Family battling Children’s Hospital to bring teen home for Christmas #2

[annahanna]

Qualified team in place now? Considering it's the same team (Tufts medical center) that parents wanted her treated by, you must be joking. DCF now insists she be treated at Tufts (where her parents were treating her to begin with). If Dr. Korson gave her the wrong diagnosis, why would DCF insist she be treated at Tufts?

You do not know that it is the same team that treated Justina previously or even if Dr Korson has any part in Justina's current care. It is curious that the parents or their spokesperson did not joyfully announce that Justina was back under Dr Korson's care since they have been waiting so long for that to happen.

The only information that the public knows is that a team of medical professional has been assembled at Tufts to collaborate on Justina's treatment. There has been no announcement of the members of the team, the specialties involved, the diagnoses, or the treatment itself. DCF needed to find one medical facility to coordinate the care for this child. (Since the relationship between the parents and BCH was toxic.) The simple fact that Tufts is coordinating care says nothing about the accuracy of any previous diagnosis.

 

[jaunty-girl]

Too soon for what? She could walk before she ended up in BCH, how is she in better shape now?

Links have been provided that state that her mother said that she was having difficulty with one leg and then as time progressed, it started to impact the second. This was before she was admitted to BCH.
She is in fact in a wheel chair and there is no way to know if that would have happened anyway, since according to her mother, it was getting worse.

If we are to believe that she has mito and she's getting zero treatment for mito as some seem to keep saying, why is she not hospitalized? It's one thing to speculate and entirely another to ignore information that's been provided. She isn't in a hospital and she hasn't been for a while. Furthermore she hasn't been readmitted to the hospital. It would seem whatever her condition, it's stabilized. So I have no idea if she has mito or somatoform but it would appear that whatever she's being treated for, is being addressed.

To keep asserting that she could walk before she was admitted to BCH is ridiculous, even her own mother said for some weeks before, her legs were getting worse. It's like making the argument that she was unable to walk and talk at all, while in her parents care, back when she was an infant.

 

[jjenny]

Links have been provided that state that her mother said that she was having difficulty with one leg and then as time progressed, it started to impact the second. This was before she was admitted to BCH.
She is in fact in a wheel chair and there is no way to know if that would have happened anyway, since according to her mother, it was getting worse.

If we are to believe that she has mito and she's getting zero treatment for mito as some seem to keep saying, why is she not hospitalized? It's one thing to speculate and entirely another to ignore information that's been provided. She isn't in a hospital and she hasn't been for a while. Furthermore she hasn't been readmitted to the hospital. It would seem whatever her condition, it's stabilized. So I have no idea if she has mito or somatoform but it would appear that whatever she's being treated for, is being addressed.

To keep asserting that she could walk before she was admitted to BCH is ridiculous, even her own mother said for some weeks before, her legs were getting worse. It's like making the argument that she was unable to walk and talk at all, while in her parents care, back when she was an infant.

What is ridiculous is claiming she couldn't walk when there is a video of her ice skating which is dated December of 2012.

 

[jjenny]

You do not know that it is the same team that treated Justina previously or even if Dr Korson has any part in Justina's current care. It is curious that the parents or their spokesperson did not joyfully announce that Justina was back under Dr Korson's care since they have been waiting so long for that to happen.

The only information that the public knows is that a team of medical professional has been assembled at Tufts to collaborate on Justina's treatment. There has been no announcement of the members of the team, the specialties involved, the diagnoses, or the treatment itself. DCF needed to find one medical facility to coordinate the care for this child. (Since the relationship between the parents and BCH was toxic.) The simple fact that Tufts is coordinating care says nothing about the accuracy of any previous diagnosis.

Well, actually I do, since it had been reported in msm that Dr. Korson is a key player of the medical team.

 

[CathyinTexas]

Both Connecticut and Massachusetts are in the top 10 states for children's health. It's almost laughable to think that they would deliberately permit a child to dwindle and die if they had the ability to save her. And her speech was slurred when she arrived, as is that of her sister who has mito. They didn't take this child's case on for any reason other than to help her. She has had years of perhaps poor care and treatment prior, but she has remained out of a hospital for nearly a year now- no surgeries, no urgent trips to the ER. This child is sick, but she's being helped now.

She has declined while in DCF care, and she was taken to the ER while at Framingham.

 

[CathyinTexas]

If she were unable to swallow, she would be hospitalized and fed via a tube and hydrated via IV. The fact that she is now in a non-hospital facility in CT means that is not a current issue. Please keep in mind that Justina's swallowing and walking difficulties were problems she had before the family took her to BCH, when she was a patient of Dr. Korson.

Her family (sister, parents) have said she was never in a wheel chair, but active and ice skating when she was them. Her friends said at times she was weak, and she would go into the hospital for a couple of days and be fine when she came out. She has Mito and that means she has low energy.

 

[CathyinTexas]

Good points, Morag. But aside from what the family has said, I do not believe that there has ever been an official diagnosis stating Justina's sister, or Justina, definitely does have mito.

