Tomorrow in Boston

Discussion in 'General Discussion' started by n3uromanc3r, Oct 10, 2012.

  1. n3uromanc3r Member

    A friend of mine out here in San Francisco just sent me a blog post about teenager with a rare autoimmune disease being held against her parents' will at Boston Children's Hospital.

    It seems that one of the medications the hospital gave her made her symptoms worsen, and then they pumped her full of sedatives and antipsychotics to the point that she couldn't recognize the food she was eating. The parents started planning to move her elsewhere, and that's when BCS encouraged Child Protective Services to file for custody unless the parents agreed to have their kid put in a locked ward, which they didn't agree to, of course. CPS won custody. The parents were using social media to bring attention to the issue, and hospital filed for and won a gag order. The only mainstream media to pick up on this so far, apparently, isn't even in the US. It was an Italian newspaper.

    There's a protest being held in front of BCS for the family on Thursday. If any of you have the time and are so inclined, I'm sure the family could use the support. If you can't do that, even just spreading this story that's not being ignored but actually actively suppressed would be a big help.

    Thanks guys, sorry for the spammish nature of the message, but it's an issue that strikes me as fucked up on several levels.
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  2. anonymous612 Member

    Gonna need a more trustworthy source than one unverified blogpost, OP.
    • Agree Agree x 3
  3. n3uromanc3r Member

    When one side won't talk, and it making it so the other side can't, we find ourselves in the unfortunate situation where we have to take what we can get. If I can find the original Italian article, I'll post it.
  4. anonymous612 Member

    Yeah, but I remember you. You have a moonbat posting history. Your reputation precedes you. So I'm far less willing to accept low or no dox from you than from someone else.
    • Agree Agree x 1
  5. n3uromanc3r Member

    It's unfortunate that you perceive me as a moonbat, for both of us, and I sense a little hostility. Instead of just calling me that, which will affect how other readers view the information I've passed along, I'd welcome you to point to a thread or post of mine that you consider particularly moonbattish, and I'll address it, explain why I thought/wrote what I did at the time.

    Of course, you should always do your own research to decide what's valid and what isn't.

    If you are interested in this topic and happen to find an article you deem to be more doxy, please pass it along.

    For those in Boston interested in partaking in the protest, here's the FB event link:

    Here's a petition from, although I will note that the article they cite is the very one I posted, so it's not going to really bring a new perspective to the issue.
  6. Anonymous Member

    They need a lawyer, not a demonstration.
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    • Agree Agree x 1
  7. n3uromanc3r Member

  8. moarxenu Member

    This is legit. Read the article. I know the author, and she knows what she is talking about. It has gotten >12,250 page views in 48 hours.

    This is a big scandal. Basically, Elizabeth Wray is being held against her will and that of her parents simply because doctors at Boston Children's Hospital do not believe that her psychiatric symptoms have non-psychiatric origins.

    Conditions such as these are known as PANS (Pediatric Autoimmune Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep).

    For example, you can get OCD for psychiatric reasons or because strep infection in childhood has triggered an autoimmune reaction that attack the basal ganglia and cause the OCD.

    This is not pseudo-medicine. The National Institutes of Mental Health have done numerous studies validating the non-psychogenic etiology of many psychiatric syndromes.

    This is the fifth case where BCH has seized custody of adolescent patients from their parents because they do not believe in PANS/PANDAS. This is a severe abuse of parental rights.

    All the parents want is for her to be released so she can be treated properly three blocks away at Massachusetts General where there are physicians familiar with treating PANS/PANDAS and where they are in process of setting up a special PANS/PANDAS clinic.

    I have relatives with PANDAS kids, and they go through hell trying to find physicians who understand and who face regular abuse from ignorant and arrogant docs.

    There are protests Thursday, Friday, and Saturday in Boston at BCH. 8:00 am to 3:00 pm. For details see Free Elizabeth Wray on Facebook.

    As someone who has seen a great deal of suffering among my relatives I would appreciate people spreading the article and the FB link through your social media and other networks.


