Child With PANDAS Custody Taken from Parents via Boston Children’s Hospital

These are the shell shocked faces of parents who have been put through hell at the hands of Boston Children’s Hospital. According to their attorney Beth Maloney, they did absolutely nothing wrong. “They are caring, lovely people whose daughter was diagnosed with PANDAS/PANS by two different physicians, and they diligently sought appropriate treatment for her.”

She goes on:

“Their daughter Elizabeth was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child’s antibiotics, reported the parents to Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children’s services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit.”

This is sickening. So very sickening.

Please forward this to everyone you know. Parents who are dealing with PANDAS are going through so much. To have their child taken from them, by ignorant doctors who claim the condition doesn’t even exist?

And that child? What’s she going through?

Please pray for this family. And I would not take your children with PANDAS to Boston Children’s Hospital.

Here is the PR address at BCH should you feel the desire to write them an email on behalf of the Wray family, Carrie and Jay and their daughter Elizabeth.

public.affairs@childrens.harvard.edu

*Please read comment section. At least one parent says her child with PANDAS received quality care at BCH. I will be interested to learn more as this story unfolds. I do trust Beth Maloney though. She is a very strong advocate for kids with PANDAS.

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46 Responses to Child With PANDAS Custody Taken from Parents via Boston Children’s Hospital

  1. kario says:

    Ugh. I’m so sorry for them – all of them. I hope that someone who understands PANDAS and is a medical professional can intervene on behalf of the child and her parents. Holding them in light.

  2. run from Children's! says:

    Here is just one of several cases at Children’s Boston regarding a child’s death over the years due to sheer negligence. Look up their record. I know another child died from sheer negligence there in 2004 and there were other cases. The state was concerned at the time from what I remember. Children’s is the LAST place I would take my child. They are arrogant and bullying. Also note, they are very tied to NECC, an autistic school that forbids biomed, believes 100% in vaccines and rejects any child whose parents goes against their belief.
    Mass. is sickening on so many levels and Children’s is just one of them.

    A death at Children’s reverberates

    State review finds system problems

    By Anne Barnard, Globe Staff, 8/7/2001

    Taylor McCormack needed routine surgery to relieve pressure on her brain. It was Saturday night. A resident at Children’s Hospital told her parents that the operating rooms were full, and “the team” had decided to postpone surgery until 8 a.m.

    The McCormacks weren’t happy, but decided to trust the hospital that had treated Taylor at birth, 13 months before. Surgeons there had implanted a tube to drain excess fluid from her skull. Now, that tube needed replacing, and Taylor’s mother lay down by her bed to wait.

    But, around 6:20 a.m., Taylor stopped breathing. Her mother ran into the hallway, shouting, “She’s blue!” A doctor who had come to prepare her for surgery hit the emergency “code” button instead. A team rushed to Taylor’s side, but she suffered brain damage. She died six days later.

    The death of Taylor McCormack offers a window into the difficult, often painful process of finding the causes of medical tragedies. No one can say for sure whether Taylor would have lived had things been done differently. But in a report completed last week, state public health officials found systemic problems that may have contributed to her death, some of which were also noted in an internal hospital review.

    Taylor should have spent the night in an intensive care unit for closer monitoring, the officials concluded in the report, which Taylor’s father provided to the Globe. Test results showing critically low carbon dioxide in her blood, a sign of breathing trouble, were not written that night on her chart.

    And the senior physician in charge of her care, Dr. Craig van Horne, forgot that his pager was set to “vibrate” and fell asleep on his couch. He slept through several pages, leaving two neurosurgery residents — “the team” — to call the shots on their own.

    Taylor’s death was “something that should not have occurred,” said Nancy Ridley, who oversees hospitals for the Department of Public Health.

    “In hindsight, the case required more rapid and intensive care,” wrote a physician who reviewed the case for the report. “The resident staff acted as their best judgment indicated,” the physician added, noting that the residents should have tried to contact another attending doctor for advice. “The residents should not have managed this case alone.”

    To public health officials, the case is a classic example of how systems, not individuals, are mainly responsible for hospital errors, which a 1999 federal report blamed for 98,000 deaths a year. Taking the focus off individuals, they believe, encourages doctors to be honest about mistakes.

    At the same time, talking about systems does not capture how the death has devastated the people involved.

