Concerned Kansas parents push for new bill for life-changing condition
TOPEKA, Kan. (KSNT) -- Concerned parents met with lawmakers at the Kansas state capitol on Monday, to push for new legislation on a rare condition. It's called PANS/PANDAS, and it's a condition with life-changing effects.
"We didn't even know what it was to begin with," said Andi Bonge, an occupational therapist, whose daughter developed the illness. "It started off with the mother of all tantrums with a child that was, normally, very easy-going, and very sunny disposition. And, her symptoms just got worse and multiplied over several years."
PANS/PANDAS is usually caused by an underlying infection that can trigger brain inflammation. It requires Intravenous immunoglobulin (IVIG) treatment to help the body produce antibodies that it can't make on its own. As Bonge's daughter's condition continued to worsen, it became hard to find coverage for treatment, and keep up with payments. So far, her family has spent about $100,000 in treatment for PANS/PANDAS.
"Children that are suffering with this disorder aren't going to get the proper diagnosis and treatments, simply because they don't have the proper finances or education to advocate for themselves or their children, and because most primary care physicians or pediatricians are not educated on it, so they will go on for years doing therapies and psychiatric medications, when really there's an underlying infection," Bonge said.
Mary Musselman, an organizer for the hearing, who's spent several years advocating for PANS/PANDAS awareness with her son, Luke, who has the disorder, said she felt lost during the first sign of symptoms. For Luke, it started with similar symptoms to other disorders, like OCD, ADHD, and serious anxiety.
"There were so many late nights of me staying up trying to scour on the internet looking up what it could be," Musselman said. "All I know was Luke was not Luke anymore. He was debilitated, he couldn't get to school. He was having OCD rituals."
Musselman knew her child had something more severe when he started experiencing slight ticks, or behavior changes that were out of character.
After spending years trying to figure out what was wrong, his condition got worse. Now, she’s paying for treatments that cost nearly $13,000.
Catching symptoms of PANS/PANDAS early can help save a child's life, and it's one of the main things discussed in the hearing today. Parents are hoping for a new bill that includes education on pans/pandas for upcoming healthcare workers to help provide effective treatment.
Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, can be caused by a variety of different infections, whereas PANDAS is a disorder associated with only streptococcal infections—specifically group A strep. Although PANS is different from PANDAS the symptom presentation is almost identical. According to the PANDAS Network, 1 in 200 children in the U.S. have the illness, and symptoms of PANS/PANDAS include the following:
- Sudden obsessive or compulsive behavior, and/or ticks
- Eating challenges or changes in eating patterns, like food restriction
- Sensitivity to clothes, sound, and light
- Intense irritability and/or tantrums
- Attention and memory difficulties
- Sudden separation anxiety
- New fears or phobias
- Intense generalized worries and/or panic
- Deterioration of motor skills such as handwriting
- Urinary frequency or bedwetting
- Restless or unusual body movements