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

[Morag]

Huh? Doesn't look like what?

I was intending to add the comment "she lost weight" to the many untruths spoken by the Pelletiers. I think that Justina looks much more robust now than when she was first admitted. Of course, she's been actually eating for a year or more now that no one in her family is insisting that she can't or won't eat.

 

[CathyinTexas]

I thought we saw a young woman (teen) who has a resilient spirit given all she went through. It is obvious that the entire family is very loving and supportive of each other. They are the ideal family, imo. The girls are doing well in their life, pursuing education and careers. They have not and are not now dysfunctional or on drugs or alcohol. When Linda said she could get no information on what they were "doing" to Justina, and found out from others that she had pneumonia twice and a doctor called her and told her Justina wasn't doing well, it makes it very understandable to me why they were alarmed and believed her to not being doing well but getting worse. If I look at it from all sides of all participants I can see how they might have come to their conclusions in the beginning, but there is NO excuse for Justina to have been treated differently than other children in the hospital or facilities. It was the state that propagated the climate and provoked the parents to behave as they did, in my opinion.

 

[CathyinTexas]

I also found the discussion of the proposed "Justina's Law" a bit disturbing. The proposed law supposedly will cut off federal funding to institutions that carry out experiments on a child without a family's permission. There is no evidence, and no reason to believe, that any experiments were carried out on Justina.

I think Lou articulated his reason for believing that well. It is true that more than one person in the psych unit at BCH specialized and were studying somatoform. As he put it, their pet project. They probably did think she fit the profile. What happened after that was wrong. I think the bill should focus on hospitals being allowed to call in CPS which will always defer to them, in cases like this, to remove a child for them to treat.

 

[sweetmom]

IMO, since we know from various MSM reports and conflicting statements the family has made that they have continually embellished, exaggerated and in some cases flat-out lied about Justina's condition, treatment, time spent in Bader, ER doc's qualifications and other details, I will believe this poor child had pneumonia only if her medical records are released and show it. You cannot take their word for it, IMO.

If she did have it, she has recovered, for which we all are happy.

I would still like to know why, if what Linda told doctors about Justina's odd symptoms of flagging energy, leg weakness, garbled speech, etc. were occurring around the time of the so-called skating competition, why the family let her compete in such a strenuous undertaking.

 

[Linda7NJ]

I couldn't get past the 18 minute mark on the Huckabee show. I'll try to stomach more later...

I know this is silly, but I was cracking up at Justina's now chosen hair style.

Right back to the way it was styled BEFORE they claimed it was receding!

Another silly ploy to mislead the ignorant masses into sending money...IMO



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[CathyinTexas]

Lou said, "a mad psychiatric experiment". Huckabee did not follow up on this nor ask about proof of this claim. (There is not a single ounce of proof that Boston Children's Hospital carried out any experimentation on Justina. IMO)

Linda said Justina had pneumonia twice.

Huckabee had Justina's hand in a death grip for the entire length of the interview (which was about 15 or 20 minutes)

Unfortunately, Huckabee didn't fully allow Justina to answer on her own his best question to her: "What is it you want to do?" She said, right now she wants to be with her family, and with her friends, and then he prodded her into saying she wants to ice skate again.

the freejustina dot com donation site is being changed to savejustina dot com because this whole thing has made it difficult for Lou to work and because (as mentioned above) Linda mentioned Justina's nueropathy of the colon and said they may not be able to use Justina's GI doctor and they may have to go to other hospitals and "pay out of pocket".

And, I would need to watch again but I think the actual interview was done yesterday and was not done in front of a studio audience. I could be wrong.

It was on Saturday before a live audience. I think Mike Huckabee is a warm nice person, and that he was comforting Justina. I doubt many in this forum listened to his opening statements before the show, but it shows he is very astute and he made some good points, imo.

 

[jaunty-girl]

I was intending to add the comment "she lost weight" to the many untruths spoken by the Pelletiers. I think that Justina looks much more robust now than when she was first admitted. Of course, she's been actually eating for a year or more now that no one in her family is insisting that she can't or won't eat.

Ahhh sorry I didn't understand but yes of course, the list of lies/exaggerations is pretty massive. She does indeed look better than the laundry list of symptoms she went in with. She certainly looks better than Lou let on. Good for her, lets hope she can maintain her health, living with the histrionic family.

 

[Linda7NJ]

It was on Saturday before a live audience. I think Mike Huckabee is a warm nice person, and that he was comforting Justina. I doubt many in this forum listened to his opening statements before the show, but it shows he is very astute and he made some good points, imo.

I couldn't disagree with you more.

I'll leave it at that. You all already know my position.

Your welcome


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[CathyinTexas]

Justina...Lou's new meal ticket!

I knew that man didn't want to go back to work. He loves the media attention.

IMO


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I think Lou would like to get back to his career in finance, and probably will. I do believe that was difficult given the time in Boston and Washington advocating for his daughter. He also had to drive there every week to be able to see her 1 hour a week for a year and half.

