DC - Justina gets standing ovation from Congress

[sweetmom]

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

Sadly, it has never been clear whether Justina truly cannot walk or thinks she cannot (which is almost as bad) because the family keeps telling her she can't because the big bad hospital paralyzed her during secret scientific experiments. What a dreadful situation.

 

[jjenny]

Poor Justina: more bad news posted today on the Miracle for Justina site:


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This does not sound good at all. I pray that she is getting good professional care and that the entire family cooperates.

She has long standing GI issues. As was reported, at one point doctors debated whether to surgically remove parts of her GI tract, but put in port instead.

 

[sweetmom]

She has long standing GI issues. As was reported, at one point doctors debated whether to surgically remove parts of her GI tract, but put in port instead.

Yes, that is true. She has longstanding GI problems. And I recall some reporting that said one of the issues either Tufts or BCH had with the family was whether Linda Pelletier was competent at flushing out or keeping the port free of infection. I sure hope that is not what the problem is now.

 

[sweetmom]

She has long standing GI issues. As was reported, at one point doctors debated whether to surgically remove parts of her GI tract, but put in port instead.

Yes, that is true. She has longstanding GI problems. And I recall some reporting that said one of the issues either Tufts or BCH had with the family was whether Linda Pelletier was competent at flushing out or keeping the port free of infection. I sure hope that is not what the problem is now.

 

[i.b.nora]

The Hartford Courant article:

http://www.courant.com/community/we...pelletier-hospitalized-10-20141006-story.html

Justina Pelletier Hospitalized, 'In Serious Pain,' Spokesman Says
By Suzanne Carlson
October 6, 2014

"She was admitted to Yale-New Haven Hospital on Sept. 27 suffering from "serious pain" and gastrointestinal distress, according to a Facebook post by Rev. Patrick Mahoney of the Christian Defense Coalition, who has been acting as a spokesman for the Pelletier family.

Mahoney said Monday that Justina returned home to West Hartford Friday, but was re-admitted to Yale-New Haven Hospital around 2 a.m. Monday morning.

"She's having serious pain and serious GI issues, she was actually in Yale-New Haven a week ago for several days," Mahoney said.

Mahoney said Justina's parents, Lou and Linda Pelletier, are staying with her at the hospital, and her three sisters have been visiting when they're not at work.

Lou Pelletier did not respond to a request for comment."​

 

[sweetmom]

The Hartford Courant article:

http://www.courant.com/community/we...pelletier-hospitalized-10-20141006-story.html

Justina Pelletier Hospitalized, 'In Serious Pain,' Spokesman Says
By Suzanne Carlson
October 6, 2014

"She was admitted to Yale-New Haven Hospital on Sept. 27 suffering from "serious pain" and gastrointestinal distress, according to a Facebook post by Rev. Patrick Mahoney of the Christian Defense Coalition, who has been acting as a spokesman for the Pelletier family.

Mahoney said Monday that Justina returned home to West Hartford Friday, but was re-admitted to Yale-New Haven Hospital around 2 a.m. Monday morning.

"She's having serious pain and serious GI issues, she was actually in Yale-New Haven a week ago for several days," Mahoney said.

Mahoney said Justina's parents, Lou and Linda Pelletier, are staying with her at the hospital, and her three sisters have been visiting when they're not at work.

Lou Pelletier did not respond to a request for comment."​

It's pretty rare for Lou to turn down a chance to comment. Maybe for once, the family is content to let a good hospital do what it thinks needs to be done.
So far, this story in the local paper has drawn only one comment, and it's pretty negative:

Allowing these people control of the child's treatment is tantamount to child abuse.

Whatever is going on, I know we all hope Justina is getting good care and will get better.

 

[Donjeta]

The Pelletier family will release more details on Justina's condition "as soon as they have some concrete information," Mahoney said.

Why? Why does anybody need to know? Doesn't she have the right to any privacy?

"At no time did Boston Children's conduct research on the patient in question," said Rob Graham, spokesman for Boston Children's Hospital, in a written statement. "The allegations that research was conducted on the patient are baseless and patently false."

 

[Tricia]

Please stop with the political comments.

