The Wonder Years: Inside a Medical Mystery
We spent the prime of our daughter’s childhood in doctors’ offices and hospital clinics. No one could tell us what was wrong with Rory—a medical mystery that not only took a toll on her health, but on our family as well.
On a beautiful spring morning in Meridian-Kessler, I walked alongside my first-grader, Rory, her blond braids swinging as she bounced beside me with her nose in a book. She chattered happily about typical 6-year-old things: art class, a wiggly tooth, cookies in her lunchbox.
There was nothing remarkable about that two-block walk to school in April of 2012—the weather, what Rory wore, how she looked, or the conversation we had. Yet every detail is seared on my brain because it is the last crystalline memory I have of life before my daughter disappeared before my eyes.
The symptoms started innocuously. First, Rory began to complain that her new shoes—the ones she had worn all week—felt “funny.” She went back to wearing a beat-up, broken-in pair, but the next day, those too felt “weird.” After that, Rory only tolerated flip-flops, and once Rory ceased wearing shoes completely, she stopped going to school.
Then Rory, who had prided herself on being self-sufficient at an early age, suddenly stopped dressing, bathing, and brushing her hair or teeth. When I approached her with a brush to undo the snarls in her beautiful, long, honey-colored hair, or started a bubble bath and suggested she hop in for a minute, she protested and threw a tantrum like a petulant toddler. When I persisted, Rory became another person entirely. Her eyes narrowed. She grew menacing and growled at me.
When she did dress herself, she assembled odd outfits. One day, she fished an animal-print dress of mine out of a bag of castoffs headed to Goodwill and pulled it on over the red polo shirt and navy jumper of her school uniform. A shoeless Rory was wearing that outfit with matted hair and a glassy, vacant look when we ran into a classmate’s mother in the vitamin aisle of Whole Foods. Rory, who at this point fatigued so easily that she could only walk short distances, sat crammed in the orange jogging stroller that had been collecting dust in our garage for several years. Now, I used it as a wheelchair for my increasingly immobile daughter.
Rory regressed daily. Her sleep became fragmented. My husband, Jeff, and I were up with her every few hours, taking shifts like when she was a newborn. When she did sleep, her left leg kicked in a disturbing, rhythmic manner.
Everything about Rory became slower: her movement, her speech, her processing. If I put food in her mouth, she chewed slowly and swallowed, but her desire to eat was gone.
We needed help, so my mother arrived from Chicago. She peered into the family room where Rory sat in front of the blaring television, her body contorting. My mom called out a greeting, and Rory responded with a string of nonsensical words. Soon, her writhing gave way to no movement. Her “word salad” babbling became silence. She sat catatonic, staring through the TV. Every so often, for no apparent reason, tears rolled down her cheeks. I wiped them away and looked into her eyes, only to discover Rory was not there.
Once, though, in a moment of unusual clarity, she turned her head slowly, fixed her eyes on mine, and quietly said, “Mama, can you turn off the TV? It’s telling me to die.”
Doctors in Indianapolis couldn’t explain what was happening to Rory, and more important, they didn’t know how to stop its progression. Wracked with worry, I pored through medical journals late into the night. I connected online with other parents whose children suffered similar symptoms. I scheduled appointments with doctors in different states. I was determined that if the answer to what ailed Rory was out there, I would find it. And I did, but it took me nearly two years—a process that gave us a firsthand look at the toll a medical mystery can take on a family.
At the beginning, though, Rory had been a healthy baby, pink and plump, weighing nearly 9 pounds and scoring nine and 10 on her Apgar tests. She was feisty, too, so it seemed appropriate to name her Rory, traditionally a boy’s name. She hit all her milestones—sleeping through the night, sitting up, crawling, walking, talking—on time, but while she was doing so, she developed a series of seemingly unrelated medical problems.
