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

[momrids6]

momribds6 -
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?

I certainly do believe he is capable of making mistakes. He is human. Doctors disagree with each other and make treatment decisions that another may not like. Many tests could be considered aggressive, and/or invasive- does not make them un-necessary nor unjustifiable. Same thing could be said about many surgeries. Hence the many forms one needs to sign.

Medicine is not an exact science

 

[Linda7NJ]

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

In my opinion...sometimes, like I believe the case to be, in this case...shining the spot light on...really pisses the powers that be off. They dig their heels in deeper....Egos tend to be huge.

Oftentimes it turns a bad situation into an enormously worse situation. Doctors, judges and Child protective services don't take kindly to being told how to do their job, or publicly critiqued, and have orders, treatment plans, etc ignored.


One analogy, even if you believe you didn't do anything wrong...it's never a good idea to talk smack to the police that just pulled you over. The officer is the one with the power, the gun and oftentimes the ego to make your life miserable.

IMO this could have been an ant hill turned into a mountain with each side piling it on and making it worse.



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[Linda7NJ]

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.

Yes, I've read it.

I still do not have enough information.


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[JeannaT]

In my opinion...sometimes, like I believe the case to be, in this case...shining the spot light on...really pisses the powers that be off. They dig their heels in deeper....Egos tend to be huge.

Oftentimes it turns a bad situation into an enormously worse situation. Doctors, judges and Child protective services don't take kindly to being told how to do their job, or publicly critiqued, and have orders, treatment plans, etc ignored.


One analogy, even if you believe you didn't do anything wrong...it's never a good idea to talk smack to the police that just pulled you over. The officer is the one with the power, the gun and oftentimes the ego to make your life miserable.

IMO this could have been an ant hill turned into a mountain with each side piling it on and making it worse.



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From what I can see, their heels were dug in COMPLETELY deep until the media took hold of his case.

Now, they've backed off.

 

[mikeysmommom]

Thanks, I'm aware of the Tuskegee experiment.

Leaving aside that this is not the south in the 1930s, that Children's is not an arm of the government, etc - my point is simply this: is there no room in your imagination for possibilities besides the most extreme one (ie, that Children's, the judge, DCF, all the doctors are involved in a large conspiracy to experiment on Justina)? Especially knowing that we have only half the story? Is it possible, to some of you, that something else is going on here besides the most nefarious possibilities?

Because yeah, i suppose the remote possibility exists that there is a big conspiracy going on to experiment on Justina, or to take away parental rights. Is it likely though? No. And is it rational to jump to the most extreme conclusions not only without evidence, but without the whole story? Again, no.

The children in FL was very recent. How do you know if this hospital is conducting tests with government approval. We have no idea which hospitals are involved until it gets exposed. I am not a conspiracy believer, but I do know that CPS/DCF are above the courts and judges.They tell the judges not the other way around.They have no government agency over seeing them, not even the FBI will interfere in their investigations even when children tell about naked pictures which is child *advertiser censored*. I hope you will never have to find out how horrible an agency they really are, I only did when we turned to them for help for 2 abused children.

 

[Linda7NJ]

If CPS were truly concerned about the medical care children receive they would first do something about the rate at which children, in their care, are medicated and over medicated at a horrifying rate.

Like it or not. The state makes a horrible parent.


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[animlzrule]

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.

:gthanks::goodpost:

 

[txsvicki]

I've been looking for the article that says Justina can't speak and is non verbal now, but can't find it. I have no idea what is really going on in this case, but found it a little odd that Justina's symptoms were exactly like the girl who was mentioned in the thread. The girl passed away, but I thought symptoms were different in different people with the disorder. Just keeping an open mind, because we don't know if Justina still has to have bowels flushed or even if she ever eats anything now. I'd like to know if she is ever observed to move around or talk to other kids when she thinks nurses don't watch, but they'll never give out that info to the media.

 

[i.b.nora]

I've been looking for information (proof) regarding Justina as competitive ice skater. So far, no success with that. I do know that one her sisters has been an ice skater and teaches the sport.

In searching for that, I ran across this in the Hartford Courant from early in January and found it interesting:

"Rob Graham, a spokesman for Boston Children's, said he could not comment on the Pelletiers' case. In an email, though, he said the hospital is required to report to the state any suspicions of child abuse. It's then up to the department of children and families as to who should have custody of the child.

According to documents connected to the case and made available by the Pelletiers, the hospital accused Justina's parents of interfering with their daughter's treatment to the extent of creating a "risk of death or serious physical injury."

