DC - Justina gets standing ovation from Congress

[annahanna]

Did some further checking: the young woman is 17 and as of July (at least) she was in CHOP. The family lives in New Jersey. I do not see her mother's post on the Miracle site today, but others from yesterday are still there. Perhaps hers was deleted because it hinted that Justina is now at CHOP and the family does not want anyone else to reveal that before they do?

You were correct. The same woman just posted that she was at Children's Hospital Philadelphia.

 

[annahanna]

I am a little surprised that the transfer went through. Other than parental desire, there didn't really seem to be a valid reason to transfer her from one outstanding hospital to another. I hope that Children's Hospital Philadelphia is able to determine what is wrong with Justina and help her return to good health.

 

[sweetmom]

I am a little surprised that the transfer went through. Other than parental desire, there didn't really seem to be a valid reason to transfer her from one outstanding hospital to another. I hope that Children's Hospital Philadelphia is able to determine what is wrong with Justina and help her return to good health.

Amen to that.

 

[i.b.nora]

Further evidence that Justina has gone to Philadelphia is the video made by a friend of Justina's recently posted at the miracle page. Or, seen here:
https://m.youtube.com/watch?feature=youtu.be&v=cHtCURnUQqs

 

[sweetmom]

Further evidence that Justina has gone to Philadelphia is the video made by a friend of Justina's recently posted at the miracle page. Or, seen here:
https://m.youtube.com/watch?feature=youtu.be&v=cHtCURnUQqs

This movie is very touching and very well done. It's wonderful to see Justina acting pretty much like a normal teenager, and she is lucky to have such a good friend. Let's hope the doctors at CHOP finally figure out exactly what her health problems are, and offer a way to improve them.

Re: the recent post by the mother of the girl with Batten's Disease....it's no longer on the Miracle site.
That girl is likely on the neurological floor, as Batten's is a degenerative brain disease. Does that suggest the mom met Linda Pelletier on the neurology floor, and does that mean Justina is being treated for a neurological condition? Is mitochondrial disease considered a neurological condition? Just wondering.....

 

[Hiandmighty]

Well, somatoform disorder would be treated on a neurological floor, would it not?

 

[jjenny]

Well, somatoform disorder would be treated on a neurological floor, would it not?

She wouldn't have been send to CHOP to treat a somatoform disorder.
They don't specialize in it.

 

[sweetmom]

She wouldn't have been send to CHOP to treat a somatoform disorder.
They don't specialize in it.

But they do have a department that specializes in treating pediatric behavioral disorders.
And one for bowel motility disorders.
Also a clinic for treating encopresis, the psychologically driven refusal to have bowel movements from fear of pain or from stress issues with parents, which can lead to such poor bowel muscle tone that having movements becomes impossible. That disorder may well have been what led to Justina needing a cecostomy, IMO.

 

[annahanna]

<snipped>

Re: the recent post by the mother of the girl with Batten's Disease....it's no longer on the Miracle site.
That girl is likely on the neurological floor, as Batten's is a degenerative brain disease. Does that suggest the mom met Linda Pelletier on the neurology floor, and does that mean Justina is being treated for a neurological condition? Is mitochondrial disease considered a neurological condition? Just wondering.....

It is common for Mito patients to be treated in the neurology unit at various hospitals. The Mito program is under the Neuro department at BCH. There is a statement on CHOP's website that ongoing care of Mitochondrial Disease patients is handled by the child's pediatrician and neurologist.

I don't think this should be taken as a confirmation that she is being treated for Mito though. Her inability to walk (although she appears to move her legs at will) and some of her other symptoms would also be handled in the neuro ward.

 

[annahanna]

She wouldn't have been send to CHOP to treat a somatoform disorder.
They don't specialize in it.

Based on the size and scope of the psychiatric department at CHOP, it actually would make MORE sense to me if she was transferred due to continuing concerns about a psychiatric or psychological basis for Justina's symptoms rather then a belief in the "Mito" diagnosis. Yale New Haven has a well respected Mitochondrial Disease program that could handle Justina's care if that is the diagnosis. While they also have an excellent in-patient mental health service, Justina has aged out of the pediatric program and would have been treated as an adult. At CHOP, she would be treated as a pediatric patient.