 

[CathyinTexas]

I never could get the previous video of Justina just after dismissal to play. It's no suprise though, that she is not speaking like a special needs child. She also is not holding her mouth in weird positions in pics. She definitely has something wrong, but I still think it possible that a little bit of the reported symptoms were a big put on in previous pics and videos. I'd love to know if the hospital ever did a sleep study to see if she was flexing legs, bending ankles, putting knees up, etc. during her sleep.

I think she was medicated in the facilities. Most foster kids are. That could have effected her affect and speech. I don't think she sounds like a typical 16 year old. She seems to be a very strong and sweet young lady.

 

[jaunty-girl]

I think she was medicated in the facilities. Most foster kids are. That could have effected her affect and speech. I don't think she sounds like a typical 16 year old. She seems to be a very strong and sweet young lady.

BBM, Do you have any citation or evidence of this? Is this a fact or are you just opining that you believe this to be the case?

 

[annahanna]

I thought we saw a young woman (teen) who has a resilient spirit given all she went through. It is obvious that the entire family is very loving and supportive of each other. They are the ideal family, imo. The girls are doing well in their life, pursuing education and careers. They have not and are not now dysfunctional or on drugs or alcohol. When Linda said she could get no information on what they were "doing" to Justina, and found out from others that she had pneumonia twice and a doctor called her and told her Justina wasn't doing well, it makes it very understandable to me why they were alarmed and believed her to not being doing well but getting worse. If I look at it from all sides of all participants I can see how they might have come to their conclusions in the beginning, but there is NO excuse for Justina to have been treated differently than other children in the hospital or facilities. It was the state that propagated the climate and provoked the parents to behave as they did, in my opinion.

.

HIPAA laws are very explicit and BCH is very strict in following the law. It is highly unlikely that a doctor affiliated with Boston Children's Hospital would break the law by contacting a non-custodial parent, in the middle of a DCF case to reveal protected health information. I am sure that Pelletier supporters will cry "but she is her mother" but the reality is that she did not have custody of her due to her actions and poor behavior and decisions. IMO this is yet another untruth on the part of the Pelletier clan.

 

[PaulaSB]

<modsnip>
Before this happened she was ice skating and walking 16 months later she is confined to a wheel chair THEY MADE her worse not better. She was denied an education for 16 months wasn't even allowed to go to church or speak to friends she was cut off from the world in a way most teens would hate. It was the doctors at her tufts hospital who diagnosed her, her sister has the same disease, the doctor who disagreed is researching somatoform disease saw her for 25 minutes. Also when a child is a ward of state they can be used in research &#8220;Children who are Wards of the state may be included in research that presents minimal risk&#8230;&#8221; It also states: &#8220;Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit&#8230;&#8221;. They where doing what the doctors at Tufts told them to do what where they supposed to do?

 

[jaunty-girl]

Before this happened she was ice skating and walking 16 months later she is confined to a wheel chair THEY MADE her worse not better. She was denied an education for 16 months wasn't even allowed to go to church or speak to friends she was cut off from the world in a way most teens would hate. It was the doctors at her tufts hospital who diagnosed her, her sister has the same disease, the doctor who disagreed is researching somatoform disease saw her for 25 minutes. Also when a child is a ward of state they can be used in research “Children who are Wards of the state may be included in research that presents minimal risk…” It also states: “Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit…”. They where doing what the doctors at Tufts told them to do what where they supposed to do?

These are certainly the talking points they keep parroting, it really has no relation to reality. If you go back just a page or two you will see much of what you've said, has been debunked. Some of the things run contrary to what the family themselves have said.

I am not going to address things I know are lies or hyperbole.

 

[annahanna]

I think Lou articulated his reason for believing that well. It is true that more than one person in the psych unit at BCH specialized and were studying somatoform. As he put it, their pet project. They probably did think she fit the profile. What happened after that was wrong. I think the bill should focus on hospitals being allowed to call in CPS which will always defer to them, in cases like this, to remove a child for them to treat.

It is certainly true that more then one person in the psych department at BCH has authored or coauthored articles on somatoform. However, they have also authored or coauthored articles on autism, bi-polar disorder, Tourette's, and many, many other psych disorders. Somatoform is not a "pet project" at BCH just because Lou Pelletier says so. This is an accurate description of the areas of specialization of the Department of Psychiatry at BCH:

We specialize in helping children and adolescents face disabling troubles with depression, anxiety, inattention and oppositional behaviors as well as those adjusting to stressful and traumatic events. Through our Behavioral Medicine Clinic and related offerings, we have particular expertise helping youngsters coping with physical illnesses&#8212;such as cancer and heart disease&#8212;to manage the strain from lengthy hospital stays, medication regimens and chronic pain.
http://www.childrenshospital.org/centers-and-services/department-of-psychiatry/

Am I misunderstanding you, or are you suggesting that hospitals should not be allowed to call Child Protective Services when they suspect child abuse? <modsnip>

 

[annahanna]

So it wasn't the flu?
- odd movements of her right leg which caused her foot to pronate.
- abnormal movements began to affect the left leg and now the rest of the body is affected.
- increased weakness which cause (sic) her to not be able to walk.
- significant leg pain
- headaches are becoming worse with light and sound
- was speaking gibberish
- experiencing an altered mental status
- not eating
- abnormalities swallowing
- Her mother reports that it was difficult to complete this admission as Justina was not felt to have a known identifiable diagnosis.
- Her other physicians were consulted and it was recommended that she be admitted here at Boston Chidlren's Hospital.

