NASHVILLE, Tenn. (WSMV) – A little-understood disease could be affecting as many as 1 in 200 children in the United States and research suggests it often goes misdiagnosed. PANS, the acronym for Pediatric Acute-Onset Neuropsychiatric Syndrome, is a disease in children that occurs after repeated infections, most commonly strep.
“Lucca got strep 15 times in four years,” said Kristi Giacco of Mt. Juliet.
She said her son Lucca, 10, first developed symptoms of the disease in the summer of 2022.
Giacco describes a litany of disconcerting behaviors that started suddenly for her then-8-year old son, including facials tics, extreme separation anxiety, OCD, aggression and unfounded fears of being alone.
When the behaviors first started, his teachers commented that his processing time had suddenly slowed. Kristi had Lucca evaluated by a neuropsychologist and psychiatrist NP trying to uncover how to help him.
“As a mom, to watch your kid –who is normal– who is an amazing athlete, to just change overnight,” Kristi said. “It’s hard.”
Lucca was initially diagnosed with ADHD and prescribed anti-depressants, but Kristi felt intuitively he had been misdiagnosed and something more serious was wrong.
“He said ‘I don’t know why I’m doing this, my brain is making me do this. I can’t control it,’” Kristi said.
Lucca’s mental health deteriorated so rapidly that Kristi took FMLA from work. For months, Kristi spent her time caring for Lucca and researching what was potentially the cause.
In 2023, Kristi found a pediatric neurologist in Washington D.C. who agreed to evaluate Lucca. Through Dr. Elizabeth Latimer, considered one of the few PANS specialists in the world, Lucca was then diagnosed with the strep-related counterpart to PANS, known as PANDAS.
Understanding PANS and PANDAS
PANS and PANDAS come with severe symptoms that are usually characterized by sudden and intense changes in behavior: onset of OCD, aggression, tics, hallucinations, deterioration of motor skills, and sleep troubles.
PANDAS was the disease behind the abrupt change in Lucca’s behavior.
The diseases are a group of auto-immune, auto-inflammatory disorders that affect a child’s central nervous system. The disease occurs when the body incorrectly attacks healthy brain tissue, which triggers neurological or psychiatric symptoms.
The diseases primarily affect the basal ganglia, a group of inter-connected structures in the brain tasked with regulating functions like motor skills, emotional response and procedural learning.
WATCH: How PANDAS affects a child’s brain
Repeated exposure to diseases, such as strep, cause the body to launch an immune response against the infection. The body produces anti-bodies, but in certain people, it leads to the production of abnormal antibodies known as auto-antibodies which attack the person’s own healthy brain cells.
It’s not fully understood how those auto-antibodies enter the brain, but recent research in mice and the brains of PANDAS children points to entrance through the mucus membrane of the upper nasal cavity. Researchers posit the auto-antibodies may travel along the olfactory nerves in the nasal cavity that sense smells. They break through the Blood-brain barrier (BBB) where they attack neurons in the basal ganglia that affect movement and mood.
The result is progressive brain damage, which Lucca has experienced.
Lucca’s treatment plan
The initial treatment plan for Lucca included taking constant antibiotics and steroids to decrease the inflammation on his brain. Lucca experienced limited improvement with the plan, which meant his doctor advised a more intense step: an infusion treatment called intravenous immune globulin, known as IVIG.
IVIG is a two-day treatment, for six hours each day, where a concentrated dose of antibodies collected from the donated blood of thousands of people was pumped into Lucca’s body, intravenously. It floods the body with antibodies to fight infection.
Lucca did his first round of IVIG in April 2023, and the result was great improvements in his focus, a decrease in his anxiety and a near-elimination in all tics. Lucca even scored in the 95th percentile in August 2023 for a statewide reading exam – at the start of his 4th grade year.
“The reality is I know [the treatment] works,” Kristi said. “This treatment is so critically necessary and you can’t imagine the number of moms I talk to every single day that can’t afford it.”
The family’s insurance fight
Kristi has done more than help Lucca fight the disease. She’s also been fighting the insurance companies for coverage of his treatment. The Giaccos have been denied coverage twice and are currently on their second appeal.
“I’ve spent hundreds of hours on the phone with insurance,” said Kristi. “I know why people give up because I’ve gotten nowhere!”
Kristi says she has spent upwards of $30,000 out-of-pocket for Lucca’s treatment because insurance continues to deny its necessity.
IVIG is typically used to treat patients experiencing leukemia, transplant-related infections, Guillain Barré Syndrome, HIV, and multiple sclerosis – among other severe diseases. But researchers through Columbia University are currently studying the impact IVIG has on 200 PANDAS children. Lucca is one of them.
“If insurance doesn’t pay for it, I have no other choice, he needs to do IVIG again,” said Kristi. “I would do anything I could to save my children.”
Taking her fight to the legislature
A sentence in the second insurance coverage denial letter sent to Kristi reads “all decisions are made following applicable state and federal law.”
It was enough to incite Kristi’s attempt to secure a healthcare mandate in Tennessee that would require state and private insurance to cover treatment for PANS and PANDAS based on a doctor’s prescription.
Kristi is now working with her state representative, Rep. Susan Lynn (Mt. Juliet – R), to introduce three new pieces of legislation in the 2024 legislative session that began January 9.
“Hopefully we can get TennCare to cover it,” says Rep. Lynn. “The other thing is we have a mandate bill for insurance to pay for this.”
The third piece of legislation is a proclamation naming October 9, PANDAS Awareness Day. The Giaccos worked with Lynn last year to pass the the same proclamation, which received Governor Bill Lee’s signature. The process to give certain meaning to a day must recur annually.
“I want insurance companies to look at this and see there is a treatment,” says Rep. Lynn. “It doesn’t have to be life-long anti-depressants for someone.”
Currently, eight states have healthcare mandates requiring coverage of PANS and PANDAS. Three other states have the proposals under review. If the two bills from Lynn pass, Tennessee would become the ninth state with mandates.
What’s next for Lucca
The Giaccos have begun to see a neurological decline in Lucca as he waits for his second IVIG treatment. The change is evident in his state iReady score which showed a slide from 95th percentile to 61st percentile in the reading exam taken four months later.
Kristi is currently planning when she will make the next trip to Washington D.C., which will come entirely out-of-pocket.
“We need Tennessee on board. We need these legislators on board because the kids did not ask to be sick,” says Kristi. “My son did NOT ask for this!
Copyright 2024 WSMV. All rights reserved.
Clinton Mora is a reporter for Trending Insurance News. He has previously worked for the Forbes. As a contributor to Trending Insurance News, Clinton covers emerging a wide range of property and casualty insurance related stories.