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

[Donjeta]

Well BCH seems to be convinced she has a clear cut diagnosis of somatoform. To the point they were forbidding parents from seeking another opinion. She certainly could be a very interesting human subject if one was to study a mechanism of human disease.
I believe DCF would be required to release information whether she was added to any human subjects protocol because of freedom of information act.
That would be the only way to find out for sure.

It's not clear cut for research purposes at all imo. It was reported that she has had a stroke and has learning difficulties. Stroke can leave various lingering long term effects and learning difficulties can be accompanied by a variety of symptoms as well so if she has some kind of psychosocial difficulties any researchers would have a hard time demonstrating reliably which things are due to somatoform and which are due to her earlier diagnoses or the anxiety from the hospitalization and the custody case and her father being so vocal predicting that she's dying etc.


No doubt she would be an interesting subject but in terms of rigorous research quality she'd be a nightmare. You might easily be able to demonstrate that her life is messed up but that's kind of a given and one wouldn't really learn much from that if you're not able to say which ones of the factors A, B, C, D, E, F and so on are the most responsible for her life being messed up. Which you wouldn't be if you only got your filthy paws on her as a research subject after A, B, C, D, E, F and so on already happened.

There is not much money or fame in research that shows that youth with multiple problems have multiple problems as everybody already knows that.

Maybe we will soon see a FOIA report on the human research studies that she has been enrolled in if it is a real concern.

 

[jjenny]

What exactly was messed up in her life prior to being admitted to BCH?
She went to school and from what has been described had many friends.
She was physically not very well at times but there is nothing to suggest that her life was somehow messed up. Nobody said she had behavioral issues or wasn't able to make friends. I believe Boston Globe describes her as being exceedingly polite and gentle girl.

 

[Donjeta]

What exactly was messed up in her life prior to being admitted to BCH?
She went to school and from what has been described had many friends.
She was physically not very well at times but there is nothing to suggest that her life was somehow messed up. Nobody said she had behavioral issues or wasn't able to make friends. I believe Boston Globe describes her as being exceedingly polite and gentle girl.

It is quite possible that she lived a charmed life beforehand but my point is that if you're a researcher and you enroll her in a study after she's been taken into custody, is in psychiatric care and is reportedly "dying physically and mentally" you are going to have a hard time verifying the charmed life and pinpointing the causes in retrospect.

 

[jjenny]

It is quite possible that she lived a charmed life beforehand but my point is that if you're a researcher and you enroll her in a study after she's been taken into custody, is in psychiatric care and is reportedly "dying physically and mentally" you are going to have a hard time verifying the charmed life and pinpointing the causes in retrospect.

There are quite a few investigators in BCH interested in psychosomatic and GI issues. So it's not out of the realm of possibility that somebody could have been interested, considering she has severe symptoms, but BCH believes the symptoms are not caused by anything physical.
Judge in his ruling claimed that Justina has "severe and persistent somatic symptom disorder." Since the judge himself has no medical degree, clearly that diagnosis came from BCH. Since it's severe and persistent, her symptoms are severe and it didn't go away after all the treatment she got at BCH.

 

[Gardenlady]

There are quite a few investigators in BCH interested in psychosomatic and GI issues. So it's not out of the realm of possibility that somebody could have been interested, considering she has severe symptoms, but BCH believes the symptoms are not caused by anything physical.

Judge in his ruling claimed that Justina has "severe and persistent somatic symptom disorder." Since the judge himself has no medical degree, clearly that diagnosis came from BCH. Since it's severe and persistent, her symptoms are severe and it didn't go away after all the treatment she got at BCH.

There are also quite a few people at Bch interested in mito. If they wanted to experiment on her or torture her why not just use that dx and not go through the DCF mess lol?


