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.
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
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 aNone 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.
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 aNone 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.
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.
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 ...
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.
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?
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.
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.
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.
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.
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
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.
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?
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.
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.
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.
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.
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