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  1. #1
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    Family battling Children’s Hospital to bring teen home for Christmas

    http://natmonitor.com/2013/12/21/fam...for-christmas/

    It’s a parent’s worst nightmare: you no longer have custody of your child even though you feel that you’ve done everything right. Unfortunately, that nightmare has become reality for the Pelletiers. Judge Joseph Johnston recently ruled that the state should maintain custody of the couple’s 15-year-old daughter Justina, according to the Boston Globe. While the judge plans to appoint a court investigator to take another look at the case, the Pelletiers were hoping to have their daughter home for the holidays.

    Justina’s case is a complicated one. Boston.com reports that Pelletier has spent most of the last ten months locked in a psychiatric ward at Boston Children’s Hospital.......more at link.....


    "The further we (as the human race) grow away from the natural world, the quieter the natural world becomes and the more pathological we become as a culture."........Bernie Krause

    The citizens of the United States of America have a right to applaud themselves for having given to mankind examples of an enlarged and liberal policy—a policy worthy of imitation......which gives to bigotry no sanction, to persecution no assistance.......George Washington

  2. #2
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  3. #3
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    A little shocking and very confusing!


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    Nosy by Nature and a Websleuther by choice

  4. #4
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    Apparently The Globe did two articles about Justine (recently) prior to the one Donjeta linked to, but I can't seem to find them.

  5. #5
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    There are two articles linked in the one I posted but I can only see a preview without a subscription.

    http://www.bostonglobe.com/metro/201...xZI/story.html

    http://www.bostonglobe.com/metro/201...UgP/story.html

    A video here
    http://www.boston.com/lifestyle/heal...vb6K/blog.html
    Last edited by Donjeta; 12-22-2013 at 12:21 PM.

  6. #6
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    Well, I just finished reading Part One, and it really is a must read if at all possible.

    I think The Boston Globe lets one read maybe 10 articles a month at no cost. If a big box appears, try clicking the Collapse Button in the top right corner of the box to ... collapse it.

  7. #7
    belimom's Avatar
    belimom is offline Our lives begin to end the day we become silent about things that matter ~MLK Jr
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    Quote Originally Posted by i.b.nora View Post
    Well, I just finished reading Part One, and it really is a must read if at all possible.

    I think The Boston Globe lets one read maybe 10 articles a month at no cost. If a big box appears, try clicking the Collapse Button in the top right corner of the box to ... collapse it.
    Reading now. How can they "prohibit" a second opinion? I've worked at hospitals and it has always been true in my experience that (in most cases) a hospital can release a patient into the care of another doctor - that they have to - if the patient/family chooses to change course.

    This makes no sense (bbm):

    They became furious when the Children’s team informed the parents that they would be prohibited from seeking second opinions, including from Korson.

    http://www.bostonglobe.com/metro/201...xZI/story.html

    .

    ETA: I've now read the entire article. This is maddening and absurd. If I learned one thing, it's to be careful what you sign at the hospital before admitting your child (or yourself).
    Fly high and free, Jhessye ~

    My posts are meant to help think through possibilities and are strictly an additional opinion under circumstances when many points of view need to be considered. I apologize in advance to anyone whose potential involvement is contemplated in error. Please understand that much of what is happening is merely brainstorming during unfortunate events.

  8. #8
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    This disease is so rare that I doubt it is widely understood. My question is: Is Justina thriving in the psych ward, off her meds? If so, I think one has the answer. If not, the diagnosis of mito would stand and should be treated accordingly. JMO

  9. #9
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    I think there is plenty of blame or reason, all the way around.

    But, after reading all three Boston Globe articles, this from Part Two is notable to me:

    "In the bitter cold of last Thursday morning, on the final day of the trial to determine Linda and Lou Pelletier’s fitness as parents, Juvenile Judge Johnston prepared to hear testimony from the witness at the center of it all. Justina was wheeled into the fourth-floor courtroom of the Edward Brooke Courthouse in Boston.

    For the first time in this protracted case, the 15-year-old girl appeared in a courtroom to weigh in on her own future. Improbably, her hospitalization had consumed almost an entire year of her life.

    Korson, her doctor from Tufts, was the next scheduled witness.

    A gag order prohibited any of the parties from disclosing what anyone said on the stand. The judge is expected to issue his ruling as early as Friday on whether Justina will be returned to her parents."


    I wonder what Justine said in court?

  10. #10
    belimom's Avatar
    belimom is offline Our lives begin to end the day we become silent about things that matter ~MLK Jr
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    Here is more about the judge appointing someone to review, as Reader mentioned in the original post:

    Judge orders independent look at Justina Pelletier’s medical controversy

    Published: Sunday, December 22, 2013

    WEST HARTFORD — After nearly a year of forced separation from her family, Justina Pelletier, 15, was barred from going home with her family to their West Hartford home for Christmas this year. A postponement in a ruling has ensured the family’s legal battles will continue through the holidays.

