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

[jjenny]

JMO when the medical records are not public, and they usually aren't, it goes without saying that there is a whole lot information that we just don't know.

And yet we are supposed to assume it favors DCF?
Her condition certainly doesn't appear to be improved after her being in state custody for 15 months.

 

[Donjeta]

Well I don't see any immediately obvious reason to assume that there is nothing that supports the DCF position. The judge was convinced that there was enough information to remove Justina from her family.

I am in favor of making the least assumptions and in this case, assuming that there is something we don't know that makes the DCF actions seem somewhat reasonable, imo requires a lot fewer leaps of assumption than the assumption that DCF took Justina for no reason at all because there was some vast conspiracy to ignore what her medical records plainly state.

 

[txsvicki]

I thought one of the reasons she was taken to the ER was that she wasn't eating. I'd like to know if she's swallowing well and eating now.

 

[believe09]

I think there is abundant media showing how successful influence peddling can be in the Massachusetts court system as well as the high profile failure rate of DCF when it comes to sorting out true cases of child abuse vs. ones that are less clear. JMO, but it seems some what predictable to me that DCF would go all in on a case seemingly backed by Children's Hospital if only to wash the taste from the public's mouth of the recent cases of senseless deaths experienced by children on their radar screen.

One high profile example of influence peddling in the MA court system: Jared Remy
http://www.bostonglobe.com/metro/2014/03/22/remy/xFRaOQqrnZ1S1pfLa2eKgK/story.html

Money talks in that state, not unlike other states for sure. But MA has always been about influence-there is a trial going on right now about the hiring of Probation Officers, for example. The previous president of the Senate in MA was the brother of Whitey Bulger.

Children's Hospital is a behemoth in the state and across the country. Questioning one of its own is like questioning care at the Mayo Clinic. It isn't done. People travel all over the world to have their children seen there-making an epic mistake (if that is what happened) has a chilling effect on the bottom line. Add into the mix a disease that is not well understood and difficult to diagnose.

So yes, I think the possibility exists that there is some kind of thin blue line in this case that is preventing anyone from getting at the truth.

 

[MyBelle]

I think there is abundant media showing how successful influence peddling can be in the Massachusetts court system as well as the high profile failure rate of DCF when it comes to sorting out true cases of child abuse vs. ones that are less clear. JMO, but it seems some what predictable to me that DCF would go all in on a case seemingly backed by Children's Hospital if only to wash the taste from the public's mouth of the recent cases of senseless deaths experienced by children on their radar screen.

One high profile example of influence peddling in the MA court system: Jared Remy
http://www.bostonglobe.com/metro/2014/03/22/remy/xFRaOQqrnZ1S1pfLa2eKgK/story.html

Money talks in that state, not unlike other states for sure. But MA has always been about influence-there is a trial going on right now about the hiring of Probation Officers, for example. The previous president of the Senate in MA was the brother of Whitey Bulger.

Children's Hospital is a behemoth in the state and across the country. Questioning one of its own is like questioning care at the Mayo Clinic. It isn't done. People travel all over the world to have their children seen there-making an epic mistake (if that is what happened) has a chilling effect on the bottom line. Add into the mix a disease that is not well understood and difficult to diagnose.

So yes, I think the possibility exists that there is some kind of thin blue line in this case that is preventing anyone from getting at the truth.

I'm sorry but I just don't see Children's Hospital colluding with DCF. The public isn't going to change it's opinion about DCF's handling of other cases and I doubt Children's Hospital has any interest in shaping public perception about cases they have absolutely nothing to do with.

I think the train has left the station on this one. The Judge is satisfied the truth was unveiled.

JMO

 

[sweetmom]

Things are not as clear as you would like to believe. There obviously is evidence that Justina Pelletier has been medically abused or neglected by her parents. With no evidence, they would not have been reported multiple times by medical providers to DCF. With no evidence, the judge would not have ruled multiple times that Justina's Parents were not fit to care for her medical needs. With no evidence, the guardian ad litem would not have recommended that Justina NOT be returned to her parents' custody. Evidence of abuse or neglect has been presented (multiple times at this point) in court. Since the court records are sealed and the professionals are prohibited from releasing medical information about Justina, the only information you are reading is coming from the parents directly or from a small amount of leaked documents. It is in the parents' best interest to continue to claim that no evidence has been presented. Considering the circumstances and events, that is simply not possible.

