Sick girl put in foster care.

[Rageaholic]

Link to story

I'm still trying to figure out what happened here, but it sounds like the parents wanted to treat their daughter for Mitochondria Disease (A very rare disease), but the fine folks at the Boston Hospital insisted that she had Somataform Disorder a mental disorder, and put her in a mental institution. Parents fight for their say, but the court not only refuses to here them, but is putting the girl in foster care.

WTF

[Sleepwalker]

Ehhh. The only doctor they have advocating for them has never actually treated the girl. I'm wondering where they got their diagnosis and medications from.

[s_stabeler]

frankly, we don't have enough information to know one way or the other. To be blunt, though? I am inclined to believe the hospital. Mitochondria disease is very rare, and to be blunt? is actually untreatable at the moment, so I am suspicious of the medications the family are proposing to use on the kid.

oh, and also, her symptoms don't match mitochondria disease as far as I can tell. red marks on her abdomen- that doesn't sound like an energy deficit ( which is the ultimate problem with mitchondrial disease- the body can't produce the energy it needs)

in short, the case is one of parents wanting to try (apparently) an experimental treatment for a very rare disease that the patient does not appear to have. The court could well be right to put her in foster care- ESPECIALLY as we only have the parents saying she hasn't improved.

[Rageaholic]

Ehhh. The only doctor they have advocating for them has never actually treated the girl. I'm wondering where they got their diagnosis and medications from.

Interesting. I still wonder if maybe the parents are right. The wikipedia article on Somatoform disorder mentioned that it can be misdiagnosed. If she's not recovering, I can't blame the parents for at least wanting to try a different method. It seems like one of those grey areas.

That said, I think putting her in foster care crosses a line.

[Andara Bledin]

Considering that she went into the medical system because she collapsed and the people who had been treating her haven't even determined that she has the disorder at all despite treating it for a year, I'm pretty sure that the parents aren't right. She was deteriorating before she ever got to the hospital; her deterioration was why she was in the hospital in the first place.

The mother appears to be committing Munchhausen by Proxy and her daughter is facilitating it because it makes her mother happy, and kids are really good at doing things that make their parents happy.

It's worth noting that foster care is actually off the table and the judge is looking into returning her to her parents under special circumstances, so the breathless headlines about some judge sending a sick kid to foster care are nothing but link-bait bullshit.

Article at Boston.com

[HYHYBT]

The thing that bothered me on seeing this a couple days ago was not letting the parents get a second opinion; it was then presented as their trying to do so being what triggered the whole mess in the first place. Which didn't make a lot of sense.

[Sleepwalker]

Yeah, the parents can run their mouth as much as they want to, secure in knowing that legal and ethical considerations prevent almost everyone else involved in the case from also doing so( a minor's medical treatment? Liability nightmare). Unimpressed. About the only place you hear more bullshit than a custody dispute is- o, wait. Nowhere.

[crashhelmet]

Ehhh. The only doctor they have advocating for them has never actually treated the girl. I'm wondering where they got their diagnosis and medications from.

The doctor quoted in the link is just a doctor that they asked about the condition. It's quite common to go outside of the involved parties to get more information specific to an illness, injury, or law.

As for the diagnosis and medications, she was being treated at Tufts Medical Center before she apparently got the severe flu and was taken to Boston Children's Hospital.

[s_stabeler]

and again- there is NO known treatment for mitchondria disease. Therefore, any treatment she was receiving was inherently experimental. (from what I've read, the only options at the moment are vitamins and antioxidants. Neither of which have much evidence they work)

so to be blunt? at least with the psychiatric care, there is some hope the girl will improve. If the parents are correct, the kid won't recover anyway

[Rageaholic]

To be fair, it didn't seem like she was getting much help at the other place either. I don't normally like it when parents put their kids fate in some obscure treatment (ie: denying medical care for religious reasons), but in this case, it sounds like they're dealing with a lot more unknowns than usual.

[s_stabeler]

parents say the kid is not improving, hospital she is at says she is. It's he said she said at this point. As I said, though, I'm inclined to back the hospital she is currently at, ( albeit I'm uncomfortable with how restricted her parents' access to her is) for the simple reason that, ultimately, if it IS Mitchondria Disease, there's not a while lot they can do ANYWAY- plus, to be blunt? there's the old saying : if you hear hooves, think horses, not zebra. It's far more likely to be psychostomatic than it is it be Mitchondria disease.

[Andara Bledin]

The hospital is fairly certain that it's at least partly a psychological issue. And if so, it's probable that the restriction on the parents is in part to ensure that they're not the cause. See my earlier comment about Munchhausen by Proxy.

[crashhelmet]

and again- there is NO known treatment for mitchondria disease. Therefore, any treatment she was receiving was inherently experimental. (from what I've read, the only options at the moment are vitamins and antioxidants. Neither of which have much evidence they work)

so to be blunt? at least with the psychiatric care, there is some hope the girl will improve. If the parents are correct, the kid won't recover anyway

Tufts Medical Center at Tufts University is one of the leading medical research institutions in the nation. It's not like she was being treated with holistic or homeopathic procedures.

And the latest update is the judge is now sending her back to Tufts. They are the group that originally diagnosed her as having Mitochondrial disease and started her treatment back in 2011

[s_stabeler]

a) this smacks of the judge caving to public pressure- that is, the kid is being sent to the original facility not as a medical judgement, but because of the media attention. If so it is a travesty.
b) there are two possibilities- she's getting the standard treatment for mitochondrial disease, which is more or less vitamins, which does almost nothing to help or she is recieving an experimental treatment, probably Protofection ( it's either protofection, or embryonic mitochondrial transplant)- which is barely even proposed, and thus, you would need to be absolutely sure that the patient has the disease. (or it is a safety study, but you would use someone healthy for that) therefore, if there was reason to suspect the symptoms are psychostomatic, then it is a good idea to rule that out first.
c) we STILL don't have much information- we don't, for example, know why the doctors suspected it was psychostomatic.

[HYHYBT]

so to be blunt? at least with the psychiatric care, there is some hope the girl will improve.

And how much psychological damage may be done if she's NOT mentally ill and they're treating her as if she were, to the extent of having to lock her up?