    Judge Joseph Johnston, recently postponed his final custody decision until Jan. 10, leaving the teen in the state custody in Massachusetts, but also appointed an independent investigator to take a new look at her case...

    http://www.westhartfordnews.com/arti...f864643272.txt
    Fly high and free, Jhessye ~

    My posts are meant to help think through possibilities and are strictly an additional opinion under circumstances when many points of view need to be considered. I apologize in advance to anyone whose potential involvement is contemplated in error. Please understand that much of what is happening is merely brainstorming during unfortunate events.


  11. #11
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    What a mess. I was just able to read Part 2 after clicking it several times, and also the West Hartford news article. My takeaway from this is that it is all about being right. The human being that is losing the most is Justina. Part 2 stated that Justina did not improve once placed in the psych unit, either due to her medical diagnosis or psych diagnosis or a combination of both. The only person in the articles that made the most sense was Christine Mitchell, the ethics person IMO. This teen wants to go back to her life at her school and that needs to be respected. The parents have made this very difficult IMO by threatening to sue everybody. That gains nothing. I really hope that Justina can go back to her school regardless of where she is housed. IMV that is a very important part of her treatment because that is what SHE wants. JMV

  12. #12
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    From November Daily Mail:
    http://www.dailymail.co.uk/news/arti...uinea-pig.html

    Three years ago Justina was diagnosed with the rare genetic muscle wasting condition Mitochondrial Disease. Her 25-year-old sister Jessica also suffers from it.

    Both girls were treated by specialist Dr Mark Korson, at Tufts Medical Center in Boston, a two-and-a-half-hour drive from their home in West Hartford, Connecticut.

    Justina needed two surgeries to clear a blockage in her intestines and fit a port, so that her colon could be flushed out daily with a saline solution. She was put on a cocktail of drugs and appeared to be responding well.

    Then in February she went down with flu and became dehydrated. Dr Korson was away, and the family took Justina to Boston's Children's Hospital, where she was admitted on February 10.

    Justina was admitted on February 10. The next day, her parents went to visit and were confronted by a neurologist and psychiatrist.

    'They told me that Mitochondrial Disease did not exist,' says Lou, a financial planner. 'Instead, they said she had Somatoform Disorder, which is effectively a stress-related mental problem.

  13. #13
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    According to Boston Globe article Part One:

    First of two parts

    Just after midnight on a Sunday last February, Linda Pelletier climbed into the passenger seat of an ambulance as her ailing teenage daughter lay in the back. They headed for Boston Children’s Hospital, on the advice of one of the girl’s doctors. A crippling storm had dumped 3 feet of snow on parts of New England, and every time the ambulance began to fishtail, Pelletier gasped.

    They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.

    But now Justina’s speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death.

    When the ambulance finally made it to Longwood Avenue and pulled into the driveway of one of the nation’s top pediatric hospitals, the mother thought, “I’m saved.” Her relief wouldn’t last long.

    Growing up as the youngest of four girls in a family full of demonstrative personalities, Justina Pelletier stood out for her quiet demeanor.

    Justina had been sick on and off for several years. A team of respected doctors at Tufts Medical Center in Boston had been treating her for mitochondrial disease, a group of rare genetic disorders that affect how cells produce energy, often causing problems with the gut, brain, muscles and heart.

    Justina had gone to Children’s Hospital this time because the girl’s main specialist at Tufts, Dr. Mark Korson, wanted Justina to be seen by her longtime gastroenterologist, who had recently moved from Tufts to Children’s."

  14. #14
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    So I assume Justina never got seen by the gastroenterologist?

  15. #15
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    Quote Originally Posted by Donjeta View Post
    There are two articles linked in the one I posted but I can only see a preview without a subscription.
    i was incensed when my hometown paper chose to restrict viewing all of a sudden for non-subscribers and i began googling ways around it...

    i use IE, so for me, i go to Tools in the toolbar, then InPrivate Browsing.

    this opens a new window.

    cut and paste the URL (website address) you want to read into the new window and voila! you should now be able to read the desired article from most online papers.

    if you reach a point where you are prohibited from reading another article, just open a new InPrivate window.

    if you use another browser (Chrome, Firefox), just google how to use their InPrivate Browsing as i'm certain the option is available there too.

    hope this helps !!

    *** THIS POST IS JMO (unless a link is provided) AND IS ONLY FOR USE ON WEBSLEUTHS -- PLEASE DO NOT LINK OR COPY IT ELSEWHERE ***

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