At five months, a raging redness broke out on her cheeks, chin, and around her nostrils. Doctors labeled it eczema, but a medicine cabinet full of creams failed to resolve her angry-looking skin. Then she stopped sleeping through the night, and ear infections started at 10 months. The ear infections happened with such frequency that her doctor placed pressure and equalization tubes in both ears. While the tubes worked to keep the infections at bay, Rory continued to be irritable, often having meltdowns so intense that she was nearly kicked out of her mom’s-day-out program.
When I suggested to anyone who would listen—doctors included—that perhaps something was wrong, they assured me it was the “terrible twos” and that Rory was just more terrible than most. I took the platitudes at face value. After all, what did I know? I was just the mom—and the mom of an only child, I was often chided. This must be normal, I told myself. Unpleasant, but normal. So I did my best to suppress the alarm bells sounding in my head.
Then, a pattern emerged. Every fall, when cooling temperatures ushered in cold-and-flu season, Rory once again started showing up at my bedside several times a night, saying she couldn’t sleep. Her usually sweet disposition soured. She became very particular about the clothing she wore. And she seemed accident-prone, tripping and falling often. In the summer, Rory improved, but she never completely returned to her old self. Each November—like clockwork—the symptoms returned and intensified over the prior year.
By the time she was 4 years old, it was no longer developmentally appropriate for Rory to act like a “terrible” toddler, so Jeff and I once again sought a medical explanation for her behavior. An audiologist suggested she had an auditory processing issue. A neurologist said she had dyspraxia, a motor-planning disorder. An occupational therapist diagnosed her with sensory processing disorder. A psychiatrist thought perhaps anxiety or even obsessive-compulsive disorder. A gastroenterologist said gastroesophageal reflux disease. Autism, celiac disease, and lead poisoning were ruled out—several times. While the medical experts disagreed about what, if anything, ailed Rory, most agreed on one thing: The behavior problems were our fault. After spending just a few minutes with us, they concluded Rory needed discipline, and her parents—me especially—were too permissive. Otherwise Rory was “fine,” “normal,” “healthy.” There was “nothing really wrong.” Yet her symptoms persisted and worsened until that spring day in 2012, when it was as if someone flipped a switch.
As Rory’s condition deteriorated, Jeff and I wanted to take her to the emergency room. We worried, though, based on what we had heard from other families in similar circumstances, that Rory’s psychiatric symptoms would land her in an inpatient psychiatric unit. Once admitted, she could not be signed back out, and rather than getting a neurological workup, she would be dosed with antipsychotic medication. Instead of the ER, I made frequent, frantic calls to our pediatrician, who consulted with specialists and asked us to come to her office to discuss options.
A nurse ushered us into a small, cheerful exam room. The pediatrician, an easygoing woman who had known Rory since birth, knocked softly on the door and entered. Her customary warm smile quickly gave way to a look of alarm when she saw Rory, disheveled and cowering on the exam table. As a general practitioner, she felt out of her depth and suggested we return to a doctor we had seen previously in Chicago who was known for treating children with a similar constellation of symptoms. At that earlier appointment, the Chicago doctor had speculated Rory was suffering from an autoimmune condition and had offered treatment: intravenous immunoglobulin (IVIG), an expensive infusion of healthy antibodies extracted from the plasma of more than 1,000 blood donors, which would help reduce inflammation. Some patients—a small percentage, he assured us—needed a second IVIG. Wary of what seemed to be a pricey magic bullet, we had demurred. Now, it appeared to be our only option.
A day after her seventh birthday, Rory had the procedure in Chicago. The healthy donor antibodies, infused slowly over two days, halted Rory’s frightening downward spiral and brought her out of her cognitive fog. Rory gradually got better, and Jeff and I held our breath. However, after six weeks, the improvements stalled and her symptoms crept back. That pattern happened twice more during the next two years. Her symptoms diminished with immunotherapy, but always returned. All the while, the key to unlocking Rory’s mystery illness sat in her medical records.
