Family battling Children’s Hospital to bring teen home for Christmas #2

[CathyinTexas]

Tufts declined to review and take on this case in April 2013. They were brought back into the case by the judge's order in early 2014. I am sure this was the outcome of a lot of discussion and negotiation,

Where is the link that said Tufts refused to take on the Justina's case? I don't think that is correct.

 

[Morag]

They probably don't trust the DCF to do the right thing and release Justina. Linda may have been given some disturbing information about Justina's health. She has been untreated for a long time, as well as being given psychiatric drugs. I know that I can't prove it, but that is what they give psych patients in psych wards. Her eyes in some of the pictures over the months look like she was medicated, also her slurred speech.

Both Connecticut and Massachusetts are in the top 10 states for children's health. It's almost laughable to think that they would deliberately permit a child to dwindle and die if they had the ability to save her. And her speech was slurred when she arrived, as is that of her sister who has mito. They didn't take this child's case on for any reason other than to help her. She has had years of perhaps poor care and treatment prior, but she has remained out of a hospital for nearly a year now- no surgeries, no urgent trips to the ER. This child is sick, but she's being helped now.

 

[sweetmom]

Doesn't "broader constitutional issues" usually take a long time to ever get resolved through the courts? Justina needs attention now, with her eating and walking. Whether is mito or somatoform or both, she could lay around and die if she chokes on something or gets so dehydrated from not being able to swallow. I'm assuming that is okay now, and walking is her main issue.

If she were unable to swallow, she would be hospitalized and fed via a tube and hydrated via IV. The fact that she is now in a non-hospital facility in CT means that is not a current issue. Please keep in mind that Justina's swallowing and walking difficulties were problems she had before the family took her to BCH, when she was a patient of Dr. Korson.

 

[sweetmom]

Both Connecticut and Massachusetts are in the top 10 states for children's health. It's almost laughable to think that they would deliberately permit a child to dwindle and die if they had the ability to save her. And her speech was slurred when she arrived, as is that of her sister who has mito. They didn't take this child's case on for any reason other than to help her. She has had years of perhaps poor care and treatment prior, but she has remained out of a hospital for nearly a year now- no surgeries, no urgent trips to the ER. This child is sick, but she's being helped now.

Good points, Morag. But aside from what the family has said, I do not believe that there has ever been an official diagnosis stating Justina's sister, or Justina, definitely does have mito.

They have symptoms that are similar and have been treated for mito in lieu of a more definitive diagnosis. As we know from Justina's story, the mito "vitamin cocktail" treatment did not end her problems with walking, swallowing, slurred speech, etc. That may be because, while they absolutely do have problems, mito may not be the cause. We cannot say for sure because none of us have seen their confidential medical records.

 

[epiphany]

And sometimes people actually are wronged.
This alleged case sounds so much like Justina's, some people were actually confused thinking the case was about her.
But it's not. And it doesn't sound like that girl had loud parents, as we haven't heard about this case until now. But BCH is still accused of doing virtually identical thing as it alleged to have done to Justina.

This case involving Boston Children's Hospital and DCF does sound very similar to Justina's:

snipped

After more than a year of treatment that included confinement and forcible restraints, her “condition substantially deteriorated,” and the girl was dis
charged July 13, 2013, for “lack of progress,” the suit states.

snipped

“DCF has not established any rules or regulations concerning ‘medical child abuse’ or ‘doctor shopping’ but has taken action against parents, such as the mother and father, for consulting with and seeking care for their children from multiple doctors or specialists at different facilities,” the suit states.

http://bostonherald.com/news_opinion/local_coverage/2014/05/suit_says_dcf_violated_parents_rights

 

[epiphany]

This is an old story, dated April 1, 2014. That was the first and last time we have heard from Atty. Dershowitz on the Pelletier matter.

If Alan Dershowitz is consulting with the Pelletier attorneys, he is providing his expert advice to their attorneys (consulting), and not micro-managing as he stated.

