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

[Donjeta]

If you ask me, they shouldn't have done it at all.
What right did they have to remove the child to begin with?
Under the law parents have a right to follow the treatment they agree with in case of medical disagreement.
What right did BCH have to demand she follow their treatment instead of Tufts?
Who died and made them God?

Hypothetical question.

Let's say there is a family in which there is medical abuse. Not the Pelletiers, just some random family who is making their kids sick, for real. Someone like Kate Parker. They have managed to fool a number of doctors over the years. For example, Doctor A has been a firm supporter of the family for a long time, believed everything they told him and prescribed all the medicines they asked him to. Then Doctor B starts to suspect something, and finds evidence to support his theory that there is medical abuse. But Doctor A still believes the family. So, there is medical disagreement.

Do you think that Doctor B should just sit back and do nothing to try and protect the child he believes is being abused? Do you think the courts should shrug and ignore the evidence of abuse that Doctor B has found and say, oh well, can't do anything, the parents have the right to follow any course of treatment if there is medical disagreement.

 

[Donjeta]

Another link about physiotherapy being a part of the treatment in mitochondrial diseases.

Treatment of MIDs is based on five main columns, including symptomatic measures, application of supportive agents, dietary measures, physiotherapy, and the avoidance of drugs known to be toxic for mitochondrial functions

http://www.ncbi.nlm.nih.gov/pubmed/19839725

Incidentally, the article discusses drugs that are toxic to mitochondrial function and should be avoided in mitochondrial disease, and beta blockers are mentioned.
Metoprolol, one of the drugs that was reportedly stopped by the new hospital, is a beta blocker.

 

[jjenny]

So in that hypothetical situation, if DCF removed the child, and after more than a year the child is sicker than before, which doctor would be right? In Munchausen by Proxy cases, child should be getting better after removal.
Which has not happened here at all.
Furthermore Munchausen by Proxy cases are subject to criminal investigation.
Hasn't happen here either.
So we are not talking about Munchausen by Proxy case, are we?
Munchausen by Proxy was not an accusation here to begin with. Justina was diagnosed with somatoform by BCH.
Which means BCH claims it's all in her head.

 

[jjenny]

Another link about physiotherapy being a part of the treatment in mitochondrial diseases.


http://www.ncbi.nlm.nih.gov/pubmed/19839725

Incidentally, the article discusses drugs that are toxic to mitochondrial function and should be avoided in mitochondrial disease, and beta blockers are mentioned.
Metoprolol, one of the drugs that was reportedly stopped by the new hospital, is a beta blocker.

She has a heart condition according to her family. So in that case the benefits of beta blocker could very well outweigh the risk. Furthermore, metoprolol actually appears to be protective.
"Metoprolol or PQQ alone enhanced mitochondrial respiratory ratios in ischemic and nonischemic myocardium."

http://www.ncbi.nlm.nih.gov/pubmed/16891289

 

[Donjeta]

So in that hypothetical situation, if DCF removed the child, and after more than a year the child is sicker than before, which doctor would be right? In Munchausen by Proxy cases, child should be getting better after removal.
Which has not happened here at all.
Furthermore Munchausen by Proxy cases are subject to criminal investigation.
Hasn't happen here either.
So we are not talking about Munchausen by Proxy case, are we?
Munchausen by Proxy was not an accusation here to begin with. Justina was diagnosed with somatoform by BCH.
Which means BCH claims it's all in her head.

Again, hypothetically. If she was getting better, how would we know?
The family wouldn't say so since it wouldn't be good for their case and no one else is talking about her medical condition.

 

[Donjeta]

She has a heart condition according to her family. So in that case the benefits of beta blocker could very well outweigh the risk. Furthermore, metoprolol actually appears to be protective.
"Metoprolol or PQQ alone enhanced mitochondrial respiratory ratios in ischemic and nonischemic myocardium."

http://www.ncbi.nlm.nih.gov/pubmed/16891289

That link was about heart infarct in rats, not mitochondrial disease in humans.

 

[CathyinTexas]

The sad truth is, at this point, the child has very little credibility.


Sent from my iPhone using Tapatalk

I would believe her over anyone at this point. Here is a video of Justina weeks before DCF took her into custody skating in a competition. Her friends speak about her also.



https://www.facebook.com/photo.php?v=10151544637568873&set=vb.253343311469595&type=3&theater

 

[CathyinTexas]

I'm having a hard time considering walking in a harness a form of cruel and unusual torture. It's a pretty standard method in physiotherapy when a person is barely able to walk, and physiotherapy is part of the treatment in mitochondrial diseases.

http://www.ncbi.nlm.nih.gov/pubmed/20722626

There is a right way and a wrong way to do things, she may perceive cruelty from them in the way they go about it, especially the verbal and mental abuse it seems she is subjected to. The fact she has been literally incarcerated and lost her civil rights of attending school, socializing with her friends, going on field trips, go to church (which she may get to do on Easter for the first time since this started) may be why she complains. Wouldn't you? She has never done anything to warrant it. She was in a hospital psych unit for at least 10 months! Who is paying for it? Not the insurance company for sure. It is the tax payers, and NIH who is funding the studies which they used her for, in my opinion. How could anyone think that is alright? The fact that the public is indifferent or in denial about what is occurring here to her and others is the reason it goes on and will get worse until everyone will be effected in some way in the future.

