Justina Pelletier Closer to Her Family After a Year in Psych Hospital

[alp227]

Last edited Tue May 6, 2014, 12:27 AM - Edit history (1)

Source: ABC

Justina Pelletier, the sick teen who for the past year has been in state custody under psychiatric care at Boston Children's Hospital, will be moved to a therapeutic facility in Connecticut under a plan to reunite her with her family, according to the Massachusetts Department of Health and Human Services.

Her parents, Lou and Linda Pelletier of West Hartford, Conn., have waged an angry and highly publicized custody battle for their 15-year-old and continue to fight the state.

Only allowed weekly supervised visits, they say their daughter was diagnosed with mitochondrial disease by a top doctor at Tufts Medical Center and her condition has deteriorated for lack of proper medical treatment. They also allege Justina has been “abused and sexually harassed” at the DCF facility where she is being treated.

Read more: http://abcnews.go.com/Health/justina-pelletier-home-conn-year-mass-psych-hospital/story?id=23594343&singlePage=true

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previous title, Justina Pelletier Goes Home to Conn. After a Year in Psych Hospital

[pnwmom]

1. Looks like a lot of face-saving for DCF, e.g., "requiring" the parents to get their daughter

treated at Tufts Hospital, the hospital they've been begging to take her to all along.

[magical thyme]

3. they need to do more than save face

Just last week, the head of DCF who has been mismanaging the Pelletier case was pretty much forced to resign after the death of 3 children in DCF care.

She's been temporarily replaced with someone from the Dept. of Motor Vehicles. Yeah, that makes sense. Cars. Kids. All the same thing, right...

Once they've got Justina safely back, they should sue Massachusetts from here to kingdom come.

[magical thyme]

2. unfucking real

"Pelletier may return home once her family meets these conditions: They must attend weekly visits at the Susan Wayne Center, follow the treatment plan outlined by Tufts Medical Center, participate in family therapy and continue to review her progress with DCF."

Um, that's the treatment plan she was on before you kidnapped her, assholes. Or are you admitting that Children's was wrong all along?

[NutmegYankee]

4. Pelletier Family Rejects Moving Justina To Conn. Facility

BOSTON — The family of Justina Pelletier, the Connecticut girl at the center of a lengthy custody dispute, on Monday rejected a reunification plan developed by Massachusetts officials that could place Justina in a residential treatment facility in her home state next week.

The family met with officials from the Massachusetts Department of Children and Families, including new Commissioner Erin Deveney, at 11:30 Monday.

After that meeting, a letter outlining the plan to move Justina was released by John W. Polanowicz, the Massachusetts secretary of health and human services.

In a 2 p.m. press conference, the Pelletiers denounced the reunification plan and accused Polanowicz of releasing the letter before they and their lawyer had a chance to see it.
http://www.courant.com/community/west-hartford/hc-west-hartford-pelletier-update-0506-20140505,0,5149241.story

This thing is as twisted as a soap opera.

[840high]

6. Very strange.

[McCamy Taylor]

5. This is how a Munchhausen by Proxy family might act, too, so I'm reserving judgment.

[pnwmom]

7. Do you think this family is smart enough to fool the specialists at Tufts

who had been treating the girl for years -- and also treating one of the girl's older sisters, who had a muscle-biopsy proven diagnosis of the same disease? (The doctor said he thought it sufficient to do a clinical diagnosis because the muscle biopsy wouldn't change the treatment and carries substantial risks for someone with a mitochondrial disorder.)

Are you aware that the girl had a stroke at age 7 (which would fit with the mito diagnosis); and a GI motility test that measured the activity in her intestine and demonstrated such a serious deficit that GI recommended surgery to install a port? And that after initially refusing to use the port, within a week Boston Children's had decided to use it after all? And that the judge has now put her care back in the hands of the metabolic specialists at Tufts -- the ones who made the mito diagnosis? Why would the judge do that if he thought Munchausen by proxy was a possibility?

The Tufts doctors weren't just acting on instinct and they weren't duped by the parents. They had years of documented problems in keeping with a mito disorder that led them to make their diagnosis.

Meanwhile, the psychiatrists at Boston Children had their diagnosis in less than 24 hours -- and after refusing to talk to the metabolic specialists at Tufts. And the psychologist who initially targeted Justina has written a paper saying that she believes 50% of children with unexplained medical symptoms actually have a somotic disorder . . . so she may have been predisposed to make that diagnosis.

http://www.mitoaction.org/blog/why-mitochondrial-disease-looks-nothing-medical-child-abuse

Why Mitochondrial Disease Looks Nothing Like Medical Child Abuse
By Christine Cox on 04/16/2014

As media coverage of the Justina Pelletier case has grown, so has the misconception that mitochondrial disease is closely correlated with medical child abuse and its predecessor diagnosis, Munchausen’s Syndrome by Proxy. On behalf of MitoAction and the mitochondrial disease patients we represent, we are extremely troubled by this development and wish to highlight the obvious differences between mitochondrial disease and medical child abuse.

