Strep throat. Just those two words conjure up a heavy sigh from parents, who know that a diagnosis of the common childhood illness means three to seven days of swollen, infected tonsils, a high fever, and a lot of Popsicles for the sick child.
Luckily, though, strep throat—despite being incredibly contagious, noted by the way it can whip through an elementary school classroom in a matter of days—is highly curable with a quick round of antibiotics. Though the National Institute of Allergy and Infectious Diseases estimates there are more than 10 million mild infections per year, most people—particularly children—bounce back quickly.
Sometimes, however, strep bacteria doesn’t disappear. Instead, it goes into hiding, evading the immune system through “molecular mimicry,” in which the bacteria develops molecules on the cell wall so it looks nearly identical to the body’s own tissues, including the brain. Even strep can’t hide forever, though, and the immune system eventually recognizes the invasion. Because of the mimicry, though, there’s some confusion and the antibodies attack the child’s own tissues, according to the National Institute of Mental Health, a division of the National Institutes of Health. Research has found that some of those antibodies can attack the brain, causing neuropsychiatric symptoms such as OCD and tics—and a condition known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS.
The condition is so new—an NIMH investigator named it just 22 years ago in 1998—that it’s not well-known, or even widely accepted. That’s led to a bit of controversy about whether PANDAS is a legitimate medical condition, but parents of kids who have been affected are adamant—not only is PANDAS very real, it’s also quite devastating.
Grace Anne’s Story
Like so many students, Grace Anne Phillips, 14, of Stevensville, occasionally has to write about herself. This year, she chose to pen an essay about a condition, PANDAS, that’s changed her life.
“My family and I think I got PANDAS when I was about three years old,” Grace Anne wrote. “You might be thinking that I am breaking the law because keeping pandas in captivity without a license is illegal. The thing is, I am not talking about a black and white bear; I am talking about a neurological disease that very few people know about. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Now you might be thinking that that is a lot of big words, but what it essentially means is that it is a disorder that kids get in the brain and it is caused by strep. But something that all of these big words can’t express is that it is hard to live with.”
It was more than a decade ago when Grace Anne’s parents, Susan and Michael Phillips, noticed that something seemed off with their daughter. “Grace Anne had always been a high-energy child,” Susan remembers. “She was also a child who had strep throat, ear infections, and croup frequently.”
Susan recalls taking Grace Anne shopping with a friend at the tender age of four. Kids around this age are bound to act up every once in a while, but “there was a nagging feeling that this was not normal,” Susan says. “We were at Sears, and some small thing set her off. She was unreachable, she was talking about hurting herself, and she was hitting her leg violently.”
Then, as suddenly as the fit came on, it stopped. Grace Anne was a pleasant child again—until the next episode. “Mostly, she was a sweet girl with an explosive temper,” her mother recalls.
The fits became more frequent. Then they became worse. Months became years as the Phillips family did what they could to help Grace Anne through the rough times, first starting her on a mood stabilizer in January of third grade. “This helped, but gradually things continued to grow worse,” Susan says. “She was hurting herself frequently and would not sleep in her own room. In the middle of her ‘rages,’ she would run to the knife drawer—so we had to lock up the knives.”
Putting the Pieces Together
A couple years later, Susan’s mother was watching an episode of “The Doctors” on TV, and they started discussing a disorder—PANDAS. Noting the similarities to Grace Anne, Susan’s mother told her about what she had seen. Of course, Susan and Michael followed up on the lead, asking the pediatrician about the condition. They were met with blank stares, but were willing to order blood tests to see if strep bacteria was still lurking in Grace Anne’s body.
Those tests were enough to send the Phillips family to Dr. Beth Latimer, a pediatric neurologist in Washington, D.C., who specializes in PANDAS (according to Latimer’s website, PANDAS accounts for 70 percent of her patients). “It was a three-month wait to see her, she didn’t take insurance, and our out-of-network covered less than half of the cost, but it was the best appointment we have ever had,” Susan says. “Dr. Latimer put the many pieces together.”
Everything that Grace Anne had been struggling with over the years—the body aches, the cold sores, the psychiatric symptoms of anxiety, depression, OCD, suicidal thoughts, manic behavior, skin picking, and the academic symptoms of poor handwriting and visual processing disorder—these were all symptoms of PANDAS.
Dr. Latimer prescribed antibiotics for Grace Anne. Within one week, Susan says, they saw improvement.
A Controversial Condition
Unfortunately, antibiotics isn’t the end-all, be-all for treatment of PANDAS, and many parents can’t afford the cost of seeing a doctor that not only believes in the diagnosis of PANDAS but is willing to treat it. “There’s not a single doctor in Maryland that takes insurance and treats this condition,” says Katie Riesner, a Catonsville mother whose son, Henry, was diagnosed with PANDAS a couple of years ago. After antibiotics, the next step is to undergo intravenous immunoglobulin (IVIT) therapy, which averages about $10,000 per treatment. “You normally need multiple treatments, and insurance almost never covers it,” Riesner notes. “[Henry] has everyone in his corner, we have great insurance, and I cannot get it covered.”
Riesner is part of a support group, PANDAS Network, that’s working to change that. In early 2019, Riesner’s delegate, Charles Sydnor (D-Baltimore County) entered a bill during the legislative sessions that would require Medicaid to pay for IVIG as part of PANDAS treatments. The hope is that once Medicaid covers IVIG, private insurance would follow.
Parents from the PANDAS Network came together in support of the bill, testifying in front of the state legislature, writing to various professional organizations to try to get their support, and sharing research with government committees. “We are not lobbyists,” Riesner adds. “We are a group of special needs parents who have sick kids and jobs and are just trying to do the best that we can.”
Unfortunately, Snyder withdrew the bill during the session, but Riesner says it’s going to be reintroduced in the 2020 session. “It’s our hope that we are able to get this passed,” she says. “We had a good amount of support, and I think our testimony was very impactful.”
The Research Continues
If the effects of PANDAS are so debilitating, why are so many doors slammed in parents’ faces when they try to get a diagnosis, treatment, or insurance coverage? Simply put, some physicians don’t think there’s enough evidence to support the diagnosis. However, ongoing research suggests treatment can reduce the symptoms of PANDAS.
For example, a small study published in 2017 in the Journal of Child and Adolescent Psychopharmacology found that the antibiotic azithromycin may be helpful in controlling neuropsychiatric symptoms associated with PANDAS. However, additional research is needed to confirm its use in treatment.
For now, parents of children showing signs of PANDAS will continue to have to fight to make sure their little ones are getting the treatment that they need. “This is a David and Goliath situation that we’re in here,” Riesner claims. “Quick and proper diagnosis and treatment is absolutely key. They’re concerned about the cost of treating this, but the cost of not treating it is so much higher.”
