Living with PANDAS 10

Teagan sits with her mom, Kim Morehouse, in her bed — it's her “safe place” — surrounded by her stuffed animals at the family’s home in Dalton. Teagan, 10, suffers from an acute case of PANDAS — Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections — which causes the sudden onset of obsessive-compulsive disorder, among other neuropsychiatric symptoms. For Teagan, one of those symptoms is the compulsion that she cannot brush her hair, even though she wants to, leaving her feeling tortured and embarrassed. 

DALTON — Before Teagan can go to the bathroom, she has to perform the “ritual.”

It starts in bed, where she holds her blankets and her phone with one hand and extends her other arm so it touches three stuffed animals. If the toys have fallen on the floor, she has to contort her body to reach all of them from her bed. Move even one, and she screams.

“Mommy, I love you,” she has to tell her mother.

Her mom, Kim Morehouse, has to give her a hug. Teagan has to respond with a kiss.

The ritual goes on. It demands precision, the same objects, words and gestures each time. A trip to the bathroom can take 20 minutes — or an hour. If someone disturbs the process, Teagan explodes. She doesn’t want to be sick. She wants to be normal.

Living with PANDAS 12

When her illness flares, Teagan rarely leaves her room, even though she longs to go outside, play on the trampoline and see her friends.

For the better part of her life, Teagan, 10, has suffered from PANDAS, an autoimmune disorder that sets in abruptly and causes on-and-off, debilitating obsessive-compulsive disorder, tics, rages, depression, and a host of other psychological, neurological and motor symptoms.

The disease manifests as ritual, depression, paranoia. During a flare, her handwriting degrades; she refuses to leave the house, shower or brush her teeth. Her long hair condenses into knots, as loose strands reach for the ceiling.

She has to follow rituals to use the bathroom or eat — 10 convoluted steps before she can touch food. Long stretches of lethargy set in, broken by violent rages.

“She’ll hit you,” Morehouse said. “She’ll say she wants you dead. Half the time she won’t remember ever saying those things, and the other half she'll be so upset that she doesn’t want to live.”

Over the past six years, Morehouse has participated in thousands of rituals, quit her job to care for her daughter, and driven up and down the East Coast with Teagan to search for answers, for a diagnosis, for acknowledgment.

Last year, PANDAS advocates across Massachusetts won a major battle when the Legislature approved a bill to force insurers to cover treatments, which can cost tens of thousands of dollars — all of that is out of pocket — for families like Teagan’s. In January, Gov. Charlie Baker signed the bill into law.

The victory is bittersweet. Teagan’s disease flared this spring, to the worst it ever has been, and insurers have until 2022 to begin covering costly treatments. She still faces an illness ignored or misunderstood by doctors, a disease that manifests as psychiatric symptoms but doesn’t respond to psychiatric medications — that isolates kids in their own heads and could be affecting as many as 1 in 250, by some estimates.

In periods of remission, Teagan loves dancing, riding horses and playing with her siblings. She lights up when she talks about her animals or how she is good at math, but she has trouble describing to others how it feels to live with PANDAS. She calls the disease “confusing” and “hard to explain.”

LIVINGWITHPANDAS 7: Kim photo

Teagan poses at her home in Dalton, in a photo taken by her mother before Teagan fell ill.

Teagan shares most often with her mother, but even Morehouse often still feels locked out of her child’s head.

“It's devastating and overwhelming for families,” said Dr. Melissa McCormack, a pediatrician in Eastern Massachusetts who works with children with PANDAS, including Teagan. “And it’s an illness that’s not completely understood or accepted, so, by the time patients reach a diagnosis, they’ve been through a lot of different evaluations. Often the families are left feeling like the behavioral symptoms were a product of something they’re doing, not a medical problem.”

Morehouse and Teagan eventually would find their answers. But, Morehouse worries about other kids, the ones who never have been able to get a diagnosis.

“It’s a given, there are kids out there that could be helped,” McCormack said. “We may eventually catch them, and we may not.”

‘My daughter was gone’

At age 4, Teagan went to sleep a kid who loved ballet, math and Barbies, and woke up a different child.

“It was like someone came in the middle of the night and kidnapped her,” Morehouse said. “My daughter was gone. You’d look in her eyes, and she was nowhere present. You could not talk to her, you could not rationalize with her.”