SNIP

Mitochondrial disease is not easily confused with medical child abuse. It is a devastating, multi-system disease that frequently results in death. Patients suffer from a wide variety of symptoms depending on which part of the body has been affected by the disease, which is due to problems with the powerhouses of the cells. Mitochondrial disease also can be degenerative and progressive, especially when high-dose vitamin treatments and other medications are withheld. In contrast, children who are victims of medical child abuse generally get better when separated from their families.

SNIP

Mitochondrial disease is relatively rare, and several media reports have cited an older statistic that places the prevalence rate at 1 in 8,000. More recent literature shows that the prevalence rate of mitochondrial disease is actually much more frequent at 1 in 4,000, http://www.med.unc.edu/neurology/files/documents/child-teaching-pdf/Mitochondrial%20Review%20DiMaro%2005.pdf, and some physicians assert that mitochondrial disease is as common as 1 in 2,000.

In contrast, medical child abuse and its predecessor diagnosis, Munchausen’s Syndrome by Proxy, are exceptionally rare. . . . Thus, an ailing child is at least 50 to 200 times more likely to have mitochondrial disease than to be suffering from medical child abuse at the hands of his or her parents. . . . .

Mitochondrial disease affects multiple bodily systems at once, and therefore can be confusing to doctors who are accustomed to a medical system that compartmentalizes the body into discrete systems. It also is a good diagnosis to consider when symptoms do not fit a clear diagnostic picture, which is why mitochondrial disease is tested so often in cases that ultimately were the result of medical child abuse. However, once a family has a diagnosis of mitochondrial disease from a reputable physician, has documentation of other family members suffering from the disease, and has received successful treatment for mitochondrial disease, it is the duty of the hospital caring for the patient to obtain a complete history and speak with the treating physician who is familiar with the case. Had Boston Children’s taken that simple step, the course of the past fourteen months likely would have been much different for the Pelletier family.

SNIP

[magical thyme]

8. then why are they requiring Justina to be treated in Tufts program...

the very same doctors who were supposedly mistreating her before Boston Children's and DCF grabbed control? The same doctors that her parents wanted to take her to all along?

And why did DCF publicly announce their offer without even making it to the Pelletiers and their lawyer?

I doubt they Pelletiers are saying anything without the blessing of their lawyer. They're rejecting this offer because DCF is already tacitly admitting that Children's and they were wrong.

If think if the Pelletiers sign onto this "plan" that could let DCF off the hook for their wrongdoing.

Now that the head of DCF has been forced to resign due to lack of confidence in her after 3 children died in one month under their "supervision," not only by the general public but her own staff, the interim head and the staff caught up in the mess are just trying to get out of this situation with as few legal ramifications as possible.

[Sgent]

9. Agreed

Tufts turfed this patient to children's illegally (violation of EMTLA), OR they turfed the child to Children's because they suspected Munchhausen and were not setup to treat it. One Tufts doctor, who lost his privileges, is the one who treated the patient.

The parents, nor any hospitals involved (who cannot) have not released hospital records -- assuming the parents even have access to the psych records.

I'm very skeptical that the parents are pure driven snow in this one.

[moriah]

10. Uh, I thought the transfer to Childrens was because the kiddo's GI doc was practicing there?

The same GI doc who did her surgery?

Are you reading something I haven't?

[LisaL]

16. That's exactly right.

Her GI doctor moved from Tufts to Children's.

[LisaL]

13. What in the world are you talking about?

No Tufts doctor lost his privileges.
Tufts doctor got a job at Boston Children's.
Parents took the child there so she could see her old doctor.

[Sgent]

17. Follow-up

No Tufts doctor lost his privileges.

We just don't know. The doctor has said nothing, and adverse actions are not public. Additionally, he did lose his privlidges, but we don't know if they were voluntarily surrendered or not.

Tufts doctor got a job at Boston Children's.

True, and Boston Children's would have known about any adverse issue assuming it wasn't kept quiet.

Parents took the child there so she could see her old doctor.

Parents were advised by the Tufts ED to take their child to the children's ER. This is a violation of the EMTLA. The child should have been transferred by Tufts to Children's, or treated at Tufts. Redirecting a difficult patient out of your ER is illegal if you are able to treat the condition.

