My Story

HI! My name is Bennett, and I was 11 years old when I was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) in 2020. I remember going to multiple different doctors, therapists, and psychologists throughout my life. I continued to get worse and nothing was helping. I had a long list of diagnoses, most of which turned out to be wrong. My life just seemed to keep getting worse and worse. I went to multiple psychiatric hospitals, therapeutic schools, and treatment centers. Nothing seemed to be getting better. I felt hopeless and angry, but my mom knew there was something else going on. She continued to research and she heard about PANDAS. My mom explained it to me and I had a lot of similarities with other patients. I was still very confused, how could I have some PANDAS symptoms sometimes but other symptoms other times. After my mom told me she thought I had PANDAS, it was hard to believe, hard to understand, and after so many years of being told I had so many different things, I was still skeptical. During a hard patch in my life a PANDAS doctor gave me a steroid to take. After 3 days on the steroid my life completely changed. The inflammation in my brain went down and I felt like a new person. We finally had the correct diagnoses, however just because you're diagnosed doesn’t mean everything will automatically get better. There has been lots of ups and downs since being diagnosed. There will be ups and downs for everyone who is diagnosed and my goal is to help everyone with PANDAS. When someone with PANDAS gets sick, it can trigger a flare in their immune system, leading to a wide range of symptoms. Some examples of symptoms are OCD, anxiety, loss of fine motor skills, sleep problems, tics, depression, aggression, learning difficulties and more. Symptoms vary from person to person and vary from flare to flare. That’s one of the reasons diagnosis can be difficult. Through this project, I hope to provide awareness, resources, and support to other patients and families. Living with PANDAS is incredibly hard, and I want you to know you’re not alone.