IMO, not hearing from Dershowitz and it not being reported by MSM in the last 60 days, does not necessarily equate to Dershowitz not providing his professional advice to the P's attorneys quietly and behind the scenes...But I suppose we shall soon see.

 

[liljim]

They probably don't trust the DCF to do the right thing and release Justina. Linda may have been given some disturbing information about Justina's health. She has been untreated for a long time, as well as being given psychiatric drugs. I know that I can't prove it, but that is what they give psych patients in psych wards. Her eyes in some of the pictures over the months look like she was medicated, also her slurred speech.

wait i thought the speech problems were from her mitochondrial disease, now they are from psychiatric medicine we dont even know if she is taking?

 

[sweetmom]

Originally Posted by CathyinTexas View Post
My sister lives in West Hartford and she didn't know anything about it two weeks ago. It is disappointing that others in their town wouldn't care about this injustice.

People in my town, West Hartford, do care about injustice.

But the lack of vocal support for the Pelletiers suggests to me that they do not see injustice in this case. There have been stories on the local Patch website and in the Courant, our daily paper, so the information is out there. But evidently people are not convinced that the family's version of events is credible.

 

[epiphany]

Originally Posted by CathyinTexas View Post
My sister lives in West Hartford and she didn't know anything about it two weeks ago. It is disappointing that others in their town wouldn't care about this injustice.

People in my town, West Hartford, do care about injustice.

But the lack of vocal support for the Pelletiers suggests to me that they do not see injustice in this case. There have been stories on the local Patch website and in the Courant, our daily paper, so the information is out there. But evidently people are not convinced that the family's version of events is credible.

I've googled CNN and Justina Pelletier, as well as NY Times and Justina Pelletier and I see no hits on my first page for the past year, past month, etc.

It's not being reported by MSM that many (perhaps, in the Northeast) read, that is why IMO rather than lack of support for the family, it may indicate that many may not even be aware of the case.

 

[Morag]

I've googled CNN and Justina Pelletier, as well as NY Times and Justina Pelletier and I see no hits on my first page for the past year, past month, etc.

It's not being reported by MSM that many (perhaps, in the Northeast) read, that is why IMO rather than lack of support for the family, it may indicate that many may not even be aware of the case.

There was plenty of coverage initially in the Hartford Courant, and certainly in the Boston Globe. There was also a fair amount of television coverage on the Hartford stations. My impression from people I know in West Hartford is that they have more faith in the institutions involved (CCH, BCS) than they do in the groups which have associated themselves with the Pelletiers.

New Englanders are capable of making up their own minds, and we are well-supplied with media of all sorts to get the information we need. If local supporters who actually know the Pelletiers had spoken out, the story might have gotten even more coverage. But the people involved with various political and religious groups did not seem to know the family at all and were thus unable to rally people to the Pelletiers' side.

We saw a sick child who was being cared for by one of the best hospitals in the country. And we saw a couple who seemed unable to comport themselves in a way that would benefit their daughter. Additionally, there was information commonly known locally about the family, which may have also influenced coverage and opinion.

 

[Linda7NJ]

Doesn't "broader constitutional issues" usually take a long time to ever get resolved through the courts? Justina needs attention now, with her eating and walking. Whether is mito or somatoform or both, she could lay around and die if she chokes on something or gets so dehydrated from not being able to swallow. I'm assuming that is okay now, and walking is her main issue.

Broader issue IMO was the gag order...resolved long ago.

 

[sweetmom]

There was plenty of coverage initially in the Hartford Courant, and certainly in the Boston Globe. There was also a fair amount of television coverage on the Hartford stations. My impression from people I know in West Hartford is that they have more faith in the institutions involved (CCH, BCS) than they do in the groups which have associated themselves with the Pelletiers.

New Englanders are capable of making up their own minds, and we are well-supplied with media of all sorts to get the information we need. If local supporters who actually know the Pelletiers had spoken out, the story might have gotten even more coverage. But the people involved with various political and religious groups did not seem to know the family at all and were thus unable to rally people to the Pelletiers' side.

