A local woman is working hard at getting the word out about a pair of rare conditions, even going all the way to Frankfort to testify in front of a legislative committee to ask for help in battling the disorders.
Kelly Joplin testified Thursday in front of the House Health and Family Services Committee in support of a resolution that would bring promote awareness and aid in finding resources for families dealing with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS).
In addition, Joplin recently announced that she had been appointed to the Southeastern PANS/PANDAS Association (SEPPA) board of directors, a position she hopes to use to further raise awareness.
PANDAS and PANS are autoimmune diseases that trigger behaviors in children that change them from a seemingly normal, healthy child to one plagued by tics, emotional outbursts, obsessive-compulsive behaviors and anxiety.
These changes can happen abruptly, even overnight, Joplin explained.
“You can have a perfectly healthy child, and the next day they’re a totally different child with a totally different personality,” she said.
In the case of PANDAS, the change is due to a strep infection, while in PANS the disorder can be due to any viral or bacterial infection, such as the flu.
In many cases, the disorder can be misdiagnosed as a psychiatric disorder, or the child could be labeled as being autistic, Joplin said.
In those cases, children can be treated with the wrong medications – when all it may take is a round of strong antibiotics.
PANDAS/PANS causes a post-infection encephalitis – the underlying infection causes the immune system to misdirect itself, thereby causing an inflammation in the brain.
Early diagnosis and treatment is essential, because if left untreated the symptoms get worse.
A child may get better in time, Joplin explained, but subsequent strep infections cause worsening flair-ups of PANDAS, with each flair-up bringing worse and worse symptoms.
PANDAS can cause a trigger of the “fight or flight” response, she explains. A child may wake up fearful or anxious, not allowing anyone to touch them or even throwing objects.
“A lot of times they’ll rage and they’ll scream.”
The condition can also cause eating disorders, or cause the child to be afraid to eat and drink altogether.
Joplin said the diagnosis is complicated by that fact that some medical and health care representatives don’t recognize the condition, even though it has been studied for around 20 years.
While normal antibiotic treatments can stop a mild or moderate onset, one roadblock to that treatment is that many doctors have been warned against over-prescribing antibiotics to prevent antibiotic-resistant strains of diseases.
For severe cases of PANS and PANDAS, a treatment called Intravenous Immunoglobulin (IVIG) has been proven effective, but that comes with its own problems, not the least of which is cost.
Across the board, insurance companies have decided to repeal coverage for IVIG treatments for PAN and PANDAS despite the research proving it can help.
Without insurance coverage, families are left to foot the bill of a $58,000 treatment.
Many families, therefore, go without the treatment because they can’t afford it, Joplin said. Others go into severe financial debt to cover the costs.
That’s why the Frankfort resolution is so important, she said.
House Concurrent Resolution 78 would designate a task force that would help to raise awareness, educate medical treatment providers on how to provide early treatment, and provide resources for families dealing with the disease.
It could also promote research for the disease and identify barriers to insurance coverage.
The resolution was brought to the House of Representatives by District 15 Representative Melinda Prunty – in a way worthy of its own story.
Joplin explained that Prunty had no previous connection to the disease. No one came to her asking to look into it.
Rather, Prunty read about the condition in a national legislators conference booklet discussing legislation that has already been introduced in other states.
Prunty’s husband is a physician, and even he had not heard of PANS/PANDAS before, Joplin said.
Prunty contacted the Kentucky PANDAS/PANS Support Group for more info, which Joplin called a blessing.
“This is an ideal thing. This never happens with legislators. Normally, you have to go to them and beg them. She was doing the opposite,” Joplin said.
The resolution passed favorably out of committee on Thursday, but its future remains to be seen.
Meanwhile, Joplin will continue to serve on the SEPPA board.
“I’m just thrilled to be on the board, to work with competent, knowledgable women from states from West Virginia to Florida to Arkansas,” Joplin said.
“It’s really exciting to see what’s happening on a national level in terms of the number of states who have passed PANDAS awareness resolutions, PANDAS task forces and mandated insurance for PANDAS treatment.”
For more information on PANDAS and PANS, Joplin suggested visiting the Kentucky PANDAS/PANS Support Group Facebook Page.
She also suggested watching a documentary called “My Kid is Not Crazy” which can be found for free on Amazon Prime Video.
The documentary follows six children and their families as they struggle through a medical system that sometimes doesn’t believe the disorder exists.