Family battling Childrens Hospital to bring teen home for Christmas

jjenny · Apr 22, 2014

Linda7NJ said:
They wouldn't be treating the child for the child's "complex medical condition" as their is no treatment for mito, just a simple cocktail.

They would be treating her for the FLU.
If there was a fear she would choke to death, that can be addressed in any hospital. There was no emergency that required her to be transferred out of state. I'd be willing to bet, she was transferred at the DEMAND of her parents. I'd bet they requested and made a huge stink over it.

All IMO

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You should really read up on mitochondrial disease.
There is no cure. That does not equal no treatment.

Linda7NJ · Apr 22, 2014

jjenny said:
You should really read up on mitochondrial disease.

There is no cure. That does not equal no treatment.

So what super special treatment do you believe she would receive for her flu that required her to be transferred, out of state, during a blizzard, by ambulance?

IV antibiotics and fluids?

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jjenny · Apr 22, 2014

MyBelle said:
The hospitals involved in this case are some of the finest in the world so please stop suggesting one provided best treatment over the other. The facts of this case show the parents seeking a specialist and then totally rejecting an opinion because they didn't agree with it. The ER doc saw this one for what it was as soon as it rolled to the door.

JMO

They came to BCH to see a GI specialist (Dr. Flores) but instead got some doctor short time out of residency.
So you claim they rejected the opinion of a specialist they came to see is totally false.

Donjeta · Apr 22, 2014

jjenny said:
Justina wasn't causing any problems to anyone to begin with.
She is sick, not delinquent.

I didn't say that she is delinquent.

Linda7NJ · Apr 22, 2014

jjenny said:
They came to BCH to see a GI specialist (Dr. Flores) but instead got some doctor short time out of residency.
So you claim they rejected the opinion of a specialist they came to see is totally false.

A GI specialist for the flu?

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MyBelle · Apr 22, 2014

Linda7NJ said:
Wonder if they need the SSI check the mito dx guarantees ?

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I think their gig was up at Tufts.

jjenny · Apr 22, 2014

Linda7NJ said:
So what super special treatment do you believe she would receive for her flu that required her to be transferred, out of state, during a blizzard, by ambulance?

IV antibiotics and fluids?

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Well I don't have an MD. Do you? An ambulance took her. Hospital obviously agreed to send her by ambulance. So what would be your problem here?

Linda7NJ · Apr 22, 2014

jjenny said:
They came to BCH to see a GI specialist (Dr. Flores) but instead got some doctor short time out of residency.
So you claim they rejected the opinion of a specialist they came to see is totally false.

Kudos to the new doc! He nailed it!

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jjenny · Apr 22, 2014

Linda7NJ said:
A GI specialist for the flu?

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Clearly you are not an MD.

Linda7NJ · Apr 22, 2014

jjenny said:
Well I don't have an MD. Do you? An ambulance took her. Hospital obviously agreed to send her by ambulance. So what would be your problem here?

Thud....

I believe the parents insisted ...probably threatened to sue

...if she wasn't transferred!

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Linda7NJ · Apr 22, 2014

jjenny said:
Clearly you are not an MD.

Never claimed to be.

I've read the links you were kind enough to provide.

There is no super secret complicated treatment for the FLU that required an out of state transfer...mito dx or not.

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MyBelle · Apr 22, 2014

Linda7NJ said:
They wouldn't be treating the child for the child's "complex medical condition" as their is no treatment for mito, just a simple cocktail.

They would be treating her for the FLU.
If there was a fear she would choke to death, that can be addressed in any hospital. There was no emergency that required her to be transferred out of state. I'd be willing to bet, she was transferred at the DEMAND of her parents. I'd bet they requested and made a huge stink over it.

All IMO

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BBM. Which is why the ER doc handled it the way he did. The parents really are stoopid if they think hospitals didn't communicate with one another just because they were in different states.

JMO

Linda7NJ · Apr 22, 2014

MyBelle said:
I think their gig was up at Tufts.

Kinda brings into focus a possible financial motive along with the need for attention ...IMO

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jjenny · Apr 22, 2014

MyBelle said:
I think their gig was up at Tufts.

What gig?
Her sister is still treated for mitochondrial disease at Tufts.

Linda7NJ · Apr 22, 2014

I would imagine the request of ALL medical records for this child ....is very telling indeed.

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Linda7NJ · Apr 22, 2014

jjenny said:
Yes, I am sure it is. Parents actually trying to get all of the info out in the open through freedom of information act.

WHAT?

Scratching my head.....

When the parents had custody they had full access of all her medical records. Her entire medical history. Every doctor she ever saw, the notes, etc.
If releasing them would benefit her parents, I believe they would have released them.
It's not like they have any respect for their daughters privacy. IMO

Thankfully HIPPA and the law now prevents them

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MyBelle · Apr 22, 2014

jjenny said:
They came to BCH to see a GI specialist (Dr. Flores) but instead got some doctor short time out of residency.
So you claim they rejected the opinion of a specialist they came to see is totally false.

The ER doctor isn't a concierge. I didn't claim the parents rejected the opinion of the specialist they came to see. An ER doctor is capable of treating the FLU without the need to call in a specialist. A case of FLU doesn't need to be transferred to another hospital. If the specialist the family came to see felt a mistake had been made by the specialist who did examine the child, he would have intervened. Instead, what happened next was to notify authorities about the parents.

JMO

jjenny · Apr 22, 2014

Linda7NJ said:
WHAT?

Scratching my head.....

When the parents had custody they had full access of all her medical records. Her entire medical history. Every doctor she ever saw, the notes, etc.
If releasing them would benefit her parents, I believe they would have released them.
It's not like they have any respect for their daughters privacy. IMO

Thankfully HIPPA and the law now prevents them

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They don't have any information on her treatments after she was removed by DCF.

MyBelle · Apr 22, 2014

jjenny said:
What gig?
Her sister is still treated for mitochondrial disease at Tufts.

Parents can say whatever they want but I'm not required to believe anything they say.

Linda7NJ · Apr 22, 2014

I know when I was referred to another hospital to see a specific specialist, when I got there, he was expecting me!

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Family battling Childrens Hospital to bring teen home for Christmas