Teagan’s pupils were dilated. She hoarded objects and exploded into a rage if anything moved out of place, like a leaf blowing into the house.

“We were calling doctors,” Morehouse said. “They had no idea what to tell us.”

Terrified by the stranger that had replaced their child, Morehouse and her husband, Chris, dropped off their son with his grandparents and buckled Teagan into the car for the drive to Boston Children’s Hospital.

Teagan suffers from eosinophilic esophagitis, a condition that can cause decreased appetite, abdominal pain and vomiting and strictly limited the foods she could eat as a child. At the time, Morehouse thought the new symptoms could be an extreme version of her daughter’s allergic reactions to certain foods, so, she figured their specialist at Boston Children’s might be able to help.

Instead of calling the specialist, Morehouse says, staff at Boston Children’s placed Teagan in a psych holding room — with a guard. The doctor came in to tell Morehouse the problem was psychological, she remembers. The diagnosis disturbed Morehouse, who had worked as a psych nurse. This couldn’t just be psychological. It had happened overnight, like a switch flipped.

“Nobody’s listening to me,” she thought. “ 'There’s something wrong with my child.’ ”

By then, the violent rages already had consumed Teagan. She would wake in the middle of the night in a fit, insisting that she be videotaped while she slept.

“Her OCD and fears were so severe,” Morehouse said. “She was paranoid. She thought she was being poisoned." 

Weeks passed. The family drove back and forth between Boston and Dalton, afraid to keep Teagan in the psych unit, where doctors might think she was being abused and take her away, and afraid to keep her at home, where she went days without eating or drinking.

Around Teagan’s fifth birthday, her parents caved and brought her back to Boston Children’s, where she was admitted as a psychiatric patient. The doctors tried Haldol. Ativan. Prozac. Each time, Teagan woke up in a rage. Her birthday passed. Then Christmas. New Year’s.

“We were in the hospital for about a month,” Morehouse said. “And it was pure hell.”

The doctors threatened to take away Teagan’s Christmas presents unless she ate, Morehouse says. One by one, the presents disappeared. Then they told Teagan they would take her mother away, according to Morehouse. Teagan stared at her food and cried.

When Teagan finally returned home from the hospital, she developed a relatively ordinary ear infection. To treat it, doctors put her on a course of steroids and antibiotics.

A day later, Teagan was back to normal. Morehouse remembers thinking: “What the hell?”

She shared the details of Teagan’s overnight recovery with Maine lawyer Beth Alison Maloney, whose son had suffered from an illness called PANDAS several years earlier – and experienced similar symptoms. 

PANDAS can present with severe and debilitating symptoms, as in Sammy's case, or it can be more subtle and easily misdiagnosed, especially since most doctors are unfamiliar with the disorder. Tics, obsessive-compulsive disorder tendencies, rigid/inflexible thinking, behavioral changes, and anxiety, from mild to severe, could be caused by an autoimmune reaction to strep antibodies.

At home in Dalton, Morehouse typed the acronym into Google. PANDAS, she read, stood for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

She found a website that listed symptoms: OCD, tics, anxiety, depression, irritability, aggression, behavioral regression, deterioration in handwriting or math skills; the list sprawled on.

Morehouse read the symptoms again and again. Teagan had every one.

Living with PANDAS 11

In her fight to get Teagan treatment, Kim Morehouse has had her heart broken over and over again. Once, her daughter told her that she wished she still was a baby, because her illness has made her feel like she “missed her childhood.”

Journey to treatment

In the 1990s, scientists at the National Institute of Mental Health were studying the links between cases of childhood streptococcus and OCD. Led by researcher Susan Swedo, they developed a theory: During an otherwise typical infection, a child’s antibodies mistake parts of the basal ganglia — that's the part of the brain that controls habits and movements — for strep bacteria, and they attack the brain as though an enemy intruder. The researchers gave the condition a name: PANDAS.

In 2012, Swedo and her colleagues modified the criteria for the disease, effectively creating a broader diagnosis — PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, which can be triggered by anything from infections to allergies to environmental triggers. PANS/PANDAS typically set in abruptly, even overnight, and largely affect young children.

