Frankfort, Ky. – Some parents in Kentucky are working to raise awareness about a pediatric condition that they say has changed their children’s behavior overnight.
What you need to know
Some Ky. Parents Are Working To Raise Awareness About Pediatric Disorder
They testified before lawmakers last month
Parents say their children developed sudden symptoms and changes in behavior
Legislation establishing an advisory council has not progressed in the last term
Mark Kleiner and other parents testified before Kentucky lawmakers last month.
“The symptoms come overnight and your child changes,” he said in a voice full of emotion. “This is real.”
Kleiner, from Prospect, talked about pediatric acute neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).
“My son has battled this disease for over 10 years here in Kentucky,” said Kelly Joplin, a representative of the Southeastern PANS/PANDAS Association. “The diagnosis and treatment could not be found.”
Her son was later treated out of state for the condition, she said.
Michelle Liberatore testified about her 7-year-old daughter’s experience.
Brittany Kleiner with her son Camden at the Kentucky Capitol. (Brittany Kleiner)
“She was overcome with debilitating fear and the feeling that her throat was closing and that she was going to die,” she said.
Libertore’s daughter improved after receiving antibiotics, but she didn’t receive proper treatment and diagnosis right away, she said.
Two years ago, Kleiner’s 11-year-old son Camden suddenly changed after developing a cough and fever, he told Spectrum News 1.
“He had delusions and we thought it was because of the high fever and that could be a symptom, and paranoia, and think there’s people watching and just, it wasn’t our kid, you know?”
Camden became anxious and his handwriting changed, according to his mother, Brittany.
They were shocked when Camden was first diagnosed with autism, she said.
Months later, he was hospitalized for psychiatric care, his mother said.
It wasn’t until friends watched a TV special about the condition that they learned about PANDAS.
“We knew he made eye contact, he was a great student, and we saw the subtle changes that if someone had just asked us, ‘what is your family’s relationship with Strep?’ light bulbs would have gone out because we’d had it,” Brittany said. “We’d passed it on to the family.”
Her son started to improve after he was given antibiotics and eventually received immune system treatments, she said.
Camden told Spectrum News 1 that he feels much better now.
“I’m very proud to say that my family is helping other people with the diagnosis of PANS and PANDAS, and it will certainly help if we can get as many people as possible to hear about this,” Camden said.
In the last legislative session, Rep. Melinda Gibbons Prunty, R-Belton, introduced a bill that would create an advisory board to raise awareness and look at health services for PANDAS patients, but it didn’t move forward.