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  9. n3uromanc3r Member

    It seems that their lawyer, who is a PANDAS (the autoimmune disease) advocate, has also been silenced by the gag order.
  10. moarxenu Member

    The Italian article is notable in that it was the first media reporting on the Elizabeth Wray scandal anywhere in the world. No one in the US has reported on it yet. However, the Boston Globe is working on the story and other local Boston media as well in light of the protests scheduled for the next three days.

    The article was written by a journalist who has a nephew or niece with PANDAS. The subject of the article is that five Senators in the Italian Senate have requested the American ambassador to intervene in support of Elizabeth Wray and her family.
  11. Anonymous Member

    • Agree Agree x 1
  12. Anonymous Member

    So moarxenu, what is the treatment for PANDAS?
    • Agree Agree x 1
  13. Anonymous Member

    • Funny Funny x 3
  14. Anonymous Member

    Something seems strange about this story. For example, the doctors can call protective services to say they are worried about the parents, but they don't have the power to do anything. That is up to protective services who have to do an investigation, and to the judge who reviews their findings and who gets input from the family as well.

    But it is not the judge but the doctors who are being blamed for suppressing the truth about PANDAS.

    I am smelling a publicity stunt. The family's lawyer is also the author of a book about PANDAS, and nothing sells like controversy.

    The New York doctors who told the family their daughter has PANDAS aren't named, but I bet they are DAN doctors. DAN is kind of a cult.
    • Agree Agree x 1
  15. Anonymous Member

    Well now that we have moarxenu confirming this, I saw we get involved. What this needs is media attention, and some lulz about how this hospital hates 2nd opinions. This is a clear violation of parental rights.
    Children's hospitals are usually the best... this one is a disgrace! They need egg on their face and anon is great at doing that in a way no one else can.
  16. If the news media can work in a comment about flu shots sometimes causing PANDAS that would be great.
  17. Anonymous Member

  18. n3uromanc3r Member

    I have a slight suspicion that the doctors being blamed rather than the judges may be part of something more insidious than a mere publicity stunt. But I will not comment further until I have more information.

    Even if you think this is a publicity stunt, it should be upsetting that the parents had their kid taken away over their wanting her to be treated for what she's been diagnosed with but which the hospital won't admit exists despite the research of the NIMH. And it should be upsetting that this kid has been pumped so full of antipsychotics and sedatives that she can't recognize her food. But what should really get you, if nothing else, is the gag order.
  19. Anonymous Member

  20. n3uromanc3r Member

    That is what it said in the blog I linked to in the OP.
  21. Anonymous Member

    Child protective services takes custody when the parents are acting strangely for some reason. They don't take custody because parents want to get a second opinion. Or if they do, I would expect the judge to say, "Well how about we get a second opinion."

    Maybe the Wrays are caught in the middle between their doctor in upstate NY and the Boston doctors, and that is freaking them out. They probably don't know who to trust.

    Maybe the doctor in NY is a DAN doctor like Dr. Wooten. Is there some way we can find out?
  22. Anonymous Member

  23. anonymous612 Member

    No criticism of MX's personal acquaintance intended, but I still don't see trustworthy dox. We have a blogpost and one article we can barely read and don't know the quality or bias of the source on.

    Just saying. Jumping in headfirst without finding out accurate details is foolhardy.
  24. n3uromanc3r Member

  25. moarxenu Member

    Where strep infection is the major cause the treatment is prolonged antibiotic therapy and may include IV/Ig - intravenous drip of Immunoglobulin. Strep can lurk hidden in tonsils and adenoids and so these are often removed.

    Here is Harvard psychiatrist Dr. Michael Jenike of the International OCD Foundation. He is at Massachusetts General, three blocks away from Boston's Children. He would be treating Elizabeth Wray and is doing his best to get her released from BCH:

    • Disagree Disagree x 1
  26. moarxenu Member

    Point well taken. What is going on here is a paradigm shift in the understanding and treatment of these diseases and follows the usual dynamics of ideological change.