You are assuming that the parents were following a Tufts' "protocol for treatment." The parents have claimed repeatedly and loudly that they "only wanted to follow the Tufts physicians' medical instructions." Considering the fact that the Tufts medical staff had previously filed a report with DCF alleging medical abuse or neglect, that claim does not exactly ring true. The Pelletier's have shown considerable evidence that they want to be able to pick and choose which diagnosis to embrace and which treatment to provide to their minor child. That would be fine if Justina did not have significant medical needs. It is not fine, and therefor it is neglect, if they are choosing to ignore and refusing to treat a life threatening or emotionally damaging diagnosis. Obviously, the judge believes that the evidence indicates medical abuse or neglect.

You are also making some assumptions about the Tufts Medical Plan that you can not possibly be privy to - mainly because the Pelletier family has said as recently as today that they have not yet met with the Tufts doctors and therefore do not know the details of the Tufts Medical Center medical care plan. As stated on the Miracle for Justina Facebook page "...still waiting on the tufts meeting!!" It is very possible and imo highly probable that the Tufts plan (which would be newly developed after Justina's recent appointments and evaluations there) will contain much more then "treat for Mito using exactly the plan favored by the parents." The Tufts plan may or may not confirm a Mito diagnosis - after all, Dr Korson has been quoted as stating that Justina had "Suspected Mitochondrial Disease." In medical-ese, that indicates an unconfirmed possible diagnosis. The plan likely calls for continued psychological counseling since Tufts was recommending psychological counseling prior to Justina's admission to Boston Children's. The plan may very well mirror the Boston Children's Hospital care plan that the Pelletier parents vehemently objected to. We will know that to be the case if the parents start claiming that the doctors at Tufts were influenced by, intimidated by, or bullied by Harvard/BCH/ECF etc.

Thanks, Annahanna, for one of the best posts I have seen on this sad case. This is very valuable information, and, in my opinion, right on the money.

 

[annahanna]

I read over the previous posts and, although I might have missed it, I was surprised that I did not see a mention of or link to the clinic note from the director of the Metabolism Program at Boston Children's (Korson's contemporary). This was posted on Beau Berman's FoxCT Facebook on December 23, 2013. Berman posted a statement that he could not reveal his source, but the details in the report appear genuine. I have seen references to it on a few news forums.

Dr Gerard Berry is a geneticist and expert in metabolic diseases (like Mitochondrial Disorders). He initially saw Justina at BCH on February 10, 2013 - the day she was admitted. Without access to the entire medical record, we do mot have any way to know if or how frequently he followed Justina after that date.

https://www.facebook.com/BeauBermanFOXCT

"From Boston Children's Hospital "Consultation Notes" dated 4/25/13 obtained by Fox CT News:

Metabolism Consult 013

Patient Name: Justina Pelletier
Originated by: Stephanie Newton MS on 2/10/13
Authenticated by: Gerard Berry MD on 2/13/13
Print Date/Time: 4/25/2013

"HISTORY OF PRESENT ILLNESS: Justina has a longstanding history of possible mitochondrial disease with abdominal pain, poor motility, headaches and fatigue. These concerns started becoming much more severe in October 2012 when she began having what is described as odd movements of her right leg which caused her foot to pronate. She was seen by an orthopedic doctor, Dr. Webster at Tufts who prescribed a brace for the leg. Over time Justina's abnormal movements began to affect the left leg and now the rest of the body is affected. Her mother reports that over the past week she has had increased weakness which cause (sic) her to not be able to walk. She is having significant leg pain. Her headaches are becoming worse with light and sound. She also has intermittent slurred speech and altered mental status. Her mother reports that over the last 6-8 weeks her slurred speech and 'gibberish language' has been getting worse. Justina was admitted to Connecticut Children's Hospital on Monday February 04 due to worsening neurological problems as noted above. Her mother reports that it was difficult to complete this admission as Justina was not felt to have a known identifiable diagnosis. Her mother chose to bring her home from the hospital on February 8 hoping that she would do better. After discharge she was still not doing well, complained of feeling weird was not eating and had abnormalities on swallowing. Her other physicians were consulted and it was recommended that she be admitted here at Boston Chidlren's Hospital. She has been here since February 10."

