PANS/PANDAS: Our Story

Since September 2022, over twenty-five local families have found their way to the little support group we have organically grown here in Michiana. Our kids are of different ages, races, genders, and certainly in separate places in their battles… but one thing is always true of the new families: the parents are exhausted. They are scared, confused, and overwhelmed by the prospect of PANDAS and what it means to their child and his / her siblings. When they express themselves, big feelings settle in my heart and trigger memories of 2018. It was the HARDEST part of our journey – feeling like, without explanation, my child became a stranger overnight.  Just weeks before, he was my sweet little 7-year-old, and suddenly, he was just snatched out from beneath me. Worse, my pursuit for answers seemed to generate more questions than progress. I was beside myself in fear.

I have learned so much through the process of working with the families in our special community, and every time we welcome a new family, I am stunned by how widely the rest of the parents open their arms to helping them. It’s such a remarkable thing… how all of us fighting this horrible condition together bonds us. In our fear. In our vulnerability. In our tears and our anxiety, we bond. And when one parent shares her story, a sentiment of “me too” washes over the rest of us. We feel seen. We feel the push to keep going. We feel pain, sure. But we also feel hope. The isolation melts away and gives way to encouragement and community. A sense develops that, no matter the fight ahead, there will be answers, coaches, and cheerleaders ready to help us on the way.

Maybe, if you’re at the beginning of your journey and you’re just looking into the possibility of PANS/PANDAS, you’ll see glimpses of your child in my experience. If so, I hope this blog brings you one step closer to diagnosis and treatment. Perhaps you’re in the mud right now, trudging through a diagnosis day by frustrating day, surviving flares and uninformed, unsolicited opinions from educators and extended family. Maybe you’re tiptoeing around your child, trying your best not to trigger them so your other kids can have just ONE night of peace before bed. Perhaps you fear an upcoming tonsillectomy surgery, or the prospect of IVIG, and you’re wondering if you’re with the right doctor and doing the right thing. Wondering if you even have the right diagnosis. Maybe you just wish for one morning when you don’t have that 5 seconds of peace until you remember your reality again, and your stomach develops that familiar pit. Or maybe, hopefully, you’re on the healing side. Things are starting to take shape. You’re seeing glimpses of the child you thought you’d lost. You’re looking back at the MARATHON you walked baby step by baby step and you’re ready to pull the next family over the finish line with you. Wherever you are. Thank you for being here. This is for you, for your family, and for the families that you, too, will help. Thank you, especially, to Legacy Heating and Cooling, and your investment in advocating in our local community for PANS/PANDAS awareness. Your ripple effect has already been more profound than you think. You’re truly leaving a legacy of love and hope for so many families. People you may never meet. Wow…

I’ve always called Brady our “harmony” kid. He is gentle, compassionate, and jovial. He is happy when his family is happy, and he doesn’t like other people’s feelings to be hurt. He has a great sense of humor and is quick to give an unsolicited hug or kiss. So, in January 2018, when Brady’s personality seemed to change overnight, my husband and I were perplexed. This once jovial child began weeping after school in his room for lengthy amounts of time. He began waking up throughout the night and struggling to fall asleep, but he was constantly tired. He began to ask questions like, “Are you and dad getting a divorce?” and “What if something bad happens when ______?” Every day, his anxiety grew, he began declining birthday parties with friends, and he feared leaving my side, especially in public places. He found transitions from one activity to another stressful, he urinated frequently in amounts as though he just consumed gallons of water. What rattled me more than anything, though, was the look in his eyes. Those sweet gentle smiling eyes had turned into lifeless, dark voids on an expressionless face. His hugs became kicks and screams, his “I love you’s” became “you hate me’s.” Every night before bed, we knew we’d have a fight on our hands. A battle to brush his teeth, to get in the shower, to get out of the shower, the whole routine. And his sister’s and brother’s bedtimes pushed back because handling Brady required all hands on deck.

By March, he had spiraled to a new low. He was unpredictable, aggressive, and easily agitated. His handwriting changed and teachers remarked that he “zoned out” in school. The smallest trigger set him off for what seemed like hours. He had withdrawn even more. The poor kid was miserable. I felt isolated and ashamed. My husband and I wondered, “Did someone abuse him in some way? Had we missed earlier signs? Was he afraid to tell us something? How do you probe an already terror-stricken child for answers on such an adult topic? Where had we messed up in our parenting? Had we been too hard on him? Are we enabling horrible behavior when we try to love him through this?” That was just a fraction of the thoughts that kept me up at night. I stopped praying for him to get better, and started merely praying that I could get some help in knowing what made him snap in the first place.

Later that month, I confided in a friend about our challenges at home. She asked me more about Brady’s symptoms, and quickly directed me to the PANDAS Network to learn more about PANS/PANDAS. As luck (or God, I believe) would have it, she was a Nurse Practitioner who volunteered at the school health office. She knew about PANDAS through family experience, and she remembered that around the same time he spiraled in early March, she sent our daughter home from school with strep throat.

And with that, we set out on quite a journey together, Brady and us. And things got a whole lot better. The experience has brought some lows, for sure, but it has also had it’s share of blessings. I am so excited to tell you more soon, but in the meantime, if any of our story resonates with you, and you would like to talk to someone who can help, please email me at lindsey@gladiolusfamilyconsulting.com or visit www.pandasnetwork.org. That site has very straightforward, helpful information to help parents and caregivers.