The idea that Boston Children's Hospital "specialized" in Somataform disorders is and was totally false. That came from multiple statements by the Pelletier family, not any basis in fact. Somataform or Somatic Symptom Disorder diagnoses are routinely treated by general psychologists in routine practice. These type of diagnoses do not need a specific sub specialist. It is true that Dr Simone Bujoreanu wrote a couple of articles about Somataform. It is also true that she wrote articles about other psychological topics.

You are correct that CHOP does not specialize in Somataform - any more then BCH does. However they do treat large numbers of patients with Somataform and related disorders. CHOP has an extensive Psychiatric and Behavioral Sciences department filled with clinicians that publish articles about a wide range of behavioral health topics. They have nearly twice the number of psych clinicians then Boston Children's does.

The reality is that we do not know the current diagnosis or what Justina is actually being treated for this time. We have only opinions based on limited amounts of information that the family has put forward. Information that is highly edited and, taken as a whole, does not add up for the majority of parents of children with chronic illnesses. We are hearing only their version of the story. Normally, I would not care and would not comment. However, in this case, my child was subjected to the increased security required at BCH due to the parents' behavior. My child's care was impacted by the protests, the media attention, and the negative stigma that the Pelletiers tried to spread across Boston Children's Hospital. Many unrelated patients have been harmed by their actions and behavior. The Pelletier family has effectively destroyed careers for clinicians that other patients depended on - Mark Korson and Simone Bujoreanu to name just two.

MOO

 

[sweetmom]

Based on the size and scope of the psychiatric department at CHOP, it actually would make MORE sense to me if she was transferred due to continuing concerns about a psychiatric or psychological basis for Justina's symptoms rather then a belief in the "Mito" diagnosis. Yale New Haven has a well respected Mitochondrial Disease program that could handle Justina's care if that is the diagnosis. While they also have an excellent in-patient mental health service, Justina has aged out of the pediatric program and would have been treated as an adult. At CHOP, she would be treated as a pediatric patient.

The idea that Boston Children's Hospital "specialized" in Somataform disorders is and was totally false. That came from multiple statements by the Pelletier family, not any basis in fact. Somataform or Somatic Symptom Disorder diagnoses are routinely treated by general psychologists in routine practice. These type of diagnoses do not need a specific sub specialist. It is true that Dr Simone Bujoreanu wrote a couple of articles about Somataform. It is also true that she wrote articles about other psychological topics.

You are correct that CHOP does not specialize in Somataform - any more then BCH does. However they do treat large numbers of patients with Somataform and related disorders. CHOP has an extensive Psychiatric and Behavioral Sciences department filled with clinicians that publish articles about a wide range of behavioral health topics. They have nearly twice the number of psych clinicians then Boston Children's does.

The reality is that we do not know the current diagnosis or what Justina is actually being treated for this time. We have only opinions based on limited amounts of information that the family has put forward. Information that is highly edited and, taken as a whole, does not add up for the majority of parents of children with chronic illnesses. We are hearing only their version of the story. Normally, I would not care and would not comment. However, in this case, my child was subjected to the increased security required at BCH due to the parents' behavior. My child's care was impacted by the protests, the media attention, and the negative stigma that the Pelletiers tried to spread across Boston Children's Hospital. Many unrelated patients have been harmed by their actions and behavior. The Pelletier family has effectively destroyed careers for clinicians that other patients depended on - Mark Korson and Simone Bujoreanu to name just two.

MOO

Pointing out that the Pelletiers' hysterical and IMO unfounded charges against BCH and its staff did actual harm to other patients is very, very important. We can add the hacking of the BCH message board for parents of patients, which inconvenienced many of them. And IMO, the brouhaha may have frightened certain families from taking their children to BCH or other hospitals, thereby harming their health, all based on false information. Add to that, IMO, the possibility that donations to the family may have been misspent on debts unrelated to "freeing" Justina, and you have a very serious situation that begs for investigative reporting.

