Television

CHARLOTTE, N.C. — Imagine your child coming down with a common infection like strep, then suddenly turning into a screaming, raging, disconnected ghost of themselves.

That’s exactly what the Macklin family said happened to their daughter, Makayla.

A pair of Wellesley families are taking their fight to Beacon Hill as they push for health insurance companies to cover treatment for PANDAS, a rare syndrome that can come on suddenly in children, hit hard, and take years to diagnose.

She is fighting for her family and others in front of the some of our state’s most powerful people, and Kaitlyn Fowler is only in fifth grade.

Kaitlyn is helping her mother Sophie with a push to get South Carolina to recognize PANDAS or PANS.

Her brother suffers from Pediatric Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). According to the National Institute of Mental Health, it is characterized by the sudden, dramatic onset of symptoms like obsessive thoughts, compulsive behaviors, and motor or vocal tics.

It’s a scene WYTV has shown you many times before in our Keeping Kids Safe segment, the unfortunate reality of children living with the auto-immune disease known as PANDAS.

A Canadian documentary called “Stolen Childhood” puts a spotlight on the disease, highlighting the impact on families, their journey and the consequences of medical misdiagnosis. It was shown last week at the Davis Family YMCA.

The film’s producers say their overall goal is to educate not only current medical professionals but those up and coming in the field, and to offer hope to families still struggling to get a diagnosis for their child.

A hope that’s also shared by local PANDAS families.

Parents say it is like their child changed overnight, but now a local doctor is on a personal mission to be on the cutting edge of treatment and diagnosis.

One afternoon in the winter of 2017, Corie Entrop’s 10-year-old son came home from school and began pulling out his hair. When the Alberta mother pleaded with him to tell her why he was doing it, he was unable to provide an explanation.

“I don’t know,” he responded. “I need to pull out my hair.”

Parents of PANDAS parents face skepticism even as their children recover.

Alexia Baier was an eager-to-learn, 4-year-old girl beginning pre-K in a suburb outside of Chicago. She thrived academically — counting, painting and playing with other children.

But five months after starting pre-K, she was infected with a bacteria that several millions of people get every year, according to the Centers for Disease Control and Prevention. The bacteria, group A strep, caused Alexia to get strep throat, a condition children usually recover from easily with treatment.

LISBON, Ohio (WYTV) – Dr. Elizabeth Spaar explains PANDAS — how it happens and what it causes.