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PANDAS

  • Tom Cullerton works to promote PANDAS

    tc panda 050317SPRINGFIELD- State Senator Tom Cullerton (D-Villa Park) is continuing his work to raise awareness for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) by designating October 9 of 2017 and 2018 as PANS, PANDAS and PITAND Awareness Day in the State of Illinois.

    “Education is essential to early diagnosis of PANDAS,” said Cullerton. “No one wants to see children suffer. The faster we diagnose children affected by PANDAS, the quicker we can begin treatment.”

    Charlie woke up on eighth his birthday with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).

    The little boy who once loved performing in talent shows and putting on skits was now scared of crowds and talking to his friends. There was an immediate change in his personality.

    PANDAS is characterized by a sudden onset of symptoms associated with Obsessive Compulsive Disorder, Tourette’s Syndrome and other tics after a child has had a strep infection. Symptoms range from severe separation anxiety to motor tics that appear similar to seizures and hallucinations. The symptoms are severe enough to prevent children from attending school.

    After two months of looking for answers, a doctor diagnosed Charlie with PANDAS.

    After observing Charlie, his mother Kate Drury, Vice President of PANDAS/PANS Advocacy & Support, was quickly able to recognize her younger son had PANDAS when he displayed early symptoms.

    Cullerton first became aware of PANDAS after meeting with the group formed by Drury and other mothers whose children have suffered from PANDAS. He pledges to continue to work to raise awareness and support to help children like Charlie.

    “As a parent, it's so hard to watch your child completely deteriorate in front of your eyes. You go to the doctor, get a diagnosis, and then are unable to access the treatment that doctor prescribes. The biggest problem we continue to face is that our families cannot rely on their insurance plans to cover the doctor recommended, medically necessary care our children require,” said Wendy Nawara, Executive Director of PANDAS/PANS Advocacy & Support. “This treatment gives our kids their lives back. Why do we even haven health insurance if it won't help us help our children? ”

    Cullerton commends the advocacy the group continues to do on behalf of the children of Illinois.

    PANDAS can potentially be a lifelong disease that is estimated to affect nearly 175,000 children and adolescents in Illinois. It has even been found in adults.

    Senate Resolution 454 passed the Senate with bipartisan support.

  • Tom Cullerton fights to ensure insurance companies cover costs for children’s healthcare

    tc 062717SPRINGFIELD—Children may soon no longer be denied treatment for PANDAS disease, thanks to Villa Park Democratic State Senator Tom Cullerton. 

    Cullerton’s lifesaving initiative that will require Insurance companies to offer coverage for treatments of PANDAS — Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections — passed the House and Senate with bipartisan support. 

    Cullerton has been working with the group PANDAS/PANS Advocacy for the last four years to raise awareness and require insurance companies to cover the cost of treatment for this fairly unknown disease that affects approximately 1 in 2,000 children throughout the United States.

    “As the father of three young sons, I know as a parent you do whatever you can to protect your children from unnecessary pain,” Cullerton said. “I have been honored to work with these incredible advocates from PANDAS/PANS Advocacy, to support Illinois’ children in receiving essential treatment and raising awareness of this tormenting disease.”

    Cullerton first became aware of PANDAS four years ago after meeting with the group formed by Executive Director Wendy Nawara and Vice President Kate Drury of PANDAS/PANS Advocacy & Support, whose children have suffered from PANDAS to raise awareness of symptoms and to require insurance companies to cover the cost of treatment for this fairly unknown illness.

    PANDAS and PANS is the result of an abnormal immune response to common infections such as strep throat, walking pneumonia, mononucleosis and other similar infections.

    Drury saw a drastic change in her son Charlie overnight, who once loved performing in talent shows and putting on skits. He woke up on his 8th birthday scared of crowds and of talking to his friends.

    After two months of looking for answers, a doctor diagnosed Charlie with PANDAS. Insurance companies didn’t cover the cost for his treatment, which can run upwards of $12,000 in hospital bills.  

    “As a parent, it is so hard to watch your child completely deteriorate in front of your eyes. You go to the doctor, get a diagnosis, and then are unable to access the treatment that doctor prescribes. The biggest problem our families have faced is that we've not been able to rely on our insurance plans to cover the doctor recommended, medically necessary care required,” said Nawara.  “This treatment gives our kids their lives back. We have needed this for a long time. Our families are so grateful that Illinois is taking these steps to help us."

    HB 2721 will provide that all individual and group plans of accident and health insurance must offer coverage for treatment PANDAS and PANS. Once this measure is signed into law it will be known as “Charlie’s Law.”

    Symptoms range from severe separation anxiety to motor tics that appear similar to seizures and hallucinations. There is a drastic change in behavior that often becomes severe enough to prevent children from attending school, not completing basic tasks like taking a shower or accepting a hug from their loved ones and avoiding extracurricular activities due to social anxiety.

    Cullerton pledges to continue to work to raise awareness and support to help children like Charlie.

    “There are effective treatments for children inflicted with PANDAS and PANS,” Cullerton said. “It’s common sense to make sure there is treatment readily available to quickly treat children inflicted with PANDAS without loading Illinois’ parents with mountains of debt.”

    House Bill 2721 now moves to the governor’s desk for consideration.  Cullerton is hopeful the governor will approve this measure.

  • Tom Cullerton’s lifesaving PANDAS measure signed into law

    TCullerton PANDAS signed

  • Tom Cullerton’s PANDAS initiative signed into law

    Tom Cullerton's PANDAS initiative signed into lawSPRINGFIELD - Vital legislation to raise awareness on Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) was signed into law today.

    PANDAS is characterized by a sudden onset of symptoms associated with Obsessive Compulsive Disorder, Tourette’s Syndrome and other tics after a child has had a strep infection. Symptoms range from severe separation anxiety to motor tics that appear similar to seizures and hallucinations. The symptoms are severe enough to prevent children from attending school.

    To raise awareness and educate medical professionals, State Senator Tom Cullerton (D-Villa Park) passed a measure to create an advisory council to make recommendations to the Illinois Department of Public Health on awareness and education among doctors, school-based health centers and mental health providers.