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Local mom, health experts on advisory council for often misdiagnosed syndrome

Kara Chasteen

Bertram resident Kara Chasteen (center) holds proclamation establishing the Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council. State Rep. Terry Wilson (left) and state Sen. Dawn Buckingham each introduced bills for the creation of the advisory council that were passed during the 86th Legislature. Courtesy photo

Bertram resident Kara Chasteen isn’t a scientist or doctor, but she’s more than qualified to serve on the newly created Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council. Her son, Clay, was diagnosed with PANS.

Chasteen along with Sarah Garrett, the executive director and founder of the Phoenix Center, and Dr. Amy Offutt, owner and medical director of Heart and Soul Integrative Medicine in Marble Falls, are three of 14 Texans now serving on the council and offering insight to state health and legislature leaders on research, diagnosis, treatment, and education regarding pediatric acute-onset neuropsychiatric syndrome.

The council appointments came from Gov. Greg Abbott and were announced April 13. Terms are set to expire on August 31, 2021.

It took several hospital and doctor’s office visits to correctly identify what was ailing Chasteen’s son.

“I’m a mad mother,” she said. “That’s what led me to this. My child almost died from this. The issue is the way the medical community treats it. They don’t recognize it. It presents as a mental issue. It’s an infection on the brain.”

PANS and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection (PANDAS) are infection-induced autoimmune conditions that interrupt a patient’s normal neurologic function. Both are connected with infection-triggered autoimmune responses known as “molecular mimicry,” which happens when the body’s immune system mistakenly attacks normal body tissue because of the structural similarities between a particular molecule on an infectious agent and the molecules in body tissue.

In PANS and PANDAS, researchers believe antibodies are prompted to attack the basal ganglia, the part of the brain associated with movement and behavior.

PANS was originally thought to be the result of streptococcus infection, such as strep throat, but researchers are finding that symptoms can be triggered by other infections, including chickenpox, flu, mycoplasma, and Lyme disease, according to reports.

Suddenly, sufferers begin displaying obsessive compulsive disorder and/or motor tics.

Individuals with PANS or PANDAS may suffer severe irritation, mood swings, anxiety, or uncontrollable movements that can result in sleeping and urinary issues and not being hungry.   

Those reactions, Offutt said, are why some in the medical field prescribe medication that deals with moods or emotions or advise psychiatric treatment.

That’s what happened to the Chasteens, but Kara wouldn’t accept it.

“I knew when he got sick, he was not mentally ill,” she said. “That doesn’t run in our family. He’s never been upset about anything in his life.”

As a result, the family sought Offutt’s help. Together, they examined symptoms and looked through medical reports to zero in on what it could be.

And Kara would not give up.

“It was a blessing because it happened to the right person,” Offutt said. “It was a group effort to get him well.”

Mold issues and Lyme disease, not strep throat, were the culprits for the Chasteen family.

Because of the challenge of getting the proper diagnosis, Chasteen said she followed state Rep. Terry Wilson for two years to tell him of her experience. Meanwhile, she became an authority for other parents struggling to find medical help.

Some had adult children in group homes because they were told it was a mental disorder or because the drugs given to them caused brain damage, she said.

She noted a student who kept clearing his throat in class, which got him into trouble with his teacher. His parents sought medical help, and he was diagnosed with PANS.

“It’s a horrific disease that needs to be researched,” Chasteen said. “I want people to know there are several indicators, and a lot of kids are misdiagnosed with issues. It’s not a wimp’s disease.”

Last year, the work paid off. Wilson and state Sen. Dawn Buckingham each introduced bills during the 86th Legislature calling for the creation of the advisory council on which Chasteen, Garrett, and Offutt are serving. 

The council’s role is to help educate, create documents, and spread awareness of PANS and PANDAS within the medical field, government, and community.

As state officials began looking for qualified people to serve, Chasteen and Offutt were no-brainers. Garrett agreed to serve when Offutt recommended her.

“I’m happy to be a part of it. I’m excited to be a part of it,” Offutt said. “I’m going to give all that credit to Kara. Kara is the driving force behind it.”

Other families, especially those living in the Highland Lakes, have visited with Chasteen and Offutt about their children to see if PANS is the source of the issue. More than 20 children in the region were diagnosed with PANS and received treatment.

“Dr. Offutt has saved these kids,” Chasteen said. “She’s a specialist.”

Kara said her son is living the life she envisioned he would when he was born. He graduated from college and has a job. He also hasn’t been shy about recommending his mother to people whose children are displaying some of the symptoms he had.

“It’s a mama bear syndrome,” she said. “They know they can text me. It’s hard on the parents. You do what you have to do to get your kid back.”

Offutt said she is honored to serve on the council and wants to help families get their peace of mind and children back to where they were.

“I feel like I can stick up for them,” she said. “I feel called to stick up for them and help them get out of this situation. To see kids come out of it and feel good, they feel a sense of optimism and know they don’t have to stay on those medicines.”

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