My goal in the future is to take what I have learned about PANDAS and to help spread awareness about the disorder so that others can better navigate their own experiences with children who have PANDAS.
Being a sibling in a family with PANS PANDAS is never easy and often incredibly frustrating. The future will be a better place with siblings like this who will grow up to be incredible advocates and ambassadors to the PANS PANDAS community. We are so thankful that this young man has shared his experience with such openness and compassion.
Living with a PANDAS kid is not easy. It is a constant rollercoaster of mood swings and explosive reactions, mixed with pockets of time when my brother, Ben, is funny, quirky, and able to demonstrate his intelligence. When Ben has his low times, or “flares,” access to my parents becomes limited because their attention is focused on managing his behaviors, which often involves battling with him. There is often very little desire to be around my brother because he screams at me to get away without reason. I think he doesn’t want me to be in the room with him because he wants the attention of an only child. He wants my mother’s full focus and availability. More often than not, I am just a nuisance to him. Ben and I have had moments where we have bonded, but those times are very rare. Despite this, I try to take these opportunities to create the best memories possible so that we can reminisce about them when he is in a better headspace and more willing to engage with me in a positive way.
I hold onto the memories of times that Ben and I have been able to have a more typical brotherly relationship. We recently had a snow day and went outside to play in the snow. I was even able to get him to build a snowman, who we named Ben, even though I wanted to name it Greg. Compromising on the name was worth it for me since what mattered most was making sure that this stayed positive and did not turn into a power struggle. He really can’t handle it when I disagree with him. Another memorable time Ben and I had was last year, prior to the pandemic, when we took a trip to Mexico. Ben had a stuffed animal named Greenie. Because of Ben’s reluctance to leave the resort, he was going to miss many of the beautiful sights in Mexico. So, I decided to get creative with Greenie. Using Snapchat, I was able to photoshop Greenie into these places that Ben would have liked to have seen but could not go without being miserable. Ben gets really uncomfortable if he is hot and he is often too anxious to leave home. In the case of our trip, there were too many unknown, new things. I was able to let Ben see the sights with my photoshopped pictures, and the way his face would light up with each Greenie picture felt more and more rewarding. For those moments in time, I felt a special bond forming between us.
The happy times with Ben are the ones that I’ve been able to hold onto through the darker times of Ben’s PANDAS. I’d like to believe that PANDAS does not define him, but it isn’t always easy. There have definitely been some incidents that I’d rather forget. On one trip to Maine, Ben screamed the entire car ride. I broke down and needed to get out of the car and away from him because the ringing in my ears just would not stop. It was so mind-boggling to me how someone could just continue to scream endlessly, despite the car ride being completely silent with no apparent triggers present. We had no idea why his reactions were so magnified and long-lasting. Before the PANDAS diagnosis, we had no idea that the real reason he was screaming was that his body’s inflammation was causing him to act out. It was incredibly frustrating for everyone involved, especially Ben. He could not find a way with words to tell us what he was feeling. I knew that I had to do more research to become better educated about how I could understand Ben’s PANDAS better and so that I could approach his behavior in a different way.
When it comes to understanding Ben and his behavior, my mother is someone who I idolize. She handles all his problems and in one day exhibits more patience than I could in a lifetime. I’ve learned a lot from her, and I know that even though she’s not invincible, she’s still a PANDAS superhero in my eyes. I appreciate all of the time and effort and all the stress she has taken off our shoulders and placed on her own just so Ben can feel better, safer, and secure. My goal in the future is to take what I have learned about PANDAS and to help spread awareness about the disorder so that others can better navigate their own experiences with children who have PANDAS.