We saw a sick child who was being cared for by one of the best hospitals in the country. And we saw a couple who seemed unable to comport themselves in a way that would benefit their daughter. Additionally, there was information commonly known locally about the family, which may have also influenced coverage and opinion.

Beautifully said, Morag. I completely agree. There has been extensive coverage by the Boston Globe, and the Boston Herald, about a half-dozen stories here in the Courant, many on West Hartford Patch, and TV coverage locally, plus the Dr. Phil show, Glen Beck's show and his Blaze website, and more.

I think I lot of the media coverage was superficial, sloppily reported and too gullible in accepting everything the family said as proven fact, but there certainly was ample coverage locally. If people aren't supporting them, it's not because they do not know about the case. In fact, it may be because they DO know.

 

[epiphany]

There was plenty of coverage initially in the Hartford Courant, and certainly in the Boston Globe. There was also a fair amount of television coverage on the Hartford stations. My impression from people I know in West Hartford is that they have more faith in the institutions involved (CCH, BCS) than they do in the groups which have associated themselves with the Pelletiers.

New Englanders are capable of making up their own minds, and we are well-supplied with media of all sorts to get the information we need. If local supporters who actually know the Pelletiers had spoken out, the story might have gotten even more coverage. But the people involved with various political and religious groups did not seem to know the family at all and were thus unable to rally people to the Pelletiers' side.

We saw a sick child who was being cared for by one of the best hospitals in the country. And we saw a couple who seemed unable to comport themselves in a way that would benefit their daughter. Additionally, there was information commonly known locally about the family, which may have also influenced coverage and opinion.

Agree that The Boston Globe did a wonderful (even superb) job of coverage, and without their coverage I may not have noticed this case.

But I don't recall reading any major media coverage of this case until late December 2013 or early January 2014...just when did The Boston Globe begin covering?

 

[txsvicki]

Both Connecticut and Massachusetts are in the top 10 states for children's health. It's almost laughable to think that they would deliberately permit a child to dwindle and die if they had the ability to save her. And her speech was slurred when she arrived, as is that of her sister who has mito. They didn't take this child's case on for any reason other than to help her. She has had years of perhaps poor care and treatment prior, but she has remained out of a hospital for nearly a year now- no surgeries, no urgent trips to the ER. This child is sick, but she's being helped now.

Right, and if she goes home too soon she could end up in the same shape and choke or more tubes in her. Hopefully they will look at this past year.

 

[jjenny]

Right, and if she goes home too soon she could end up in the same shape and choke or more tubes in her. Hopefully they will look at this past year.

Too soon for what? She could walk before she ended up in BCH, how is she in better shape now?

 

[Linda7NJ]

Too soon for what? She could walk before she ended up in BCH, how is she in better shape now?

No, she couldn't walk when she went to BCH!!!!
The link has been provided to you more than once.


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[jjenny]

No, she couldn't walk when she went to BCH!!!!
The link has been provided to you more than once.


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No, she had trouble walking. Which is not the same as "couldn't walk."

 

[Linda7NJ]

No, she had trouble walking. Which is not the same as "couldn't walk."

She wasn't the picture of good health when she arrived. Far far from it.

She is far better NOW than under the care of her parents and their dragging her from doctor to doctor...hospital to hospital.

Thankfully, there is a qualified team in place and oversight by qualified medical professionals.

She was discharged AMA from another hospital a week or so before she arrived at BCH ...she arrived at BCH in the middle of the night..in a blizzard...by ambulance.





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[jjenny]

She wasn't the picture of good health when she arrived. Far far from it.

She is far better NOW than under the care of her parents and their dragging her from doctor to doctor...hospital to hospital.

Thankfully, there is a qualified team in place and oversight by qualified medical professionals.

She was discharged AMA from another hospital a week or so before she arrived at BCH ...she arrived at BCH in the middle of the night..in a blizzard...by ambulance.