In fall of 2012, a resident at one of the many hospital clinics where we sought answers had asked Rory to draw a clock. Rory seemed unsure as she took the paper and pen from the young doctor. She hesitated, then scrawled the words “I do’t kenew” across the top. Then, with a little urging, Rory tried again, this time completing a bizarre-looking clock with all the numbers crammed on the right side of the face. No one explained that a drawing like this suggested that the right side of Rory’s brain (which controls the left side of the body) was inflamed.
Late one night in February 2014, I was clicking through threads on an online parent-support website where the memoir Brain on Fire was being discussed. In the book, the author, Susannah Cahalan, went in a matter of weeks from being a journalist at the start of her career to a woman plagued by unexplained seizures and acute psychiatric symptoms. She drew an odd-looking clock that ultimately led to her diagnosis: a rare disease called anti-NMDA receptor encephalitis. I remarked that my child drew a similarly misshapen clock, but while she and Cahalan shared many symptoms, Rory had never had a seizure. A mother from Maryland sent me a message, urging me to explore autoimmune encephalitis (AE)—of which anti-NMDA receptor was just one type. She suggested I contact a pediatric neurologist and pediatric rheumatologist who specialized in the condition at Duke Children’s Hospital and Health Center in North Carolina.
I climbed into bed, stared at the ceiling, and wondered, Did I imagine that clock? The next morning, I called the hospital to request a copy. When it arrived, I stared at Rory’s wonky drawing, and suddenly, all the seemingly unrelated symptoms—the coordination problems, personality changes, insomnia, and cognitive decline—all made sense. She had autoimmune encephalitis. I was sure of it.
Autoimmune encephalitis was first described in 2005, when Josep Dalmau, a researcher at the University of Pennsylvania, and colleagues identified a type of autoimmune disease that targeted the brain’s NMDA receptors. Since then, researchers have discovered more than 15 new antibody-mediated diseases under the banner of autoimmune encephalitis.
Antibodies are a key part of a healthy immune system, but in AE, they mistakenly target receptors in the brain’s tissue, impairing neural function. And while the disease occurs in men, women, and children of all ages and ethnicities, it has historically been diagnosed most frequently in young women. AE produces a wide range of neurological and psychiatric symptoms. In children, the most common are abnormal behavior (temper tantrums, agitation, aggression, and changes in mood or personality), seizures, and movement disorders. Many children also experience changes in speech. Prompt treatment with first-line therapies like steroids, IVIG, and plasma exchange, and second-line therapies, including immunosuppressive drugs, leads to best patient outcomes. Still, recovery can take a year or more, and AE can be life threatening. What causes AE remains unknown, though a leading theory suggests a virus may trigger an inappropriate immune response.
Initially considered very rare, AE may be more common than previously thought, though Will McDow, cofounder of the Autoimmune Encephalitis Alliance, hesitates to estimate an incidence rate. “I don’t think anyone has a good handle on the number of cases,” McDow says—there is just not enough data on the disease yet. Although AE was only identified a little more than a decade ago, the condition has likely been around forever, misdiagnosed as autism, severe epilepsy, psychiatric disorders, or even demonic possession.
I pleaded with Rory’s local neurologist to call Dalmau at the University of Pennsylvania for advice on testing and potential treatment, or to refer Rory to the Duke Children’s Autoimmune Brain Disease Clinic. Days passed. I called her office regularly, and yet I got no response. Despite my fear and frustration, I had maintained polite discourse with all medical professionals up to this point—even though they had been unable to help Rory. Now my conversations with the doctor’s nurse became combative. Why didn’t this doctor, who had been watching Rory decline for more than a year, share the same sense of urgency? I screeched into the phone.
Desperate, I decided to email Dr. William Gallentine, a pediatric neurologist and co-director of the Autoimmune Brain Disease Program at Duke Children’s. I ended my message by telling Gallentine that I would drive the nearly 700 miles to North Carolina in a heartbeat if he thought he could help Rory. I hit the send button and prayed. I prayed for a response, and I prayed Rory had AE.
