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Tom Cullerton raises PANDAS awareness

TC032415SPRINGFIELD- Charlie was just like any other 9-year old. He was an active gymnast who loved going to school.

And then his mother says her little boy changed.  She started noticing Charlie didn’t enjoy school like he did before and had a hard time balancing in gymnastic class.  

Charlie’s mother researched her son’s symptoms on her own to find that Charlie’s symptoms were similar to Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). 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, motor tics that appear similar to seizures, hallucinations and new found fears such as fear of water to the point children are afraid to brush their death or bathe. The symptoms are severe enough to prevent children from attending school.

The unusual behavior was just the beginning. Charlie was afraid of going to school and had a hard time writing his name.  It took months to get a diagnosis.

To raise awareness and educate medical professionals, State Senator Tom Cullerton (D-Villa Park) advanced 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.

“As a father of three young boys, I understand the importance of educating medical professionals and the general public on the symptoms caused by PANDAS,” said Cullerton. “We need to find ways for early diagnosis to prevent families like Charlie’s from living months without answers. The earlier we detect these signs of PANDAS, the quicker we can begin treatment.”

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

“The biggest problem families face is the fact our medical professionals aren’t fully versed on diagnosis or treatment of PANDAS,” said Wendy Nawara, Executive Director of PANDAS/PITAND/PANS Advocacy and Support of Illinois and Charlie’s mother. “This initiative brings us one step closer to raising PANDAS awareness and training our medical professionals to pick-up on symptoms earlier.”

Senate Bill 1684 passed the Senate’s Committee on Public Health and now moves to the full Senate for consideration.