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

[jjenny]

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.

Nobody is making anyone to converse with me.
What is the point of having this diagnosis if the treatment hasn't improved her condition? If treating or not treating for it makes no difference, how does it justify DCF removing her from her parents?

 

[forthelost]

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?

If she does not have mitochondrial disorder, treating her with the drugs used to treat it will not help her. If her parents will only accept that as a diagnosis, and she doesn't have it, that is endangering her welfare.

I'll ask again. Is there any way that BCH could be right in this case, in your mind? Yes or no.

 

[forthelost]

What is the point of having this diagnosis if the treatment hasn't improved her condition? If treating or not treating for it makes no difference, how does it justify DCF removing her from her parents?

If she does not have mitochondrial disorder, treating her with the drugs used to treat it will not help her. If her parents will only accept that as a diagnosis, and she doesn't have it, that is endangering her welfare.

Treatment hasn't cured my depression, either, but that doesn't mean I shouldn't be treated at all for it.

 

[i.b.nora]

Justina and her mother actually went to Boston Children's in an ambulance from Connecticut Children's Medical Center (which had done the cecostomy in April of 2012) at 1 am Sunday night/Monday morning arriving 3 hours later at about 4 am at Boston Children's.

Lou and Linda have not made it clear, if she was in the Hartford hospital that weekend or that night for treatment for choking, or if they drove her there from their home five miles away so she could get an 'insurance paid for' ambulance trip. Remember, it was a nasty weather weekend, big blizzard in New England. Lou made it very clear that they had used the ambulance so that INSURANCE would pay for it.

Anyhow, they have failed to make it totally clear as to who suggested that they should call Korson in Boston and why she couldn't be treated for what seemed to be a medical emergency at Hartford which also has records on Justina.

 

[i.b.nora]

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

If you have links to a ton of videos or audios with Lou in his own words touting the doctor visit that would be fine. Thanks in advance.

 

[MyBelle]

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?

She didn't need to go to BCH at all. I'm pretty sure Tufts has at least one gastroenterologist on its staff who could have offered a consultation. I think the parents wanted a specific doctor and that was that. Sending her in an ambulance to another hospital was way over the top if she wasn't acutely ill.

 

[MyBelle]

If she does not have mitochondrial disorder, treating her with the drugs used to treat it will not help her. If her parents will only accept that as a diagnosis, and she doesn't have it, that is endangering her welfare.

I'll ask again. Is there any way that BCH could be right in this case, in your mind? Yes or no.

Good luck with that.

If she does have mitochondrial disorder, they would continue treating it while also treating her underlying psych disorder.

 

[momrids6]

If she does not have mitochondrial disorder, treating her with the drugs used to treat it will not help her. If her parents will only accept that as a diagnosis, and she doesn't have it, that is endangering her welfare.

I'll ask again. Is there any way that BCH could be right in this case, in your mind? Yes or no.

There are no drugs for mitochondrial disorder. It is treated symptomatically. There is only the "mito cocktail"- a mix of vitamin and mineral supplements that boost the immune system and clear oxidants.

 

[MyBelle]

Justina and her mother actually went to Boston Children's in an ambulance from Connecticut Children's Medical Center (which had done the cecostomy in April of 2012) at 1 am Sunday night/Monday morning arriving 3 hours later at about 4 am at Boston Children's.

Lou and Linda have not made it clear, if she was in the Hartford hospital that weekend or that night for treatment for choking, or if they drove her there from their home five miles away so she could get an 'insurance paid for' ambulance trip. Remember, it was a nasty weather weekend, big blizzard in New England. Lou made it very clear that they had used the ambulance so that INSURANCE would pay for it.

Anyhow, they have failed to make it totally clear as to who suggested that they should call Korson in Boston and why she couldn't be treated for what seemed to be a medical emergency at Hartford which also has records on Justina.

iow, it was a case of fraud. Using an ambulance and going out of state are two HUGE red flags to the Boston hospital ER. Insurance won't pay for hospital "shopping" just as it won't pay for doctor shopping.

 

[jjenny]

If she does not have mitochondrial disorder, treating her with the drugs used to treat it will not help her. If her parents will only accept that as a diagnosis, and she doesn't have it, that is endangering her welfare.

Treatment hasn't cured my depression, either, but that doesn't mean I shouldn't be treated at all for it.

She was diagnosed with mitochondrial condition by a reputable physician.
Give me one good reason why her parents shouldn't accept that as a diagnosis but accept a different one instead.
By law parents get to decide which diagnosis to accept in case of medical disagreement.

 

[jjenny]

Justina and her mother actually went to Boston Children's in an ambulance from Connecticut Children's Medical Center (which had done the cecostomy in April of 2012) at 1 am Sunday night/Monday morning arriving 3 hours later at about 4 am at Boston Children's.