    Since Taylor died Oct. 6, her father, John McCormack, a state trooper from Pembroke, has spent much of his time relentlessly seeking to hold Children’s Hospital accountable.

    “I don’t want this happening to another child or another family,” said McCormack who is considering a lawsuit against the hospital.

    McCormack has filed complaints with the state medical board against Dr. Tien Nguyen, the fifth-year resident who examined Taylor; Dr. Adel Malek, the chief resident who advised Nguyen by phone; and van Horne, an attending neurosurgeon at Brigham and Women’s Hospital who was covering Children’s that night.

    In letters to the board, the three said Taylor received appropriate care and was stable until her condition suddenly deteriorated.

    The death has sparked policy changes, and soul-searching, at Children’s Hospital, which was named the nation’s top pediatric hospital for the 12th straight year by U.S. News & World Report and has been a leader in the movement to prevent errors in Massachusetts. People involved were “traumatized,” Ridley said.

    “They’re very shook up,” Ridley said. “They’re just beside themselves that this happened.”

    According to John McCormack, Dr. Mark Proctor, who was called in to operate on Taylor after her respiratory arrest, told him and his wife, “Children’s Hospital failed you and they have to change their policies and procedures.”

    Dr. Adre Duplessis, who cared for Taylor while she was in a coma, asked McCormack for a picture of the brown-eyed girl, who had just learned how to sing “Bye Bye Bye” along with ‘NSync. Duplessis has the picture on his office wall, his wife said in a brief phone interview.

    Hospital officials and doctors, citing ongoing proceedings, declined to comment beyond a brief written statement, saying everyone involved is “profoundly sorry that Taylor died while in our care.”

    “While we do not believe the actions of any one individual or system are responsible for Taylor’s death, we do want to learn from this tragic event and do everything possible to avoid such an event in the future,” it said.

    Nguyen and van Horne did not respond to e-mails, telephone messages, and faxes. Malek declined to comment for this story.

    The hospital plans changes in policies relating to communication between doctors, operating room scheduling, the settings of monitor alarms, and resident orientation, the report says. The hospital may file a response to the report up to Aug. 13.

    It was the most glaring medical errors that first drew media attention, such as the death of Boston Globe columnist Betsy Lehman from an overdose of chemotherapy drugs at the Dana-Farber Cancer Institute in 1994, or the removal of the wrong kidney from a patient at Quincy Hospital in 1996. But the vast majority of preventable deaths in hospitals come in more complex situations, as doctors and nurses make multiple decisions “in the heat of battle,” Ridley said.

    In such cases, it’s hard even to know what deaths are preventable, researchers argued in a study published last month that challenged the 1998 Institute of Medicine report, saying it overestimated how many deaths resulted directly from errors.

    For McCormack, there’s only one error that matters: his decision not to question the postponement of Taylor’s surgery.

    With his buzz cut, receding hairline, and Ray-Bans, he looks something like a stockier Bruce Willis. During an interview, he turned red, and his eyes filled with tears. “Sometimes,” he said, “I blame myself that I let her down.”

    Taylor was born Aug. 23, 1999. She had hydrocephalus, a condition in which excess fluid presses against the brain and can cause mental retardation if not treated. Annually, around 10,000 children have shunts implanted to drain the fluid into the abdomen or elsewhere. They can usually live normal lives, but parents must be vigilant for blockages that can happen as the children grow.

    Family videos show Taylor grinning in the arms of her brothers, ages 4 and 8. “Where’s my pretty girl?” her mother croons behind the camera as Taylor chews on her fists. By her first birthday, she is grabbing McCormack’s baseball cap and shouting, “Dad-DEE,” or propelling herself across the floor in a sitting position, her patented “scoot.”

    On Saturday, Sept. 30, 2000, her parents believed her vomiting and lethargy were signs of a shunt blockage. They say Nguyen, after first discouraging them on the phone, said they could bring her in. They arrived around 7:15 p.m.

    Taylor was scheduled for surgery that night. But sometime after 10 p.m., Nguyen told them she had been “bumped” to the morning. There were four more urgent cases ahead of her, he said.

    Blood tests were taken that later showed the critical carbon dioxide levels. It’s unclear whether the lab failed to report them, or if bedside staff failed to note them.

