Family battling Children’s Hospital to bring teen home for Christmas #2

[Linda7NJ]

I read through this thread and see some good points made. The implication in some of the statements though is that the doctors want to CYA, so much so that even if parents respect them and listen to them, they want to opt out. That doesn't sit right with me. I can't see that any ambulance would transport a patient from one state to another in the middle of snowstorm without medical authority directing them to do so. It is preposterous to think parents could call an ambulance to do that. I agree that Lou and Linda may have assumed or were mistaken that she would be a direct admit to the GI floor. It is also possible that the conservation with Dr. Korson led them to believe that for some reason. What is obvious is they were very loving parents willing to do that for their daughter.

The only thing obvious to me is that Lou loves media attention and has political aspirations. The platform he's chosen to stand on...is his own daughter. That's his priority. Not getting Justina home, where he claims she belongs.
He alone is the obstacle preventing reunification.
IMO

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[Donjeta]

He did state in an interview hundreds of parents have contacted him about their child being taken in the same way, and he does see this as a mission for him in the future. Helping others. Righting wrongs. His reasons for being coming a politician are just.

I'd be willing to bet that most of the time Lou has no way of knowing those parents who contacted him are telling him the whole truth and nothing but the truth and that there was no justified reason for their children being taken.

Lots of people who had their children taken away for abuse or neglect complain loudly.

 

[jjenny]

FWIW, I didn't get the impression that the reason for those doctors wanting to sign out is that the parents trust and respect them, rather that the doctors see warning signs that the parents are doctor shopping and trying to manipulate the Chosen One.

Trusting and listening to your children's doctor is the usual desirable state I think, the problem is more that they reject everybody else's opinions out of hand, however well founded they might be. It's not really normal to imply that there is only one competent doctor in this world and it may be a sign that this is the only doctor out of many who said what the parents want to hear and didn't tell them any unpleasant truths they need to hear, or that the parents think that they'll be able to hoodwink this doctor for one reason or another.

So the parent has to get a second opinion and then decide? Is that it? I thought we were against "doctor shopping?" If parent tells the doctor "I want to follow your directions" but the doctor wants to "sign out" after that, doesn't that imply doctor isn't even confident in his/her own directions?

 

[Linda7NJ]

This has become a polarized case to the extreme. The news reported hundreds but there were 2000 plus there. It is clear from the numbers that many see it as Lou does and want to do see changes made so it can't happen to other families. He is being encouraged to act as he does by others who see parents rights eroding. The Pelletiers had a right to take Justina to another facility. It made sense to take her back to Tufts where she was treated before BCH. Their critics seem to refuse to see that a psychologist and psychiatrist who instigated the involvement of DCF were both invested in the Somatoform disorder by peer reviewed studies, authoring text books and receiving grant money for the disorder studies which clearly is a conflict of interest, and a motive to do what they did. There is no defense or excuse for the treatment of Justina from that time forward in my opinion.

I am never shocked by the number of people that lack critical thinking skills and blindly follow the word of others.
Despite abundant proof to the contrary.


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[jjenny]

I am never shocked by the number of people that lack critical thinking skills and blindly follow the word of others.
Despite abundant proof to the contrary.


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Except when BCH tells you that you have to treat your child for somatoform. Isn't that right?

 

[sweetmom]

I told ya, he's gonna run for office lol! It's not about his daughter now, even if it once was. He's gonna ride his hobby horse to the local elections! :crazy:


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If he plans to start locally, he will have to move somewhere else. I live in the same town and can tell you that it is solidly Democratic/Progressive, with a long history of rejecting extremist views. Even the Republicans on our town council are pretty much old-school good-government New England types: they would pass for Democrats anywhere else.

Also, there have been no town-wide rallies or other large events to support the family's point of view and only a few letters to the editor taking their side, either.

And it is too late in the CT political cycle this year for him to launch any kind of statewide attempt at being elected to...anything. By the time the next round of elections happens, I suspect the Pelletier case will be largely forgotten...the way the Terry Schiavo case has been.

 

[annahanna]

K_Z was not saying that some doctors want to sign out of cases where the parents like and trust them. Obviously part of the goal of physicians is to establish a relationship of trust and respect. What he was talking about is parents who develop almost groupie like behaviors. "You are the ONLY doctor..." or "I ONLY trust you...." or "I won't allow any other doctor ..." or "No one else understands my child's problem like you do." I have been around parents like that in the past and honestly it is a bit creepy and weird in the slavish devotion to one particular doctor. It tends to set alarm bells ringing not just in doctors and medical staff but in other parents as well.

