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

[CathyinTexas]

So there is an anonymous billionaire footing the bill and they're still asking for donations?

What for?????


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Loss of wages due to the time spent in MA advocating for their daughter. Travel expenses, etc. People know what they are doing. Many homes have been foreclosed on, and when people are in need and hurting, why would the people in the town be so indifferent?

 

[Linda7NJ]

I think there are many children who are removed who shouldn't have been and there are also as many who should have been who weren't and things ended badly. Also, this type of case should not be equated with typical case of abuse in the home.

When a child's life is in danger, or at high risk of harm...it's acted upon. As it should be.





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[CathyinTexas]

I scanned through this thread but found little coverage by any credible media. I recognize that I don't know what is really going on but I sure hope that the parents aren't 'abusing' the situation.

Wouldn't it be wonderful if this young girl could have a straight forward life. Having health problems is tough enough at that age.

Hoping for the best outcome, whatever that might be!

The parents are continually criticized here, but there are 3 other adults who are advocating and confirming what the parents say are true. They are her sisters who are well adjusted, successful adults. They are devastated by this. They are out in the public too. Why is that ignored by the critics?

 

[epiphany]

Thanks for stating exactly what I fear is true, Linda7NJ. A lot of the right-wing websites, such as Liberty Voice, claim some "anonymous billionaire" is paying the Pelletiers' legal bills. But apparently he doesn't do real estate bills.... IF such a person actually exists.

one such posting from LV on Feb. 28 says:

"An anonymous billionaire has stepped forward to fund a campaign to free Justina Pelletier, the young American teenager at the heart of a dramatic custody battle between her parents and Massachusetts hospital authorities. While he will be footing the bill for new lawyers set to fight for Justina to be returned to the care of her parents, campaigners are planning a weekend rally and prayer vigil outside the facility where Justina is being held...."

Please link to this quote ^^ so we can read the entire article.

 

[CathyinTexas]

Right for whom? His ego or for Justina? Apparently her release from the psychiatric wing was delayed for several months because of Lou's belligerence. Had she been transferred to the Connecticut facility in June last year like the plan was and if the parents cooperated with family therapy and visits etc. she could already have been home for a while.

Instead they hold rallies.

There are some details that seem to forgotten in this case. She was taken into custody Feb 14, 2013, it wasn't till November Lou broke the gag order and went public. He was trying to go along, hearing after hearing, and the whole time he believed his daughter to be suffering and getting worse medically. That is a long time. He didn't start shouting from the housetops until 9 months later. I heard Jennifer say that the statement the HHS director said was a lie about Justina's medical condition. So, apparently government officials do lie, and doctors covering their As in my opinion do to.

 

[Linda7NJ]

Loss of wages due to the time spent in MA advocating for their daughter. Travel expenses, etc. People know what they are doing. Many homes have been foreclosed on, and when people are in need and hurting, why would the people in the town be so indifferent?

Looks more like campaign funding under false pretenses to me.

"People" have no idea what they are doing. They are blinding buying into one side.
The families financial woes started long before Justina went to Children's.
Looks to me... Like Lou views Justina as the goose that's laying his golden egg. He's using her to further his own agenda.
That agenda has nothing to do with reunification.

All IMO

It's all very very sad to me.


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[i.b.nora]

Please link to this quote ^^ so we can read the entire article.

Its the Liberty Voice organization so-called 'news':

http://guardianlv.com/2014/02/billionaire-lawyers-campaigners-rally-to-free-justina-pelletier-video/

I believe I first heard the billionaire mentioned on a Glenn Beck video.

 

[annahanna]

I say this because the facts shout conflict of interest to me. It was in the professionals best interest to see somatoform, imo. Maybe they did convince themselves (probably) that she met the criteria, although it is a diagnosis that is arrived at over time, seeing a pattern, and looking at medical records, talking to physicians, which they did not do in the short amount of time it took for them to make it.

But don't you see that if you believe that it is a "conflict of interest" for an expert in somataform to diagnose somataform then it is also a conflict of interest for an expert in mitochondrial disease to diagnose mitochondrial disease?

Contrary to what some people have said in the media, the diagnosis of somataform is neither new not does it take days, weeks, or months to diagnose. (Yes I am aware of what the lead author of the DSM-IV has said - but since he was not involved in the DSM-V - isn't that too a "conflict of interest?") It is true that somataform has taken on new focus in the DSM-V, but it is not a new concept or a new diagnosis. When my child first began exhibit unusual symptoms - and perplex a number of doctors, one of the first things we did was establish a relationship with a good psychologist. He tested for a number of psychological disorders including somataform. It took a total of about 5 hours to determine that the only psychological component of my child's illness was under-reporting rather then over-reporting symptoms. This was 6 years ago. Since Justina was hospitalized at the time, and the psychologist spent time with Justina both in and out of Linda's presence, she had quite a bit of time to make her diagnosis. (Admission 2/10/13, diagnosis 2/13/14.)

