By: Lila Thompson
Updated: Dec. 22, 2020
Originally Published: Jan. 6, 2018
Photo by: Andrew Garland / EyeEm / Getty Images
It all began when he was just four years old. My son was exceptionally bright and articulate for his age. So, when he woke up one Monday morning unable to speak, I immediately sensed something was wrong. In an instant, my eloquent little boy was reduced to a stuttering mess, desperately trying to express himself. “Wh -y-y-y Ca-n-n-t I T-t-t-t-a-a-lk?” he asked, his eyes wide with fear.
It was as if a switch had flipped. One moment he was fine, and the next, he was panicking and unable to communicate. Filled with dread, I felt helpless. When I called the Children’s Hospital, I was told the soonest appointment was in April. It was February. “Aren’t you concerned this could be a stroke?” I pleaded, but my concerns fell on deaf ears. It baffled me that his primary care physician, the hospital staff, and even friends dismissed it as a typical phase for a four-year-old. To me, the sudden change in our son was terrifying and unmistakable.
That week, I had to register him for preschool. The teacher pulled me aside, expressing concern. “You didn’t mention that he stuttered…” she said tentatively. I replied, “He doesn’t! This just started yesterday!”
Desperate for answers, I shared a video of my son on social media. A friend suggested I have him evaluated for PANDAS, a term I had never heard before. Afterward, I contacted his doctor, urging him to test for strep. He was reluctant, but I persisted. Unfortunately, I never received any results from that test.
Understanding PANDAS
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep. It occurs when antibodies triggered by a strep infection mistakenly attack brain proteins, resulting in neurological or psychiatric symptoms. PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, refers to severe, sudden neuropsychiatric symptoms caused by infections. PANDAS falls under this umbrella, requiring a link to Group A strep.
PANDAS can lead to rapid-onset neuropsychiatric symptoms, like tics, due to an abnormal autoimmune response. These symptoms can improve over time, but a new infection can cause a sudden relapse.
Initially, my son’s stuttering persisted for a few days, though it lessened in intensity. As his speech issue faded, I began to doubt my own judgment. Perhaps this was merely a developmental stage, and I had overreacted. Then, on the tenth day, he woke up speaking clearly again, and the stuttering vanished from our lives—at least for a while.
Summer Struggles
As summer approached, we were excited to head to the beach. My son sang joyfully in the backseat, eager to build sandcastles. But once we stepped out of the car, he began to screech and hop from foot to foot. I watched, puzzled, as he flapped his arms like a bird. It was one of many strange behaviors that summer.
There were episodes of arm flapping, twitching, and a series of facial and neck tics that emerged with alarming intensity. He began experiencing intense fears, nightmares, and insomnia. Our son could no longer sleep alone, unable to be in a room by himself. He followed me around, begging for comfort, and refused to go outside for an entire summer due to a sudden fear of bugs.
Regressive behaviors resurfaced; at six, he began to revert to baby talk. Extreme sensitivities to light, sound, and touch compounded his distress. Public places became a source of anxiety for him, and he developed a limited diet, choking at the table when trying to eat anything outside of pasta and pizza.
The most heart-wrenching changes were his feelings of sadness and fits of rage. I remember moments of him sobbing, “Make it stop…,” and asking, “Why can’t I stop crying, Mommy?” My heart broke as I listened to my little boy express how alone he felt and how much he hated himself.
Anticipating Incidents
We started to anticipate his outbursts, which we referred to as “incidents.” When I noticed his pupils dilating, I would warn my friend, “There’s going to be an incident…” and we would prepare to intervene. We later learned that this dilation indicated inflammation in the brain, leading to infection-induced encephalitis.
My child would wail and bang his head against the wall for reasons we couldn’t comprehend. When his sweet personality was overtaken by this raging monster, we took precautions to keep him safe, locking away sharp objects and holding him tight during his episodes.
As time passed, the monster became more prevalent, and we started to lose our son. The diagnosis of PANDAS is based on five criteria, including the sudden onset of OCD and severe tics. Symptoms can be relapsing and remitting, often exacerbated by underlying infections like Lyme disease.
Finding Answers
Three years after the initial onset of symptoms, we discovered elevated antibodies for strep in his blood. Our specialist explained PANDAS and identified signs of Sydenham’s chorea, a neurological disorder marked by uncontrollable movements.
Finding a knowledgeable doctor became imperative, leading us to a specialist who was three hours away. By the time we received the diagnosis, three years had passed since I first learned about PANDAS. Over those years, my son experienced episodes of varying symptoms, leading to chronic autoimmune issues.
For children with PANDAS, a consistent dose of ibuprofen can alleviate symptoms of brain encephalitis. However, for those with chronic conditions, effective treatment may take years. It requires a trial-and-error approach with ongoing medical supervision.
Continuing the Fight
Now, seven years post-diagnosis, we continue to fight against the challenges of PANDAS. We’ve tried various treatments, including antibiotics, antivirals, and holistic approaches. Each flare-up is as devastating as the first, and I still grapple with how to navigate the dark days.
If my husband catches a cold, it might just be a passing inconvenience for us, but for our son, it could trigger uncontrollable tics, deep depression, or intense rage.
Despite the struggles, my child survives. He is homeschooled to better manage his condition, and he is learning to recognize the signs of a PANDAS flare. He is beginning to understand his triggers and how to seek help. His determination to heal gives me hope.
If your child faces PANDAS after a strep exposure, I sincerely hope they receive the proper care from a knowledgeable physician. For more insights on fertility and health trends, consider visiting this excellent resource. It can provide valuable information about pregnancy and home insemination, just like the comprehensive details available at the CDC.
Summary
Living with a child diagnosed with PANDAS presents numerous challenges, from sudden behavioral changes to intense emotional struggles. Understanding the condition, seeking proper medical care, and navigating treatment options are critical. The journey is long and fraught with difficulties, but with determination and support, there is hope for recovery.