Lou and Linda have not made it clear, if she was in the Hartford hospital that weekend or that night for treatment for choking, or if they drove her there from their home five miles away so she could get an 'insurance paid for' ambulance trip. Remember, it was a nasty weather weekend, big blizzard in New England. Lou made it very clear that they had used the ambulance so that INSURANCE would pay for it.

Anyhow, they have failed to make it totally clear as to who suggested that they should call Korson in Boston and why she couldn't be treated for what seemed to be a medical emergency at Hartford which also has records on Justina.

Her cecostomy was actually done at Tuft's, not CT children's. Where does all this concern about a cost for an ambulance is coming from?
Considering MA DCF likely spend million or more to keep her in custody?

 

[jjenny]

She didn't need to go to BCH at all. I'm pretty sure Tufts has at least one gastroenterologist on its staff who could have offered a consultation. I think the parents wanted a specific doctor and that was that. Sending her in an ambulance to another hospital was way over the top if she wasn't acutely ill.

She wanted to see her own GI specialist who knew about her issues and treated her before. I didn't realize that is now a crime.

 

[i.b.nora]

You're right. I stand corrected. The cecostomy was performed at Tufts in April of 2012. It was performed by the Chief of Surgery, assisted by the Dr. Flores.

It was the exploratory surgery which led to the appendectomy and the discovery of the congenital band that was done at the Hartford Medical Center, 5 miles from their home in 2010. The same hospital they took the ambulance from in the wee hours of the night in the middle of the ferocious blizzard in order to get her to Boston Children's, lest she choke to death.

And, actually it was Lou that pointed out that they specifically did it all in such a way as the ambulance trip would be paid for by insurance. I called attention to what he himself said because I thought it was interesting. Feel free to disregard it if you like.

 

[jjenny]

Insurance can decide to pay for it or not.
They have special people for approving or disapproving a claim.
As I am not one of those people, I really don't care about her ambulance bill.

 

[MyBelle]

She was diagnosed with mitochondrial condition by a reputable physician.
Give me one good reason why her parents shouldn't accept that as a diagnosis but accept a different one instead.
By law parents get to decide which diagnosis to accept in case of medical disagreement.

BBM. There is no law that allows parents to intentionally endanger their children by refusing to accept a diagnosis. The parents in this case delivered their child to an ER via ambulance and then decided to leave because they didn't like what they were told. A hospital isn't a hotel. The hospital followed the law to a "T."

 

[MyBelle]

Her cecostomy was actually done at Tuft's, not CT children's. Where does all this concern about a cost for an ambulance is coming from?
Considering MA DCF likely spend million or more to keep her in custody?

Where does all this concern about a cost for an ambulance coming from? Probably the same taxpayers concerned they are now picking up the tab for the parents' negligence. People who con the system usually have no problem with taxpayers picking up the tab. It's always somebody else's fault.

JMO

 

[jjenny]

BBM. There is no law that allows parents to intentionally endanger their children by refusing to accept a diagnosis...

Even if she actually has somatoform? How does parents refusing to accept it endanger her?
Can it be cured? Can it be treated? Did she get any better after being treated for it for over a year now?
So what good does this diagnosis do?
And by the way, it's usually not an impatient treatment. People don't normally get locked up in secure psychiatric hospitals for it.

 

[Linda7NJ]

When I first began following this case, I had one opinion...then as more information became available... I hopped on the fence....
Now ...I am completely and firmly on the side of the court, children's and DCF.

Sometimes, taking a deep breath and actually considering the other side brings about new opinions.

Those parents are their own worst enemy. They too would benefit from some deep reflection, soul searching and put their daughter first.

All IMO



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[MyBelle]

She wanted to see her own GI specialist who knew about her issues and treated her before. I didn't realize that is now a crime.

She wanted? More likely, her Mommy wanted, imo. I've never believed the story that it was the doctor at Tufts who referred them to BCH. Hospitals don't work that way and neither does insurance. It's a crime if it involves insurance fraud and I believe that is exactly what is going on in this case. Mommy and Daddy crave attention.

I'm betting all the arm-flapping being done now is a direct result of their insurance carrier refusing to pay for the ambulance and possibly for any care provided by BCH.

JMO

 

[forthelost]

She was diagnosed with mitochondrial condition by a reputable physician.
Give me one good reason why her parents shouldn't accept that as a diagnosis but accept a different one instead.
By law parents get to decide which diagnosis to accept in case of medical disagreement.

Without the medical records, I can't tell you that.

Is there any way BCH could be right about anything in this case? Yes or no.