 

[jjenny]

And after all the treatment DCF/BCH subjected her to, she doesn't appear to have gotten better.
Her feet look swollen. Lots of her hair looks to be gone.
She still has the gibberish sounding speech based on the tapes that were released.
Some weeks prior to ending up at BCH she could ice skate.
Now she is in a wheelchair and apparently can't walk at all. BCH might have thought they knew better than anyone else, but it sure doesn't look like that to me.

 

[annahanna]

I found the above BCH Clinic note interesting because it provides information that disputes several firmly held beliefs expressed by some members of the public.

Belief: BCH doctors changed Justina's diagnosis based on minutes (hours) long evaluation by junior or student doctors.
Fact: Dr Berry evaluated Justina on February 10, 2013 - the day she was admitted. He is a very senior physician who is well respected in the Mito community. He has published extensively. Dr Berry is certified in pediatrics, biochemical genetics, and pediatric endocrinology.

Belief: BCH completely disregarded Justina's definitive Mitochondrial Disease diagnosis. BCH does not believe in the existence of Mito.
Fact. Dr Berry is a Mito expert employed by BCH who is also a prolific medical researcher. Dr Berry's notes indicate that Justina had a long standing history of "possible mitochondrial disease." His notes also made reference to Justina's (then) recent admission to CT Children's Hospital where
she did not progress as she "was not felt to have a known identifiable diagnosis."

Belief: Justina was perfectly healthy and a competitive figure skater before coming down with the flu and being admitted to BCH.
Fact: The clinic notes indicate that Justina's mother shared the information that Justina's Mito "concerns started becoming much more severe in October 2012" and that "She was seen by an orthopedic doctor, Dr. Webster at Tufts who prescribed a brace for the leg. Over time Justina's abnormal movements began to affect the left leg and now the rest of the body is affected." With those types of leg issues, it is highly unlikely that she was participating in COMPETITIVE figure skating. (Yes I have seen the video but there is no way to know when that was filmed and it does not indicate competitive level skating.)

Belief: Boston Children's Hospital (somehow) caused Justina's mobility issues, speech issues and impaired mental status.
Fact: Justina presented to BCH with 4 months of mobility issues and 6 to 8 weeks of speech and "altered mental status."

Belief: Justina arrived at BCH by ambulance directly from Tufts Hospital.
Fact: Justina was hospitalized at CT Children's Hospital 2/4/13 - 2/8/13. Her mother chose to have her discharged hoping she would do better at home. She was then brought from her home to BCH for admission at the recommendation of her other physicians.

 

[jjenny]

Family never claimed she arrived from Tufts. Family always stated she arrived from CT. Tufts is in Boston, MA.
Family never stated she was perfectly healthy either. She had a stroke at a young age. She had neuropathy of the colon for which she had a cecostomy button surgery. She was a special needs student due to short term memory issues.
But clearly she was in a much better shape. She could ice skate as evidenced by the tape.
It's not clear that Dr. Berry actually examined her. Authenticated by him-what exactly does it mean? He could have just authenticated her medical history. Somebody named Stephanie Newton MS initiated this report. Dr. Berry authenticates it 3 days later.
It's clear that BCH as a whole doesn't discount mitochondrial disease since they actually have a whole department for it.

 

[annahanna]

Family never claimed.....

I found the above BCH Clinic note interesting because it provides information that disputes several firmly held beliefs expressed by some members of the public.

She could ice skate as evidenced by the tape.

I agree that she was able to ice skate at some point in the past. It is not clear from the few photographs and short video provided by the family exactly when that ice show (not competition) took place. I do not believe that there is a date on the images.

It's not clear that Dr. Berry actually examined her. Authenticated by him-what exactly does it mean? He could have just authenticated her medical history. Somebody named Stephanie Newton MS initiated this report. Dr. Berry authenticates it 3 days later.

It is the common practice at BOTH Boston Children's and Tufts, as well as many if not most teaching hospitals, for the clinic notes to be initiated a/k/a dictated by a Physician's Assistant, Nurse Practitioner, Resident, Medical Student or other assistant. These notes are then reviewed, confirmed, or authenticated by the physician - usually several days later. If the physician disagrees with major points in the notes, they are sent back to be corrected. Minor corrections or additions are often made on the original document. This is very standard practice.

Before you try to tell me that the April 25, 2013 date on the document indicates some sort of alteration or malfeasance, I will explain. The April date indicates the date that the specific hard copy of the document was printed from the medical record. The origination date is the date she was seen. The authentication date is the date the attending physician reviewed and approved the note and authorized it to be placed in the medical record.

