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

[JeannaT]

My assumption has always been the gag order is there to protect Justina's medical privacy. Whether her parents realize it or not, whatever is going on with her is her private medical information. She doesn't deserve for it to be plastered, in depth, all over newspapers, broadcast on radio talk shows, etc, as has been done. I feel terrible for her! Like it or not, there will be folks in the future who will now have access to and knowledge about her medical matters via a quick google search - it could unfortunately affect her job prospects, etc, in the future.

I also suspect perhaps the judge may have wanted I avoid some of the activist groups coming in as we are seeing now.

Just my assumptions. You know what assumptions do, though, so take them for what they're worth lol. Just seems like those are the most likely reasons.


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As I understand it, a juvenile doesn't have the right to privacy where medical records are concerned - the parents have the automatic right to access to medical care and records. And as such they also have the right to waive her privacy to any entity they choose - I've had to sign over the right to access to medical records for my children for different reasons. For insurance, for other medical care, etc. I think parents have the right to discuss their child's medical condition with anyone they see fit, just as adults have that right for themselves.

It just smells fishy to me, is all. Especially considering the doctors at Tuft's are standing by their initial diagnosis. It would be hard to fault the parents for following the Tuft's doctor's advice considering the prestige of that hospital (as well as Childrens, too) and considering she was apparently doing better under the care of Tufts.

 

[liljim]

believe it or not she didn't skate off the ice from that picture we see her in and right into the ER, the couple of comments i have seen in articles make it clear she was in bad shape and had been for some time when she arrived at the ER at children's.

i can think of a few reasons why she would not have "fully recovered" in the last year but im sure they will be summarily dismissed so there really is no point.

i wonder if the doctors at tufts that filed a claim of neglect also stand by their "diagnosis" regarding that?

if we are going to discuss doctors having agendas is it completely impossible that dr. korson who is very much invested in mitochondrial disease might be aggressive in his diagnosis? this is even hinted at by him in the globe article where he discusses his methodology compared to other doctors/institutions (specifically children's).

we really have very limited information as to how well she was doing the year before she went to children's, and we definitely have a very limited picture of how she has been doing at children's.

but no, children's is corrupt/inept, DCF is corrupt/inept, the judge is corrupt/inept...

 

[kincaid]

We have absolutely no facts to back up your assertion that the parents lost custody due to seeking a second opinion. I would be willing to bet my home that there isn't a judge around who would allow such a thing to happen.

Half the story, and all that, etc.

We have absolutely no facts to back up your assertion that the parents lost custody due to seeking a second opinion. I would be willing to bet my home that there isn't a judge around who would allow such a thing to happen.

Half the story, and all that, etc.

Read the Boston Globe story. The whole issue centers around the family's refusal to accept the diagnosis of somataform disorder. If they had been allowed to transfer their child to a different hospital or back to Tuffs for another opinion- this wouldn't be happening. The doctors at Boston Children's took the parent's refusal to accept the diagnosis as medical child abuse, they brought in the social workers and the social workers deferred to the doctors who already decided there was abuse. The judge isn't getting independent information, the Boston Globe article says the social workers routinely defer to the medical doctors and the independent consultant the judge appointed was affiliated with Boston Children's.

When social workers get involved, they outline what the parents have to do to get the child back, if the parents do not comply, they are basically SOL. That's at the crux of the matter here. Social workers and their experts sided with the doctors at Boston Children's and mandated that the parents agree to the current diagnosis of somataform disorder and the current treatment plan. In cases like this the facts become secondary to the compliance of the parents. The social workers report back to the judge if the parents are cooperating. The judge wants to see the parents are doing what the social workers want and are on the path to reunification. These parents obviously aren't doing that- they don't agree with the plan.

Hopefully the judge will agree to transfer Justina's care to UMass and independent doctors can examine her, doctors that have not declared already that they do not believe in mitochondrial disease.

 

[liljim]

"Hopefully the judge will agree to transfer Justina's care to UMass and independent doctors can examine her, doctors that have not declared already that they do not believe in mitochondrial disease."

oooops, don't believe everything you read...

http://www.childrenshospital.org/centers-and-services/mitochondrial-program/overview

 

[kincaid]

"Hopefully the judge will agree to transfer Justina's care to UMass and independent doctors can examine her, doctors that have not declared already that they do not believe in mitochondrial disease."

oooops, don't believe everything you read...

http://www.childrenshospital.org/centers-and-services/mitochondrial-program/overview

Obviously their gastro that was previous at Tuffs believes in it, not that he was allowed to see or treat Justina.

