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

[MyBelle]

BCH diagnosed her with somatoform. Somatoform is not something for which emergency treatments are usually necessary. So I am not sure why they would feel she is not ready to discharge. Hospitals don't usually keep patients for long in an emergency treatment nowdays.

Are you a doctor? An expert on Somatoform? Who said she was receiving "emergency treatment" at BCH? Her parents wanted to pull her out after she had been a patient there three days.

It would be great if you would get verified as a medical expert before stating your opinion as fact. Thanks.

 

[Elley Mae]

Are you a doctor? An expert on Somatoform? Who said she was receiving "emergency treatment" at BCH? Her parents wanted to pull her out after she had been a patient there three days.

It would be great if you would get verified as a medical expert before stating your opinion as fact. Thanks.

It's on her siggy, bottom left.


Just my opinion, see it?

 

[jjenny]

Are you a doctor? An expert on Somatoform? Who said she was receiving "emergency treatment" at BCH? Her parents wanted to pull her out after she had been a patient there three days.

It would be great if you would get verified as a medical expert before stating your opinion as fact. Thanks.

Well as we discussed for the last several days in minute detail, she arrived by an ambulance and was taken into emergency department.
I don't think I need to be verified as a medical expert given the information reported by msm.
I am not an expert on somatoform nor do I claim to be, but I am certainly very capable of understanding what somatoform is and what kind of treatments are usually recommended for it.

 

[Curiosum]

The ambulance ride to Boston was from Connecticut. I think it was a private ambulance. The family lived in West Hartford, Connecticut. Their "local" ED was not Tufts. It appears the ambulance went directly to BCH because Dr. Korson suggested a consultation.

They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t eating and was having trouble walking.
....Justina had gone to Children’s Hospital this time because the girl’s main specialist at Tufts, Dr. Mark Korson, wanted Justina to be seen by her longtime gastroenterologist, who had recently moved from Tufts to Children’s.

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

Offering the obvious disclaimer that I've never met JP or any of her family and have never been involved in her care. However, I am dual residency trained in pediatrics and another specialty, have covered EDs, admitted patients, accepted patients in transfer, and transferred patients to other facilities from both EDs and from my own inpatient service. Based on this, supplemented by what has been provided in MSM (including the portion you have quoted above) I presume that:

-JP was brought to the local ED in CT (perhaps by EMS from her home perhaps via private vehicle).
-JP was evaluated in that local ED and the decision was made to transfer her to BCH. This could have happened for various reasons but it is possible that some or all of the below happened:
*The ED physician felt truly transfer was needed because they did not have pediatric sub specialists at their facility.
*The parents demanded transfer to Flores. Or perhaps they demanded transfer to Korson (and he weighed in that BCH would be better because that was where Flores was and convinced the ED physician to set that up).
-The ED physician spoke with a physician in the ED at BCH who accepted JP
-The local ED in CT arranged for transfer via EMS. It is possible it was a private squad they used but I don't think this tells us anything about the necessity of transfer. It might actually imply that the transfer was deemed more critical. In our area most of our squads are for profit/corporate private squads. We do still have some local squads and even one local volunteer squad but they usually do not go out of county and some of them only do BLS. In our state we are required to allow patients to select their squad although most patients are open to the first available and suitable squad. The transferring physician decides what level of care (i.e. BLS, ALS, ALS with paramedic/CCT) and what form(i.e.. ground or flight) of transport is best. This depends on patient condition and what the physician predicts will be needed enroute.
-EMS squad arrives at local hospital, loads up JP, allows mom to ride up front (not uncommon with pediatric transport), and takes off for BCH

I don't see where Tufts was involved in this, other than it is possible that the ED physician may have spoken with Dr. Korson or someone covering for him that night.

 

[forthelost]

I'm concerned with why they went to BCH in a snowstorm for what appeared to be an acute condition. If she had the flu and was in bad shape because of it, I would have just treated that locally and gone to BCH once she was more stable. The cost of it doesn't come into that.