    Taylor was taken to Nine North, a neuroscience floor. Nurses took her vital signs at 12:40 a.m. and 4 a.m., not frequently enough, according to the DPH reviewer. She was on a cardiac monitor, but in the ICU, Ridley said, more complex monitoring might have caught her decline.

    After Taylor became comatose and was sent to the ICU, her father railed against the hospital, once even threatening to kill the doctors and prompting a call to security. Proctor, who operated on the baby, held a staff meeting “to get to the bottom of it,” McCormack said another doctor told him.

    Finally, DuPlessis told the family Taylor would never recover. They unhooked her respirator, and three hours later, she died. McCormack walked her body to the hospital morgue.

    Her brother Stephen has a plan, McCormack said.

    “He said, ‘Daddy, I’m going to climb up to heaven, put a Band-Aid on Taylor’s head and bring her back.’ “

  3. naomi says:

    This is awful. It is hard to backtrack on arrogant decisions, but hopefully BCH finds the humility to acknowledge their horrendous abuse of medical authority and return this child to her family. Praying and hoping.

  4. Dee Ready says:

    Dear Michelle, the hospital here in Independence was once like the Boston one you and “One from Children’s” describe. But that was seventy years! This is unconscionable. Peace.

  5. melissa K says:

    I too had a bad experience with Childrens. My son was seen by Dr. Rooney, a neurologist. I told her my son had PANDAS and she basically told me to stay off the internet…..3 month later I had to bring my son to the NIH for a diagnosis. he was finally diagnosed with CLEAR CUT CLASSIC PANDAS. BCH totally dropped the ball. They need to step up. I shouldnt have to travel out of state to get treatment. Here inbostonwe are SUPPOSED to be the best place in the world for medicine.

  6. L says:

    My daughter and I had a horrible experience at Children’s. The doctor was dismissive and arrogant. My daughter ended up being treated for PANS by someone else after months of suffering.

  7. dmn says:

    What BCH has done to this family and child is a complete disgrace. Imagine this child with PANDAS pulled from her parents arms and sent to a strange place. My PANDAS child would be scared out of her mind. PANDAS is real!! It can affect different kids in different ways. This family went to BCH looking for HELP for their daughter. No PANDAS child or parent deserves this kind of treatment. When are all of the doctors going to get it…there are hundreds, maybe thousands of kids suffering with this disorder!!!! Shame on you BCH!!!!!!

  8. Karen Durm says:

    Once again, the medical community refuses to acknowledge the big white elephant in the room. LYME DISEASE. I will bet my life that this poor child is a victim of this invisible disease, yet is paying the ultimate price. God help us.

  9. Kathy says:

    Something is wrong with this story. My child was diagnosed with PANDAS at Children’s Hospital Boston and they were strong advocates for her.

  10. MA PANDAS MOM says:

    melissa K and others in the Boston area, please know that MGH fully recognizes PANDAS/PANS. The Head of Pediatric Infectious Disease, Mark Pasternack diagnosed my daughter. There is a very good alternative for us here in Boston.

  11. Michelle O'Neil says:

    Kathy, that is interesting. I’m wondering if it is a specific doctor that “doesn’t believe” in PANDAS and not the hospital as a whole? Attorney Beth Maloney said this is the second recent case of similar treatment of a PANDAS kid at BCH.

  12. MA PANDAS MOM says:

    Michelle O’Neil, its Boston Children’s as a whole. Its is well known in the area for not recognizing PANDAS. Taking kids into custody is a new level of not recognizing the disease, however. Its very hard to do, and will be interesting to hear what has happened and what happens here. HIPAA laws might get in the way of some of that. Sad that they went to Children’s. Just an awful situation.

  13. Dawn Curtis says:

    This is not merely disagreement about medical treatment. This is human rights abuse. When a group of doctors becomes so obsessed with proving their own ideas that they are willing to hold a child hostage to do it, they need to be stopped.

  14. Sinsunny Elko says:

    This is so sad, the parents only did exactly what we would have done for our children. We should not have to be terrified of asking for help from the medical community. Our thoughts are with them, and we will do as much as we can to help. Keep updating what you would like done.

  15. Tami says:

    “…. BCH immediately decided that Elizabeth’s issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a **gluten & dairy free diet**, BCH immediately introduced both….”.

    There’s your problem, right there. Their daughter was on the autism spectrum.

