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

[i.b.nora]

From Boston Globe Part Two:

Second of two parts

"Dr. Mark Korson, a soft-spoken, goateed native of Canada, prided himself on always keeping his cool, even when the highly stressed patients and families around him were losing theirs."

"Still, as the chief of metabolism at Tufts Medical Center sat in his cluttered third-floor office in Chinatown last April, his frustration began to boil over. Two months earlier, Korson had sent a 14-year-old patient, Justina Pelletier, to Boston Children’s Hospital to see a former colleague of his who had previously treated the girl for gastrointestinal problems. But things had rapidly gotten off track."

"In short order, a team of different Children’s doctors had disputed Korson’s working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse. This paved the way for the state child protection agency to intervene and strip the parents of custody on an emergency basis. From there, Justina, against her strong objections, was moved into the hospital’s locked psychiatric ward. Children’s and the state had ignored Korson’s requests to be included in a roundtable meeting to discuss Justina’s care."

"Staring at his desktop computer, ... Korson started to type. The 55-year-old doctor was getting daily calls from Justina’s parents, Linda and Lou Pelletier of West Hartford, Conn., each one more frantic than the last. Yet he felt he had no answers for them. “I am growing increasingly uncomfortable with the process at Children’s Hospital to evaluate Justina,” he wrote to the girl’s court-appointed attorney."

"Korson stressed that there were no empirical tests to support the hospital’s new psychiatric diagnosis for Justina of somatoform disorder, which describes a patient with symptoms that are real but for which no physical or biological explanation can be found. “It is a clinical hunch,” he wrote, “a best guess.”"


http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

He obviously shouldn't have sent her to Children's if he wanted to maintain control. And, I wonder about the existence of empirical evidence regarding his diagnosis of mitochrondrial disease. Too many people whose egos require them to be 'right'.

 

[i.b.nora]

Snipped:

From part 1 in the BG:

Quote:
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.

Thanks!!! There is so much material in those two really good articles.

 

[Zuri]

From Boston Globe Part Two:

Second of two parts

"Dr. Mark Korson, a soft-spoken, goateed native of Canada, prided himself on always keeping his cool, even when the highly stressed patients and families around him were losing theirs."

"Still, as the chief of metabolism at Tufts Medical Center sat in his cluttered third-floor office in Chinatown last April, his frustration began to boil over. Two months earlier, Korson had sent a 14-year-old patient, Justina Pelletier, to Boston Children’s Hospital to see a former colleague of his who had previously treated the girl for gastrointestinal problems. But things had rapidly gotten off track."

"In short order, a team of different Children’s doctors had disputed Korson’s working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse. This paved the way for the state child protection agency to intervene and strip the parents of custody on an emergency basis. From there, Justina, against her strong objections, was moved into the hospital’s locked psychiatric ward. Children’s and the state had ignored Korson’s requests to be included in a roundtable meeting to discuss Justina’s care."

"Staring at his desktop computer, ... Korson started to type. The 55-year-old doctor was getting daily calls from Justina’s parents, Linda and Lou Pelletier of West Hartford, Conn., each one more frantic than the last. Yet he felt he had no answers for them. “I am growing increasingly uncomfortable with the process at Children’s Hospital to evaluate Justina,” he wrote to the girl’s court-appointed attorney."

"Korson stressed that there were no empirical tests to support the hospital’s new psychiatric diagnosis for Justina of somatoform disorder, which describes a patient with symptoms that are real but for which no physical or biological explanation can be found. “It is a clinical hunch,” he wrote, “a best guess.”"


http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

He obviously shouldn't have sent her to Children's if he wanted to maintain control. And, I wonder about the existence of empirical evidence regarding his diagnosis of mitochrondrial disease. Too many people whose egos require them to be 'right'.

Exactly. The "doctor shopping" is considered a "sin" amongst medical docs which is absolutely ridiculous on one hand and on the other hand, "shopping" does not provide continuity of care. This reminds me of the saying " a little bit of knowledge can be dangerous" IYKWIM. The parents already have had one daughter with this diagnosis, so have gone through the experience of diagnosis and treatment with one. They probably know more than most doctors about the disease, and that, combined with a bad attitude will get them no where. JMO

 

[Karmady]

Being blunt here, I think it's clear that the hospital thinks there's some type of psychological disorder at play on the part of more than one family member and that they believe the nature of the disorder may be factitious. I wonder how the child is doing in the care of the hospital.

jmo

 

[i.b.nora]

Yes, I agree that is precisely what the hospital thinks. But, its a slow day at my house and its fun to see and explore all the other who, what, and whys.