    The Old Guard refuses to accept new data and damn the Young Turks challenging the Orthodoxy. Doctors (very big) egos get involved and political infighting in medical academies and institutions.

    The kids and parents are collateral damage in an ideological war among doctors and researchers.

    The PANDAS parents are barely organized since they spend most of their time tearing their hair out trying to get effective treatment while dealing with arrogant doctors and the rest of the time going to appointments and staying up late at night doing internet research and networking.

    There is a lot of information but it is hidden away in medical journals and in the experiences that parents report on PANS/PANDAS forums.

    More of it is going to reach the mainstream as media cover the Elizabeth Wray story.

  27. moarxenu Member

    This is no publicity stunt, believe me. Beth Maloney, the lawyer, is not trying to sell her book, which is excellent btw. She is trying to stop what is simply abuse of the enormous power of Harvard and BCH which is destroying not curing Elizabeth Wray.

    In Massachusetts child custody cases are heard by the Probate Court. They hate dealing with these PANDAS cases and simply delay having to do anything about them as long as they can.

    I have no idea who or what DAN is.
  28. moarxenu Member

    I don't think this is an appropriate project for Anonymous and certainly not Chanology. We have a clear focus on the cult.

    However, anons can help out by publicizing the issue through contacts we have and by liking, tweeting, etc.

    PANDAS parents are mid-30s to mid-40s and are not very internetz or protesting savvy. There is a lot they can learn from what we have learned in Chanology.
  29. moarxenu Member

    Just received this Media Advisory from a PANDAS activist:

    October 11, 2012 CONTACT: Lynn Johnson
    PANDAS Resource Network


    Rally to Support Family who lost Parental Rights over
    Sick Child to Boston Children’s Hospital
    Oct. 11 – 13, Blackfan Circle and Longwood Ave. Boston
    Supporters working to return Elizabeth Wray to the care of her parents are holding a 3 day demonstration at Boston Children's Hospital to protest a lack of proper treatment for Wray's autoimmune disease Pediatric Autoimmune Neuropsychiatric Disorders (PANS). Boston Children's Hospital blocked Elizabeth's parents from seeking treatment at a different facility by having their custody taken away and placed with the Commonwealth of Massachusetts. They and their lawyer are currently under a gag order at BCH's request.
    What: A rally to return Elizabeth Wray to her parents for proper care and ask that Boston Children's Hospital recognize PANS for the legitimate medical condition that it is, and stop treating it is a psychiatric disorder.

    When: Oct. 11, 12, 13 2012, 8am-3pm

    Where: Blackfan Circle and Longwood Avenue across from Boston Children's Hospital

    Elizabeth Wray Story:

    The PANDAS Resource Network represents 4,000 families affected by this little known disorder.

    Lynn M. Johnson
    Executive Director
    PANDAS Resource Network
  30. Anonymous Member

    Moar xenu I respectfully disagree with you, If as seems to be the case BCH gagged the Wrays and their lawyer to stem the flow of negative postings to their Facebook wall, then it really does sound to be up Anonymous' alley.

    Where I do agree with you is that the fight for justice for Elizabeth Wray and her poor family is probably something that needs the the more palatable face of concerned parents and medicos rather than the controversy heavy footprint of Anonymous.

    The best thing we could do it seems, is to keep up the flow of condemnation on the BCH Facebook wall.

    I hope the Wrays succeed in having their daughter rescued from this so called Children's hospital. I wish Elizabeth the best recovery achievable and soon.
  31. moarxenu Member

    This is not a straightforward suppression of free speech. There are many medical and legal complexities and it is not yet clear why the gag order was filed. It was not filed to stem the flow of negative feelings on their FB page.

    Wisely, they have only required that Elizabeth's and her family's name not be mentioned. Had they forbidden any postings to their FB that would have been major suppression of free speech.

    Basically, someone(s) screwed up and the administration needs to find a way to get out of this mess and find a way to save face.

