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

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  • #61
http://westhartford.patch.com/group...stay-in-custody-of-massachusetts-dcf_d89e7f4e

Reporter: Ted Glanzer

Pelletier to be transferred to step-down unit at Tufts, ward of state for another 3.5 wks. Will now be in Connecticut, very fragile health. Pelletier family still under gag order but hopeful. Family has not been allowed to see Justina since December 20th.

Excellent letter by Kathleen Higgins quoted. Higgins is a former nurse at BCH, wrote to Comm. of Children and Families likening Justina's treatment to torture. Letter in form of complaint against Judge Joseph Johnston, Dr. Colleen Ryan, and the Massachusetts Dept. of Children and Families for the emotional and medical abuse Justina has suffered.

Attorney Barry Pollack called for closure of the psychiatric unit of BCH, known as Bader 5. Very powerful complaint.
 
  • #62
  • #63
Don't the doctors who diagnose the mitochondrial disorders stand up and fight for their patients or are they mostly ridiculed? Justina's case seemed almost identical to the teen who passed away after eventually becoming unable to breath. It was linked some pages back. I wonder if it's odd for two cases to be so alike, or if Justina can expect to develop the same issue with breathing.
 
  • #64
http://westhartford.patch.com/group...stay-in-custody-of-massachusetts-dcf_d89e7f4e

Reporter: Ted Glanzer

Pelletier to be transferred to step-down unit at Tufts, ward of state for another 3.5 wks. Will now be in Connecticut, very fragile health. Pelletier family still under gag order but hopeful. Family has not been allowed to see Justina since December 20th.

Excellent letter by Kathleen Higgins quoted. Higgins is a former nurse at BCH, wrote to Comm. of Children and Families likening Justina's treatment to torture. Letter in form of complaint against Judge Joseph Johnston, Dr. Colleen Ryan, and the Massachusetts Dept. of Children and Families for the emotional and medical abuse Justina has suffered.

Attorney Barry Pollack called for closure of the psychiatric unit of BCH, known as Bader 5. Very powerful complaint.

Thank you so much for this report and links, wendiesan! Great news that Justina will get out of that place and receive the care she needs.

Wow, what a mouthful from Mr. Pollack:

In addition, attorney Barry Pollack, a former federal prosecutor and the longest-tenured member of the Board of Directors of the Massachusetts Society for the Prevention of Cruelty to Children, called for the closure of the psychiatric unit of Boston Children’s Hospital, which is known as Bader 5.

“Based on [published] reports by several families, there has been a pattern of abuse of children by one or more healthcare providers at the Bader 5 inpatient unit of Children’s Hospital,” Pollack wrote. “My clients’ case involved the failure of Bader 5 providers to protect a 14-year-old girl, as set forth in the accompanying Complaint. I understand that other cases in which children have been confined in Bader 5 involve(d) controversial diagnoses concerning mitochondrial disorder (such as in the high profile Pelletier case and a less publicized Hilliard case), PANDAS (such as in the Wray case), and Lyme disease.”

Pollack went on to call Bader 5’s approach as “anti-parent” that “fails to respect the time-honored importance of the parental relationship, at the expense of children and families.”

“Children in Bader 5 can be blocked from the outside world and even at times daylight,” Pollack wrote. “For those children, like all victimized children, an important step in recovery can be an acknowledgement of wrongdoing by an institution that has failed them. Bader 5 has clearly failed and hurt many of its patients and their families.”
 
  • #65

From the 2nd link above:

However, sources close to the family said it was decided at Friday's hearing that as soon as next week the Pelletiers' 15-year-old daughter, Justina, would be transferred to a rehabilitation facility.

Another court date was set for Feb. 4, one source said.

Don't the doctors who diagnose the mitochondrial disorders stand up and fight for their patients or are they mostly ridiculed? Justina's case seemed almost identical to the teen who passed away after eventually becoming unable to breath. It was linked some pages back. I wonder if it's odd for two cases to be so alike, or if Justina can expect to develop the same issue with breathing.

I think Dr. Korson tried to stand up for Justina and was denied. He asked BCH to have a conference with all doctors involved when he found out they had changed the diagnosis and that was denied. IIRC he was not allowed to testify at the first court hearing.
 
