Tomorrow in Boston

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

  1. Anonymous Member

    Good medicine doesn't happen in the street. Taking medicine to the street sounds rlly sexy n shit, but it will not help that poor sick girl.
  2. Anonymous Member

    This is not the first case of Doctors having a stick up their butts about parents wanting a 2nd opinion from another hospital.

    I've seen parents who absolutely refuse to treat their kids for whatever reason, and that is allowed because parents have that right. SO this... is just stupid.
    The parents WANT to get their child treatment they just disagree with the ONE hospital on what the treatment should be. I see no problem with the parents taking THEIR kids to another accredited hospital to seek treatment.
    Unless the Doctors at the first hospital have something to hide...
  3. Anonymous Member

    But the protective services person had to talk to the parents and make a decision whether to go to court or not.
  4. Anonymous Member

    Does that necessarily mean that the treatment was not in her long-term best interest?

    Just because a medication has side-effects, doesn't make it bad treatment for the underlying condition.

    would need to know more about this particular case, and a lot more background on this PANDAS thing, in order to form an opinion.

    hmm. seems like it could be a NYPA-type situation.

    You are joking, I hope?

    Right. If the parents think the court's decision is wrong then they have legal channels of appeal, one assumes?
  5. Anonymous Member

    I'm seeing PANDAS academic papers such as this one: with Streptococcal Infections&f=false

    (National Institute of Mental Health)

    which seem decidedly non-moonbat.

    Is that really all they want? For her to be transferred to a different hospital? Surely if that were all they were after then the court would have granted that request?

    Or is the case being used as some kind of a political weapon in a debate which I don't have the PANDAS-controversy background to fully understand?
  6. moarxenu Member

    This is exactly the case. The docs at BCH deny that PANDAS exists and those at MGH do not. In fact, MGH is in the process of establishing a special unit to treat PANDAS. Oddly, both of them are run in cooperation with Harvard.

    One of the dynamics that frequently appears is "not invented here".

    Institutions deny the validity of PANDAS because the outsized egos of docs will not accept that validity of anything they did not discover or invent a treatment for.

    One thing I fear may happen is that CCHR will seek to exploit Elizabeth Wray's situation for its usual anti-psychiatry hate purposes.
    • Like Like x 2
  7. Anonymous Member

    So why don't the parents' lawyers get a PANDA-believing doctor on the witness stand?

    Or have they already done that?

    I can has court dox?
  8. Anonymous Member

    moarxenu, are you sure the doctors are against PANDAS generally rather than just against the diagnosis of PANDAS for Elizabeth Wray?

    Here is some info on PANDAS from NIMH:

    Do you know if Elizabeth Wray's course of illness fits this pattern? If she got sick recently she can't have PANDAS by the criteria above because she is too old.
    • Agree Agree x 1
  9. Anonymous Member

    • Like Like x 1
  10. Anonymous Member

    Why can't the parents get a second opinion from whatever doctor they do like?

    I'm confused.
  11. Anonymous Member

    Belief based medicine is sectarian medicine, sometimes called cult medicine. What we want is reality based medicine. And since presumably we are all interacting with the same reality, there should be no sects or schools of thought.

    Where we don't have a good understanding of the facts doctors will have divergent opinions. But when that is the case, patients are offered a choice. Doctors have nothing to gain and a lot to loose by going to court over matters of opinion (see "Daubert standard").

    If Elizabeth Wray is psychotic due to PANDAS or due to some other condition, the doctors will want to put her on the psychiatric unit where she can be safe. They also will want to use antipsychotic medication. Antibiotics may help prevent flair ups of her symptoms, but they won't treat acute psychosis. There is evidence in the story that the family are opposed to psychiatric meds and moving Elizabeth to the psychiatric unit. So maybe this is the real disagreement between the doctors and the family and the question about the diagnosis is secondary.

    If the family want a second opinion from another doctor in Boston and Elizabeth is too confused to cooperate with a trip to his office, that other doctor can see her at Boston Children's Hospital as a consultant. Or if he doesn't have privileges there, he just needs to talk to the patient's treating doctor to get permission to visit.
  12. moarxenu Member

    They can't get Elizabeth out of the hands of BCH to get a second opinion because she is now a ward of the state of Massachusetts as a result of BCH going to Child Protective Services. The Wrays have no say whatsoever in her treatment at the moment. They have lost custody.
  13. Anonymous Member

    There is a public relations trick that I don't like but I have been seeing more frequently:
    1. Limit access to the full story.
    2. Punch hard with emotional imagery that grabs widespread attention.
    3. Let the critics shred the story once the buzz is gone.

