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State Senate Approves Measure to Raise ‘PANS’ Awareness

From the Office of State Senator Betty Little
Would help combat neuropsychiatric syndrome affecting children

The State Senate today gave final legislative approval of legislation (S5750) sponsored by Senator Betty Little to raise awareness of pediatric acute-onset neuropsychiatric syndrome, known as PANS.

“PANS attacks the brain. It comes on quickly and can be challenging to diagnose,” said Little. “Developing a better understanding of the syndrome and what to look for to ensure the right diagnosis is made quickly will no doubt assure better results for children, including adolescents.”

The legislation directs the New York State Department of Health to include PANS in its Health Care and Wellness Education and Outreach Program. An advisory council comprising representatives of people with PANS, including family members, and health care providers who specialize in treating the syndrome, would focus on increasing awareness and early detection of the illness through education.

PANS is a misdirected immune response, often with an encephalitic onset, which negatively affects neurologic functioning, resulting in a rapid, acute onset of Obsessive Compulsive Disorder (OCD), restricted food intake or tics, along with other neuropsychiatric conditions.

Little sponsored the legislation after hearing from a constituent whose child was diagnosed with PANS.

Laura Carmichael of Plattsburgh said: “My son has been suffering from PANS for many years, but was not diagnosed until recently. After calling Senator Little’s office and telling them our story and the stories of other families, this bill was drafted. Senator Little and her staff have been absolutely wonderful. Their efforts will help children receive an early diagnosis and proper treatment, leading to a much better outcome.”

Valerie Jacox Mlynar of Bedford, a member of the NY PANS/PANDAS Advocacy Team along with Carmichael, said: “I almost lost my child to Pediatric Acute-Onset Neuropsychiatric Syndrome. We went to over 20 doctors of various specialties before finding one who understood PANS and whom my family believes saved our child’s life. We are hopeful that this bill will help raise awareness so that other children and families can get help much sooner and won’t have to suffer nearly as much as our family has. We are beyond grateful to Assemblyman Jones and State Senator Betty Little, and all of the Senate and Assembly members, for sponsoring this bill.”

The National Institute of Mental Health notes PANS is a treatable autoimmune condition that can be triggered by numerous infections, including the bacteria that causes Lyme disease, herpes simplex, influenza and other viruses. Symptoms often begin to improve within one week of antibiotic treatment. If treated promptly and thoroughly, symptoms can remit completely.

“As parents, nothing is more important than our children’s wellness,” said Little. “When something is wrong, we want to know what it is and how to address it. By increasing our knowledge of PANS everyone benefits, the medical community, including mental health practitioners, parents and, most importantly, children.”

Companion legislation sponsored by North Country Assemblyman Billy Jones passed the State Assembly on May 24. The bill will be returned from the Senate to the Assembly before being sent to the governor for his consideration.

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