 

[Elley Mae]

Dr. Korson, Chief of Metabolic Services at Tufts Medical Center, was Justina’s primary physician who was treating her for Mitochondrial disease. Instead of allowing Justina to see Dr. Flores, Justina saw Dr. Jurriaan Peters, a BCH resident only seven months out of medical school. He brought in Dr. Simona Bujoreanu, a psychologist who coauthored an article in which she contends that in up to 50% of children who present with physical complaints, the complaints are not physical but mental.

http://canadafreepress.com/index.php/article/62409

bbm This is so disturbing on so many levels. Will she be allowed to leave when she turns eighteen.?

 

[CathyinTexas]

If you ask me, they shouldn't have done it at all.
What right did they have to remove the child to begin with?
Under the law parents have a right to follow the treatment they agree with in case of medical disagreement.
What right did BCH have to demand she follow their treatment instead of Tufts?[/QUOTE

While we were sleeping over the years, laws were passed making this possible and it happens all the time. Why don't we hear about it? It is because of gag orders and fear of parents, until it is too late. The perpetrators being protected from privacy laws and not accountable in the least bit. Every parent should be concerned. If it were to happen to you or a loved one, would anyone believe you if you said it was kidnapping, they have no right to do this? Maybe Justina's case may prompt laws to be passed to protect parents from this happening again, but with the public's apathy, and even support of it, it is doubtful.

 

[jjenny]

That link was about heart infarct in rats, not mitochondrial disease in humans.

You own link that you provided states some of the drugs listed are actually beneficial.

 

[jjenny]

Again, hypothetically. If she was getting better, how would we know?
The family wouldn't say so since it wouldn't be good for their case and no one else is talking about her medical condition.

Well I can just look at her recent photos. I do have two eyes.

 

[jjenny]

I would believe her over anyone at this point. Here is a video of Justina weeks before DCF took her into custody skating in a competition. Her friends speak about her also.



https://www.facebook.com/photo.php?v=10151544637568873&set=vb.253343311469595&type=3&theater

There was also no allegations made about her credibility. So I find that statement made by linda to be bizarre to say the least.

 

[CathyinTexas]

Another link about physiotherapy being a part of the treatment in mitochondrial diseases.


http://www.ncbi.nlm.nih.gov/pubmed/19839725

Incidentally, the article discusses drugs that are toxic to mitochondrial function and should be avoided in mitochondrial disease, and beta blockers are mentioned.
Metoprolol, one of the drugs that was reportedly stopped by the new hospital, is a beta blocker.

In any medical treatment, there can be side effects, it is a risk/benefit scenario. Justina has a heart problem, and they addressed that with Metroprolol. In her case, they seem to think the benefit outweighs the risk. A neurologist or a psychologist is not qualified to diagnose and treat a metabolic disorder, in my opinion.

 

[CathyinTexas]

Again, hypothetically. If she was getting better, how would we know?
The family wouldn't say so since it wouldn't be good for their case and no one else is talking about her medical condition.

It's evident from the pictures the parents have managed to sneak out that she is getting worse. The DCF finally took her to the specialist that treated her for her medical condition. They are guilty of medical neglect at the very least. I hope they will be held accountable. They don't care about this child at all.

 

[CathyinTexas]

This is interesting and may explain what is going in this case, especially why the DCF seemed to ignore what the judge ordered in the beginning of Justina's case.

https://www.youtube.com/watch?v=wYTNzT4QmM8

 

[Linda7NJ]

There is a right way and a wrong way to do things, she may perceive cruelty from them in the way they go about it, especially the verbal and mental abuse it seems she is subjected to. The fact she has been literally incarcerated and lost her civil rights of attending school, socializing with her friends, going on field trips, go to church (which she may get to do on Easter for the first time since this started) may be why she complains. Wouldn't you? She has never done anything to warrant it. She was in a hospital psych unit for at least 10 months! Who is paying for it? Not the insurance company for sure. It is the tax payers, and NIH who is funding the studies which they used her for, in my opinion. How could anyone think that is alright? The fact that the public is indifferent or in denial about what is occurring here to her and others is the reason it goes on and will get worse until everyone will be effected in some way in the future.