Almost a quarter-century since NIMH researchers set forth diagnostic criteria, some colleagues still argue that the link between strep and OCD remains tenuous and that PANS/PANDAS treatments are too unproved to use.

“If a child has psychiatric symptoms, that child needs psychiatric care,” Dr. Stanford Shulman, an expert on streptococcus, told Wired this year.

But, the treatments seemed to be working. While some children carry the disease into adulthood and others just grow out of symptoms, according to the Neuroimmune Foundation, many patients manage the disease effectively with treatment. Maloney’s son, who had PANDAS symptoms similar to Teagan’s, largely recovered after several years of high-dose antibiotics.

And so, even amid controversy, a network continued to grow, of primary care physicians, specialists, mental health counselors and social workers who accept the diagnosis and treat PANS/PANDAS kids — including, eventually, Teagan. 

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To get a formal diagnosis, the family traveled to New Jersey, where a doctor ordered bloodwork and found that Teagan had a history of previous infections and viruses all associated with PANS/PANDAS.

For the next two years, Teagan received a series of interventions. Steroids and antibiotics helped, but not enough. Intravenous immunoglobulin, IVIG, put her in remission for nearly six months, but the treatment also gave her aseptic meningitis. One doctor put Teagan on a medication for a seizure disorder; another found that she also had Lyme disease and put her on doxycycline.

Each treatment helped for a time, before the disease took over again.

Teagan fell behind in school; eventually, her mother moved her to a virtual program. She pulled away from her friends and replaced them with a menagerie of support animals: The family filled its house and backyard with dogs, cats, chickens, ferrets, birds, hamsters, fish and a turtle. A therapy cat named Blaze was her favorite from the start.

LIVINGWITHPANDAS 8

Teagan holds her cat, Blaze, at home in Dalton before she fell ill.

As Teagan grew with the disease, she began to grasp the vocabulary to describe her own suffering and tell her mother how she was suffering.

“The doctors say, ‘You’re God to her,’ ” Morehouse said. “You’re Mom. You’re supposed to fix everything. This is something you can’t fix, so, she hates you. I have to constantly tell myself, ‘She’s scared out of her mind right now.’ ”

By 2018, when Teagan was 7, the disease roared with alarming regularity. Nothing was working. They needed another option.

Morehouse found a doctor in Washington, D.C., who wanted to try rituximab, a monoclonal antibody drug used in relatively severe PANS/PANDAS cases.

There were plenty of reasons not to try rituximab. All the costs would have to come out of pocket, from the $650 virtual appointments to the $30,000 treatments. For years, Morehouse had been footing medical bills, raising money via GoFundMe, and through a medical trust set up by her parents, Bruce and Joan Johnston. This would surpass any previous costs.

They also would have to travel to the doctor’s office in Washington, D.C., which meant a seven-hour car trip with a child who refused to use any public bathroom along the way.

They went anyway. On the day of Teagan’s first rituximab infusion, doctors also administered steroids, and she left the office buoyant.

“We were about 6 miles from our hotel room,” Morehouse said. “And instead of wanting a taxi back, she wanted to walk.”

They walked. It was just 6 miles, and there was no way to know how long the road would be. But, at least they were moving.

Remission

Within three months of the infusion, 90 percent of Teagan’s symptoms were gone. Finally, she could concentrate on school again, play with her younger siblings, Jackson and Alora, and sing "Moana" karaoke while Jackson tried to lick the microphone.

“When she’s in remission, you’d think it’s the best time of your life, and for the most part, it is,” Morehouse said. “But, I go to sleep at night with one eye open. Wondering, when I wake up, is it all going to start all over again?”

After the rituximab treatment, Teagan and her mother traveled to Boston. This time, they weren’t driving in a panic to the psych ward, but instead joining other advocates to fight for legislation that would mandate that insurers cover treatments for children with PANS/PANDAS, after a similar bill had failed before.

This time, the bill passed, and state Sen. Jason Lewis, the bill’s sponsor, issued a triumphant news release.

“With the passage of this legislation, children and families struggling with the debilitating impacts of this terrible illness will no longer also have to struggle to access the treatment that they desperately need,” Lewis said.

The coronavirus pandemic ushered in Teagan’s longest period of remission. Without typical winter viruses spreading, viruses that usually would trigger a flare, Teagan thrived.

