This is alarming

[dakcp2001]

http://www.bostonglobe.com/metro/20...ain/Y7qvYTGsq8QklkxUZvuUgP/story.html?camp=fb

Has anyone read this article?

 

[The Mystery Machine]

http://www.bostonglobe.com/metro/20...ain/Y7qvYTGsq8QklkxUZvuUgP/story.html?camp=fb

Has anyone read this article?

Well that was weird beyond all reason. I can't say what is "right" here.

I find this to be the oddest thing about the story. I mean if indeed the father claims he was treating her for mitochrondria disorder, then what the heck was she doing at a boarding school?

I don't know. Something is "rotten" here with this family imo.

During the year before her hospitalization, when she attended a private school in Connecticut designed for children with learning disabilities, Justina had forged close friendships. And those classmates were desperate for answers, as were her friends from an ice skating club.

 

[luvmy3]

Well that was weird beyond all reason. I can't say what is "right" here.

I find this to be the oddest thing about the story. I mean if indeed the father claims he was treating her for mitochrondria disorder, then what the heck was she doing at a boarding school?

I don't know. Something is "rotten" here with this family imo.

Where did you read it was a boarding school?

I agree OP, it is alarming.

 

[Tozzie]

http://www.bostonglobe.com/metro/20...ain/Y7qvYTGsq8QklkxUZvuUgP/story.html?camp=fb

Has anyone read this article?

I have heard of that happening before and not in Boston, years ago maybe 15 I remember reading a story about Sloan Kettering filing a motion for custody of a child, the hospital stated the parents refused treatment, the thing is they didn't refuse treatment they wanted a second opinion and were going to Texas and MD Anderson. The ego's of the doctors at Sloan couldn't deal with it.

 

[Wishing on a star]

VERY ALARMING!!!!!!!

OMG....

I am a firm believer in mitochondrial disorders, which can also present as CFS, etc... and many other rarely understood things that have always been written off as 'your crazy'.

The one thing that I do find disturbing, however, is the mention of the mother sitting there with needles (for diabetes???) openly visible, during a visit. WOW..... No conceivable reason, or even reasonable rational believable explanation on that one. That is just OFF.

Even if the hospital does have concerns and probable cause about these parents, what is disturbing is that they have just simply, without any due process, locked this child up. Does she even have a children's advocate, to see that she get other qualified opinions, etc... Apparently not?

And, the fact that nobody wants to hear from this girls original doctor, and to consider whether his original diagnosis is credible, and what info and tests it is based on...

When it comes to this hospital, it seems that you never can tell where evil lurks.

VERY, VERY, Disturbing.

(And, don't get me started on increasing governmental influence and control in our medical care... That is even more disturbing)

 

[wiigirl]

Where did you read it was a boarding school?

I agree OP, it is alarming.

x2

 

[MaryAnnDVC]

Very disturbing.

It was a very long article and I read it all, but I don't recall anything about a "boarding school", but a "private school." Would it have been odd if it WAS a boarding school for children with learning disabilities? The father wasn't treating her...a doctor was.

Two of my children and my mother were treated at Boston Hospitals, including Children's. I have to say, I just loved the Dr who treated my one daughter...we saw him pretty regularly, and we ended every appointment with a "Do you understand the treatment? Do you have questions? Are you comfortable with the treatment?" But I also felt that there is an air of cockiness there, and when my mother was treated at Brigham and Women's.

My DD was also treated at Hasbro Children's Hospital in Providence, RI, and there was a vast difference from Boston in parental involvement, and the importance of us, the parents, in the care of the patient. I always said, all things being equal as far as quality of medical treatment, I'd take Hasbro over Boston Children's, hands down, because of their emphasis on the emotional state of the patient and the parents...they just cared more about how everyone FELT, and what everyone understood, about the care; our involvement was crucial, or at least they made us feel that way. They bent over backwards for us to make sure we were OK about everything that transpired, and we were.

Although surely there could still be issues at Hasbro, and surely there are people that have had good experiences at Boston Children's (as we most certainly did, at times), this was ours, and I can't imagine Hasbro not calling everyone involved in her care together to work out any concerns.

