After a difference of opinion with Boston Children’s Hospital about their child’s diagnosis and treatment led to a gag order and court appearance, a New York family remains embroiled in a legal battle for custodial rights of their daughter, and is fighting for her release.
Elizabeth Wray, 16, was diagnosed with Pediatric Autoimmune Neuro-Psychiatric Disorder Associated with Streptococcus, or PANDAS, earlier this year.
Now she is under the custody of the state at Children’s Hospital, and the family claims doctors won’t recognize the disorder or give her the proper medication.
According to the National Institute of Mental Health, PANDAS is triggered by sicknesses like strep throat and can lead to Obsessive Compulsive Disorder and body tics almost overnight.
It can also lead to bouts with anorexia or trouble eating, as it has in the case of Elizabeth, according to her family.
Elizabeth’s parents have been ordered to stay silent by a judge about their daughter’s condition, according to the family’s lawyer, and are not allowed to discuss her current state with the media, or the immediate family, until court matters are settled.
They are scheduled to reappear in court before a judge on October 23, according to family members.
“The court has issued a temporary gag order necessitating no further comments or discussions by my clients or me, and the deletion of prior references on my facebook fan pages, to a child in the care of Boston Children’s Hospital. Both my clients and I will comply with the order,” the family’s lawyer, Beth Alison Maloney, wrote on her Facebook page.
But Elizabeth’s grandfather, Jeff Wray, told BostInno on Thursday that his granddaughter’s condition is deteriorating and all he wants is the proper care for the child.
“If they don’t want to treat her, fine,” said Wray. “But all we are asking is that they allow us to bring her some place she will be treated [for PANDAS].”
After she first arrived at the hospital last month, Wray said doctors at Children’s told the family that Elizabeth’s conditions were psychiatric in nature and not medical and suggested placing her in a psychiatric ward.
The family began working with specialists outside of Children’s Hospital after the hospital allegedly refused to administer antibiotics to treat PANDAS, according to Wray.
On Sept. 29 the family was allegedly told by doctors that Elizabeth was clear to be transferred to another hospital.
However, the following Monday, they learned the hospital contacted Massachusetts Child Protective Services and urged them to file for temporary custody of Elizabeth and admit her to a psych ward at BCH, Wray claims.
The family was told to appear in court Tuesday, October 2, for a custody hearing “based on allegations made by BCH,” the lawyer said in an email sent to supporters.
According to the family’s lawyer, following the hearing, the judge specifically instructed Elizabeth not be moved to the hospital’s locked psych unit, but still granted the state care of the girl.
A few days later, a gag order was placed to bar comments about the case on the internet after parents became outraged.
Controversy surrounding the judge’s alleged decision to grant the state temporary custody of Elizabeth led to a firestorm of complaints on the Children’s Hospital Facebook page, despite a lack of information about what went on in court.
Mothers and fathers of children who have also been diagnosed with the rare disease flooded the hospital’s timeline.
A spokesman from Children’s Hospital said due to federal regulations, he couldn’t discuss Elizabeth’s care, however, he did acknowledge the influx of comments on the hospital’s social media page, and said the hospital does treat PANDAS, contrary to Facebook claims and the family’s remarks.
“Recent online activity has suggested that Boston Children’s does not consider PANDAS and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) to be legitimate medical disorders. Boston Children’s takes every patient care situation very seriously and provides a careful and thoughtful diagnosis based on clinical evidence so that every patient gets the treatment he or she needs,” according to a statement from the hospital. “This includes diagnosing and treating conditions such PANDAS/PANS.”
On Thursday, groups of protesters stood outside of Children’s Hospital on Longwood Avenue holding signs that said “Free Elizabeth Wray,” and handed out pamphlets of information to passerby.
A “Free Elizabeth Wray” Facebook page was also set up, and parents have been showing their support for the family by commenting on the current situation. A petition was also started online and backed by thousands of supporters.
Lynn Johnson, Executive Director of the PANDAS Resource Network, flanked activists trying to raise awareness about the family’s legal battle on Thursday.
“We are talking about the medical needs of a child and putting it in the hands of judges and social workers,” said Johnson, whose daughter gained national attention after her battle with PANDAS went public.
Johnson said protests will continue this week, and over the weekend, as the family waits for answers.
“I am here to offer financial and moral support and hopefully come up with some kind of solution,” she said.
On her blog, Johnson wrote that the outrage Children’s Hospital faced from parents on their Facebook page was a culmination of frustration over difficulties getting their children’s disorder “diagnosed and treated,” and being met by “dismissive attitudes among doctors, struggles over insurance company payments, and mistreatment.”
Wray called the situation with his granddaughter “terrible,” and described Elizabeth as a “multi-talented” girl who played sports and rode horses.
“[Her parents] have spent a lot of years to raise their daughter the best they could,” he said. “She lived an ideal life until she was diagnosed.”
He said he is “not unaware” of the state’s power, but he “is astonished by the lack of scruples of Boston Children’s Hospital.”