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

[Donjeta]

She has a whole bunch of symptoms that fit mitochondrial disorder.
Childhood stroke could be an initial manifestation of mitochondrial disorder. Surely no one is going to argue she somehow caused her own stroke at age 4 because of somatoform.
Her bowel issues could be a symptom of mitochondrial disorder.
Muscle weakness could be a symptom of mitochondrial disorder.
For BCH to just dismiss this diagnosis within days and come up with somatoform (for which there are no tests) seems ludicrous to me.

That's pretty much what makes me think that the parents maybe aren't telling us the whole story and there was something that caused BCH to be concerned and decide something wasn't right. Whether they were right or wrong, there is a missing piece in here that would explain why they did what they did.

 

[wendiesan]

Apparently, Prof. Alan Dershowitz, is discussing the possibility of working (on a pro bono basis) with the family's legal team regarding the "broader Constitutional issues" of the case.

http://www.foxnews.com/health/2014/...family-to-take-up-offer-from-alan-dershowitz/

 

[jjenny]

That's pretty much what makes me think that the parents maybe aren't telling us the whole story and there was something that caused BCH to be concerned and decide something wasn't right. Whether they were right or wrong, there is a missing piece in here that would explain why they did what they did.

I don't know what causes BCH to be concerned, but Justina isn't the only child with some rare disease BCH reported to DCF and then stuck into a psychiatric ward.
I am providing a link about another child. Seems to be a very similar story. There are more of similar stories where BCH contacts DCF about a child with a rare disease claiming medical child abuse. DCF and judges seem to oblige.
I believe Elizabeth was eventually returned to her family, unlike Justina.

"However, the following Monday, they learned the hospital contacted Massachusetts Child Protective Services and urged them to file for temporary custody of Elizabeth and admit her to a psych ward at BCH, Wray claims."

http://bostinno.streetwise.co/2012/...-hopsital-custody-battle-pandas-pans-disease/

 

[Linda7NJ]

Remember those cheerleaders that came down with Tourette's like symptoms, in New York State?
The mind /body connection is very real and powerful.
It hardly seems fair to dismiss it with a statement like "it's all in her head"

It's far more complicated than that. The symptoms are real.

IMO



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[jjenny]

Remember those cheerleaders that came down with Tourette's like symptoms, in New York State?
The mind /body connection is very real and powerful.
It hardly seems fair to dismiss it with a statement like "it's all in her head"

It's far more complicated than that. The symptoms are real.

IMO



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What good does claiming that she has somatoform do if there is no improvement in her condition? It appears to be a completely useless diagnosis if she can not be fixed.
How does it justify removing her from her parents?

 

[Linda7NJ]

What good does claiming that she has somatoform do if there is no improvement in her condition? And she certainly didn't have a stroke due to this supposed somatoform.

To assume her stoke has anything to do definitively with a dx of mito would be a mistake IMO.

Not every child that suffers a stoke develops mito.ykwim?

The likelihood they are related is IMO statistically less likely than not.


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[jjenny]

To assume her stoke has anything to do definitively with a dx of mito would be a mistake IMO.

Not every child that suffers a stoke develops mito.ykwim?

The likelihood they are related is IMO statistically less likely than not.


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It's not about developing mito after a stroke. Stroke could be an initial manifestation of mitochondrial disease. Disease is already present.

 

[MissJ]

I've worked in the psych field for more years than I want to admit to and I cannot understand where these Psychologists are coming from with their interference with another MD's diagnosis. I admit I have not kept up with this case like most of you have but It is as if they are calling the other MD's quacks. How can the parents be at fault if an MD is telling them their children have this disorder? Are they saying the parent's are making them sick somehow? Just asking. Somatoform disorder is real but it is the patient who exhibits the symptoms....not the family doing anything wrong. That is Munchausen's By Proxy. If their treatment isn't working perhaps they are wrong. MOO

 

[Donjeta]

I don't know what causes BCH to be concerned, but Justina isn't the only child with some rare disease BCH reported to DCF and then stuck into a psychiatric ward.
I am providing a link about another child. Seems to be a very similar story. There are more of similar stories where BCH contacts DCF about a child with a rare disease claiming medical child abuse. DCF and judges seem to oblige.
I believe Elizabeth was eventually returned to her family, unlike Justina.

"However, the following Monday, they learned the hospital contacted Massachusetts Child Protective Services and urged them to file for temporary custody of Elizabeth and admit her to a psych ward at BCH, Wray claims."

http://bostinno.streetwise.co/2012/...-hopsital-custody-battle-pandas-pans-disease/

According to the National Institute of Mental Health, PANDAS is triggered by sicknesses like strep throat and can lead to Obsessive Compulsive Disorder and body tics almost overnight.

It can also lead to bouts with anorexia or trouble eating, as it has in the case of Elizabeth, according to her family.

Pandas is a kind of a controversial diagnosis but if she suffered from anorexia psychiatric treatment sounds like just the thing to me, regardless of the initial cause. Anorexia can kill you.

It's not an either or situation: Either you need psychiatric treatment or you have a rare medical diagnosis. Sometimes you can have both.

DSM-5 makes that point when they redefined somatoform and related diagnoses:

Another key change in the DSM-5 criteria is that while medically unexplained symptoms were a key feature for many of the disorders in DSM-IV, an SSD diagnosis does not require that the somatic symptoms are medically unexplained. In other words, symptoms may or may not be associated with another medical condition. DSM-5 narrative text description that accompanies the criteria for SSD cautions that it is not appropriate to diagnose individuals with a mental disorder solely because a medical cause cannot be demonstrated. Furthermore, whether or not the somatic symptoms are medically explained, the individual would still have to meet the rest of the criteria in order to receive a diagnosis of SSD.

