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

[jjenny]

Do you have a source for this assertion?

Why do you expect me to provide a source that something didn't happen, when there is no evidence whatsoever that it did?

 

[jaunty-girl]

Do you have a source claiming otherwise?

I made no claim or assertion, I am asking you for your source.

Why do you expect me to provide a source that something didn't happen, when there is no evidence whatsoever that it did?

All I'm doing is asking you to back up your statement, you asserted "absolutely not", you didn't say, I don't think so or I disagree, you stated it as fact.

Maybe you missed it but just a few pages back a moderator posted this
Mod note: Thread is open but please be sure to:

* link when making statements of fact
* stay on the topic of the thread
* keep politics out of the discussion as we have a designated area for that topic

 

[annahanna]

There are more then 40 attending physicians in Gastroenterology at BCH. (That is not counting residents and fellows.) The chance of walking in unannounced and getting the doctor "you want" is slim - at best.

 

[jjenny]

I made no claim or assertion, I am asking you for your source.
All I'm doing is asking you to back up your statement, you asserted "absolutely not", you didn't say, I don't think so or I disagree, you stated it as fact.

Since you have nothing to dispute my claim, I will leave it at that. You don't have to believe it.

 

[jjenny]

There are more then 40 attending physicians in Gastroenterology at BCH. (That is not counting residents and fellows.) The chance of walking in unannounced and getting the doctor "you want" is slim - at best.

Obviously something went wrong. Parents took her in expecting she was going to see Dr. Flores. That never happened.

 

[K_Z]

I feel like it's a parallel universe here. You do understand that her care is back at Tufts? Not at BCH?

Which really makes no sense if BCH was the one with the correct diagnosis. She has a visit there tomorrow with Dr. Korson. The same doctor that diagnosed her with mitochondrial disease.
In fact, in their reunification plan, DCF insisted that parents have to follow treatment plan at Tufts.

Isn't that the treatment plan parents wanted to follow to begin with?

BBM.

Apparently not, since they self-referred to BCH ED, seeking admission.

I don't remember anyone saying or implying that Tufts did anything "wrong"?

I guess I'm confused why there is some insinuation in your post that having Justina's care coordinated at Tufts is somehow undesirable? Or am I reading that wrong?

Tufts is a world class facility, from what I know. The Pelletiers are lucky to be so close to so many great resources for care.

Tufts seems to be a whole lot closer to their home than BCH. That sounds good to me that MA and BCH are trying to coordinate her care closer to the home and state they are trying to ultimately return her to, right? Or did I miss something?

I think there may be a mistaken impression for some that mitochondrial disease and other medical conditions, and somatoform disorder and other psychiatric conditions, cannot coexist. It is possible for someone to have multiple diagnoses, some medical, some psychiatric. It seems to me that some want it to be "all" medical, or "all" psychiatric. She may or may not have mitochondrial disease-- the very doc treating her for this condition has stated publicly he cannot be 100% sure she has it. It's best, IMO, for a multidisciplinary team to look at all of her needs, not just one doctor.

I think the real issue is the desire to exclude every professional on the multidisciplinary team except the "Mito" doc, and maybe the GI doc Flores at BCH. There are lots of good and competent professionals out there. It's the insistence that "only" these docs can treat her, that is very worrisome, IMO. They should be part of the team, not the whole team, IMO.

 

[jjenny]

BBM.

Apparently not, since they self-referred to BCH ED, seeking admission.

I don't remember anyone saying or implying that Tufts did anything "wrong"?

I guess I'm confused why there is some insinuation in your post that having Justina's care coordinated at Tufts is somehow undesirable? Or am I reading that wrong?

Tufts is a world class facility, from what I know. The Pelletiers are lucky to be so close to so many great resources for care.

Tufts seems to be a whole lot closer to their home than BCH. That sounds good to me that MA and BCH are trying to coordinate her care closer to the home and state they are trying to ultimately return her to, right? Or did I miss something?

Treating her at Tufts is not undesirable. It's what her parents wanted to begin with. Tufts isn't closer than BCH. Both of these hospitals are in Boston.
DCF removed her from her parents because her parents wanted to follow Tufts treatment plan instead of BCH's.
So it's very bizarre that DCF now requires parents to follow Tufts treatment plan, don't you think, if BCH diagnosed her correctly?
I am not sure how BCH is trying to coordinate her treatment, considering DCF requires that parents follow Tufts treatment plan?
So Tufts is the one coordinating her treatment, not BCH.

 

[annahanna]

Obviously something went wrong. Parents took her in expecting she was going to see Dr. Flores. That never happened.