They have symptoms that are similar and have been treated for mito in lieu of a more definitive diagnosis. As we know from Justina's story, the mito "vitamin cocktail" treatment did not end her problems with walking, swallowing, slurred speech, etc. That may be because, while they absolutely do have problems, mito may not be the cause. We cannot say for sure because none of us have seen their confidential medical records.

A muscle biopsy was taken from Jessica and sent off to two reliable labs in the U.S. and both confirmed Mito. That is why Dr. Korson "lumped" Justina based on Justina's symptoms and the genetic component.

 

[CathyinTexas]

No, she had trouble walking. Which is not the same as "couldn't walk."

She was weak from mito and possible residual effects of the flu, and in gut pain. But she could walk.

 

[Grammar]

You do not know that it is the same team that treated Justina previously or even if Dr Korson has any part in Justina's current care. It is curious that the parents or their spokesperson did not joyfully announce that Justina was back under Dr Korson's care since they have been waiting so long for that to happen.

The only information that the public knows is that a team of medical professional has been assembled at Tufts to collaborate on Justina's treatment. There has been no announcement of the members of the team, the specialties involved, the diagnoses, or the treatment itself. DCF needed to find one medical facility to coordinate the care for this child. (Since the relationship between the parents and BCH was toxic.) The simple fact that Tufts is coordinating care says nothing about the accuracy of any previous diagnosis.

Anytime a person is admitted to a hospital there is a team put in place to oversee their care. It isn't a matter of just the admitting doctor handling it all. When Justina was admitted in the past, multiple caregivers would have been involved in her care. They apparently agreed that mito was the cause of her ill health. The insurance provider agreed with it. Yet when she was seen at BCH, suddenly it's "discovered" that everyone who has been involved in her care previously is wrong and she has a psych problem, one that is diagnosed when a physical problem can't be found. The interesting thing, to me at least, is that many health problems that were once considered psych because a physical cause couldn't be found have since been reclassified as medical problems as medical research discovered the actual physical causes of the symptoms.

<modsnip> that the physicians in even the best hospitals can be wrong, right? <modsnip> that the best hospitals lure the more elite physicians, physicians who tend to be completely certain they are right, no matter how wrong they are? Physicians who have unimaginable egos yet who still put their pants on one leg at a time and who urinate and have stinky bowel movements just like the rest of us mere mortals.

 

[liljim]

A muscle biopsy was taken from Jessica and sent off to two reliable labs in the U.S. and both confirmed Mito.

this is incorrect.

 

[liljim]

Anytime a person is admitted to a hospital there is a team put in place to oversee their care. It isn't a matter of just the admitting doctor handling it all. When Justina was admitted in the past, multiple caregivers would have been involved in her care. They apparently agreed that mito was the cause of her ill health. The insurance provider agreed with it. Yet when she was seen at BCH, suddenly it's "discovered" that everyone who has been involved in her care previously is wrong and she has a psych problem, one that is diagnosed when a physical problem can't be found. The interesting thing, to me at least, is that many health problems that were once considered psych because a physical cause couldn't be found have since been reclassified as medical problems as medical research discovered the actual physical causes of the symptoms.

<modsnip> that the physicians in even the best hospitals can be wrong, right? <modsnip> that the best hospitals lure the more elite physicians, physicians who tend to be completely certain they are right, no matter how wrong they are? Physicians who have unimaginable egos yet who still put their pants on one leg at a time and who urinate and have stinky bowel movements just like the rest of us mere mortals.

where did you get the idea that everyone involved in her care prior was on board with the mito diagnosis? it is completely wrong. there was plenty of disagreement about her medical problems long before BCH ever got involved.

<modsnip>

 

[jaunty-girl]

What is ridiculous is claiming she couldn't walk when there is a video of her ice skating which is dated December of 2012.

Good thing I didn't claim she couldn't walk then. I'm not asserting my opinion as fact and I'm not making things up.
Please provide the link to the video, with the embedded date (in the video).

Well, actually I do, since it had been reported in msm that Dr. Korson is a key player of the medical team.

Please provide the link to the MSM article that states this implicitly.

You keep making assertions and stating things as fact and you don't back these statements up which is against the rules.

<modsnip>

 

[jaunty-girl]

She has declined while in DCF care, and she was taken to the ER while at Framingham.

I was unaware of this, can you provide a link? You need to provide links when you make statements of fact. I am very interested in reading about her supposed decline.

 

[jaunty-girl]

A muscle biopsy was taken from Jessica and sent off to two reliable labs in the U.S. and both confirmed Mito. That is why Dr. Korson "lumped" Justina based on Justina's symptoms and the genetic component.

The only article I can find about Jessica's diagnosis is this one.
http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

"Her older sister’s muscle biopsy had also suggested mito, which can run in families."

I can't find anything that says the sample was sent to two reliable labs that both confirmed Mito, can you provide a link to where you got this from?

 

[annahanna]

Well, actually I do, since it had been reported in msm that Dr. Korson is a key player of the medical team.

Please provide a link to a msm citation that states that Dr Korson is a "key player" in the newly developed Tufts Medical Center care plan.