My parents' Harvard educated Dr couldn't diagnose my father's pain in his left shoulder as a heart attack, and took 3 years to send my mother for an MRI for neck pain, both which ultimately led to their deaths. So maybe I'm a just a little unimpressed with the "Harvard" designation.

One more thing...long story short, because I don't even remember exactly how it played out. When my DGD was born two years ago, she had standard medical tests done in the hospital, and one of them was "borderline". Don't recall which. DD brought DGD back for a re-test, which was followed by going around in circles with phone calls saying "You need to bring her back" (they had), showing up for ANOTHER re-test, only to be asked "Why are you here? It was already done", phone calls to/from the pediatrician's office, and Yale, only to get a letter from the state saying that if they didn't get her retested (I repeat...they HAD, and the re-test was normal), that DCF would get involved. Honestly, I was was scared that, with all the confusion, DGD would be taken first, and the issue straightened out later.

 

[Wishing on a star]

dd brought dgd back for a re-test, which was followed by going around in circles with phone calls saying "you need to bring her back" (they had), showing up for another re-test, only to be asked "why are you here? It was already done", phone calls to/from the pediatrician's office, and yale, only to get a letter from the state saying that if they didn't get her retested (i repeat...they had, and the re-test was normal), that dcf would get involved.

omg!!!!!!

 

[Mickey'snewestfan]

Well that was weird beyond all reason. I can't say what is "right" here.

I find this to be the oddest thing about the story. I mean if indeed the father claims he was treating her for mitochrondria disorder, then what the heck was she doing at a boarding school?

I don't know. Something is "rotten" here with this family imo.

It says private school not boarding school

 

[mnrose]

It is very disturbing. It's one thing when parents want to preclude their child from getting treatment (and we've all heard about these cases), but quite another when the parents simply wish to take the child to another (respected) medical institution in the same city. No hospital should be able to FORCE me to choose their services over that of another. Ridiculous.

Also, I am very bothered by the claims that the mother was somehow to blame for all this. Look, parents whose child is confronting ANY serious medical problem are going to be stressed to the breaking point. They make look irrational. Crazed. They make act irrational and crazed. If my kid had an illness that was less than well understood, I know if would make me crazy and probably appear irrational. It's pathetic to be somehow "blamed" when that happens.

It kind of reminds me of those cases in the 70's and 80's when it was popular to accuse day care providers of being pedophiles...many were vilified in the press and in their communities, only for us later to find out that it was not true. Here, we have a hospital that is seemingly on a witch hunt for "medical abuse" cases and seeing them even where they are not.

It sounds like this young lady's case is very difficult. One would think, however, that if Children's in Boston is correct (about it being a somatic disorder caused by parental stress, etc), that after 10 months of being highly separated from her parents and undergoing treatment that CHILDREN's specifies that she would be getting better....and she is not. That alone, one would think, should cause them to rethink.....but of course, they are too deeply committed to their "theory" at this point. I don't see them backing off, even if they should.

 

[RitaZ.]

It was already done", phone calls to/from the pediatrician's office, and Yale, only to get a letter from the state saying that if they didn't get her retested (I repeat...they HAD, and the re-test was normal), that DCF would get involved. Honestly, I was was scared that, with all the confusion, DGD would be taken first, and the issue straightened out later.

That is scary.

ETA: About 18 years ago, there was a Munchausen by Proxy case in our city that made the national news. For anyone interested, look up the name Kathy Bush. In that family's case, the girl's health improved significantly when she was removed from her mom. Her father and siblings were allowed to visit her, but not her mom. I believe the mom served some prison time. In Justina's case, her health hasn't improved since being removed from her parents' care. It sounds like a very complicated case.

 

[The Mystery Machine]

It says private school not boarding school

My bad. Sorry.

The whole thing is absolutely nuts.

It was really hard to sort through the article of who are the "bad guys" here.

Now that being said, we have had a couple of landmark cases here in St. Louis where St. Louis Children's Hospital vindicated the parents. Here is one of them.