 

[jjenny]

But there is nothing in the note to suggest Dr. Berry actually examined her.
There are none of his observations. It only talks about her history, that could have been collected by anyone.
As for skating video, I believe it was taken six weeks prior to her ending up at BCH. While she might have not been a competitive figure skater, clearly she could do things she can not do anymore, such as balance herself on one foot. I don't think she can even stand up anymore, let alone balance herself on one foot while figure skating.

 

[annahanna]

That is a standard format for a clinic note. It is not intended to be read by the general public, it is intended for the medical record. Notes do not always specifically state that the physician examined the patient as that is expected to be understood by the person reading the record. The existence of the note authenticated/confirmed/reviewed/etc by that physician indicates that they examined the patient. This document is obviously just the first page of a multi-page document. The specific findings would be on the pages not obtained by Beau Berman of Fox CT News. Some clinical notes will have a statement on the last page that "I Dr X, have personally examined ...." Some but not all. Again this is a very standard format for a medical note. I am glad that you have not had the horrifying experience of needing to be extremely familiar with with this type of document. I have experience with 1/2 a dozen children's hospitals in the US including both Tufts and BCH. The notes do not vary much in format.

As for skating video, I believe it was taken six weeks prior...

6 weeks prior would be about New Years Eve - after the Christmas holidays. IF it is from 2012 at all (and that is not established) it is most likely from several weeks before Christmas as most holiday shows are. That would make it 8 to 10 weeks prior to her BCH admission. As we all know, many things can happen in 8 to 10 weeks. However that does not match with the severity of the leg condition as reported by Linda per the clinical note. This video could be from a holiday show practice as far back as October when she began experiencing an increase in her leg problems. It could also be from the prior year.

You stated this in a previous reply:

And yet we are supposed to assume ...

I find it interesting how much you do assume in favor of the Pelletier Family's story. I don't have the time or the energy to continue to try to clarify this tonight. Have a good night.

 

[Morag]

Justina was unable to walk and was talking gibberish when she was admitted. She had obviously gone downhill from her skating days, whenever that might have been. . Her mother reports that over the last 6-8 weeks her slurred speech and 'gibberish language' has been getting worse. Six to eight weks before February 10 would have been during Christmas vacation.And she probably wasn't speaking gibberish at school, so her condition had worsened under the care of her parents. I had always felt that the doctors who admitted her saw and heard (from her) some very distressing and disturbing things.

As for her hair and the receding hairline- she never wore it in that style before she was admitted, so we can't really determine how severe her hair loss may have been. What I can guess is that her hair has been styled that way by her care-givers to keep her from pulling it out. This child is very sick, and she may or may not have mito.

 

[jjenny]

Justina was unable to walk and was talking gibberish when she was admitted. She had obviously gone downhill from her skating days, whenever that might have been. . Her mother reports that over the last 6-8 weeks her slurred speech and 'gibberish language' has been getting worse. Six to eight weks before February 10 would have been during Christmas vacation.And she probably wasn't speaking gibberish at school, so her condition had worsened under the care of her parents. I had always felt that the doctors who admitted her saw and heard (from her) some very distressing and disturbing things.

As for her hair and the receding hairline- she never wore it in that style before she was admitted, so we can't really determine how severe her hair loss may have been. What I can guess is that her hair has been styled that way by her care-givers to keep her from pulling it out. This child is very sick, and she may or may not have mito.

So these parents have a sick child. They take her to a hospital to get better. Instead hospital contacts DCF and the child is removed from them. In what Universe is this justifiable? BCH treated her in a secure mental ward. Did they improve her? I sure don't see how. She can't walk, she is going bald, and she is still talking gibberish (or at least not understandable). So her condition has not improved under care of BCH/DCF.
What makes DCF to think they know better than her parents do? What was the abuse? Never was anything else suggested but that the parents refused to treat her for somatoform and wanted her treated for mitochondrial disease instead. That decision should be up to the parents. Not DCF or BCH.
Having a sick child with condition resistant to treatment should be not grounds for removal by DCF.