 

[Zuri]

These doctors and parents need to breathe and set their egos aside. Stop the threats and the undermining on both sides. Justina is the one really losing in all of this and all these people, on both sides, should be ashamed of themselves. IMO

 

[Karmady]

Yes, I agree that is precisely what the hospital thinks. But, its a slow day at my house and its fun to see and explore all the other who, what, and whys.

A slow day three days before Christmas...I bow in your presence lol

 

[i.b.nora]

When i first read of this case, the sickly daughter/s and the hovering parents, earlier today, the very first person I thought of was Melissa Huckabey's daughter who was 'sickly'. All the while the mother is off poisoning and murdering other little kids. I wonder how Melissa's daughter is doing healthwise now that her mother is safely behind bars. That's all, that's the extent of my thinking on that matter.

 

[txsvicki]

How the heck can a somatoform disorder cause severe constipation that is not relieved by laxatives? I can see someone actually thinking they can't walk or that they have stomach aches, but when you gotta go, a person usually goes and couldn't really control that. Can't the psyche doctors figure out if the intestines really aren't working correctly and do a muscle biopsy?

 

[Zuri]

Without going into ANY detail, it can and does happen. Believe me. Please believe me.

 

[momrids6]

Mark Korson is highly regarded in the mitochondrial disease field.
Tufts is a nationally recognized facility.
The Children's Hospital in DC and The Cleveland Clinic have mitochondrial disease specialists.
NIH has ongoing research studies on children and adults with mito.

Justina has had testing for mito- she has had a muscle biopsy. Korson would not be providing treatment if she did not have mito. There is a serious shortage of experts in this field.

 

[SophieRose]

Here's a blog of a 16-year old Ohio girl who lost her battle against mitochondrial diease just a few weeks ago.

http://courageforcorynna.tumblr.com/

 

[momrids6]

Here's a blog of a 16-year old Ohio girl who lost her battle against mitochondrial diease just a few weeks ago.

http://courageforcorynna.tumblr.com/

Corynna suffered a severe decline; her upper body muscles and respiratory system were affected. Corynna received Hospice care at home and focused on enjoying every minute of her life that she could. Corynna and her family, like so many others, experienced physicians who were not educated about mitochondrial disease and didn’t know how to treat her. She was often referred to as “complex” and doctors saying, “we know something is wrong but don’t know what.”

Her wish was that one day others won’t have to experience this lack of knowledge or difficulty in diagnosing. Most of all,
she dreamed of a cure.

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8855871/k.440E/The_Corynna_Strawser_Research_Fund.htm

 

[Linda7NJ]

Corynna suffered a severe decline; her upper body muscles and respiratory system were affected. Corynna received Hospice care at home and focused on enjoying every minute of her life that she could. Corynna and her family, like so many others, experienced physicians who were not educated about mitochondrial disease and didn’t know how to treat her. She was often referred to as “complex” and doctors saying, “we know something is wrong but don’t know what.”

Her wish was that one day others won’t have to experience this lack of knowledge or difficulty in diagnosing. Most of all,
she dreamed of a cure.

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8855871/k.440E/The_Corynna_Strawser_Research_Fund.htm

Sent from my iPhone using Tapatalk 2

 

[Linda7NJ]

I can't even wrap my head around this case. Scary as hell!
I don't understand how this can happen. If anyone is battling it out, it should be the experts.
It's IMO ridiculous that this child was basically ripped out of her life and tossed in the "bin" for a year. It really does sound like One Flew Over...

IMO it does seems way more about egos than what's best for this child.


Sent from my iPhone using Tapatalk 2

 

[wendiesan]

These doctors and parents need to breathe and set their egos aside. Stop the threats and the undermining on both sides. Justina is the one really losing in all of this and all these people, on both sides, should be ashamed of themselves. IMO

I'd say you were right if the hospital cared about Justina, and if the parents were not exhausted with worry and fighting a David and Goliath battle against a bureaucracy that seems to be working only in its own self interests.