It’s an odd thing to pray that your child has a life-threatening illness, but I did. In the years since Rory’s symptoms had begun, a growing list of stresses had added to our constant worry over our daughter’s health. I stopped working as a freelance writer because caring for Rory and putting together the puzzle of her illness became my full-time job. Sifting through piles of medical bills, fighting insurance battles, and fielding phone calls and emails from school rounded out my days. When your child has a medical mystery, no one hands you a blueprint to the healthcare, insurance, and education systems. You’re negotiating uncharted terrain alone. At the end of each day, after waging what felt like a war on many fronts, Jeff and I would collapse into bed exhausted, only to wake after a few fitful hours of sleep and do it all again.
When I was 6 years old, I took a water survival class. To pass, I had to jump from the high dive fully clothed and fashion my pants and shirt into flotation devices. I still remember the heaviness of the flannel shirt, jeans, and tennis shoes pulling me under as soon as I hit the surface. I kicked the shoes off, peeled the pants from my legs, and wriggled out of the shirt, then furiously treaded water and gulped for air while I struggled to tie knots in the pants legs and shirt arms, in order to inflate the clothing like a balloon. All the while I thought, even at that young age, that if it really were a survival situation, I wouldn’t waste energy or air. I’d do the bare minimum to keep my head above water.
When Rory became sick, that’s exactly what Jeff and I did. Our marriage went into a holding pattern. Our house, a 1928 fixer-upper we had bought three years earlier to be close to a highly rated magnet school, began to fall down around us. Finding time to do day-to-day tasks like cleaning, opening mail, and paying bills became a luxury. We needed help with meals, laundry, and lawn mowing, but how could we ask for it when we couldn’t even explain what was happening to Rory? With no diagnosis to share, no one offered the type of aid that often comes to families with a sick child. Even Rory’s school, considered one of the best in the Indianapolis Public School system, struggled to provide the understanding and scholastic support she needed.
Now, a diagnosis—even one as awful as AE—might mean an end to the fear and desperation. Access to treatment. Insurance approvals. A prognosis. Support. And maybe even an end to our living hell—or so I thought.
Less than 24 hours after lobbing the Hail Mary email into cyberspace, there, in my inbox, sat a reply from Gallentine. I hesitated. The message would either say, “Yes, we can help your daughter” or “No, we cannot.” Unopened, hope still existed for Rory. I took a deep breath, then clicked and read: Sorry to hear about all you and your family have been through. Certainly warrants closer evaluation. We would be happy to assess your daughter to see if there is anything that we can do that could potentially help.
In disbelief, I reread Gallentine’s three sentences out loud, let out a whoop, and called Jeff to share the good news. Soon, we were on our way to North Carolina. When Gallentine entered the room, I liked him immediately. He shook Jeff’s hand, then mine, and finally turned and introduced himself to Rory. He spoke to her like a person. Not a child. Not a sick child. He took a squishy ball from the black leather doctor bag he carried and instructed Rory to follow it with her eyes. He tapped her knees and elbows, testing her reflexes. Rory remembers nothing about the 10 weeks in 2012 when she was in medical crises, so before I dove into the terrifying details of that time, Gallentine suggested Jeff take Rory to the waiting room. I recounted Rory’s clinical history from beginning to end, and he typed furiously on a laptop. It struck me that he was like a reporter, taking notes and piecing together a story. Then I handed him a copy of Rory’s clock. “Wow,” he murmured. He looked up from the paper. “And no one thought this warranted a full neurological work up?” I shook my head no.
Gallentine and his colleague at Duke, Dr. Heather Van Mater, a pediatric-rheumatology specialist, didn’t set out to found a clinic for AE patients, but they soon realized they each were treating a subset of people with overlapping neurological and rheumatologic symptoms. One patient in particular, a little girl experiencing unrelenting seizures, required the two doctors to consult regularly to create a cohesive treatment plan.
When the clinic first started, they devoted two half-days a month to seeing the handful of AE patients together. Two and a half years later, the number of patients has grown to 110, and the doctors have evaluated 150 children for AE. The clinic occupies a full day each week. To provide comprehensive treatment, Gallentine and Van Mater eventually incorporated a third doctor—a psychiatrist—into their evaluations.