    GF/CF diets are for wacky parents right? (sarcasm) The DSM makes it clear that if you have an autism label, everything that happens is JUST AUTISM. So, the idiot doctors are refusing to treat pandas/pans, because she doesn’t have it- it’s JUST AUTISM. I’ve written to Dr Jenike and Sue Swedo and asked them to please write, publish or post SOMETHING- ANYTHING that makes it clear that children diagnosed with autism can and DO get PANDAS or PANS. Neither were willing to do that. They have the power to provide this information so that children like Elizabeth (and my son, who almost got the same treatment as Eliz did) won’t be given the CPS- munchhausen’s treatment from ignorant physicians using decade-old information.

    Those who have the research funds, the notariety and the tools at their fingertips, have all dis-included kids with “autism” in their studies, from their posts, from their websites- because they want a “clear” diagnosis- child was typical on Tuesday, then pandas on Wednesday. Autism is a sad truth- with a not so clean and clear cut “safe” area to research. Kids with “regressive autism” are severely damaged- and not born that way. Researchers and doctors brave enough to actually treat these kids for their underlying medical issues that cause the autism quickly find out that these kids suffered mitochondrial and immune system damage due to the CDC’s aggressive vaccine schedule. Most Physicians run from actually treating our kids because they don’t want to “go there”. CYA, ya know?

    In Sept, there’s lots of pandas/pans flares, because all of the kids getting back to school vaccines- including nasal flumist and H1N1- those are live virus vaccines that SHED onto other students for up to 3 weeks after someone gets one shoved up their nose. They are the gift that keeps on giving (sarcasm). Kids with pandas/pans have permeated blood-brian -barriers- as shown in Dr Cunningham’s work. Being near a kid who got a live-virus vaccine can and DOES cause catastrophic pandas/pans episodes. Any person who gets a nasal flumist or nasal H1N1 can infect someone with pandas/pans (our kids have immune system damage equivalent to HIV/AIDS) for up to 3 weeks (that’s on the pkg insert) and from as far away as 100 feet- anyone within coughing, sneezing, breathing room- and anyone touching the same surface the infected person touches. Search “how far can a sneeze travel”. Answer: it only takes one kids in a classroom or hallways to infect a pandas/pans kid. Consider yourself informed. (warned?).

  16. Excerpts from a recent mass email from Beth Mahoney:

    “Things are not good with Elizabeth. She remains at Boston Children’s Hospital. BCH still refuses to recognize that its “treatment” is a complete failure. She continues to decline. She can no longer walk. She barely speaks. Earlier this evening, I listened to her screaming and wailing in the background from her bed as her brokenhearted father tried to bring me up to date.”

    ~~

    “I want to be 100% clear that these parents did NOTHING wrong. They took the exact same steps that you or I would have taken to help our children. This could have happened to any one of us. They are living every parent’s nightmare…losing custody of their child for trying to do the right thing. And these parents need your help.

    The Wrays have given me written permission to share the following information with all of you and the media.

    Briefly, Elizabeth was diagnosed with PANDAS by two doctors in NY February 2012. It first showed up as trouble eating. Blood work showed mycoplasma and Lyme. With antibiotic treatment she improved and did well over the summer. But she took a dive in early September. Her parents took her to a hospital near them, but the hospital felt she needed more than it could offer. There were two possibilities suggested: Rochester and Boston Children’s. The parents wanted her to go to the first place that had a bed; that was at Boston Children’s so she went there. BCH immediately decided that Elizabeth’s issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a gluten & dairy free diet, BCH immediately introduced both. She has had a spinal tap, EKG, EEG, MRI and many, many other tests. The parents were never given any test results. They were told there were “irregularities” in some tests, but they
    have not been informed what those irregularities are so they still have no idea. Last Thursday and Friday, the hospital told Jay that Elizabeth was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Rogers Hospital to figure out where would be best for Elizabeth to go. As far as Jay knew, BCH was on board and helping him figure this out. Then on Monday evening at about 5:30 pm he was told to be at Court the next morning when the State would attempt to take custody based on allegations made by BCH. We were in Court Tuesday morning.

