Iowa Parents Work on Bill to Mandate Insurance Coverage for PANDAS and PANS Treatment

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PLEASANT HILL, Iowa – We're hearing more about an autoimmune disorder as parents share how PANDAS and PANS changed their children overnight.

PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. PANS stands for pediatric acute-onset neuropsychiatric syndrome.

The symptoms come on suddenly and can often be misdiagnosed as a mental illness and prescribed medication for that.

Isabella Noble is in sixth grade and deals with a debilitating disorder that came on suddenly. "I was always a happy girl, never really sad, and then just overnight I became really sad."

Mom Jodi Noble added, "She started acting completely different, had irrational fears. She was afraid someone was going to break into the house and kill us all."

Isabella was diagnosed with PANDAS and PANS five years ago after visiting her pediatrician. "He looked at her and looked at her eyes. He said I just have to rule something out, and thank goodness he did that because he referred us on to a specialist," said Jodi.

She's been on antibiotics most of the time since. "She was taken off of it probably about five weeks and got strep right away and symptoms came back," said Jodi.

This summer, her 8-year-old sister Emilie suddenly changed, too. "All of a sudden I just started feeling depressed. I thought all these sad thoughts, like why was I even alive and all I do is cry," said Emilie.

Her mom also noticed obsessive compulsive symptoms similar to what her sister experienced and pushed for the doctor to consider PANDAS and PANS.  Jodi said, "The parents are really the advocates here. We have a PANDAS Iowa network and a national network, and that is where we are learning so much, saying go to these doctors, have them order these tests. We're the ones kind of guiding the way.”

Nearly 200 people are members of the online Iowa PANDAS Support Group. Members raised $5,000 to provide education materials for educators and school nurses and continuing education resources for physicians.

They are also working on a bill with lawmakers to get an expensive treatment called IVIG covered by insurance. “It ranges anywhere from $5,000 to $10,000 to $20,000,” said Jenna Nelson, with Iowa PANDAS Support Group.

"The IVIG helps train their body in order to learn how to fight. It trains their immune system to respond appropriately compared to how it's responding right now, which it's not really responding correctly," she said.

The Noble sisters are back to feeling more like themselves now and hope sharing their story will help others. "It's easier to talk about PANDAS now because I've been through it," said Isabella.

Senate Bill SF2301, which would mandate insurance coverage for PANDAS and PANS, made it through the Human Resource Committee. It is now set to be brought up in the Senate, possibly this week.

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