    The antidote to bad speech may be more speech, but only if that more speech is presented in a timely fashion, due to human neurobiology.

    The recent anti-GMO study with the rats covered in tumors is an example of this strategy. Journalists were only given a copy of the scientific paper after agreeing not to talk to experts about the study until it had been published. So they wrote articles without the full benefit of informed criticism. Once that criticism came in, it was an avalanche. But the public mostly missed it.

    This Elizabeth Wray story has that same quality: an incomplete account of the facts combined with an urgent, emotional appeal to create a media frenzy right now.
  14. Anonymous Member

    But this will be a temporary state of affairs. Every effort should be made to include the parents in treatment decisions even if they are somehow not at their best right now. Only their own behavior could frustrate this effort.

    Believe me, the doctors, the hospital, and the State of Massachusetts will have no interest in adopting a 16 year old from New York. I think everyone who has worked in a hospital will understand this.
  15. anonymous612 Member

    This is still far too light information to actually decide to act upon.

    And I don't like the strong anti-Big Med/Big Pharma/Big Psych vibe I'm getting here. It reminds me of the anti-vax nuts. Or of course, CCHR.

    We shouldn't get involved. Not under the Anonymous flag and name, not at this time, and imo not at all.
    • Agree Agree x 3
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  16. Anonymous Member

  17. moarxenu Member

    This is not a court case so there is no witness stand.

    There are only two dox related to the affair as far as I can tell:

    1. Probate Court custody order granting custody of Elizabeth to Child Protective Services. This is probably not publicy available due to HIPPA confidentiality requirements.

    2. Probate Court gag order on Elizabeth's parents, Carrie and Jay Wray, and the lawyer who represented them, Beth Maloney.

    The request to have Elizabeth removed from the custody of her parents would have originated in a request by a BCH doctor to Child Protective Services, who would have then made application to the probate court.

    This would have to have been backed up with the requesting physicians reasons for making the request and information from Elizabeth's patient records, which is why it would not be publicly available.

    The gag order, however, should be available, but I don't know what the case number is or how we would go about finding it.
  18. anonymous612 Member

    Oh yes, because an internet connection and WebMD really makes some random bint on facebook know more about medicine than someone with a decade's worth of education and degrees in the subject.
  19. anonymous612 Member

    For the record:

  20. Anonymous Member

    The Harvard psychiatry department rotates the same resident doctors through all their affiliated hospitals, including MGH and Boston Childrens. So why would the doctors at one hospital fight with doctors at another hospital, when many of the same doctors work in both hospitals?
  21. Anonymous Member


    This "Free Elizabeth from BC so she can go to MGH" shitstorm is fucked up somehow.
    • Agree Agree x 1
  22. Anonymous Member

    Presumably the parents get to make representations to the probate court? Do they? and if so then why didn't they say "all we want here is a second opinion"? - if indeed that is all that they want.

    I share the feeling that we're not getting the full story here.

    Would I be right in thinking that the parents are insisting she MUST have PANDAS just because they think that's what she has?

    If the parents aren't acting in the best medical interests of the child - in order to make some political point or other about PANDAS or vaccination or something - then it's right that the state should overrule their decision. Side-effects of drugs presecribed by the current hospital notwithstanding.

    Can we do a counter-protest in favour of the doctors?
  23. moarxenu Member

    No. Re-read the Margaret Gordon article. She was already disgnosed and being treated for PANDAS in her hometown in upstate NY.

  24. Anonymous Member

    Gluten free casein free diet is DAN!/Mercola woo. It is not recommended by reputable doctors for behavioral problems. Plus it is mean to deprive children of delicious pizza for no good reason.

    A gluten free diet *is* recommended to people with celiac disease, which is pretty rare and can sometimes be hard to diagnose. A casein free diet might be recommended to people with milk protein allergies, also rare and not likely to be the cause of mental illness.

    The quacks take a grain of truth --like some people having problems with gluten and casein-- and they run way out of bounds with it.

    When the referring doctor is doing something kooky, that does call into question the primary diagnosis that doctor suggests. The hospital doctors will have to review everything from scratch themselves. This will take time. Meanwhile, moving a psychotic child to the psychiatric unit seems a reasonable plan. Friends of the family should help the parents to see the reason in this rather than escalate some needless conflict.

    Psychiatry verses PANDAS is not a real fight. Psychiatrists see lots of people with acquired brain disease due to infections, autoimmune diseases, toxin exposures, and accidents.
  25. Anonymous Member

    They've tried PANDAS treatment for eight months and Elizabeth is worse. So the family is fighting to stay the course?

