Understanding PANS/PANDAS: A Mother’s Journey of Advocacy and Hope

When Miles and Anna Coleman first noticed subtle changes in their son Asher after an illness, they never imagined it would lead them down an eight-year journey of navigating a misunderstood autoimmune condition. Today, these parents are fierce advocates for raising awareness about Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), conditions that have profoundly affected two of their four children.

Early Signs and Challenges

“Asher began showing signs of obsessive-compulsive disorder (OCD), anxiety, and developmental regression after contracting hand, foot, and mouth disease followed by impetigo,” Anna recalls. “Initially, we thought it was autism, but his health challenges kept escalating.” Despite plasma infusions and antibiotics, Asher’s symptoms persisted, eventually leading to a diagnosis of Combined Variable Immunodeficiency (CVID) at age eight.

For her younger son, Knox, the onset was sudden and dramatic. “After a strep infection and a virus in December 2023, he transformed overnight—intense meltdowns, rage episodes, and even restrictive eating,” Anna shares. Although antibiotics brought temporary relief, finding long-term solutions proved challenging.

The Long Road to Diagnosis

Securing proper diagnoses for her children was a daunting process. Asher’s PANS diagnosis took eight years, while Knox’s journey, though quicker, faced its own hurdles. “We were dismissed by so many doctors who attributed their symptoms to ADHD or behavioral issues,” Anna says. “It wasn’t until we sought out specialists in South Carolina and Indiana that we found answers.”

The financial burden of treatment, often not covered by insurance, added to the family’s stress. “We drained our savings and even considered dipping into retirement funds to afford the care they needed,” she admits. “This is a reality many families face.”

Family Life and Emotional Toll

The disease has reshaped the Coleman family’s daily life. Routines were adjusted to prioritize healing, and their home environment was carefully managed to eliminate stressors like mold exposure. “It’s been incredibly challenging, especially for our other children who’ve had to adapt to this new normal,” Anna notes. Despite the difficulties, the family has found ways to foster resilience and connection.

Community Stigma and Awareness

Stigma remains a significant barrier for families dealing with PANS/PANDAS. “People don’t realize these kids have inflamed brains and cannot control their actions during flares,” Anna explains. “There’s a tendency to blame parents or assume it’s a behavior issue, but it’s so much more than that.”

Anna draws strength from her faith, citing a powerful passage in John 9:1-3 where Jesus emphasizes compassion over judgment. “Our children need understanding and support, not punishment,” she says.

Hope and Advocacy

The Colemans have found hope through holistic treatments, dietary changes, and innovative therapies like IVIG plasma infusions. They’ve also leaned on organizations like PANDAS Network and specialists like Dr. Scott Antoine, who provide invaluable guidance.

Anna’s advice for parents navigating similar challenges? “Trust your instincts, seek second opinions, and connect with support groups. You’re not alone, and there is hope.”

As Anna continues her advocacy, she hopes to spark a broader conversation about PANS/PANDAS. “Raising awareness is critical,” she says. “No family should have to fight this hard for their child’s health.”