This is not the Political Pavilion.

Any more political comments and time outs will be handed out.

Please provide links if you posts information about who owes what to whom.

Thank you

 

[sweetmom]

this was just posted on the Miracle For Justina Facebook page:

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It contradicts the MSM reports posted here earlier quoting Mrs. Pelletier herself, who said the main reason they took Justina to the hospital...first to Connecticut Children's Hospital and then to Boston Children's Hospital...was that Justina could barely walk, was having trouble swallowing, was speaking in an incoherent way. So she was "like that," having major problems before being admitted to BCH. When she left BCH for the step-down facility in Connecticut, she could talk and was eating normally.

Here, for example, is the Boston Globe story of Dec 13, 2013:

They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn&#8217;t eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.
But now Justina&#8217;s speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death.

and this, from the same article:

She had been born prematurely and had struggled with learning difficulties in public school for years. Then, in early 2012, her parents persuaded the local school district to pay for Justina to attend an expensive private school for children with learning disabilities. Justina loved the school and formed close friendships. When her mounting fatigue made it too difficult for her to walk several hundred yards to the cafeteria, her friends took turns eating with her in a classroom.

From the family's own version of the story, she was having major health problems BEFORE being admitted to BCH.

 

[i.b.nora]

Justina Pelletier back in hospital, family says
By Cristina Corbin Published October 07, 2014 FoxNews.com

http://www.foxnews.com/health/2014/...ck-in-hospital-family-says/?intcmp=latestnews

"She's in a tremendous amount of pain, mostly in her GI area," Jennifer Pelletier told FoxNews.com. "They're trying to treat the pain and keep her comfortable."

"She was starting to return to normalcy and now this is the last place she wants to be," Pelletier said, though she noted that the medical staff at Yale New-Haven "has been great." She said doctors there have yet to make a diagnosis."​

My guess is the doctors there will never make a diagnosis.

 

[sweetmom]

Here is the latest from the Miracle for Justina website. No change in her condition, evidently:
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[sweetmom]

Here's am update -- but with no real news -- from the Miracle for Justina site. It's been about 3 weeks since she was hospitalized at Yale-New Haven. You'd think they would have a diagnosis by now....but no.

<modsnip>

 

[here]

http://www.m.webmd.com/a-to-z-guides/features/webmd-5-gastrointestinal-disorders?page=4

5. GI issues affect emotional and social health, not just physical.

MOO
From my experience pain medicine causes me GI issues.

 

[sweetmom]

http://www.m.webmd.com/a-to-z-guides/features/webmd-5-gastrointestinal-disorders?page=4

5. GI issues affect emotional and social health, not just physical.

MOO
From my experience pain medicine causes me GI issues.

Yes, they can do that. Nausea, constipation, other unpleasantness.
Considering that we do not know what meds Justina is on now, we can only hope they are not giving her the same weird cocktail of drugs (a blood-pressure raiser at the same time as a blood pressure-lowerer) she reportedly was taking before being admitted to BCH. Yale-NH is a good hospital and unlikely to be treating her without careful analysis.

 

[sweetmom]

This was just posted on the Miracle website.

<modsnip>

Wonder what "critical tests" refers to?

 

[PoirotryInMotion]

This was just posted on the Miracle website.
<modsnip>

Wonder what "critical tests" refers to?

No telling, but sure wish it'd include a muscle biopsy to definitively diagnose mitochondrial disease.

I find the #freejustina hashtag curiously and sadly ironic.

 

[Harmony 2]

Mod note: Comments from facebook can be paraphrased and linked but no copy/paste is allowed.

 

[sweetmom]

Today's Miracle site update asks for a day of prayer and fasting on Thursday because the results of her tests at Yale-New Haven are due Friday and somehow that might help. Sounds to me like the family is feeling desperate, IMO.

 

[forthelost]

None of this is making me feel like the parents were really just concerned about a medical condition.

 

[Hiandmighty]

The family seems to me :cow: to need a lot of attention.

I have never felt convinced justina has a medical condition.... When the parents "fell out" at one of the hearings-- well, that is what sealed it for me. So dramatic. So unnecessary...

My opinion...