Our Daughter Turns 25 This Year. She Deserves a Better Healthcare System

By Nicole Feaster

My daughter Rena will turn 25 this June.

Yesterday we went to her annual physical. My husband is a child and adolescent psychiatrist. I am a critical care certified registered nurse with more than two decades of clinical experience. We understand medicine. We have built our careers inside it.

And yet, after an hour and a half in that exam room, something shifted in me.

For years, I had tried to be measured, patient, and professional when navigating the system that had shaped my own career. But in that moment, the frustration that had quietly accumulated over 14 years finally poured out.

I spoke plainly.

There was no more polite deflection, no more instinct to soften the reality for the sake of professional courtesy.

As both a nurse and a mother, I realized I could no longer remain comfortable acting as an apologist for a system that too often closes its doors to families asking for the care their children desperately need.

After 14 years of searching for answers, I was no longer asking politely. Something had changed.

In that moment, it struck me again how profoundly difficult it has been for our family to navigate the healthcare system on behalf of our daughter.

If two medical professionals inside one household struggle to navigate this system, imagine what families without that background face.

When Rena was 9 years old, the Epstein-Barr virus triggered autoimmune encephalitis that altered the course of her life. And ours.

Before that illness, Rena was a bright, joyful child who loved music, laughter, and the simple rhythms of childhood. She was learning to live her life on the autism spectrum — and thriving. My beautiful red-headed, generationally stubborn daughter was happy, and for a time, I could finally take a deep breath.

Like many children on the autism spectrum, she experienced the world in her own unique and vibrant way. The sudden neurological storm that followed Epstein-Barr virus changed not only her health, but the trajectory of her life and the lives of everyone who loves her.

Fourteen years later, conditions such as PANS (pediatric acute-onset neuropsychiatric syndrome) and PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) are somewhat more widely recognized than they were when our daughter first became ill. But they still lack something essential: a true medical home.

Families are often left navigating fragmented systems where neurology evaluates one piece, psychiatry another, immunology another, and primary care attempts to hold the threads together.

Too often, no one owns the full picture.

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So families do. Families become the care coordinators. Families become the researchers.

Families become the ones connecting dots across specialties that rarely communicate with one another.

Our family was fortunate in many ways. We eventually found clinicians willing to engage thoughtfully with Rena’s complex presentation.

But we were not immune to the suspicion that many families encounter. Of 27 clinical contacts along the East Coast during the early months of Rena’s illness, three separate providers raised concerns suggesting factitious disorder imposed on another — an accusation that can devastate families already struggling to obtain answers.

Just two-and-a-half months into the illness, I contacted the National Institute of Mental Health and spoke directly with Dr. Susan Swedo, whose research helped define the PANDAS criteria. She agreed that Rena exceeded the clinical threshold for entry into her study at the time. Unfortunately, autism was an exclusionary criterion for participation.

That moment illustrated a painful reality: children with complex neurodevelopmental profiles often fall into the gaps between research frameworks and clinical care — frameworks that are often 20 years ahead of what is widely available to patients.

Spending much of my career working within the Penn State Hershey Medical Center system, I had seen firsthand what a well-coordinated medical infrastructure could accomplish. I first walked through those hospital doors as a teenager volunteering as a candy striper.

Years later, I returned as a registered nurse in the Pediatric Intensive Care Unit, working with Dr. John Myers and the left hypoplastic heart team.

For decades, our family also participated in Penn State Hershey Children’s Hospital THON events — witnessing the extraordinary mobilization of resources, research, and clinical care dedicated to children with cancer and other life-threatening illnesses.

Those experiences shaped my belief in medicine.

But as Rena’s illness unfolded, another realization slowly took hold.

In some ways, it would have been easier if Rena had cancer.

For pediatric cancer, we have built an extraordinary system of care. Families can access treatment at regional children’s hospitals. If specialized care cannot be provided locally, they are referred to centers of excellence such as St. Jude. The infrastructure exists. The pathways are clear.

