DC - Justina gets standing ovation from Congress

[K_Z]

Psychological treatment for serious mental health conditions is often a lifelong process. It's not like a surgery or chemotherapy that "ends" at some point. There is no "end point" for therapy in serious mental health conditions. There are periods of improvement, and periods of relapse and deterioration.

I completely agree that there is a very troublesome pattern here. And it is not a pattern of "failure" of the medical system to effectively diagnose or treat this patient. It's a failure of the family and the medical system to work together to improve the health of this patient. It always has been, and IMO, always will be for this family. IMO, this family wants her to remain very "sick". The parents thrive on creating and maintaining a situation that medical professionals cannot "fix". IMO. This is how they "win", IMO. Everything is a challenge and a battle for them, IMO.

Justina will be 18 in less than 2 years. Her problems will increase exponentially at that point, IMO. I predict that her father will seek conservatorship/ guardianship. And then her fate is sealed, IMO. She will have no chance to improve or have any kind of independent life, IMO. Very sad situation. She is both a pawn and a victim, IMO.

So she's off to another "new" hospital with her family, to repeat the same cycle again,IMO. Groundhog Day, IMO. Nothing will ever improve here unless she is away from her parents, IMO. Very sad.

 

[jjenny]

Psychological treatment for someone with a physiologically based disease is going to be useless. I have no idea why people here insists she doesn't have a physiological disease. It's rather obvious to me she has something physiologically wrong that is causing these symptoms.

 

[K_Z]

Psychological treatment for someone with a physiologically based disease is going to be useless. I have no idea why people here insists she doesn't have a physiological disease. It's rather obvious to me she has something physiologically wrong that is causing these symptoms.

I agree, she may have physiological illness. But it's equally obvious, IMO, that she has quite a serious psychological/ developmental component that is essentially untreated.

Her parents are not rational, reasonable people, IMO. They have very, very serious psychological and personality issues of their own that they project onto Justina, IMO. JMO. MOO. Etc.

 

[Love143]

I agree, she may have physiological illness. But it's equally obvious, IMO, that she has quite a serious psychological/ developmental component that is essentially untreated.

Her parents are not rational, reasonable people, IMO. They have very, very serious psychological and personality issues of their own that they project onto Justina, IMO. JMO. MOO. Etc.

Completely agree with your whole post. Especially the last part.

 

[annahanna]

Mitochondrial disease is not easy to diagnose. So I really don't think every family with mito diagnosis knows what kind of mito their child has. There can be many different mutations.

"Mitochondrial diseases are difficult to diagnose. Referral to an appropriate research center is critical. If experienced physicians are involved, however, diagnoses can be made through a combination of clinical observations, laboratory evaluation, cerebral imaging, and muscle biopsies. Despite these advances, many cases do not receive a specific diagnosis."

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934633

There are many different mutations which is exactly why the term "Mito" is an umbrella term. The point of the muscle biopsy and genetic testing is to specifically determine those mutations and classify them. There are patients that never get diagnosed at all or never get their form of Mitochondrial Disease classified as they do not get referred to a research center or specialist physician and/or do not have the appropriate testing performed. These patients face significant skepticism over their diagnosis when trying to seek care in other medical centers if they are not exhibiting typical symptoms and do not show typical laboratory findings. (Sounds remarkably like Justina's situation.) Prior to her hospitalization at BCH, Justina had not had those tests done. It is highly likely that both the muscle biopsy and the genetic testing were done early in her hospitalization at BCH - a research hospital with a well regarded Mitochondrial Disease program. Any testing that was not been done at BCH would certainly been done during her hospitalization at Yale New Haven Children's Hospital - also a research hospital with a well regarded Mitochondrial Disease program. With the amount of intensive medical attention she has had, I highly doubt she is at risk of not having her specific form of the disease identified - if it in fact exists. I am not a physician. This, of course, is my opinion based on my interactions with the parents of other patients at Boston Children's Hospital who do have confirmed diagnoses of specifically identified forms of "Mito."

 

[annahanna]

Lets say they requested the move? Is that a crime?
I don't understand what would be the objection to them trying to figure out what exactly is wrong with their child.
Apparently she was accepted. So hopefully somebody can figure it out.

