Boston Children's Hospital Take Special Needs Child from Parents

Discussion in 'Anonymous News' started by Andy Downs, Feb 26, 2014.

  1. Andy Downs Member

    As a parent of a special needs child this really pisses me off.

    Parents take their child to Boston Children's and because they disagreed with the ER doctor, the doctor called child services


    Article at

    Boston Children's PR Response Twitter:

    Their touching Facebook post

    My response is HORSESHIT
  2. The Internet Member

    Your source is Ben Swann. He thinks vaccines cause autism.

    There’s chiro friendly and chiro not friendly MDs. The chiro friendly ones say vaccines cause all kinds of problems. They also are big on supplements and “holistic” stuff. And they tend to give diagnoses that aren’t well established, like chronic Lyme disease.

    So there is a cold war going on out there between doctors who are more “dox or GTFO” and ones that are, um, more loose with the evidence. This war is bad for us when we’re sick and we get stuck in the middle. I think that might be what happened to this poor family.

    I wish the science oriented doctors would spank the ones who talk out of their ass, so we can figure out which doctors are being careful and which are selling Herbalife long before we get sick.
    • Like Like x 4
  3. Andy Downs Member

    That's a fair point.
    Better source: (maybe)

    I used to be a Foster dad. I saw so many things wrong in the system it made me sick...and not very popular with Dept of Children Services.
    Once you get into the "System" it is very hard to get out.
    • Like Like x 1
  4. Disambiguation Global Moderator

  5. Disambiguation Global Moderator

    • Like Like x 1
  6. The Internet Member

    So the family could have had their daughter closer to home, but scared off the potential placement by threatening to sue? That is not a good look for that father.

    Protip:Foster parents and people running group homes don’t want protests outside their door. So if you want to get your kid moved from a facility to a community home, do not go all apeshit legal on the people who might otherwise take your kid.
    • Like Like x 4
  7. Disambiguation Global Moderator

    Agreed. However parents with a sick kid get crazily protective and start viewing anyone who causes their child pain- doctors, nurses blood drawers as an enemy. These poor people. They look for people to help them and take the hands of anyone who says they will help. When they use the situation for their own purposes the family and the kid are further hurt. They have my deepest sympathy.
    • Like Like x 1
  8. The Internet Member

    Where is the CCHR? Surely someone rang them up and got them involved.

    Oh hey, a nurse named Kathleen T. Higgins RN cc’d the CCHR when she wrote a complaint against the doctors at BCH. Screen Shot 2014-02-26 at 11.36.45 PM.png

    I Googled “Kathleen T. Higgins RN” and came across an earlier kerfuffle at BCH where a child was temporarily removed from parental custody due to a dispute over the diagnosis. In this earlier case, Ms. Higgins also wrote complaints. Kind of an interesting coincidence.

    Link to a thread about this other situation: #1

    Protip: If you get mad at a psychiatrist, do not ask the CCHR to help you out. They will use you to play up a media shit storm and you will be sad later, due to being used.
    • Like Like x 5
  9. fishypants Moderator

    This is ringing a whole lot of CCHR/Scientology/anti-psychiatry bells.
    • Like Like x 4
  10. Xi Akaname Member

    While reading that complaint I feel very conflicted about psychiatric practice. I've been hospitalized multiple times and have witnessed forced tranquilization (we called it "Booty Juice", which was a injection stuck in your buttocks that knocked you out). They put you in an isolated room with what is usually a bench or a bed, sometimes people went in there to calm down should they feel overwhelmed or on the verge of snapping and need to be away from people. If you don't comply to their orders to calm down, they'll strap you down with restrains and inject you with the dose.

    My conflict comes from this; on one hand, the patient was acting out. They were putting others or themselves at risk. On the other hand, sometimes(depending on the individual) they were not mentally/emotionally capable of realizing what they were doing is wrong, especially in that kind of environment. Being forced into unconsciousness for experiencing a panic attack or whatever it is that triggers that sort of defensive mechanism in your brain is, in my opinion, fucked up. And honestly? With mental illness, you will never have complete control over your emotions, even more so your thoughts. Sure, it will never completely excuse things like assault and what have you, but it should never have to come to knocking them unconscious. Then again, you can't exactly let them rampage through the unit.