 

[i.b.nora]

It's on her siggy, bottom left.
Just my opinion, see it?

If a person opts to turn off all that stuff, like signatures, and avatars, and bells and whistles then they don't see that stuff. That's why if a person is a verified this or that it gets stated in the slot under the nick. That way, it can be seen by all, members and visitors alike.

I turned off all that stuff years ago, and don't see it unless I make a concious effort to look at someone's profile. I am sure I am not the only one to turn that stuff off. IMO, if it is someone's opinion, it should appear within the actual post. Although, granted, I don't think there is a forum rule that says that.

 

[jjenny]

I'm concerned with why they went to BCH in a snowstorm for what appeared to be an acute condition. If she had the flu and was in bad shape because of it, I would have just treated that locally and gone to BCH once she was more stable. The cost of it doesn't come into that.

If given another choice, I think its rather obvious parents would have not taken her into BCH at all. But that is neither here nor there.

 

[i.b.nora]

In an interview with Glenn Beck on or about February 17, 2014, BlazeTV (available on YouTube, you will have to google it like I did), in Part One, Lou says in answer to a question by Glenn.

I have paraphrased as best I can:

On a snowy blizzardy weekend, a year ago on February 10th, Justina, accompanied by her mother, went from Connecticut Children's Hospital to Boston Children's Hospital. To be covered by insurance she had to go by ambulance where she was to be a direct admission to the GI floor. She was going to see her old doctor who left Tufts, along with most of his compadres, a month earlier. "He is the, er... one of, the world experts on GI motility."​

 

[MyBelle]

Offering the obvious disclaimer that I've never met JP or any of her family and have never been involved in her care. However, I am dual residency trained in pediatrics and another specialty, have covered EDs, admitted patients, accepted patients in transfer, and transferred patients to other facilities from both EDs and from my own inpatient service. Based on this, supplemented by what has been provided in MSM (including the portion you have quoted above) I presume that:

-JP was brought to the local ED in CT (perhaps by EMS from her home perhaps via private vehicle).
-JP was evaluated in that local ED and the decision was made to transfer her to BCH. This could have happened for various reasons but it is possible that some or all of the below happened:
*The ED physician felt truly transfer was needed because they did not have pediatric sub specialists at their facility.
*The parents demanded transfer to Flores. Or perhaps they demanded transfer to Korson (and he weighed in that BCH would be better because that was where Flores was and convinced the ED physician to set that up).
-The ED physician spoke with a physician in the ED at BCH who accepted JP
-The local ED in CT arranged for transfer via EMS. It is possible it was a private squad they used but I don't think this tells us anything about the necessity of transfer. It might actually imply that the transfer was deemed more critical. In our area most of our squads are for profit/corporate private squads. We do still have some local squads and even one local volunteer squad but they usually do not go out of county and some of them only do BLS. In our state we are required to allow patients to select their squad although most patients are open to the first available and suitable squad. The transferring physician decides what level of care (i.e. BLS, ALS, ALS with paramedic/CCT) and what form(i.e.. ground or flight) of transport is best. This depends on patient condition and what the physician predicts will be needed enroute.
-EMS squad arrives at local hospital, loads up JP, allows mom to ride up front (not uncommon with pediatric transport), and takes off for BCH

I don't see where Tufts was involved in this, other than it is possible that the ED physician may have spoken with Dr. Korson or someone covering for him that night.

The family has said the reason they went to BCH was because Dr. Korson recommended it to them. He's at Tufts. Boston is several hours from Hartford and there was a snow storm slowing traffic to a crawl. Is a kid having difficulty swallowing and walking really too difficult case for a children's hospital in Hartford?

Maybe it is my slow layman's grasp of all this but to me, the Connecticut Children's Hospital in Hartford should have pediatric specialists on hand without the need to call for a consult at one facility and then ship off a patient to a third facility. Just seems to be beyond excessive, imo.