"The parents object to this singular course of treatment and deny that such an emergency existed or exists to justify the exercise of jurisdiction," attorneys for the Pelletiers wrote.

Dr. Jurriaan Peters, a neurologist at Boston Children's, wrote that he was "concerned about the distribution of care across multiple providers in different facilities and across state lines, the number of invasive procedures Justina has been submitted to."

According to Peters in another report, Justina has had an exploratory laparotomy, an appendectomy, several colonoscopies and a cecostomy tube placement. The Pelletiers have denied that any of their daughter's symptoms are psychosomatic and have said physicians approved all medical procedures performed on Justina."

From:

West Hartford Parents Back In Court In Custody Dispute With MA Authorities
January 10, 2014|By WILLIAM WEIR, The Hartford Courant

http://articles.courant.com/2014-01...h-johnston-justina-pelletier-psychiatric-ward

 

[jjenny]

I haven't seen anything suggesting she is currently non-verbal.
She can talk from what has been reported.

 

[Gardenlady]

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.

As with most things in the law, there are exceptions to when a parent has "automatic access" to medical care and records. And I'm not sure how far their right to "waive her confidentiality" extends. And further, whether its legal or not, it's certainly ethically questionable as to whether or not they should be waiving a teen's confidentiality so that they can tell the world via TV, print, and radio.

So I'm not just talking the right of the parents to know. I'm talking about Justina's right to expect some sort of protection of her medical history from the *public*. The parents may or may not have a legal right to her information, but IMO the public does not - which might be a reason the judge implemented a gag order.

 

[Gardenlady]

I've been looking for information (proof) regarding Justina as competitive ice skater. So far, no success with that. I do know that one her sisters has been an ice skater and teaches the sport.

In searching for that, I ran across this in the Hartford Courant from early in January and found it interesting:

"Rob Graham, a spokesman for Boston Children's, said he could not comment on the Pelletiers' case. In an email, though, he said the hospital is required to report to the state any suspicions of child abuse. It's then up to the department of children and families as to who should have custody of the child.

According to documents connected to the case and made available by the Pelletiers, the hospital accused Justina's parents of interfering with their daughter's treatment to the extent of creating a "risk of death or serious physical injury."

"The parents object to this singular course of treatment and deny that such an emergency existed or exists to justify the exercise of jurisdiction," attorneys for the Pelletiers wrote.

Dr. Jurriaan Peters, a neurologist at Boston Children's, wrote that he was "concerned about the distribution of care across multiple providers in different facilities and across state lines, the number of invasive procedures Justina has been submitted to."

According to Peters in another report, Justina has had an exploratory laparotomy, an appendectomy, several colonoscopies and a cecostomy tube placement. The Pelletiers have denied that any of their daughter's symptoms are psychosomatic and have said physicians approved all medical procedures performed on Justina."

From:

West Hartford Parents Back In Court In Custody Dispute With MA Authorities
January 10, 2014|By WILLIAM WEIR, The Hartford Courant

http://articles.courant.com/2014-01...h-johnston-justina-pelletier-psychiatric-ward

That's a lot of quite invasive procedures. Especially questionable when combined with either doctor or diagnosis shopping, and/or not having the care unified under one or a team of doctors coordinating it.

 

[liljim]

that she cannot speak is a claim the father made and has then been repeated, he did not qualify it so who knows what it really means. just like the claim, from only the father that i know of, that she is paralyzed from the waist down.

i assume these are exaggerations and can understand why they would happen, but they are often being repeated as if they are fact.

THIS IS MY OPINION, THERE ARE MANY LIKE IT BUT THIS ONE IS MINE.

im not saying this is the case here, but...

given all that we have heard in this case i would be surprised if the following IS the case and we have not heard it yet, but it would make a lot of sense and make some of the hard to reconcile facts seem to fit together better.

i wonder if there is an eating disorder involved here, or if part of the somatoform diagnosis manifests itself in justina being unable to eat.

has anyone seen something like that as an actual diagnosis? i have not and i think i have read just about every article on this case that is out there, could have missed it tho.

the first thing that it would explain perfectly is her physical decline despite being given the correct diagnosis (this is my opinion and speculation, all of this is compleetely made up for the purposes of discussion). patients with eating disorders often do not accept their diagnosis and react strongly against it at first. even when the families are on board and the disorder is obvious the treatment sometimes takes years to work, and ultimately sometimes cannot really help.

the second thing that an eating disorder of some sort would explain is the facts that we know about the NG tube situation at children's. someone correct me if im wrong at any point in this narrrative;

she gets to children's and at some point the mother says she needs an NG tube, the hospital says she does not and feels she needs a chance to eat. at some point later, the hospital orders an NG tube for justina.