    I was going somewhere with this, I swear, but it sounded a lot better in my head. Still, I just thought I could get my opinion out there.
    Sorry if it's just a bunch of rambling. Like I said, it all makes so much more sense in my head, but then I write it out or say it and it's just a bunch of "What the fuck".
    • Like Like x 4
  11. White Tara Global Moderator

    No not at all wrong to be conflicted on this matter, on one hand peoples rights, on the other illness that affects peoples right mind. Its a hard balance IMHO.
    • Like Like x 2
  12. Xi Akaname Member

  13. White Tara Global Moderator

    well at least that some positive news. :)
  14. rickybobby Member

    According to the Boston Globe and ABC, the story is that this girl, who had been under treatment for a year with a mitochondrial disease specialist at Tufts, was taken to Boston Children's for treatment for the flu. Within three days, Boston Children's had decided she did NOT have a mitochondrial disorder, despite the fact that it is a notoriously difficult condition to diagnose. They then proceeded to strip the parents of their parental rights, and denied the child the ability to be treated by the specialist who had been caring for her for the last year.

    It is also known to mimic somatoform disorder.
    (please forgive the formatting; copied from a pdf)

    According to the Boston Globe, a specialist at Tufts had diagnosed mitochondrial disease and had been treating the child for a year. Subsequently, the child was taken to Children's Hospital, whose team disagreed with the Tufts diagnosis. Rather than investigate further, they decided the best course of action was to strip the parents of their parental rights rather quickly and force their treatment on the child.

    I just hope that, if this child does indeed have a mitochondrial disorder, that no permanent harm has been done by this derailment in treatment. One of these diagnoses is wrong-- therefore, this child has undergone useless and possibly harmful medical treatment by SOMEONE here. I must think that this separation from the parents for over a year must be incredibly traumatic and irrecoverable for a disabled child, regardless.

    The larger issue here is summarized nicely in this article by another parent of a another child treated for mitochondrial disease:

    • Like Like x 3
  15. The Internet Member

    I find that article depressing. The politicians are playing along with the “let my people go!” narrative, which is not going to help the poor doctors or the poor parents trying to do right by this girl. That narrative is also damaging to the relationship we all have with the doctors out there in general. They aren’t “kidnappers."

    There are lots of out of home placement options along a spectrum of cost and supervision. The most expensive and restrictive places are inpatient units. Then there are big residential programs with maybe a hundred patients. Then smaller ones with maybe 6 people. Then ordinary families with some training in working with people with mental problems.

    This kid was in the most restrictive setting, an inpatient unit, for several months. Looks like her doctors tried to move her to various less restrictive settings but the parents didn’t like any of them. Finally she got moved to a residential program, where she is now, and was about to move to a foster home. But the parents objected.

    I hear the parents saying they want their daughter home. Usually there’s a process to that, with day visits then overnight visits, then finally the kid is home. That process goes forward when a kid is in a therapeutic foster home or residential program reasonably close to the parents’ home. Just demanding the kid come home when several doctors feel that would not be wise seems retarded. But what do I know.
    • Like Like x 1
  16. The Internet Member

    I don’t know anything about mitochondrial disease but I will check it out. I do know that we are only getting one side of the story because Boston Childrens Hospital has to respect confidentiality. Also, they probably know about mitochondrial disease due to being Harvard Medical School.
  17. White Tara Global Moderator

    No but medicine is an ever evolving science, sometimes its practitioners lose sight of that fact and then the whole medico legal thing comes into play and everyone suffers.An unwinable war.
  18. Xi Akaname Member

    I know that because of modern medicine I have been able to get a better hold of myself, although like mentioned not a complete hold. I've also been able to experience enjoyment and some content in my life. However, it's a pain to remember a) when to take which dose, b) how much of a dosage is which pill (I take four), and c) just taking it in general. Plus, this medicine is taking about ten years off my life span compared to what it would be if I was running around maniacally unmedicated. Then again, with how I get off my medications (I stopped taking them for a year once. Long story short, almost committed a horrible crime) I'd last until about thirty.

