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(ABC)   Tufts Medical Center says a teenager has mitochondrial disease. Boston Children's Hospital disagrees--by declaring the symptoms psychosomatic, taking her from her parents, and denying her any medical treatment except to say it's all in her head   (abcnews.go.com) divider line 224
    More: Followup, mitochondrial disease, Tufts Medical Center, Children's Hospital Boston, foster care  
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8900 clicks; posted to Main » on 25 Feb 2014 at 6:47 PM (21 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2014-02-26 08:05:16 AM

washington-babylon: Jument: czetie: Does mitochondrial disease prevent her from using the Force?

I was going to say "why doesn't she just force choke her way out of it"...

You know who else had a rare cellular disorder? Nope, not him. Nope, wrong again. Maybe this will help:

[static3.wikia.nocookie.net image 220x328]

/Alma Wade is one of those truly scary characters you will always remember.


Jesus dude, that was one of a very few games that scared me. Got some good jump scares from a few of the early Resident Evils (Now I just expect those Goddamn zombie dogs to jump through every window) But Alma....holy fark. Two of the most notable experiences where having her spider-run at me in that dark tunnel and when going down a ladder you turn around, nothing there, look down for a second, and then when you look back up BAM! there she is.
That scene here
 
2014-02-26 09:24:48 AM
Boston Children's Hospital said in a prepared statement to ABCNews.com earlier this month that they "acknowledge the tremendous efforts of our staff in caring for this patient. We are proud of their work and positive impact on the patient."

Wait, wait, wait.  You snatch a kid away from their parents, remove their medical treatment, and keep them locked away, and this makes you proud?

Worthless shiat stains is what they are.
 
2014-02-26 09:28:26 AM

MythDragon: washington-babylon: Jument: czetie: Does mitochondrial disease prevent her from using the Force?

I was going to say "why doesn't she just force choke her way out of it"...

You know who else had a rare cellular disorder? Nope, not him. Nope, wrong again. Maybe this will help:

[static3.wikia.nocookie.net image 220x328]

/Alma Wade is one of those truly scary characters you will always remember.

Jesus dude, that was one of a very few games that scared me. Got some good jump scares from a few of the early Resident Evils (Now I just expect those Goddamn zombie dogs to jump through every window) But Alma....holy fark. Two of the most notable experiences where having her spider-run at me in that dark tunnel and when going down a ladder you turn around, nothing there, look down for a second, and then when you look back up BAM! there she is.
That scene here


Thank you! I was looking for that scene. I have to confess, that was enough to make me stop playing for a bit. Scared the crap out of me, especially since I was playing in a darkened room due to a buddy's suggestion. I damn near crawled out of my skin when that scene happened.
 
2014-02-26 09:41:36 AM
I'm always so leery about the MA DCF.  Between the kids who are not protected when they so obviously should have been, to taking kids away from their parents for very minor things, kids drying in their custody, and then this...

http://bostonherald.com/news_opinion/local_coverage/2014/02/unlicens ed _dcf_approved_therapist_faces_teen_sex_assault

Makes you have such faith that this department really has their stuff together...
 
2014-02-26 09:42:52 AM

nyseattitude: bborchar:

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a

None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.


Out of curiosity, do hospitals let inpatients self-administer their own medication? I was under the impression that the hospital takes control of that while the patient is hospitalized to ensure that they can keep complete track of medication administration, but I'm not sure if that's universally applied.
 
2014-02-26 09:44:24 AM
RavenOnyx:

I have two daughters with autism.

 Our previously-neurotypical son had a tonic clonic seizure a year ago and was diagnosed - through Children's - with Juvenile Myoclonic Epilepsy.


Please stop having kids. You have farked up genetics.
 
2014-02-26 09:51:28 AM

fiddlehead: nyseattitude: bborchar:

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a

None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.

Out of curiosity, do hospitals let inpatients self-administer their own medication? I was under the impression that the hospital takes control of that while the patient is hospitalized to ensure that they can keep complete track of medication administration, but I'm not sure if that's universally applied.


No, especially not psych wards.  They administer all of the medication and watch to make sure that it is taken.  Unauthorized needles in a psych patient's room is about the biggest no-no you can do.
 
2014-02-26 10:07:17 AM

beaverfetus: Just to throw some gasoline on the fire/ supply some food for thought:

After Crohn's disease was described at Mount Sinai Hospital by Dr. Crohn, many Crohn's suffers were found to be currently admitted to inpatient psych wards for unexplained (presumed at the time to be somatiform) abdominal pain.


Inpatient surprises me.  An errant psych diagnosis when you have an unidentifiable medical issue does not.  Since symptoms that don't match a diagnosis usually are psych issues doctors will tend to assume anything they can't identify is psych.
 
