The importance of feeling validated and finding community


After being at a play date where a mother informed me that her brother was a neurologist and we should look into PANDAS, I had no idea where to start. I did know that psych meds were not working and our daughter was getting more sick. My husband and I watched “My Kid is Not Crazy,” after crying and coming to the realization that both of us felt that same gut instinct that is what in fact what our daughter was going through. After a therapist told us she had a patient five years prior that was identical to our daughter’s case, we followed with that patient’s medical plan to NJ to get a diagnosis; after six months of antibiotic and antiviral treatment.

In 2021, the most severe symptoms were presentable. She had every symptom on the criteria checklist except loss of motor skills. Her triggers included mycoplasma, pneumococcal, and Coxsackievirus. Our daughter was autoimmune deficient in igG subcategories. Our daughter has been getting IVIG and Rituximab, with steroids for a year and the plan is to continue with that regimen for another six months. So we are still on our recovery journey after still having flares that have involved severe rage and tics.

Unfortunately, the majority of our daughter’s childhood has been consumed by PANS. One time I felt strong during this journey, was after finding our neurologist who was local and didn’t dismiss us but validated and comforted my husband and me. We broke down in tears.

We are new to the PANS PANDAS community, we engage in support groups and meet with other parents to help us through our journeys together. We try to educate doctors, teachers, colleagues, friends and family. I really enjoyed the ASPIRE Action Week for Awareness Day. I felt connected and learned a lot. ASPIRE has been a great resource for our family. During this process, we have found ourselves isolated and alone, but with the support of the PANS PANDAS community, I find comfort.

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