One night, when she was about nine, Reagan Rhodes insisted to everyone in earshot that she was going to die in her sleep.
The chestnut-haired girl with a mischievous smile had already been anxious before bedtime that night; truth be told, she’d been anxious for years. But this was a new level.
“I’m going to die in my sleep tonight,” the Kingwood third-grader reiterated to her mom, Candi Rhodes, when she rushed to check on her daughter.
Candi called her pediatrician, who told her to take Reagan to the emergency room. Instead, Candi remained with her daughter and tried as best she could to calm her down. The next day, mother and daughter went to a psychiatrist, who prescribed Ativan and Zoloft.
That night, there was a repeat performance. It took about a week before Reagan shook the morbid thoughts.
The reprieve had a limited shelf life. Night terrors and panic attacks continued throughout the school year, along with the attention deficit hyperactivity disorder that had been diagnosed years before. Topping it all off were the tics and tricks of the mind — the throat-clearing, the incessant blinking, the constant feeling of having to use the restroom. Candi worried about how her daughter would be treated at school; she pulled her out and home-schooled her for the fourth grade.
“Where do we go now?” an exasperated Candi asked one of Reagan’s pediatricians. The doctor responded with a sort of Hail Mary: She’d had other patients similar to Reagan — mostly children with ADHD and extreme tics. Some therapists called this Sensory Processing Disorder, and there were nonmedical treatments — primarily occupational therapy.
Candi went into full-tilt research mode. The sensory stuff clicked, but from there she wound up on a site that may just as well have been tailor-made for Reagan. Every symptom matched. On these forums, it was as if every kid was Reagan and every scared and helpless mom was Candi. Some of the symptoms even went beyond Reagan’s, including anorexia, depression, age regression, violent rage.
At the end, it was like some punch line to a sick joke: These symptoms were supposedly triggered by the common strep infection. The disorder even had a funny name, Pandas: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
But, she read, the diagnosis was controversial; many doctors didn’t believe there was enough evidence to prove its existence. Many more had never heard of it. Parents swapped stories about which doctors were “sympathetic” and which thought they were crazy. Candi found the name of a Houston physician who claimed to have had success treating these kids.
The doctor put Reagan on an antibiotic. In four days, Candi says, the problems were gone. Now 12, Reagan just won a math honors award at school, where she’s also a cheerleader. She’s also looking forward to trying out for basketball next year.
“I feel horrible to even think that I allowed my child to be put on all those medicines,” Candi says. Like many parents around the country, she is a Pandas believer — part of a growing contingent who want to raise awareness and want the diagnosis accepted by mainstream medicine. To most doctors, there is just no evidence that strep, or any other infection, is causing these symptoms. The parents claim, however, that the evidence is right before their eyes: They got their children back.
Perhaps the most ridiculously acronymed condition in the history of modern medicine, Pandas was first proposed in 1998 by Susan Swedo, a physician at the National Institute of Mental Health whose research focused on childhood obsessive-compulsive disorder.
Swedo and her colleagues found a subgroup of kids who had experienced a sudden onset of OCD, tics and behavioral changes in the wake of a variety of infections. Swedo focused on those children whose symptoms followed a strep infection. She suspected that, whatever was going on, it seemed to follow the pattern of a movement disorder called Sydenham’s chorea.
First described in the 17th century as “Saint Vitus’s dance,” Sydenham’s induces spontaneous and often severe jerking of the limbs, as well as behavioral changes and signs of OCD. It’s associated with rheumatic fever, which is triggered by strep and tricks the body’s autoimmune system via a process called molecular mimicry, in which antibodies attack the host, and not the intruder. The antibodies wind up attacking the heart and other organs. In Sydenham’s chorea, it’s believed that antibodies attack the basal ganglia in the brain.
Swedo suggested that something similar was happening with the kids in her study group, only they were presenting with a much broader spectrum of symptoms. However, further studies proved inconclusive: Although there appeared to be a correlation with strep, there was no definitive proof identifying it as the cause. While Swedo had some support from prominent physicians, she also took lumps from others, primarily a well-respected Johns Hopkins pediatric neurologist named Harvey Singer. Singer didn’t believe Swedo was completely out to lunch; his writings suggested that the Pandas diagnosis was premature but the general concept was worth exploring. (Today Swedo estimates that as many as 25 percent of kids diagnosed with OCD and tic orders actually have Pandas.)
