DC - Justina gets standing ovation from Congress

[sweetmom]

From MSM reporting by FoxCT on Feb. 4, 2014:

Linda Pelletier also said that her daughter had had a stroke when she was young but that doctors there have not taken that into account in her care.

From ABCNews.go.com on Feb, 10, 2014:

Justina's ordeal began in 2010, when she had severe cramps because of a stomach blockage, according to her father. Doctors at Connecticut Children's Hospital unsuccessfully tried to "flush" her lower intestinal tract and subsequently did exploratory surgery, he said. Doctors found a congenital band, about 20 inches of cartilage wrapped around her colon and removed that and the girl's appendix, he said.

IMO, if these accounts by the parents are true, then it seems reasonable to think her problems are related to the stroke (speech, movement issues) and/or the colon operation and subsequent cecostomy (bowel motility issues). But neither of those are mitochondrial disease, which in her case was only a "working" diagnosis, according to Dr. Korson, and not conclusively proven.

And I find it very unlikely that any doctors, no matter what Linda Pelletier believes, would fail to take a stroke suffered by a small child as not relevant to later emotional and cognitive issues.

 

[Hiandmighty]

Agreed. Of course doctors would consider a previous stroke, if the child did indeed have one...

 

[annahanna]

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?

Respectfully snipped by me

The liklihood is that no, she is not still seeing Dr Korson at Tufts. I say this for a number of reasons.

1) After a positive summer, Jennifer Pelletier posted her first negative comment on Justina's continued struggle and poor health on August 29, followed by a rant about doctors' neglect and discrimination on September 3rd. Although she did not mention a doctor by name, Dr Korson was Justina's primary physician overseeing her other doctors and other care. It is logical to assume that he would be considered part of the problem or she would have said so as they always did in the past.

2) Justina was hospitalized at Yale New Haven Hospital on September 27, 2014. If she was still under Dr Korson's care, the Pelletier's would have brought her to Tufts to avoid a repeat of the BCH situation.

3) Dr Korson is no longer seeing patients at Tufts and Tufts Floating Hospital for Children has closed their Mitochondrial Disease Program. It was very quietly announced in late September that effective October 1st, these changes would take place. This angered many members of the "Mito" community not only because of what was happening, but the way in which it was happening. Apparently, Tufts did not immediately send out a press release or contact patients/parents. Instead, they just began canceling appointments and declining to make new appointments. An announcement was posted on the MitoAction Facebook page, but may have since been removed. I will post a copy of the announcement as well as a link to a site that copied it from MitoAction. (Mods, please edit as you see fit. This site -Mito Families News! - does not solicit donations, and is a legitimate news outlet for families impacted by mitochondrial diseases.). The Tufts Floating Hospital, MitoAction, and Mito Families News facebook pages all contain references to this change at Tufts. Many of the more inflammatory or angry comments are removed by moderators, but the calmer ones can be found. There have also been some questions on the "Miracle" account about this, but I believe that they have all been removed. I don't understand the secrecy about this unless there is some sort of legal or medical malfeasance involved, but I don't doubt the accuracy of the closing. I know parents impacted by this who are now looking for new doctors for their kids.

"If you have not heard they... I'm sorry to be the bearer of bad news. The Tufts Mitochondrial clinic is shutting down as of tomorrow. Dr Korson is moving on to an educational position.
Here is the most recent update by Mitoaction in regards to all this (they are getting the best info is why I copied the whole update)
"We have an official statement to share from the Tufts Metabolism Program:

"Tufts Medical Center is refocusing its efforts to clinical genetic disorders. Dr. Korson’s position is being eliminated and there will be no metabolic physician at Tufts after November 1. Mitochondrial patients are urged to contact MitoAction or the UMDF for information regarding other physicians who treat mitochondrial patients."

If we can help you, Dr. Korson has been working closely with MitoAction to ensure that his patients will have as smooth of a transition as possible. We have a plan in place and are responding to each request as quickly as possible to offer guidance. Please send a brief email to mito411@mitoaction.org"

It has been stated on several sites that Dr Korson was leaving "to pursue other interests." I think most people will recognize the implication behind the use of that phrase, as well as the unlikelihood of a research hospital shutting down a successful, well regarded program in an orphan disease. As an academic institution, staffing changes like this are generally made in accordance with the academic colander, so the timing is odd. It would be interesting to know what caused this unusual decision.

So, all that to say that I believe Justina's parents are back to doctor shopping. I believe that this started before it was announced that Dr Korson was leaving and Tufts was shutting down the Mitochondrial Disease Program. I certainly hope I am wrong. I want nothing but the best for this child.