If that's the accepted way of handling a patient, it certainly explains why our health insurance premiums cost nearly as much as our house payment.

 

[lawstudent]

I don't know why I came back to this thread, but again, somatoform disorder and mitochondrial disease or any other physical problem are NOT MUTUALLY EXCLUSIVE.

Did the judge's order or anyone else ever state she definitely didn't have the disease or health problems? I'm pretty sure that's not the case. I think it's clear she has physical health problems.

People with severe physical health problems causing issues since infancy are much more likely to develop mental health issues related to the trauma and other problems it causes.

It doesn't sound like there is much you can do to treat mitochondrial disease either - the whole problem is how undefined and difficult to accurately treat both conditions are. She could be having physical symptoms that are not very dangerous in and of themselves, but her mental state could be deeply affected by them. Issues with appetite, headaches, sleep, anxiety, depression, medications, etc. The quick diagnosis and emergency treatment is definitely not typical of a simple diagnosis of a conversion-type disorder, because that is usually addressed through therapy. What happened here strongly suggests that the way she was presenting led doctors to believe she was a danger to herself for one reason or another, whether people acknowledge it or not. That's pretty much the only explanation that makes sense for this whole situation and the custody loss. She may indeed have physical health problems, but not have been in need of the treatments she was getting, and that is why treatment is now focused on the mental health aspect.

 

[1&2&3]

My big question is that we have two major hospitals with differing diagnoses! BCH said one test they did (it was named but I have no idea where to find it) showed she did not have mito. Why did they not do the muscle biopsy which is the apparent tell-tale test for mito?
Dr. Korson needs to do that test ASAP once Justina is in his care again. Is it possible that both diagnosis are wrong?

The bigger question, why was Justina denied seeing Dr. Flores?

My opinions only!

 

[MyBelle]

My big question is that we have two major hospitals with differing diagnoses! BCH said one test they did (it was named but I have no idea where to find it) showed she did not have mito. Why did they not do the muscle biopsy which is the apparent tell-tale test for mito?
Dr. Korson needs to do that test ASAP once Justina is in his care again. Is it possible that both diagnosis are wrong?

The bigger question, why was Justina denied seeing Dr. Flores?

My opinions only!

It is difficult to follow the many twists of this case because the family decided they would disseminate their own facts. Whether all their facts have a basis in truth remains to be seen. I doubt Justina was denied seeing Dr. Flores. I think it is more logical to believe Dr. Flores denied her parents from seeing him and I can certainly understand why.

JMO

 

[Minette]

I am no expert on somatoform disorder, but it occurs to me that if you have a teenager who (according to my layman's understanding of the disorder) is preoccupied with her health and the idea that she is sick when she really isn't that keeping in her in a hospital for an entire YEAR might not be doing a lot of cure her of that misconception.

Heart transplant patients don't stay there that long. The guy who lost both his legs in the Boston Marathon bombing didn't stay there that long. As I previously mentioned, my paranoid schizophrenic mother never stayed in the hospital that long after the first episode when she was diagnosed as incurable (back in the 60s, now that long of a stay for even the most severe psychiatric disorders is unusual, not counting the criminally insane who are for all practical purposes incarcerated.)

So very honestly, I do not at all understand how this extended stay *confined in a hospital* is in Justina's best interests. If her parents are all that terrible (I mean, besides hanging out with right wing interest groups and raising money) and actively abuse her (which has never been specifically stated) then put her in an experienced foster home, continue supervised visits, charge her parents for whatever abuse they have committed but don't treat her like she is criminally insane.

IMO, she is being treated as a prisoner, and whatever you may think of the parents, I can in no way see that this condition she is said to have (which again according to my reading is treated by CBT, NOT isolation on a hospital ward) cannot be justified as being in Justina's best interests.

And if there weren't some deep pockets paying for it (whether that be DCF, Medicaid, a private insurer under a court order to do so) I see no way in h*** she would be stuck in this limbo.