The "A Miracle For Justina" Facebook page - run by Jennifer Pelletier - stated Just last week in a post by Jennifer that the family had not yet informed of the details of the Tufts plan. The parents met with the Tufts Medical team for the first time on 5/30/14. They would have learned of the make up of the team at that time. To my knowledge, there have been no "msm" articles about the Justina Pelletier case on or after that date.

 

[annahanna]

What is ridiculous is claiming she couldn't walk when there is a video of her ice skating which is dated December of 2012.

I'm curious. What is the exact date on that video? Is your assertion that it is a dated video based on an embedded date stamp or claims made by the family during interviews that she could ice skate 6 weeks before admission to BCH?

 

[Harmony 2]

Mod note: Thread is open but please be sure to:

* link when making statements of fact
* stay on the topic of the thread
* keep politics out of the discussion as we have a designated area for that topic

Please tone down the snark and personalized posts. Those type of posts make it uncomfortable to come in here to read and they are unnecessary. Please discuss in a civil manner. If you come across an offensive post click the alert triangle and do not respond.

bumping up my mod notes.. please adhere to the guidelines

 

[annahanna]

Anytime a person is admitted to a hospital there is a team put in place to oversee their care. It isn't a matter of just the admitting doctor handling it all. When Justina was admitted in the past, multiple caregivers would have been involved in her care. They apparently agreed that mito was the cause of her ill health. The insurance provider agreed with it. Yet when she was seen at BCH, suddenly it's "discovered" that everyone who has been involved in her care previously is wrong and she has a psych problem, one that is diagnosed when a physical problem can't be found. The interesting thing, to me at least, is that many health problems that were once considered psych because a physical cause couldn't be found have since been reclassified as medical problems as medical research discovered the actual physical causes of the symptoms.

<modsnip> that the physicians in even the best hospitals can be wrong, right? <modsnip> that the best hospitals lure the more elite physicians, physicians who tend to be completely certain they are right, no matter how wrong they are? Physicians who have unimaginable egos yet who still put their pants on one leg at a time and who urinate and have stinky bowel movements just like the rest of us mere mortals.

Very few hospitals provide the type of true multidisciplinary approach that you have described for every hospitalization. In fact it is the exception rather then the rule. The Mayo Clinic stands out as one example of a hospital that does do this. This is such a desirable model that it is very difficult to get an appointment to be seen at Mayo. More commonly, the admitting physician is responsible for requesting consultations from the specialists that s/he believes should be involved in the patient's care during that hospitalization. (Even if a patient has a past history of a specific illness and sees a specialist for it, that specialist is not generally called in if the reason for that hospitalization is unrelated.).

Even when there is more then one doctor involved in a particular hospitalization, that does not imply that every doctor is in agreement about every aspect of the case. A cardiologist called in to see a hospitalized "Mito" patient is going to address the cardiac symptoms, not necessarily confirm or dispute the Mito diagnosis. The typical insurance company does not generally review every single diagnosis for accuracy. More typically, they review documents to determine IF a requested (usually expensive) treatment is warranted by the clinical picture that has been presented to them. The argument that the all of Justina's medical care was correct and necessary based on the fact that all procedures and prescriptions have been authorized by physicians and the insurance company is simply inaccurate.

I am sorry that you have apparently had a bad experience at some hospital or with some physician in the past. I am very fortunate that my family has not had the sort of negative experience that you have described and implied. My child's rare medical condition requires that we deal with 4 hospitals in 3 states. Three of the four hospitals are highly ranked in the US News annual rankings. Interestingly (to me) the only one that we deal with that is not highly ranked happens to be Tufts. Without exception, all of my child's doctors are curious, collaborative, knowledgeable, pleasant, personable and highly invested in my child's care.

 

[jjenny]

Please provide a link to a msm citation that states that Dr Korson is a "key player" in the newly developed Tufts Medical Center care plan.

The "A Miracle For Justina" Facebook page - run by Jennifer Pelletier - stated Just last week in a post by Jennifer that the family had not yet informed of the details of the Tufts plan. The parents met with the Tufts Medical team for the first time on 5/30/14. They would have learned of the make up of the team at that time. To my knowledge, there have been no "msm" articles about the Justina Pelletier case on or after that date.

"Korson will be a key player on Pelletier’s new medical team, as will other specialists from Tufts, said Julie Jette, a Tufts spokeswoman. However, doctors from other institutions are expected to be on the team, including a neurologist from Boston Medical Center and Flores."

http://www.bostonglobe.com/metro/20...ical-center/rIQlvqj1VsgOsBtOTX3hDJ/story.html

 

[annahanna]

"Korson will be a key player on Pelletier&#8217;s new medical team, as will other specialists from Tufts, said Julie Jette, a Tufts spokeswoman. However, doctors from other institutions are expected to be on the team, including a neurologist from Boston Medical Center and Flores."

http://www.bostonglobe.com/metro/20...ical-center/rIQlvqj1VsgOsBtOTX3hDJ/story.html

Thank you. That is a quote that I did not recall seeing. I may not have paid much attention to it as definitive because it also states: "We&#8217;re happy to be helpful, but a lot of things do need to be worked out,&#8221; said Jette." Details may have changed since then but it is Certainly he most detailed official statement that has been made public to date.

*article publication date March 4, 2014