Katy’s PANDAS Journey
Katy began experiencing PANDAS symptoms when she was 7 years old. Thanks to a school nurse, she was referred to a specialist who was able to get her the treatment she needed to start down the path to recovery. Today she is a recent high school graduate on the way to a bright future starting college in the fall. Read Katy’s PANDAS story below, as told in her own words (slightly edited for clarity).
My story begins when I was seven years old. The summer before second grade, I began experiencing many health issues. It began with frequent stomach aches and episodes of nausea, which started early in the summer. We didn’t know until much later that strep bacteria can manifest this way and NOT as the throat pain typically insinuated with strep. At the time my family thought it was just a typical “stomach bug” that many young children contract at one time or another. As the summer progressed, I began developing intense anxiety and OCD. Like a lot of people with PANDAS, I can pinpoint the exact day my whole life seemed to change.
Struggling With OCD and Anxiety
One morning, on a family vacation, I woke up with an unfamiliar feeling of panic and fear. I just remember feeling like there was a dark cloud of gloom over my head at all times, with this evil voice in the back of my head telling me everything was going to go wrong. The first instance of this OCD and anxiety that I can remember was food related. When I woke up one morning on vacation, it appeared as though I had developed both a fear of choking and a fear of having an allergic reaction overnight (quite literally). Just one day before, I was carefree and happy, and the next day only worries occupied my mind. My family stood by confused as I simply refused to eat several of the foods I had once loved. I developed OCD thought patterns that convinced me something bad would happen if I ate these foods, whether that was choking or going into anaphylactic shock.
This vacation was the first time I really knew something was off. I didn’t feel like myself in the slightest, and it felt like my brain had control over me. Family members told me over and over that these thoughts were irrational, and simply not going to happen in real life. Yet I just couldn’t convince myself of it—my brain kept playing the “what if” scenarios on repeat. During this same vacation, I had my first panic attack after I ate something and convinced myself that I was having an allergic reaction. I remember feeling so scared and confused while my mom sat with me and tried to calm me. Toward the end of this vacation, I even began to develop separation anxiety, specifically with my mom. Since she felt like the only person that could make me feel better when I was scared, I refused to be away from her for long periods of time.
Difficulty at School
As I began second grade, my anxiety and OCD got progressively worse. Choking remained a big fear. At lunchtime when I would go to the cafeteria with my friends, I would just anxiously sit there and be too scared to eat. Along with this, an intense fear of vomiting arose. My constant stomach aches and nausea were still present, which made my fear of throwing up even stronger as it was always in the back of my mind. Unlike my second-grade friends, I hated school and began to spend the majority of my days sitting in the counselor’s office or the nurse’s office. I vividly remember sitting in my bed one morning and telling my mom that I didn’t want to live anymore because I was in a constant state of fear—something heartbreaking and terrifying for a mother to hear from her seven-year-old daughter.
During this time, I was diagnosed with generalized anxiety by my doctor. I began taking Prozac and saw a therapist, but nothing seemed to improve. In fact, my symptoms worsened. As winter came, I was missing out on a lot of in-class lessons and socialization since I could not pull myself together long enough to stay in the classroom. My separation anxiety was the highest it had ever been. Many days I sat screaming and crying in the counselor’s office saying I “wanted my mommy” until she would eventually have to come pick me up. Spring came, and my mom worked out something with the school that allowed her to sit in my classroom—the only thing that could keep me in there at the time. Looking back, I think a typical second grader would find it embarrassing or weird to have a parent observing their class. However, my mind was so disconnected at the time that none of that mattered to me in the slightest. All I cared about was that I felt safe when my mom was in the room with me.
Springtime came, and so did a very important day in my road to a diagnosis. I remember being at school one day and feeling more nauseous than normal. It was after school, and my parents were in another room having a meeting with my teacher, the nurse, principal, counselor and some other specialists. I remember running into the room and getting sick right into the trash can in front of everyone. I’m not sure why my immediate reaction was to run into the room, but looking back, I’m happy I did. The nurse, who was in the room, told my parents to get me tested immediately that day for strep.
Getting a Strep Test and PANDAS Diagnosis
We went to the doctor’s office and I remember having lots of blood taken. I sat there still slightly nauseous and yet very confused. How could I have strep if my throat didn’t hurt even a little bit? I remember that the doctors were hesitant to take my blood, and my parents had to firmly demand it. Later that same night, my mom got the call that my blood levels for strep were extremely high. Instead of having the typical strep symptoms like a sore throat, it was manifesting in my stomach, which made it much more difficult to diagnose. The high blood levels suggested that the strep infection had been in my system for a long time. To this day, I am still incredibly grateful for my school nurse who thought outside the box and pushed for me to go get tested.
Shortly after this, my dad began researching connections between strep and OCD/anxiety and, miraculously, he came across PANDAS. My family immediately got me in to see a specialist, who created a treatment plan for me and started me on a stronger, long-lasting dose of antibiotics. I started feeling like my old self again pretty quickly. By third grade, I was able to attend class without my mom needing to be present. Outside of school, I was finally able to reconnect with those friends who I was too anxious to have playdates with before. While there were definitely still bad days, I finally felt like I was more in control of myself again and that there was hope for the future. Each year of elementary school got better and better, and I felt very good entering sixth grade.
Getting a Treatment Plan and Looking to the Future
I had occasional relapses and periods of heightened anxiety, panic and OCD throughout middle school and into the beginning of high school, but none were as bad as that time in second grade. I feel very grateful that we discovered I had PANDAS fairly early and therefore knew how to work with it. My specialist also helped create a plan for me when I needed it most so I could quickly get back on my feet.
Looking back, I know that as hard as it was, my PANDAS experience made me stronger and allowed me to show myself how resilient I am. I have accomplished so much in my high school career, and I can’t wait to see what the future holds at college in the fall. I wish I could go back and tell my second-grade self that everything is going to be okay, and that I would go on to have an impressive and exciting four years of high school, as well as be accepted into a great college. I can’t tell my past self these things, but for anyone who is currently in the midst of their battle with PANDAS/PANS, I want you to know that it truly will all be okay. You too will one day look back and be so impressed with how strong you were even in the middle of your storm.