It is not a crime to request a move to another hospital when appropriate. What is troubling here is that it appears to be a pattern for the Pelletier's to request a hospital transfer when things are not going their way. If you go back to the original Boston Globe articles, you will read that their pediatrician believed that they had a habit of doctor shopping and hospital shopping. They took her out of CT children's against medical advice at the start of this saga because they thought she would do better at home. Just days later they rushed her to BCH through a snowstorm and demanded to see a specific physician without an appointment and without following the typical protocol as a new (to the facility) patient. Days later they demanded that Justina be released so that she could see her doctors at Tufts. They screamed for months about transferring her to Tufts under the care of the beloved Dr Korson. Within less then 2 months of returning home, it was clear that she was no longer seeing Dr Korson - even before his position was eliminated by Tufts. She was hospitalized at Yale New Haven foe less then a week before they were talking about transferring her to another hospital. Instead, she was discharged home. Days later, the family again rushed her to Yale. Mow they are talking about transferring her to CHOP. I have been unable to find anything from the family or Reverend Mahoney that states that the transfer has been approved. There are comments from followers, but no confirmation from an official source. Additionally Governor Huckabee did not indicate that any such transfer had been approved when he discussed her case on his show. The transfer talk appears to be just more Pelletier drama. Hospital transfers generally are not negotiated deals and are not brokered by religious advisors. If her doctors thought a transfer would be helpful, it would have happened by now. The fact that she is still in CT, combined with the lack of an update from the family indicates to me that CHOP is not too excited about taking Justina on.

If you have seen an announcement of a transfer to,CHOP for Justina from an official source, I would love to see a link. I have not been able to find one. I have seen over-zealous supporters state that it is a done deal, but I have seen nothing from an official source.

 

[Elley Mae]

The End.

 

[txsvicki]

To me, it is awful how the supporters of Justina on facebook are being strung along. Continuous reports of how to proceed but no real facts other than there were gastro problems and pain. I still hope no one is going to mess with Justina's colon.

 

[octobermoon]

Psychological treatment for serious mental health conditions is often a lifelong process. It's not like a surgery or chemotherapy that "ends" at some point. There is no "end point" for therapy in serious mental health conditions. There are periods of improvement, and periods of relapse and deterioration.

I completely agree that there is a very troublesome pattern here. And it is not a pattern of "failure" of the medical system to effectively diagnose or treat this patient. It's a failure of the family and the medical system to work together to improve the health of this patient. It always has been, and IMO, always will be for this family. IMO, this family wants her to remain very "sick". The parents thrive on creating and maintaining a situation that medical professionals cannot "fix". IMO. This is how they "win", IMO. Everything is a challenge and a battle for them, IMO.

Justina will be 18 in less than 2 years. Her problems will increase exponentially at that point, IMO. I predict that her father will seek conservatorship/ guardianship. And then her fate is sealed, IMO. She will have no chance to improve or have any kind of independent life, IMO. Very sad situation. She is both a pawn and a victim, IMO.

So she's off to another "new" hospital with her family, to repeat the same cycle again,IMO. Groundhog Day, IMO. Nothing will ever improve here unless she is away from her parents, IMO. Very sad.

Thank you for this post. Her mother predicted there would be more hospital stays, etc when they were on the Huckabee show last summer as if she was looking forward to more drama. imo I do think the family thrives (not the right word?) on her being ill and a medical mystery. She won't get better as long as this continues.

 

[i.b.nora]

Thank you for this post. Her mother predicted there would be more hospital stays, etc when they were on the Huckabee show last summer as if she was looking forward to more drama. imo I do think the family thrives (not the right word?) on her being ill and a medical mystery. She won't get better as long as this continues.

Here is Part Four of the Huckabee interview from last June 28, 2014:

http://www.foxnews.com/on-air/huckabee/index.html#/v/3649413682001

And, the Websleuths thread where it was discussed:

http://www.websleuths.com/forums/sh...Christmas-2/page43&highlight=justina+huckabee

 

[sweetmom]

The Rev. Mahoney has posted on Instagram (not sure when, it's a screen grab) that less than an hour after he posted a new prayer request, a doctor came in and told him that whatever it was that the prayer was requested for was going to happen. Mahoney claims this proves that God answered his prayer.

He is not specific about just which prayer he thinks was granted, or if it has to do with a move to the Philadelphia hospital. Which, IMO, would have been in the works long before he posted the request.

He never addresses the question of why God didn't prevent Justina from getting sick in the first place, or prevent all the awful things the family claims have happened. Perhaps he has no answers for those puzzles.

In regard to previous postings about the family "needing' Justina to be sick, I sadly agree that it looks that way. But I can't decide if that is because they are hysterical drama-loving true-believer types with emotional problems of theirown or even worse, cynical manipulators using their own child as a pawn to gain emotional, financial and political support for their paranoid ideas about hospitals and research. IMO, either is really horrible for Justina.

