Boston Children's Hospital Take Special Needs Child from Parents

But here we need to know the best diagnosis and treatment plan. DCYF fuck ups don’t come in to it.

A year ago the parents were convinced that the kid would die if her meds were removed. She’s not dead so they were wrong about that. Maybe they’re wrong about the somatoform disorder part also.

If they are wrong about the somatoform disorder, they’re hurting their own daughter by cranking the conflict up to eleven. Conflict among loved ones and caretakers makes kids more neurotic and crazy.

I started to read up on mitochondrial disorders but it is getting tl;dr for me. Because an older sister is affected (allegedly), maternal inheritance seems the most likely cause. With maternal inheritance all children are affected, as well as the mother, but to varying degrees. You get your mitochondria from your mother and that’s where the bad gene is located, outside the nucleus of your cells. But some mitochondria basically work fine even with the bad gene.

Autosomal recessive is another possibility. That means mother and father both have one bad gene and 1/4 offspring get both bad genes, causing illness.

A muscle biopsy can help make the diagnosis. But they didn’t do one for this child, maybe because she fit the symptom pattern and an older sister had the muscle biopsy. Also, the test has an error rate.

Bleh, this is why people smarter than me should work on these problems.

There a point where one can only trust a specialist. You take your chance. This case always seemed more of a misdiagnosis on either end or even an academic turf war than a science vs. woo kinda thing.

I think there is a gray zone between woo and science.

The woo tribe looks for legit doctors in certain areas who might say something reasonable that can be pushed to justify something less reasonable. When they find such a doctor, they love bomb the guy. If the poor sod doesn’t know who he is dealing with, he might find himself invited to give a talk at Autism One or some other conference where a few fringe players show up

There was an example here of a psychologist who wrote a paper talking about the problems with the DSM. She argued that the way symptoms are clustered together as diagnostic categories is problematic. Most psychiatrists probably agree. But her paper was picked up by the CCHR and used as a reference in some important court case to convince a judge that mental competence was beyond a psychiatrist’s ability to describe. Or something like that. Afterward that psychologist was all, “Holy shit I never intended for my argument to be stretched that far."

In the autism realm, which overlaps with other developmental problems, there’s a busy industry intent on re-defining emotional and intellectual problems as something fixable with special diets, supplements, detox, and avoiding chemicals. I did read that the diagnosis of mitochondrial disorder is one of those diagnoses that is getting a buzz because you almost can’t say a person with developmental problems *doesn’t* have it. Just like PANDAS and chronic lyme and chemical sensitivities and food allergies.

My son is what used to be called Asperger's and now re-defined on the Autism spectrum. It was years before doctors agreed on what was wrong with my son.

What has not been discussed is the ER error rate in Emergency Room/Acute Care which the mean average is 23.5%
Acute care doctors are generally looking to keep you alive until you see a specialist, that is what they do. They don't look beyond that generally. That is why they want you to see someone when you are discharged to get you off their watch.
The same applies for being an in patient in a hospital. They want you stable and kicked as soon as possible (if nothing else for the insurance issues)

If I understand correctly what I have read, they were at the ER

Here is the source on ER error rates
http://www.patientsafetyauthority.org/ADVISORIES/AdvisoryLibrary/2010/Sep7(3)/Pages/76.aspx

and
http://www.cjem-online.ca/v3/n4/p271

Same thing here.
One doctor will tell you one thing, one will tell you another. Parents don't have time to do anything but go with the doc who spends the most time with them or has the best rapport with the kid.

IMO, Even if the mitochondrial doc is full of shit, he works for an established medical clinic and short of him pulling out voodoo dolls and calling the orisha, I cannot blame the parents for trusting him.

I certainly think there were better ways of handling this than what was done.

I agree. I think the parents got stuck in the middle. The doctors need to do more to prevent that from happening. They need to get clear about what the evidence says and what is opinion where experts may disagree.

I just added this up, but it took 8 years before my son's doctors agreed on his diagnoses. Up until the time I won my medication battle, he had gained a tremendous amount of weight from side effects. When he was 13 he was 287lbs. He is now 18 yrs and weighs 160 and runs 10k everyday

Doctors have their practice....but it isn't perfect. To let this escalate to this level suggests to me that the Boston Children's doctor let his ego get in the way of listening. You can deescalate so much in life by simply hearing someone out and being open to changing your own course.
Based on my own experiences, I can see how a US doctor would do this...to which I disagree

That article from Dec I linked to paints a picture. Several doctors had worries. While they’re putting the pieces together, the father decides to throw a tantrum. He doesn’t get that the doctors can’t just release his daughter until the matter of somatoform disorder is addressed.

Protip: Once you go to guns in any relationship, now you got a bunch of slow moving legal types slowing everything waaay down and costing money. I mean, maybe years of bullshit. So do not go to guns early. Try to stay reasonable and cooperative.

