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

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http://natmonitor.com/2013/12/21/fa...ns-hospital-to-bring-teen-home-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.....
 
Apparently The Globe did two articles about Justine (recently) prior to the one Donjeta linked to, but I can't seem to find them.
 
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.
 
i.b.nora said:
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.
Click to expand...

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/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html
Click to expand...


.

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). :(
 
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
 
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?
 
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/articles/2013/12/22/news/doc52b6feca542cf864643272.txt
Click to expand...
 
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
 
From November Daily Mail:
http://www.dailymail.co.uk/news/art...lletier-kidnapped-doctors-use-guinea-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.
Click to expand...
 
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."
 
So I assume Justina never got seen by the gastroenterologist?
 
Donjeta said:
There are two articles linked in the one I posted but I can only see a preview without a subscription.
Click to expand...

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 !!

:seeya:
 
I think these people are a little "shifty". Of course I could be wrong.

This document makes it seem like they managed to forestall foreclosure on their home for 4 or 5 years?

http://www.connecticuthouseauctions.com/property/31-birch-hill-drive-west-hartford-ct/8673

And then there was the Chapter 13 filing on May 2, 2013 by Christopher H. McCormick representing Louis G. Pelletier and Linda D. Pelletier. It mentions the house as well as a couple of medical sounding type places.

I don't know if all that is normal or nefarious or somewhere in between.
 
Thank you Reader for bringing yet another fascinating human interst case/story to us here.
 
Zuri said:
Thank you Reader for bringing yet another fascinating human interst case/story to us here.
Click to expand...

YW....Thanks to all of the posters for adding to the case information. I can't wait to see how the judge settles this matter.

It seems to me so far that Justina was doing better under the care of Dr. Korson. I've never heard of a hospital limiting the parents' contact to this degree, unless child abuse was involved, and that doesn't seem indicated (change to proven to me so far).

I'm wondering what Dr. Korson thinks of what has happened to his patient. He tried to set up a conference of all parties involved in the girl's care and this was refused. ?? I also thought this was interesting:

The battle over Justina’s future was one of five cases involving Children’s in the last 18 months where a disputed diagnosis led to parents losing custody or being threatened with that extreme step. These conflicts, which typically involve controversial diagnoses at the medical frontier, have exposed the consequences of the ongoing failure to upgrade medical expertise within the state’s Department of Children and Families. The agency, many observers believe, is simply not equipped to properly referee such cases.
Click to expand...

From Donjeta's link in #2.
 
This is an interesting bit about Ben Bronz Academy, the private school that Justina had been attending until her fateful collapse (I don't know what else to call it) last February. It was posted in 2010.

"Ben Bronz Academy is in Connecticut, and is as much a research lab for educational techniques as it is an an amazing school for bright children with learning disabilities. Ben Bronz uses a combination of Direct Instruction, Precision Teaching, Mediated Learning (Dr. Reuven Feuerstein) approaches. Tuition —hold your breath —is in the range of $35,000 U.S. per year. However, many of the children attending Ben Bronz Academy are children whose Public School Boards are paying their tuition under the Individuals with Disabilities Education Act (IDEA). See how far behind we are here in Canada? For an alternative that is available to all, though, have a look at the Cyberslate online option, offered on the Learning Incentive (Ben Bronz) website as a form of tutoring at a very reasonable cost."

From:

http://www.societyforqualityeducation.org/index.php/blog/oases-of-educational-excellence

I wonder if the School Board or School District for West Hartford was paying the tuition for Justina? Or maybe making a partial contribution?
 
i.b.nora said:
This is an interesting bit about Ben Bronz Academy, the private school that Justina had been attending until her fateful collapse (I don't know what else to call it) last February. It was posted in 2010.

"Ben Bronz Academy is in Connecticut, and is as much a research lab for educational techniques as it is an an amazing school for bright children with learning disabilities. Ben Bronz uses a combination of Direct Instruction, Precision Teaching, Mediated Learning (Dr. Reuven Feuerstein) approaches. Tuition —hold your breath —is in the range of $35,000 U.S. per year. However, many of the children attending Ben Bronz Academy are children whose Public School Boards are paying their tuition under the Individuals with Disabilities Education Act (IDEA). See how far behind we are here in Canada? For an alternative that is available to all, though, have a look at the Cyberslate online option, offered on the Learning Incentive (Ben Bronz) website as a form of tutoring at a very reasonable cost."

From:

http://www.societyforqualityeducation.org/index.php/blog/oases-of-educational-excellence

I wonder if the School Board or School District for West Hartford was paying the tuition for Justina? Or maybe making a partial contribution?
Click to expand...

From part 1 in the BG:

She had been born prematurely and had struggled with learning difficulties in public school for years. Then, in early 2012, her parents persuaded the local school district to pay for Justina to attend an expensive private school for children with learning disabilities. Justina loved the school and formed close friendships. When her mounting fatigue made it too difficult for her to walk several hundred yards to the cafeteria, her friends took turns eating with her in a classroom.
Click to expand...

Also says Dr. Flores the gastroenterologist was not allowed to see Justina.

Explains some of the financial troubles:

Like his wife, Lou, a balding 55-year-old financial planner with piercing blue eyes, had never been shy about escalating conflicts when he felt he was right. He had once reported his biggest client to the Labor Department, accusing the firm of unfair business practices, which had led to the termination of his contract and years of financial stress for the family. The toll of that and all the medical bills threatened the loss of their home and helped put them in deep debt.......

The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011.
Click to expand...

That complaint was dismissed. From Dr. Korson:

Korson counseled caution. By its very nature, he stressed to Newton, mitochondrial disease can be a “setup” for accusations. (Korson and Newton both declined to speak specifically about Justina’s case, but records and correspondence obtained by the Globe describe their thinking.)

As Korson tells his patients, mitochondria function like the electrical grids of human cells, generating energy for the organs responsible for everything from vision to breathing to digestion. When those grids begin to falter, the body can resemble a big-city brownout during a heat wave, with the power drain affecting different organs in different ways.

That, Korson often reminded people, is what makes mito cases so complex. Patients would be seen by doctors in his field of metabolism. But given the many symptoms, they would also typically be seen by cardiologists, ophthalmologists, pulmonologists, neurologists, gastroenterologists, and a host of other specialists.
Click to expand...
 
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