 

[sweetmom]

It has long been understood that emotional/psychological disorders can cause physiological symptoms. Panic attacks, for example, can cause rapid heartbeats, cold sweats, fainting. So can post-traumatic stress disorders. Yes, you can have physiological problems that are caused by mental problems, not by any disease or physical defect. IMO, if you believe (or are told by people you trust, like parents, to believe you cannot walk, you may be unable to make yourself walk. It's very sad, but not unheard of.

 

[octobermoon]

The Rev. Mahoney has posted on Instagram (not sure when, it's a screen grab) that less than an hour after he posted a new prayer request, a doctor came in and told him that whatever it was that the prayer was requested for was going to happen. Mahoney claims this proves that God answered his prayer.

He is not specific about just which prayer he thinks was granted, or if it has to do with a move to the Philadelphia hospital. Which, IMO, would have been in the works long before he posted the request.

He never addresses the question of why God didn't prevent Justina from getting sick in the first place, or prevent all the awful things the family claims have happened. Perhaps he has no answers for those puzzles.

In regard to previous postings about the family "needing' Justina to be sick, I sadly agree that it looks that way. But I can't decide if that is because they are hysterical drama-loving true-believer types with emotional problems of theirown or even worse, cynical manipulators using their own child as a pawn to gain emotional, financial and political support for their paranoid ideas about hospitals and research. IMO, either is really horrible for Justina.

Momma loves the drama, imo

http://a.abcnews.com/images/Health/GTY_mother_collapsed_mar_140225_16x9_992.jpg

 

[jjenny]

It has long been understood that emotional/psychological disorders can cause physiological symptoms. Panic attacks, for example, can cause rapid heartbeats, cold sweats, fainting. So can post-traumatic stress disorders. Yes, you can have physiological problems that are caused by mental problems, not by any disease or physical defect. IMO, if you believe (or are told by people you trust, like parents, to believe you cannot walk, you may be unable to make yourself walk. It's very sad, but not unheard of.

There are also physiological diseases that can cause psychological symptoms. In that case you can have counseling all day long, it won't help until the physiological issue is corrected. Take acute porphyria for example. This disease causes psychiatric issues but they need to be treated for porphyria. Physiological counseling isn't going to do anything for them unless their porphyria is treated properly.

 

[jjenny]

There are many different mutations which is exactly why the term "Mito" is an umbrella term. The point of the muscle biopsy and genetic testing is to specifically determine those mutations and classify them. There are patients that never get diagnosed at all or never get their form of Mitochondrial Disease classified as they do not get referred to a research center or specialist physician and/or do not have the appropriate testing performed. These patients face significant skepticism over their diagnosis when trying to seek care in other medical centers if they are not exhibiting typical symptoms and do not show typical laboratory findings. (Sounds remarkably like Justina's situation.) Prior to her hospitalization at BCH, Justina had not had those tests done. It is highly likely that both the muscle biopsy and the genetic testing were done early in her hospitalization at BCH - a research hospital with a well regarded Mitochondrial Disease program. Any testing that was not been done at BCH would certainly been done during her hospitalization at Yale New Haven Children's Hospital - also a research hospital with a well regarded Mitochondrial Disease program. With the amount of intensive medical attention she has had, I highly doubt she is at risk of not having her specific form of the disease identified - if it in fact exists. I am not a physician. This, of course, is my opinion based on my interactions with the parents of other patients at Boston Children's Hospital who do have confirmed diagnoses of specifically identified forms of "Mito."

I think it's extremely unlikely she had either muscle biopsy or genetic testing while at BCH. After all they quickly (within days) decided she had somatoform.
There is no test for somatoform.
As for her disease being identified-there are people with what should have been a recognizable disease who haven't been diagnosed correctly for years. Ever watched "mystery diagnosis?"

 

[annahanna]

I think it's extremely unlikely she had either muscle biopsy or genetic testing while at BCH. After all they quickly (within days) decided she had somatoform.
There is no test for somatoform.
As for her disease being identified-there are people with what should have been a recognizable disease who haven't been diagnosed correctly for years. Ever watched "mystery diagnosis?"

Justina was admitted to BCH on February 10, 2013 under the neurology service. She was treated on the Neurology floor from that date until her transfer to Bader 5 on or about April 23, 2013. In that 10 week period, she would have been seen by numerous doctors of varying specialties. Her medical needs would have been assessed very carefully and she would have undergone numerous tests. Boston Children's operates under a team approach in which her case would have been reviewed and discussed by all the physicians on the team. The team would have called in consultations for any medical specialty indicated by the patient's symptoms and test results. It is important to note here that at Boston Children's, Mitochondrial Disease patients are treaded on the Neurology floor as the head of the Mitochondrial Disease program is a Neurologist. There is absolutely no reason to believe that Justina was not investigated thoroughly for "Mito". Every conceivable test would have been performed.