Within a month, D.J. was diagnosed at St. Louis Children's Hospital as having methylmalonic acidemia (MMA), a rare genetic disorder in which the body does not break down proteins properly. The Stallingses believed that Ryan might have suffered from the same disease, and so did their attorney, Eric Rathbone. However, during her three-day trial in January 1991, the similarities between Ryan's and D.J.'s illnesses were never introduced in court because Rathbone failed to secure any expert medical witnesses. (The court later ruled that Stallings had received inadequate counsel.) Meanwhile prosecutor George McElroy built a persuasive ease. Police and social workers testified that Patti showed little emotion upon learning Ryan was dead; investigators produced one bottle of antifreeze from the Stallingses' home as evidence, and the prosecutor said nothing else could explain the ethylene glycol found in little Ryan's body. After 10 hours of deliberations, a jury found Patti guilty of first-degree murder.

Sentenced to life without possibility of parole, Patti was scared and angry. "I was so hurt and so confused," she says. Waiting numbly as the days slipped by in prison, Patti could never have imagined the dramatic turn of events to come. After following the case in the papers, the chairman of the biochemistry department at St. Louis University, William Sly, suspected that Ryan might have had MMA like his brother and could well have died from the disease. Sly quickly contacted James Shoemaker, director of the university's metabolic-screening laboratory. After testing frozen samples of Ryan's blood serum, Shoemaker found evidence that Ryan did have MMA. The original lab reports finding lethal concentrations of ethylene glycol in Ryan's blood were incorrect and based on faulty data.

Whole story.

http://www.people.com/people/article/0,,20111526,00.html

 

[Pea-n-Me]

A few things important to note:

A hospital spokesman said the facility seeks to transfer patients to less medically intensive environments as soon as they are medically ready and a location is available. The exact location however, would be up to the state child protection agency.

Due to the nature of the disease, she likely has medical issues that are keeping her hospitalized there.

Only the broad outlines of her life in Bader 5 are known. Officials at the state child protection agency and Childrens Hospital, as well as her current and past doctors, would not discuss her care, citing patient confidentiality. Still, the Globe obtained extensive hospital, agency, and legal records in her case, as well as dozens of e-mails among the parties, and interviewed others involved in her life to more fully tell her story.

We have NOT heard Children's side of the story because they are not allowed to speak about it.

Places like Children's, Mass General and Brigham and Women's get the most difficult cases around so naturally there are often the most difficult circumstances - medical and otherwise - to deal with. The buck stops there.

They are also part of the same Harvard network and many are on staff at all places at the same time, as well as the medical school.

This story, like many others in the media, is slanted, and tries to make Children's and DFC out to be the "bad guys". We will see what the judge has to say having heard all details in the case from all parties.

Justinas hospitalization is the most extreme of a handful of unusually contentious cases over the last 18 months involving Childrens Hospital and the Department of Children and Families. A Globe review of these and other cases nationally has found that most involve a disputed medical diagnosis, charges of parental misconduct filed or threatened by the hospital, and the inability of the state child-welfare agency to provide effective intervention.

At issue in these cases is also the use of a controversial term, medical child abuse, that can be leveled against any parent who is perceived to be acting against the best interests of his or her child in a medical setting. Child protection specialists stress how much children can suffer at the hands of parents intent on over-medicalizing or interfering with their care. But parents, including the Pelletiers, contend they were hit with these charges simply because they disagreed with the hospitals diagnosis and wanted to take their child elsewhere for treatment.

The problem is that there are few good paths to resolution once doctors are convinced that parents are harming their child. The tools available are exceedingly blunt and emotionally inflammatory: The system basically requires doctors to suggest the parents are unfit and may deserve to temporarily lose custody of the child, as well as any voice in the childs treatment.

The Department of Children and Families is supposed to referee such disputes, but the agency is ill-equipped to intercede at the highest levels of medicine. Across the entire state, the DCF staffers with formal medical training consist of just one half-time pediatrician, one half-time psychiatrist, and a handful of nurses. Five years after the Legislature approved funding for a physician medical director, the agency has yet to fill the slot.

Instead, the agency regularly turns to doctors in the medical mecca of Boston for free consults. Its deputy commissioner acknowledges that, given Childrens standing as one of the worlds top pediatric hospitals, the state often looks there first for assistance  which can create at least the appearance of a conflict of interest when the agency is weighing abuse allegations brought by the hospital.