Sent from my iPhone using Tapatalk

 

[MyBelle]

There are quite a few investigators in BCH interested in psychosomatic and GI issues. So it's not out of the realm of possibility that somebody could have been interested, considering she has severe symptoms, but BCH believes the symptoms are not caused by anything physical.
Judge in his ruling claimed that Justina has "severe and persistent somatic symptom disorder." Since the judge himself has no medical degree, clearly that diagnosis came from BCH. Since it's severe and persistent, her symptoms are severe and it didn't go away after all the treatment she got at BCH.

Why not take a few minutes and bring yourself up to speed on this case? Repeating stale rhetoric and misinformation serves no useful purpose at this point. Over a month ago the Judge ruled he's shifting the management of Justina's care to Tufts and that it will be a multidisciplinary, multi-hospital team guiding her care.

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

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

JMO

 

[MyBelle]

BBM
So, he said that on Friday. And yet on Saturday, at that "rally", he was totally chipper and fresh-faced and trying to be engaging and witty, making little jokes, sparring playfully with his wife... If he really believes his child is dying and being tortured, how can he keep up such a cheerful attitude?

He's a martyr and he's trying to raise money from all those gullible fools who believe this is a right-to-life case.

all, JMO

 

[jjenny]

Why not take a few minutes and bring yourself up to speed on this case? Repeating stale rhetoric and misinformation serves no useful purpose at this point. Over a month ago the Judge ruled he's shifting the management of Justina's care to Tufts and that it will be a multidisciplinary, multi-hospital team guiding her care.

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

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

JMO

Seriously? After over a year in DCF custody, her care is shifted back to Tufts and that's your proof? Of what, exactly? First of all, why after claiming she has somatic symptoms disorder, was her care returned back to Tufts and Dr. Korson?
Second of all, how does DCF justify keeping her away from her family, considering prior to her removal by DCF, she was treated by Dr. Korson?
Third of all, based on what her family says, she only had one appointment with Dr. Korson, and family isn't even allowed to know what kind of treatment she is getting or not.

 

[jjenny]

There are also quite a few people at Bch interested in mito. If they wanted to experiment on her or torture her why not just use that dx and not go through the DCF mess lol?


Sent from my iPhone using Tapatalk

BCH are the only ones who can answer these questions.
Why did they declare her to have somatoform instead of mitochondrial disease? There is no definite proof for either condition. At least until muscle biopsy is done.
They do have people interested in mitochondrial disease.
Mitochondrial disease is a very real disorder, and there are multiple forms of it.
But BCH declared she had somatoform and DCF removed her, since her parents were refusing to follow the somatoform protocol.
So, why, indeed?
And then the judge did rule her care should go back to Tufts, even though the judge still asserts she has somatoform.
It's not clear to me at all as to why exactly BCH, DCF and the judge have done what they have done.

 

[Linda7NJ]

There are quite a few investigators in BCH interested in psychosomatic and GI issues. So it's not out of the realm of possibility that somebody could have been interested, considering she has severe symptoms, but BCH believes the symptoms are not caused by anything physical.

Judge in his ruling claimed that Justina has "severe and persistent somatic symptom disorder." Since the judge himself has no medical degree, clearly that diagnosis came from BCH. Since it's severe and persistent, her symptoms are severe and it didn't go away after all the treatment she got at BCH.

I wonder if listening to her parents telling her that she's going to die in there, that the staff at BCH had no idea what they're doing and behavior modification is torture would cause the child distress?
I think so.


Sent from my iPhone using Tapatalk

 

[jjenny]

I have no doubt that removing a child without behavioral issues from her parents and sticking her first into secure psychiatric ward then into facility that specializes in adolescents with behavioral, psychiatric and substance abuse issues is going to cause this child a whole lot of distress.

 

[CHICANA]

You seem to want to skip the part about it being doctors who called in CPS in this case. Your case doesn't sound at all similar.