2014-02-26 10:26:21 AM

omnimancer28: TheBeastOfYuccaFlats: ActionJoe: apparently the daughter has gotten worse.

The only ones saying the daughter has gotten worse is the parents, who have no reason to say she's gotten any better, obviously.

Given that HIPAA (two "A"s, one "P", folks) prevents the hospital from discussing the details of treatment to the public, it's pretty clear that this article was sourced almost entirely from the family's claims.  Not really good reporting.

The amount of obvious hyperbole on the part of the parents and their legal team is impressive, though.  Given their description of supervised visits, I'm surprised they didn't an in a "detail" of how the DFS supervisors were armed (there were a half dozen DFS employees at every visit?  really?  social services departments are notoriously understaffed, no one is sending more than one or two, max, to these visits) with big scary guns and stared at them menacingly while summoning demons, who were tasked with keeping the child sick.

This.

You have to wonder why the family is bringing in "additional first amendment lawyers" to impose gag orders on anyone and everyone involved in this case.  Anything that has to do with their child's diagnosis would be protected by HIPAA.  What are they trying to keep from getting out?


Aestatis: legion_of_doo: mongbiohazard: It's a genetic disease... isn't there a test for this which could clear the whole thing up? I mean, instead of guessing as to whose diagnosis is the accurate one can't we just use science? Is there no test for a mitochondrial disease?

Mitochondria are remnants of our ancient microbial past. They are symbionts with their own genetics.

The mitochondrial DNA is fully inherited from the egg producer (i.e. the one with the womb and vajayjay). People can and do sequence that DNA.

That being said, it totes be decades since i took genetics. To say people fully understand the code would be kind of a big assumption, though. Even if the kid doesnt have a disease on the list doesnt prove a lack of disease.

I work in a lab that focuses on mitochondria.  It's shown that 1 in 5000 people have a genetic mitochondrial defect involved energy generation; it's estimated that 1 in 2000, maybe more, people do.  Mitochondrial DNA encodes for 45 genes; mitochondria have over one thousand proteins.  The vast majority of proteins in mitochondria are found on nuclear DNA, and we've had a really rough time tracking down which genes are critical.  Recent work has elucidated a lot of the genes involved, but we're finding new ones regularly.

Mitochondrial disease is special.  Most doctors aren't trained in it; it isn't something covered in most general medical doctor courses.  Patients are special; most have good days and bad days, they deal with a lifetime of attempted treatments, no cures, and no treatments that alleviate all of the symptoms.  They struggle to have the basic energy to live, and this results in a wide range of symptoms that can change over time.  Parents who have kids with mito diseases have a new set of problems:  No one knows what mito disease is, including many doctors, so they constantly have to explain why their snowflake needs special food, or needs a nap regularly, or why they're in a wheelchair today and walking tomorrow.  I've spoken t ...


Question:  is there a serious downside to treating the kid for mito, in case the first Tufts doc was on the right track?
 
2014-02-26 10:41:06 AM

LowbrowDeluxe: Almost every time we've ever had a case anywhere similar to this we get a couple of days of OMG OUTRAGE HOW DARE THEY DOWN WITH THIS SORT OF THING and then it turns out the parents are giant humungous massive scumbags of one order or another.

Also, anyone who manages to 'faint' in court isn't doing herself a lot of credit in terms of making me believe her daughter's condition isn't psychosomatic.


No idea who's at fault here (whynotboth.jpg)  but a federal judge I know had a hardened drug dealer/killer (mid-thirties male, in good shape) pass right out at getting a ten year sentence, so, not really dispositive either way.

Stress does weird things to people, is all I'm saying.
 
2014-02-26 10:44:14 AM

omnimancer28: TheBeastOfYuccaFlats: ActionJoe: apparently the daughter has gotten worse.

The only ones saying the daughter has gotten worse is the parents, who have no reason to say she's gotten any better, obviously.

Given that HIPAA (two "A"s, one "P", folks) prevents the hospital from discussing the details of treatment to the public, it's pretty clear that this article was sourced almost entirely from the family's claims.  Not really good reporting.

The amount of obvious hyperbole on the part of the parents and their legal team is impressive, though.  Given their description of supervised visits, I'm surprised they didn't an in a "detail" of how the DFS supervisors were armed (there were a half dozen DFS employees at every visit?  really?  social services departments are notoriously understaffed, no one is sending more than one or two, max, to these visits) with big scary guns and stared at them menacingly while summoning demons, who were tasked with keeping the child sick.

This.

You have to wonder why the family is bringing in "additional first amendment lawyers" to impose gag orders on anyone and everyone involved in this case.  Anything that has to do with their child's diagnosis would be protected by HIPAA.  What are they trying to keep from getting out?