The two camps had a sit-down in 2010 that fortunately avoided fisticuffs, with Swedo stepping back from the Pandas acronym and its strict adherence to strep, and suggested “PANS,” pediatric acute-onset neuropsychiatric disorder. Not to be outdone, Singer opted for “CANS,” childhood acute neuropsychiatric symptoms.
By that time, however, Pandas had taken on a life of its own, having been embraced by parents who believed they’d finally found a cause for their kids’ sudden bizarre behavior and by some physicians who doled out the diagnosis and treated the kids with antibiotics. In what they considered severe cases, physicians recommended courses of plasma exchange or IVIG — intravenous immunoglobulin.
Some general pediatricians, not knowing what to believe, referred suspected Pandas patients to specialists. The children referred to Ian Butler, a pediatric neurologist and director of the Division of Child and Adolescent Neurology at The University of Texas Health Science Center at Houston, may have had problems. But, Butler says, it’s never been Pandas.
“I’ve never been compelled to make that diagnosis,” says Butler, who’s also an attending physician at Children’s Memorial Hermann Hospital and a consulting neurologist at UTMD Anderson Cancer Center, Shriners Hospital for Children in Houston and Lyndon B. Johnson General Hospital. “So I guess I’m behind the times. Or maybe I’m just a crusty old neurologist who should be put out to retirement or something.”
Because of the debate over Pandas/PANS and the lack of a consensus 16 years after its official debut in the literature, there is a fair amount of confusing, and sometimes conflicting, information littering support websites for parents. One of the more popular support sites, Pandas Network, suggests that Pandas kids should undergo long-term treatment with antibiotics, and then cites as a reference a statement by the American Academy of Pediatrics that actually says the opposite. Even the National Institute of Mental Health, where Swedo is now the chief of pediatrics and developmental neuroscience, states that “there isn’t enough evidence to recommend the long-term use of antibiotics” and “the treatments for children with Pandas are the same as if they had other types of OCD or tic disorders.”
The Pandas Network, which estimates that at least 162,000 children in the United States have Pandas, also provides a list of 14 “leading physicians” who treat the disorder, as well as a breakdown of “sympathetic” doctors by state. The list for Texas includes only three doctors.
Despite the formal positions of NIMH and the American Academy of Pediatrics, the doctors on the Pandas Network site claim to have had success with antibiotics. And some parents swear by it.
Looking back on it nearly 20 years later, Shreenath Doctor was sure the teenage boy he evaluated in the psych ward had Pandas.
The improbably named Doctor already had a PhD and a DDS under his belt, and now he was going for the MD. Specifically, in head and neck surgery. But he says things changed during his psych rotation when he saw a kid, maybe 15 or 16, undergo shock therapy.
Doctor noticed that the kid’s throat was red, something he would never have considered as a possible link to psychiatric symptoms, but which he now believes was a clear indication that an infection was the culprit.
“Sometimes, those faces you can’t forget,” he says today.
Doctor, a soft-spoken Hempstead native who likes to handcraft über-fancy fountain pens when he’s not fielding questions from parents throughout Texas and neighboring states who have nearly run out of hope, believes that science is on his side.
“When people tell me that there’s no cause and link between infection and mental illness, I have to sit there and go, ‘Are they reading?’ Because it’s out there,” he says. Currently he’s a big fan of a 2013 article in the Journal of Neuroinflammation that, in case you let your subscription lapse and missed it, reviews “the link between autoimmunity and neuropsychiatric disorders.” The authors state that there’s mounting evidence that inflammation may play a larger role in these disorders than thought.
He’s also a big fan of sharing these kinds of articles with his patients. He encourages them to comb through the National Library of Medicine online, and he also posts relevant items on a Facebook page set up for patients.
“The more knowledge you give a person, the better fighting chance they have,” he says. “It’s the only hope of control a parent has.”
