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

[CathyinTexas]

A muscle biopsy is a test and it was not done in this case, according to Dr. Peters. <modsnip>

Somebody may have said this already, but the Tufts team had been treating Justina's sister for several years, a muscle biopsy sent off to 2 different labs confirmed Mito in her case. She was treated successfully for it. Mito can be genetic and the expert doctor's in this case believed there were enough symptoms, combined with her sister's biopsy confirmation to treat her for Mito. She apparently was doing well, had a set back when she came down with flu and had secondary symptoms, that is why she was taken to BCH.

 

[MyBelle]

Somebody may have said this already, but the Tufts team had been treating Justina's sister for several years, a muscle biopsy sent off to 2 different labs confirmed Mito in her case. She was treated successfully for it. Mito can be genetic and the expert doctor's in this case believed there were enough symptoms, combined with her sister's biopsy confirmation to treat her for Mito. She apparently was doing well, had a set back when she came down with flu and had secondary symptoms, that is why she was taken to BCH.

BBM. While you may certainly believe that is accepted medical practice, the BCH doctors apparently do not and neither do I. I doubt any physician finds it acceptable to use a sibling's test results to make a diagnosis.

JMO

 

[lawstudent]

People usually don't die from symptoms.

I assume you're saying that mito isn't usually fatal? That's true.

Fortunately, there's no reason to believe that Justina is dying.

 

[jjenny]

BBM. While you may certainly believe that is accepted medical practice, the BCH doctors apparently do not and neither do I. I doubt any physician finds it acceptable to use a sibling's test results to make a diagnosis.

JMO

Considering somatoform is a diagnosis of exclusion, BCH doctors could have done this biopsy to exclude mitochondrial disease.
In fact to properly diagnose somatoform BCH should have run a lot of tests on Justina to exclude possible physical reasons for her symptoms.

 

[gitana1]

At this point she is no longer at Children's and Children's are not in charge of her care.
She has sever symptoms, including GI symptoms, and inability to ambulate, but by diagnosing her with somatoform, Children's claimed it was psychological.
Why would they have a different opinion on blood pressure?

Those appear to be symptoms of somatoform as well, BTW:

Each of the following criteria must have been met, with individual symptoms occurring at any time during the course of the disturbance:

• four pain symptoms: a history of pain related to at least four different sites or functions (e.g., head, abdomen, back, joints, extremities, chest, rectum, during menstruation, during sexual intercourse, or during urination)
• two gastrointestinal symptoms: a history of at least two gastrointestinal symptoms other than pain (e.g., nausea, bloating, vomiting other than during pregnancy, diarrhea, or intolerance of several different foods)
• one sexual symptom: a history of at least one sexual or reproductive symptom other than pain (e.g., sexual indifference, erectile or ejaculatory dysfunction, irregular menses, excessive menstrual bleeding, vomiting throughout pregnancy)
• one psuedoneurological symptom: a history of at least one symptom or deficit suggesting a neurological condition not limited to pain (conversion symptoms such as impaired coordination or balance, paralysis or localized weakness, difficulty swallowing or lump in throat, aphonia, urinary retention, hallucinations, loss of touch or pain sensation, double vision, blindness, deafness, seizures; dissociative symptoms such as amnesia; or loss of consciousness other than fainting) http://psychcentral.com/disorders/somatization-disorder-symptoms/

 

[MyBelle]

I assume you're saying that mito isn't usually fatal? That's true.

Fortunately, there's no reason to believe that Justina is dying.

BBM. I didn't say anything about Mito. I said people don't usually die from symptoms.

I agree there is no reason to believe Justina is dying. The histrionics of her parents have grown stale, not fatal.

JMO

 

[gitana1]

BBM. While you may certainly believe that is accepted medical practice, the BCH doctors apparently do not and neither do I. I doubt any physician finds it acceptable to use a sibling's test results to make a diagnosis.

JMO

Actually, family history is one of the diagnostic criteria:

A family history of illness may point toward maternally inherited mitochondrial disease, but the manifestation of the disease may vary tremendously among family members. http://www.bcmj.org/articles/mitochondrial-disease-clinical-manifestations-overview

Diagnosis/testing. In some individuals, the clinical picture is characteristic of a specific mitochondrial disorder (e.g., LHON, NARP, or maternally inherited LS), and the diagnosis can be confirmed by molecular genetic testing of DNA extracted from a blood sample. In many individuals, such is not the case, and a more structured approach is needed, including family history, blood and/or CSF lactate concentration, neuroimaging, cardiac evaluation, and muscle biopsy for histologic or histochemical evidence of mitochondrial disease, and molecular genetic testing for a mtDNA mutation.http://www.ncbi.nlm.nih.gov/books/NBK1224/