 

[jjenny]

K_Z was not saying that some doctors want to sign out of cases where the parents like and trust them. Obviously part of the goal of physicians is to establish a relationship of trust and respect. What he was talking about is parents who develop almost groupie like behaviors. "You are the ONLY doctor..." or "I ONLY trust you...." or "I won't allow any other doctor ..." or "No one else understands my child's problem like you do." I have been around parents like that in the past and honestly it is a bit creepy and weird in the slavish devotion to one particular doctor. It tends to set alarm bells ringing not just in doctors and medical staff but in other parents as well.

How many doctors do you expect the child should have?

 

[annahanna]

I can't see that any ambulance would transport a patient from one state to another in the middle of snowstorm without medical authority directing them to do so. It is preposterous to think parents could call an ambulance to do that.

You are correct that an emergency ambulance would not do that. A medical transport service would though. They will take a person in need of medical transport just about anywhere that you are willing to pay them to go - doctor's appointments, physical therapy, across state lines to the hospital of your choice. These transport services look like ambulances and some are fully functional ambulances. Most people call them ambulances. Since the transport did not take Justina to the nearest hospital that could care for her, (in the middle of the night in a snowstorm) I have to assume that it was a private (not city/county underwritten) medical transport service.

 

[annahanna]

How many doctors do you expect the child should have?

A healthy child generally has one. A child with significant medical issues may have 2 or a handful - or more. My child has 7 that we see on a routine basis and a number that we no longer need but who would jump in if needed or while my kiddo was hospitalized in their city. All of our doctors talk to each other and keep each other up to date on my child's current medical condition. They are all good at communication but one of the best at coordinating care is at Boston Children's. I like and respect each of my child's physicians but if one were to move across the country tomorrow, I am confident that their replacement would be equally qualified to take over that aspect of my child's care.

If Justina has the issues her parents have stated, she likely has 5 to 6 doctors involved in her care - possibly more.

 

[MyBelle]

I read through this thread and see some good points made. The implication in some of the statements though is that the doctors want to CYA, so much so that even if parents respect them and listen to them, they want to opt out. That doesn't sit right with me. I can't see that any ambulance would transport a patient from one state to another in the middle of snowstorm without medical authority directing them to do so. It is preposterous to think parents could call an ambulance to do that. I agree that Lou and Linda may have assumed or were mistaken that she would be a direct admit to the GI floor. It is also possible that the conservation with Dr. Korson led them to believe that for some reason. What is obvious is they were very loving parents willing to do that for their daughter.

BBM. Private ambulance services do it all the time.

 

[MyBelle]

This has become a polarized case to the extreme. The news reported hundreds but there were 2000 plus there. It is clear from the numbers that many see it as Lou does and want to do see changes made so it can't happen to other families. He is being encouraged to act as he does by others who see parents rights eroding. The Pelletiers had a right to take Justina to another facility. It made sense to take her back to Tufts where she was treated before BCH. Their critics seem to refuse to see that a psychologist and psychiatrist who instigated the involvement of DCF were both invested in the Somatoform disorder by peer reviewed studies, authoring text books and receiving grant money for the disorder studies which clearly is a conflict of interest, and a motive to do what they did. There is no defense or excuse for the treatment of Justina from that time forward in my opinion.

BBM. Link, please, to substantiate this claim.

Parents have never had any "right" to ignore medical directives or withdraw medical care for their children.

There is no excuse for the behavior of Justina's parents. Lying about the care their daughter has received isn't a positive reflection on their character which is why they have lost all support. Their 15-minutes is up.

JMO

 

[Linda7NJ]

BBM. Link, please, to substantiate this claim.



Parents have never had any "right" to ignore medical directives or withdraw medical care for their children.



There is no excuse for the behavior of Justina's parents. Lying about the care their daughter has received isn't a positive reflection on their character which is why they have lost all support. Their 15-minutes is up.



JMO

I see Lou is still threatening and slandering her medical providers. Claiming they broke Justina's teeth and torture her daily.

Heavy sigh....


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[sweetmom]

I see Lou is still threatening and slandering her medical providers. Claiming they broke Justina's teeth and torture her daily.

Heavy sigh....


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Oh dear. It's becoming every more clear that Justina is not the only family member who needs psychiatric help.