All in my opinion

 

[annahanna]

I don't for a minute believe this teen is paralyzed in any fashion, or a paraplegic. She might be weak or have balance problems, or complaints of pain in her legs, but she does not appear to have lower body paralysis, despite the claims of her father.

At the time of discharge from BCH, she would have had various positional braces to prevent contractures and foot drop, visible muscle wasting, and an adaptive wheelchair by now, if she were genuinely paralyzed.

.
If you look on the "Miracle for Justina" Facebook page, there is a video of Justina playing in the family pool. It was posted in early July. (7/5 ?) It is quite apparent from that video that Justina is not paralyzed.

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

sbm
It is highly likely that Boston Children's Hospital did a muscle biopsy on Justina very early in her admission to BCH. They would have ruled out mitochondrial disease in the time period before she was transferred to the Bader 5 unit 10 weeks into her admission.

Agreed. Of course doctors would consider a previous stroke, if the child did indeed have one...

Sorry to jump off your post - just referencing the stroke. I agree with you that doctors would consider a previous stroke and would evaluate if there was a current stroke risk.

When her parents mentioned the stroke in interviews, they said that they did not know when the stroke occurred. Evidence of a past stroke was noticed as an incidental finding on a CT scan when she was about age 6 to 8. Since Justine was a premie, and strokes are a known complication of prematurity, it is likely that her stroke occurred in very early infancy. While it may be a contributing factor in her learning disabilities, and doctors would certainly appreciate knowledge of it in treating her, her prior stroke is not likely to be the cause of new symptoms. Fixation on it is just another symptom of parental overreaction in her medical care. (My micro premie had evidence of a stroke and 3 bleeds in her brain on CT at the age of 2. She is currently a medical student with no cognitive or medical issues. Her sibling with no prior stroke history is the one with extensive medical issues.)

All in my opinion

 

[jjenny]

I think it's pretty obvious that while one child with a stroke can recover with no consequences, there could be severe consequences for another.

"Children usually recover better than adults do because their brains are still growing. However, children can experience permanent complications from stroke, such as seizures, weakness and vision problems."

http://www.stroke.org/site/PageServer?pagename=PEDSTROKE

 

[sweetmom]

Respectfully snipped by me

The liklihood is that no, she is not still seeing Dr Korson at Tufts. I say this for a number of reasons.

1) After a positive summer, Jennifer Pelletier posted her first negative comment on Justina's continued struggle and poor health on August 29, followed by a rant about doctors' neglect and discrimination on September 3rd. Although she did not mention a doctor by name, Dr Korson was Justina's primary physician overseeing her other doctors and other care. It is logical to assume that he would be considered part of the problem or she would have said so as they always did in the past.

2) Justina was hospitalized at Yale New Haven Hospital on September 27, 2014. If she was still under Dr Korson's care, the Pelletier's would have brought her to Tufts to avoid a repeat of the BCH situation.

3) Dr Korson is no longer seeing patients at Tufts and Tufts Floating Hospital for Children has closed their Mitochondrial Disease Program. It was very quietly announced in late September that effective October 1st, these changes would take place. This angered many members of the "Mito" community not only because of what was happening, but the way in which it was happening. Apparently, Tufts did not immediately send out a press release or contact patients/parents. Instead, they just began canceling appointments and declining to make new appointments. An announcement was posted on the MitoAction Facebook page, but may have since been removed. I will post a copy of the announcement as well as a link to a site that copied it from MitoAction. (Mods, please edit as you see fit. This site -Mito Families News! - does not solicit donations, and is a legitimate news outlet for families impacted by mitochondrial diseases.). The Tufts Floating Hospital, MitoAction, and Mito Families News facebook pages all contain references to this change at Tufts. Many of the more inflammatory or angry comments are removed by moderators, but the calmer ones can be found. There have also been some questions on the "Miracle" account about this, but I believe that they have all been removed. I don't understand the secrecy about this unless there is some sort of legal or medical malfeasance involved, but I don't doubt the accuracy of the closing. I know parents impacted by this who are now looking for new doctors for their kids.

"If you have not heard they... I'm sorry to be the bearer of bad news. The Tufts Mitochondrial clinic is shutting down as of tomorrow. Dr Korson is moving on to an educational position.
Here is the most recent update by Mitoaction in regards to all this (they are getting the best info is why I copied the whole update)
"We have an official statement to share from the Tufts Metabolism Program:

"Tufts Medical Center is refocusing its efforts to clinical genetic disorders. Dr. Korson’s position is being eliminated and there will be no metabolic physician at Tufts after November 1. Mitochondrial patients are urged to contact MitoAction or the UMDF for information regarding other physicians who treat mitochondrial patients."

