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

[jjenny]

Can you at least acknowledge that the parents are only one side of the story? And that BCH, by law, can't release anything to the contrary?

Court documents have been released, the treatment plan prescribed by BCH has been released, photos of Justina with receding hairline and in wheelchair have been released. Statements that her doctor in Tufts and her psychologist made have been released.
So it's not like she is running around but her parents claim she is in wheelchair.
There is a whole lot of supporting information.

 

[MyBelle]

The difference is ....the drug users and abusers jumped through a few hoops. They had a few clean urine drops and worked their case plan.


Sent from my iPhone using Tapatalk

The choice to play by DCF rules rests with the parent. Drug users who refuse to provide their children with proper medical care will not be regaining custody of their children any time soon.

 

[i.b.nora]

I wonder why Lou isn't touting the fact that Justina was taken to Tufts last week for an appointment with Dr. Korson?

 

[jjenny]

I wonder why Lou isn't touting the fact that Justina was taken to Tufts last week for an appointment with Dr. Korson?

Actually he is. He talked about it repeatedly.

 

[forthelost]

She couldn't walk when she came to BCH, according to the Globe article. And also according to the Globe article, she had periods of time when she couldn't even walk to the school cafeteria. It's not like she was running around before she went to BCH.

Why did they go to BCH in the first place, anyway, for an emergency case? Why not Yale-New Haven, which is much closer?

 

[jjenny]

She couldn't walk when she came to BCH, according to the Globe article. And also according to the Globe article, she had periods of time when she couldn't even walk to the school cafeteria. It's not like she was running around before she went to BCH.

Why did they go to BCH in the first place, anyway, for an emergency case? Why not Yale-New Haven, which is much closer?

She had the flu and complications from the flu when she went to BCH. Just some weeks prior she was ice skating.
The reason she went to BCH is because Dr. Flores who previously treated her moved there. She went there to specifically see Dr. Flores. She didn't get to see him, however.
She ended up in neurology instead of gastroenterology (where Dr. Flores works).
She might have had periods where she had trouble walking, when she lived at home.
But now it appears she is in wheelchair all the time.

 

[i.b.nora]

Actually he is. He talked about it repeatedly.

Link please? And, please not to the self serving press releases from all the different groups he is associating with.

 

[jjenny]

Link please? And, please not to the self serving press releases from all the different groups he is associating with.

Then you are out of luck.
Does it matter who releases it if it's video or audio of him talking?

 

[MyBelle]

Because parents refused to follow protocol prescribed by BCH and wanted to follow a protocol prescribed by Tuft's. That should not be a ground for removal of the child.

Baloney. There was no different protocol. It was the Tuft's doctor who sent the child to see the gastroenterologist at BCH. If there was already a protocol to follow, he wouldn't be sending the child to another specialist. Lack of parental common sense to the point it endangers a child's health has always been grounds for removal from parents. The child arrived at BCH in an ambulance NOT by figure skating across Boston.

 

[forthelost]

The Globe article says that her mother was afraid she would choke to death. If the situation is that dire, why go three hours away when a world-class hospital is in the immediate area? If she needed specialized treatment at BCH she could have been transfered once she was stabilized.

edit: I will admit it is entirely possible (although I think it's unlikely) that the parents are right about her condition and treatment required. However, without the medical records, which I legally can't see, I can't tell that. Do you think it is at all possible that BCH might be right about something?

 

[jjenny]

Baloney. There was no different protocol. It was the Tuft's doctor who sent the child to see the gastroenterologist at BCH. If there was already a protocol to follow, he wouldn't be sending the child to another specialist. Lack of parental common sense to the point it endangers a child's health has always been grounds for removal from parents. The child arrived at BCH in an ambulance NOT by figure skating across Boston.

She was send to a GI specialist because that same specialist previously treated her at Tuft's but moved to BCH.
So I have no idea as to what you are calling baloney.
Child had complications from flu when she arrived at BCH by ambulance.
Again, because her doctor at Tufts (Dr. Korson) wanted her to see the same specialist (Dr. Flores) she had seen while treated at Tufts. But Dr. Flores moved from Tufts to BCH, so she was send to BCH.

