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

[jjenny]

What is the relevance of BCH diagnosing somebody with mitochondrial disease to Justina's case? From what her parents say, Justina didn't see mitochondrial diseases specialists when she was send to BCH. She went there to specifically see Dr. Flores (a GI specialist who treated her before when he was at Tufts), but instead was seen by a neurology doctor not long out of residency and a psychologist. Who diagnosed her with somatoform quickly and wanted her parents to follow their protocol. Parents were not allowed to seek other opinions.
So while BCH might have doctors diagnosing patients with mitochondrial disease, it doesn't appear they ever examined Justina.

 

[jjenny]

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.


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.

When she arrived to BCH she suffered complications from the flu. Short time prior to that she was in good physical shape including ice skating. Now she is in wheelchair apparently not able to walk. Her hairline is clearly very abnormally receded-I fail to see how it would be possible to pull hair that far back. Especially considering parents are visiting under heavy supervision from DCF.

 

[CHICANA]

There has to be a service plan in place....a road map they need to follow, to get her back.

Apparently, the parents aren't willing to follow it.

Their priority seems to be winning for themselves.
They want to be right more than they want their daughter home.

All IMO




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We don't know that,so it's not apparent to me. I don't see where she was ever in any imminent risk of physical harm at the hands of her parents, so IMO the removal was illegal. What kind of plan are they supposed to have when they can only see her an hour a week? 've seen no indications that they live in a pig sty or that they've ever been abusive to their daughter. What are they supposed to do ?
Apparently the home plan is that they keep their mouth's shut about the corrupt system and the abuse of their daughter by the state,and the parents aren't willing to comply because they know it won't matter anyway and by speaking out their daughter won't die in vain, and yes I think there's a good possibility that she will die because the state and the hospital aren't treating her very real condition.

 

[Donjeta]

When she arrived to BCH she suffered complications from the flu. Short time prior to that she was in good physical shape including ice skating. Now she is in wheelchair apparently not able to walk. Her hairline is clearly very abnormally receded-I fail to see how it would be possible to pull hair that far back. Especially considering parents are visiting under heavy supervision from DCF.

It doesn't sound like such great physical shape to me if she couldn't walk to the school cafeteria. Her hairline is clearly strange but my point is that the photos we have seen are not proof of when, how and why it happened.

 

[BuzzieCat]

This is kind of an interesting article. Sorry if it has already been posted.

http://www.slate.com/articles/healt...ease_boston_children_s_hospital_suspects.html

Media reports suggest that Mark Korson, Pelletier’s doctor at Tufts Medical Center, declined to take a muscle biopsy before diagnosing her with mitochondrial disease. In addition, the doctors at Boston Children’s pointed out that Pelletier’s levels of plasma amino acids and other common blood markers of mitochondrial disease appeared normal.

 

[AnaTeresa]

This is kind of an interesting article. Sorry if it has already been posted.

http://www.slate.com/articles/healt...ease_boston_children_s_hospital_suspects.html

Yes, that sounds odd, but, from the same article:

No single test has proven effective at both detecting mitochondrial disease and ruling it out.

and

This doesn’t mean Korson’s diagnosis was wrong. Patients with mitochondrial disease have extreme difficulty with pain and handle anesthesia poorly, so some doctors avoid muscle biopsies. And not all mitochondrial disorders manifest in blood tests.

 

[jjenny]

It doesn't sound like such great physical shape to me if she couldn't walk to the school cafeteria. Her hairline is clearly strange but my point is that the photos we have seen are not proof of when, how and why it happened.

There are videos of her ice skating some short time prior to being admitted to BCH. Regardless, even if you think she already was not in great physical shape, it certainly doesn't appear that she improved after being removed from her parents and put into the "tender" care of DCF.
So how does that justify her removal? If she isn't getting any better, she should be in her own home instead of a facility that specializes in adolescents with psychiatric and substance abuse issues.
BCH couldn't fix her with their amazing diagnosis of somatoform, could they?

 

[jjenny]

This is kind of an interesting article. Sorry if it has already been posted.

http://www.slate.com/articles/healt...ease_boston_children_s_hospital_suspects.html

There in test for somatoform (what BCH diagnosed her with).
For diagnosis of somatoform, physical issues have to be ruled out first.
Considering the timeline, I fail to see how BCH could have possibly ruled out all the potential physical reasons for her condition.
So diagnosis of somatoform isn't something that can be shown by a test.
To remove her from parents because BCH diagnosed her with something that can not be proven, sounds ludicrous to me.

 

[1&2&3]

I am new to this case. After reading all the posts and news articles, stunned is where I am. My first thought is poor Justina! Sounds like she is at the mercy of an over-powering BCH, who rules DCF, the court system and all who enter their building!

We all know how slow and over worked DCF is reported to be in most states. So, in a city the size of Boston, it is amazing how quickly they respond to a call by BCH! Hmmm . . .

Perhaps I did not read it correctly, or it was not published, there did not seem much evidence against the parents other than doctor shopping and their tempers. On the same hand, there was not much put up to show what good parents they are.

