Local Families Fight Back Against PANDAS, Plan Event In New Hope

NEW HOPE, PA — Caring for a child that has fallen ill can be challenging enough in the best of circumstances. But when the illness is difficult to diagnose, widely misunderstood, and even doubted altogether by some doctors, it's a whole different ballgame.

That's the experience of the family of Aidan Gilchrist, a six-year-old Lansdale resident and North Penn School District first grader suffering from PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.

"Never did we see this coming," Aidan's mother, Leah Gilchrist, said. "There were zero signs that we were entering the biggest fight of our lives."

Families fighting PANDAS stress the importance of raising awareness. An upcoming Casino Royale fundraiser night in New Hope is being held on Nov. 3 to raise money and awareness for the illness.

Aidan first fell ill on March 15. After a febrile seizure, he developed an infection in his right ear, and then an upper respiratory infection. After a treatment of Amoxicillin he returned to school, but shortly thereafter developed conjunctivitis in both eyes. Things continued to grow worse.

Symptoms ranged from the upsetting (hallucinations, bed wetting at night, ADHD and OCD-like behavior) to the horrifying (graphic hallucinations, extreme anxiety, loss of motor control, rapid or delayed breathing, uncontrollable spitting). A spread of 23 different doctors at Nemours Alfred I. Dupont Hospital for Children and Children’s Hospital of Philadelphia were baffled.

"After being told our son’s symptoms were made-up, he was attention seeking, and that he needed a behavior evaluation, I knew we were just spinning our wheels," Leah Gilchrist said. "No one was listening."

It wasn't until she posted a Facebook video of her son that someone took notice and suggested she find a PANDAS doctor. On June 5, a Pittsburgh doctor formally diagnosed Aidan.

(To donate to this cause and to learn more about Aidan's battle with PANDAS, see here.)

It is not a rare condition. According to the PANDAS network, one out of very 200 children suffers from it. The network caused by a typical strep infection, which then triggers a misdirected immune system response that causes inflammation of the brain. This is responsible for the wide range of physical and emotional symptoms.

"Otherwise normal children are lost overnight after a simple case of strep takes a wrong turn," Leah Gilchrist added.

Because there is disagreement in the medical community about PANDAS— with some doctors still arguing it doesn't exist — there is not yet an official diagnosis code. This means that families with children facing PANDAS cannot have their medical bills covered by insurance, making it incredibly costly.

Aidan's case is also typical; PANDAS often goes undetected, misdiagnosed, and undiagnosed entirely. No child presents the exact same symptoms, complicating things further. But for the Gilchrist family, the evidence is all too plain.

"Depression and sadness overtook him and my extremely bubbly, loving, funny boy was gone. To this day a part of him still is."

Tickets for the Nov. 3 event are available here.

Story by Justin Heinze, Patch Staff

Images courtesy Leah Gilchrist