    The State has been placed in charge of Elizabeth’s care (because it has custody), but the Judge specifically instructed that she may not be moved to the hospital’s locked psych unit. I do not fault the Judge for his decision on temporary custody. It’s hard to explain in a few sentences… but when a Judge is confronted with the kind of accusations that were leveled against the Wrays, it would have been very difficult for him to simply dismiss the petition (although I tried to get him to do that). He heard me though, and he protected her as much as he felt that he could – given the circumstances – by specifying that she should not be moved pending his final decision. We are scheduled to go back to court on October 23rd. Her parents are in agony knowing that she may suffer for another three weeks at BCH.”

    You can email the hospital here: http://childrenshospital.org/email.cfm?s=1394&c=7&u=webteam

    or call: 617-355-6000 to express your support of The Wray Family.

  17. Ron Dixon says:

    My wife and I are outraged at the barbarousness of the medical staff at BCH and we will call and we will send emails to BCH stating just that. What is this? The 1940′s? This is so ignorant on so many levels. We are grateful to have All Children’s in St. Pete, FL so close to us. Our daughter is under the care of Dr. Tanya Murphy at the Rothman Center and she has been an absolute blessing. Every Children’s Hospital needs to be on board with this. If you’re a doctor and don’t know about PANDAS/PITAND (PANS) then here’s an idea, call someone that does! Call the Rothman Center; they share information. That’s how one progresses!
    http://www.allkids.org/body.cfm?id=885&fr=true

    Our thoughts and prayers go out to the Wrays. May this be resolved sooner than later.

  18. Michelle O'Neil says:

    Beth Maloney adds:

    “Many of you have asked if you can help with a donation. Jay wants to be clear that he is, “not the type to ask for money,” but if you want to help he will gratefully accept. He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years. His family home is more than five hours from Boston. His family has living expenses in Boston, a huge liability for all the “co-pays” that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight. He asks that checks be made to C/O Beth Maloney Esq. Trust Account and indicate “for Elizabeth Wray” on the check. The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046

  19. Jen says:

    So sad. If I were there I would participate in some kind of demonstration outside the hospital. Best wishes to the family.

  20. Jennifer says:

    “but when a Judge is confronted with the kind of accusations that were leveled against the Wrays, it would have been very difficult for him to simply dismiss the petition (although I tried to get him to do that). ”

    No one has talked about what the exact allegations against the family were, but it seems they must have been more serious than just a disagreement over treatment protocol. This is just speculation on my part, but would a judge really take custody away because the parents are choosing to treat an illness diagnosed by MD’s that the National Institute of Mental Health acknowledges?

    I found this last night and wonder if it explains why those at BCH would be so quick to accuse parents of whatever the accusations are.
    “Children’s Hospital doc arrenst on child porn charges:”
    http://boston.cbslocal.com/2012/09/21/childrens-hospital-doctor-charged-with-child-porn-due-in-federal-court/
    http://bostonherald.com/news/regional/view/20220913childrens_hospital_doc_arrested_on_child_porn_charge

    Could the fact that those at BCH have just found out they had a wolf in sheep’s clothing in their midst, and never knew it, cause some to make UNFOUNDED accusations against the parents? I know when these kids are at their sickest, they can look neglected and even abused to the untrained eye. No one has stated that PANDAS treatment is the reason the child was removed from the parents’ custody – everyone is just assuming that. Maybe the allegations are much more serious, as Beth Maloney hinted, and were triggered by the hospital’s experience with Dr. Keller.

  21. Marcia Hinds says:

    What happened to Elizabeth Wray’s family could have happened to any of us with children with autoimmune diseases. We put our trust in the hospitals and doctors to help us with our children’s medical problems. Yet, Boston Children’s Hospital chose to call CPS and put her back on gluten and dairy when she was already so ill. If we cannot trust an institution like BCH to help us with our critically ill children, who can we trust? They need to make this situation right and help return Elizabeth to her family.

    The word is out on the internet to not take your child with PANDAS or any autoimmune disease to Boston Children’s Hospital for treatment. They are not up on the latest research and don’t know how to treat these diseases. We need to rip PANDAS, OCD, Autism, Bipolar, and Schizophrenia from the psychiatric journals and put them in the medical books where they belong. Our sick kids deserve to be given proper medical treatment.

    Marcia Hinds
    Ryan’s mom who now has a master’s and works at Boeing because I treated his autism medically in addition to behaviorally and educationally.

  22. Shirley says:

    Last night on the Presedential debate Gov. Romney boasted about how wonderful Mass. health care system was. Is what they are doing to the Wray family included in this statement? The lawyer should go right to the top with this. God bless this family.

