Living with the Challenge That Is PANDAS

By: Lila Thompson
Updated: Dec. 22, 2020
Originally Published: Jan. 6, 2018

Our journey began when my son, Max, was just four years old. He was exceptionally bright and articulate for his age, so when he awoke one Monday morning unable to speak, I instantly sensed that something was amiss. He went from being a chatty little boy to stuttering and struggling to form words, asking me with wide eyes, “Wh -y-y-y Ca-n-n-t I T-t-t-t-a-a-lk?” It was as if a light had turned off; one moment he was fine, and the next, he was in panic.

Desperate for answers, I reached out to Children’s Hospital, only to be told that the earliest appointment was in April — it was February at the time. I found it baffling that the doctors and friends dismissed my concerns as a mere phase for a four-year-old. The abrupt and severe change in my son was frightening and debilitating.

As I registered him for preschool that week, his teacher expressed concern over the fact that I hadn’t mentioned his stuttering. I explained, “He doesn’t stutter! This just started!” After posting a video online, a friend suggested I have him evaluated for PANDAS, a term I had never heard before. Taking her advice, I urged his primary doctor to test for strep, but he showed little interest in doing so. I never received the results from that test.

Understanding PANDAS

PANDAS, or Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep, occurs when antibodies meant to combat a strep infection mistakenly attack the brain, causing various neuropsychiatric symptoms. A related term, PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), refers to extreme and sudden neuropsychiatric symptoms triggered by infections. To be diagnosed with PANDAS, there must be a clear temporal relationship with Group A strep.

PANDAS manifests with sudden neuropsychiatric symptoms, including tics, due to an abnormal autoimmune response. These symptoms may improve over weeks or days but can worsen again with subsequent infections.

For a few days, Max continued to stutter, though less severely. As his speech returned to normal on the tenth day, I began to doubt myself. Perhaps I had been overreacting. But soon after, during a summer trip to the beach, I noticed something peculiar. While excitedly singing in the backseat, he suddenly began screeching and flapping his arms, hopping around in the sand. I watched in awe, not realizing this would mark the beginning of a more troubling phase.

Unusual Behaviors and Emotional Upheaval

Other unusual behaviors soon followed: arm flapping, twitching, and various tics. He developed intense fears, nightmares, and insomnia, refusing to sleep alone or even be in a room by himself. He became anxious about going outside due to a newfound fear of bugs, regressing to baby talk and showing extreme sensitivity to light, sound, and touch. Public outings became tormenting; restaurants overwhelmed him, and he would only eat pasta and pizza, often gagging on anything else.

The hardest changes to navigate were the emotional upheavals. I vividly remember him crying, “Make it stop…” and asking, “Why can’t I stop crying, mommy?” The pain of hearing my sweet boy express such profound sadness was unbearable. His outbursts of rage became a common occurrence, which we referred to as “incidents.” I learned to recognize the signs: when his pupils dilated, I knew to prepare for a potential outburst.

As time progressed, the monster of anxiety and rage began to overshadow our sweet boy. We implemented strict safety measures, hiding sharp objects and ensuring he couldn’t hurt himself during these episodes. The turmoil lasted for weeks at a time, increasingly frequent and longer lasting.

Diagnosis and Treatment

Three years after his initial symptoms, we discovered that Max had elevated strep antibodies. Our Lyme specialist diagnosed him with PANDAS, explaining the connection between his symptoms and the autoimmune response. PANDAS is often misunderstood, requiring specialized care that can be hard to find.

Throughout this journey, we sought various treatments, from antibiotics to holistic therapies, and even pursued costly IVIG treatments. We faced many challenges, including navigating healthcare systems and dealing with the financial burdens of treatment. Every flare-up drained me emotionally, reminding me of the darkness we had faced, but Max continued to fight.

Today, seven years post-diagnosis, we still travel for treatment regularly. Max is now homeschooled, learning to identify his symptoms and advocate for himself. He’s gaining the tools to manage his condition, slowly finding his way back to wellness. All he needs is determination and proper medical support.

Hope for Other Families

If your child faces PANDAS after exposure to strep, I genuinely hope they receive timely and effective treatment. For those interested in learning more about home insemination, you might find useful insights on this blog. Additionally, Make A Mom is a great authority on the topic. For further information on pregnancy and home insemination, check out this excellent resource from the Women’s Health.

Summary

Living with PANDAS is challenging and requires understanding, patience, and specialized medical care. Through the ups and downs of this journey, we have learned about the importance of determination and support in managing this complex condition.