Rare pediatric illnesses discussed by Health and Family Services committee

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FRANKFORT, Ky. (WTVQ/Press Release) – The focus on the June 16 meeting of the Interim Joint Committee on Health and Family Services was on bringing awareness to rare pediatric illnesses. The committee is co-chaired by Representative Kim Moser (R-Tayor Mill).

Parents and advocates talked about the prevalence of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS).

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PANDAS symptoms, according to the National Institute of Mental Health, “are usually dramatic, happen ‘overnight and out of the blue,’ and can include motor or vocal tics and obsessions or compulsions.”

Joining parents and advocates in presenting these disorders to the committee was Representative Melinda Gibbons Prunty (R-Belton). She has been a longtime advocate for patients with PANDAS and PANS, as seen in her previous sponsorship of 2020 legislation that would have put together a task force to study these diseases. Due to the pandemic and a shortened legislative session, the legislation did not move forward.

“These kids and these families need help,” Prunty said. “It should not take ten years to get a diagnosis, and grandparents should not be forced to cash out their retirement to obtain treatment that can only be accessed out of state.”

Campbell County native and PANDAS parent, lobbyist and advocate Michelle Liberatore described the experience her daughter had prior to her PANDAS diagnosis.

“She suffered [from] insomnia…she was unable to focus. She developed muscle ticks and loss of balance. She started to develop suicidal thoughts at the age of seven,” Liberatore said.

In talking about the issues she went through in getting her daughter a proper diagnosis and access to medical care, she added, “My daughter needed advanced intervention, but there was no one in the state of Kentucky to treat her.”

Kelly Joplin, Associate Professor at the Carver School of Social Work at Campbellsville University, testified to the committee about the prevalence of this disease and the lack of awareness providers in Kentucky have about the disorder.

“Almost 1 in 200 children may have PANS or PANDAS. This is not rare. What we are learning is that this is a lot more common than we think. Nationally, 33 percent of children see more than five doctors before being properly diagnosed,” Joplin said.

Representative Steve Sheldon, R-Bowling Green, praised the presenters for their commitment to raising awareness about the prevalence of PANDAS and PANS and said the lack of knowledge providers have about these diseases is troubling.

“Unfortunately, there is a tendency to be too quick to pass [this] off. I feel every piece of frustration you are feeling. Our prayers are with you,” Sheldon said.

For more information on issues discussed during the meeting, please visit legislature.ky.gov or follow the link here to view all meeting materials. To watch the full meeting, visit the Legislative Research Commission YouTube page here.