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Assemblyman Jones’ Bill Passes Assembly

Assemblyman Billy Jones (D-Chateaugay) announced a bill he introduced that would increase awareness about a syndrome affecting children has passed the Assembly. The measure would add pediatric acute-onset neuropsychiatric syndrome (PANS) to the state’s health care and wellness education and outreach program (A.7614).

“As a parent, few things are more heart-wrenching than seeing our children unwell and not knowing what’s wrong,” said Jones. “This legislation will help families in the North Country get the diagnosis and treatment they need before it’s too late.”

Jones became aware of PANS after speaking with a local family that is working to overcome the disease and increase awareness. The syndrome causes inflammation on a child’s brain, resulting in a variety of symptoms, including the sudden onset of obsessive-compulsive disorder, severe restrictive eating, a marked decline in math and handwriting abilities, sensory sensitivities, tics, personality changes and anxiety.[1]Because of the variety of symptoms, many of them behavioral, PANS is often misdiagnosed. If an infection is present, PANS children may respond well to antibiotic treatment, if done in a timely manner.[2] That’s why educating parents and health care professionals is so critical, noted Jones.

“Pediatric Acute-onset Neuropsychiatric Syndrome turned our lives upside-down,” said Laura Carmichael, a mother from Plattsburgh whose son was diagnosed with PANS. “We went to almost a dozen doctors before figuring out what was causing my son’s regression and psychiatric symptoms. This legislation will help raise awareness of the disorder, so other families will get a faster diagnosis and appropriate treatment. My family and I are incredibly grateful to Assemblyman Jones and State Senator Betty Little for sponsoring this bill.”

With the bill’s passage, it now moves onto the Senate, where Senator Betty Little is the sponsor. Both Jones and Little hope the bill will soon pass in the Senate and then be signed into law by the Governor.

“I went to Albany to fight for our families,” said Jones. “This bill helps protect children so they can grow up and lead the way to a stronger North Country.”

 

Comments

Comment from Gabriella True
Time May 24, 2017 at 5:52 pm

Thank so much Assemblyman Bill Jones and State Senator Betty Little! Thank you for supporting children and families with PANS/ PANDAS. Awareness and Understanding are crucial step in ensuring these children are identified and treated quickly. – Gabriella True, http://www.NEPANS.org

Comment from Pat Gillule
Time May 24, 2017 at 9:45 pm

I am so grateful for this! As a mom to a daughter who made a full recovery from PANS due to quick antibiotic treatment, I cannot thank you enough! Your efforts will change lives and make a world of difference.

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