Contact: Laurence Grotheer
March 1, 2013
State Senator Joseph J. Crisco, Jr. (D-Woodbridge) and Rep. Robert Megna (D-New Haven), co-chairs of the legislature’s Insurance and Real Estate Committee, today convened an informational forum on emerging, alarming new autoimmune disorders called Pediatric Acute Neuropsychiatric Syndrom (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS).
A conservatively estimated 165,000 children are afflicted with this condition in the United States; most cases are said to be misdiagnosed and symptoms treated with strong psychiatric drugs, when simple antibiotics would often be more effective.
“Once thought of as a post infectious illness linked only to streptococcus bacteria, it is now known to have a variety of root causes, including . . . mononucleosis, walking pneumonia, and Lyme disease,” according to the PANDAS Resource Network. “Almost any assault on the immune system . . . can trigger unwelcome overnight psychiatric symptoms in children.”
“The abundance of clinical evidence we heard and combined with heart-wrenching personal accounts from so many family members of PANDAS patients, describing the effects of this devastating disorder, would certainly seem to warrant a policy response from the General Assembly,” Senator Crisco said. “Last year we enacted law compelling a formal study of this autoimmune malfunction; this year there are three additional bills under consideration to enhance our state’s effort to help the afflicted.”
“I’m grateful to all the advocates—some of whom traveled from other states—for providing so much helpful information and testimony on this emerging issue,” Rep. Megna said. “I am struck by the fact that efforts to assist PANDAS patients and their families are further hampered by the lack of even a formal diagnostic code for the condition, as of yet.”
“Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, also known as PANDAS, is a sudden and debilitating disorder affecting children,” said State Senator Kevin Witkos (R-Canton). “Overnight, a child can change behavior, often leaving them unable to speak or walk. Far too often, children are misdiagnosed or mistreated simply because there is not enough awareness that the symptoms are PANDAS and not a mental health issue. If we can reach out to parents, doctors, school nurses and others who see children every day, we can have a positive impact to help them recover and return to happy and healthy lives through a simple treatment of antibiotics or a more serious treatment known as an IVIG. Families should not have to suffer through uncertainty and thinking that they are all alone, and we have the opportunity to establish our state as a national leader when it comes to health care and awareness of this disorder simply through advocacy.”
“In (this disorder), antibodies created to fight an . . . infection become misdirected against a small area of the brain . . . . This autoimmune reaction results in a host of neuropsychiatric symptoms that are both difficult to endure and difficult to manage,” explained Dr. Denis Bouboulis, the medical advisory board director for the PANDAS Resource Network. “Frequently PANDAS/PANS has an extremely sudden onset: one day these children are perfectly normal, and the next day they may suddenly be unable to get out of bed without performing innumerable rituals.”
“It is our responsibility to seize every opportunity to prevent the devastating effects of mental and neurological illnesses,” said Dr. Robert C. Bransfield, the president of the International Lyme and Associated Diseases Educational Foundation. “It is important to advance awareness for the public, physicians, and educators; to support clinically relevant research; to develop early intervention strategies; to create plans to deal with insurance company and other obstacles to access to care and to develop an effective advisory committee.”
“To begin mitigating all the human and financial costs of PANDAS/PANS several steps should be taken—it is imperative that research and awareness into this disorder take place simultaneously,” according to Lynn Johnson, Executive Director of the PANDAS Resource Network. “These include development of clinical awareness programs for physicians and the public, development of effective epidemiological studies within the state of Connecticut, and development of outcome studies of clinical intervention strategies.”
“I am encouraged by the bipartisan support our legislative initiatives have received, both in our committee and in the Public Health Committee as well,” Senator Crisco added. “We will continue working to raise awareness about this vexing disorder so public policy in Connecticut reflects the very serious nature of PANS and PANDAS.”
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Hartford, CT 06106-1591
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