Quite obviously a lot went wrong. Dr Flores was not in the hospital at 4 AM on a Sunday morning in the middle of a snowstorm. Dr Flores was not expected to be there because he was not on call that particular day. There is no reason for a patient to expect that a specific doctor will materialize simply because they wish it to be so. Before you tell me that they were "sent by Tufts" to see Flores, please spare me. If the on-call from Tufts thought it was an emergency, they would have advised the parents to take her to the nearest emergency room. If they did not think it was an emergency, they may have advised them to follow up with their GI. That does not mean hop into a private medical transport in the middle of the night on a weekend in a snowstorm and make the treacherous 100 mile trip to see a doctor who is not on call. That means follow up at the earliest reasonable time - by calling Monday morning perhaps?

 

[K_Z]

Obviously something went wrong. Parents took her in expecting she was going to see Dr. Flores. That never happened.

That's the whole point. If that was the expectation of the parents, it was a very inappropriate expectation to have. For pete's sake-- they had just electively decided to travel across state lines in the middle of the night, in a snowstorm, on a weekend, and they were informed that particular doc was not on call when they got there. At that point, they needed to substantially modify their expectations, IMO.

It's not like BCH ED refused to care for Justina!

They didn't show up at an outpatient clinic. They showed up to an Emergency Department. No one gets to dictate who they see in an ED.

 

[K_Z]

Treating her at Tufts is not undesirable. It's what her parents wanted to begin with. Tufts isn't closer than BCH. Both of these hospitals are in Boston.
DCF removed her from her parents because her parents wanted to follow Tufts treatment plan instead of BCH's.So it's very bizarre that DCF now requires parents to follow Tufts treatment plan, don't you think, if BCH diagnosed her correctly?
I am not sure how BCH is trying to coordinate her treatment, considering DCF requires that parents follow Tufts treatment plan?
So Tufts is the one coordinating her treatment, not BCH.

BBM. No, that's not quite right.

DCF removed her from custody because "something" (and we don't know the whole story) was going on that put Justina's health and safety at immediate risk. Once that happened, the parents were not "free" to sign her out AMA from BCH to go to Tufts, which is what Lou wanted to do when the security guards showed up manning the doors in the patient unit. He was not free to take her out of the hospital at that time. He still doesn't understand that, IMO. It had nothing to do with Tufts. It had everything to do with Justina's health and safety in his custody. That's what the court order was about--not Tufts.

 

[jjenny]

That's the whole point. If that was the expectation of the parents, it was a very inappropriate expectation to have. For pete's sake-- they had just electively decided to travel across state lines in the middle of the night, in a snowstorm, on a weekend, and they were informed that particular doc was not on call when they got there. At that point, they needed to substantially modify their expectations, IMO.

It's not like BCH ED refused to care for Justina!

They didn't show up at an outpatient clinic. They showed up to an Emergency Department. No one gets to dictate who they see in an ED.

How does any of it justify what happened next?
Why did BCH not allow doctor Flores to see when he came back to work (as claimed by the parents)?

 

[jjenny]

BBM. No, that's not quite right.

DCF removed her from custody because "something" (and we don't know the whole story) was going on that put Justina's health and safety at immediate risk. Once that happened, the parents were not "free" to sign her out AMA from BCH to go to Tufts, which is what Lou wanted to do when the security guards showed up manning the doors in the patient unit. He was not free to take her out of the hospital at that time. He still doesn't understand that, IMO. It had nothing to do with Tufts. It had everything to do with Justina's health and safety in his custody. That's what the court order was about--not Tufts.

I haven't seen anything to suggest that there was anything that put her health and safety at immediate risk.

 

[K_Z]

I haven't seen anything to suggest that there was anything that put her health and safety at immediate risk.

Well, none of us are privy to the details that were discussed when the custody severing decision was made. Just because it isn't apparent to you, doesn't mean there were not valid, legal reasons.

No vast conspiracy. Just professionals doing their best to do their jobs, IMO.

 

[annahanna]

According to various media sources, the parents' representatives have said that the parents have an appointment on 5/30 (today) with DCF and the Tufts medical team. It will be interesting to see if the family releases the Tufts medical care plan that has been developed after Justina's recent appointments with several doctors there. I hope and pray, for Justina's sake, that the meeting goes well and the parents can keep control their emotions to come to a peaceful and appropriate solution for Justina.

 

[K_Z]

How does any of it justify what happened next?
Why did BCH not allow doctor Flores to see when he came back to work (as claimed by the parents)?

I can't be certain, of course, but my thoughts are that the medical child abuse team wanted a "fresh look" at the whole situation, using docs that had not treated her at all before. No bias that way. Very ethical way to proceed, IMO.

 

[Donjeta]

Treating her at Tufts is not undesirable. It's what her parents wanted to begin with. Tufts isn't closer than BCH. Both of these hospitals are in Boston.
DCF removed her from her parents because her parents wanted to follow Tufts treatment plan instead of BCH's.
So it's very bizarre that DCF now requires parents to follow Tufts treatment plan, don't you think, if BCH diagnosed her correctly?
I am not sure how BCH is trying to coordinate her treatment, considering DCF requires that parents follow Tufts treatment plan?
So Tufts is the one coordinating her treatment, not BCH.