 

[Linda7NJ]

I know DCF wanted psychological evaluations on both Lou and Linda.
Is bet they have not complied ...


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[CathyinTexas]

It is in no professional's best interests to make false diagnoses.

I very much doubt that they get paid by the number of somatoform patients that they diagnose.

They need subjects for their grant money studies. But also, it is rare for a person to be in a psych hospital ward for a long period of time. She was there 9 months. Of course they want the public to think it was Lou's fault. That is ridiculous. They had to be getting the money from somewhere for that stay. I doubt it was the insurance company.

 

[CathyinTexas]

Looks more like campaign funding under false pretenses to me.

"People" have no idea what they are doing. They are blinding buying into one side.
The families financial woes started long before Justina went to Children's.
Looks to me... Like Lou views Justina as the goose that's laying his golden egg. He's using her to further his own agenda.
That agenda has nothing to do with reunification.

All IMO

It's all very very sad to me.


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I am sure having two daughters with complex medical conditions drain the finances. That is most likely the reason for their money problems. I know many families in the autism community who broke, mortgage their house and sometimes lose their house because of the cost of caring for their child. I am not gullible, I do see this as a cause I want to be a part of. So it is insulting to make the statement you did. It is just your opinion.

 

[CathyinTexas]

But don't you see that if you believe that it is a "conflict of interest" for an expert in somataform to diagnose somataform then it is also a conflict of interest for an expert in mitochondrial disease to diagnose mitochondrial disease?

Contrary to what some people have said in the media, the diagnosis of somataform is neither new not does it take days, weeks, or months to diagnose. (Yes I am aware of what the lead author of the DSM-IV has said - but since he was not involved in the DSM-V - isn't that too a "conflict of interest?") It is true that somataform has taken on new focus in the DSM-V, but it is not a new concept or a new diagnosis. When my child first began exhibit unusual symptoms - and perplex a number of doctors, one of the first things we did was establish a relationship with a good psychologist. He tested for a number of psychological disorders including somataform. It took a total of about 5 hours to determine that the only psychological component of my child's illness was under-reporting rather then over-reporting symptoms. This was 6 years ago. Since Justina was hospitalized at the time, and the psychologist spent time with Justina both in and out of Linda's presence, she had quite a bit of time to make her diagnosis. (Admission 2/10/13, diagnosis 2/13/14.)

I said it was because they needed a new subject for their study on Somatoform not just a diagnosis. <modsnip>

 

[CathyinTexas]

I know DCF wanted psychological evaluations on both Lou and Linda.
Is bet they have not complied ...


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Innocent people should not have to submit to anything. They did nothing wrong, they aren't child abusers, and the state was in the wrong. All just my opinion.

 

[annahanna]

There are some details that seem to forgotten in this case. She was taken into custody Feb 14, 2013, it wasn't till November Lou broke the gag order and went public. He was trying to go along, hearing after hearing, and the whole time he believed his daughter to be suffering and getting worse medically. That is a long time. He didn't start shouting from the housetops until 9 months later. I heard Jennifer say that the statement the HHS director said was a lie about Justina's medical condition. So, apparently government officials do lie, and doctors covering their As in my opinion do to.

The gag order was put in place 11/7/13 and lifted 3/3/14. Lou Pelletier began breaking the court order almost immediately (with a Fox CT article 11/19 and others).

I first heard about this case in May 2013. It may be because my child was hospitalized at Boston Children's at the time. I don't really recall who told me about it. I was interested, so I looked for information about it at the time. There were small local articles, facebook posts, forum/message board entries, etc all along. The Boston Globe (according to Lou Pelletier) interviewed them way back in April 2013 but the article did not appear in print until December 2013. The Globe article really started the firestorm of attention, but information on the case existed in the public domain all along.

 

[annahanna]

They need subjects for their grant money studies. But also, it is rare for a person to be in a psych hospital ward for a long period of time. She was there 9 months. Of course they want the public to think it was Lou's fault. That is ridiculous. They had to be getting the money from somewhere for that stay. I doubt it was the insurance company.

Boston Children's does not lack for participants in their research studies. They have no need to manufacture them. Having a disputed diagnosis disqualifies her from research studies anyway. The day she became a ward of the state, 2/14/13, MassHealth became her insurer and all her bills were paid by them. MassHealth reimbursements are so low, the hospital was lucky to cover her costs - there certainly was no profit involved - nor was there any "extra" to fund research.

 

[Donjeta]

There are some details that seem to forgotten in this case. She was taken into custody Feb 14, 2013, it wasn't till November Lou broke the gag order and went public. He was trying to go along, hearing after hearing, and the whole time he believed his daughter to be suffering and getting worse medically. That is a long time. He didn't start shouting from the housetops until 9 months later. I heard Jennifer say that the statement the HHS director said was a lie about Justina's medical condition. So, apparently government officials do lie, and doctors covering their As in my opinion do to.

He may have complied with the gag order but he did not comply with the plans that would have got Justina closer to the home. He was reportedly abusive and made threats to several people involved in Justina's case. If that's his idea of trying to go along he hasn't got a clue.