I'm not in denial.
I simply do not have enough information nor am I medically qualified to come to any conclusion 100%




Sent from my iPhone using Tapatalk

 

[Donjeta]

Well I can just look at her recent photos. I do have two eyes.

It is worth remembering that photos are only a snapshot of a moment in time and can be misleading if selectively released. There are happy photos of many abused children and unhappy bruised photos of many children that are well taken care of and you could easily get the wrong idea if photos are chosen to create a particular impression.

Say, we have seen photos of Justina iceskating prior to being admitted to Children's and now we see her in a wheelchair, barely able to walk. Oh, she must have gotten so much worse. But apparently at times she was barely able to walk even before she was taken in DCF custody. However, we haven't seen any photos of her being unable to walk to the school cafeteria.

When her mounting fatigue made it too difficult for her to walk several hundred yards to the cafeteria, her friends took turns eating with her in a classroom.

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

We have seen photos of her with a bald patch and it looks scary but it could be emphasized by the hairstyle that is severely pulled back. I could have missed some before- photos that show the hairline clearly but in many of them she either has a hat on and you can't see the hairline at all or her hair is combed across her forehead and some of it potentially could be hiding a pre-existing bald spot.


Just playing devil's advocate here. She may indeed have gotten a great deal worse but photos don't prove that.

 

[Donjeta]

There is a right way and a wrong way to do things, she may perceive cruelty from them in the way they go about it, especially the verbal and mental abuse it seems she is subjected to. The fact she has been literally incarcerated and lost her civil rights of attending school, socializing with her friends, going on field trips, go to church (which she may get to do on Easter for the first time since this started) may be why she complains. Wouldn't you? She has never done anything to warrant it. She was in a hospital psych unit for at least 10 months! Who is paying for it? Not the insurance company for sure. It is the tax payers, and NIH who is funding the studies which they used her for, in my opinion. How could anyone think that is alright? The fact that the public is indifferent or in denial about what is occurring here to her and others is the reason it goes on and will get worse until everyone will be effected in some way in the future.

Is there some reason to think that she was taken into DCF custody to become a research subject?

 

[i.b.nora]

I saw this woman (Kristine Biagiotti) interviewed on one of the morning shows last week. What caught my attention was the fact that the daughter had been diagnosed with mitochrondial disease at a very young age by doctors at Boston Children's Hospital and she has been treated there ever since.

Here is just one article about them. It is from LAST YEAR (2013):

http://www.milforddailynews.com/x19...-daughter-duo-to-make-Marathon-history/?tag=1

Mendon mother-daughter duo to make Marathon history
By Jessica Trufant/Daily News staff
Posted Apr. 13, 2013 @ 12:01 am

... snip ...

"But it will be different on Monday when Biagiotti runs the Boston Marathon, as she will have her daughter, Kayla, right there with her every step of the way – making them the first mother-daughter team in the race’s 117-year history."

"Kayla, 18, suffers from mitochondrial disease, which results from failure of the mitochondria, or compartments in every cell of the body except red blood cells that generate energy."

"The disease can cause a slew of problems, including loss of motor control, muscle weakness and pain, developmental delays and respiratory complications.
"We were in the hospital a lot in her first five years of life, and at one point the doctors basically said there wasn’t much hope with the infection she had," Biagiotti, 46, said Friday. "But Kayla was a fighter, and I attribute her health to the care she received at Boston Children’s Hospital.""

More...

~ ~ ~

This brief audio interview + large labeled photo from The New York Times, because they were near the finish line when the bombs exploded:

http://www.nytimes.com/interactive/2013/04/22/sports/boston-moment.html?_r=0

~ ~ ~

And, this from NYDaily News about a CNN Special this year:

"Another tale told on the special is that of Kristine Biagiotti, who can be seen in pictures from the day pushing her 18-year-old daughter Kayla, riding in her custom wheelchair, across the finish line as smoke billows near them.

Biagiotti and the teen, who suffers from a mitochondrial disease, were officially the second-to-last finishers of the race, and the first mother-daughter team to complete the marathon in its 117-year history.

“They made history that day — but it was completely lost in the chaos,” Lombardo said."

Read more: http://www.nydailynews.com/entertai...boston-attack-article-1.1753709#ixzz2z4C3yJ94

~ ~ ~

This is an article from 2012 about the raising of funds for the special wheelchair:

http://www.cutimes.com/2012/10/05/helping-fulfill-a-dream

Helping Fulfill a Dream
October 05, 2012

... snip ...

"The Credit Unions Kids at Heart program – comprising area credit unions that raise funds for Boston Children’s Hospital – sponsored the Biagottis. Kayla Biagiotti has been treated there since birth for mitochondrial disease — a chronic, genetic disorder that affects the production of cells."

More...

~ ~ ~

Maybe The Pelletiers (Mom, Pop, and the kids) will all be able to run in the Boston Marathon next year.