 

[octobermoon]

There is a new article about Justina in the Boston Globe but I can't read it, used up all my free views this month. Can someone tell me the gist of the article? TIA

 

[jjenny]

There is a new article about Justina in the Boston Globe but I can't read it, used up all my free views this month. Can someone tell me the gist of the article? TIA

It says Justina was hospitalized for acute GI distress symptoms in late September. But testing didn't find the reason, so she has been transferred to CHOP for additional testing. Also, Dr. Korson was interviewed in the article and says he was told by Justina's medical stuff at Yale that her lower colon is not working properly.

 

[octobermoon]

It says Justina was hospitalized for acute GI distress symptoms in late September. But testing didn't find the reason, so she has been transferred to CHOP for additional testing. Also, Dr. Korson was interviewed in the article and says he was told by Justina's medical stuff at Yale that her lower colon is not working properly.

Thank you

 

[i.b.nora]

A short version of the Boston Globe article has been published by The Hartford Courant here:

http://www.courant.com/community/we...-pelletier-bostonglobecom-20141207-story.html

snips

Lou said Justina began suffering symptoms that prompted her admission to Yale-New Haven Children’s Hospital in late September. "He said testing and treatment there failed to address her ailments."​

"On Monday, her parents had Justina transferred to the Children’s Hospital of Philadelphia for additional tests. Her father said Justina, who ate robustly when she returned home six months ago, has been fed intravenously in recent weeks."​

And, the Boston Globe article is here:

http://www.bostonglobe.com/metro/20...a-pelletier/u4JXzmt5YsmWhYk95za2aK/story.html

Long, good article.

A difficult return to hospital for Justina Pelletier
By Patricia Wen and Neil Swidey | Globe Staff December 7, 2014


snip

"Lou Pelletier maintains that his daughter suffers primarily from mitochondrial disorder, a rare metabolic condition that often affects multiple organs. The condition has become the target of controversy, with some doctors saying the disorder, while clearly affecting many patients, has turned into a catchall diagnosis overly applied to those with hard-to-explain symptoms.

Dr. Mark Korson, a specialist on mitochondrial disorder who had treated Justina at Tufts Medical Center, said the medical staff at Yale-New Haven had been giving him periodic updates on her case and asking for input. As the Globe reported in its two-part series on Justina’s case a year ago, Boston Children’s had been criticized for failing to involve Korson early on, despite his efforts to be included and his role in sending her there so she could be seen by her former Tufts gastroenterologist, who had moved to Children’s.

Korson, who received permission from Justina’s family to discuss her case with the Globe, said the Yale-New Haven medical staff told him they had done testing that indicated the teen’s lower colon was not working properly.

Korson left Tufts last month after the downtown Boston hospital eliminated his position and closed its metabolism clinic. He is joining a private educational initiative focused on metabolic disorders, including mitochondrial disease."​

Lots to chew on in this article. Sometimes Boston Globe articles show up at Boston dot com. This article is not there yet but may be there soon.

 

[Donjeta]

Korson, who received permission from Justina&#8217;s family to discuss her case with the Globe

Why are her health issues still discussed in the media? Why does anybody need to know what condition Justina's intestines are and where she's treated. Give the girl some privacy finally... Whatever is going on with her, it's not a public health issue. JMO.

What do the parents hope to gain from keeping her in the news?

 

[i.b.nora]

Boston Globe article also includes a link to this current story:

http://www.bostonglobe.com/metro/20...BWM/story.html?p1=Article_Related_Box_Article

Tufts shutters mitochondrial clinic
By Neil Swidey and Patricia Wen | GLOBE STAFF DECEMBER 07, 2014

Tufts Medical Center, whose chief of metabolism was involved in a highly contentious dispute with Boston Children&#8217;s Hospital staff over the diagnosis and treatment of a Connecticut teenager, Justina Pelletier, has shuttered its metabolism clinic, eliminating the position of its chief, Dr. Mark Korson, and sending more than 500 of his patients scrambling to find new care.

The hospital said that it had decided to reorganize its genetics and metabolism division in the pediatrics department to focus on genetics exclusively, and dropped Korson&#8217;s job as of Nov. 1. Many patients, who were given only about a month to find a new doctor in a field where providers are already in short supply, were sharply critical of the hospital&#8217;s surprise decision.