The medical capacity of DCF is nil, said Dr. Stephen Boos, the medical director for the team that handles child protection cases at Baystate Medical Center in Springfield. Yet he stressed that cases of mitochondrial disease  the diagnosis at the center of the standoff over Justina  are some of the thorniest in medicine. No doctor wants to miss diagnosing this relatively new but still murky cellular energy-production disorder because it can be fatal. But mistakenly diagnosing it can send a child down the road of needless and potentially harmful procedures and medication. As a result, Boos said, there are lots of value judgments, and in Boston, with these super-subspecialists, these egos are going to be high.

His recommendation for resolving these conflicts, widely shared by child-abuse specialists at top hospitals, is to convene the clinicians involved in the childs care over the years, try to reach consensus on a plan, and work with the parents. The state child protection agency can orchestrate such a meeting as can the hospital. Boos said its critical that all key players be allowed to air their views candidly yet respectfully. Its better, he said, if everyone took a humility pill.

 

[minkydog]

I agree, as way off-kilter as this whole case seems, we need to wait for the judge's ruling on this. This whole case just seems like something from the Twilight Zone.

I was recently involved in a case where a doctor alleged medical neglect against a parent because she made him angry when she missed a surgical appointment due to transportation issues. True, this young parent had missed some other appointments, but she was very young and had several children, the youngest of whom had some serious GI issues. She was beyond overwhelmed, but had no support from any quarter. CPS took the baby away within hours of the missed appointment and she was placed with a foster parent and forbidden contact with her mother. It was really the saddest thing.

The doctor alleged that the baby was developmentally delayed due to neglect and when I saw her she did seem a little behind on some of her milestones, but she was a happy, plump little thing. She had a feeding tube in her nose and a monitor belt around her chest and one taped to her foot--those things greatly interfered with her ability to get around and play properly. The case went before a judge within a week and he ruled that the doctor's accusation was out of order--the baby was restored to her mother and the mother was court-ordered parenting classes and other supports. Now I ask, why couldn't that have been done to start with?

I will be watching this case with interest.

 

[RitaZ.]

It is very disturbing. It's one thing when parents want to preclude their child from getting treatment (and we've all heard about these cases), but quite another when the parents simply wish to take the child to another (respected) medical institution in the same city. No hospital should be able to FORCE me to choose their services over that of another. Ridiculous.

Also, I am very bothered by the claims that the mother was somehow to blame for all this. Look, parents whose child is confronting ANY serious medical problem are going to be stressed to the breaking point. They make look irrational. Crazed. They make act irrational and crazed. If my kid had an illness that was less than well understood, I know if would make me crazy and probably appear irrational. It's pathetic to be somehow "blamed" when that happens.

It kind of reminds me of those cases in the 70's and 80's when it was popular to accuse day care providers of being pedophiles...many were vilified in the press and in their communities, only for us later to find out that it was not true. Here, we have a hospital that is seemingly on a witch hunt for "medical abuse" cases and seeing them even where they are not.

It sounds like this young lady's case is very difficult. One would think, however, that if Children's in Boston is correct (about it being a somatic disorder caused by parental stress, etc), that after 10 months of being highly separated from her parents and undergoing treatment that CHILDREN's specifies that she would be getting better....and she is not. That alone, one would think, should cause them to rethink.....but of course, they are too deeply committed to their "theory" at this point. I don't see them backing off, even if they should.

Exactly. Perhaps they're trying to save face at this point.

In any event, I feel for that poor girl and her family.

 

[Pea-n-Me]

An update on the case today: http://www.boston.com/2013/12/20/ju...controversy/ljRBLSKEA3Xd6e1ZUIWthN/story.html

 

[MaryAnnDVC]

An update on the case today: http://www.boston.com/2013/12/20/ju...controversy/ljRBLSKEA3Xd6e1ZUIWthN/story.html

Thanks for posting an update.

Geez, that's just so complicated. I wish the parents hadn't gotten angry...doesn't help their case...but at the same time, why wouldn't they be angry? The whole issue of them wanting to take her 10 months ago to her Dr at Tufts, and that's what started this whole thing, is just crazy. Tufts is right up there with other prestigious medical schools/hospitals. It's not like they were taking her for some voodoo treatment.