[LisaL]

18. That's absurd.

Children's is arguably assumed to be a better hospital (or at least as good as Tufts). Doctor got a job at Children's and left Tufts.
Kind of absurd to assume doctor went to arguably a better hospital because he lost his privileges at the old hospital. Why would Children's hire him if he lost privileges? Nobody ever reported he lost privileges as far as I can tell.
Furthermore, she was not at Tufts ER when she went to Children's.
She went from CT to Children's.
So what violation of EMTLA (whatever that is)?

[moriah]

19. No offense, but with all of the differing questions there.... do you have a source?

About the GI doc who did Justina's surgery losing privileges vs just transferring to another hospital?

Thank you.

[magical thyme]

22. link to source please? because your EMTLA (sic) claim looks like a load of crap

EMTALA is refusing to treat a patient because they can't pay. Furthermore, if a hospital ED is unable to stabilize a patient, it requires that they transfer the patient to a facility that can treat them. That is not the situation here at all.

In 1986, Congress enacted the Emergency Medical Treatment & Labor Act (EMTALA) to ensure public access to emergency services regardless of ability to pay. Section 1867 of the Social Security Act imposes specific obligations on Medicare-participating hospitals that offer emergency services to provide a medical screening examination (MSE) when a request is made for examination or treatment for an emergency medical condition (EMC), including active labor, regardless of an individual's ability to pay. Hospitals are then required to provide stabilizing treatment for patients with EMCs. If a hospital is unable to stabilize a patient within its capability, or if the patient requests, an appropriate transfer should be implemented.
http://www.cms.gov/Regulations-and-Guidance/Legislation/EMTALA/index.html

She went to Children's to see her GI specialist, on the recommendation of Dr. Korson, who coordinates her treatment with many specialists. They weren't refused treatment by Tufts. Due to the nature of her disease, she sees specialists within *and* outside of Tufts. For example, DCF accused the parents of refusing psychiatric treatment for her, but in fact she has a psychiatrist she had been seeing back in CT. Her current treatment plan -- the new one by Dr. Korson -- includes doctors from Tufts, Childrens and other healthcare facilities.

They ended up in Children's ER only because they traveled by ambulance due to her being very weak from the flu and due to traveling during a bad nor'easter. They expected her to be admitted there to be seen by the GI specialist who had been treating her.

We haven't heard details from the health care providers due to HIPAA.

[LisaL]

24. Exactly. In her case, patient requested the transfer to Children's.

so she could see her GI specialist who transferred from Tufts to Children's.
There was no violation of EMTALA.

[moriah]

11. Actually, this is very atypical for MSBP, particularly the vocal father.

http://www.webmd.com/mental-health/tc/munchausen-syndrome-by-proxy-topic-overview

Doctors or nurses may suspect a problem when:

A child has a repeated or unusual illness, and no reason can be found.
The child doesn't get better, even with treatments that should help. Symptoms only occur when the caregiver is with or has recently been with the child. But symptoms get better or go away when the caregiver is not there or is being closely watched.
The other parent (usually the father) is not involved in the child's treatment, even though the child's condition may be serious.
A caregiver suddenly changes doctors and lies about prior testing and treatment.
Normal test results don't reassure the caregiver. And he or she may be strangely calm or happy when the child's condition is getting worse.
The caregiver is seen (or videotaped or recorded) harming the child or causing symptoms.
Another child in the family has had unexplained illness or death.

In this case....

1) A reason has been found by one team of doctors, though rejected by the other team
2) The child has not improved in state care -- by many accounts, she's gotten worse
3) The father is an extremely vocal advocate
4) The decision to go to Children's was originally to see Justina's old GI doctor, the one who did her surgery, not to get a new doctor to review
5) No article has suggested the family was calm or happy when Justina's condition worsened a year ago while she was still in her family's custody
6) The family hasn't been charged with medical child abuse, and the other accusation of medical neglect when the mother showed reluctance about feeding tube insertion was dropped -- if they had any evidence like that, they'd have been charged
7) The other ill sibling's illness is explained by the exact same mitochondrial disorder that Justina was diagnosed with

I still believe that this family has been put into a position where they feel completely helpless and hopeless, because they can't win for losing. Accused of medical neglect for not being sure about a feeding tube, then being accused of medical child abuse partially because they advocated for feeding tube insertion at Children's (which was later found to be medically necessary). Try to see new doctors, and they're accused of doctor-shopping -- try to see the original doctor that did Justina's surgery, and a new doctor decides to overrule the old one.

Just how is a loving, non-abusive family supposed to react in these circumstances?

[LisaL]

12. DCF isn't even accusing the parents of having Munchausen by Proxy.

DCF claims Justina has somatic symptom disorder.