  23. Grace says:

    What I am curious about is why the hospital staff would “actively encouraged children’s services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit.” I know nothing about this syndrome… this is the first I’ve heard of it. Why would they need a psych unit???

  24. Toss a Virgin in a Volcano says:

    Message sent: I am appalled at the negligence in care and the heavy-handed tactics used at Boston Children’s Hospital in the case of Elizabeth Wray. You people are from the Dark Ages and should be put out of business. The NIH recognizes PANDAS but you don’t? And yet you are making boat loads of money off of this family and so many more. Absolutely disgraceful… and the word is out via the Internet.

    Please reign in your cavalier doctors who only know how to compound the burden of illness.

  25. This has happened often in the UK with a disease called myalgic encephalomyelitis or ME. That’s recognised by the WHO on the basis of the work of distinguished doctors in the UK, but in the 1980s a psychological theory took hold and some doctors now refuse to believe ME exists. What happened to Elizabeth Wray has happened to many children in the UK with ME. See the film Voices from the Shadows.

  26. Meajones says:

    I would whenever possible avoid any Children’s Hospital as they seem to be great places to get your baby / child apprehended. I hope these parents sue for millions and they get a judge / jury willing to make these kidnappers / child abusers / harmful doctors and fake child protectors pay dearly for their horrible deeds.

  27. LizP says:

    Sent to BCH at public.affairs@childrens.harvard.edu

    Dear Boston Children’s Hospital,

    I am sickened and appalled at the lack of compassion and appropriate care offered to the families who arrive at your doorstep; in the case of the Wray family, after driving hours to seek care for their daughter. Many, MANY families are struggling with issues like those with which Elizabeth presents. Were you to take my children off of their gluten-free, dairy-free, soy-free, corn-free diet, you would witness my eldest descend from a lovely, articulate, expressive, involved young woman to a non—verbal, violent, anorexic mess of a person and my middle daughter go from vibrant health with clear skin to become covered in hives and barely able to breathe around Asthma’s inflammation. Hundreds of thousands of families are struggling to recover their children’s health as a result of the vagaries of vaccine injury, polluted air and water, pesticide overload, and more – these children struggle with huge autoimmune challenges, food and environmental allergies and sensitivities, and virus’ they simply are to weak to clear.

    I stand with the many families who will NEVER darken BCH’s door and will share the Wray’s story to assure our friends do not either. The idea that the your hospital and the State has Elizabeth’s best interests at the forefront is laughable. You have taken a child who was maintaining and decimated her health and removed from her life the people whom she loves and needs to help her navigate the world; congratulations for assuring her ruin rather than providing her the care which would help her overcome her health challenges.

    I am saddened and disgusted by the high-handed disregard for simple human compassion dished-out at the hands of BCH,

    LizP

  28. Nancy Tozier says:

    Anyone interested in meeting me at Children’s tomorrow (Saturday) around 11 with protest signs and hopefully TV coverage? This can not go on and could happen to any PANDAS parent. Orderly and within the law of course. High numbers would make a difference. This is malpractice. We don’t do this in America.

  29. Jennifer says:

    The hospital has asked the court to place a gag order on the Wrays and their attorney, and the court has complied. Keep writing, calling and posting everyone!

  30. Barbara says:

    Posting on Facebook sites … Has anyone started a petition?

  31. Michelle O'Neil says:

    This from The Wray’s attorney Beth Mahoney last night: (before the gag order)

    “Let me just sum up by saying that this evening, when Jay Wray wanted me to see his precious daughter Elizabeth, I was escorted by guards from Boston Children’s Hospital.

    I rode down in the elevator with one guard and the charge nurse on the floor, Louise Hitchko, who had dramatically shouted for “Guards!” to come running and swoop me out of there. She really wanted two guards, but they could only come up with one – so she came along, too, just in case of a tussle. As we rode down, I asked her, “so…how many emails and calls did Children’s get today – must of been a lot, huh? ” She never did answer me.

    This morning they threw Elizabeth’s grandfather out…but more on that tomorrow.

    What’s keeping the Wrays going is you – keep up the good work. And if you get a chance check out the facebook page for Boston Children’s Hospital.”