As to who, if anybody, lied about Justina's medical condition, we'd need to see her medical records to determine that, don't you think? The word of the Pelletiers is not sufficient evidence imo. It is also possible to make false statements for reasons other than lying, like being mistaken.

They need subjects for their grant money studies. But also, it is rare for a person to be in a psych hospital ward for a long period of time. She was there 9 months. Of course they want the public to think it was Lou's fault. That is ridiculous. They had to be getting the money from somewhere for that stay. I doubt it was the insurance company.

Everybody loves a good conspiracy theory but that is nonsense imo. If they want to study somatoform patients but instead recruit subjects who don't have somatoform and don't fulfil the criteria for inclusion in the study, they won't be getting the results they're looking for, it's going to be more difficult to publish useless results and the next grant will be harder to get.

 

[i.b.nora]

I remember that when the Boston Globe didn't come out with an article as quickly as Lou felt it should, he went to Beau Berman at FoxNews Connecticut with the story. Both did quite a bit of background work before publishing their big articles. And, as I recall both included the episode when BCH was ready to release Justina and arrangements were being made by DCF to place her at the facility very close to their home. That was in June. Lou whined, and threatened lawsuits and well, Justina was not released because of Lou.

 

[jjenny]

He may have complied with the gag order but he did not comply with the plans that would have got Justina closer to the home. He was reportedly abusive and made threats to several people involved in Justina's case. If that's his idea of trying to go along he hasn't got a clue.

As to who, if anybody, lied about Justina's medical condition, we'd need to see her medical records to determine that, don't you think? The word of the Pelletiers is not sufficient evidence imo. It is also possible to make false statements for reasons other than lying, like being mistaken.





Everybody loves a good conspiracy theory but that is nonsense imo. If they want to study somatoform patients but instead recruit subjects who don't have somatoform and don't fulfil the criteria for inclusion in the study, they won't be getting the results they're looking for, it's going to be more difficult to publish useless results and the next grant will be harder to get.

But BCH believes she does have somatoform.

 

[Donjeta]

Innocent people should not have to submit to anything. They did nothing wrong, they aren't child abusers, and the state was in the wrong. All just my opinion.

JMO it is not only about the rights of the parents and what they'd like or wouldn't like to do, it's about what's good for Justina and what will have to be done to get her home.

I think it's probably been pretty clear all along that the fastest way of getting Justina home is not to demonstrate and agitate people on Facebook but to submit to a home investigation and comply with the therapies and visitation arrangements etc. DCF is usually not going to let children go because the parents shout louder and louder but there will be conditions that the parents will have to comply with.

 

[K_Z]

Weighing in on the "conflict of interest" accusations toward the docs at BCH. That is complete baloney, IMO-- and in the opinions of every insurance company, every court of law, and the entire medical and health care profession.

There is categorically NO conflict of interest for an experienced team of psychiatric experts to diagnose a psychiatric condition or illness, at a highly respected tertiary care specialty pediatrics facility! None whatsoever.

There is:
- No specific pharmaceutical agent to treat somatoform disorders
- No medical devices to treat somatoform disorders
- No diagnostic machines or tools to treat somatoform disorders
- No companies with stock offerings related to somatoform disorders
- No proprietary software to diagnose or treat somatoform disorders.
- Poor reimbursement for psychiatric care and treatment
- Probably no significant source of grant money to study somatoform disorders

Psychiatric diagnoses are some of the most poorly reimbursed of all medical diagnoses. There is no "big money" to be made in adolescent psychiatry! There is NO incentive to diagnose and treat a non-existent psychiatric disorder. None. Seriously. None.

Can you imagine how insurance companies would react if patients starting submitting diagnoses and treatments from NON-specialist experts?? How fast can they decline those claims?

Can you imagine a defense attorney in court saying "I object to this expert witness on the grounds that he is clearly a respected expert in his field. What we need here is someone with substantially less knowledge and experience to be an expert witness. Let's hire an unqualified, but handsome celebrity to opine for the court instead." Geesh!!

Quite honestly, Justina's psychiatric illness isn't even really unusual or interesting enough to write up for a professional journal. There are probably thousands of adolescents with somatoform diagnoses that are more severe and refractory than hers, (MOO).

The only thing that makes Justina's case "fascinating", is the extremely bellicose and belligerent behavior displayed so persistently and publicly by her unpleasant parents, IMO. And since it is apparent that BCH psychiatrists are not treating Justina's parents, I highly doubt they would bother writing up such a case (concealing the family's identities) in a case study for a professional journal.

There ARE cases of COI in medicine. Because of COI with pharmaceutical companies funding university research, new rules have been developed at all levels. All health care providers, when giving a talk at a professional conference, must include a statement of who has paid them, and disclose if there are any COI to the audience.

There is NO "conflict of interest" for psychiatric professionals to diagnose and treat patients at a tertiary care pediatric hospital!

This is a good example of why I am a proponent of professional juries for health care litigation.