DC - Justina gets standing ovation from Congress

[CathyinTexas]

Jennifer Pellitier said that reporter was wrong and that there are no conditions for Justina's return home.

 

[i.b.nora]

Yes, there is a disclaimer posted on the miracle page regarding that statement in the video news report.

 

[PoirotryInMotion]

This 2-page May 5, 2014 report by Susan Donaldson James (ABC) also outlined the conditions for Justina's return home: it included input from her Tufts doctor and Boston Children's, included the stay in the Susan Wayne Center prior to her return home, as well as treatment for both physical and psychiatric issues. It also included family counseling. This was outlined in a letter to the MA House of Reps. Mom can disclaim, but this apparently was the agreed-upon, court-mandated path to her return.

Justina Pelletier, the sick teen who for the past year has been in state custody under psychiatric care at Boston Children's Hospital, will be moved to a therapeutic facility in Connecticut under a plan to reunite her with her family, according to the Massachusetts Department of Health and Human Services.

[...]

For more than a year, a Boston judge sided with Boston Children's, which was treating the teen for somataform disorder, a psychiatric condition that causes a person to experience physical pain for which no known medical explanation can be found.

But in March, the court ordered a new treatment plan that includes Justina's former doctor, Mark Korson of Tufts Medical Center, to create a new treatment plan for "persistent and severe somatic symptom disorder," a condition that acknowledges physical as well as psychiatric illness.

Starting next week, the teen will be moved to the JRI Susan Wayne Center for Excellence, a therapeutic education provider in Thompson, Conn., HHS secretary John Polanowicz wrote in a May 5 letter to the Massachusetts House of Representatives obtained by ABCNews.com.

"We are confident that we have found the right pathway for Justina to return home as soon as possible so she can continue her strong recovery in Connecticut," Polanowicz wrote. "This is an important step forward in an extremely complex situation. We all want Justina to return soon, and this plan provides a road map to make this happen."

Pelletier may return home once her family meets these conditions: They must attend weekly visits at the Susan Wayne Center, follow the treatment plan outlined by Tufts Medical Center, participate in family therapy and continue to review her progress with DCF.

<snipped>
http://abcnews.go.com/Health/justina-pelletier-home-conn-year-mass-psych-hospital/story?id=23594343

 

[sweetmom]

If anyone is still reading this post you may want to know that:
Justina's Law is stuck in a Congressional committee with slim to no chance of ever becoming an actual law: largely because it's based on BS and "solves" a non-existent problem.

They sent out more than 1,000 (!!) invitations to Justina's Sparkle party. Fewer than 100 people attended and almost none from her hometown.

Poor Justina is now back in the hospital...this time Yale New Haven -- but the family is already talking about moving her elsewhere. (St. Elsewhere, perhaps?) See their A Miracle For Justina facebook page for more...

Will post more updates later.

 

[wendybtn]

This child has an accepted medical condition of mitochondrial disorder. She is not the only person in the world with it. She was taken to the ER in the winter of 2012-2013 for flu treatment. Like most chronically ill people, regular illnesses cause much more sickness, harm than to a regular person. Because her regular MD specialist was out-of-town, she was sent elsewhere and kept by the government away from her home, parents,school and friends for approx. 15-18 months. And people on here are blaming her parents and Michele Bachman for ???? Wow. Some people have no clue how the government can ruin a family, a business, a life for no real reason. Hope your lives stay blessed and never crossed by a government bureaucracy trying to "help" you.

 

[sweetmom]

This child has an accepted medical condition of mitochondrial disorder. She is not the only person in the world with it. She was taken to the ER in the winter of 2012-2013 for flu treatment. Like most chronically ill people, regular illnesses cause much more sickness, harm than to a regular person. Because her regular MD specialist was out-of-town, she was sent elsewhere and kept by the government away from her home, parents,school and friends for approx. 15-18 months. And people on here are blaming her parents and Michele Bachman for ???? Wow. Some people have no clue how the government can ruin a family, a business, a life for no real reason. Hope your lives stay blessed and never crossed by a government bureaucracy trying to "help" you.

Oh my. Where to begin.
1. Dr. Korson has been quoted in the Globe saying it was a "working" diagnosis of mito: not a definite one. And he did no muscle biopsy, which is the best test to determine mito. So her own doctor did not say it was "an accepted diagnosis."

. Nowhere in her medical records from CT Children's Hospital, where she was taken in 2012, does it say she had flu. In fact, CCH discharged her in part because they could not determine what she had.

