The announcement came less than three months after the hospital system told families it planned to close its PANS/PANDAS program offered through Mass General Brigham for Children in January. At the time, the hospital suggested that patients could continue their MGB treatment even after the closure.
Parents and advocates say Williams is one of two MGB doctors who primarily treat PANS/PANDAS patients.
In a statement to the Globe, MGB said the message about Williams was sent to patients in error and “does not accurately reflect Mass General Brigham for Children’s plans for continuity of care.” But MGB confirmed Williams would leave at the end of the year.
“We recognize that the recent communication may have created confusion for patients and their families, and we regret this,” the hospital said. MGB added that it is working to provide more information directly to families to help them understand what care options are available to them.
Williams did not respond to an interview request.
Jennifer Vitelli, executive director of The Look. Foundation, a Massachusetts-based PANS/PANDAS advocacy group, called Tuesday’s post “incredibly confusing.”
“We are 65 days away from closure, and PANS/PANDAS patients and their families are still in limbo,” Vitelli said. “A list of providers that they may not have access to or cannot afford to pay for does not constitute continuity of care. They need specific doctor names, referrals, appointments and a clear plan now.”
MGB’s PANS/PANDAS program is one of only a handful of such programs nationwide that aims to address medical and psychiatric issues related to the disease, and the decision to close it has sparked widespread anger and fear among parents. Many have said they didn’t understand why the program was ending.
News of Williams’ departure from the hospital raised additional concerns about whether patients can still receive treatment at MGB.
The notice released Tuesday included five alternative care options. One of them was a link to a neuroimmune psychiatric disorders clinic at Dartmouth Health Children’s in Lebanon, NH. It also mentioned Dr. Yujuan (Julia) Zhang, a renowned pediatric rheumatologist at Tufts Medical Center, who previously told the Globe that she had seen more than 580 PANS/PANDAS patients in the past two years and had a months-long waiting list for new patients. Some parents said the options offered by MGB would likely require families to travel long distances or pay out of pocket for treatment.
“It’s a list of jokes,” said PANS/PANDAS advocate and Duxbury resident Kim Panton, whose two adult sons were diagnosed with the illness as children and received care at MGB.
Finding care has long been a challenge for families.
Treatment involves treating the trigger first, if it is still present. Patients may receive antibiotics or anti-inflammatory treatments, such as ibuprofen. People with more severe cases may need healthy antibody infusions, a treatment called intravenous immunoglobulin, or IVIG. While patients are being treated for the inflammatory problem, doctors may also treat behavioral symptoms simultaneously, with cognitive behavioral therapy or other types of therapy and medications, including antidepressants.
Jessica Purcell, a mother of two children with PANDAS who were treated at MGB, said Williams was instrumental in getting her children access to antibiotics and anti-inflammatories.
“Without him, we wouldn’t be on the right track,” said Purcell, who lives in Hanson. “I have no idea what we’re going to do.”
PANS/PANDAS parents and providers say many health care professionals are unfamiliar with or, in some cases, skeptical about diagnosis and treatment. Sick children, for example, are often initially referred to psychiatric services.
The American Academy of Pediatrics called PANS a “probably valid diagnosis” in a recent clinical report, but said more research into the condition was needed and raised concerns about widely used treatments. The AAP considers PANDAS to be a subset of PANS.
In Massachusetts, the law requires insurance to cover the care of PANS and PANDAS, including treatments that the AAP has warned against.
MGB stated that it has other providers who are experts in the psychiatric treatment of PANS/PANDAS. Existing patients will continue to have access to this care as well as “other multidisciplinary clinicians, as clinically needed,” the hospital said.
In response to previous questions from the Globe regarding the treatment program’s closure, MGB said at the time that it would continue to provide care through the hospital’s child and adolescent psychiatry department, pediatric infectious disease specialists and primary care providers.
“We recognize that children diagnosed with PANS/PANDAS can experience severe and disabling symptoms, with a profound impact on them and their families,” MGB said. The decision to close the program “does not mean we are dismissing these children’s symptoms or their need for care.”
But many parents say they still worry about whether their children will be able to access antibiotics and other immunotherapies, such as IVIG, if they remain at MGB.
“This is a medical issue,” said Panton, whose son recently experienced a return of symptoms and required IVIG treatment. “The psychiatric part is key. It’s really important to help manage the psychological symptoms until they can get the medical part under control. You’re looking at a two-pronged approach to treating PANDAS children.”
Allyson Chiu can be contacted at allyson.chiu@globe.com. Follow her on @_allysonchiu.
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