Mitochondrial disease is diagnosed by:

• Evaluating the patient's family history
• Performing a complete physical examination
• Performing a neurological examination
• Performing a metabolic examination that includes blood, urine, and optional cerebral spinal fluid tests
• Performing other tests, depending on the patient's specific condition and needs. These tests might include:
  • Magnetic resonance imaging (MRI) or scan (MRS) if neurological symptoms are present
  • Retinal exam or electroretinogram if vision symptoms are present
  • Electrocardiogram (EKG) or echocardiogram if heart disease symptoms are present
  • Audiogram or BAEP if hearing symptoms are present
  • Blood test to detect thyroid dysfunction if thyroid problems are present
  • Blood test to perform genetic DNA testing

More invasive tests, such as a skin or muscle biopsy, might be performed as needed and recommended by your doctor. http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=8032195

Diagnostic Tests in Mitochondrial Diseases

Type Test What it shows Family history Clinical exam or oral history of family members Can sometimes indicate inheritance pattern by noting &#8220;soft signs&#8221; in unaffected relatives. These include deafness, short stature, migraine headaches and PEO. Muscle biopsy 1. Histochemistry
2. Immunohistochemistry
3. Biochemistry
4. Electron microscopy
1. Detects abnormal proliferation of mitochondria and deficiencies in cytochrome c oxidase (COX, which is complex IV in the electron transport chain).
2. Detects presence or absence of specific proteins. Can rule out other diseases or confirm loss of electron transport chain proteins.
3. Measures activities of specific enzymes. A special test called polarography measures oxygen consumption in mitochondria.
4. May confirm abnormal appearance of mitochondria. Not used much today.
Blood enzyme test 1. Lactate and pyruvate levels
2. Serum creatine kinase
1. If elevated, may indicate deficiency in electron transport chain; abnormal ratios of the two may help identify the part of the chain that is blocked.
2. May be slightly elevated in mitochondrial disease but usually only high in cases of mitochondrial DNA depletion.
Genetic test 1. Known mutations
2. Rare or unknown mutations
1. Uses blood sample or muscle sample to screen for known mutations, looking for common mutations first.
2. Can also look for rare or unknown mutations but may require samples from family members; this is more expensive and time-consuming.

http://mda.org/disease/mitochondrial-myopathies/diagnosis

 

[MyBelle]

Considering somatoform is a diagnosis of exclusion, BCH doctors could have done this biopsy to exclude mitochondrial disease.
In fact to properly diagnose somatoform BCH should have run a lot of tests on Justina to exclude possible physical reasons for her symptoms.

I'm pretty sure BCH knows how to "properly diagnose" a condition. BCH specialists aren't going to perform tests that they don't deem medically necessary. If Dr. Korson wanted his diagnosis to be taken seriously by other doctors, he should have performed the biopsy himself and not punted her off to another specialist at another hospital.

The doctor shopping is over and the door is now closed.

 

[gitana1]

I'm pretty sure BCH knows how to "properly diagnose" a condition. BCH specialists aren't going to perform tests that they don't deem medically necessary. If Dr. Korson wanted his diagnosis to be taken seriously by other doctors, he should have performed the biopsy himself and not punted her off to another specialist at another hospital.

The doctor shopping is over and the door is now closed.

Dr. Korson did not punt her off to another specialist. Again, the gastroenterologist he suggested they see was the same one who had been treating the child for over a year as part of her treatment for mitochondrial disorder:

In 2011, when her condition did not improve, he said doctors referred Justina to Dr. Alejandro F. Flores, a gastroenterologist at Tufts.
In 2012, surgeons considered removing Justina's colon but eventually performed a cecostomy, attaching a device to the colon that clears the bowels of fecal matter.


Flores called in Dr. Mark Korson, chief of metabolism. Justina's sister, Jessica, had been diagnosed and continues to be a patient of Korson, according to Pelletier. Justina was similarly diagnosed with mitochondrial disease. Korson treated Justina with a vitamin cocktail and various prescription medications.


Justina seemed to be doing well on treatments for mitochondrial disease until February 2013, when she got the flu," according to Pelletier. "When you have mitochondrial disease and get sick, it hits harder."
Justina was in pain and had stopped eating, so the family called Korson, who recommended Justina see Flores again, who by then had moved to Boston Children's Hospital, said Pelletier. http://abcnews.go.com/Health/advoca...state-pysch/story?id=22312907&singlePage=true

Also, as you can see from the above, it appears it was that same doctor, Dr. Flores, her gastroenterologist, who referred her to Dr. Korson in the beginning, which ultimately led to her diagnosis, not the reverse, as you are suggesting by stating that Dr. Korson "punted her off" to another doctor. In many cases, patients have various specialists who address different issues. No doctor shopping here that I see. Just specialists referring the child to other specialists to treat specific issues.