3. Dr. Korson then suggested to the Pelletiers that Justina be seen by Dr. Flores, formerly of Tufts but now at Boston Children's Hospital. Nowhere has it been reported that Dr. Korson told the family to hire an ambulance and travel from CT to Boston in a snowstorm on a weekend night to do that: it seems reasonable to assume he meant: Call Flores and make an appointment. The family did not call BCH to see if Flores was even on duty or on call that night: he was neither. So they just arrived at the ER and were seen by the doc who was doing intake.
Justina was admitted to the neurology floor and monitored for about 10 weeks; only then was she moved to Bader 5, the psychiatric floor. And that was in part because her parents were behaving very very unwisely, frightening other patients and parents. See the judge's full ruling.
5. By June 2012, BCH was ready to release her to a stepdown facility, as the first step to returning home, which finally happened this spring. But her parents caused such a fuss that no stepdown facility would take her FOR A WHOLE YEAR till they finally agreed to the treatment plan. They could have done that a year earlier and gotten Justina home then. But they refused to budge.

The government was not the culprit here. The family was.

 

[sweetmom]

I find it troubling that as media attention to the Pelletiers has dropped precipitously (after all, once Justina returned home, the basic story was over) and since very little is being reported about Justina's Law and since their Sparkle fundraising party drew very little support and not much press, that all of a sudden Justina, whom the family said only recently was doing just fine at home, is suddenly back in the hospital. And even that doesn't seem to be the subject of any news stories...if that was their hope, it's not happening. In any case, I hope Justina is feeling better and getting good professional help.

 

[sweetmom]

oh my. Where to begin.
1. Dr. Korson has been quoted in the globe saying it was a "working" diagnosis of mito: Not a definite one. And he did no muscle biopsy, which is the best test to determine mito. So her own doctor did not say it was "an accepted diagnosis."

. Nowhere in her medical records from ct children's hospital, where she was taken in 2012, does it say she had flu. In fact, cch discharged her in part because they could not determine what she had.

3. Dr. Korson then suggested to the pelletiers that justina be seen by dr. Flores, formerly of tufts but now at boston children's hospital. Nowhere has it been reported that dr. Korson told the family to hire an ambulance and travel from ct to boston in a snowstorm on a weekend night to do that: It seems reasonable to assume he meant: Call flores and make an appointment. The family did not call bch to see if flores was even on duty or on call that night: He was neither. So they just arrived at the er and were seen by the doc who was doing intake.
Justina was admitted to the neurology floor and monitored for about 10 weeks; only then was she moved to bader 5, the psychiatric floor. And that was in part because her parents were behaving very very unwisely, frightening other patients and parents. See the judge's full ruling.
5. By june 2012, bch was ready to release her to a stepdown facility, as the first step to returning home, which finally happened this spring. But her parents caused such a fuss that no stepdown facility would take her for a whole year till they finally agreed to the treatment plan. They could have done that a year earlier and gotten justina home then. But they refused to budge.

The government was not the culprit here. The family was.

sorry, meant to type by june 2013, not 2012

 

[Morag]

How unfortunate. All summer long she seemed to be radiantly healthy, bouncing around in the pool, attending ball games, traveling to New York and to Boston, and being the sparkling guest at her sparkle party. And now that she has a chance to get back into her school routine, she falls ill again. I hope she has been getting the treatment she needs.

 

[sweetmom]

How unfortunate. All summer long she seemed to be radiantly healthy, bouncing around in the pool, attending ball games, traveling to New York and to Boston, and being the sparkling guest at her sparkle party. And now that she has a chance to get back into her school routine, she falls ill again. I hope she has been getting the treatment she needs.

Sure is hard to figure out exactly what is going on with Justina. Before the admission to BCH, she could barely walk, yet took part in the skating exhibition, which IMO must have put a serious physical (and emotional?) strain on her. Then the whole BCH circus happens and the family claims the hospital "paralyzed" her with experimental drugs (for which there is absolutely NO PROOF), yet as Morag points out, she attended shows, ballgames, played games in their pool, attended the sparkle party: all required plenty of energy. Also, if her legs were paralyzed, could she feel pain? THEN she went home, the wall-to-wall press coverage dwindled (and IMO, the flow of donations to the family likely dwindled too), and now, all of a sudden, she's very sick again, and the family seeks sympathy, press coverage and, IMO, an uptick in donations. Maybe I am too skeptical, but something smells fishy here, and it's not their inground pool at their half-million dollar home.

 

[wendybtn]

I don't live in <modsnip> or anywhere near there, but I have 4 kids, 3 teens, and everything that is wrong or right with them is not always related to their parents and most of them don't need a psychiatrist. I have not followed the case from lab test to muscle biopsy, but I do know kids are with killing-type parents all over America even when seen by CPS workers, and the gov't interference in this case appears extreme to people in flyover country, especially during flu season. I feel like I can seek any medical care for any of my children, get it, and not be treated as a criminal unless I am actually criminally harming my child.

