For Dan and Shaina Janeda, their daughter Macy was the kind of kid who could make almost anyone laugh.
The 10-year-old from Pennsylvania’s South Hills played softball, joked around with her older sister and was known by her friends for being energetic and fun to be around.
Then, after a strep throat infection, everything changed.
Within days, Macy began experiencing severe tics, obsessive-compulsive symptoms and dramatic changes in her behavior. Her parents said they went from watching an outgoing child enjoy school and sports to struggling to recognize the daughter they knew.
The family eventually received a PANDAS diagnosis, but getting treatment has brought another challenge: paying for care that can cost thousands of dollars each month.
Now, Macy’s story has become part of a broader push in Pennsylvania to better understand PANDAS and PANS and examine whether families should have stronger access to diagnosis and treatment.
A sudden and frightening change
Macy’s symptoms appeared roughly 10 days after she was diagnosed with strep throat, according to her family.
Her father, Dan, recorded video during one particularly difficult episode. In the video, Macy is seen in a wheelchair, experiencing involuntary movements and struggling with ordinary tasks such as holding a fork. Her parents also noticed oral behaviors, developmental regression and other changes that were completely unlike their daughter.
Shaina said the transformation was so sudden that she felt as though she no longer recognized her child.
The family began searching for answers and noticed that several of Macy’s symptoms — including the sudden onset of obsessive-compulsive behavior and tics — could fit PANDAS.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is considered part of the broader PANS spectrum, which involves sudden-onset neuropsychiatric symptoms in children.
The American Academy of Pediatrics published a clinical report on PANS in 2025, noting that the condition can be difficult to diagnose because there is no disease-specific biomarker and the evidence surrounding its causes and treatments remains limited. The report describes PANDAS as a subset of PANS associated specifically with streptococcal infection.
Finding a doctor became another challenge
For the Janeda family, getting a diagnosis did not immediately solve the problem.
They said they struggled to find doctors willing to evaluate Macy specifically for PANDAS. Eventually, the family sought care outside its insurance network and found a pediatrician through a network of physicians familiar with the condition.
That search reflects one of the larger problems now being examined in Pennsylvania: access to providers who have experience evaluating children with sudden and severe neuropsychiatric symptoms.
The state’s new legislative study is expected to examine the number of health care professionals treating PANS and PANDAS, potential misdiagnoses, access to treatment and the availability of insurance coverage.
The treatment that helped Macy get back to school
For Macy’s family, intravenous immunoglobulin, commonly called IVIG or IGIV, has made a noticeable difference.
IVIG is delivered through an infusion and contains antibodies collected from donated blood plasma. Macy’s father told investigators that the treatment helped his daughter return to school and eventually get back on the softball field.
But the treatment comes with a major financial burden.
The family said Macy’s IVIG treatment costs about $11,000 a month. After she moved onto Medicaid, they said coverage for the treatment was denied on the grounds that it was not considered medically necessary, leaving the family unable to simply pay the pharmacy out of pocket.
The medical evidence surrounding IVIG for PANS and PANDAS remains an important part of the debate. The American Academy of Pediatrics says evidence for immunomodulatory treatments such as IVIG is inconclusive and describes these therapies as controversial. Its 2025 report recommends that invasive immunotherapies be considered only in rare cases and after evaluation by specialists experienced with these conditions.
At the same time, the AAP report notes that several states have enacted laws requiring some insurance coverage for IVIG for children with PANS or PANDAS.
That difference in state policies is now one of the issues Pennsylvania lawmakers want to examine.
Pennsylvania lawmakers are taking a closer look
State Rep. Jill Cooper, a Westmoreland County Republican, became involved after hearing from families struggling to find answers and obtain treatment for children with PANS and PANDAS.
Cooper introduced House Resolution 528, which calls for the Joint State Government Commission to conduct a comprehensive study of the disorders.
The Pennsylvania House adopted the resolution on June 30 by a vote of 201-1. The study is designed to examine insurance practices, available state resources, provider capacity, possible misdiagnoses and policies in other states.
The Joint State Government Commission’s current projects list now includes the PANS and PANDAS study. The commission is expected to develop findings and recommendations that could help inform future policy decisions in Pennsylvania.
The resolution also calls for the commission to look specifically at which insurers cover PANS and PANDAS treatments, including diagnostic services, antibiotics, anti-inflammatory medications and immunomodulatory therapies such as IVIG.
Why the diagnosis can be complicated
PANS and PANDAS can present with symptoms that overlap with other neurological, behavioral and psychiatric conditions.
The AAP says children with possible PANS should receive a careful evaluation because the sudden onset of severe symptoms can have multiple possible causes. The organization recommends a cautious, evidence-based approach and care coordinated among appropriate specialists.
That uncertainty is part of what makes cases like Macy’s difficult for families.
Parents may see a child change dramatically over a very short period, while doctors must consider infections, neurological conditions, psychiatric disorders and other possible explanations before determining what is happening.
For the Janedas, the process meant repeated appointments, searching for specialized care and eventually dealing with an insurance dispute over treatment that they believe has helped their daughter regain parts of her old life.
A study could shape what happens next
Pennsylvania’s new study does not immediately create an insurance mandate for PANS or PANDAS. Instead, it is intended to gather information that lawmakers can use when considering possible future legislation or policy changes.
The resolution directs the commission to examine how other states handle insurance coverage, provider education, awareness efforts and access to care. It also calls for recommendations on improving diagnosis, treatment access and support for Pennsylvania families.
For Macy’s parents, that work is about more than their own daughter.
They want other families who suddenly find themselves facing unexplained tics, obsessive behaviors or dramatic behavioral changes after an infection to have a clearer path to medical care.
Macy’s family says they want Pennsylvania to recognize the financial and medical challenges families can face when a child develops a condition that remains difficult to diagnose and whose treatment options are still being studied.
For now, the Janedas are continuing to fight for access to the care they believe has helped Macy return to school, softball and more of the personality her family remembers.
