It all began when he was just four years old. My son was bright beyond his years and extremely articulate. So, when he woke up one Monday morning unable to form words, alarm bells rang in my head. One moment he was his usual self, and the next, he was stuttering and struggling to communicate. “Wh -y-y-y Ca-n-n-t I T-t-t-t-a-a-lk?” he asked, eyes wide with panic. It was as if someone had flipped a switch.
Panicked and unsure, I reached out to Children’s Hospital, only to be told they could see him in April. It was February. “Isn’t it concerning this could be a stroke?” I exclaimed, but my worries fell on deaf ears. Friends, doctors, and even the hospital brushed it off as a typical phase for a four-year-old. To me, the suddenness of the change in my son was nothing short of terrifying.
As the week progressed, I had to enroll him in preschool. A concerned teacher pulled me aside, noting he hadn’t disclosed his stuttering. “He doesn’t stutter! He just woke up like this!” I insisted.
In a moment of desperation, I shared a video of him on social media, prompting a friend to suggest he be evaluated for PANDAS. I had never heard of it, but I took her advice and contacted his doctor to request a strep test. He wasn’t interested. I pressed on, but never received results from that test.
PANDAS, or Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep, occurs when antibodies produced in response to a strep infection inadvertently target brain proteins, leading to various neurological and psychiatric symptoms. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a broader term encompassing severe, sudden neuropsychiatric symptoms due to infections. PANDAS specifically requires a link to Group A strep.
PANDAS can trigger a rapid onset of symptoms like tics due to the body’s improper autoimmune response. These symptoms may wane over time but can resurface with new infections.
My son’s stuttering persisted for a few days, although less severely. As his speech returned, I started doubting my own judgment. Perhaps I had overreacted. Then, on the tenth day, he woke up speaking clearly, and I forgot the ordeal.
Months passed, and as summer approached, we were excitedly heading to the beach. My son sang in the backseat, eager to build sandcastles. However, upon exiting the car, he began screeching and hopping from foot to foot, flapping his arms as he jumped across the sand. “Look at that,” I thought, bemused.
This was only the beginning. We noticed bizarre arm flapping, twitching, and a series of tics manifesting aggressively. Sudden fears, nightmares, and insomnia plagued him. He could no longer sleep alone or even be in a room by himself. He shadowed me constantly, begging for comfort. A newfound fear of bugs kept him indoors all summer, and he regressed to baby talk. Light, sound, and touch became overwhelming for him, so we kept the curtains drawn.
Attempts to venture outside were futile. Public spaces turned him into a bundle of anxiety, unable to cross the threshold of crowded places. His diet narrowed to just pasta and pizza, rejecting anything else with distressing physical reactions. The most challenging changes were the overwhelming sadness and sudden episodes of rage. I vividly remember him weeping, “Make it stop,” or crying, “Why can’t I stop crying, mommy?”
Some nights, I listened helplessly as my little boy expressed self-loathing and loneliness, and then, without warning, he would erupt in rage. We termed these outbursts “incidents.” I could see the storm brewing in his eyes, a telltale sign of the chaos to come. The dilation of his pupils indicated inflammation in his brain.
Our sweet boy transformed into a tempest of anger and sadness. To keep him safe, we took precautions, locking away sharp objects. During these dark times, my daughter would seek refuge with neighbors to escape the turmoil. The monster inside him began to linger longer and more frequently until we felt like we were losing our son.
Diagnosing PANDAS hinges on five criteria, including a sudden onset of OCD or severe tics. Symptoms typically relapse and remit. PANS can be exacerbated by infections like Lyme disease.
Three years after his initial symptoms, we learned he had elevated strep antibodies in his blood, along with other alarming markers. Our Lyme specialist explained PANDAS and identified Sydenham’s chorea, characterized by rapid, involuntary movements.
PANDAS is often misunderstood, and we had to seek out a specialist on our own. We were placed on an extensive waitlist at a local Boston hospital, while another doctor in Connecticut was available sooner. We still consult him today.
Three years since that fateful morning when my son lost his voice, I realized how many symptoms had come and gone during that time. Due to delayed diagnoses of Lyme and PANDAS, his immune system had developed chronic autoimmune issues.
For children with PANDAS, simple ibuprofen can alleviate symptoms of brain inflammation. However, for those with chronic conditions, the healing process is lengthy. We embarked on a journey of treatments, therapies, and regular check-ins with our doctor, tweaking as needed.
Now, seven years post-diagnosis, we’ve tried antibiotics, holistic methods, and even expensive IVIG treatments. Every flare-up still takes my breath away, and the despair feels as heavy as it did years ago. I often wonder how I’ll cope when darkness descends again.
While a cold for my husband may mean a sniffle, my son faces an onslaught of uncontrollable tics, deep depression, and anxiety that feels like a protective armor suffocating him.
Despite the challenges, my child is persevering. He’s homeschooled now, managing his condition in a more conducive environment. He’s learning to recognize the signs of a PANDAS flare and advocate for himself. With determination and access to adequate medical care, he’s on the path to healing.
If your child faces PANDAS after a strep exposure, I hope you have access to a knowledgeable doctor who can guide you through this journey.
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Summary:
Living with PANDAS is a harrowing journey marked by sudden changes in behavior, severe anxiety, and a battle for proper diagnosis and treatment. The experience can leave parents feeling helpless, but with determination and appropriate medical support, there is hope for recovery and understanding.
Keyphrase: PANDAS diagnosis and treatment
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