Things came to a head this summer when parents of an 11-year-old girl who was being treated for PANS took her to Children’s because she was no longer eating. Maine lawyer and PANDAS activist Beth Maloney got involved in the case at the request of the parents. She alleges that specialists at Children’s insisted to the parents that PANDAS doesn’t exist and discontinued her antibiotics, arguing that the girl’s problems were entirely psychiatric. As relations worsened, she says, the hospital stationed security guards outside the girl’s room, presumably to prevent the parents from interfering with their daughter’s care.
The 11-year-old girl was eventually released, but, Maloney says, the pattern was repeated in early October. This time, the lawyer received a panicked call from a father who had learned that child protective services was going to court seeking temporary custody of his 16-year-old daughter. The girl had arrived at Children’s with a PANS diagnosis, which the attorney claims the Children’s doctors rejected. The next day, Maloney found herself standing before a Suffolk County judge. “What we have is an argument within the medical community about whether infection can cause behavioral disorders and mental health issues,” Maloney recalls saying. “And Boston Children’s Hospital is going to work that out on the backs of parents in your courtroom.”
The judge, she says, granted the state temporary custody, although the parents have continued to have access to their daughter. Maloney, who wrote a book about her own son’s odyssey with PANDAS, acknowledges that this most recent patient does not fit the standard diagnostic requirement that symptoms show up before puberty. But she alleges the case reflects a wider hostility to the disorder at Children’s.
In a statement, the hospital rejected that allegation and similar complaints from parents about Children’s that have been lighting up PANS Internet message boards. “Boston Children’s treats hundreds of children a year displaying tics or obsessive or compulsive behaviors and other neuropsychiatric symptoms and always considers PANDAS/PANS as a potential diagnosis and provides care accordingly,” the statement read. “Among those patients, Boston Children’s has diagnosed and/or treated dozens of patients in the past year with PANS/PANDAS.”
Even for those kids whose doctors accept PANS and who respond well to antibiotic treatment, that’s often not enough. While antibiotics can kill off a live infection and help prevent future ones, many patients have trouble getting back to base line. A more escalated form of treatment is called intravenous immunoglobulin, or IVIG, which is a blood product made up of filtered antibodies from a mix of more than a thousand adult blood donors. The idea behind giving it to PANS kids is that it can help “reset” the child’s immune system so that it stops attacking phantom threats in the brain.
IVIG has shown some promising results in PANS patients, but there has been no rigorous trial. It also comes with side effects such as nausea and headaches and a hefty price tag — about $10,000 a course — which many insurers refuse to pay. Yale’s Leckman is running a randomized trial of IVIG in conjunction with the NIMH. To avoid repeating his earlier mistake, Leckman is being exceedingly careful to enroll only “true” PANS patients. After screening more than 500 children, he and his colleagues have qualified fewer than 30.
Leckman expects to report results next year and hopes the study will help remove some of the murkiness around the disorder. The early signs have been encouraging, he says. But if the final results show that IVIG is ineffective, he will have no problem accepting that they need to look for a different treatment. Still, that won’t change his belief that PANS is real. “I am convinced these cases exist,” he says.
My nephew and his parents certainly agree. This past summer, six months after his troubles began and not long after he’d been put on a heavy dose of the antibiotic clarithromycin, his condition improved markedly. By now, many of his OCD behaviors have departed, and much of his old self has returned. His parents are hoping a course of IVIG treatment will bring him all the way back. They shudder to think what might have happened had they heeded the early advice to treat their son’s diagnosed anorexia with the tough-love, forced-eating approach recommended for an illness typically afflicting high school girls, rather than seeing it as a sign that their third-grade boy’s brain was under attack.Continued...