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

[jjenny]

It does not appear to be true that the family doesn't know anything as Staver was just saying the family had been told something about the planned frequency of the visits and Lou protested a while ago that she had been taken off some of the medications he thought necessary, iirc for a heart condition.

I presume they get the information from their "sources" and not through any official channels. Doctor isn't allowed to tell parents anything from what parents say.

 

[Donjeta]

It is possible to have medically unexplained symptoms even if one has a medical diagnosis. Even mitochondrial disease doesn't explain everything under the sun.

The DSM-5 edition has replaced somatoform with somatic symptom disorder. It is not required that there is no medical explanation for somatic symptoms, the criteria have more to do with excessive and disruptive thoughts, feelings and behaviors regarding those symptoms.

http://www.dsm5.org/Documents/Somatic Symptom Disorder Fact Sheet.pdf

 

[jjenny]

It is possible to have medically unexplained symptoms even if one has a medical diagnosis. Even mitochondrial disease doesn't explain everything under the sun.

The DSM-5 edition has replaced somatoform with somatic symptom disorder. It is not required that there is no medical explanation for somatic symptoms, the criteria have more to do with excessive and disruptive thoughts, feelings and behaviors regarding those symptoms.

http://www.dsm5.org/Documents/Somatic Symptom Disorder Fact Sheet.pdf

I see. Now everybody in the world can claim they have somatic symptom disorder.

 

[Linda7NJ]

Parents claim they are not being told about treatments, tests, etc. They are not being informed on what is going on with her. So how can they embrace it?

Do you want examples?

How about physical therapy ? They know she's receiving it. It would be terrific if the parents didn't describe it as torture.
It would go a long way to stop shouting through a bullhorn, slandering everyone involved and claiming publicly that Justina is DYING.






Sent from my iPhone using Tapatalk

 

[Linda7NJ]

Dr. Korson is the one who she is seeing. He diagnosed her with mitochondrial disease.

Please provide a link that Dr. Korson is the ONLY doctor she will be seeing at Tufts.


Sent from my iPhone using Tapatalk

 

[Donjeta]

Dr. Korson is the one who she is seeing. He diagnosed her with mitochondrial disease.

No doubt it was the frequency of his visits Staver was talking about but there could also be other people involved with her care, eg. a psychiatric team. I don't think Korson is the only doctor at Tufts, although it might be in the parents best interests to give the public the notion that he is.

 

[Donjeta]

I see. Now everybody in the world can claim they have somatic symptom disorder.

Everybody can claim they have a million dollars now, doesn't make it true.

 

[Gardenlady]

Tufts hasn't diagnosed her with somatoform. Tufts diagnosed her with mitochondrial disease. Now DCF insists she has to be treated at Tufts. How would even be possible for her to "accept the diagnosis of somatoform?"

No. Korson, not"Tufts", was using a working diagnosis of mito. This was not a confirmed diagnosis.

Doctors at BCH diagnosed her as having somatoform. We do not know if they also fully abandoned the working dx of mito. As NONE OF US HAVE SEEN HER FULL RECORDS OR CHARTS, we do not know anything other than the above two facts: Korson had a working dx of mito, BCH gave her a dx of somatoform.

It is fully possible she has both these conditions. To merely say, as you put it in a different post "mito would explain the symptoms" shows a lack of understanding of both diagnoses. Mito does not explain any and all symptoms a patient has. If you go to the doctor for ear pain and discharge, you aren't going to have those signs and symptoms chalked up to mito even if you have a confirmed dx of mito. You're gonna get a dx of otitis media, probably.

And further, this isn't even taking into account the possibility that she has other, as yet unknown conditions besides mito or somatoform. There could be anything.

 

[jjenny]

No. Korson, not"Tufts", was using a working diagnosis of mito. This was not a confirmed diagnosis.

Doctors at BCH diagnosed her as having somatoform. We do not know if they also fully abandoned the working dx of mito. As NONE OF US HAVE SEEN HER FULL RECORDS OR CHARTS, we do not know anything other than the above two facts: Korson had a working dx of mito, BCH gave her a dx of somatoform.

It is fully possible she has both these conditions. To merely say, as you put it in a different post "mito would explain the symptoms" shows a lack of understanding of both diagnoses. Mito does not explain any and all symptoms a patient has. If you go to the doctor for ear pain and discharge, you aren't going to have those signs and symptoms chalked up to mito even if you have a confirmed dx of mito. You're gonna get a dx of otitis media, probably.

And further, this isn't even taking into account the possibility that she has other, as yet unknown conditions besides mito or somatoform. There could be anything.

So, if you have, I don't know, cancer, and then "excessively" think about symptoms. What should you be treated for, exactly? Excessive symptoms of thinking about it, or the actual disease? This new definition makes "somatic symptoms disorder" even more useless than it was before.
Patients with serious medical conditions are going to be thinking about their symptoms.

 

[Linda7NJ]

The problem has been the belief ( founded or not) that Justina's parents exaggerate her symptoms or fabricate them and encourage her to believe she is worse than she is. Which is rather easy to do psychologically.

The plan requires them not to give medical input.

Typically, when a parent takes a child to the doctor, the parent describes the problem to the doctor. This can cause a problem if the described symptom isn't witnessed by the doctor at the time of examination. One example, seizures. Doctors reply on parental reports the seizure occurred as they weren't present. A parent can convince a doctor the child has had numerous seizures easily...even if there were none.