Right now it seems everyone is so entrenched in their positions and bustling around justifying their actions and excoriating the other side that Justina has been lost in the middle. IMO, of course. A 16 year old girl, mind you. Appalling.

 

[jjenny]

Stress is not good for either somatoform or mitochondrial disease. DCF is keeping this child away from her family and friends.
So it's no surprise if she is deteriorating.

 

[jjenny]

I don't know why I came back to this thread, but again, somatoform disorder and mitochondrial disease or any other physical problem are NOT MUTUALLY EXCLUSIVE.

Did the judge's order or anyone else ever state she definitely didn't have the disease or health problems? I'm pretty sure that's not the case. I think it's clear she has physical health problems.

People with severe physical health problems causing issues since infancy are much more likely to develop mental health issues related to the trauma and other problems it causes.

It doesn't sound like there is much you can do to treat mitochondrial disease either - the whole problem is how undefined and difficult to accurately treat both conditions are. She could be having physical symptoms that are not very dangerous in and of themselves, but her mental state could be deeply affected by them. Issues with appetite, headaches, sleep, anxiety, depression, medications, etc. The quick diagnosis and emergency treatment is definitely not typical of a simple diagnosis of a conversion-type disorder, because that is usually addressed through therapy. What happened here strongly suggests that the way she was presenting led doctors to believe she was a danger to herself for one reason or another, whether people acknowledge it or not. That's pretty much the only explanation that makes sense for this whole situation and the custody loss. She may indeed have physical health problems, but not have been in need of the treatments she was getting, and that is why treatment is now focused on the mental health aspect.

Excuse me, but by definition somatoform disorder is a disorder where physical symptom can not be explained by physical reasons. If she has mitochondrial disorder, her physical symptoms can be explained by physical reasons. Then by definition that rules out somatoform disorder.

"Somatoform disorders are mental illnesses that cause bodily symptoms, including pain. The symptoms can't be traced back to any physical cause. And they are not the result of substance abuse or another mental illness."

http://www.webmd.com/mental-health/somatoform-disorders-symptoms-types-treatment

 

[lawstudent]

It is difficult to follow the many twists of this case because the family decided they would disseminate their own facts. Whether all their facts have a basis in truth remains to be seen. I doubt Justina was denied seeing Dr. Flores. I think it is more logical to believe Dr. Flores denied her parents from seeing him and I can certainly understand why.

JMO

Agreed, but as you said, we don't have enough facts to know for sure.

My big question is that we have two major hospitals with differing diagnoses! BCH said one test they did (it was named but I have no idea where to find it) showed she did not have mito. Why did they not do the muscle biopsy which is the apparent tell-tale test for mito?
Dr. Korson needs to do that test ASAP once Justina is in his care again. Is it possible that both diagnosis are wrong?


My opinions only!

People seem to have trouble understanding that multiple diagnoses are not uncommon at all. If something isn't easily diagnosed/tested for, you can go years with competing diagnoses. This is particularly true in mental health diagnoses, but there are tons of physical ones as well. Watch a show like House or Mystery Diagnosis to see some examples. Neither disorder can be conclusively tested for, so it is possible both could be wrong. It is also possible both could be right. Doctors also often can have major disagreements on an appropriate course of treatment. It's a tricky job.

I am no expert on somatoform disorder, but it occurs to me that if you have a teenager who (according to my layman's understanding of the disorder) is preoccupied with her health and the idea that she is sick when she really isn't that keeping in her in a hospital for an entire YEAR might not be doing a lot of cure her of that misconception.

Heart transplant patients don't stay there that long. The guy who lost both his legs in the Boston Marathon bombing didn't stay there that long. . . . . [snipped by me] If her parents are all that terrible (I mean, besides hanging out with right wing interest groups and raising money) and actively abuse her (which has never been specifically stated) then put her in an experienced foster home, continue supervised visits, charge her parents for whatever abuse they have committed but don't treat her like she is criminally insane.