Sent from my iPhone using Tapatalk

I realize she arrived in the ambulance. Even healthy people get sick now and then and need an ambulance. She was also transferred by an ambulance to her new facility in CT. Qualified team in place now? Considering it's the same team (Tufts medical center) that parents wanted her treated by, you must be joking. DCF now insists she be treated at Tufts (where her parents were treating her to begin with). If Dr. Korson gave her the wrong diagnosis, why would DCF insist she be treated at Tufts?

 

[annahanna]

They probably don't trust the DCF to do the right thing and release Justina.

That would not be a reason to cancel a Liberty Counsel / Pelletier family press conference. They have repeatedly expressed distrust for the MA DCF. That has never seemed to stop a press conference or protest in the past. As far as I can tell, there is no new agreement to return custody of Justina to the Pelletiers. The family’s attorney stated that the DCF attorneys want two weeks to review and respond to the Pelletier parents’ motion.

Linda may have been given some disturbing information about Justina's health.

My question as to why Linda was crying was actually intended to be rhetorical, but if we are going to guess, I have a lot of ideas.
Perhaps she is crying because the press did not show up for the advertised press conference.
Maybe Linda is crying because she realized that her attorney just contradicted himself by claiming DCF agreement to the motion and DCF needing time to respond to the motion in practically the same breath.
She may be crying because the meeting with the Tufts medical team did not go as well as has been portrayed. Perhaps Dr Korson has a limited role or no role in Justina’s care. Perhaps Tufts agrees with the Somatoform diagnosis. Possibly, the Tufts medical team has decided that she does not have Mito after all.
Your guess is as good as mine.

By the way, there is a picture of on Rev Mahoney's Twitter feed of Lou and Linda meeting with their attorney after the medical team meeting and before the picture on the courthouse steps. Linda does not look upset and is not crying in that picture. If she had just received disturbing news about Justina's health due to the deplorable conditions at BCH, that would be the likely photo to show her crying.

She has been untreated for a long time.....

Wow. Do you honestly believe that? Justina was inpatient from February 2013 until January 2014 at one of the best hospitals in Boston. (Scratch that, the world.) Her health was monitored closely and she would have been treated for any emergent condition. From January 2014 until her recent transfer to CT, she was at Wayside Youth and Family where her health was monitored by that facility as well as BCH doctors, and later by Tufts doctors.

You do realize that Boston Children’s Hospital is one of the most respected children’s hospitals in the world? US News and World Reports publishes a highly respected annual ranking of US hospitals. Here is a link to the pediatric hospital rankings: http://health.usnews.com/best-hospitals/pediatric-rankings Boston Children’s is rated #1 in the US in 7 of 10 categories. In the other 3 categories, they are ranked #2, #4, and #8. I don’t think that Tufts ranks in the top 50 in any single category. (Please correct me if I am wrong.) I do not point this out with any contempt for Tufts. My child sees a physician at Tufts that we like, respect, and value as a member of our child’s healthcare team.

Do you honestly believe that a world leader in pediatric healthcare would allow a child to lack for healthcare services within its own walls????

..... as well as being given psychiatric drugs. I know that I can't prove it, but that is what they give psych patients in psych wards.

Actually, the most common treatment for Somatoform disorders does not include psychiatric drugs. Psychotherapy, behavior modification, family therapy, and reduction in number of medical providers is the common prescription. Reduction of current medications through a careful weaning process is instituted. Addition of any medications is carefully weighed. Patients are medicated if their medical condition warrants it, but you need to keep in mind that the goal of somatoform treatment is to overcome the patient’s perception of illness and replace it with wellness. Heavily medicating with psychiatric drugs is contrary to that goal.

Her eyes in some of the pictures over the months look like she was medicated, also her slurred speech.

Someone else has addressed your slurred speech comment, but really???? Her slurred speech was noted upon her arrival at the BCH ER. Her mother informed the physicians at intake that her speech issues (slurring words and gibberish language) had begun 6 to 8 weeks before arrival at BCH. Her eldest sister also has an issue with slurring her words.