 

[Donjeta]

So the parent has to get a second opinion and then decide? Is that it? I thought we were against "doctor shopping?" If parent tells the doctor "I want to follow your directions" but the doctor wants to "sign out" after that, doesn't that imply doctor isn't even confident in his/her own directions?

That is not what I said and you know it.
Parents following their doctor's advice is the normal state of affairs, I should think.

What KZ was talking about imo was those parents who get the alarm bells ringing are likely to have already gotten a second opinion and a third and a fourth (etcetera), and they either give the impression that they've decided that everybody else is stupid except Dr. X who says what they want to hear, or that they're flattering Dr. X and declaring him or her so much better than any other stupid doctors to boost doctor's ego and get their way.

If you're Dr. X you would be wise to stop and think:

If all those stupid doctors who came before me disagreed with me, is there a reason? Am I missing something? Am I getting all the information?
Will they follow my directions any better than the other stupid doctors if I say anything that is uncomfortable to them? If I disagree with the parents, am I going to be another one of those stupid doctors? Is the child getting the treatment he or she needs or the treatment that the parents want?

There are some things that are warning signs of medical abuse and if you ignore that and just bask in the glory of being so confident in your own directions and so much better than all those other doctors you might end up looking fairly stupid and feeling guilty if it turns out that it in fact was a case of medical abuse.

 

[jjenny]

That is not what I said and you know it.
Parents following their doctor's advice is the normal state of affairs, I should think.

What KZ was talking about imo was those parents who get the alarm bells ringing are likely to have already gotten a second opinion and a third and a fourth (etcetera), and they either give the impression that they've decided that everybody else is stupid except Dr. X who says what they want to hear, or that they're flattering Dr. X and declaring him or her so much better than any other stupid doctors to boost doctor's ego and get their way.

If you're Dr. X you would be wise to stop and think:

If all those stupid doctors who came before me disagreed with me, is there a reason? Am I missing something? Am I getting all the information?
Will they follow my directions any better than the other stupid doctors if I say anything that is uncomfortable to them? If I disagree with the parents, am I going to be another one of those stupid doctors? Is the child getting the treatment he or she needs or the treatment that the parents want?

There are some things that are warning signs of medical abuse and if you ignore that and just bask in the glory of being so confident in your own directions and so much better than all those other doctors you might end up looking fairly stupid and feeling guilty if it turns out that it in fact was a case of medical abuse.

Well I guess you are right. If a parent tells the doctor they want to follow his directions, and doctors starts questioning that, that doctor was not confident in his own directions to begin with.

 

[jjenny]

A healthy child generally has one. A child with significant medical issues may have 2 or a handful - or more. My child has 7 that we see on a routine basis and a number that we no longer need but who would jump in if needed or while my kiddo was hospitalized in their city. All of our doctors talk to each other and keep each other up to date on my child's current medical condition. They are all good at communication but one of the best at coordinating care is at Boston Children's. I like and respect each of my child's physicians but if one were to move across the country tomorrow, I am confident that their replacement would be equally qualified to take over that aspect of my child's care.

If Justina has the issues her parents have stated, she likely has 5 to 6 doctors involved in her care - possibly more.

Are you arguing that any doctor is just as competent as anyone else? There are no bad doctors out there?

 

[Donjeta]

Well I guess you are right. If a parent tells the doctor they want to follow his directions, and doctors starts questioning that, that doctor was not confident in his own directions to begin with.

The doctor might be very confident that the child needs the treatment he prescribed but ultimately it's not just about this one prescription and that one operation, it's about a concerning pattern of behavior that needs to be investigated to ensure the safety of the child.

If, a big if, if the parents are medical abusers, they might be giving the doctor false information, and in that case the doctor absolutely should question his own directions because decisions that are based on faked symptoms and misleading history could be false even if you're a brilliant doctor who is normally never wrong.

 

[annahanna]

TTheir critics seem to refuse to see that a psychologist and psychiatrist who instigated the involvement of DCF were both invested in the Somatoform disorder by peer reviewed studies, authoring text books and receiving grant money for the disorder studies which clearly is a conflict of interest, and a motive to do what they did.

The publication of text books and peer reviewed papers and the receipt of research money are all generally viewed as signs of expertise not deceit. If publication and research is the standard, are you suggesting that the Pelletier parents should distrust Dr Mark Korson as well?

 

[annahanna]

Are you arguing that any doctor is just as competent as anyone else? There are no bad doctors out there?

I neither stated nor implied that - but you know that.

Have a lovely day.