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  32. Anonymous Member

    Why should we believe you?
  33. Anonymous Member

    Have they tried getting CCHR to help?
    • Funny Funny x 1
  34. Anonymous Member

    Arrogant doctors are trained to accept published evidence in medical journals. They are also trained to be very wary of brute force like a political rally as a replacement for evidence. So a rally is likely to escalate whatever mess is going on right now in Boston without actually convincing doctors that Elizabeth Wray has PANDAS.

    I doubt the fight is over whether PANDAS exists or not. PANDAS is not terribly new. It is a variant of Sydenham's chorea or Saint Vitus' Dance, which presents with jerky movements and confusion. In PANDAS there is a change in mental state with OCD symptoms and some tics, but no large jerky movements. Antibiotics seems a reasonable thing to try, but I'm not clear on length of treatment. I tried PubMed but found only a few case reports.

    Maybe the fight is over moving Elizabeth to the psychiatric unit. I've never seen the psych unit at Boston Childrens but I doubt it is a scary, horrible, snake pit. It would have a locked door at the entrance with a buzzer and intercom so the receptionist can limit who comes and goes. Patients who are confused and agitated and likely to wander need to be behind a locked door for their safety until they get better. It's hard to manage psychotic people on the general medical floors.

    DAN stands for "Defeat Autism Now." They are popular with the CCHR because they re-define autism as injury from vaccines, toxins, and autoimmune conditions like PANDAS. Autism is a broad category that includes people with infections and injuries early in life causing some brain changes, so there is some truth in what they say. But they use politics, like protests and message boards, rather than science, to forward their ideas. Bullying is disruptive to the process of resolving scientific disputes and really should be avoided. Nobody benefits, except for people with disruptive agendas. Parents get suckered into serving someone else's needs unwittingly. That for me is tragic.
    • Agree Agree x 3
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  35. anonymous612 Member

    I would strongly disagree that this is a free speech issue. If any censorship exists, it is SECONDARY to the primary issues in the situation. This is a patient/parent's rights case. Certainly not Chanology's purview, but really, not the purview of Anonymous in general. End boss of the internet, remember? Not of hospitals or the media.

    Now, it's clearly a fucked up kind of case one way or another. So it would be very reasonable and appropriate for Anons to get involved, as INDIVIDUALS, on their own time. The info for the rally is above. We aren't just chanologists 24/7, we might protest other shit in our nonAnon life. This would be a perfectly reasonable target for interested parties in that regard.

    But I do not think it is at all appropriate for it to be an "Official" cause of this site. Nor do I think it requires a situation room, initiative, or WWP-based organization. Your mileage may vary, but we've diluted ourselves enough already with the Wikileaks/Occupy/whatever-the-fuck crap. TL;DR -- We can't keep adding on every fucking movement we come across, to the detriment of our original causes.
    • Agree Agree x 5
  36. Anonymous Member

    When fights occur in medicine, it's usually because someone says, "Dox or STFU," and the other guy doesn't have any dox. Then the other guy raises a personal army of mommy warriors , writes a book, goes on Oprah, shakes his head and tells the camera, "this is a paradigm shift."

    Once in a blue moon, the other guy skips the mommy warrior stage and goes directly to writing up his findings and getting grants to funds a study with controls, which is doin it rite.
    • Agree Agree x 2
  37. Anonymous Member

    They don't need Guy Fawkes masks, they need a better lawyer. The "Gag Order" shouldn't stop legal action, it stops bombast.
    Doing it right
    NOTE: No action in the street required, just an adequate attorney. If she is wandering and confused she can stay in restraints or go to a locked unit. I would chose a locked unit for my child.
  38. Anonymous Member

  39. Anonymous Member

  40. Anonymous Member

    If the doctors at Boston Childrens Hospital have reviewed Elizabeth Wray's history, examined her, and reached the conclusion that she does not have PANDAS, is it right to pressure them into saying that she actually does have PANDAS?

    Maybe the doctors are wrong. That happens. But the correct response is to show that they are wrong using evidence.

    An America that replaces rules of evidence with politics is a ship with no rudder.

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