 

[Linda7NJ]

They are actually not text book examples at all. And that's been something that has added to my concern about this case.

I've read and studied all I can about medical abuse. In all the cases I've come across, not one has been a couple. In the literature, it appears that 99% of cases are moms operating alone. The rest comprise unrelated nurses and a couple dads for the most part, also acting alone.

The text book case is a mother with a medical background of some sort, who has an absent and/or passive husband.

I disagree.
Viewing each one separately, each has the qualities of medical abusers.
in this case, IMO we seem to have two narcissistic parents, a dynamic duo...Feeding off each other.... And the media feeding them both.


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[Linda7NJ]

Well, somatoform disorder disables people but mitochondrial can be fatal. If the child dies, mitochondrial would seem to be the more accurate disorder.



<modsnip>



Sure they do. When DCF opens or investigates a case, they track the child no matter where he or she goes, even out of state, until they close the case. DCF absolutely "follow" children they are attempting to protect.

Gitana, I respectfully disagree. IMO

Families with open cases sometimes move out of state without notice and nothing is ever done. Children often fall through the cracks with a move simply to another county within the state.

It would be impossible, in this particular case because of the medical component and high profile nature of the case.

IMO


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[MyBelle]

Also, as you can see from the above, it appears it was that same doctor, Dr. Flores, her gastroenterologist, who referred her to Dr. Korson in the beginning, which ultimately led to her diagnosis, not the reverse, as you are suggesting by stating that Dr. Korson "punted her off" to another doctor. In many cases, patients have various specialists who address different issues. No doctor shopping here that I see. Just specialists referring the child to other specialists to treat specific issues.

Many physicians who actually cared for her don't agree with you:

The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011.


Dr. Korson is a member of Tufts staff and so was Dr. Flores.

JMO, the door is now closed in both states. No more doctor shopping.

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

[MyBelle]

I disagree.
Viewing each one separately, each has the qualities of medical abusers.
in this case, IMO we seem to have two narcissistic parents, a dynamic duo...Feeding off each other.... And the media feeding them both.


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ITA. Notice how quickly the media has retreated now that the facts are known?

 

[Linda7NJ]

Somebody may have said this already, but the Tufts team had been treating Justina's sister for several years, a muscle biopsy sent off to 2 different labs confirmed Mito in her case. She was treated successfully for it. Mito can be genetic and the expert doctor's in this case believed there were enough symptoms, combined with her sister's biopsy confirmation to treat her for Mito. She apparently was doing well, had a set back when she came down with flu and had secondary symptoms, that is why she was taken to BCH.

Her downward spiral occurred before the flu symptoms... According to articles that describe the extreme fatigue and inability to walk to the school cafeteria.


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[jjenny]

ITA. Notice how quickly the media has retreated now that the facts are known?

Media retreated? Where? I have seen a whole bunch of articles on the case in the last several days alone.

 

[jjenny]

Her downward spiral occurred before the flu symptoms... According to articles that describe the extreme fatigue and inability to walk to the school cafeteria.


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She was videotaped ice skating just weeks prior to going to BCH.

 

[Linda7NJ]

She was videotaped ice skating just weeks prior to going to BCH.

Ok. Her downward spiral started after ice skating ...and before the "flu"

Did she actually even have the flu?




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[MyBelle]

Media retreated? Where? I have seen a whole bunch of articles on the case in the last several days alone.

Only media coverage I've seen surrounds the HHS announcement last week that they are working to shift custody over to CT and CT facilities.

The door is closing....imo

 

[Linda7NJ]

Only media coverage I've seen surrounds the HHS announcement last week that they are working to shift custody over to CT and CT facilities.



The door is closing....

Yep, seems like the "legitimate" IMO media has backed off.
Only fringe groups giving daddy air time these days.

Seems like his future career goals have suffered a major hit. (not that he noticed)


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[MyBelle]

Yep, seems like the "legitimate" IMO media has backed off.
Only fringe groups giving daddy air time these days.

Seems like his future career goals have suffered a major hit. (not that he noticed)


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I'm astounded these parents have anyone defending their deplorable actions.

I think both Tufts and BCH will wash their hands as soon as Justina is in a CT facility and maybe that was Tuft's intent all along....

JMO