  32. Carolina says:

    As a CPS social worker in a state other than MA, I am wondering what the real story with this case is. A child would not be removed from parental custody without substantial evidence of abuse and neglect. Substantial evidence is more than a set of opinions or diagnoses from a group of physicians, no matter how coercive or influential these physicians might be with CPS. I think there is a lot of information that is not being released to the public in this case, and this e mail from the lawyer of course is only presenting their perspective.
    I hope this child is being well cared for, physically and emotionally and supported, it is always traumatizing for children to be separated from their parents, no matter a court’s decision about custody,!or whether that set of parents is abusive, neglectful, or not either.
    Sending this little girl strength and resilience in such a hard time.

  33. Taximom5 says:

    My suggestion is that “Kathy” and MA PANDAS MOM contact Beth Mahoney and Michelle O’Neill immediately. If your children were diagnosed with PANDAS at either Children’s Hospital or MassGen, that info will give the judge a reason to vacate his previous order, because it will PROVE that this is a diagnosis accepted by mainstream medical doctors.

    Best of luck to the Wray family…

  34. Sorensen says:

    The story is horrifying. I’ve had brushes with family members of one of the team that filed against the parents in this story to remove custody, so I’m not surprised.

    Massachusetts is the seat of pharmaceutical power because of Harvard. The Biederman Scandal is a case in point–http://www.docdiller.com/oped/75-misguided-standards-of-care-boston-globe-op-ed.html

    There are some amazing people in medicine in Mass who have mysteriously held onto tenure but they’re like islands of sanity surrounded by a sea of world class shills. Anything and everything medical that can be tied to “psychiatric cause”– even on the thinnest pretext– and enable doctors to pay their industry pipers by dishing out new, expensive (and eventually recalled) on-patent happy pills will automatically be deemed “psych.”

    Chronic lead poisoning? Forget about it if you catch it after it’s already sunk into bone and tissue and no longer shows up in blood tests. The vast majority of doctors won’t run any more diagnostics because the behaviors associated with lead toxicity are ripe for “OCD/ADD/ODD/schizoaffective,” etc. And any new medical condition which competes with old psychiatric doctrine is in danger of being diagnosed as “psychosomatic.”

    But none of the pill pushers and graft takers believe they’re bad people, so proportionate to the number of patients they misdiagnose, over-drug, injure or even kill to keep the pharmaceutical grants and CME speaking fees rolling in, they develop a kind of rank fanaticism for a certain way of framing science, medical treatment and their status over patients that absolves them.

    The current system feeds this fanaticism, selling a quasi religious concept of of “scientific progress” on the justification of the totalitarian linchpin, otherwise known as the “greater good” philosophy, which conveniently has the idea of shrugging off collateral (medical injury and loss of life) built into it. They’re all saving us from our defective brains, containing the “dangerous elements” of society and a few eggs need to be broken. There are endless tobacco science psych studies framing patient noncompliance as mental illness and an obstruction to exalted “progress.”

    Meanwhile the pharmaceutical lobby is carving away at patient rights to enable forced treatment with whatever blockbuster drug or technology they put into the pipeline.

    If people don’t band together against injustices like this, it’s going to keep getting worse. Doctors even more than patients have been trained to put medicine on a pedestal, but the enemy here is a cult of science, not science itself. I hope the protest on behalf of this family is loud.

  35. Barbara says:

    It appears BCH took down their Facebook page where we were leaving messages.

  36. Barbara says:

    Now the page is back up!

  37. Sarah says:

    great post Sorenson. The court put a gag order on the parents?? pobably so they won’t talk to the media. I officially hate that hospital now

  38. Angelina says:

    I agree with MeaJones. I avoid all Children’s hospitals as they seem to be home to some of the biggest ignoramuses alive. The last place that I would ever seek help, short of a serious accident which left me no choice, would be from anyone in mainstream pediatric medicine. I can see how people could believe that there is more to the story (it is THAT crazy), but sometimes there just isn’t. The other half of the story can sometimes just simply be that a doc is measuring his self worth with a piece of paper and doesn’t want to be told (by someone who doesn’t have that piece of paper) ANYTHING he doesn’t already know.

  39. Anna says:

    Here’s something for CPS-worker Carolina: look at justice4ayn.com and you’ll find a story about a girl who was taken from her parents without a real reason. And if you follow that information, you’ll find lots and lots of stories about children taken from good homes.