 

[liljim]

Obviously their gastro that was previous at Tuffs believes in it, not that he was allowed to see or treat Justina.

i dont understand your reply, did you look at the link i provided?

 

[kincaid]

Don't think this was posted yet

Two Mass. reps ask DCF to release Justina Pelletier
Posted: Feb 26, 2014 2:23 PM PST
Updated: Feb 26, 2014 2:23 PM PST
(FOX25 / MyFoxBoston) Ashley Troutman - bio | email


BOSTON (MyFoxBoston.com) – Representative Marc Lombardo (R-Billerica) and Jim Lyons (R-Andover) are looking to have Justina Pelletier, the teen involved in a high profile custody case, released from DCF custody.

Lombardo and Lyons are circulating a Resolution of the House of Representatives, which asks DCF to start the process of releasing Pelletier to her parents, officials say.

"The self-stated goal of the Department of Children and Families is to strengthen the link between families. Removing a child from her family is reserved for only the most egregious circumstances where evidence of malicious intent, negligence or the blatant inability to care for the child is present. No such findings are present in this case," Lombardo said in a release.

"The Pelletier case is a dispute between conflicting medical opinions," Lyons said in a release. "In my opinion, the decision on which medical treatment to adopt should rest with the parents, not with DCF. The Department's heavy-handed, unjustified interference with the rights of these parents is an example of what is wrong with this agency."

The Resolution will be offered at the next Mass. House of Representatives session.



Read more: http://www.myfoxboston.com/story/24...cf-to-release-justina-pelletier#ixzz2uTPNS3uh

 

[kincaid]

i dont understand your reply, did you look at the link i provided?

Big hospital. Not all the doctors are going to be on the same page. Plus Children's apparently had different criteria. The Tuffs doc said in the Boston Globe article that it was a 'working' diagnosis. Not all the criteria was met.

Point is pretty much moot because from the get go no one at Children's treated Justina for mitochondrial disease.

I sympathize because I have fibromyalgia. Do you know how many doctors still to this day think fibro patents just need a good psychiatrist? Many do. Many doctors to do not believe in fibro so I have no problem believing that this poor child could have been locked in a psychiatric ward for a year because of some thick headed doctor who thought it was all in her head.

 

[liljim]

So then you believe that the doctors that treated Justina at Children's hold the position that Mitochondrial Disease does not exist? And you believe this solely because the father claimed it correct? Or do you have other evidence that they believe that?

 

[JeannaT]

After reading through all the Globe article that I could without subscribing, I'm more disheartened than I was before reading it. Who do these people think they ARE, exactly? How can you possibly tell a patient they can't seek a second opinion? ?? Talk about Nurse Ratchet.

Do these medical professionals not know that children almost always appear weaker when their mother is around? Everyone knows that - from Kindergarten teachers to cub scout leaders. Children are more whiney when mom is there.

If these two medical entities disagree over the care she has been given, and Children's thinks she got inappropriate care at Tufts, take that up with Tufts and not the parent who is just trying to get their child well.

Really, Children's case would have a lot more weight if the girl improved over her year of care with them. As it is, she's disabled and she wasn't a 15 months ago and their strategy has not worked.

 

[momrids6]

believe it or not she didn't skate off the ice from that picture we see her in and right into the ER, the couple of comments i have seen in articles make it clear she was in bad shape and had been for some time when she arrived at the ER at children's.

Decompensation with mito can happen very quickly, or at a slower pace. Recovery from decompensation is similar in nature. Mito is treated symptomatically.

i can think of a few reasons why she would not have "fully recovered" in the last year but im sure they will be summarily dismissed so there really is no point.

I can think of many reasons why she may have fully recovered. Mito is not a standalone illness that guarantees less than 100% recovery. If someone has cancer, or diabetes, there is also not a ceratinly of 100% recovery of every system.

if we are going to discuss doctors having agendas is it completely impossible that dr. korson who is very much invested in mitochondrial disease might be aggressive in his diagnosis? this is even hinted at by him in the globe article where he discusses his methodology compared to other doctors/institutions (specifically children's). Of course he is aggressive in his diagnosis- just as good cancer doctors are. It can mean the difference between life and death- as well as quality of life.

we really have very limited information as to how well she was doing the year before she went to children's, and we definitely have a very limited picture of how she has been doing at children's. Many say a "picture is worth a thousand words"

RSBM- my replies in red

 

[liljim]

IMO MOO JMO OMGIJMO

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION this is another of the great myths of this case...

