closer to a stable baseline.

She started coming back to us in waves.

One day she no longer woke up crying. Another day she put on clothes without hesitation. Then she began asking to return to her activities, one-by-one. From there, we were able to address the factors contributing to inflammation and better support her overactive immune system. Then one morning, she said, "It feels like my brain isn't bad anymore."

She was still there. Reachable. There was a reprieve.

That 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 I had desperately been searching for. Through her, I learned about MAPS, the Medical Academy of Pediatric Special Needs, and the work being done within that community.

The MAPS-affiliated doctors listened. They saw my daughter as more than a collection of symptoms. They understood the patterns I was describing and treated her condition with the medical urgency it warranted. I often think about how different our journey might have been if we had been directed there from the start 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 experiences and has told me she wants to help other children with PANS find the support she struggled to access.

Today, we are hopeful as she enters fourth grade. We're participating again in the things we once loved as a family.

Seramina still has PANS, and we still navigate flares. Her health requires ongoing attention, and this is not a condition solved by a single medication or quick fix. For us, managing it involves long-term immune support and ongoing efforts to regulate her immune system. But we now have the education, resources, and support to move forward with confidence.

There is a more pressing need than parental awareness alone. PANS can be deeply isolating. Community is non-negotiable because isolation can cause families to lose hope. I spent a year feeling needlessly alone, wrongly 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 needs to be greater awareness and education within pediatrics that lead to clear, actionable direction. Families should be able to say "PANS" when a child changes dramatically and have that conversation met with curiosity, recognition, and a willingness to look deeper.