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

 

[jjenny]

Mitochondrial disease can kill you too.
If BCH misdiagnosed her and terminated her treatment for mitochondrial disease, discontinued her medication, what then?
BCH came up with "somatoform" within several days. And was trying to make parents to sign treatment plan preventing them from seeking another opinion.
How did BCH, within days, eliminated all possible physical causes for her condition? Somatoform diagnosis is arrived to by exclusion. Possible physical causes need to be eliminated first.

 

[Donjeta]

No way for us to tell how they arrived at the diagnosis without access to her medical files imo but if they had access to her old medical files from other hospitals they could have reviewed years worth of information, not just days.

 

[jjenny]

No way for us to tell how they arrived at the diagnosis without access to her medical files imo but if they had access to her old medical files from other hospitals they could have reviewed years worth of information, not just days.

That other hospital diagnosed her with mitochondrial disease. How could they possibly look at the same information and decide that diagnosis was wrong?
And why should anybody assume BCH doctor's are the ones who got it right? Are they smarter than anyone else? What have they got to show for it? The child is in wheelchair with receding hairline after all the treatment she got from them.
They didn't even allow the doctor she came to see (Dr. Flores) to examine her, from what her family said.

 

[jjenny]

I've worked in the psych field for more years than I want to admit to and I cannot understand where these Psychologists are coming from with their interference with another MD's diagnosis. I admit I have not kept up with this case like most of you have but It is as if they are calling the other MD's quacks. How can the parents be at fault if an MD is telling them their children have this disorder? Are they saying the parent's are making them sick somehow? Just asking. Somatoform disorder is real but it is the patient who exhibits the symptoms....not the family doing anything wrong. That is Munchausen's By Proxy. If their treatment isn't working perhaps they are wrong. MOO

Psychologists don't even have an MD. Psychiatrists are the ones that have an MD. In most states, psychologists aren't even allowed to prescribe medication.
As for family making her sick, I don't think BCH and DCF are alleging Munchausen by Proxy.
Judge in his ruling claimed Justina has severe and persistent somatic symptom disorder. Which means DCF and BCH claim she exhibits the symptoms, but it's "all in her head," not that family is making her sick. By claiming her somatic symptom disorder is severe and persistent, I presume the judge is basically admitting all the treatment they tried on her didn't really work.

 

[Donjeta]

That other hospital diagnosed her with mitochondrial disease. How could they possibly look at the same information and decide that diagnosis was wrong?
And why should anybody assume BCH doctor's are the ones who got it right? Are they smarter than anyone else? What have they got to show for it? The child is in wheelchair with receding hairline after all the treatment she got from them.
They didn't even allow the doctor she came to see (Dr. Flores) to examine her, from what her family said.

No way for us to know without access to her medical files imo.

 

[liljim]

http://www.childrenshospital.org/~/...pecial_Procedures_for_Wards_of_the_State.ashx

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2201985/

http://answers.hhs.gov/ohrp/questions/7209

 

[MissJ]

Psychologists don't even have an MD. Psychiatrists are the ones that have an MD. In most states, psychologists aren't even allowed to prescribe medication.
As for family making her sick, I don't think BCH and DCF are alleging Munchausen by Proxy.
Judge in his ruling claimed Justina has severe and persistent somatic symptom disorder. Which means DCF and BCH claim she exhibits the symptoms, but it's "all in her head," not that family is making her sick. By claiming her somatic symptom disorder is severe and persistent, I presume the judge is basically admitting all the treatment they tried on her didn't really work.

I know psychologists are not MD's which is why it is so concerning to me that they made this diagnosis and have kept this young girl from her parents. I can't imagine any legal leg to stand on for them to do this. It is really outrageous to me how they jumped to conclusions and so soon.

 

[MissJ]

That other hospital diagnosed her with mitochondrial disease. How could they possibly look at the same information and decide that diagnosis was wrong?
And why should anybody assume BCH doctor's are the ones who got it right? Are they smarter than anyone else? What have they got to show for it? The child is in wheelchair with receding hairline after all the treatment she got from them.
They didn't even allow the doctor she came to see (Dr. Flores) to examine her, from what her family said.

ITA. What makes them think they know more than MD's who were treating her?
I've never seen professional people act this way and it is disturbing.

 

[liljim]

ITA. What makes them think they know more than MD's who were treating her?
I've never seen professional people act this way and it is disturbing.

makes you wonder if there might be a lot of information about their decision that we have not seen doesn't it?

also, it certainly is because of the specific illnesses involved. keep in mind that her tufts doctor has never stated she absolutely has mitochondrial disease, but that she is symptomatic of it. and he acknowledged that other doctors and facilities would not agree, and that they specifically use different methods and criteria for diagnosis than he does.

 

[jjenny]

makes you wonder if there might be a lot of information about their decision that we have not seen doesn't it?

also, it certainly is because of the specific illnesses involved. keep in mind that her tufts doctor has never stated she absolutely has mitochondrial disease, but that she is symptomatic of it. and he acknowledged that other doctors and facilities would not agree, and that they specifically use different methods and criteria for diagnosis than he does.

Sounds like her Tufts doctor is smart enough to figure out that MDs can be fallible.

 

[jjenny]

No way for us to know without access to her medical files imo.

I don't need to see her medical file to know that she has been diagnosed by BCH's doctors with a disorder for which there are no tests.
And by definition physiological reasons for symptoms need to be ruled out first.
These doctors in BCH saw her for period of days. Yet they somehow become so convinced she has somatoform, parents were forbidden from even seeking another opinion. Even though she was diagnosed by a reputable doctor with mitochondrial disorder. So, what gives?

"Doctors need to perform many tests to rule out other possible causes before they diagnose a somatoform disorder."
http://www.webmd.com/mental-health/somatoform-disorders-symptoms-types-treatment