We spent the next few days in Durham. Rory was sedated and had an MRI, her first despite being under the care of a local neurologist for more than a year. A team of doctors performed a lumbar puncture, inserting a long needle between vertebrae to extract spinal fluid. A nurse drew endless vials of blood.
The test results wouldn’t be ready for several days, but there was enough evidence in Rory’s clinical presentation to warrant an infusion of steroids to calm any inflammation, the doctors said. On our last morning in Durham, we walked into the Jim Valvano Day Hospital, named for the North Carolina State basketball coach who battled cancer and famously said, “Don’t give up. Don’t ever give up.” Those words were painted on a mural outside the entrance. I read them, and choked back tears as Rory and I made our way into a large room filled with sick children, many bald and pale, others with the same hollow, vacant look I saw in my own child’s eyes. Some had ports surgically implanted in their chests, others wailed as nurses inserted an IV into a hand, wrist, or arm. Each child was attached to a pole that held a bag of fluid—chemotherapy, blood, immunoglobulin, steroids, or other treatments.
A nurse quickly hooked Rory up to an IV of steroids. The infusion took less than two hours, and soon we were on our way home. We hadn’t even made it out of North Carolina when Rory suddenly started chattering from the backseat. Her voice, which for years had been flat and devoid of emotional affect save for irritability, suddenly became bright and lilting. She peppered us with questions and engaged in back-and-forth conversation. My mind reeled at the dramatic change. What the hell? This is really happening, right? I’m not imagining this?
Back in Indianapolis, the test results were in. While there were no specific AE antibodies found, Rory had several markers of inflammation. She also tested positive for a different kind of autoantibody, one that’s commonly associated with Sjogren’s, another autoimmune disease. After six years and six months, 20 doctors in four states, and just six days at Duke, Rory had a diagnosis: seronegative autoimmune encephalitis.
This is what I had prayed for, right? An answer. But the diagnosis led to more questions. Unlike the most-studied and best-understood type of AE, anti-NMDA receptor encephalitis, seronegative AE has no blood test to irrefutably confirm that a patient has the disease. Instead, seronegative AE is a clinical diagnosis based on symptoms, markers of inflammation in the blood, and a response to immune-modulating medication. Gallentine explains it this way: The diagnosis doesn’t mean there isn’t something wrong with your immune system—it means researchers haven’t discovered your particular antibody yet, though new ones are being identified regularly.
After Rory’s diagnosis, we sent up a flare. Family, friends, and even strangers answered, covering a large part of our medical travel expenses. A group of people stepped in to help. The woman we had seen that day in the vitamin aisle embraced Rory like she was one of her own daughters. A friend, who lived a half-mile away, juggled her family and a full-time job yet insisted on feeding our cat and watering our plants whenever we went to Duke. My high-school friend and his partner serendipitously moved in across the street and became our utility helpers. We were grateful for all of the support, but the outpouring underscored something we had suspected since Rory first became ill: We had lost friends. Up until this point, Jeff and I had made excuses for their lack of support. Maybe they don’t know, we said at first. Then, perhaps they don’t understand. Finally, maybe we need to explain it better. Eventually, their silence and absence became undeniable.
A diagnosis didn’t end our battles with the insurance company, either. In the second month of treatment, Rory’s symptoms suddenly stopped improving, and she began losing ground. Gallentine and Van Mater agreed she needed CellCept, an immunosuppressant often given to transplant patients to tamp down the production of bad antibodies. They also started her on monthly IVIG in Durham. After a few months, Gallentine gave the go-ahead for Rory to have the infusions in Indianapolis, rather than driving to Duke.