this is EXACTLY what would happen with a patient presenting with an eating disorder. at first the team would give the patient all the opportunities they can to eat solid food on their own. this is highly desirable and would be constantly worked towards.

failing that, they would give the patient the option of protein shakes and drinks, i forget the exact names but i recall them being similar to "ensure" type drinks. meal in a can type deal.

so the story of "this hospital says she doesnt need an NG tube when the mother knows she does! then they remove custody and give her an NG tube! they dont know what they are doing!!"... actually ends up being a very typical progression of treatment that they would do in many cases.

so that is just one type of thing that we dont know enough about but could be a very reasonable explanation for something that has been used to say that children's doesnt know what they are doing and is just being stubborn etc...

ok, go...

 

[liljim]

i will get you started;

"she probably isnt eating because she doesnt have the energy to do even that much, and with her stomach issues and bowel issues im sure eating is really uncomfortable and causes all sort of other problems/pains, especially because she isnt being treated for her mito disease!".

could be.

 

[Donjeta]

i will get you started;

"she probably isnt eating because she doesnt have the energy to do even that much, and with her stomach issues and bowel issues im sure eating is really uncomfortable and causes all sort of other problems/pains, especially because she isnt being treated for her mito disease!".

could be.

A NG tube wouldn't help that much with stomach and bowel issues, would it? It bypasses the mouth and the biting and the swallowing and the actual eating process but whatever goes through the NG tube goes to the stomach and the bowel just the same. I suppose a liquid diet might be more digestible than some of the normal stuff she could be eating but there may be extra discomfort associated with NG feeding that she wouldn't normally have.

 

[liljim]

A NG tube wouldn't help that much with stomach and bowel issues, would it? It bypasses the mouth and the biting and the swallowing and the actual eating process but whatever goes through the NG tube goes to the stomach and the bowel just the same. I suppose a liquid diet might be more digestible than some of the normal stuff she could be eating but there may be extra discomfort associated with NG feeding that she wouldn't normally have.

im assuming that a diet of that nature is easier to digest than a diet of solid food but i could be wrong. im not making a case for what you quote there, im acknowledging it as a likely rebuttal.

 

[jjenny]

That's a lot of quite invasive procedures. Especially questionable when combined with either doctor or diagnosis shopping, and/or not having the care unified under one or a team of doctors coordinating it.

Sometimes sick people need a lot of procedures. Justina had abdominal issues and chronic constipation.
She had a congenital band wrapped around her colon.
How is that her parents fault? Unless you think they are responsible for a congenital band wrapped around her colon?
"Doctors at Connecticut Children’s Medical Center in Hartford had removed her appendix as well as a long congenital band that they’d found wrapped around her colon. Still, her chronic constipation persisted. Despite taking powerful laxatives, Justina sometimes went more than a week between bowel movements."
http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

[CHICANA]

I have been fighting CPS in NJ and I know how they work the courts I have unfortunately seen them in action.When they are involved the Judge goes by what they say, even when evidence is presented showing they are failing the children ,the judge refuses to even look at it till CPS,DYFS or whatever initials they keep changing it to.If you are out spoken in being protective about the abuse of a loved one be it from an individual or a hospitals care as in this case they will use that against you.It is horrendous when a child tells you they are being abused and you hear them being verbally attacked and know they are receiving punishments for speaking out against the abuser who then lies and say it never happened when you were there and it was said right to you.CPS has an agenda and believe me when I say 99% of the time it has nothing to do with actual protection of the child! If thee parents are a danger to their child why aren't they facing neglect charges in court? It sure seems to me that they use gag orders to shut the parents up. After I went on a writing campaign to every elected official in my state and then had a tv show who wanted us to appear that CPS finally allowed the paternal family involved in family meetings and then they wanted us to sign confidentially forms which we refused to sign. They refused to start the meeting unless we signed it.we signed because we had no choice but the meetings were BS.4yrs later the kids are still living with abusers ! CPS is just like airport security and Dept. of Homeland Security all they are is A FALSE SENSE OF SECURITY AND SAFETY IMO! And if you dare question a supervisor or ask them to please do their job and protect your loved one ,they get all bent out of shape and attack you.