The gag orders are almost certainly coming from the judge, because the patient is a minor.
 
2014-02-26 11:13:07 AM

PunGent: omnimancer28: TheBeastOfYuccaFlats: ActionJoe:

Question:  is there a serious downside to treating the kid for mito, in case the first Tufts doc was on the right track?


That's a very good question, and something that hasn't been addressed here.  Mito encompasses a lot of different diseases, and I don't know which form this kid has.  Even mito diseases with the same name can have very different progressions in different kids.  There are no cures and the treatments are mediocre.   One common theme I've heard from talking to patients is how variable the disease is.  You can be fine for a year or even more, and then relapse back into regular hospital visits.  You can usually walk but you're sometimes stuck with just a wheelchair for getting around.  Interrupting treatment could trigger symptoms, or even make symptoms worse, and it could be that resuming treatment in the future returns them to normal.  Or they could end up stuck with a new normal, even on treatment.

As far as whether treatment is dangerous?  The most common I've heard is a cocktail of antioxidants, vitamins, and other necessary nutrients.  There's a clinical trial right now that shows a lot of promise, though.  It could be she had a feeding tube or other kind of 'support' systems that were more surgical in nature, though, and that kind of invasive practice should be avoided on healthy kids.
 
2014-02-26 12:34:49 PM

nyseattitude: squirrelflavoredyogurt: Thunderpipes: All power to the state! Individuals have no rights! Woo hoo! Liberalism!

Liberal Vermonters just got a 2 year old killed because they gave her back to a mom that previously broke her leg. Here the state won't even let a second opinion be heard?

Maybe we should let the government take care of everything, they are so good at it.

So when doctors suspect child abuse and act to keep a child from being abused it's the evil governments fault?

I have an idea, how about we hire more and better trained workers who can actually do their job instead of kneecapping them with tax cuts for the 1% and then complaining that they just can't do anything right?

"Child abuse" in Mass is a highly sensitive topic. A few cases where blatantly ignored a while back and since then it turned into a "zero tolerance" policy. If you don't report it and something was/is wrong you are in a lot of trouble so now anyone, even anonymously, can report it. That turns it into a legal liability and nobody wants to be sued over it. The "zero tolerance" policy puts everyone, schools, medicinal, athletics and anyone you can imagine on the edge. In all reality you could report someone over a "gut feeling" and the guardians or parents are guilty until proven innocent.


Cool story bro. This however wasn't a case of someone with a gut feeling, it was a case of doctors who examined the child. I suppose you have another cool story about doctors aren't qualified to diagnose medical conditions though too right?

Child abuse happens everywhere and sometimes people make mistakes and it isn't caught. This however is exactly not that type of case, it's not a neighbor with a grudge, it's a farking doctor. Doctors in Massachusetts are mandated reporters of suspected child abuse, and aren't allowed to report it anonymously.

http://www.mass.gov/eohhs/consumer/family-services/report-child-abus e. html
 
2014-02-26 01:08:45 PM

hardinparamedic: MyRandomName: So Tufts is a fake hospital to you. Got it.

Boston Children's Hospital is world renown for it's immunology, cancer, genetics, and metabolic disorder research and treatment team.

Tufts is renown for it's Pediatric Trauma history.


Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.
 
2014-02-26 02:57:13 PM

BGates: Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.


People have repeatedly said that, but I have seen nothing from the doctor in question or the hospital on this. Every source that has this as a statement has been from the family themselves.
 
2014-02-26 03:34:12 PM

hardinparamedic: BGates: Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.

People have repeatedly said that, but I have seen nothing from the doctor in question or the hospital on this. Every source that has this as a statement has been from the family themselves.


Haven't been able to find a source on whether or not the BCH doc believes mito is real.

For what it's worth, one of the article's I read mentioned that the doctor at BCH that diagnosed her with Munchausen's by proxy had only been practicing medicine for 7 months.

Gee, imagine that - you get out of your residency and almost immediately run into a rare, induced psychological condition, just like you read in all those textbooks while you were in school.

What are the odds?
 
2014-02-26 05:02:17 PM

hardinparamedic: willfullyobscure: somatoform disorder is an outdated, blanket diagnosis no longer used in current psychological evaluation or psychiatric care. it means, literally, "you feel stuff that isnt real".

Um, what?

Somatoform Disorder is included in the DSM-V


That's Somatic Symptom Disorder and if you either knew anything about the topic or bothered to read your own link you'd see the critical differences between the two and why Somatoform Disorder is out of date.