Since the beginning of Rory’s illness, we had received explanation-of-benefit statements from our insurer like most people get junk mail. Some days, they arrived by the handful, so I was not surprised when an envelope bearing the company’s logo arrived in our mailbox in mid-September 2014. I was stunned, however, when I opened it and discovered they had denied Gallentine’s request for IVIG in Indianapolis. I allowed myself to cry for a few minutes, then I called Jeff at work so we could start the appeal. Gallentine wrote a letter to the insurer, making it clear that without IVIG, Rory would relapse. The company stood firm. A peer-to-peer conversation between Gallentine and one of the insurer’s doctors yielded the same result. Maddeningly, the infusion they had approved in North Carolina was deemed not medically necessary in Indianapolis, so we had to keep uprooting our lives.
During Rory’s illness and months of travel for treatment, I scrolled through Facebook, thinking it was helping me stay connected to our friends and her school. In reality, it was a painful reminder of everything missing from our lives: soccer games and swim meets, dance recitals, date nights, time with friends, vacations. The most difficult photos for me to see, though, were ones from all the birthday parties Rory wasn’t invited to, even though she had returned to school. Often, the people posting these photos were the same ones who said, “Let me know if there’s anything I can do.” You could include my kid, I thought.
During fourth grade, Rory missed nearly a week of school every month to go to Duke, and classmates began wondering about her absences. At the encouragement of the school, Jeff and I decided to have a need-to-know conversation with her class about what Rory had been going through and what AE was. We thought the talk went pretty well. That evening, I emailed the parents explaining in detail why we had been in the classroom. Out of 30 families, only three responded. Worse, after the talk, Rory told me, “People are treating me like my brain is broken.”
Even adults had a hard time understanding Rory’s diagnosis. Around the time when we first went to Duke, another student at her school became seriously sick with a life-threatening blood disorder. I watched as this child and family were embraced and lifted up by the school community. Parents sold T-shirts outside the main office to help with the family’s medical expenses. Every Friday, instead of uniform polos, students were encouraged to wear red shirts in solidarity with the student, who was undergoing treatment at a nearby hospital. Months later, at a meeting to discuss how Rory’s medical problems were affecting her schoolwork, I suggested to the principal that Rory might benefit from similar support. She responded that the other child “could have died.” Incredulous, Jeff and I, in unison, reminded her that Rory could have, too.
One day after school, Rory’s teacher caught me outside the gymnasium to tell me that Rory had been “rude” to an adult. This woman had been given reams of information about AE, but still insisted Rory’s anxiety and related behavior was a combination of conscious choice and parenting failure. “Rory probably doesn’t know she can’t speak to adults like that,” she said. I fought the urge to choke her, and instead gritted my teeth and politely but firmly said, “No. That’s not it.”
Eventually, Rory, a little girl who loved school and fought so hard to get back to it, told me she felt invisible there. In the mornings, when I dropped her off, she would cry and beg to go home. I would peel her off of me and nudge her in the direction of the classroom. With a fake smile plastered on my face, I exchanged pleasantries with other parents until I could get around the corner of the building, where I dissolved into tears. I would spend the entire day knowing she was struggling and worrying about the damage being done to her self worth.
On top of that, while being as honest as possible with our friends and family, we fretted about how much to tell Rory of her illness and its risks. We deferred the gut-wrenching conversation until one evening in 2014 when we were having dinner in Durham with Will McDow, cofounder of the AE Alliance, his wife, and their oldest daughter. The couple’s youngest daughter, Florence, had AE and died in 2012 at the age of 6. In the middle of the meal, Rory walked over to me and whispered in my ear, asking if the McDow’s oldest daughter had AE. I shook my head no, thinking that would be the end of it. “Then why do her parents care about AE?” she pressed. I told her we would talk about it later in private. Back at the hotel, the elevator doors had barely closed when Rory turned to me and asked, “Can you tell me now?” I told her about Florence and braced myself for the question I knew was coming next. “Am I going to die, too?”
No, I assured her. No.