 

[MyBelle]

So these parents have a sick child. They take her to a hospital to get better. Instead hospital contacts DCF and the child is removed from them. In what Universe is this justifiable? BCH treated her in a secure mental ward. Did they improve her? I sure don't see how. She can't walk, she is going bald, and she is still talking gibberish (or at least not understandable). So her condition has not improved under care of BCH/DCF.
What makes DCF to think they know better than her parents do? What was the abuse? Never was anything else suggested but that the parents refused to treat her for somatoform and wanted her treated for mitochondrial disease instead. That decision should be up to the parents. Not DCF or BCH.
Having a sick child with condition resistant to treatment should be not grounds for removal by DCF.

BBM. The universe that includes reality. It is unrealistic to blame a hospital for a psychiatric patient's failure to improve. Just as it is unrealistic to blame a hospital for parents who refuse to accept reality.

JMO

 

[jjenny]

BBM. The universe that includes reality. It is unrealistic to blame a hospital for a psychiatric patient's failure to improve. Just as it is unrealistic to blame a hospital for parents who refuse to accept reality.

JMO

But it's realistic to blame parents because their child is sick and they were seeking treatments for her? Where is the abuse? If she has condition that is resistant to treatment why are parents being blamed?
:banghead:

 

[txsvicki]

I read over the previous posts and, although I might have missed it, I was surprised that I did not see a mention of or link to the clinic note from the director of the Metabolism Program at Boston Children's (Korson's contemporary). This was posted on Beau Berman's FoxCT Facebook on December 23, 2013. Berman posted a statement that he could not reveal his source, but the details in the report appear genuine. I have seen references to it on a few news forums.

Dr Gerard Berry is a geneticist and expert in metabolic diseases (like Mitochondrial Disorders). He initially saw Justina at BCH on February 10, 2013 - the day she was admitted. Without access to the entire medical record, we do mot have any way to know if or how frequently he followed Justina after that date.

https://www.facebook.com/BeauBermanFOXCT

"From Boston Children's Hospital "Consultation Notes" dated 4/25/13 obtained by Fox CT News:

Metabolism Consult 013

Patient Name: Justina Pelletier
Originated by: Stephanie Newton MS on 2/10/13
Authenticated by: Gerard Berry MD on 2/13/13
Print Date/Time: 4/25/2013

"HISTORY OF PRESENT ILLNESS: Justina has a longstanding history of possible mitochondrial disease with abdominal pain, poor motility, headaches and fatigue. These concerns started becoming much more severe in October 2012 when she began having what is described as odd movements of her right leg which caused her foot to pronate. She was seen by an orthopedic doctor, Dr. Webster at Tufts who prescribed a brace for the leg. Over time Justina's abnormal movements began to affect the left leg and now the rest of the body is affected. Her mother reports that over the past week she has had increased weakness which cause (sic) her to not be able to walk. She is having significant leg pain. Her headaches are becoming worse with light and sound. She also has intermittent slurred speech and altered mental status. Her mother reports that over the last 6-8 weeks her slurred speech and 'gibberish language' has been getting worse. Justina was admitted to Connecticut Children's Hospital on Monday February 04 due to worsening neurological problems as noted above. Her mother reports that it was difficult to complete this admission as Justina was not felt to have a known identifiable diagnosis. Her mother chose to bring her home from the hospital on February 8 hoping that she would do better. After discharge she was still not doing well, complained of feeling weird was not eating and had abnormalities on swallowing. Her other physicians were consulted and it was recommended that she be admitted here at Boston Chidlren's Hospital. She has been here since February 10."

I'm no doctor, but all these symptoms, being taken from one hospital to the next. Something is not right. I know darn well that there are neurological tests, brains scans, and heart tests that would show exactly which body system Justina's many symptoms are coming from. Tests must have shown nothing wrong, except for instestinal motility, but why should she have normal motility after being used to the flushing apparatus drilled into her side.

 

[jjenny]

Of course something isn't right-she has a metabolic disorder.
She also has neuropathy of the colon, which is why cecostomy was necessary. She had an extensive testing done before cecostomy was put in by highly reputable doctors.
She was out of her parents custody for 15 months and didn't improve.
Clearly the parents weren't the ones making her sick.

 

[txsvicki]

No offense, but just reading those symptoms and progression of symptoms, and Justina being taken from the first hospital shows me exactly why the ER physician felt that something was really off. I will never believe that mito doesn't show up in blood work or the body system that it is affecting as some abnormality. Justina must show no definite neurological, brain, or vascular damage, or even abnormalities in actual tests. The brain, heart, and spinal cord is really easy to check. Muscles too. Intestinal, I don't know.