My son’s PANDAS journey began the way that most others have. B was in first grade, and one day he was our silly, mischievous, bright child; the next he was withdrawn, hoarding garbage, and obsessing about taking screenshots of the time on his iPad. (Currently, 15,000+ sit in his iPad photo library that we’re not allowed to delete.) We wrote it off as a combination of genetics – his dad has low-grade OCD – and moving away from his friends. COVID was actually a great distraction for him because he hated his new school and would cry each day about not wanting to go (“school refusal”, we would later learn). It would take almost a year before PANDAS came into our universe, the result of my staying up late dealing with B’s behavior and my father dying of cancer. I was reading posts in an OCD Facebook group and hit the link to ASPIRE, and there was everything that described what B was going through, aside from the fact that he had never had strep. What I did know was that I was a strep carrier. Did I do this to him? B’s wonderful therapist, whom we found at the beginning of his OCD, recommended an LLMD/PANS/PANDAS specialist to us, and, sure enough, he had it. Antibiotics started, along with other protocols, and eventually, a year plus later, our little boy was mostly back, with the OCD at bay.
At the beginning of fourth grade, the recommendation was to get his gigantic tonsils removed. We hoped this would be the answer we needed to fully get rid of PANDAS. He healed well from the surgery and seemed to be doing fine, even expanding his small list of foods to include vegetables! And then came New Year’s and an almost hysterical tantrum about being too full and eating too much. This started the six scariest months of his journey, where we didn’t know if he was going to starve himself to death. B went from 75 pounds to 60 pounds in that short time, limiting his diet so much that his doctors forbade him from any physical activity. Bones stuck out from him that I had never seen on anyone before. I would wake up in the middle of the night to make sure that he was still breathing. Our very social boy didn’t want to be around his friends anymore. I would hear myself apologize to other mothers and hope that they explained to their boys that B was just going through something, and their friend would be back soon. We learned about ARFID, another acronym to add to the long list, as well as other specialists to make sure it really wasn’t anything physical like B claimed. During one breakthrough therapy session, B said that he didn’t want to gain weight because other kids had called him fat. Anorexia is where it went next. B’s medication was changed, and because his massive tonsils were gone, he was more amenable to taking large pills, and he agreed to take more supplements. An SSRI, which my husband and I had both been reluctant about, was also added.
Because B badly wanted food, but his OCD prevented him from eating, he started baking. I have always loved baking and have often dreamed about opening a bakery. Before they could walk, I began baking with my boys. Just being around food, the smells, and the small tastes, became B’s new passion/obsession. Little by little, a taste of batter here, and a chocolate chip there, B started eating. My love of baking and teaching B began to save him. Full meals were still a no-no to his OCD, but lots of batter or pieces of the cakes were somehow okay. His OCD would later try to make him skip a meal, but we knew that with the amount of batter that he was eating, his calories were going up. From anorexia, B moved to binge eating and not being able to control the amount of food or baked goods/batter that he would eat. He would cry that he couldn’t control himself and that his OCD was very angry with him. “Why can’t you help me stop?” he would ask me repeatedly.
Summer camp also became a big motivator for B. He knew that if he didn’t maintain or increase his weight, he would not be allowed to go. Summer camp meant 8 hours away from me, and I could no longer monitor his lunch, which I had done during the school year. The first week was rough with calls or messages of distress that he couldn’t stop himself from eating too much.
With help from a dietician neighbor friend of ours, B and I started going through a workbook to help kids learn how to eat and to deal with body issues. His therapist incorporated the book into their sessions, too. By week 3 of summer camp, B was really improving. Although his diet is back to being foods most would consider “junk,” we’re just happy that he is eating and able to mostly control the amounts. While we were celebrating the wins, the universe tried to take us down with B’s little brother getting strep. Why now? I, of course, was a basket case, but B’s doctor was able to talk me down from the ledge. We just hope this doesn’t send him back into a flare. The start of school and B being around all of the germs is something that I think about every day and dread.
I think, like most parents, I find myself blaming myself that maybe my being a strep carrier or having Group B strep when I was pregnant did this. Who knows? It’s the questions and not knowing that make it the worst, as well as the people with the comments that we may not be doing the right thing for B.
The other thing that I have found so mind-blowing is that once I opened up about B having PANDAS, so many people reached out to tell me that they either have a relative or know someone with a child suffering, too. Why is there a disorder that affects so many people and it now seems like so many people know about it, yet it is not being talked about more in the mainstream?
As we continue to move through our journey, my hope is that one day B’s PANDAS will go into remission or that we have the right tools in place to quickly get over a flare. Until then, B will keep baking.