Finally back in school and feeling better!

 

After you read this story, imagine what it is like for all those children who are not diagnosed correctly. You can paint a pretty bleak picture in your mind pretty quickly. This is why a correct diagnosis is so critical. You can’t begin to access the appropriate treatments without an accurate diagnosis. We hope all the professionals who have worked with Caitlin over the years can now identify PANS in other kids so they can get better more quickly. Keep sharing your story. Keep spreading awareness.

 

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My name is Caitlin. I am 13 years old.

My journey started when I was in 5th grade. My anxiety started to become worse and worse each day. Soon enough, I started to develop intrusive thoughts. I struggled to get to school and stay in class. It was a fight with my mom every morning before school just to get me there on time. I would sit in class, not feeling myself. Nothing felt right. A few weeks later, I was admitted to the psych hospital. I was there for 10 days. I was sent home, they adjusted my medications, and I went back to school but I knew I wasn’t better.

About a week later the psychiatrist told my mom that I had to go back to the psych hospital since I wrote a letter in school all about my intrusive thoughts and how I was feeling. My mom brought me to a psychiatric emergency program. I was stuck there for 6 days waiting for a bed. While I was there, I witnessed a traumatic event. A girl sitting at my table had a seizure. Which was incredibly scary for me. I still have PTSD from that day. Finally, I got a bed in a different psych hospital where I was there for 3 weeks. During that time, my mom was doing research and realized that I probably had PANS/PANDAS. I was able to finish out 5th grade on a modified schedule.

That summer my mom brought me to an integrative medicine doctor. After taking 22 tubes of blood from me, I was officially diagnosed with PANS/PANDAS based on symptoms and my high strep levels. I started 6th where I was back to going to school full time but I was still dealing with anxiety and intrusive thoughts. I got COVID on December 31st and after that, everything got worse, my anxiety, OCD, and intrusive thoughts. This made it very difficult to get to school so I needed the year of home instruction. I also dropped out of gymnastics that year. I was treated for Long-Covid which was diagnosed by a different integrative medicine doctor. We were also working with a PANDAS-friendly psychiatrist and started homeopathy. I also got tested for mycotoxins and those numbers came back really high. I was also doing therapy for my school anxiety and intrusive thoughts.

I started 7th grade in the fall like every other kid. Also, during the fall my parents had the house tested and found hidden mold. Even though I wasn’t feeling well in the mornings I still pushed myself. I had a new social worker that year too. Throughout 7th grade, I started to feel better and felt less sick in the morning. I went on medicines for the mold and my parents got the mold out of the house. I also started gymnastics again.

Then, in June 2023 I finished my first full year of school since 4th grade. Now I’m in 8th grade, going to school full time and staying in class. (Most of the time!!) I also completed my first full year of gymnastics. Since I’m doing so much better I’m coming off of most of my medicines. I was on antibiotics for 2 years. Homeopathy is also helping. My mycotoxin levels are coming down but I am still taking medicine for that.

I’m feeling so much better and happier thanks to being diagnosed correctly and getting the right medical and therapeutic treatments. It’s been 3 years since I experienced my first PANS/PANDAS symptoms which led me to being admitted to the psych hospital. I’m thankful for my family, social workers, and therapist. I don’t where I would be today without them.