    This kind of reminds me of that one guy who had severe OCD that tried to kill himself by shooting himself in the head, only to hit that certain part of his brain where the disorder was "located", so to speak, and the bullet corrected it and later he went to a five year college (or was it four...I can't remember). It just makes me think; what if there are certain parts of our brain that are, for lack of a better word, "plagued" by said disorder and maybe, just maybe, with some practice (not practice on an actual human being unless they donated themselves to said practice), patience and research, maybe we can find an alternative to more or less "fix" this issue, rather than swallowing plastic capsules that contain chemicals to correct the way our brains think.
  19. rickybobby Member

    But so does Tufts-- and she was already under the care of an expert in said disease at an institution of good repute.
  20. Disambiguation Global Moderator

    Why did she get sent to Boston Chidren's Hospital when she had been at Tufts?
  21. White Tara Global Moderator

    I believe she had. health downturn and the location was just convienience wasn't it?
  22. rickybobby Member

    These parents had a genuine basis for their treatment decisions for their daughter based on expert opinion; a new group of doctors NOT as familiar with their daughter and her case disagrees and wants to start her down an entirely new path of psychiatric meds and confinement without consultation from the aforementioned expert; the parents object stridently and vociferously and get labeled as "difficult," and then their daughter is taken away from them, because they won't cooperate.
    • Like Like x 1
  23. The Internet Member

    Right. So there are conflicting views amongst the doctors. So somebody needs to hear both sides, weigh the evidence, and make a decision. I guess that happened already a couple of different times, first when protective services got called to look into the situation, then again when a judge had to decide what would be in the child’s best interests.

    Seems like a bad idea to me to get the public involved to pressure the doctors or the judge to change their minds, assuming they’re trying to do the right thing. Because the public can’t hear both sides.
    • Like Like x 1
  24. rickybobby Member

    I saw in one article that she was taken there for the flu. Can't find the reference right now, other than that the article didn't add anything new.
    • Like Like x 1
  25. White Tara Global Moderator

    Yes RB it was something innocuous enough that brought them there for treatment then they got caught up in an acedemic pissing contest between great medical minds.
  26. rickybobby Member

    And shouldn't the default position be that it is the PARENT'S who get to do that?

    The state should only intervene if there has been an egregious show of bad judgement or lack of care. It's not up to the state to referee a dispute between treatment plans of two reputable medical institutions and impose one treatment plan over another when there is no clear consensus. Perhaps, at the most, they could force further fact finding until a clear consensus emerged.

    It is apparent that DFCS is not qualified to referee this, and the judge didn't look out for the child's best interest. I don't care if his parents acted like assholes at the hospital. Sometimes even assholes are right. And sometimes good folks are driven to act like assholes. Look at me, for example:)
    • Like Like x 2
  27. Disambiguation Global Moderator
    History of Boston Children's Hospital and parental custody cases. Yikes. They have a history of doing this including pursuing the parents even after they take their child to a different hospital. In addition they have problems with the diagnosis of mitochondrial disease in general.
    These people are the Nazis of Ethics Review
    Self importance is bad even when it's warranted.
  28. The Internet Member

    Gais, the kid is not at BCH. She’s been living in a residential program and was going to move to a foster family situation. But there was a court hearing three days ago where the parents objected.
  29. Disambiguation Global Moderator

    My understanding is that BCH's team started the proceedings against the parents and once the ball was rolling it continued to roll over them.
  30. The Internet Member

    The basic disagreement concerns the diagnosis. One side says the child has a mitochondrial disorder and that side has recommended a lot of medical interventions, like surgery to place a port in the colon so people can flush the colon out periodically and meds like Tegretol, and some other stuff I forget. The other side says the child has somatoform disorder, which is like being a hypochondriac.

    So it’s crucial to pick the right diagnosis and plan here for the health of the child.

    As I understand, the parents object to the removal of medical interventions. My own feeling is, the less medical stuff the better --just in general, for anybody. So if that’s an option for anybody, I’d say maybe go that route for a time and see what happens. Looks like the kid didn’t die like her parents thought when the meds were stopped a few months ago. That’s encouraging at least.

