“A Mother’s Mission to Make Doctors LOOK: Turning a PANDAS diagnosis into advocacy.” Written By Kelly Newton for Greet Hingham

A Mother’s Mission to Make Doctors LOOK: Turning a PANDAS diagnosis into advocacy

Kelly Newton
Look. Foundation Board Member

When my child began to suffer, doctors told me to wait—that he would eventually “grow out of it.” But as a parent, you know the difference between a phase and a true need for help. What followed was a long, desperate fight to uncover the root cause of my child’s increasing behavioral and mental health symptoms following a strep infection.

That journey eventually led us to a diagnosis of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (more commonly referred to as PANDAS). It was a discovery that saved my son, but it also opened my eyes to how many other families are still wandering in the dark. Today, I don’t share our story because I have all the answers; I share it because no family should have to fight this battle alone.

The Invisible Struggle

Our journey included a seemingly endless stream of doctor appointments, including pulling our child out of school to travel out of state Monday through Friday for ten weeks for symptom management. While I won’t include our specific symptoms, in general symptoms can include: motor/vocal tics, the onset of obsessive compulsive disorder, severe separation anxiety, mood swings, irritability, eating restrictions, sleep issues, and potential cognitive/motor regression, including handwriting regression.

In the end for us, it took a friend in Texas to hear our story and call me—she had just been through a similar ordeal and her child was healing now that she received the correct treatment.

PANDAS, and more broadly PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), are medical conditions triggered by infection and inflammation. Common triggers include strep, COVID-19, Lyme disease, flu, pneumonia, mono, and other infectious agents. When the immune system mistakenly attacks healthy brain cells, it creates brain inflammation—a misdirected immune response. When left untreated, children are relegated to a lifetime of symptom management, when healing is possible. A Medical Rule Out should be the norm in these situations, something the Massachusetts legislature is currently considering implementing with bills H.1249 and S.805 (Bills sponsored by Senator Patrick O’Connor and Representative Lipper-Garabedian, and please email your state legislatures if you are interested in moving this forward!).

After we finally received the correct diagnosis, a physician pointed me to The Look. Foundation for more information. I am now proud to serve as an advocate alongside the team. The Foundation is a parent-driven nonprofit dedicated to children and young adults affected by infection-triggered neuroinflammatory disorders like PANS and PANDAS. The Foundation supports families through personal support, community education, professional training, advocacy, and treatment grants. Our mission is clear: to dramatically improve access to accurate diagnosis and appropriate medical care for families who are currently overlooked or misdiagnosed. We work to ensure that healthcare providers LOOK. for underlying infectious and inflammatory causes when children present with mental health and/or behavioral symptoms.

It’s a critical fight: PANS/PANDAS affects an estimated 1 in 200 children, yet most are misdiagnosed with psychiatric or behavioral disorders. These children are often treated for symptoms while the underlying infection or immune issue is missed, and without proper care, they lose precious years of their childhood. But there is hope—with the right diagnosis, healing is possible.

Finding Strength in Community

My path from a scared parent to an advocate is driven by a sense of responsibility to the parents who are still where I once was—searching for answers in the middle of the night. Whether it was serving as a Team Leader for our signature Look. Walk or testifying at the State House, every step has been about making the road a little smoother for the next family.

The path to a correct diagnosis is the most challenging part of this journey. When you see your child suffering, but doctors can’t figure out the cause, you research, you connect with other parents, and you do everything in your power to find the answer. That relief when the root cause is finally discovered makes the fight worth it.

The positive impact of these efforts is deeply personal to me. For nearly two years, I kept my family’s experience private, but the Look. Walk became a powerful platform to share our story. Seeing a 54-passenger bus filled with families from our community traveling together to raise awareness was incredibly moving. It was a moment of reflection, gratitude, and hope—one I will never forget.

In addition, through the Walk I was able to connect with fellow Hingham resident Barbie Lynch, who serves as the Event Coordinator for the Look. Foundation. Barbie shared with me that her role is deeply personal after her daughter was misdiagnosed for five years, and she has since become a friend and trusted source in my own journey. This is a great example of why joining the Look. community as a caregiver has been life-changing. There’s a deep sense of connection and validation in a community where families don’t have to explain or justify their experiences. That shared understanding brings comfort, strength, and renewed purpose.

“The devastation that often comes with a PANS or PANDAS diagnosis cannot be underestimated, and no family should ever have to walk this path alone,” said Jennifer Vitelli, Executive Director of the Look. Foundation. “The fact that Kelly is willing to reach out and help others while navigating her own journey is truly extraordinary. By sharing her family’s experience, she is making sure others don’t have to face this alone. In the midst of a growing mental health crisis, her advocacy brings hope by reminding families and providers alike that with early diagnosis and the right treatment, children with PANS and PANDAS can heal, truly changing a child’s life and their family’s future.”

Kelly Newton moved to Hingham in 2014 and has since become an active community volunteer, previously serving as Treasurer for Wilder Memorial Nursery School and President of East Elementary School’s PTO. She and her husband, Steve, live in the East School District with their four children Dylan (10), Blake (10), Tyler (8) and Cora (4).

HOW TO JOIN THE MOVEMENT

The Foundation provides compassionate guidance, emotional support, and vital treatment grants that help children and young adults access essential testing and medical care.

In 2026, supporters will represent the Foundation in the Cohasset Triathlon and the Boston Marathon, and the Look. Walk — Making Strides for PANS & PANDAS returns October 3 on the Boston Common and nationwide through virtual walks. The next round of treatment grants will be awarded in February 2026.

GET INVOLVED:
Lookfoundation.org
info@lookfoundation.org
781-990-8411