    The patients of cult doctors become like Freddy Quell. They take great offense at perceived contradiction or criticism of their masters.
  26. Anonymous Member


    Beth Maloney, lawyer for the Wray family.
  27. Anonymous Member

  28. Anonymous Member


    OK I see a problem with Ms. Maloney's objectives. There is no practical way to eliminate a cause when that cause cannot be differentiated from background noise.

    From the NIMH site:
    So according to Ms. Maloney, doctors should not treat OCD due to PANDAS until PANDAS has been ruled out. However, there is no possible way to rule out a strep infection in the child's history as a root cause of the OCD. This is an impossible bind that can never be resolved.
  29. Anonymous Member

  30. Anonymous Member

    I am not sure this person understands what "arrogance" actually means.
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  31. anonymous612 Member

    So I asked via the facebook page for the case number, so we can look up the gag order for ourselves and look into offering assistance. That was...frustrating. I was accused of calling them liars, trying to get personal information about a child, etc etc. I explained repeatedly what I was asking for and why, and repeatedly said that I was not doubting their honesty, merely wanting to see the document for myself so I can figure out wtf is going on with such a complicated case.

    So of course they responded by just deleting the entire thread.

    While still accusing people of censoring them in the media and courts.


    EDIT: So because I'm a glutton for punishment, I tried again.

    Apparently the "tenor of my comments leaves a bad taste." And why would I want to see the gag order, isn't their vague word good enough? And aren't all court documents confidential anyway? AND WHY DO YOU THINK WE'RE LYING OMG.

    Seriously, I'm firmly in the "screw these guys, let them sort out their own problems" category now. I don't like their response to outside help at all. Reminds me of Occupy Wall Street, and their "Yes, you've done all this a thousand times before, but clearly WE'RE RIGHT AND YOU'RE WRONG GO AWAY YOU'RE A GOVERNMENT PLANT."
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  32. Anonymous Member


    I just stumbled on an example on Beth Maloney's blog of this thing I've been seeing recently:

    Maybe business people do this. But in science you can't control the debate like this.

    If you are trying to publish a shit paper in a scientific journal and you don't want anyone to point out why it sucks before it goes to print, too fucking bad. Go back to your lab and write a better paper.
    • Agree Agree x 1
  33. anonymous612 Member

    From pretty much the only person behaving rationally:
    Moarxenu, I think this is the best we're going to get:
  34. anon walker Moderator

    Depends on the decade they were in med school. Times have changed, geezers haven't.
  35. Hi. I am the creator of the FB page in question and I am happy to answer what I can. I am not family or a lawyer, I have 2 kids with pandas and disabled and I am not a genius . We can use all the help we can get. What can I do to assist any efforts here? I know alot but there are certainly things I don't have. Please advise thanks
    • Winner Winner x 1
  36. anonymous612 Member

    If your doctors are all old geezers you're going to the wrong doctors.

    Bostonadvocate: I'll let wiser voices chime in with the bulk of it, but for starters...your situation stands a chance of attracting sleazy groups who want to leech on. If you hear from a group called CCHR -- run. Just run. They're a frontgroup for Scientology who think psychiatrists are secretly planning on murdering us all. I'm not exaggerating.
    • Like Like x 1
  37. What does CCHR standfor? I am a main stream medicine type of person. scientology can kiss my ass
  38. n3uromanc3r Member

    I agree that it's foolhardy and more than a little arrogant to assume that because you have an internet connection and WebMD you're suddenly qualified to position yourself as some kind of expert. That's a good way to come up with a misdiagnosis, and has to be really frustrating to the doctors.

    I'd rather call the deletion of your post "hypocritical" than "ironic." It's more to the point.

    On an unrelated note, I'm still curious as to what makes you think I'm moonbatty.
  39. anonymous612 Member

    Citizen's Commission on Human Rights. Scientology hates psychiatry because psychiatry says Scientology is a cult. Which it is, of course.

    N3uromanc3r: How about how you post things without dox?
  40. The issue with doctors and PANDAS is this
    1. mental health issues can be caused by bacteria etc.....this goes against the push for big pharma drugs and ways of thinking, but syphilus is an example of proving that yes bacteria can be a cause of mental illness. This goes against everything theu have been taught

    2. PANDAS was discovered in the late 90's so relatively new so there are not a lot of studies and hard proven facts such as how to diagnose. there is no blood test etc. But because there are not enough studies,my kids shouldnt suffer and docs dont like to step outside the box.

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