By: Lydia Thompson
Updated: Dec. 22, 2020
Originally Published: Jan. 6, 2018
The journey began when my son was just four years old. Gifted with intelligence and eloquence, he awoke one Monday morning and was suddenly unable to speak. Alarmed, I watched as he struggled to form words, stuttering, “Wh—y-y-y Ca-n-n-t I T-t-t-t-a-a-lk?” His wide eyes filled with panic, and in an instant, it was as if a switch had flipped. One moment, he was my articulate child; the next, he was lost in a world of confusion.
Desperate for answers, I contacted Children’s Hospital only to be told they could see him in April—this was February. “Isn’t this concerning? It could be a stroke,” I insisted, but my worries fell on deaf ears. To those around me, it seemed like a typical phase for a four-year-old. But for me, the abrupt change in my son’s demeanor was frightening and debilitating.
As the week progressed, I had to enroll him in preschool. The teacher pulled me aside, concerned that I hadn’t mentioned his stuttering. “He doesn’t stutter,” I explained, “this just started yesterday!” I decided to share a video of him on social media, and one compassionate friend suggested I have him evaluated for PANDAS. At the time, I had no idea what PANDAS meant, but I followed her advice and insisted his doctor test him for strep. My requests were met with indifference, and ultimately, I never received those test results.
PANDAS—Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep—occurs when antibodies from a strep infection mistakenly attack brain proteins, leading to neuropsychiatric symptoms. A broader term, PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), describes severe and sudden neuropsychiatric symptoms triggered by infections. It’s important to note that PANDAS requires a connection to Group A strep.
This condition can cause sudden neuropsychiatric symptoms, including tics, due to an abnormal autoimmune response. Symptoms may improve over time but can flare up again with subsequent infections.
For a few days, my son’s speech issues persisted but gradually diminished. As his stuttering faded, I began to doubt myself—was this just a developmental phase? Then, on the tenth day, he woke up, spoke clearly, and everything seemed to return to normal. And just like that, I forgot.
Months passed, and we were enjoying a summer day at the beach. As he sang happily in the backseat, I was taken aback when he suddenly began screeching and flapping his arms as he hopped on the sand. I watched in disbelief as he leaped about, flapping like a bird.
This was just the beginning. There were moments of arm flapping, twitching, and facial tics that erupted seemingly out of nowhere. Intense fears, nightmares, and insomnia took hold. My son, once so brave, could no longer sleep alone, if at all. He followed me from room to room, begging to be held, paralyzed by a newfound fear of being alone. Summer turned into a battle to get him outside due to his terror of bugs. He regressed in behavior, even reverting to baby talk at six years old. His sensitivities to light, sound, and touch escalated, making daily life a challenge.
Public outings became anxiety-fueled ordeals. Trying to navigate restaurants or shops, he would become overwhelmed and unable to cope with the noise. His diet narrowed to just pasta and pizza, and any attempt to introduce variety led to gagging and choking. The hardest parts to witness were his profound sadness and uncontrollable rage. I vividly recall him sobbing, “Make it stop…” and crying, “Why can’t I stop crying, mommy?” My heart shattered each time.
His emotional outbursts, which we referred to as “incidents,” became a regular occurrence. We learned to recognize the signs, especially when his pupils dilated—a signal of brain inflammation. In those moments, he transformed from my sweet son into someone unrecognizable, leading us to take extreme precautions to ensure his safety.
As time passed, the “monster” within him began to surface more frequently and for longer durations. We watched helplessly as our son seemed to slip away.
Diagnosing PANDAS involves specific criteria, including the sudden onset of OCD and severe tics, along with relapsing symptoms. Often, PANS is triggered or worsened by infections like Lyme disease. Three years after the onset of symptoms, we learned that my son had elevated strep antibodies. Our Lyme specialist explained the connection to PANDAS and noted signs of Sydenham’s chorea, which is characterized by involuntary movements and neurological symptoms.
Navigating the medical landscape for PANDAS is challenging. We found it necessary to seek out a specialist and endure long waitlists for appointments. By the time we received a diagnosis, three years had passed since I first encountered the term PANDAS. During this time, my son exhibited fluctuating symptoms and new challenges, all exacerbated by delayed diagnoses of Lyme and its co-infections.
For a child with PANDAS, a simple regimen of ibuprofen can alleviate symptoms of brain inflammation. However, for chronic conditions, treatment can span years and requires ongoing adjustments based on the child’s response.
Now, seven years post-diagnosis, we continue to battle. We’ve tried antibiotics, antivirals, holistic approaches, and even pursued costly IVIG treatments. Each flare-up feels like a punch to the gut, echoing the pain we felt seven years ago.
When my husband catches a cold, it’s just a cold for him. For our son, it can trigger uncontrollable tics, debilitating depression, and fits of rage. Each flare-up forces him to retreat from normal activities, and the emotional toll is exhausting.
Despite all this, he is surviving. He is homeschooled after years of struggles in traditional education, and we manage his condition with tailored therapies and diets at home. He is learning to recognize his triggers and ask for help, showing determination to heal.
If your child ever develops PANDAS after a strep exposure, I hope you find a knowledgeable doctor who can guide you through this difficult journey.
For additional support and information on related topics, you can also explore resources like Healthline’s guide on IVF, or check out Modern Family Blog’s post for more insights. And if you’re considering fertility options, don’t forget to look into boosting fertility supplements.
Summary
This article shares a parent’s harrowing yet hopeful journey through the challenges of living with a child diagnosed with PANDAS. It highlights the sudden onset of symptoms, the struggle for proper diagnosis, and the ongoing fight for effective treatment over several years. Ultimately, it reflects the resilience of both the child and family amidst the complexities of this autoimmune disorder.