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Dr. Kyle Williams.Mass General Brigham<\/p>\nThe announcement came less than three months after the hospital system told families it plans to shutter its PANS\/PANDAS program offered through Mass General Brigham for Children in January. At the time, the hospital suggested patients could continue treatment through MGB even after the closure. <\/p>\n
Parents and advocates say Williams is one of two MGB doctors who primarily treat PANS\/PANDAS patients.<\/p>\n
In a statement to The Globe, MGB said the message about Williams was sent to patients in error and \u201cdid not accurately reflect Mass General Brigham for Children\u2019s plans for continuity of care.\u201d But MGB confirmed that Williams would leave at the end of the year. <\/p>\n
\u201cWe recognize that the recent communication may have created confusion for patients and families, and we regret that,\u201d 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.<\/p>\n
Williams did not respond to an interview request.<\/p>\n
Jennifer Vitelli, executive director of the Look. Foundation, a Massachusetts-based PANS\/PANDAS advocacy group, called Tuesday\u2019s message \u201cincredibly confusing.\u201d<\/p>\n
\u201cWe are 65 days from closure, and PANS\/PANDAS patients and their families are still in limbo,\u201d Vitelli said. \u201cA list of providers they may not be able to access or afford is not continuity of care. They need specific physician names, referrals, appointments, and a clear plan now.\u201d<\/p>\n
MGB\u2019s PANS\/PANDAS program is one of the few of its kind nationwide that aims to address the condition\u2019s medical and psychiatric concerns, and the decision to close it sparked widespread anger and fear among parents. Many said they didn\u2019t understand why the program was ending.<\/p>\n
The news of Williams leaving the hospital raised additional concerns about whether patients can still receive treatment at MGB. <\/p>\n
Dr. Kyle Williams.Mass General Brigham<\/p>\n
The notice that went out Tuesday included five options for alternative care. One was a link to a neuroimmune psychiatric disorders clinic<\/a> at Dartmouth Health Children\u2019s in Lebanon, N.H. It also listed Dr. Yujuan (Julia) Zhang, a well-regarded pediatric rheumatologist at Tufts Medical Center, who previously told The Globe that she has seen more than 580 PANS\/PANDAS patients in the last two years and has a months-long waiting list for new patients. Some parents said the options provided by MGB would likely require families to travel long distances or pay out of pocket for treatment.<\/p>\n \u201cThis is a joke list,\u201d said Kim Panton, a PANS\/PANDAS advocate and Duxbury resident whose two adult sons were diagnosed with the condition as children and received care at MGB.<\/p>\n Finding care has long been challenging for families.<\/p>\n Treatment consists of first dealing with the trigger, if it\u2019s still present. Patients might receive antibiotics or anti-inflammatory treatments, such as ibuprofen. People with more severe cases may require infusions of healthy antibodies, a treatment known as intravenous immunoglobulin, or IVIG. While patients are being treated for the inflammatory problem, doctors might also simultaneously treat behavioral symptoms, with cognitive behavioral therapy or other kinds of therapy and medication, including antidepressants. <\/p>\n Jessica Purcell, a mother of two children with PANDAS receiving care at MGB, said Williams was instrumental in getting her kids access to antibiotics and anti-inflammatories.<\/p>\n \u201cWithout him, we wouldn\u2019t be on the right track,\u201d said Purcell, who lives in Hanson. \u201cI have no idea what we\u2019re going to do.\u201d <\/p>\n Parents and PANS\/PANDAS providers say many health care professionals are either not familiar with or, in some cases, skeptical of the diagnosis and treatment. Sick children, for instance, are often initially referred to psychiatric services.<\/p>\n The American Academy of Pediatrics called PANS \u201clikely a valid diagnosis\u201d in a recent clinical report<\/a>, but said more research on the condition is needed and raised concerns about widely used treatments. The AAP considers PANDAS a subset of PANS.<\/p>\n In Massachusetts, the law requires insurance<\/a> to cover care for PANS and PANDAS, including the treatments the AAP cautioned about.<\/p>\n MGB said it has other providers with expertise in the psychiatric treatment of PANS\/PANDAS. Existing patients will continue to have access to that care as well as \u201cother multidisciplinary clinicians as clinically appropriate,\u201d the hospital said. <\/p>\n In response to previous questions from the Globe about the treatment program\u2019s closure, MGB said at the time it would continue to provide care through the hospital\u2019s child and adolescent psychiatry department, pediatric infectious disease specialists, and primary care providers.<\/p>\n \u201cWe recognize that children diagnosed with PANS\/PANDAS can experience severe and disabling symptoms, with a profound impact on them and their families,\u201d MGB said. The decision to close the program \u201cdoes not mean that we are dismissing these children\u2019s symptoms or their need for care.\u201d<\/p>\n But many parents say they are still concerned whether their children will be able to have access to antibiotics and other immunotherapies, such as IVIG, if they stay at MGB.<\/p>\n \u201cThis is a medical issue,\u201d said Panton, whose son recently experienced a return of symptoms and needed IVIG treatment. \u201cThe psychiatric part is critical. It\u2019s really important to help manage the psych symptoms until they can get the medical part of this under control. You\u2019re looking at a two-prong approach to dealing with PANDAS kids.\u201d <\/p>\n Allyson Chiu can be reached at allyson.chiu@globe.com<\/a>. Follow her on X @_allysonchiu<\/a>.<\/p>\n