Sent from my iPhone using Tapatalk

 

[Gardenlady]

So, if you have, I don't know, cancer, and then "excessively" think about symptoms. What should you be treated for, exactly? Excessive symptoms of thinking about it, or the actual disease?

Somatoform is not simply excessive thinking. Obsessive thoughts could be anything from OCD to anxiety to depression and can be INCLUDED in somatic symptom disorder. One can have both cancer and OCD, cancer and anxiety.

 

[jjenny]

Somatoform is not simply excessive thinking. Obsessive thoughts could be anything from OCD to anxiety to depression and can be INCLUDED in somatic symptom disorder. One can have both cancer and OCD, cancer and anxiety.

So in a case where one has cancer and anxiety, what should one be treated for?
Only anxiety?

 

[Gardenlady]

Yes, clearly, one should only treat the anxiety. Maybe Rev whathisname can pray the cancer away.

 

[Donjeta]

So, if you have, I don't know, cancer, and then "excessively" think about symptoms. What should you be treated for, exactly? Excessive symptoms of thinking about it, or the actual disease? This new definition makes "somatic symptoms disorder" even more useless than it was before.
Patients with serious medical conditions are going to be thinking about their symptoms.

Well, it seems kind of obvious to me that you maybe ought to be treated for both if it's bad enough. It's nothing new, it has been done before. There are somatic therapies for cancer and other diseases AND psychological/psychiatric interventions available, to help deal with it if the somatic situation leads to severe anxiety or other significant mental/behavioral problems.

 

[Donjeta]

The problem has been the belief ( founded or not) that Justina's parents exaggerate her symptoms or fabricate them and encourage her to believe she is worse than she is. Which is rather easy to do psychologically.

The plan requires them not to give medical input.

Typically, when a parent takes a child to the doctor, the parent describes the problem to the doctor. This can cause a problem if the described symptom isn't witnessed by the doctor at the time of examination. One example, seizures. Doctors reply on parental reports the seizure occurred as they weren't present. A parent can convince a doctor the child has had numerous seizures easily...even if there were none.




Sent from my iPhone using Tapatalk

If present behavior is a predictor of past behavior (which it may not be, given the extreme stress everybody is under) it isn't very hard to see some potential issues with the general tendency of describing Justina's treatment in very dramatic terms (she's been tortured and dying for more than a year now)

If the same thing went on to some degree before Justina was taken into custody it is not difficult to imagine why a child might be overly distressed about her somatic symptoms.

 

[Donjeta]

"Remember the original excuse was DCF’s accusation of “medical abuse” against the Pelletiers. That “abuse” consisted of following treatment prescribed by doctors at Tufts Medical Center. Now, Polanowicz’s own plan calls for the Pelletiers to “follow through with the Tufts Medical Center plan.”

Wait — isn’t that why the state took Justina in the first place?"

http://news.bostonherald.com/news_o...14/05/graham_justina_reunion_a_political_ploy

I just wonder if this isn't an intentional oversimplification. What I mean is, if the family believed that following through with the Tufts plan just meant going back to Korson and getting him to treat Justina for mito, why would they have objected? They wouldn't have called the plan a kick in the stomach, they ought to have been over the moon that Justina's life was finally going to be saved by getting her the right drugs.

 

[jjenny]

Well, it seems kind of obvious to me that you maybe ought to be treated for both if it's bad enough. It's nothing new, it has been done before. There are somatic therapies for cancer and other diseases AND psychological/psychiatric interventions available, to help deal with it if the somatic situation leads to severe anxiety or other significant mental/behavioral problems.

If you ought to be treated for both, why did BCH refuse to treat Justina for mitochondrial disease?
They wanted her taken off her meds (treatment plan BCH had for Justina), refuse her GI specialist from seeing her (this one based on what parents say), and forbade parents from seeking another opinion (treatment plan BCH had for Justina).

 

[jjenny]

I just wonder if this isn't an intentional oversimplification. What I mean is, if the family believed that following through with the Tufts plan just meant going back to Korson and getting him to treat Justina for mito, why would they have objected? They wouldn't have called the plan a kick in the stomach, they ought to have been over the moon that Justina's life was finally going to be saved by getting her the right drugs.

Again, parents are not being told on what treatment she is getting (or not).
Dr. Korson is not allowed to tell them anything.
They are not allowed to make any decisions on the treatment.

 

[jjenny]

If present behavior is a predictor of past behavior (which it may not be, given the extreme stress everybody is under) it isn't very hard to see some potential issues with the general tendency of describing Justina's treatment in very dramatic terms (she's been tortured and dying for more than a year now)

If the same thing went on to some degree before Justina was taken into custody it is not difficult to imagine why a child might be overly distressed about her somatic symptoms.

And of course the right course of treatment is removing the child from everything she knows and locking her up in a secure psychiatric ward.
That should get her to be all better.

 

[Donjeta]

If you ought to be treated for both, why did BCH refuse to treat Justina for mitochondrial disease?
They wanted her taken off her meds (treatment plan BCH had for Justina), refuse her GI specialist from seeing her (this one based on what parents say), and forbade parents from seeking another opinion (treatment plan BCH had for Justina).

Well, we haven't seen her medical charts and we don't know if the parents version is exactly what was going on. Wasn't there an article that implied that she was still getting the vitamin cocktail after being taken into custody?

But in many cases people wouldn't want to be treated for cancer if it isn't certain that they have it and sometimes cancer treatments are withheld because the side effects are expected to be worse than the disease (eg. prostatic cancer). It could be something similar.