From the actions chronicled in the articles posted up-thread, I doubt that the hospital actually cares about anything more than its reputation and the amount it pays in medical malpractice insurance. Administrators have not taken Justina's wishes into consideration, or, frankly, her actual physical and mental health. Qui bono? Who is making money off this situation? CH is raking in at least $2,000 per day to keep a young girl away from her family, her friends, her education, and her hopes. The longer they isolate her, the more depressed she becomes, the longer they can keep their claws in her and keep that money flowing in. Justina was better off under the care her parents were giving her. The mother's requests ON ENTRY were proven to be valid, and were done MUCH later than they could have been simply because the staff at Childrens Hospital didn't like being told by someone without the title MD what needed to be done. It seems that the mother's being correct actually angered hospital staff rather than letting them see that she did have a good understanding of her child's needs. Furthermore, the hospital DID NOT follow protocol in treating the disease. For example, there still has been no round table discussion. CH appears to be afraid to even speak to a doctor from Tufts who is an acknowledged specialist in the field and who knows the history of the patient. CH also seems more intent on punishing the parents by hurting the daughter than in ending the daughter's pain.

I have to wonder just why CH is preventing one of their own doctors, a doctor familiar with the patient's history, from seeing her. Could it be that he would reveal the utter cruelty and stupidity of what the treatment flowing from a misdiagnosis? Or are they just intent on proving that their misdiagnosis is correct, even if it kills the patient? When an administrator claims that it could take years for improvement under her regime and that prolonged suffering if for the patient's good, something is very wrong. Or could it just be that someone being paid to accuse parents of abusing their children has to keep doing it in order to justify collecting her pay cheque?

Perhaps the parents are at fault for calling the hospital to account in a less than polite and respectful way. If they want to see their daughter again, the parents probably can't be seen as being anything but in awe of hospital bureaucrats. (However, hospitals are staffed by human beings and human beings make mistakes. It's just harder to prove their errors. I know because my father died as a result of hospital error.) The parents, who know the hospital is in error, will have to lie through their teeth, smile at their daughter's tormentors, and pretend to agree with that a misdiagnosis was actually correct, in order to rescue their daughter from Nurse Ratched and her minions from DCF.

Frankly, when people have been treated as badly as Justina's parents have been by hospital, DCF and courts alike, I think every administrator involved should be personally sued. Just where is it written that only deferential people love their children? That only people who suck up to a title should be dealt with honestly? That only pleasant people deserve to have children? DCF has declared the parents' home unfit without ever visiting, depending on the information from a hospital administrator with an ax to grind? A hospital administrator bases her professional opinion on the biased impressions of a mother by staff without ever seeing the patient or the parent? What is this if not just garbage in/garbage out?

And if Justina's mother was telling other parents that they were in danger of losing their children, was she that wrong? Five families in 18 months accused, that we know of. How many that we don't?

The mother was accused of making her daughter sick when she was present in the same room as the girl. That, in the opinion of the attending medical professional, the mother was making her daughter feel pains or say things in a way that had no basis in physical facts. As though, perhaps, the mother was making her daughter suffer simply by the way in which she was looked at her or by the tone she used. Funny, but I thought that accusations of witchcraft happened 17th Century Salem not in a contemporary Boston hospital or court of law.

This is all just my opinion, and I have my own biases. I feel terrible for Justina, and I hope that Judge Johnston will not be afraid to demand CH staff justify every single decision they have made, and apologize for their every mistake, which has cost this girl so much.

 

[jjenny]

Seems this hospital doesn't believe mitochondrial disease is real. But is the child getting any better being treated there for some other disease they think she has?
From the litte info we have, doesn't sound like it.

 

[CHICANA]

I think these people are a little "shifty". Of course I could be wrong.

This document makes it seem like they managed to forestall foreclosure on their home for 4 or 5 years?

http://www.connecticuthouseauctions.com/property/31-birch-hill-drive-west-hartford-ct/8673

And then there was the Chapter 13 filing on May 2, 2013 by Christopher H. McCormick representing Louis G. Pelletier and Linda D. Pelletier. It mentions the house as well as a couple of medical sounding type places.

I don't know if all that is normal or nefarious or somewhere in between.

I don't think it's shifty to try to forestall a foreclosure, they may have hoped their financial situation would improve. I think it's shifty when the court's impose gag orders.

http://www.bostonglobe.com/lifestyl...-for-months/5TGcy5X8IxQusdtXgRmXdK/story.html

 

[belimom]

I wonder what Justina said in court recently.

 

[momrids6]

I think these people are a little "shifty". Of course I could be wrong.

This document makes it seem like they managed to forestall foreclosure on their home for 4 or 5 years?

http://www.connecticuthouseauctions.com/property/31-birch-hill-drive-west-hartford-ct/8673

And then there was the Chapter 13 filing on May 2, 2013 by Christopher H. McCormick representing Louis G. Pelletier and Linda D. Pelletier. It mentions the house as well as a couple of medical sounding type places.

I don't know if all that is normal or nefarious or somewhere in between.

The cost of medical care for a child as affected as Justina is mindblowing.