  • #66
http://www.bostonglobe.com/metro/20...en-hospital/bwooR9SclCVXrVay8IaAKM/story.html

The Boston Globe
Teen in custody battle to be moved from hospital
Judge seeks to end impasse


By Patricia Wen and Neil Swidey | GLOBE STAFF JANUARY 11, 2014

snip

"It’s unclear how long Justina will remain at the transitional facility, or where she will go after that. But she is expected to stay long enough for a thorough evaluation of how well she adapts to a nonhospital setting, as well as how well her parents cooperate with their daughter’s team of caregivers.

The judge also signaled that once Justina has left Children’s, doctors at Tufts Medical Center would resume primary responsiblity for her care, effectively ending Children’s Hospital’s involvement in the long saga."

More...
 
  • #67
West Hartford Family Disheartened After MA Hearing On Custody Of Daughter

By WILLIAM WEIR, [email protected]
11:03 am, February 5, 2014


BOSTON — A West Hartford couple was distressed Tuesday after leaving juvenile court, frustrated in their attempts to regain custody of their sick 15-year-old daughter, Justina Pelletier, from the state of Massachusetts.

The case was continued to Feb. 13.

More...

http://touch.courant.com/#section/-1/article/p2p-79162494/
 
  • #68
Why is Justina's family panhandling for cash to pay her hospital bill when they won't owe anything for her medical care since the State of MA took custody of her 4 days into her hospital stay? Because the state has custody of Justina, she is assigned MassHealth as her primary insurance. If her parents have a private health insurance policy for her, MassHealth will become her secondary insurance (pay deductables).
http://www.mass.gov/eohhs/docs/dcf/health-med-services/faq-masshealth.pdf

Justina can be seen on the link below with a feeding tube. It would be very interesting to know when and why she had a feeding tube. Because there is a gag order on this case and HIPAA, we will only hear the parents' side to this story.
http://www.westhartfordnews.com/art...oc51a7cd6ac43e1332842736.txt?viewmode=default

The gag order should cover the parents too, right ? The agencies involved aren't supposed to talk anyway, because they're supposed to be representing a minor.
 
  • #69
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.

Sounds pretty typical for people struggling to survive in the face of extreme medical bills. That happens a lot in this country. BK due to medical bills is one of the main reason for bankruptcies.
 
  • #70
Being blunt here, I think it's clear that the hospital thinks there's some type of psychological disorder at play on the part of more than one family member and that they believe the nature of the disorder may be factitious. I wonder how the child is doing in the care of the hospital.

jmo

She continued to do quite poorly. She never improved.

Why is Justina's family panhandling for cash to pay her hospital bill when they won't owe anything for her medical care since the State of MA took custody of her 4 days into her hospital stay? Because the state has custody of Justina, she is assigned MassHealth as her primary insurance. If her parents have a private health insurance policy for her, MassHealth will become her secondary insurance (pay deductables).
http://www.mass.gov/eohhs/docs/dcf/health-med-services/faq-masshealth.pdf

Justina can be seen on the link below with a feeding tube. It would be very interesting to know when and why she had a feeding tube. Because there is a gag order on this case and HIPAA, we will only hear the parents' side to this story.
http://www.westhartfordnews.com/art...oc51a7cd6ac43e1332842736.txt?viewmode=default

The mother insisted she needed a feeding tube when she was hospitalized at Children's. They used that insistence as part of their case that this was medical abuse. They later inserted a feeding tube.
 
  • #71
From reading all the links provided, my hinky meter tells me the girl is where she needs to be to get healthy and strong. That's what's important. It's the only thing that matters IMHO. What a lousy situation though.
 
  • #72
From reading all the links provided, my hinky meter tells me the girl is where she needs to be to get healthy and strong. That's what's important. It's the only thing that matters IMHO. What a lousy situation though.

Where, the locked psych unit of Children's where she is right now? Because she never improved there, apparently. Or at Tufts who are resuming her care? Or in foster care? I'm unclear what you mean.
 
  • #73
Where, the locked psych unit of Children's where she is right now? Because she never improved there, apparently. Or at Tufts who are resuming her care? Or in foster care? I'm unclear what you mean.

The Boston Globe has reported that Justina has been transferred to a residential program at Wayside Youth and Family Support Network in Framingham.

http://touch.courant.com/#section/-1/article/p2p-79162494/

Sent from my Transformer Prime TF201 using Tapatalk
 
  • #74
Sounds pretty typical for people struggling to survive in the face of extreme medical bills. That happens a lot in this country. BK due to medical bills is one of the main reason for bankruptcies.

Jumping from your comments, I found some interesting information while posting on another thread.