As a parent, I would have been upset over a newly graduated doctor being assigned to my child. Also, not being allowed to see the doctor we had come there to see would cause me distress. And then to give me a sheet of rules that says no second opinions, well, that would cause me to want to take my child out of there!! This is a well renowned hospital, not a jail! Yes, I get it, they had the scope on the parents. However, if that is true, BCH also knew parents had tempers and all of the above would only set them off.

Keeping Justina in a psych ward for so long is pathetic. It sounds like she was kept there because her parents were too stubborn to accept or do anything the judge suggested. In my opinion,the judge's ruling leaves a lot to be questioned!

Bottom line, it seems like two diagnoses for Justina that have no real proof, BCH is so uppity that no one will dare question them, and Justina is the pawn! Sad sad case! Show me proof of allegations of medical abuse by parents?

My thoughts and opinions only.

 

[txsvicki]

When she arrived to BCH she suffered complications from the flu. Short time prior to that she was in good physical shape including ice skating. Now she is in wheelchair apparently not able to walk. Her hairline is clearly very abnormally receded-I fail to see how it would be possible to pull hair that far back. Especially considering parents are visiting under heavy supervision from DCF.

If she did pull it out it will start growing back and show stubble. Daily assessment of the hairline would prove it, I'd think. I don't know what to think. If Justine does not have Mito, then she needed help before more invasive procedures ended up being done. If she does have it, then more damage needs to be prevented to internal organs. Surely the hospital is documenting that her nervous system, brain, and internal organs are normal? If it's just muscles then surely there is some way to prove that nothing is affecting her not being able to walk. It's hard to believe that there is a disorder that can totally disable a person yet shows up in no test.

 

[jjenny]

I am new to this case. After reading all the posts and news articles, stunned is where I am. My first thought is poor Justina! Sounds like she is at the mercy of an over-powering BCH, who rules DCF, the court system and all who enter their building!

We all know how slow and over worked DCF is reported to be in most states. So, in a city the size of Boston, it is amazing how quickly they respond to a call by BCH! Hmmm . . .

Perhaps I did not read it correctly, or it was not published, there did not seem much evidence against the parents other than doctor shopping and their tempers. On the same hand, there was not much put up to show what good parents they are.

As a parent, I would have been upset over a newly graduated doctor being assigned to my child. Also, not being allowed to see the doctor we had come there to see would cause me distress. And then to give me a sheet of rules that says no second opinions, well, that would cause me to want to take my child out of there!! This is a well renowned hospital, not a jail! Yes, I get it, they had the scope on the parents. However, if that is true, BCH also knew parents had tempers and all of the above would only set them off.

Keeping Justina in a psych ward for so long is pathetic. It sounds like she was kept there because her parents were too stubborn to accept or do anything the judge suggested. In my opinion,the judge's ruling leaves a lot to be questioned!

Bottom line, it seems like two diagnoses for Justina that have no real proof, BCH is so uppity that no one will dare question them, and Justina is the pawn! Sad sad case! Show me proof of allegations of medical abuse by parents?

My thoughts and opinions only.

While I agree with most of your post, parents certainly seem like caring parents to me. She was going to a private school for children with special needs while living at home. Had numerous friends, pets, and participated in ice skating. Even though she wasn't particularly healthy, she tried to live as normal life as possible while at home.
So the parents don't appear to be neglectful and tried to do what is best for her.
Now she is in a facility that specializes in adolescents in psychiatric and substance abuse issues, and before that DCF stuck her in secure mental ward.
Yet we are supposed to believe DCF is trying to protect her?
I am sorry but that dog don't hunt.

 

[CathyinTexas]

There are reviews from employees of Wayside about the facility. It is a state facility run health and human services and paid for by the state.



>“Wayside Is NOT On Your Side!”




Residential Care (Former Employee)

Framingham, MA



I worked at Wayside Youth & Family Support Network full-time for more than 3 years

Pros – Looks nice from the parking lot! Some Staff are well educated however they do not hold positions that can make a difference in the program.

Cons – Staff that are hired were not always qualified or appropriate for job requirements. Senior positions were not always honest with care team nor did they value the time, effort and feedback of those working on the floor in residential. Administration totally lacks the ability to effectively communicate with the care teams. This resulting in lack of treatment for clients and in some cases, serious safety and health risks for the clients AND staff!! Their motto should be "Brush it under the rug!" or "Look the other way!" There were several incidents where staff reported mistreatment by fellow staff members towards clients and other staff. Administration had poor tactics on how to deal with these situations nor did they provide a supportive environment for those taking the steps 'to do the right thing" All allegations were said to be "investigated" and proven "untrue". Most of those staff reporting were soon after fired for absolutely ridiculous reasons thus making the top-gun's agenda pretty darn obvious! '

Advice to Senior Management – Reevaluate your priorities as too many corners are being cut in order to save money. Treatment This included staffing issues, both health and recreational supplies not being available and lastly, the facility not being maintained/cleaned for same reasons. Client's treatment plans are not consistent enough. Improvement in clients behavior should show more signs of improvement upon discharge. program should also dedicate more staffing and resources in order to provide life skills education and/ or additional tutoring for academics to client in need . Lastly, wash the rugs and provide the HIPPA regulated supplies to staff in the residence! Several reports by staff mentioned that medical supplies (which included latex gloves) were not always provided in the residence. This made caring for client a safety issue, if able to care for them at all. (not everything can be fixed with a band-aid!)