    Oh I found the part I read about the meds:

    "As was common in mitochondrial disease cases, Justina was taking a long list of pills, prescribed by various specialists, including Tegretol for neurological problems, Metoprolol for a rapid heart rate, and Midodrine for boosting blood pressure. In addition, she was taking a vitamin cocktail prescribed by Korson to help with her weakness and fatigue."
  31. Disambiguation Global Moderator

    But why is Boston Childrens grabbing the kids from Tufts? It sounds like Boston Children's disagrees with the diagnosis of mitochondrial disorder made at Tufts. Again and again. I'd love to be a fly on the wall in the department meetings.
  32. The Internet Member

    Put yourself in the shoes of a nurse or doctor who thinks a child is potentially being harmed by over-medicalizing some psychological problem. These cases do come up. There are stories of kids who have had multiple surgeries and invasive tests for ill defined conditions that later were determined to be psychological.

    It is up to you to do what you think is right. But if you go that route, you will probably wind up in court because the parents are litigious and they’ve got political back up, including the CCHR. There’s a good chance your name will be in the newspapers.

    I think in that situation most people would let the parents shop for the doctor who is most medically aggressive, even if that’s bad for the kid. It’s the younger and more idealistic doctors and nurses who will get suckered into Doing The Right Thing. I love those guys, but I know they’ll bend with time. Hope they don’t break though.
    • Like Like x 2
  33. The Internet Member

    She’s not at Tufts or BCH, luv. She’s at a place called, “Wayside."
  34. Disambiguation Global Moderator

    Well said
  35. The Internet Member

    That guy at Tufts, Korson, is probably a fine doctor trying some experimental ideas in an area where there’s not much evidence to go on. He doesn’t sound like a cranky true believer. But he’s probably got no great way to filter out kids with more psychological issues, since he’s decided muscle biopsies and genetic tests aren’t necessary.

    I read that this kid was on laxatives before the surgery, which can make the colon slow. So I wonder how this doctor decided the slowness was not from the laxatives.
  36. Andy Downs Member

  37. Andy Downs Member

    I have a special needs child. I went years around and around with all types of doctors.
    I knew the meds they were prescribing were making things worse. I researched other med options on my own.
    The doctors didn't want to prescribe what I had found.
    First it was a generic. I got a copy of the doctor's protocol list on the drugs that this particular office would prescribe from one of the nurses.
    Not one drug on the list was available in generic. Generic expense wasn't the issue with me, it was the way the drug reps had basically constructed the list
    so the doctors only give out their own drugs.

    I finally got another doctor to try what I wanted, and my son improved ten fold without the side effects he had been living with.

    So I understand the skepticism, I also know that sometimes doctors get into a protocol where they don't see the big picture. Parents of special needs kids can be very forceful and sometimes worse, I have had my moments, but that generally happens when what they have to say is being ignored.
  38. fishypants Moderator

    I'm not sure about that. It should come down to medical evidence (which is pretty much what you say yourself in the following para).

    Certainly there are some situations in which parents make decisions which are not in the best interests of their child, and should be overruled by the courts - for example, if the parents are Jehovah's Witnesses and refuse permission for the child to be given a life-saving blood transfusion.

    Whether this is one of those situations, I don't know - I haven't studied the detail - but I can't see how anyone who only knows about this from media reports is likely to be more familiar with all the details of the case than the judge was.

    The judge has (one would hope) studied the factual details of the case - and if they have failed to do so, or they have made an obviously wildly wrong decision, then that would be grounds for appeal, I would think? It's not like there isn't a process for challenging judicial decisions.

    Certainly I don't have too much sympathy for the idea that courts should never be allowed to take children away from their parents, if the parents don't appear to be acting in the best interests of the child; Victoria Climbie, Daniel Pelka and Baby P spring to mind.

    SpiritCatchesYAYFD.jpg is an interesting case study on this topic. One issue (of many) is that immediate side-effects may be very clearly visible to parents while longer-term positive health effects are hidden (aka "why are they poisoning my baby?!").
  39. fishypants Moderator

  40. Andy Downs Member

    The fallacy of the Child Protection Services system is the low standard to have a child taken away.
    I used to be a foster dad.
    So you are sitting there one day, the police come with a child protection rep. Your kids are now gone.
    What happened to get to that point?
    The Child Protective agent was either informed if a complaint, or was called by someone of "Authority" like a doctor.
    Those agents will question other types of complaints more so than the doctor.
    They will just accept it pull the child, and then there are a series of multiple hearings just to get to the point where you can legally challenge why they took your kids.

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