MOO we would have to be privy to her medical records to say that it's bizarre that Tufts coordinates her treatment now if BCH diagnosed her correctly.

This assertion presumes that the current Tufts treatment plan disagrees with the BCH diagnosis and treatment recommendations but we have no guarantee that it does.

 

[liljim]

I feel like it's a parallel universe here. You do understand that her care is back at Tufts?
Not at BCH?
Which really makes no sense if BCH was the one with the correct diagnosis. She has a visit there tomorrow with Dr. Korson. The same doctor that diagnosed her with mitochondrial disease.
In fact, in their reunification plan, DCF insisted that parents have to follow treatment plan at Tufts.
Isn't that the treatment plan parents wanted to follow to begin with?

Where did you read the details of the new treatment plan she is being advised to follow with Tufts?

Please link it as I would love to read it. Thanx.

 

[K_Z]

Actually, none of us know who, or how many docs and other therapists and professionals are on the proposed Tufts team for Justina. I do think, however, that it can be extrapolated that Dr. Korson is not her only physician. He may, or may not be part of her new team. If he is part of her new team, I'd think he would welcome the multidisciplinary approach, since he has stated publicly he is not sure that Justina has mitochondrial disease. With the uncertainty, it is definitely best, IMO, to have a well-represented, multidiscipinary team of specialists.

It's dangerous for anyone, IMO, with an uncertain diagnosis, to be treated "only" by a specialist for the "uncertain diagnosis." (And there isn't much definitive treatment for mitochondrial disease as it is.)

Justina isn't yet an adult, able to choose for herself the medical team she wants. Until that time, it is legal and prudent to cast a wide net to ensure all likely professional interpretations of her health are included, so that she can make it to adulthood as mentally and physically healthy as possible. Then she can make her own decisions.

The courts have determined that the decisions about her care, for the time being, require outside supervision and coordination. And they have outlined a procedure for the parents to regain custody. The ball is in the parents' court. They can continue to overlook Justina in their insistence on belligerent and bellicose behavior, or they can decide to be on her side and a welcomed part of her team.

I hope they choose their daughter, and can come to terms that choosing Justina's needs ahead of their own isn't failure or surrender on their part. I do think they love her, but I don't think they know how to work as a team with anyone for her best interests. They appear most interested in their own desires to continue to argue and fight, and not give an inch, IMO. It's sad that there are a small group of people at their rallies that admire them for that, IMO.

 

[Donjeta]

It seems some arguments equate Justina's care being coordinated at Tufts with an admission "you were right, we were wrong, she doesn't have a psychiatric disorder, there's nothing in the family that requires changing, everything is just mito" but we have seen nothing to substantiate that. The reunification plan that was released required family therapy so apparently whatever else the Tufts doctors are recommending there is also a psychosocial aspect here according to their views.

And we haven't really seen anything to substantiate that Tufts ever thought that it was all just mito and no psychiatric/psychosocial problems were involved.

Tufts is not just Dr. Korson and even if it was we don't know that he still thinks that everything is just mito and there is nothing wrong with the way the family approaches all of this (or if he ever did...)

 

[believe09]

It seems some arguments equate Justina's care being coordinated at Tufts with an admission "you were right, we were wrong, she doesn't have a psychiatric disorder, there's nothing in the family that requires changing, everything is just mito" but we have seen nothing to substantiate that. The reunification plan that was released required family therapy so apparently whatever else the Tufts doctors are recommending there is also a psychosocial aspect here according to their views.

And we haven't really seen anything to substantiate that Tufts ever thought that it was all just mito and no psychiatric/psychosocial problems were involved.

Tufts is not just Dr. Korson and even if it was we don't know that he still thinks that everything is just mito and there is nothing wrong with the way the family approaches all of this (or if he ever did...)

This child was taken from her family and undoubtedly told she had a psychiatric disorder, not a physical one, for over a year. Her family has been desperate to bring her home and right the grievous wrong they feel has been committed against their child. The stress of Justina's removal, her possible lack of improvement if not downward spiral in her physical health, the court cases, the undoubted terror on everyone's part would require some kind of family therapy at a minimum I would think. I am not sure I would assume that this is indicative of anything other than an incredible tear in the family unit that requires help for everyone, certainly emotionally.

Honestly, there are no winners here in the short term imho. In the long term, I hope that this period of time will be well sorted out and has been well documented in such a way that Justina will feel safe and will have a clear understanding of the circumstances surrounding all of this. Respectfully, Dr Korson is Tufts if you are a mitochondrial patient.