My hope is to raise awareness and be an example for future PANDAS/PANS patients!
I am officially an Amber fangirl, so I was excited when she agreed to share part of her PANS PANDAS journey with us at ASPIRE! She went misdiagnosed for so many years, but she and her family never gave up, and now she is doing so much better. They really are an inspirational team. Finding a proper diagnosis and treatment at any age should not be this hard! Amber says, “my hope is to raise awareness and be an example for future PANDAS/PANS patients,” and she is succeeding at this. I can’t wait to follow her on her journey of healing. – Gabriella True
My PANDAS journey begins at the age of 10. Despite unrelated surgeries, hospitalization for pneumonia, and several streptococcal infections, I was a healthy and happy child growing up. However, when I was 10, everything took a turn for the worse. I woke up one morning unable to swallow, including water and my own saliva. Each year after that, I began experiencing more symptoms, including food restriction, separation anxiety, a decline in school functioning, OCD, trichotillomania, anorexia, depression, insomnia, anger/rage, hallucinations, profanity, nudity, tics, and seizures in that exact order. After years of seeing specialists and given different psychological diagnoses such as Bipolar Disorder, Dissociative Identity Disorder, and Schizophrenia. My parents knew this wasn’t the case. They saw me every day and knew there was something deeper going on.
It wasn’t until I was 20 that I was diagnosed with PANDAS. My biggest struggle with fighting this disorder was and still is finding care as an adult. My dad heard of PANS/PANDAS online but couldn’t get me into any of the specialized hospitals or clinics because they only accepted pediatric patients. Desperate for answers, my dad took me to a random immunologist who had no idea what PANDAS was and begged him to order the Cunningham Panel test. It came back with 4 out of 5 biomarkers elevated. After more testing and imaging, I was officially diagnosed with PANDAS. Receiving the diagnosis was fairly easy. It was finding help that was the issue. We saw another non-specialist ENT who had heard of strep causing neuropsychiatric symptoms who luckily agreed to take out my tonsils because of how often I was getting strep and the condition my tonsils were in. After the tonsillectomy, we knew I needed to start treatment. My dad probably contacted every PANS/PANDAS specialist and clinic in the country. Only one was willing to make an exception to their pediatric rule for me. The clinic told us they would assign an adult neurologist as part of their expansion plans to include adult patients. After months of waiting, I saw the adult neurologist who was in contact with the main PANS/PANDAS clinic within the main hospital. She decided to treat me with antibiotics, steroids, IVIG, and plasmapheresis.
I received IVIG in September of 2019. In late October, I got an ear infection which is my worst trigger for a flare. I went two weeks without eating, one of those without sleep. I was constantly crying and panicking. I couldn’t be away from my dad even when he went to the bathroom. He had to sleep in the same room as me. My OCD would make me disinfect the house over and over and have rage attacks when things got “contaminated” in my mind. I couldn’t hug my own parents. I stopped leaving the house and later, I stopped leaving the blue couch in my living room. I experienced scary hallucinations and delusions. I was frantic. I couldn’t speak properly or walk without falling. I just kept screaming and crying. I pushed away my dad because I couldn’t recognize him. I did not know where I was and claimed people were partying in my house. I later had a seizure and went unconscious. My dad knew not to take me to a regular emergency room, so we drove four hours to the hospital I was seeing the adult neurologist and receiving IVIG at. We arrived at the emergency department at 1am. This is the hospital I was being treated at. They were supposed to know me best. They were supposed to understand PANDAS.
Unfortunately, that did not happen. The staff in the emergency room ruled me as a psychiatric patient and threatened to admit me inpatient. I was here because my brain was so inflamed, not because of a mental illness. Oftentimes, PANS/PANDAS patients are labeled as psychiatric patients and receive improper care. It is even more challenging as a young adult because there is no adult to speak for you. Doctors assume it’s all in your head because tests are so specific. Because of this, I have been admitted to psychiatric wards against my will and treatment centers more than I would have liked. The emergency room psychiatrist and doctor were pressuring me to go inpatient and didn’t take any of my neurological symptoms seriously. The entire time I was in the hospital, they didn’t even give me saline despite being dehydrated. They refused to treat me until I agreed to go inpatient. Instead, a drug panel was done with my blood test without my knowledge.
My dad and I decided to leave the emergency room at 5am after receiving no help. That car ride back home was the worst four hours of my life. I experienced uncontrollable rage and even tried throwing myself out of the car on the highway. I was so frustrated. I felt so misunderstood, helpless, and alone.
People with PANS/PANDAS and people who love them do not have access to proper treatment during flares. It is challenging enough to have such limited options as a pediatric patient, but it is heartbreaking that patients over 18 do not have the same access to providers and treatment.
I now have a PANDAS specialist who I adore. He respects all of my symptoms and knows how to treat my flares. I underwent plasmapheresis in August 2020 and consider myself in partial remission.
I document my journey on my health Instagram (@MyInflamedBrain). I have met some of my best friends who support and understand me through that account. My hope is to raise awareness and be an example for future PANDAS/PANS patients. I feel as if I am one of the few adults paving the path for future adult patients and I wouldn’t want to have it any other way. I am proud of my journey. It made me the person I am today. I still have a while until recovery, but my progress is enough to motivate me to keep pushing.