That last two are very interesting.

So we add all this to
- her previous doctors were not consulted
- misinformation on the ER Doctor
- accusations of torture
- teeth were chipped by force feeding her
- comparing the medical staff to Nazis
- her legs being blue
- her being admitted into the psychiatric ward from the ER

What am I forgetting or missing?

Also this goes to the people who keep insisting that she's in worse condition now than she was when she was admitted.

Additional misrepresentations of the truth:
"She has not received an education/schooling"
*The fact is that children in long term hospitalization do receive education through on staff teachers following the lesson plans provided by the child's home school. If the home school fails to provide lesson plans and materials, a plan is developed for the child. This is how education is provided in the Bader 5 unit:
A: Part of the day on Bader 5 is dedicated to school. There are two full-time teachers on the unit, one for grades 1-6 and one for grades 7-12, who will help gather assignments from your child's school so your child can keep up with some schoolwork while on the unit.

"She has not had religious services."
*It is true that Justina was not allowed to leave the hospital to walk down to the local Catholic Church, but there is a Catholic Chaplin at BCH who is available at any time upon request. The hospital previously issued a statement that the priest did visit Justina weekly and that she had not requested additional visits.

 

[jaunty-girl]

Also when a child is a ward of state they can be used in research “Children who are Wards of the state may be included in research that presents minimal risk…” It also states: “Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit…”.

Do yourself a favor and read the entire document.

http://www.childrenshospital.org/~/...pecial_Procedures_for_Wards_of_the_State.ashx

Pay close attention to:

7. It should be noted that parents of children in DCF care or custody may, and most often do, retain the right to consent to participation by their child in any medical or psychological research. However depending on the circumstances, DCF and even court consent may also be required. If the parent(s) has sole legal custody, only parental consent is necessary for the child to participate in a research study. If DCF has sole or joint legal custody and the parent(s) consent, then DCF is likely to consent absent special circumstances. DCF may withhold consent in situations in which parents cannot be located, a petition to terminate parental rights has been granted, a child has been surrendered for adoption, or reasons specific to a family’s or child’s circumstances and needs. If DCF withholds consent based solely on the absence of the family, it may seek judicial approval for the child’s participation; it is unlikely that DCF will permit participation based solely on its administrative consent where a parent who has the right to consent cannot be located.

And all that aside, we still do not have any independent corroboration that any "experimental procedures" were even utilized on Justina. We don't even know if the court was petitioned, which from what I can tell, would be needed to perform, said procedures.

 

[AnaTeresa]

I also found the discussion of the proposed "Justina's Law" a bit disturbing. The proposed law supposedly will cut off federal funding to institutions that carry out experiments on a child without a family's permission. There is no evidence, and no reason to believe, that any experiments were carried out on Justina.

Truly bizarre. I could believe that the hospital perhaps made a mistake in diagnosis and then BCH/DCF dug in their heels rather than admit fault. That's believable to me; it's been seen before.

However, this idea of experimentation is just insane. Perhaps there are unethical experimentation trials done. They've occurred before. But I'm very skeptical that if there is unethical experimentation being done on children without consent, that Justina, with her highly publicized case, would be one of them. Historically, these types of trials are done on people who do not have advocates, for minority populations or those that society has less care for. I'm just not seeing a motive for experimenting on Justina.

The more the Pelletiers talk, the less I believe and the more I am persuaded that DCF may have been in the right with its actions. Sad to say, but this stopped being about Justina a long time ago. I hope she's able to get the care that she truly needs, because this circus is ridiculous.

 

[Donjeta]

As far as I'm concerned the last thing Justina needed to get better was to be on a talk show repeating how horribly she's been treated all this time. This is just about publicity for the parents and not the slightest bit about Justina any more, if it ever was.

Justina's law is just about more publicity and designed to give the impression that she was taken into custody to be unethically experimented on, without providing the slightest bit of evidence that this was the case. The stated reason for taking her into custody was related to the parents' perceived inability to take care of her needs.

 

[Gardenlady]

What's so frustrating is that the document about wards of the state and experimental tx is designed to ALLOW these children to take part in perhaps life saving tx, not FORCE them to be experimented on! :banghead: It is to ensure that possibly disadvantaged wards of state get same access that other patients get I trials/experimental txs.

Instead Lou and the supporters paint it as some sort of conspiracy to conduct Nazi like experiments on patients!


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