And that knowledge is out there, says Doctor, who earned his medical degree at The University of Texas Medical Branch at Galveston and subsequently served as the chief resident in psychiatry at Baylor College of Medicine. You just might have to look beyond the United States to find it. He believes that while researchers here are stuck quibbling over what acronym to use, other countries have progressed. Whether you call it Pandas or PANS, he says, it’s just part of what the Europeans call “dopamine mediated post-infectious autoimmune encephalitis”(which admittedly is not very acronym-friendly).
“The thing is, is that Pandas is really just a name,” Doctor says. “What really is happening is something called an inflammation, and it’s just a process in the brain that we kind of reserve for the rest of the body…it affects every organ in our body. The brain is no exception.”
Of course, he points out, not all children are susceptible.
“A lot of this is genetics,” he says. “And the genetics basically are the ability to sort of recognize whether part of your body is self or non-self. In Pandas, your immune system doesn’t recognize part of your brain as being self.”
He’s both frustrated by and understanding of mainstream medicine’s reluctance to buy the notion that all these problems can be traced back to any number of garden-variety infections, because it’s startling to think that a ton of currently overmedicated kids might just need a basic antibiotic.
“It was as hard for me to believe as it was for other people, but you have to keep an open mind,” Doctor says.
Doctor is the one who put Reagan Rhodes on antibiotics and, according to Candi, turned her life around. But strangely, he also suggested to Candi that herOCD and anxiety might also be the result of an autoimmune disorder, which bucks the whole “P” part of Pandas but which works if one is eschewing the narrowly defined Pandas label.
Doctor also referred Reagan and Candi to an otolaryngologist to see if they might benefit from tonsillectomies, which Doctor believes can help some of these patients. The Rhodes ladies ultimately did have their tonsils removed, and Candi couldn’t be happier.
Yet tonsillectomies are not recommended by the very people who brought us Pandas in the first place: The National Institute of Mental Health states that “there is no evidence that they are helpful.”
That would make sense to pediatric neurologist Amber Stocco, who says that when it comes to Pandas, there’s no evidence, period.
Stocco, the former medical director of Texas Children’s Hospital’s Movement Disorders Clinic, says she was curious enough to want to form a team at TCH to investigate further, but got no takers.
Stocco, who now practices in Oklahoma City, says she asked immunologists, rheumatologists and infectious disease folks, but “nobody wanted to touch it.” (We reached out to Texas Children’s Hospital to find out where their experts stood on Pandas, but unlike the scruffy layabouts at Johns Hopkins Children’s Center, Boston Children’s Hospital, Stanford Children’s Health and the Yale School of Medicine, who have given multiple Pandas-related interviews for years, TCH experts have “very demanding clinic hours” and were therefore, a spokeswoman told us, unavailable for comment.)
Stocco, who has treated her fair share of Sydenham’s chorea cases, specializes in the treatment of children with anti-NMDA receptor encephalitis — an autoimmune disorder that can cause psychiatric symptoms.
“You could easily see how somebody could jump from the diagnosis of Sydenham’s, which is a very real diagnosis, to the diagnosis of Pandas,” she says. “You take out the chorea, and you’ve got a lot of similar features.”
She explains that the theory behind Pandas makes sense; she’s just never seen an autoimmune cause in any of the children referred to her with a Pandas diagnosis.
“I don’t think any of us are willing to say it absolutely does not exist,” she says. “It’s just that most things that we have had experience with end up not being what we would call autoimmune.”
She says she understands the appeal of Pandas, though: “Parents want to know ‘why.’ And that’s normal, and I respect that, and that’s something I would want to know if I were a parent….They want something they can do something about. And, you know, a lot of behavioral stuff, there’s not….But if you can slap somebody on antibiotics and it’s going to fix [their behavior]…that’s very attractive to anybody.”
What’s tougher for Stocco to swallow is how some physicians recommend their Pandas patients undergo plasma exchange or IVIG treatment. The former is dangerous, she says, and there’s a national shortage of the latter, so it’s hard enough for the folks with life-threatening diseases who need IVIG to survive.
If more Pandas patients are being pointed toward such extreme treatments, UT Health Science Center’s Butler may know why.
He says that while Pandas researchers have come up short in the evidence department, there’s one arena where they’ve shined: “I think the proponents of Pandas have done a terrific public-relations job,” he says. “And it’s been, I think, very confusing to parents and physicians.”