For complex neuroimmune and neurodevelopmental disorders, those pathways simply do not exist.

Families are left to assemble care themselves — traveling across states, paying out of pocket, coordinating specialists who may never communicate with each other.

Somewhere along that journey, something broke inside of me.

I was no longer the nurse who viewed the system through the hopeful lens that had inspired my career. I was now a mother navigating its blind spots, its silos, and its limits.

And once you see those gaps from the inside, you cannot unsee them. Over the following years, our family pursued consultations across the country, often traveling long distances and paying out of pocket for evaluation and treatment.

Because only a small national network of physicians currently evaluates and treats PANS and PANDAS, families frequently travel across state lines searching for clinicians willing to engage with these complex neuroimmune presentations.

We sought care from specialists including Dr. Elizabeth Latimer at Georgetown/MedStar; Dr. Rosario Trifiletti of Columbia University practicing in Ramsey, New Jersey; Dr. Jennifer Frankovich at Stanford University; and pediatric neurologist Dr. Harry Chugani — physicians who have helped lead the clinical and research efforts surrounding PANS and PANDAS and who are connected with organizations such as the PANDAS Network and the Neuroimmune Foundation.

Like many families raising medically complex children, our household had already become fluent in navigating multidisciplinary pediatric systems.

Rena’s younger sister Claire was already receiving extensive orthopedic care at Nemours Alfred I. duPont Children’s Hospital in Wilmington, Delaware. Claire lives with her own complex medical challenges, including spastic quadriplegic cerebral palsy and bilateral hip dysplasia.

Those existing relationships ultimately helped us assemble a team willing to evaluate Rena’s condition and pursue treatment. After years of searching for physicians willing to treat the neuroimmune component of her illness, we finally assembled a team prepared to act.

Those efforts eventually led to treatment at Alfred I. duPont Children’s Hospital, where Rena underwent two cycles of total body plasmapheresis. An additional attempt at rituximab was initiated but had to be terminated after she developed a severe hypothermic reaction.

At that time, members of the neurology team expressed concern that the delay in effective treatment may have resulted in permanent neurological injury. For many families, that might feel like the end of the road.

But parents of children with complex neurological conditions learn quickly that giving up is not an option.

So we keep going. Medication monitoring. Behavioral support. Nutritional therapy in the challenging world of ARFID (avoidant/restrictive food intake disorder). Functional medicine. Supplements — sometimes many supplements. Because when you are raising a child with complex neurological needs, you become the coordinator of everything.

All skate, everybody skate. You assemble every possible resource that might improve the quality of life for the person you love. Families like ours will move heaven and earth for our children — whether they are 9 years old or 25.

Today, home-based care services make it possible for Rena to live safely in our community and remain surrounded by the people who love her.

But families should not have to fight this hard simply to obtain coordinated, compassionate medical care. What families like ours need is not extraordinary care.

We need what other serious childhood illnesses already have: a coordinated medical home — a place where neurology, psychiatry, immunology, infectious disease, and developmental medicine work together rather than in isolation.

Until that infrastructure exists for children and adults living with complex neuroimmune and neurodevelopmental disorders, families will continue to shoulder the burden of assembling care themselves.

My daughter turns 25 this year.

Our fight for her care never ended. And our family is far from alone. Across the country, families caring for individuals with complex neurological conditions are quietly holding together systems that were never designed to support them.

They deserve to be heard. They deserve better. And so do the children and adults whose lives depend on it.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dates all things and crushes down remorselessly all that stands in its path.” — Agatha Christie

Originally published by Age of Autism.

Nicole Feaster, RN-C, is a critical care certified registered nurse in State College, Pennsylvania. She writes from a rare perspective inside American medicine — both as a critical care nurse and as the mother of a medically complex adult daughter. She describes her family’s 14-year journey navigating PANS, autism, and autoimmune encephalitis, revealing the gaps that still exist in care for children whose illnesses fall between medical specialties.

The views and opinions expressed in this article are those of the authors and do not necessarily reflect the views of Children’s Health Defense.

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