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION children's did not file a claim of abuse simply because the parents asked for a second opinion.

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION this did not happen.

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION this girl is not paralyzed from the waist down nor is she unable to speak.

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION i guarantee it.

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION nobody at children's told this girl she was never going home.

IN MY OPINION AND WITH NO EXPERTISE OR INSIDE INFORMATION you can bank on it.

 

[momrids6]

IMO MOO JMO OMGIJMO

another of the great myths of this case...

that children's filed a claim of abuse because the parents simply asked for a second opinion.

did not happen.

this girl is not paralyzed from the waist down nor is she unable to speak.

i guarantee it.

nobody at children's told this girl she was never going home.

bank on it.

There is a verified insider program here....

 

[liljim]

momribds6 - my point was, regardless of the cause, she did not walk into children's fine, she was not fine at all for some time before ever arriving there. for whatever reason.

im going to skip the second point, as i said it will go nowhere.

regarding his diagnosis, you dont believe he is infallible do you? so its possible that he "lumped" this one together (his term) and got it wrong? and the treatments have been aggressive and invasive, so its possible someone else (as he readily admits) might not agree with his diagnosis and might find the treatments unjustifiable?

you "picture is worth a thousand words" comment - i have no idea what you intend it to mean, but i hope it isnt that we should consider in our judgment the actual pictures of her that have been circulated, beyond cursorily.

 

[liljim]

There is a verified insider program here....

you must have missed it, right at the start i made sure, in all caps no less, to point out that what would follow was my opinion.

maybe i should have added that i certainly dont claim any insider information or expertise.

i will do that on every post now, thanx for reminding how necessary that is around here.

 

[JeannaT]

momribds6 - my point was, regardless of the cause, she did not walk into children's fine, she was not fine at all for some time before ever arriving there. for whatever reason.

im going to skip the second point, as i said it will go nowhere.

regarding his diagnosis, you dont believe he is infallible do you? so its possible that he "lumped" this one together (his term) and got it wrong? and the treatments have been aggressive and invasive, so its possible someone else (as he readily admits) might not agree with his diagnosis and might find the treatments unjustifiable?

you "picture is worth a thousand words" comment - i have no idea what you intend it to mean, but i hope it isnt that we should consider in our judgment the actual pictures of her that have been circulated, beyond cursorily.

liljim, sometimes you have to step back and look at the total picture here. This is not a girl who appears mentally ill. This is a girl who has a long history of wanting to be in school, who has close friends, who enjoys school and is willing to and ready to be there even if she is ailing. There is no basis - that I can see - for a diagnosis of mental illness or any reason to believe she is sand bagging.

She is in a wheelchair and by all accounts, can't speak clearly. The hospital blames the mother for the child's inability to speak without significant stuttering and disfluency.

Her medical tests show a physical/mechanical inability to process waste in her colon.

Often when doctors don't understand what is going on they say things like "there is no medical reason for this to be happening", instead of "we haven't found the cause for why this is happening".

I love the medical field, and most practitioners - and if I had my life to live over again I think I'd choose to be an RN - but REALLY - there is an arrogance here that just makes my blood boil.

They don't know what's wrong with her and they haven't been able to successfully treat her. And now they've snatched her away from her loving family - who I agree, can act obnoxiously.

Like Fred Murray.

 

[Yoda]

So they aren't moving her now?
http://www.ctnow.com/health/connecticut/hc-justina-pelletier-update-20140226,0,3946128.story

 

[JeannaT]

So they aren't moving her now?
http://www.ctnow.com/health/connecticut/hc-justina-pelletier-update-20140226,0,3946128.story

Thank God for the power of the media. Had it not been for the media, this family would have been at the mercy of courts/medical facilities who are running amuck unchecked in this case, IMHO.

Sometimes you just have to shine the spotlight on something that is unjust, and those who are doing it will be forced to rethink.

 

[Linda7NJ]

I would be less upset about hearing half of the story if the family hadn't had a gag order slapped on them. That just seems like an absolute nightmare - they are fighting what they see as a gross injustice and they are ordered to shut up and take it.

Gag orders happen all the time in family court.
Gag orders are to "protect the children"....allegedly.

I can not chose a side in this case without way more information.


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[JeannaT]

Gag orders happen all the time in family court.
Gag orders are to "protect the children"....allegedly.

I can not chose a side in this case without way more information.


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Did you read the Boston Globe article on page 7 of this thread? It seems really fair, and balanced, and informative.

I think I'll go ahead and pay the subscription rate to read Part 2 of the article tomorrow.