I have a hunch you can’t fix somatoform disorder if the parents aren’t on board with the idea. You can imagine the secret conversations going on between the mother and the child here: “I know, honey. They think it’s all in your head but we know when you get tired it is the mito acting up. If only we could give you your special vitamins like the good doctor recommended you would improve. But you just have to stay strong even though you are weak. Mommy and Daddy love you and are fighting The System to save you."

So yes, if the doctors could have avoided a stand off, the child would probably have been better off, even with all the meds and surgeries.

I know doctors have a “practice.” But some of them are scientists who publish in journals. So there’s evidence to guide them. Of course there are gray areas where reasonable people may disagree. But that doesn’t mean everything is always gray all the time. If that were the case, then we need to STFU about Narconon, which has some board certified MDs in support.

I agree about docs. I have had some shitty experiences with doctors myself over the years. I used to housebreak them as a 'simulated patient' at a big medical school. About 40% or so are earnest, empathic and should be docs, 40% or so are tech wonks who have their place in surgery and research, but the last 20% give or take are selfish bastards who are in it for their egos and whatever glorifies that in the end. I can never look at docs with the same awe filled trust that many people have for the profession.

I am sorry to hear about your family's trials. I was lucky, my mother (the first to see something wrong with my kid quite early) was in health care and knew how to work with/ fight the system. With early childhood intervention, she managed to keep him off medications throughout his childhood. He didn't start talking much until 3 or reading until fifth grade but now he's more literate than most, reading stuff like Steinbeck and Pynchon just for fun. He's now 22 and is now off 'serving his country'. He wants to be a writer when he gets out. And he will be a great one.

Sounds like your kid has a good shot at life, I wish you guys luck!! .

Like most things theses days, this sickens me.

Perhaps if the diagnosis came with a clear justification (which I doubt because, for me, it seems as though the docs' side is radiating as much irrationality as the parents' side idk), things would've turned out differently?

Ah well.

Necromancy.

You know the dad called 911 and reported his daughter had been kidnapped by Boston Children’s Hospital because they didn’t want to release her before they’d completed their evaluation?

Protip: When doctors are concerned you might be crazy, try to act not crazy.

medical facilities are becoming very dangerous places for parents to take their children. In Illinois, if your child is having problems consuming formula and you take them to the doctor because they keep throwing it up, you run the risk of the doctor calling child family servicesand claiming that you are starving your child. And DCFS loves poor people that can't afford an attorney, so they can appoint you one in their kangaroo court system, that feeds you to the wolves instead of properly representing you.
Family services all over the USA have become corrupt unjust child trafficking organizations that persecute the poor. In Illinois, if you get into the system, they want women to wear dresses to visit their kids in some areas, and try to force people into going to church and accepting Jesus as part of the requirements to get your children back. Investigators twist facts and twist statements in order to make situations appear worse than they are. if you can't afford an attorney your kids are gone, even without grounds to take them, they will claim they have grounds unless you can afford an expensive attorney to prove otherwise. It is a system where as a parent, you are guilty until proven innocent, and without an expensive attorney, there is no proving your innocence.

CPS is a crock. As a special education teacher who has seen many horrific situations, CPS has NEVER acted. Hearing about this Boston's Children's Hospital incident intensifies my anger. We are going backwards when it comes to human rights. Not only do I foresee sterilization coming back, but I see a holocaust coming with Obamacare.

Statement from the first link:

/snip/
I knew that BCH’s big donation day was coming up, and that most donors give online. I felt that to have sufficient influence to save Justina from grievous bodily harm and possible death, as well as dissuade BCH from continuing its well established pattern of such harmful “parentectomies,” I’d have to hit BCH where they appear to care the most, the pocket book and reputation. All other efforts to protect Justina weren’t succeeding and time was of the essence. Almost unbelievably, they kept their donation page on the same public network as the rest of their stuff. Rookie mistake. To take it down, I’d have to knock the whole hospital off the Internet.

I also knew from my career experience as a biotech professional that no patients should be harmed if Boston Children’s was knocked offline. There’s no such thing as an outage-proof network, so hospitals have to be able to function without the Internet. It’s required by federal law, and for accreditation. The only effects would be financial and on BCH’s reputation.

The network was strong, well funded, but especially vulnerable to a specific attack. Apparently BCH was unwilling to architect around the problem. I see such laziness often in my work, and it leaves our nation vulnerable.
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Interesting. Helped clears up many of the questions I had.
And lookie who is prosecuting the case.
Fucking Carmen Ortiz. Yep, same person that went after Aaron Swartz.

I felt all kinds of rage. Until this update, I somehow missed out on this past years developments, how? idk.
I was happy to see that Tor is representing him. He's also representing Lauri Love. It's all crazy. Ortiz the nightmare prosecuting another anon while Tor represents him and also Lauri- who said he participated in #Oplastresort following Aaron's death.

Small horrible world sometimes. Meanwhile, the CFAA, the outdated crap that is is, remains unchanged.

I didn't see anything in the hacker's story that I didn't already get from the CCHR nurse's account.

Seems like a bad idea for Anonymous to attack people on the basis of "the doctors are evil!" statements from people who sound like Scientology doing black PR.