Medical expenses are the leading cause of bankruptcy for families according to this reference. (http://www.cnbc.com/id/100840148)

Several studies have been done regarding actual costs for procedures done in hospitals vs. the billing for those procedures. In one study (http://articles.mercola.com/sites/ar...are-costs.aspx) the chargemaster (a hospital's internal price list) was discussed. It has been found that in most, if not all cases, the costs for each item are highly inflated and are priced several times higher than the items would actually cost the hospital. This excessive charging for services, supplies, equipment usage, drugs, supplements, nutrition, medical procedures, diagnostic tests brings in revenue. When every pill, every tissue, every paper cup of water, is charged, costs skyrocket. It boggles the mind to consider how many procedures and diagnostic tests, how much medication, and how many consultations Justina would have undergone since she was first incarcerated at BCH.

The costs for insurance companies is negotiated between companies and hospitals. Medicare, because of its scope, can usually negotiate a much lower rate than standard costs. Other companies may negotiate different rates for services and items provided for clients' care by a hospital. The costs for someone who is uninsured are to be paid in full by that person. Similarly, some insurance policies have limits on what they will cover. The balance of the costs remains the responsibility of the person receiving the treatment. For example, in the study I'm referencing (http://articles.mercola.com/sites/ar...are-costs.aspx), 3 CT scans would cost Medicare $825. For an individual who earned a little too much to be covered by Medicare but could not afford other insurance, the cost would be $7,000.

Apparently each hospital determines its own chargemaster so costs may vary greatly in every medical experience. It seems very logical to me that the parents, who could very well be facing huge bills for Justina's rehabilitation, would be making arrangements to pay those costs.

My rant now begins, so you may want to skip over the next bit.
I'm wondering whether the parents will eventually be able to sue BCH for wrongfully accusing them of child abuse since Justina had been doing very well under the care which they provided and has become almost paralyzed below the hips since her incarceration at BCH. (http://touch.courant.com/#section/-1.../p2p-79162494/) I think it would be poetic justice if BCH was forced to pay for Justina's rehabilitation and care at another hospital at the same rates the parents would have had to pay.

Since Justina's condition has declined so much in the year of the "medical treatment" at BCH, I wonder if the parents could somehow find a lawyer who could use the same criteria used to judge them as unfit parents in order to judge the BCH "doctors" and administrators who oversaw Justina's ever worsening condition at BCH as to their fitness to continue as medical professionals.

Deprived of friends, of education, of the presence and love of her family, deprived of normal everyday social interactions, it must have taken incredible inner strength for Justina not to break under the pressure of the failed BCH experiment to prove that she wasn't really sick. That she was able to convince a lawyer that she needed to be out of BCH, IMO, says even more about Justina's character.
 
  • #75
i think it is a safe bet we are only getting part of the story from all sides involved here, for various reasons. i would caution anyone from feeling like they can pass judgement on anyone involved just yet.

i have quite a bit of experience with a similar situation and with BCH and the Bader 5 unit specifically. i spent about 11 months visiting there an average of 4 times a week and directly involved in the care of a patient (family member).

it is a short term unit typically, for assessment. it is locked and it is mostly younger children, surprisingly and depressingly young children...

every patient room that i was in (maybe 6 or 7?) had a window, of the 4 or 5 common areas (meeting/visitation rooms, classrooms) that i was in i can only recall one that had no window. the common dining area has big windows all along one wall. there is a "quiet"/safety room that is windowless.

the patient was required if at all possible to have schoolwork and to attend a class daily where they got help with their work. obviously this isnt possible at all times/in every case.

visitors were always encouraged and often accomodated outside normal visiting hours, even during times when a parent (or both) were not allowed to visit other visitors were encouraged and never limited (obviously each case may vary).

as it is a locked unit they have safety restrictions and the patients personal items are checked and certain things are held for them and they have to ask for them and/or be supervised when they have them - but, some patients are allowed to have all kinds of things in their rooms, i did not find it to be overly restrictive at all.

there is tv available and game nights, pizza night, movie times etc

my experience with the nurses and other staff was mostly very good, there are times of course when you feel you arent being helped, ignored, the patient isnt getting the attention they need, but most of this in retrospect was typical and didnt reflect on the quality of the care imo - just indicative of the stressful and unpredictable nature of the job in a unit like that.

my experience with the doctors was mostly very good and i found them reasonable and knowledgeable, BUT several of them always seemed rushed (im sure they are, but its unacceptable if they make you feel that way every time they meet with you) and often seemed like they were overworked/rushed to the point that they didnt always have the facts completely right/werent always up to date on what was going on with the patient or didnt always seem to remember an important issue that was going on etc...