 

[jjenny]

The Globe article says that her mother was afraid she would choke to death. If the situation is that dire, why go three hours away when a world-class hospital is in the immediate area? If she needed specialized treatment at BCH she could have been transfered once she was stabilized.

edit: I will admit it is entirely possible (although I think it's unlikely) that the parents are right about her condition and treatment required. However, without the medical records, which I legally can't see, I can't tell that. Do you think it is at all possible that BCH might be right about something?

Maybe parents wanted her to be seen by the same doctor who treated her before, no? Apparently they trusted Dr. Flores when Dr. Flores treated her at Tuft's. But Dr. Flores moved to BCH.
How does that justify in any way DCF removing her?

Let's say for the sake of the argument Justina actually has somatoform (BCH is right).
What is the point of having this diagnosis if her condition hasn't improved after being treated for it?
She certainly doesn't appear to be much improved.

What if BCH is wrong? Then she has been denied treatment for mitochondrial condition for over a year.
Mitochondrial disease can actually be lethal. So how would that be good for her?

 

[forthelost]

It was also apparently an emergency. If BCH was the closest and best hospital I'd see the point of going that far, but there's several great hospitals in that area of Connecticut. Why go that far? (Tufts is of course in Boston too, but she wasn't brought there on an emergency basis.)

 

[Gardenlady]

it is not uncommon to have a patient finally get correctly diagnosed and they then reject that diagnosis and get markedly worse.

an eating disorder situation would be a very typical example of this.

BCH still could be wrong about this case, i dont know. but anyone convinced that there is no possible scenario where BCH may be right is imo misinformed. grossly.

In regards to your first paragraph - I have seen this happen with quite a few diabetic patients - mostly young (teens and 20s) type 1 diabetics. In fact, teens will often rebel by not putting any effort into working on monitoring their condition and adjusting insulin, etc. or they go into complete denial until they end up hospitalized.

 

[forthelost]

How does that justify in any way DCF removing her?

If they want her treated for a condition she does not have (and while it's possible she has it, there's no definitive test results that she does; she was diagnosed based on symptoms alone) then that does justify them removing her.

 

[jjenny]

If they want her treated for a condition she does not have (and while it's possible she has it, there's no definitive test results that she does; she was diagnosed based on symptoms alone) then that does justify them removing her.

So DCF removed her to be treated for a condition (somatoform) for which there is no test? There is no definite proof she has somatoform. Diagnosis is based on not even symptoms, but exclusion of other possible reasons.
And that justifies DCF removing her?

 

[forthelost]

Let's say for the sake of the argument Justina actually has somatoform (BCH is right).
What is the point of having this diagnosis if her condition hasn't improved after being treated for it?
She certainly doesn't appear to be much improved.

Somatoform conditions are very difficult to treat. If the person isn't getting treatment for the emotional issues (or denies they exist altogether) they won't go away. And the media hubub about all this can't be good for a possible somatoform case either.

What if BCH is wrong? Then she has been denied treatment for mitochondrial condition for over a year.
Mitochondrial disease can actually be lethal. So how would that be good for her?

It wouldn't. It is possible they are wrong. But I can't say that with any certainty, since I can't see her medical records.

 

[forthelost]

So DCF removed her to be treated for a condition (somatoform) for which there is no test? There is no definite proof she has somatoform. Diagnosis is based on not even symptoms, but exclusion.
And that justifies DCF removing her?

It's a rule out condition. It's possible, once again, they are wrong. It's also possible that once a bunch of other tests came back negative they started to suspect somatization.

Is there any way you can think of that BCH is right? At all? Because if you don't, there's really no point to this conversation, as nothing will change your mind.

 

[jjenny]

Somatoform conditions are very difficult to treat. If the person isn't getting treatment for the emotional issues (or denies they exist altogether) they won't go away. And the media hubub about all this can't be good for a possible somatoform case either.



It wouldn't. It is possible they are wrong. But I can't say that with any certainty, since I can't see her medical records.

You do understand that there is no actual proof she has somatoform, or don't you? No test for it. No physical evidence she has it.
So, again, how that justifies DCF removing her from her parents?

 

[MyBelle]

Link please? And, please not to the self serving press releases from all the different groups he is associating with.

the self-serving press releases are a result of a parental addiction to attention.

JMO