Since my oldest, Jackson, was about 18 months old, life in our home has been anything but simple. He was an easy baby and a sweet toddler—until suddenly, he wasn’t. At first, my husband, our doctors, and I chalked it up to typical toddler boy behavior. Then came concerns about delayed speech, followed by sensory issues, and eventually an ADHD diagnosis when he was five and in transitional kindergarten (TK). I dove headfirst into research, determined to help him in every way possible. We spent years in speech and occupational therapy. Daily brushing routines, endless jumping from the couch onto piles of pillows—nothing felt too extreme if it might help. We were willing to try absolutely anything.
When Jackson was officially diagnosed with ADHD, we agreed with his doctor to start medication before Kindergarten, since TK had been so incredibly difficult. He was constantly in trouble, and notes about his behavior came home nearly every day. Playdates became something I dreaded. He would push, hit, bite—and no consequence seemed to stop it. When we started ADHD medication, I truly believed it would be the answer to our prayers. I expected an immediate change. Along with medication, we sought help from psychiatrists, psychologists, and counselors, hoping to ease what our entire family was enduring.
Over the years, we tried every medication imaginable—every type, every combination. Stimulants and non-stimulants, methylphenidates and amphetamines, short-acting and extended release. Every. Single. Option. Nothing worked. In fact, his behavior continued to worsen. We even made several emergency trips to our local behavioral hospital, but each time they found nothing emotionally or mentally “wrong.” We were sent home without answers, without direction, and without hope. It was agonizing to watch my child suffer while having no idea how to help him. For a long time, I kept our reality hidden. Only close friends and family truly knew what our daily life looked like.
At the time, I had a blog mostly focused on recipes, outfits, and party ideas, with the occasional personal post. In early November 2017, emotionally depleted and completely worn down, I sat at my computer one night and let everything spill out. I wrote from a place of exhaustion and desperation—I just needed to vent. That post included words I never imagined I’d say out loud, admitting how hard parenting had become, how lonely and overwhelming it felt. I wrote about the relentless meltdowns, the screaming, the violence, the fear, the physical and emotional toll. I wrote about canceled takeout nights, rigid routines, and the heartbreaking reality that consistency still wasn’t enough. I shared how I had to physically restrain my growing child, how his words cut deeply, and how carefully I guarded my own emotions so I wouldn’t say something I could never take back.
I wrote about the countless tests, therapies, medications, and expenses—most of them not covered by insurance. I wrote about the specialists we had seen and the punishments that never worked. I confessed the guilt, the self-doubt, and the crushing loneliness. I wrote about Allen traveling for work, about having no parents left to lean on, and about my other children quietly suffering as Jackson’s needs consumed me. I ended with the truth: my child didn’t choose this life, and neither did we.
The post was titled “My Sweet Child.” I hit publish and walked away.
Looking back now, I believe that post served a much greater purpose than simply venting. I truly believe God was guiding my hands as I typed. That same day, someone I had never met read my words and reached out. A friend messaged me, saying she had another friend who wanted to talk after reading my post. Nervous but hopeful, I agreed. During that first phone call, she asked me a question that changed everything: “Have you ever heard of PANDAS or PANS? I think your son has it.”
I had heard of it—but I thought it only occurred after multiple strep infections. Jackson had only had strep once when he was three or four. I was wrong. We talked for nearly two hours, comparing stories and realizing how eerily similar our experiences were. She warned me that not everyone believes in the diagnosis, that it’s relatively new, and that specialists are hard to find. Still, I was determined. The next morning, I called our new pediatrician and explained everything in a frantic two-minute monologue. To my relief, the doctor listened, understood, and agreed to run the tests. When he said, “Yes, we will test him,” it felt like a miracle. Blood was drawn, and we waited.
Four days later, on a Friday night, the doctor called. The results showed elevated strep titers and elevated Mycoplasma titers. PANDAS is often marked by a sudden onset of mood changes, OCD, tics, or unusual behaviors. Jackson had experienced that—but years earlier. It still counted. In fact, it aligned with a serious infection he’d had around 18 months old. Suddenly, everything made sense. For years, we had been on the wrong path—through no one’s fault—but the realization was both validating and devastating.
With this new diagnosis, we began a new journey. We found new doctors and new treatment plans. We traveled to New Jersey to see a PANDAS specialist who truly understood the disease. We tried antibiotics. Nothing changed. In September 2018, Jackson received a low-dose IVIG treatment. Still nothing. His flares worsened, and school—private or public—remained unbearable for him.
Here in Charlotte, we found comfort in a supportive community of PANDAS/PANS moms. After more setbacks, we pursued holistic care and later traveled to Washington, DC, to see another specialist. A clearer plan emerged: antibiotics again, a short steroid trial, testing our entire family, consulting an ENT for a possible tonsillectomy, deep-cleaning our home, and preparing for more intensive treatments like high-dose IVIG or Rituxan.
Having a plan brings some comfort, but daily life is still unpredictable and exhausting. Jackson is currently on medical homebound schooling. This disease is cruel and unfair. It has stolen his childhood piece by piece. Jackson turned 13 at the end of August. He should be in seventh grade with his friends, not fighting for his health. This is not the life we imagined for our beautiful 8 lb 8 oz baby boy born in August 2006.
I feel grateful for progress and heartbroken by reality—sometimes all at once. I long for the day my children can all thrive together, side by side. We hold tightly to hope, to faith, and to the promise that healing is still possible.
“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” — Psalm 34:18
