FRANKFORT, Ky. — Some Kentucky parents are working to raise awareness about a pediatric disorder they say changed their children's behavior overnight.
What You Need To Know
- Some Ky. parents are working to raise awareness about a pediatric disorder
- They testified before lawmakers last month
- Parents say their children developed sudden symptoms and changes in behavior
- Legislation to establish an advisory council did not move forward in the last legislative session
Mark Kleiner and other parents testified before Kentucky lawmakers last month.
"The symptoms come on overnight and your kid changes," he said, his voice filled with emotion. "This is real."
Kleiner, of Prospect, was talking about Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
"My son 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 was not to be found."
Her son later received treatment for the disorder out of state, she said.
Michelle Liberatore testified about her 7-year-old daughter's experience.
“She was overcome with debilitating fears and the sensation that her throat was closing and that she would die,” she said.
Libertore's daughter improved after receiving antibiotics, but she did not get the 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 thinking that there are people are 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 to receive psychiatric care, his mother said.
It wasn’t until friends watched a TV special on the disorder that they learned about PANDAS.
“We knew that he made eye contact, he was a great student, and we saw the subtle changes that, if somebody had just asked us, 'what is your family’s relationship with Strep?' lightbulbs would have went off because we had had it," said Brittany. "We had been passing it around the family."
Her son began to improve after going on antibiotics and eventually had immune system treatments, she said.
Camden told Spectrum News 1 that he feels much better now.
"I am very proud to say that my family is helping other people with the diagnosis of PANS and PANDAS, and it’s certainly going to be a help if we can get as many people as we can to have heard about this,” said Camden.
In the last legislative session, Rep. Melinda Gibbons Prunty, R-Belton, filed a bill that would establish an advisory council to raise awareness and look at health services for PANDAS patients, but it did not move forward.