Much More ...

 

[sweetmom]

A short version of the Boston Globe article has been published by The Hartford Courant here:

http://www.courant.com/community/we...-pelletier-bostonglobecom-20141207-story.html




snips

Lou said Justina began suffering symptoms that prompted her admission to Yale-New Haven Children&#8217;s Hospital in late September. "He said testing and treatment there failed to address her ailments."​

"On Monday, her parents had Justina transferred to the Children&#8217;s Hospital of Philadelphia for additional tests. Her father said Justina, who ate robustly when she returned home six months ago, has been fed intravenously in recent weeks."​

And, the Boston Globe article is here:

http://www.bostonglobe.com/metro/20...a-pelletier/u4JXzmt5YsmWhYk95za2aK/story.html

Long, good article.

A difficult return to hospital for Justina Pelletier
By Patricia Wen and Neil Swidey | Globe Staff December 7, 2014


snip

"Lou Pelletier maintains that his daughter suffers primarily from mitochondrial disorder, a rare metabolic condition that often affects multiple organs. The condition has become the target of controversy, with some doctors saying the disorder, while clearly affecting many patients, has turned into a catchall diagnosis overly applied to those with hard-to-explain symptoms.

Dr. Mark Korson, a specialist on mitochondrial disorder who had treated Justina at Tufts Medical Center, said the medical staff at Yale-New Haven had been giving him periodic updates on her case and asking for input. As the Globe reported in its two-part series on Justina&#8217;s case a year ago, Boston Children&#8217;s had been criticized for failing to involve Korson early on, despite his efforts to be included and his role in sending her there so she could be seen by her former Tufts gastroenterologist, who had moved to Children&#8217;s.

Korson, who received permission from Justina&#8217;s family to discuss her case with the Globe, said the Yale-New Haven medical staff told him they had done testing that indicated the teen&#8217;s lower colon was not working properly.

Korson left Tufts last month after the downtown Boston hospital eliminated his position and closed its metabolism clinic. He is joining a private educational initiative focused on metabolic disorders, including mitochondrial disease."​

Lots to chew on in this article. Sometimes Boston Globe articles show up at Boston dot com. This article is not there yet but may be there soon.

A pretty good Globe article, but it still (inadvertently, IMO) reinforces the family's version because no one from the hospitals can speak frankly.
Naïve readers will take away from the article thatg what Lou says is true. IMO, he's fabricating it to gain sympathy, attention and money.
If the Pelletiers go to court, then IMO the whole story, both sides, will come out and that, IMO, is why they will keep talking about a lawsuit but never actually file one. Seems if they had proof of the malfeasance they keep referring to, they would have filed a suit last summer when the story was still hot.

Basic facts: Justina could not eat,swallow, speak or walk normally under her parents care when when they took her to Tufts, CT Children's Hospital and BCH. She has had the bowel motility issues for years and years, AND underwent surgery at Tufts.
After 16 months at BCH and the two rehab facilities, she could eat, speak, undergo PT and was well enough to attend ball games and plays in Boston. Once she went home in July, she was well enough to travel to Washington to speak to Congress about Justina's Law and attend a gala party in her honor.
BUT shortly after, within 10 weeks of being back with her parents, she was so ill that she was admitted to Yale-NH (which has a fine mitochondrial clinic) where they could not diagnose her (so, likely not mito disease). Now she's in CHOP.

IMO, there is a bad pattern here, and it shows that she falls apart when under her parents' care.

 

[sweetmom]

Why are her health issues still discussed in the media? Why does anybody need to know what condition Justina's intestines are and where she's treated. Give the girl some privacy finally... Whatever is going on with her, it's not a public health issue. JMO.

What do the parents hope to gain from keeping her in the news?

IMO, the parents are keeping the case in the news to gain sympathy, media and political attention and money.

 

[sweetmom]

No link to the Globe story on the Miracle site. Even though it quotes Lou a lot and does not rebut what he says, maybe they do not think the story is positive enough.