[moriah]

20. "Medical Child Abuse" is the new name for MSBP. They aren't being charged, but they were accused.

http://pediatrics.uchicago.edu/chiefs/cps/documents/aapmunchausen.pdf -- intersting little presentation. The new definitions make MCA diagnosable in almost any complicated childhood disease where the parents aren't in 100% agreement with the doctors and treat them like the little gods they think "M.D." behind their name turned them into.

I still think if they had any concrete evidence that with all the media publicity drawn to the case, the state would have arrested them.

Edit to fix link, cat got on keyboard at the wrong place.

[MosheFeingold]

21. "2) The child has not improved in state care -- by many accounts, she's gotten worse "

I'd sue the shit out of the new doctors for malpractice.

[LisaL]

23. The problem is, since parents don't have custody, they can not sue the new doctors.

It's a legal nightmare.

[MosheFeingold]

28. Eventually They Can

They are stripped of custody, but as parents they have legal standing to sue for "loss of consortium" regardless of custody situation.

Eventually, they could sue on behalf of the child, if not now (depends on the state).

(And yes, I am a lawyer.)

[msanthrope]

30. Justina can sue. nt

[LisaL]

14. Nobody is accusing them of having Munchausen by Proxy.

So where are you getting it from?

[magical thyme]

25. It's now called Medical Child Abuse. Parents were accused but not charged.

I think it would be hard to charge them with Medical Child Abuse when they were following Dr. Korson's program for her, and Childrens own GI specialist had inserted the port. That was the surgery that Children's was claiming was unnecessary.

Of course, after a week of trying to force her to excrete on her own -- something she was unable to do due to the effects of her mitochondrial disease -- they suddenly decided maybe she needed the port after all.

[LisaL]

26. Very scary that parents can be accused of medical child abuse for following reputable doctor's

treatment plan. Because if they had not followed the treatment plan, they would be accused of medical child neglect.

[magical thyme]

27. which, iirc, had gotten them into trouble in the past in CT

I remember reading that at one point the mother hadn't been tube feeding as instructed because of the difficulty of it (for Justina), and she got into trouble for that. And before that, with the older daughter, she had been accused of "doctor shopping." So it is no wonder the parents are very assertive about this, and very stressed. They've been down this road and they certainly knew more about their daughter's illness than a 7 month intern planning to specialise in neurology.

I suspect the state of CT has been unwilling to get involved because they went down this road with the older daughter, who ultimately was definitely diagnosed with Mito via muscle testing. Maybe they don't want to end up with egg on their faces again, and maybe they don't see any reason to bail MA DCF/Children's out of their self-inflicted wound.

With the 1st case of a difficult to diagnose disease, that was understandable. But with a disease that can be familial and has been definitively diagnosed in the older daughter, and the younger daughter is presenting with clusters of symptoms that correlate with the disease, a presumptive diagnosis makes sense. And given the positive response to treatment for the disease, there is no reason to look further.

Children's behavior in this -- in not even attempting to contact Dr. Korson -- has been shocking to me. I often get calls from the bigger hospital an hour down the road asking for our test results when we've transported critically ill patients from our ED to them. I would expect them to seek all information already available. I also have called out to other hospitals and clinics to give critical results for longer tests (eg, positive blood cultures).

[LisaL]

29. And now DCF insists parents have to follow Tufts plan?

And here I thought "medical abuse" was the parents doing un-neccesary procedures to her at Tufts?
And what would Tufts be treating her for? They diagnosed her with mitochondrial disease, not somatoform. Yet DCF is insisting she has somatoform, not mitochondrial disease.
The mind boggles.

[magical thyme]

31. the judge is tacitly admitting that Tufts was right all along

even while overtly stating in his most recent 4-page finding, in which he granted the Commonwealth of MA permanent custody and ordered Tufts to resume planning her treatment, that he believes she has an extreme, resistant-to-treatment form of somatoform disorder. Like a judge is qualified to make a diagnosis... And like he has a clue what he is writing about. Frankly, he should be disbarred.

I also noticed in that 4-page ruling, which he made public, he did not once mention "medical child abuse" as the reason for grabbing custody of Justina. Instead, everything he wrote boiled down the the parents were unfit parents because they were rude and mean to Bostons and DCF staff.

Never mind that those staff accused them of child abuse, withheld critically needed treatment from their daughter, blew off Tufts by not even consulting with them, etc.

[LisaL]

32. I agree with you on all points.

In his ruling, judge never mentioned anything about medical child abuse. His problem with the parents is that they are not being nice to DCF employees.
And since judge doesn't have an MD, why does he think himself qualified to claim that she has somatic symptoms disorder as opposed to mitochondrial disease?

[LisaL]

15. ABC changed the title of the article.

No wonder. It was very misleading. DCF plans to send her to a facility in CT, not home.