IMO, she is being treated as a prisoner, and whatever you may think of the parents, I can in no way see that this condition she is said to have (which again according to my reading is treated by CBT, NOT isolation on a hospital ward) cannot be justified as being in Justina's best interests.

This is exactly my point - she is being held a very long time in a confined environment, which is indeed extremely unusual, even for somatoform. That is why I strongly believe she has been judged a danger to herself. Then you can be held as a prisoner. They're not keeping her in for normal medical treatment if they think it is largely a mental issue. They are keeping her in psychiatric care, I'd imagine. There's no reason for her to still be there otherwise.

Excuse me, but by definition somatoform disorder is a disorder where physical symptom can not be explained by physical reasons. If she has mitochondrial disorder, her physical symptoms can be explained by physical reasons. Then by definition that rules out somatoform disorder.

"Somatoform disorders are mental illnesses that cause bodily symptoms, including pain. The symptoms can't be traced back to any physical cause. And they are not the result of substance abuse or another mental illness."

http://www.webmd.com/mental-health/somatoform-disorders-symptoms-types-treatment

Right, but that does not mean you have no physical health problems. It means at least some of your symptoms are not explained by physical reasons. The symptoms cannot be *fully* explained by a medical condition or are *in excess* of what the condition would cause, according to the diagnostic manual.

Somatoform disorders include Hypochondriasis and body dismorphic disorder. Hypochondriacs may have real health problems, but then they believe they have much more serious ones. People with body dismorphic disorder may have some unattractive physical features, but their response to it goes way beyond the normal issues people experience.

 

[jjenny]

Mitochondrial disease can affect multiple organs and have a wide range of symptoms. So there wouldn't be any symptoms left in excess if she has mitochondrial disease. This is a very serious condition that can be fatal.
BCH refused to accept this diagnosis and diagnosed her with somatoform instead.

 

[Linda7NJ]

Agreed, but as you said, we don't have enough facts to know for sure.







People seem to have trouble understanding that multiple diagnoses are not uncommon at all. If something isn't easily diagnosed/tested for, you can go years with competing diagnoses. This is particularly true in mental health diagnoses, but there are tons of physical ones as well. Watch a show like House or Mystery Diagnosis to see some examples. Neither disorder can be conclusively tested for, so it is possible both could be wrong. It is also possible both could be right. Doctors also often can have major disagreements on an appropriate course of treatment. It's a tricky job.







This is exactly my point - she is being held a very long time in a confined environment, which is indeed extremely unusual, even for somatoform. That is why I strongly believe she has been judged a danger to herself. Then you can be held as a prisoner. They're not keeping her in for normal medical treatment if they think it is largely a mental issue. They are keeping her in psychiatric care, I'd imagine. There's no reason for her to still be there otherwise.







Right, but that does not mean you have no physical health problems. It means at least some of your symptoms are not explained by physical reasons. The symptoms cannot be *fully* explained by a medical condition or are *in excess* of what the condition would cause, according to the diagnostic manual.



Somatoform disorders include Hypochondriasis and body dismorphic disorder. Hypochondriacs may have real health problems, but then they believe they have much more serious ones. People with body dismorphic disorder may have some unattractive physical features, but their response to it goes way beyond the normal issues people experience.

There is a reason she spent soooo much time in the PSY ward.
It was the direct result of her parents interference and threats to every other placement they tried to move her to.....Even the placement 20 minutes from her own home.





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[jjenny]

There is a reason she spent soooo much time in the PSY ward.
It was the direct result of her parents interference and threats to every other placement they tried to move her to.....Even the placement 20 minutes from her own home.





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So says DCF.
I am not sure why you believe their every word. DCF has been claiming for while now they are trying to place her in CT. Yet there she is, still in MA.

 

[Linda7NJ]

So says DCF.
I am not sure why you believe their every word. DCF has been claiming for while now they are trying to place her in CT. Yet there she is, still in MA.

So says the GAL, the placement, and the judge too.

It's detailed in the court order.


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