For Gloria, it’s the Pandas skeptics who are the confused ones.
A Sugar Land parent of a kid treated by Doctor, Gloria says her younger son’s Pandas is real enough that it nearly got him killed.
“Gloria” isn’t her real name; she asked for her and her son’s privacy to be protected, partly because of things like this: In the summer of 2013, her then-12-year-old son, Matthew, flew into a rage, smashed whatever glass objects he could in the house, picked up one of the shards and threatened his family. His older sister and her baby were visiting, and while Gloria shuttled them outside, Matthew barricaded himself inside.
Up until that point, the rages were bad but not waving-glass-shards-around-a-baby bad, and Gloria and her husband were able to maintain control.
Matthew was diagnosed with bipolar disorder before the age of ten, Gloria says. Before puberty, Gloria says, Matthew’s Pandas symptoms included ADHD-like behavior and a sudden decline in math and handwriting abilities. Ultimately, she says, Doctor remedied these with antibiotics.
But when Matthew turned 12, Gloria says, she discovered that “boys, testosterone and Pandas — yucky mess.” The kid went full-tilt Jekyll and Hyde. He started having what Gloria calls his “rages” — bouts of animalistic aggression in which Matthew would growl, his eyes would dilate and the skin on his face would go slack.
When this happened, Matthew’s parents forced him onto their king-size bed, which served as a kind of open-air jail cell. While Matthew stalked and growled and acted like a beast, his parents patroled the bed’s perimeter and tossed rolled-up pairs of socks onto the bed so Matthew would have things to throw that wouldn’t cause a concussion. These rages could last as long as two hours. Afterward, Gloria says, Matthew would have no recollection of these episodes. But his parents told him what had happened, and he would refer to that version of Matthew as his monster.
“There’s the monster,” Gloria says, “…and there’s my son.”
Gloria and her husband would record the rages, email them to Doctor and promptly delete them.
Doctor explains the rages like this: “Whenever that area of brain gets inflamed, it releases…massive amounts of dopamine, and that’s tantamount, basically, to taking hits of crack.”
So the monster was raging especially hard that day in 2013, with the glass shard in his hand. Gloria called 911, a decision she now regrets. She was hoping for a couple of police officers and an ambulance. Instead, she says, she got the cavalry.
“The first police officer on the scene threatened to shoot him,” she says.
She tried her best to explain Matthew’s situation to the officers, which worked well enough that her son was safely taken to Houston Methodist Sugar Land Hospital. His next stop was limbo.
“As soon as everybody heard that it was a medical illness with psychiatric symptoms, West Oaks [psychiatric facility] won’t take him, because it’s a medical illness,” Gloria says. “And the medical hospitals won’t take him because it’s a psychiatric illness.”
Matthew is better today, according to Gloria. She’s weaning him off antipsychotics but continuing with antibiotics. Matthew has been an extremely difficult case not just for Gloria but for Doctor as well, a sort of medical moving target requiring trial and error. As Doctor says, “My biggest teachers have been my patients and my mistakes.”
A year has passed since that particularly bad rage. That, Gloria says, was the last time anyone has seen the monster.
“I can’t believe more people just don’t educate themselves enough on it,” Candi says of Pandas.
Her incredulity even extended, at first, toward immediate family.
“My husband was the worst. ‘Candi, you’re just trying to find something,'” she says. But that changed after he saw Reagan shed eight years of complications in four days.
“I feel like my daughter has been completely cured,” Candi says. Since then, Candi has become a kind of Pandas preacher, spreading the gospel. Converts are hard-won, though. She says that Reagan’s pediatrician was amazed by the girl’s success with antibiotics, but that the doctor recently told a friend of Candi’s — also a patient — that she still wasn’t convinced.
Candi feels it’s just a matter of more doctors learning about the illness. If a physician doesn’t know, how can the patient? People want a doctor to sit them down and explain to them the medical certainty. But Candi says she’s got plenty of proof to share with others. And that’s Reagan.
“I’m always willing to listen to people who don’t believe it,” Candi says. “And usually by the time they’ve heard my story…they’re like, ‘I don’t see how anybodycan’t believe it.'”