"Several important changes have been made from previous editions of DSM. The DSM-IV disorders of somatization disorder, hypochondriasis, pain disorder, and undifferentiated somatoform disorder have been removed, and many, but not all, of the individuals diagnosed with one of these disorders could now be diagnosed with SSD. The DSM-IV diagnosis of somatization disorder required a specific number of complaints from among four symptom groups. The SSD criteria no longer have such a requirement; however, somatic symptoms must be significantly distressing or disruptive to daily life and must be accompanied by excessive thoughts, feelings, or behaviors.

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.
"


If this was the model that was being followed, she would be receiving ongoing medical treatment as well as a her delightfully refreshing stay at Arkham. But she's not.

They locked her in the nuthatch and are denying her necessary medical treatment based on an outdated model of a phony diagnosis and ignored existing medical care, treatment and diagnosis because reasons.
 
2014-02-26 05:21:03 PM

willfullyobscure: They locked her in the nuthatch and are denying her necessary medical treatment based on an outdated model of a phony diagnosis and ignored existing medical care, treatment and diagnosis because reasons.


You might want to amend that with "according to her parents".
 
2014-02-26 05:36:32 PM

bborchar: 1. If this is a rare, genetic disorder with devastating consequences, wouldn't this child have exhibited those symptoms from childhood on? It's not something that would just strike a year ago after the child was normal for 13 years, right?


There are genetic diseases that sit around like a time bomb, and only manifest at a certain point in life.  Huntington's Corea comes to mind.  A genetic disease that wasn't noticable until adolescence sounds quite plausible to me.
 
2014-02-26 05:49:00 PM
Considering BCH refuses to allow a second or third opinion, that Tufts already diagnosed mitochondrial disorder, AND she has a sister with the disorder, I'm siding with the parents for the time being. Some flavor of CPS being involved doesn't help either. WTF @ legalized kidnapping by the government/court.
 
2014-02-26 06:38:43 PM

BGates: hardinparamedic: MyRandomName: So Tufts is a fake hospital to you. Got it.

Boston Children's Hospital is world renown for it's immunology, cancer, genetics, and metabolic disorder research and treatment team.

Tufts is renown for it's Pediatric Trauma history.

Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.


You can be surprised at Doctors, a lot of them are very very messed up with farking god complexes. Apparently, there are still doctors out there that believe Celiac disease doesn't exist, not that the GF diet has become trendy among the hippie set, but that Celiac doesn't exist at all. This despite various tests proving that Celiac is a real condition. They are in the extreme minority now but it shows all the schisms that exist in the medical flied and the biatch fights that result.

My Dad's a doctor and I worked at a Mental Health and Addictions hospital, so I know how Doctors think. I'm going to preface this by saying while most Doctors may be farked up in the head it doesn't mean they don't still care about their patients.
 
2014-02-26 06:49:59 PM

willfullyobscure: They locked her in the nuthatch and are denying her necessary medical treatment based on an outdated model of a phony diagnosis and ignored existing medical care, treatment and diagnosis because reasons.


A floor hospital room is not the "Nuthatch". Sorry. No sell. And again, everything is  according to her parents.

Elegy: For what it's worth, one of the article's I read mentioned that the doctor at BCH that diagnosed her with Munchausen's by proxy had only been practicing medicine for 7 months.


Do you have a source for that, or a link to the article? Because I find it hard to believe a first year fellow in a Pediatrics Teaching hospital would be diagnosing that without involving their attending or a psych attending.

shortymac: You can be surprised at Doctors, a lot of them are very very messed up with farking god complexes. Apparently, there are still doctors out there that believe Celiac disease doesn't exist, not that the GF diet has become trendy among the hippie set, but that Celiac doesn't exist at all. This despite various tests proving that Celiac is a real condition. They are in the extreme minority now but it shows all the schisms that exist in the medical flied and the biatch fights that result.


Please provide a citation of this claim from the Doctor himself, or from Boston Children's - or for that matter from any party other than the parents.
 
2014-02-26 06:52:29 PM
So what's with people capitalizing 'doctor(s)'?
 
2014-02-27 12:01:59 AM

CRtwenty: Wake Up Sheeple: CRtwenty: Wake Up Sheeple: They won't let the family take care of her because she was brain dead, now mostly dead. Every week, the parents get to see an embalmed corpse in a viewing area of a specially set up backroom in a mortuary.

The parents themselves are under court-ordered psychiatric watch, but cannot be confined against their wills as long as they are non-violent.

The parents see their child getting worse because the body is slowly decaying.

Um did you even read the article this has nothing to do with Jahi McMath? This is a completely different situation in a completely different state.

Huh? Why'd you bring up Jahi McMath?

The girl in tfa isn't brain dead.


How would you know? The hospitals can't talk about it and the case is sealed. We've only heard from the two parents who would normally have already regained custody. Something is very, very wrong.

Based on the available "evidence" my interpretation is just as plausible.
 
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