If we can help you, Dr. Korson has been working closely with MitoAction to ensure that his patients will have as smooth of a transition as possible. We have a plan in place and are responding to each request as quickly as possible to offer guidance. Please send a brief email to mito411@mitoaction.org"

It has been stated on several sites that Dr Korson was leaving "to pursue other interests." I think most people will recognize the implication behind the use of that phrase, as well as the unlikelihood of a research hospital shutting down a successful, well regarded program in an orphan disease. As an academic institution, staffing changes like this are generally made in accordance with the academic colander, so the timing is odd. It would be interesting to know what caused this unusual decision.

So, all that to say that I believe Justina's parents are back to doctor shopping. I believe that this started before it was announced that Dr Korson was leaving and Tufts was shutting down the Mitochondrial Disease Program. I certainly hope I am wrong. I want nothing but the best for this child.

All in my opinion

This is an amazing development. I cannot find anything about it online yet via Google and am anxious to read more. I wonder if the Globe plans to write about the facts that Justina is back under hospital care, for nearly a month now, after only 2 1/2 months in her parents' custody, and that Dr. Korson, who made the provisional mito diagnosis that the parents and their supporters have relied on to criticize BCH's treatment of Justina, is now no longer the mito expert at Tufts that he was made out to be (and perhaps never was.)
Also, today is the day that the Miracle website says Justina will receive a diagnosis at Yale-New Haven. I do not know if the family will make that public.

 

[Donjeta]

When is it closing?
The Floating hospital page at Tufts still lists Korson as the chief.
https://www.floatinghospital.org/Pa...-Care-Services/Metabolic-Disease-Program.aspx

 

[K_Z]

It is highly likely that Boston Children's Hospital did a muscle biopsy on Justina very early in her admission to BCH. They would have ruled out mitochondrial disease in the time period before she was transferred to the Bader 5 unit 10 weeks into her admission.

All in my opinion

Respectfully snipped. Completely agree with this.

All of the hyperbole in the news articles and family interviews makes it sound like doctors were just standing around wringing their hands, and relying on the sister's history. Baloney. This child, with this high profile family, and high profile case, at a tertiary care institution, had an extensive work up for everything under the sun, and then some. No doubt in my mind about it. And IMO, docs ruled OUT many more things than they ruled IN. (And that then becomes a diagnostic event, as well.)

My opinion is that the family didn't "like" or agree with whatever was tested for, and whatever the results were, and so chose not to publicize them (which is definitely within their rights). They control the information that is publicized. It's to their benefit to obscure or withhold anything not favorable to their opinions, as it can never be challenged.

 

[annahanna]

When is it closing?
The Floating hospital page at Tufts still lists Korson as the chief.
https://www.floatinghospital.org/Pa...-Care-Services/Metabolic-Disease-Program.aspx

It is my understanding that it is already closed in that they are no longer seeing patients as of October 1st. I believe the official date (if anything is official in this) of the department closing is November 1st. As you found, the website still has a listing of the Mito Program and still lists Dr Korson as the director. The manner that this has happened has been extremely odd. There has been no press release, no formal announcement, but you can't make an appointment and if you had one it has been canceled. If you look on the Tufts Floating Hospital Facebook page, on October 1, the moderator posted the hospital's commenting policy. This was done after numerous angry (and frankly abusive and inappropriate) comments were left about the Mito Program closing. Those comments were removed. They did leave 3 comments to that post that mention the closing. The Mito Families News site also mentions the closing on September 30th as I posted above. Other then that, evidence of the closing is being cleaned up pretty effectively. It doesn't make much sense to me. I probably would not believe it if I did not know families that were scrambling to find care for their kids.

 

[sweetmom]

Respectfully snipped. Completely agree with this.

All of the hyperbole in the news articles and family interviews makes it sound like doctors were just standing around wringing their hands, and relying on the sister's history. Baloney. This child, with this high profile family, and high profile case, at a tertiary care institution, had an extensive work up for everything under the sun, and then some. No doubt in my mind about it. And IMO, docs ruled OUT many more things than they ruled IN. (And that then becomes a diagnostic event, as well.)

My opinion is that the family didn't "like" or agree with whatever was tested for, and whatever the results were, and so chose not to publicize them (which is definitely within their rights). They control the information that is publicized. It's to their benefit to obscure or withhold anything not favorable to their opinions, as it can never be challenged.

That leads me to wonder about the diagnosis pending from Yale-New Haven. If they do publicize it, will that indicate it matches the narrative they are pushing? If they do not, will that indicate that Y-NH is not supporting the family's story?