 

[Donjeta]

JMO just because your kids' problems are not caused or exacerbated by their parents and because they don't need a psychiatrist doesn't mean that Justina's or some other child's couldn't be related to theirs. Justina was reportedly seeing a psychologist many years before she was taken into CPS custody.

We just don't know enough facts, usually. If/when the information we have about CPS cases comes to the media largely via the parents they may be very selective in what they choose to share.

 

[sweetmom]

I don't live in Demochusetts or anywhere near there, but I have 4 kids, 3 teens, and everything that is wrong or right with them is not always related to their parents and most of them don't need a psychiatrist. I have not followed the case from lab test to muscle biopsy, but I do know kids are with killing-type parents all over America even when seen by CPS workers, and the gov't interference in this case appears extreme to people in flyover country, especially during flu season. I feel like I can seek any medical care for any of my children, get it, and not be treated as a criminal unless I am actually criminally harming my child.

<modsnip>
"everything that is wrong or right with them is not always related to their parents and most of them don't need a psychiatrist"?? Does that mean some of it IS related to their parents and SOME of them DO need a psychiatrist??
OK, Snark aside, the only reason this case appears extreme to Midwesterners is because the vast majority of the reporting has been sloppy or downright wrong, as one paper and/or website after another piggybacked on the original reporting, almost all of which was based solelyon the parents' version of what happened, a version that has been shown over and over to be exaggerated, embellished or just plain false. The hospitals, doctors and CPS workers obeyed the law and did not speak for publication.
I am glad you can seek medical help for your kids without fear of being called a criminal and hope you never need it serious medical care for them. But the healthy relationship you have with your kids and doctors does not mean the Pelletier family has the same. IMO, they have slandered a very good hospital and doctors with no proof of malfeasance -- where are those lawsuits they kept threatening to file? -- just to make themselves appear to be in the right.

 

[forthelost]

They want to move her to another hospital again? That doesn't make me feel better about the situation.

 

[sweetmom]

They want to move her to another hospital again? That doesn't make me feel better about the situation.

Here is the latest info I can find, from the Pelletiers' A Miracle For Justina facebook page:

<modsnip>

Those were posted about a week ago. Nothing new since then, so I cannot say if Justina is still at Yale-NH or another hospital or home again. I think if she were home, they would say so, but then, that might cut down on the sought-for sympathy.

 

[forthelost]

Sounds suspiciously like doctor shopping to me.

 

[sweetmom]

Something new today on the Miracle for Justina website. A poster asked how she was doing. The website replied at around 4 pm:
<modsnip>

But the response does not tell us if she is still at Yale-NH or some other facility or at home, or exactly how they are working on getting her to feel better.

 

[i.b.nora]

Wasn't Justina left home alone with her Mother on the weekend of September 20th when her Father and sister Jennifer went to an anti transgender bathroom fundraiser in Minnesota? Just a thought. A week later she was shipped off to Yale hospital for pain?

I am finding the whole thing astoundingly peculiar. Isn't she still being treated by that Doctor at Tufts? Maybe they aren't allowed to cross the border between Connecticut and Massachusetts?

 

[sweetmom]

Wasn't Justina left home alone with her Mother on the weekend of September 20th when her Father and sister Jennifer went to an anti transgender bathroom fundraiser in Minnesota? Just a thought. A week later she was shipped off to Yale hospital for pain?

I am finding the whole thing astoundingly peculiar. Isn't she still being treated by that Doctor at Tufts? Maybe they aren't allowed to cross the border between Connecticut and Massachusetts?

It's looking like a pattern of convenience: When the parents need Justina to be sick, she's sick unto death. When they need her to be all sparkly/healthy, she's very, very sparkly/healthy. What her actual true un-manipulated health status is cannot be ascertained.
Yes, far as we know, she is still under the care of Dr. Korson at Tufts, but since they have turned Massachusetts into the wingnut equivalent of Dante's 9th circle of Hell, maybe they don't want to go there anymore.
And yes, Lou and Jennifer did go to speak at some Michele <mod snip> Bachmann <mod snip>conference, as there has rarely been a rightwing confab they didn't want to take part in. Which figures, because that is where nearly all of their support is coming from.

Have you noticed that sisters Jennifer and Jessica frequently post or are quoted about Justina, but sister Julia, the oldest (I think) almost never gets into the family act? Perhaps she harbors some doubts about the whole circus....

 

[Tugela]

So exactly what research was done on her and how and why did it make her paralyzed?

Apparently none. They only slowly weaned her off the complex cocktail of prescription drugs that had previously been fed to her.