Meanwhile, Morehouse found a remote full-time job and started getting up at 4 a.m. to fit in a few hours of work before the kids got up, and the family adopted a therapy pig, Mabel. In January, Baker finally signed their PANDAS bill into law.

Then everything fell apart again.

Flare

When the flare began this spring, Teagan’s therapy cat, Blaze, seemed to sense it first.

“He knows when I’m going to get sick before I do,” Teagan said. “He comes and curls up in my bed, and the next day, I’m sick.”

This time, the family wasn’t sure what had caused the episode, but Teagan’s team of doctors suspected mold; Morehouse had the house tested and found toxic black mold from the previous owner’s water damage.

Morehouse desperately wanted her daughter to return to Washington for another rituximab treatment, but she had no clue how to pay for it; she started thinking about trying to sell house items.

The doctors also said Teagan needed more bloodwork first, but bringing Teagan to the hospital meant showing up with a disheveled child who could lash out at any time. The previous year, a doctor had called the Department of Children and Families on their family; nothing came of it, but Morehouse had started to live in fear that her daughter would be taken.

“She’s scared to death, up all night with nightmares,” Morehouse said. “And I’m scared to death to bring her into the ER.”

Morehouse tackled one problem at a time. She hired contractors to tear out the mold, and, when Teagan refused to eat with workers in the house, she began driving her daughter around Dalton.

Living with PANDAS 5: Car

As her mother and grandmother drive her through Dalton, Teagan begins to draw across the car seats. In this scene, which her mom calls “heartbreaking,” Teagan drew an imaginary scene of herself taken from her family by the Department of Children and Families. The family had the department called on it once, and though nothing came of it, Teagan and her mother now fear being separated because of her disease.

As the snow melted, they took long drives past old mills draped in ivy, past neat yards with American flags, past the school Teagan no longer could attend. Every so often they would follow a school bus. Safe behind her car window, she could watch the kids living a life she felt had been taken from her.

By late May, Teagan was in the worst shape of her life. Out of desperation, Morehouse began pulling out medicines they had tried before and put her daughter back on Keflex, an antibiotic they had some success with years earlier.

The next day, Teagan reappeared.

She changed her clothes and came out of her room to play with Mabel, the pig. Abandoned toys emerged from their boxes again. After a few days, she started bathing, though not yet washing her hair.

First, Morehouse cried. Then, she left a note for Teagan’s team of doctors, hoping they might make sense of the turnaround.

Mabel

One day in the sweltering heat of early June, the chatter of animals filled the yard. A dog yipped from the house; a rooster crowed from the backyard. Jackson and Alora squealed as their father pushed them on the swing.

Only Teagan remained unmoving, clutching her blanket, staring out at the yard from behind the front door. She was better, but not well enough to do the things she really wanted to, like go to dance class or feel grass under her bare feet.

Living with PANDAS 4

Teagan grins at her therapy pig, Mabel. When Teagan is really sick, smiles are rare, but her mom says they finally are getting more frequent.

Morehouse sat on the porch in bell-bottom pajama pants, caught in the uncertainty of the illness. That week, when she wasn’t wrangling kids, she had spent nearly every minute catching up on work and fighting to get insurance to cover a line for IV antibiotics that the doctors wanted. 

Mostly, she had been waiting. Waiting to see if Teagan got better or worse. Waiting for the legislation to kick in and fearing that insurers might find ways to deny coverage anyway. Waiting for the next stretch of remission — and then for everything to fall apart again.

Or maybe not. Maybe the next treatment would be the last, she thought; kids recover from this disease every year, after all.

"Remain hopeful," Swedo, the original PANS/PANDAS researcher, once told parents during an interview with the Neuroimmune Foundation. "Stay good to each other as you’re trying to be good to your child. This is a curable disorder."

As Morehouse waited on that clear morning, she watched Teagan gaze at Mabel. The pig was tearing up a plant in the front yard. Teagan was smiling. It was a rare, huge smile, the telltale marker of a good day. She looked back and forth from the wreckage to her mother, the skin around her eyes wrinkling in delight.

Her mother grinned back.

This story has been modified to reflect the nature of the discussions about PANS/PANDAS between Morehouse and Maloney. 

Francesca Paris can be reached at fparis@berkshireeagle.com and 510-207-2535.