Hopefully, this independent investigator is, in fact, independent and will coordinate getting all parties together to fix this! At this point everyone is so dug into protecting their position that this poor girl is the one stuck in the middle and suffering. 10 months, with more to come, on a locked psychiatric ward, while everyone battles it out...awful.

 

[bellebud]

I've known about this case because my family has a genetic disorder, a very rare form of muscular dystropy, that is sporadic in nature (Periodic Paralysis for any medical professionals out there). This story has been going around our forums as scary, because people w/ our disorder can present some symptoms similar to this girl.

It runs in my husbands family, and hubby and both of our kids have it. DD14 was a dancer, and one minute would be fine and at 100% strength, and literally the next minute could be weak, have to sit down, or get 'stiff' and stuck in a position (all temporary). So someone who has this disorder, but isn't diagnosed yet, could be called 'crazy' (and many, many have been called that by doctors). In many cases, it's a very tricky diagnosis.

However, I really don't like the story about the mom having her diabetic needles in her lap during a visit... that just strikes me as really, really, really weird. Now, I can imagine her not being in a very clear state of mind because of all of this, but wouldn't the dad be like "why are those needles on your lap?" Just kinda weird.

I hope it gets resolved quickly.

 

[hereyago]

I missed this thread when it first began.

Yes, it is alarming, but sadly, nothing new.

Patient's Rights have become a very sensitive subject for me after having to deal with 1 particular arrogant doctor who had my mom earlier this year.

I think it is a combination of hospitals/doctors *some*too afraid of being sued if the patient gets a second opinion and the first place was wrong, or if the patient refuses, something happens and they get sued or in some cases, hospitals and doctors get their little egos hurt when a patient refuses or knows their rights and calls them on it.

If you google some, you can come up with cases that are scary:
Amber Marlowe: in 2004, she went to the hospital and they told her that her baby was big, she had big babies before, so nothing new. The baby was not in distress and they told her she had to have a c section.
She refused. They kept trying to get her to change her mind. She left the hospital went to another and her baby was born "naturally" and no complications. She later found out, while they were trying to convince her to do it, someone from the hospital went before a judge to ask for guardianship of her unborn baby and the judge ruled that if she came back to have the baby there, she would be "made" to have a c section.

Let's not forget about the recent case of Sutter hospital with the couple who wanted a second opinion for their baby. Hurt Sutter's feelings, because they sent a cop over to the other hospital to see if the couple did go the 2nd hospital and the cop spoke with the dr there and said they were good, the baby wasn't any harm. Next day, CPS and cops come in without a warrant and forced their way in.

The Amish family who had their daughter getting cancer treatment that was making her worse and now they have fled the country. She has been shown to be cancer free, but by goodness, she will be made to continue if she returns.

Barbara Mancini: a woman who is now on trial for helping her dad (who was in hospice) kill himself. Well the scary part of it, was how dare he try to kill himself in hospice care. Dying with dignity honestly I have found means going out the way "others" think you should do it.The DNR he had was worthless because he was brought back just to die again a few days later.

Obviously, there are more cases. A lot of people don't want to talk about it probably fear of retribution.

So the case with this young teen, alarming, yet nothing new. Look up Maryanne Godboldo as well, that was a couple years ago.

 

[MaryAnnDVC]

I've known about this case because my family has a genetic disorder, a very rare form of muscular dystropy, that is sporadic in nature (Periodic Paralysis for any medical professionals out there). This story has been going around our forums as scary, because people w/ our disorder can present some symptoms similar to this girl.

It runs in my husbands family, and hubby and both of our kids have it. DD14 was a dancer, and one minute would be fine and at 100% strength, and literally the next minute could be weak, have to sit down, or get 'stiff' and stuck in a position (all temporary). So someone who has this disorder, but isn't diagnosed yet, could be called 'crazy' (and many, many have been called that by doctors). In many cases, it's a very tricky diagnosis.

However, I really don't like the story about the mom having her diabetic needles in her lap during a visit... that just strikes me as really, really, really weird. Now, I can imagine her not being in a very clear state of mind because of all of this, but wouldn't the dad be like "why are those needles on your lap?" Just kinda weird.