 

[sweetmom]

It is my understanding that it is already closed in that they are no longer seeing patients as of October 1st. I believe the official date (if anything is official in this) of the department closing is November 1st. As you found, the website still has a listing of the Mito Program and still lists Dr Korson as the director. The manner that this has happened has been extremely odd. There has been no press release, no formal announcement, but you can't make an appointment and if you had one it has been canceled. If you look on the Tufts Floating Hospital Facebook page, on October 1, the moderator posted the hospital's commenting policy. This was done after numerous angry (and frankly abusive and inappropriate) comments were left about the Mito Program closing. Those comments were removed. They did leave 3 comments to that post that mention the closing. The Mito Families News site also mentions the closing on September 30th as I posted above. Other then that, evidence of the closing is being cleaned up pretty effectively. It doesn't make much sense to me. I probably would not believe it if I did not know families that were scrambling to find care for their kids.

I agree that this a highly unusual move by Tufts and is being handled in a strange way. And I am also surprised that the aggrieved mito parents have not gone screaming to the press about it. Would really love to know the underlying story, whether it is directly related to the Justina fiasco or due to some other heretofore unreported problems with Korson and the mito program.

 

[Hiandmighty]

Her parents could make up some diagnosis and the hospital wouldn't be able to correct it, is that right?

 

[sweetmom]

Her parents could make up some diagnosis and the hospital wouldn't be able to correct it, is that right?

Hospitals must abide by the HIPAA privacy rules, and therefore cannot comment publically on any patient's diagnosis. But you are right, the family can say whatever it chooses. Even when Lou was under a gag order to not discuss Justina's condition in the press, he did it anyway and most news sites accepted his version as true, because they could not (or never tried to) get the hospital's side of the story.

 

[annahanna]

I agree that this a highly unusual move by Tufts and is being handled in a strange way. And I am also surprised that the aggrieved mito parents have not gone screaming to the press about it. Would really love to know the underlying story, whether it is directly related to the Justina fiasco or due to some other heretofore unreported problems with Korson and the mito program.

One problem is that Korson is, and has always been, controversial. He had a pattern of "diagnosing" kids without all of the markers that the vast majority of experts consider mandatory for a diagnosis. Apparently, he truly believes that other doctors are too strict with the criteria. These parents believe in him and the diagnosis, but most tried several doctors before they landed at Tufts. Unlike the Pelletier's, most realize that they need to behave calmly and rationally in order to get their kids under the care of another doctor. I suspect that, if the screaming erupts, it will be 6 to 9 months down the road when a bunch of kids are undiagnosed. I don't know the full story - but I would love to. I suspect that the Justina case shined a particularly bright light on what was going on in the program and the discrepancies in diagnostic practices. That may well have resulted in more management oversight of Dr Korson and the program.

** Disclaimer, my child, who is treated at both BCH and Tufts, does not have Mito. We do however know a number of Mito patients from both institutions and have had direct observation of some of the odd goings on. However, the above is my opinion and interpretation.

 

[annahanna]

That leads me to wonder about the diagnosis pending from Yale-New Haven. If they do publicize it, will that indicate it matches the narrative they are pushing? If they do not, will that indicate that Y-NH is not supporting the family's story?

I think you are correct. The public will only hear the diagnosis if it benefits the family to reveal it.

 

[Morag]

I noticed that the Miracle Facebook page very kindly gave the P's home address "if you want to send something to Justina." Thank you annahanna for your information about the goings-on at Tufts.

 

[sweetmom]

I noticed that the Miracle Facebook page very kindly gave the P's home address "if you want to send something to Justina." Thank you annahanna for your information about the goings-on at Tufts.

Right. That reminds me: did anyone following the twists and turns of this case ever find out if the Miracle site is registered as a charity with the State of Connecticut? I recall some inconclusive discussion of that. The site says it is "non-profit" but does not address whether it is registered, which I believe affects whether you can claim a contribution for tax purposes...although IMO, most of the site's devoted patrons probably don't care about that.

 

[sweetmom]

A new post on the Miracle site; pretty much same as the old post. It's dated around 10 pm today, says they are still waiting for results of the testing. I doubt they'll get them this late at night.

 

[sweetmom]

Another post on the Miracle site from Patrick Mahoney, the family spokesperson. He now says tests results are expected tomorrow. No other details.
IMO, what Annahanna said earlier seems likely to me: if the results support the family's position, we will hear details. If it contradicts it, we will not. We'll see what tomorrow brings, and let's hope it is good news for Justina.

 

[sweetmom]

Nothing new has been posted on Justina's condition in the past 24 hours. First they said they would have test results last Friday, then they said today. Seems odd, IMO, that they would tease their Miracle site supporters with posts saying results are imminent, unless their aim is to heighten the drama. If that's not the case, then it is odd that their doctors would string them along that way about when the results would be in.
In any case, if they have indeed received test results, they have not shared them. . . maybe they have not figured out yet how to spin them.