JMO

You're right, the case isn't similar, but the system is the same. My case is more along the lines of the case of the girl who was suing her parents. She didn't want to accept consequences, wasn't able to see boyfriend, etc. I never thought in a million years that what happened to me would be possible. I held those that are paid to protect children in the highest regards and I assumed that if a child was removed those parents were guilty of abuse. CPS doesn't have to give the judge anything they don't want to, I had to jump through a lot of hoops to get access to the entire case record.

 

[Linda7NJ]

I have no doubt that removing a child without behavioral issues from her parents and sticking her first into secure psychiatric ward then into facility that specializes in adolescents with behavioral, psychiatric and substance abuse issues is going to cause this child a whole lot of distress.

I see you still didn't bother to click the "services" tab and get up to speed on her current placement ....

Heavy sigh...


Sent from my iPhone using Tapatalk

 

[jjenny]

I see you still didn't bother to click the "services" tab and get up to speed on her current placement ....

Heavy sigh...


Sent from my iPhone using Tapatalk

They can provide any type of service they want. They still specialize in adolescents with behavioral, psychiatric and substance abuse issues.
Not ones with mitochondrial disease. If my exceedingly gentle and polite child was taken from me and put into such facility, I would not be a happy camper.

 

[Curiosum]

Private medical insurance doesn't pay for a taxi or bus or an unnecessary ambulance. Insurance pays for whatever the policy says it will pay for and nothing more. It is all spelled out in the policy.

With the caveat that insurance policies can have additional riders or qualifiers, in general, insurance will pay for medically necessary transfers and subsequent transport via ambulance. A physician needs to certify first that the facility to facility transfer was indicated and medically necessary. Physicians need to certify that the patient requires a specialist/subspecialist, diagnostic test, treatment, or some combination of the aforementioned, not available at the first hospital. So if the hospital in CT did not have a pediatric gastroenterologist and the transferring physician believed that JP needed that then transfer to the nearest facility with such sub specialist would be necessary and medically indicated. Providing that this physician sufficiently stabilized JP to the best of his/her abilities in the context of his/her hospital resources and had spoken with a physician at the receiving facility who accepted JP the transfer would be deemed appropriate as well. Failure to do any of the above merits a COBRA violation and the sanctions for for physicians and hospitals are significant so physicians and administrators are not usually cavalier about this.

Now, if there was a pediatric gastroenterologist at the CT hospital but the P family requested that JP be sent to see Dr. Flores at BCH then the physician should write that the transfer was at patient or family request on the transfer/COBRA form. They still must stabilize JP before transfer and have an accepting physician at BCH. In many cases insurance may disallow ambulance costs for patient request transfers but this is somewhat company/policy/network dependent. Ultimately patients/families have the right to request transfer to a new facility but need to be aware that they may need to cover the cost of transfer. They also need to recognize that there are always risks associated with transfer (including the potential for a MVC or helicopter crash) and that if patient condition deteriorates en route the options for stabilization in the back of a critical care ambulance or in the air may be less than in an established hospital. Weather conditions can be a very relevant part of the discussion. Where I practice it often isn't safe to fly and we've had a few blizzards over the years where all involved have agreed that transport even by ground would be unsafe. In those situations sometimes it is actually safer to admit a child locally even if the facility lacks some resources and initiate treatment with good communication with the tertiary facility. In some cases kids will respond well and transfer will not be needed. I've had this experience in a few cases and the parents were overjoyed. In other cases, we've managed to buy them enough time to fly them out when the weather cooperates.

**Given that JP was transferred from the ED at her local hospital to the ED at BCH it is very likely that the accepting physician was indeed the physician they saw in the ED (or perhaps one of his/her colleagues if his/her shift ended between when they accepted JP and when she actually arrived). ED to ED transfers just require an accepting physician. Inpatient Hospital A to Inpatient Hospital B transfers require an accepting physician and an available bed and can be more difficult to arrange when beds are tight because in reality if BCH (or any other tertiary children's hospital) doesn't have a bed they don't have a bed and you can't transfer.**

 

[Curiosum]

Nope. It was offered though. I had my husband drive me.

truth be told, ambulance was offered only IMO because they had made a mistake.






