Finding PANS PANDAS Treatment as an Adult

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


	amber adult pans pandas story aspire 2

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.

	amber adult pans pandas story aspireUnfortunately, 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.

12 comments to Finding PANS PANDAS Treatment as an Adult

  1. Lisi gheewalla
    March 26, 2021

    Amazing story. You and your father. His persistence. Your willingness to trust him – truly inspiring. Thank you for sharing!

  2. Deni
    April 16, 2021

    I wish you a full recovery as soon as possible. I have been battling to have a Cunningham panel done for my son and it was never prescribed. Could you please help me with a dr name that can do that for us. My son is 5 and his first symptoms started before turning 2. He has had his ups and downs but never went back to normal. Please help.

  3. BEVERLY R Poitras
    May 16, 2021


    I’m so pleased to hear you are on the road to recovery of this horrible illness.

    Sharing your story may offer courage and save lives.

    My son is 34 no stranger to lyme specialist.

    we also had a cunningham panel done, IVIG helps but at this time we are without a PANS/PANDAS
    provider we are really desperate

    he has had 6 psychiatric admissions …worse for treatment….
    the issue we have at hand is lack of providers in RI to help him
    getting thru the quarantine for covid has been difficult to avoid triggers of flare up

    I have pleaded with RI dept of health to reach out to other states.
    I’ve been offering information of NEPANS

    each relapse gets more severe with medications that do not support the antibiotic therapy

    I’ve met Gabrielle at a conference in Ma an spoke of our need then as well.

    Please offer us any direction that may offer a chance for recovery.

    living on hope in RI
    Beverly Poitras
    774 930 5177

  4. Ana
    May 20, 2021

    My son had his worst flare at 9. No pediatrician would test him. Therapist thought he was dangerous after he pulled my arm hard wanting to leave her office. He then flew into an episode and wanted to open car door while I was driving. I didn’t know what to do as a single mom with no one at home to help me…I drove to the ER where they continued to repeatedly ask him if he was a danger to himself or others. I had to educate them which did no good. They made us go to their stress center with a police escort for my then calmer terrified child. What was the stress center’s advice. Part-time group counseling with other kids during day. Righhht…I’m going to leave a kid that takes on every symptom he hears with kids with behavioral issues while he endured massive separation anxiety??!! I couldn’t even shower without him sitting by the bathroom door so how was this going to help. I called all kinds of facilities…no help. We have a doc now years later in hinsdale, Illinois. One week before his 13th birthday (after 6 mos fighting with insurance company), he will get his first IVIG treatment. Praying for healing for you and my kiddo. Vented a lot but I can relate to your story. I had Scarlett fever and looking back think I had/have it too.

  5. Lynn
    May 26, 2021

    Amazing story, I know the struggle is very real because I am also an adult who has PANDAS. My Cunnigham Panel came back with elevated and borderline levels. I thought that taking my test result to the best hospital in my area would lead to the road of my recovery and I would get IVIG treatment but I was wrong. Instead, they diagnosed me with a psychiatric dissociative seizure disorder and acted like PANDAS wasn’t real. It was a very humiliating experience. Currently, I am still searching for a doctor who offers Telehealth visits and who will review my case.

  6. Brenda B. Weis
    May 31, 2021

    Latest treatment for flares for PANDAS in 22 year-old male. Brilliant young man with Asperger’s, who was forced to withdraw from college 2 years ago. Had had numerous IVIG infusions, was summarily dismissed from a midwest OCD facility after college withdrawal because he was so sick that he could not measure up to the 70% compliance they required of their group members. Recommendations re: genetic testing for immunity-related antoantibodies, genes, etc. Has had basal ganglia encephalitis. Thank you.

  7. Marie Mikowski
    June 2, 2021

    I am a 27 year old woman with 10 years of Post EBV PANS and seek a specialist to assist with treatment. I have reached out to many specialists who deal w pediatrics but unwilling to assist. My Family Practitioner is motivated to help but has not met a specialist for adults.

    Can you help? The fatigue, depression, anxiety and cognitive slowing have held me back but I have goals I seek to achieve and would be grateful for any understanding and help. Thanks for all you do every day in spreading education about PANS.


  8. Catherine Onyemauchechukwu Ugochukwu
    January 13, 2024

    I\\\\\\\\\\\\\\\’m so happy that someone can relate with me..I\\\\\\\\\\\\\\\’m from West Africa(Nigeria) and we have no doctor for that here and they have not heard of it,and can\\\\\\\\\\\\\\\’t even diagnose me,the antibiotics they gave me with injections were for observation because they believe its all in my head or I\\\\\\\\\\\\\\\’m crazy.My family and friends thinks its spiritual but I\\\\\\\\\\\\\\\’m going through a lot with the tics,depression,hallucination,seizures,OCD,unable to talk or walk properly,paralysis,and lost of memory.I really need help because I almost jumped out of the car the last time and they all feel am crazy but I\\\\\\\\\\\\\\\’m not


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