When Sudden Behavior Changes Are Actually PANDAS

One day, out of nowhere, my friend Margret’s son stormed off the bus after school, threw his book bag on the floor, and said he wanted “to die.” He swiftly grabbed a hammer from the basement, with the might of an 8-year-old who was acting like he’d chugged 20 cans of Red Bull. “Kill me, kill me, kill me,” he said, catatonic, yet full of rage.

Beyond alarmed and frightened, his mom managed to pull the hammer from his white-knuckled grip. She pulled him close, in an effort to pacify a son she suddenly didn’t recognize, but he was inconsolable. He broke free, throwing himself on the floor and into walls, screaming and crying in a guttural way.

That day, December 10th, 2018, Will Hurwitz, a little boy known and loved for his incessant energy, insatiable curiosity, sweet-natured personality, and wide, infectious grin, was sluggish, sullen, and withdrawn at school, according to his teacher. He’d lost it that morning when he was told he had to accompany his babysitter to his sister’s dance class, and his overwhelming sadness prevented him from engaging with classmates.

No one understood why.

In retrospect, there were subtle signs something was amiss. Will developed uncharacteristic, obsessive-compulsive behavior during the months leading up to that gut-wrenching day. He had to shower and gel his hair to perfection each morning before school. He would only wear shirts made of dry fit material. After a family outing bowling, he became irrationally angry when he lost, and said he was having “bad thoughts.”

Will was taken to the emergency room days later, and doctors ordered bloodwork and a CT scan. Dumbfounded by the results, he was transferred to another hospital, where he was promptly diagnosed with severe anxiety.

Margret was told she had to leave her precious child at the inpatient psychiatric ward for one week. Reluctantly, she left her heart in the hospital, in the hands of strangers. She literally collapsed when she returned home.

Will was given Prozac and learned coping skills for extreme anxiety, and the interventions seemed to help. Margret was thrilled when he was discharged on Christmas, and looked forward to a quiet day at home reconnecting. She had all of his favorite things on hand: sweet treats, Goldfish, the latest Diary of a Wimpy Kid book, new Patriots gear.

Just hours after returning home, Will curled up into the fetal position. His complexion turned gray and yellow, his behavior regressed, and he started having tics. He would alternate between slipping into a daze and becoming aggressive, and wound up back in a doctor’s care.

Still, no one had any answers, despite countless examinations and tests.

Margret settled into a new familiar. Her once bright, bubbly little boy now made loud noises, had uncontrollable tics, hid under tables, and repeated the same things over and over again. She checked on him too many times to count to ensure he was breathing every night.

Finally, an outpatient psychiatrist offered Margret a glimmer of hope. She was convinced his issues were neurological, not psychological, as his gait was off and his eyes were fully dilated. She referred him to yet another children’s hospital.

A child neurologist concurred with the psychiatrist and suggested, for the first time in months, despite multiple doctors from various institutions weighing in on Will’s case, that he had Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). According to the PANDAS Network, it is a rare condition that affects approximately one in 200 children. It was discovered in the 1990s and remains controversial; some doctors don’t believe in it or recognize its symptoms, and many insurance companies won’t cover any treatments related to PANDAS.

Will was admitted to the hospital and tested positive for strep — the precursor for PANDAS — and mycoplasma pneumonia. His MRI showed abscesses on his tonsils, and an ENT took them out and put Will on Augmentin, the drug of choice for strep.

Despite heavy doses of two different types of antibiotics, Will’s condition continued to deteriorate. He missed months of school due to aggression, Obsessive-Compulsive Disorder, inappropriate behavior, and crippling anxiety. Once an avid reader, he no longer had the ability or desire to open a book. He suffered from frequent bouts of uncontrollable urination, profound memory loss, and vivid hallucinations.

Will was a prisoner in his own home, a hospital, or a doctor’s office. His beloved sister had a lock on her door to keep her safe from him. Margret lost her job due to the overwhelming amount of time needed for caregiving.

Determined to help her son, Margret tracked down a neuropsychologist who specializes in PANDAS cases, and drove hours for a consult. He confirmed Will’s PANDAS diagnosis, and recommended immunoglobulin (IVIG) treatment. Research suggests it can improve functioning, emotional ups and downs, and obsessive-compulsive symptoms in severe PANDAS cases like Will’s.

Will now receives IVIG treatment every week—and there have been some noticeable improvements. He no longer runs away, and he urinates less frequently. There are times when he will pick up a book or draw a picture. He can engage socially to a degree, but deals with multiple complications, including infections. He is nowhere near full recovery.

This season, when strep is rampant, it’s important to learn the warning signs of PANDAS, so diagnosis and treatment won’t be delayed. Children often experience one or more of the following (Will had every single one):

– Symptoms of Obsessive-Compulsive Disorder and/or tics

– Symptoms of attention-deficit/hyperactivity disorder (ADHD), such as hyperactivity, inattention, or fidgeting

– Separation anxiety (e.g., child is “clingy” and has difficulty separating from his or her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)

– Mood changes, such as irritability, sadness, or emotional lability (i.e., a tendency to laugh or cry unexpectedly at what might seem the wrong moment)

– Trouble sleeping

– Nighttime bed-wetting, frequent daytime urination, or both

– Changes in motor skills, such as changes in handwriting

– Joint pains

While the past 365 days of PANDAS have been devastating for Will’s family, they are united and dedicated to raising awareness of a disease they never heard of before it changed life as they knew it.

For more information, visit the PANDAS Network.