    To Elizabeth and her parents: I wish you a lot of strength, endurence and of cause health.

  40. Sandra Lopriore says:

    PANDAS doesn’t exist!!! This makes me really angry. I invite these ignorant doctors to come observe my child when her antibody level is attacking the basal ganglia of her brain!! She will exibit tics, pain, loss of what little speech she has, etc!!

    Not only do they leave us to fend for ourselves but when they see other doctors (many of whom have children or grandchildren on the spectrum) helping our kids they try to stop it!!

    Tell the family to use Lee Silsby’s Enhansa until they can find a doctor that is willing to do a pulsing antibiotic therapy.

  41. Lilly says:

    We went to BCH for my son who was 5 at the time. He had motor and verbal tics that was absolutely unbelievable. It came on suddenly and was so so bad. Went to BCH they said it could be touretts or chronic tic syndrome. They sent us home to the pediatrician for blood work. The results were sent back to BCH and they called us and said it was Pandas told our pediatrician to perscribe ABX based on high titers due post strep. It helped but it was only 10 days worth and not that strong. We did not know much about it. They gave us a quick synopsis of PANDAS, which I never heard of until they diagnosed him with this via telephone. Then said to look it up online for more information. The neurologist was arrogant, I could say more but too long. We wasted our time with him not sure why but had many conversations as to why he will no longer treat with ABX. he said only with a pos. strep result; which hardly ever happens. I believe my son to be triggered by viruses as well. He also went on to say how other physicians who are treating these PANDAS kids are only out to make money. This was after I rattled off a couple of physicians who will treat them. He also said that Swedo came up to meet with BCH and said she didn’t know what she was talking about. Nice guy huh all the while he said he used to treat kids with ABX but not now. I said why he said cuz they will continue to get sick again and again. Interesting theory huh. He soon left to a different hospital. He suggested another neurologist who would be a good fit. What a waste of time. She was from Children’s also. She said she is not familiar with it and she couldn’t help with any of that but will help with treating ADD. It angers me so much. My son doesn’t tic nearly as much but most recently is obsessed with getting sick. The priciple called and wanted me to remove him from school this week as he was spitting and upset cuz he was afraid of getting menengitis; it has been in the news. the same thing happened when the mosqutios were in the news. I think our next step maybe a doctor in CT. BHC also sent letters to our pediatrician to not perscribe ABX unless there is a pos. test. She is no longer helpful to us at all. So my son is SUFFERING because of BCH. Don’t you love their new commercial “How every child is well”. What a joke. So what is the reason they are doing this could it be they don’t want to lose all these neurology patients and med takers as they can be helped by ABX and or immunologist. Or they just cannot figure out how to treat a PANDAS patient and thus it’s easier to say in does not exsist and treat with psych drugs.

    More recently we needed something in writing from BCH to give the school to get my son a 504 plan. They said they couldn’t write diagnosed with PANDAS as they are not allowed to. They did give me something with the name PANDAS on it. They said one of the reasons was because the insurance carriers would not cover it. Although that did not apply for my letter. Yet interesting just the same. I’m so sorry I wasted my time with them. My son is still suffering.

  42. Mary Sherman says:

    To those who think there “must be more to the story”. I know this family personally.They aren’t people who have extreme ideas about medical care.They are the loving parents of two beautiful daughters.They were looking for the best care for their daughter.She had a valid diagnosis from 2 New York doctors.Instead, they have lost the right to be involved in the medical decisions for their daughter.Who in the world would know Elizabeth better than her parents.These are people who are very family oriented.
    BCH is way off the mark on this.I think they believe the parents, being from “small town”New York couldn’t possibly know the care their daughter needs!

  43. Tiffani says:

    I want to clear up some confusion. I was in court with the family and their Attorney Beth Maloney. I do not have a gag order YET. The reason they lost temporary custody— Elizabeth got a court appointed attorney by the name of Meridith Aherne. She told the Judge she could not support the case being dismissed as she only got the case an hour ago and had not had time to confer with her client (ELizabeth). Judges hands were tied. He spoke sternly to BCH hospital and followed Beth Maloney’s lead. Told them they may not lock her up in “Beta 5″ the lockdown Psych ward.

  44. CJ says:

    I hope in the end the parents sue BCH for all they’re worth and make it public. What a disgusting hospital.