now, i was not the primary care person here but i was involved in decision making and direct interaction with the patient's team, i mention that because while i was able to be fairly understanding of what could be called shortcomings on the part of the doctors/team, i can totally understand how maybe i would not be so understanding if it were my child, i was paying the bills, i was the one making the absolute final decisions and bearing the weight of that.

security being called to deal with a patient or visitor is a "sporadically regular" occurrence.

anyway, i could try to answer any questions about the unit. i have a lot of opinions about some of the details in this story but i definitely dont feel informed enough to start drawing conclusions.

a few comments;

the story of the syringe being taken out in the patients room - wth? huge no-no, they ask you every time you enter if you have any prohibited items on you, sharps, medications, etc... the fact that it was brought inside is a big deal, that it was presented inside the patients room is a major question especially because one of the issues in this case is the patient not receiving medications that the family thinks she should be receiving.

the lawyers comment about patients being denied visitors, sunlight, education - as i detailed above this is not my experience, i would need to hear more but it sounds very suspect to me.

parents lose their cool both with the staff and with their children on a regular basis, HIGH stress situations and environment. as i said above, if you visit often enough you get used to security being asked to make an appearance and everyone being asked to go to their rooms or stay where they are with doors closed. this is for both issues with visitors and issues with patients.

the idea that BCH is trying to keep people there to make money doesnt float with me, they were always trying to stabilize the patient i was involved with and move them along to a more appropriate facility, even tho as i said this patient ended up being there for almost a year and it very rare someone would be there that long.

IF, repeat IF, BCH is right and the main issue here is psychiatric then it would not be surprising that this girl might go many more months or years with little improvement. personal research and experience with actual patients is my basis for this opinion.

i did many times wonder if they were making any progress in the case i was involved in, at times i would get frustrated and wonder if they knew what they were doing, but in the end i feel that some of these cases are just that complex, and i never felt like they had any agenda or were trying to force some particular diagnosis on the patient.

im not convinced there is any "bad guy" here, or certainly not enough proof of such yet. i wont pass any judgment on the parents, and i dont think it is shown that BCH has engaged in malicious or negligent conduct.
 
  • #76
whoops i forgot one thing - i really hope someone writes an article focusing on the issue of BCH not involving her old doctors in her treatment and allowing other opinions.

the details there are confusing and seem to go against what you would hope might happen or would usually happen in a case with no controversy.
 
  • #77
  • #78
i have not read this yet so im not sure if there is anything new in it;

http://abcnews.go.com/Health/advoca...-pelletier-held-state-pysch/story?id=22312907

I found this to be very informative.

Among other things, we learn of the desperation of the parents.
' "...We are David, not against Goliath, but against two Goliaths –- Boston Children's Hospital and the State of Massachusetts," Lou Pelletier told ABCNews.com. "To me it's a hopeless cause and the only way to win is in the court of public opinion."

We also learn more about Justina's condition since BCH discontinued all her medication for mitochondrial disease.
For example:
' "...She is going off a cliff," Pelletier said of his daughter, who is now confined to a wheelchair. "She looks awful and is pale and her hair is falling out. Her gums are receding and she has no body strength."

"The system has failed," he said. "I am battling the medical world that thinks it knows everything."'

He said that until the gag order was in place, Justina was "sneaking notes" to the family saying that she is in permanent pain....'

Another example:
' But Lou Pelletier broke his silence recently, telling ABCNews.com, "I have got to save my daughter's life."

We learn that people who suffer from rare diseases have come forward to demand that Justina be released from DCH influence, among them The Coalition for Diagnostic Rights.

' ...The Coalition says it has lodged a verbal complaint with the Massachusetts DCF for "medical child neglect and medical child abuse for failure to provide medical care" for Justina. They also argue that the state has violated an Interstate Child Placement Exchange agreement that would give Connecticut custody of Justina. They also voiced their concern to the office the Massachusetts Child Advocate office...'

Also an interesting description of mitochondrial disease.

The court decision delayed on February 4th is supposed to be rendered on Thursday, February 13th.
 
  • #79
What is Mitochondrial Disease?
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

more at link: http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934627
 
  • #80
I'll check out your ref. later momrids6.
It seems to be a genetic disease since it tends to run in families, as in Justina's family where her sister has also been diagnosed with the condition.
I wonder if the more frequent adult onset happens because the disease needs an environmental "trigger", and that the elements comprising that trigger are now more widespread than was previously the case.
 
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