I hope it gets resolved quickly.

Didn't look back at the story. Were they in a case, or out in the open? Who said they were out? Was she going to have to use one? Did she grab them as she got out of the car, and they didn't fit in her handbag? Did she take them out right before she was going to go give herself an injection? Did the nurses misinterpret the whole thing? And if she did have loose diabetic needles out...why? To make her case worse?? To shoot up her daughter??

I missed this thread when it first began.

Yes, it is alarming, but sadly, nothing new.

Patient's Rights have become a very sensitive subject for me after having to deal with 1 particular arrogant doctor who had my mom earlier this year.

I think it is a combination of hospitals/doctors *some*too afraid of being sued if the patient gets a second opinion and the first place was wrong, or if the patient refuses, something happens and they get sued or in some cases, hospitals and doctors get their little egos hurt when a patient refuses or knows their rights and calls them on it.

If you google some, you can come up with cases that are scary:
Amber Marlowe: in 2004, she went to the hospital and they told her that her baby was big, she had big babies before, so nothing new. The baby was not in distress and they told her she had to have a c section.
She refused. They kept trying to get her to change her mind. She left the hospital went to another and her baby was born "naturally" and no complications. She later found out, while they were trying to convince her to do it, someone from the hospital went before a judge to ask for guardianship of her unborn baby and the judge ruled that if she came back to have the baby there, she would be "made" to have a c section.

Let's not forget about the recent case of Sutter hospital with the couple who wanted a second opinion for their baby. Hurt Sutter's feelings, because they sent a cop over to the other hospital to see if the couple did go the 2nd hospital and the cop spoke with the dr there and said they were good, the baby wasn't any harm. Next day, CPS and cops come in without a warrant and forced their way in.

The Amish family who had their daughter getting a "experimental" cancer treatment that was making her worse and now they have fled the country. She has been shown to be cancer free, but by goodness, she will be made to continue if she returns.

Barbara Mancini: a woman who is now on trial for helping her dad (who was in hospice) kill himself. Well the scary part of it, was how dare he try to kill himself in hospice care. Dying with dignity honestly I have found means going out the way "others" think you should do it.The DNR he had was worthless because he was brought back just to die again a few days later.

Obviously, there are more cases. A lot of people don't want to talk about it probably fear of retribution.

So the case with this young teen, alarming, yet nothing new.

It's downright scary. I remember reading an article years ago, where a female OB-GYN was interviewed, and she said that if she were in the early 20s weeks along in a pregnancy (the article being about how they can save a baby earlier and earlier, but at what risk to the baby) and was having certain medical issues, she would just stay home and let herself miscarry, because once she went to the hospital, she could lose any right to make decisions about her care and the care of the baby.

Then there's this story. It disgusts me. The thought of MY BASICALLY DEAD BODY, or that of a loved one, being poked and prodded and kept as a human incubator against my will, and against my family's will, for MONTHS makes me sick. This woman was 14 weeks pregnant, so theoretically could be kept alive for 6+ MONTHS.

http://shine.yahoo.com/parenting/texas-father-barred-taking-pregnant-wife-off-life-200600388.html

Per the article, "according to Texas law, life-sustaining procedures may not be withheld or withdrawn from a pregnant woman, — even if she has an advance health care directive (also called a living will) stipulating that she does not want to be kept alive on a machine." And "Texas and 11 other states have automatically invalidated pregnant women's advance directives to refrain from using extraordinary measures to keep them alive, and others have slightly less restrictive but similar laws."

And you have to wonder what will happen to this baby if it survives. Is the state of Texas going to appoint a legal guardian to determine its future, possibly without its father/mother's family? If the baby is born with major health issues (the mother was found blue and without oxygen for a period of time) is the state going to kick in with free and life-long healthcare? And how far along does a woman have to be before the state of Texas, and other such states, takes away all her rights to decide her own healthcare with an advance directive...if she's 4 weeks and just found out she's pregnant, and then suffers a catastrophic illness/accident? 6 weeks? 8? 10? 12? 14, as this woman was? At exactly how many days/weeks gestation does a woman lose all her rights. Honestly, it sounds like some sort of Frankenstein-like experiment.