No, I would not recommend this company to a friend<

http://www.glassdoor.com/Reviews/Wayside-Youth-and-Family-Support-Network-Reviews-E622731.htm

 

[CathyinTexas]

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.


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.

I watched a video where her friend said sometimes she would get sick then go into the hospital for a couple of days for treatment then be back to normal and ice skating. She was getting the right medical treatment and being cared for which she hasn't gotten since DCF took her.

 

[CathyinTexas]

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

The reason to believe it is because the hospital states in their documentation on the site that if a child is a ward of the state the hospital can use them for research. NIH was funding a study by the same psychologist who diagnosed Justina after only spending 25 minutes with her for Somatoform which the grant money was for. The study is long and we know that Justina was in the psych ward for 11 months which is unheard of in normal circumstances. That is not a long time facility, it is a hospital. There are many other children this has happened to. I saw one figure that I can't prove is true, but that BCH files the 51 whatever, and calls DCF in to take custody of pediatric patients at the rate of 400 a year. Children who the hospital has done this to have died, more than one. I believe this happens in other children's hospitals also.

 

[liljim]

the idea that if your condition doesnt improve then the diagnosis must be wrong is not always true for medical conditions and it is true for psychiatric conditions even less so.

there are far too many unknowns (and proven exaggerations) in this case.

there is no evidence that she has been involved in any sort of research and the characterization of the segment of their policies regarding this has been wildly misinterpreted.

hopefully some day we will be able to see a full court record of this case, or at least the results of any formal investigation.

 

[jjenny]

the idea that if your condition doesnt improve then the diagnosis must be wrong is not always true for medical conditions and it is true for psychiatric conditions even less so.

there are far too many unknowns (and proven exaggerations) in this case.

there is no evidence that she has been involved in any sort of research and the characterization of the segment of their policies regarding this has been wildly misinterpreted.

hopefully some day we will be able to see a full court record of this case, or at least the results of any formal investigation.

BCH's policy states that children that are wards of the state maybe included in research. So what exactly has been misinterpreted?

 

[SophieRose]

Originally Posted by BuzzieCat View Post
This is kind of an interesting article. Sorry if it has already been posted.

http://www.slate.com/articles/health..._suspects.html

Yes, that sounds odd, but, from the same article:

No single test has proven effective at both detecting mitochondrial disease and ruling it out.

and

This doesn&#8217;t mean Korson&#8217;s diagnosis was wrong. Patients with mitochondrial disease have extreme difficulty with pain and handle anesthesia poorly, so some doctors avoid muscle biopsies. And not all mitochondrial disorders manifest in blood tests.

So if a muscle biopsy wasn't done was this other test mentioned in the second test done. Seems like some muscle testing would need to be done.

http://mda.org/disease/mitochondrial-myopathies/diagnosis

The most important of these tests is the muscle biopsy, which involves removing a small sample of muscle tissue to examine. When treated with a dye that stains mitochondria red, muscles affected by mitochondrial disease often show ragged red fibers &#8212; muscle cells (fibers) that have excessive mitochondria. Other stains can detect the absence of essential mitochondrial enzymes in the muscle. It&#8217;s also possible to extract mitochondrial proteins from the muscle and measure their activity.

In addition to the muscle biopsy, noninvasive techniques can be used to examine muscle without taking a tissue sample. For instance, a technique called muscle phosphorus magnetic resonance spectroscopy (MRS) can measure levels of phosphocreatine and ATP (compounds that are often depleted in muscles affected by mitochondrial disease).

 

[liljim]

BCH's police states that children that are wards of the state maybe included in research. So what exactly has been misinterpreted?

you are sure that your understanding of it is correct right?

 

[jjenny]

So if a muscle biopsy wasn't done was this other test mentioned in the second test done. Seems like some muscle testing would need to be done.

http://mda.org/disease/mitochondrial-myopathies/diagnosis

The most important of these tests is the muscle biopsy, which involves removing a small sample of muscle tissue to examine. When treated with a dye that stains mitochondria red, muscles affected by mitochondrial disease often show ragged red fibers — muscle cells (fibers) that have excessive mitochondria. Other stains can detect the absence of essential mitochondrial enzymes in the muscle. It’s also possible to extract mitochondrial proteins from the muscle and measure their activity.

In addition to the muscle biopsy, noninvasive techniques can be used to examine muscle without taking a tissue sample. For instance, a technique called muscle phosphorus magnetic resonance spectroscopy (MRS) can measure levels of phosphocreatine and ATP (compounds that are often depleted in muscles affected by mitochondrial disease).

There is no test for somatoform whatsoever, yet BCH claims she has it.

 

[jjenny]

you are sure that your understanding of it is correct right?

Absolutely. You can read Children's policy on wards of the state yourself.