Sent from my iPhone using Tapatalk

To be fair, in general if I'm transferring an admitted patient to a different hospital I will transfer via EMS. Now if I don't feel that monitoring and potential to intervene is necessary enroute then I will discharge the patient from my hospital and arrange for them to see the other physician in follow up as an outpatient. In that situation then it would be reasonable for a spouse to drive or possibly even for the patient to drive if their condition doesn't preclude that. I will admit that I don't transfer admitted patients to the ED though because well that would be a COBRA violation and I kind of like having my medical license unencumbered.

 

[Curiosum]

Let me be perfectly clear here. In my case ( I don't even remember why I'm discussing this) the hospital did not refer me. I called my orthopedics office...his office contacted his partner because my ortho had flown out of the country for vacation. His office informed his partner.
I was instructed by the partner to enter through the emergency department and to call him when I was 5 minutes away. When I arrived, he was waiting for me. I didn't sign in... Nothing... I was immediately taken back and the problem was corrected.


Sent from my iPhone using Tapatalk

This wasn't a hospital to hospital transfer. You were directed to a local ED by the physician on call for your physician's group.

 

[Curiosum]

No, horribly abused children shouldn't be left with their abuser. Although DCF has done just that on number of occasions.
But this is not the case with Justina, is it?
I haven't seen a shred of evidence she was somehow abused.

Without access to JP's records and the testimony of the physicians involved, I really can't form an opinion. I'm not saying I think I should have that because I do believe that JP has a right to privacy.

From what I have come across in MSM I do see things which make me question if there is a component of medical child abuse involved. If that is the case then I do feel that JP needs to be protected from her abusers. I would also say that if all of her symptoms are truly best explained as a somatoform disorder and her parents are interfering with treatment then she deserves to be in an environment that does support and encourage her treatment.

 

[jjenny]

Without access to JP's records and the testimony of the physicians involved, I really can't form an opinion. I'm not saying I think I should have that because I do believe that JP has a right to privacy.

From what I have come across in MSM I do see things which make me question if there is a component of medical child abuse involved. If that is the case then I do feel that JP needs to be protected from her abusers. I would also say that if all of her symptoms are truly best explained as a somatoform disorder and her parents are interfering with treatment then she deserves to be in an environment that does support and encourage her treatment.

As you can read on the thread, the judge recently transferred her treatment back to Tufts and Dr. Korson (the one who diagnosed her with mitochondrial disorder). Explain this, please, if her symptoms are truly best explained as a somatoform disorder.
Dr. Korson is a metabolic disease specialist at Tufts. He is not a psychiatrist.
Yet her medical treatment was transferred back to him.
So, what gives?
If you want my opinion on this, it's as follows:
BCH treated her for somatoform for over a year. I don't think they produced much if any results. She appears to be in poor shape and could potentially even die (as mitochondrial disease can result in death). You can see by her recent photos she does not look good and is in a wheelchair.
So by allowing her to be seen by Dr. Korson, DCF gets to cover its behind.

 

[Curiosum]

Coming to the aid of his child? Brave?

How has he helped? How has his stance helped his daughter at all?

It hasn't.

What he's doing hasn't helped at all, only he's too enthralled by the media glare and attention to notice or actually care.




Sent from my iPhone using Tapatalk

This I agree with. I really think that the best thing the Ps could have done all along would have been to listen to the physicians with open (which does not imply passive) mind, respectfully question that which they didn't understand or agree with, and try to work with the physicians to come up with a comprehensive treatment plan for their child. We talk a lot about "disruptive physicians" and I'm not saying they don't exist or that they don't compromise care by their actions but the reality is that disruptive parents who don't follow through with recommended treatments, alter histories, or prioritize other things above their child's health and care compromise care as well.