In the year and a half following our insurer’s Indianapolis IVIG denial, we went to Duke monthly so Rory could receive the infusion. The trip became automatic: We would drive 11 hours on a Monday. Rory would have her six-hour infusion on Tuesday. Wednesday, we would make the 11-hour trek home. Twenty-two hours in the car for a six-hour infusion. It was ridiculous, but it was our only option if Jeff and I wanted Rory to get well. And she was getting better. Rory, who missed 10 months of school between the end of first grade and the start of fourth grade, began the 2014–2015 school year on time. She tried out for the school musical. She was doing so well on her combination of medicines that, in November 2014, Van Mater decided to dial down the steroids in the hope they were no longer needed. I was cautiously optimistic, until one afternoon when I got a call from a classmate’s mother. She had arrived at play practice early to pick up her child and wanted me to know Rory was hysterical. I raced the two blocks to school and entered the cafeteria, where hordes of grade-schoolers were singing and dancing at the direction of a few teachers. At first, I couldn’t find Rory, but then a child pointed to the corner of the room. There, my terrified, sobbing daughter hid underneath lunch tables. She was relapsing.
Rory immediately got a full dose of steroids and improved. In a few months, Gallentine and Van Mater tried again to lower her steroid dose, this time more gradually, and she didn’t relapse. They lowered it a bit more, until she was able to go without them.
Rory no longer needs IVIG, and CellCept alone is working to keep her immune system in check. Eventually, Van Mater will taper her dose of CellCept. When that happens, the hope is that all of the auto-reactive cells will be gone, and Rory’s immune system will have reset to its normal, healthy state. When I ask the doctors about Rory’s prognosis, Van Mater admits there’s really no way of knowing. If she had anti-NMDA receptor type, Van Mater could definitively tell me that Rory has an 80 to 85 percent chance of recovery without relapse. But because she is seronegative, it’s an unknown. “What we say to people is that since we now know what it is, and we know what you’ve responded to in the past, we feel like we should be able to stay ahead of it,” Van Mater says. “In that way, I would think she has a very good prognosis.”
If Rory ever relapsed (and I pray every day she won’t), Jeff and I wouldn’t take her to Riley, Community, or St. Vincent’s. We would load her into the car and drive nearly 700 miles to the ER at Duke, because that same fear we faced in 2012—that she would not get appropriate medical treatment—still exists. The AE Alliance maintains a database of clinicians who diagnose and treat autoimmune encephalitis. Today, two years after Rory’s diagnosis, there are still no Indianapolis doctors on the list. Even with a diagnosis in hand from a team of doctors at one of the top hospitals in the country, I have not been able to get a local neurologist to join Rory’s team. I inquired with the largest local neurology practice as to whether the pediatric neurologist was familiar with AE and would see Rory. They never called me back. At one of Indy’s pediatric hospitals, a neurologist who has treated patients with anti-NMDA receptor encephalitis seemed dumbfounded by the Duke doctors’ decision to treat Rory after she failed to test positive for identified antibodies.
Some days I think, Why did this happen to us? But at least Jeff and I, an attorney and journalist, had the right combined skill set to solve the mystery and navigate the medical and insurance systems. What happens to the families who don’t? Still, the loneliness of AE can be crushing. We spent so many years feeling isolated by the disease that we don’t know how to be around people anymore, unless they understand AE and what we’ve gone through. I used to pray that we would get our “normal” life back. I know now that no such thing is possible. Rory is healthy, but we are forever changed. We will never get those years back with her, and we grieve for them. And yet, thanks to Duke’s Gallentine and Van Mater, she is still here, the same smart, spunky girl we thought we lost in 2012. Many affected by AE aren’t as lucky.
Rory is 10 now. We removed her from her IPS school, and on the 20-minute drive to her new school, where she is thriving with a nurturing environment and a fresh start, we talk about typical 10-year-old things: playing Minecraft, her love of Dr. Who, the drawing she’s working on, a new song she wants to download. These unremarkable topics are, for her, completely remarkable. She’s joined a school club and is looking forward to a lock-in with friends. She likes school again and is making steady academic progress. Recently, she won a part in the school play. She memorized her lines and delivered them with gusto.
Her role? Fittingly, a brave girl.