"Linda had spent the last three days watching a blizzard of different faces come in and out of Justina’s room, interns, fellows, nurses, and specialists. " At BCH, this would have continued until they had completely ruled out other causes for Justina's symptoms. http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

No, I do not watch "Mystery Diagnosis." However, I fully understand that there are people who never receive, or have great difficulty receiving a diagnosis for what ails them. Some truly have rare disorders or rare presentations of disorders. Some insist on going to one specific doctor or hospital )often small, local and not highly specialized) even when a more suitable placement is available. Others fail to get a diagnosis because they move around from hospital to hospital and doctor to doctor without allowing any enough time for any one doctor or team of doctors to properly investigate the problem - doctor shopping. Some do not follow up appropriately on tests and treatments. Others seem to revel in being ill or having a child who is ill. We know for a fact that Justina Pelletier has been treated at CT Children's, Tufts, Boston Children's, and Yale New Haven Children's. Her family is now seeking a transfer to Children's Hospital of Philadelphia. I don't know much about CT Children's, and I have always had low regard for the now defunct program at Tufts, but I know that the others are top notch facilities. There is no reason to believe that neither BCH or YNH could accurately diagnose Justina's problem. If the transfer to CHOP comes through, will they quickly become frustrated by them as well? If the doctors at CHOP tell them that their child does not have a physiological basis for her symptoms, will the pickets and protests start again? At some point, for the good of their child, they need to accept what multiple doctors appear to be telling them.

 

[annahanna]

SBM:

So she's off to another "new" hospital with her family, to repeat the same cycle again,IMO. Groundhog Day, IMO. Nothing will ever improve here unless she is away from her parents, IMO. Very sad.

Thanks for the laugh! Sadly, I think you are absolutely right. It is Groundhog Day - over, and over, and over again.

 

[sweetmom]

For a slight change of subject, I am wondering if the process to get Justina's Law passed will effectively end when its sponsor. Michele Bachmann, leaves Congress in January. Anyone have any updates on its current status?

 

[sweetmom]

Justina was admitted to BCH on February 10, 2013 under the neurology service. She was treated on the Neurology floor from that date until her transfer to Bader 5 on or about April 23, 2013. In that 10 week period, she would have been seen by numerous doctors of varying specialties. Her medical needs would have been assessed very carefully and she would have undergone numerous tests. Boston Children's operates under a team approach in which her case would have been reviewed and discussed by all the physicians on the team. The team would have called in consultations for any medical specialty indicated by the patient's symptoms and test results. It is important to note here that at Boston Children's, Mitochondrial Disease patients are treaded on the Neurology floor as the head of the Mitochondrial Disease program is a Neurologist. There is absolutely no reason to believe that Justina was not investigated thoroughly for "Mito". Every conceivable test would have been performed.

"Linda had spent the last three days watching a blizzard of different faces come in and out of Justina’s room, interns, fellows, nurses, and specialists. " At BCH, this would have continued until they had completely ruled out other causes for Justina's symptoms. http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

No, I do not watch "Mystery Diagnosis." However, I fully understand that there are people who never receive, or have great difficulty receiving a diagnosis for what ails them. Some truly have rare disorders or rare presentations of disorders. Some insist on going to one specific doctor or hospital )often small, local and not highly specialized) even when a more suitable placement is available. Others fail to get a diagnosis because they move around from hospital to hospital and doctor to doctor without allowing any enough time for any one doctor or team of doctors to properly investigate the problem - doctor shopping. Some do not follow up appropriately on tests and treatments. Others seem to revel in being ill or having a child who is ill. We know for a fact that Justina Pelletier has been treated at CT Children's, Tufts, Boston Children's, and Yale New Haven Children's. Her family is now seeking a transfer to Children's Hospital of Philadelphia. I don't know much about CT Children's, and I have always had low regard for the now defunct program at Tufts, but I know that the others are top notch facilities. There is no reason to believe that neither BCH or YNH could accurately diagnose Justina's problem. If the transfer to CHOP comes through, will they quickly become frustrated by them as well? If the doctors at CHOP tell them that their child does not have a physiological basis for her symptoms, will the pickets and protests start again? At some point, for the good of their child, they need to accept what multiple doctors appear to be telling them.

CT Children's is pretty good, but Yale-NH has the better reputation. I'm surprised the family is looking to hopscotch over NYC on their way to Philly. Next up, Chicago?

 

[forthelost]

Psychological treatment for someone with a physiologically based disease is going to be useless.

Psychological treatment is offered to families with chronic/long term and fatal illness all the time, including with cancer. It might not fix the underlying disease, but it can teach you how to cope with it.