Amen. Never question a childless CPS worker, kiss butt and you might get/keep your kids. If CPS ever knocks on my door, I'll demand a search warrant. People don't know that they don't have to let them in, it's harder for them to make stuff up if you give them NOTHING to work with. I'd prefer to deal with the police than CPS. More checks and balances. When I went to court for my teenager, I wasn't allowed to speak ! I thought the judge would want the truth but I was NOT allowed to talk and every time I tried the judge would very sternly "advise" me not to talk until I had an attorney present. They let my daughter live with criminals and made threats regarding my 2 smaller children when I refused to sign what they wanted. Pure evil.

 

[Plombage]

I was born with a congenital lung malformation which eventually lead to the complete loss and removal of my right lung by the time I was 15. Over the next year I would be well for a few days then sick for a few weeks over and over again. My surgeon who was a world renowned pediatric surgeon told us he had now idea what was causing this to happen but if he couldn't figure it out he would find someone who could. After almost a year and a half of numerous medical procedure(weekly) and lots of doctors on both sides of the state line (MO/KS) he did figure it out. I was diagnosed with a rare complication that happens in less than 1% of people who loss a lung. My surgeon then did a medical procedure/surgery that saved my life which had only been done once a few weeks prior to mine. I will be 40 this July and their is still just the two of us in the world that have had it done.

I believe that having a surgeon that was honest about not knowing everything about medicine is what saved my life. Their is so much about the human body that is still unknown. I think some doctors forget this.

Oh I also had a mother who was very aggressive (in a good way) with my health.

 

[gitana1]

Wow. It's getting kind of testy in here. What's going on?

Thanks, I'm aware of the Tuskegee experiment.

Leaving aside that this is not the south in the 1930s, that Children's is not an arm of the government, etc - my point is simply this: is there no room in your imagination for possibilities besides the most extreme one (ie, that Children's, the judge, DCF, all the doctors are involved in a large conspiracy to experiment on Justina)? Especially knowing that we have only half the story? Is it possible, to some of you, that something else is going on here besides the most nefarious possibilities?

Because yeah, i suppose the remote possibility exists that there is a big conspiracy going on to experiment on Justina, or to take away parental rights. Is it likely though? No. And is it rational to jump to the most extreme conclusions not only without evidence, but without the whole story? Again, no.

Yeah, there is zero evidence of any kind of a grand conspiracy here, involving the government or BCH.

Patricia Wen (globepatty) is a journalist and one of the writers of the initial Globe articles about the Pelletiers and Boston Children's. What i find appaling, actually, are some of the replies to her recent tweets about the hearing and about the case. I guess I just come from another time, another place.

I thought the following tweet was interesting since i hadn't previously seen anything about this possibility in this most recent hearing, that the judge was open to returning the child to the parents (with conditions). That was not reported or leaked by any of the vultures that have gathered around the Pelletiers.

From:
https://mobile.twitter.com/globepatty
"Source briefed on case baffled why parents of #justinapelletier so upset when judge in court Mon. said open to returning teen to them in CT"
9:17am - 26 Feb 14

Also, why did the mother wait to collapse outside the courtroom and not inside? Just wondering.

That strikes me too. Seems a hysterical response from people who want to create drama. I work with people in horrible custody cases daily. I have never had one collapse at all, especially not until outside the courtroom, conveniently in front of reporters.

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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Well, gag orders are much more common in juvenile criminal cases than in family court. I haven't seen any at all.

The gag order is suspect here because the family is going up against two powerful institutions and the only weapon they may have is being able to disseminate information about the case to a public who can demand transparency and put pressure on the government to do the right thing. Of course, that's not totally fair to CPS and BCH, who cannot reveal info., but when we are talking about powerful institutions taking children from families, I have a problem with an order gagging the family. This issue involves a fundamental, constitutional right to parent one's children and parents going up against the government should never be forced to remain silent. That's a big problem in my opinion. A huge imbalance of power.

That and the refusal to speak with the child's doctor or to allow him to be involved in the case, really raises alarm bells for me and has caused me to believe this is about ego and power and not necessarily the best interest of the child. Plus, she has not apparently improved.

In my opinion...sometimes, like I believe the case to be, in this case...shining the spot light on...really pisses the powers that be off. They dig their heels in deeper....Egos tend to be huge.

Oftentimes it turns a bad situation into an enormously worse situation. Doctors, judges and Child protective services don't take kindly to being told how to do their job, or publicly critiqued, and have orders, treatment plans, etc ignored.

One analogy, even if you believe you didn't do anything wrong...it's never a good idea to talk smack to the police that just pulled you over. The officer is the one with the power, the gun and oftentimes the ego to make your life miserable.

IMO this could have been an ant hill turned into a mountain with each side piling it on and making it worse.


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I really agree with this post. I think you are spot on.