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Vagueness Disorder

November 25, 2013 permalink

Teenager Justina Pelletier was diagnosed with mitochondrial disease. When she developed the flu, parents Lou and Linda Pelletier sent her to Boston Children’s Hospital for the best treatment. But the hospital rediagnosed her condition as the vaguely defined somatoform disorder and got DCF to terminate the family's parental rights. The girl is now in legal limbo, separated from her parents at the moment she needs them most.

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Hospital Holds West Hartford Girl For 9 Months After Parents Argue Diagnosis

It’s a medical “mystery” that has left a Connecticut family baffled and heartbroken.

After a long history of medical problems, a West Hartford teenager is now “trapped” inside a hospital with seemingly no way out.

FOX CT spent the past few months investigating the emotional case.

It has been a bitter custody battle, and nine months after it started, it’s still going on.

In December 2012, Justina Pelletier was an active 15-year-old girl who would go ice skating, laughed and spent time with her family.

But just two months later, her family says their nightmare began. “[Exhales] It’s beyond any wildest nightmare that you could think of,” says Justina’s father, Lou Pelletier.

Her longtime West Hartford psychologist has also been following the case.

“It’s the most bizarre situation … I’ve ever been involved with,” says Dean Hokanson, the clinical psychologist who has worked with Justina the past five years.

Justina was diagnosed with mitochondrial disease a few years ago. It’s a genetic disorder that can cause loss of muscle coordination and weakness.

Despite that diagnosis she lived a normal life.

But last February, she also got the flu and was admitted to Boston Children’s Hospital to see her specialist.

Almost immediately, a different team of doctors delivered a different diagnosis, questioning the original diagnosis of mitochondrial disease.

“They came in, and they said we cannot take Justina out of the hospital. They called DCF,” says Linda Pelletier, Justina’s mother.

They said Justina had “somatoform disorder.”

In short, they were saying she suffered from a mental illness, not mitochondrial disease.

Her parents, Lou and Linda Pelletier, were escorted out of the hospital by security, and within four days, they lost custody of Justina.

In addition to working with Justina, Dean Hokanson also testified at one of the court proceedings.

“They were actually being accused of being too active in pursuing healthcare matters for their child,” says Hokanson.

“It is kidnapping,” says Lou Pelletier.

Boston Children’s Hospital refused to comment about the case, but internal discharge documents obtained by Fox CT provide insight into why the hospital called DCF.

An April report written by a Boston Children’s physician shows that the hospital pulled Justina off many of her prior medications when she was admitted.

It reads:

“Due to concerns regarding Justina’s regressive behavior changes around her family, the multiple medical procedures and care episodes she has been through … and both parents’ resistance towards recommended treatment plans for Justina … a child protection team was convened.”

Before entering Boston Children’s Hospital, Justina was on several medications and had undergone complex surgeries. The Pelletiers say Boston Children’s accused them of “overmedicalizing” their daughter.

But the family showed Fox CT proof that every procedure and prescription was sanctioned by doctors, including Tufts Medical Center specialist Dr. Mark Korson.

Tufts wouldn’t let Korson talk to Fox CT, but the Pelletiers did provide an email that Korson sent to their attorney, referring to Boston Children’s Hospital, their team of doctors and the somatoform diagnosis.

“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch,” writes Dr. Korson.

Dr. Amel Karaa, who works at Mass. General Hospital, says conditions like mitochondrial disorder commonly lead to confusion for health care providers.

“A lot of social cases have been reported where the children were taken away from their parents by social services and the hospital because the medical team thought that the parents were causing this to their child,” says Dr. Karaa.

Back in Connecticut, the Pelletiers spend time reading letters from Justina.

“This one’s in her artwork,” says Justina’s sister, Jennifer, pointing to a folded note.

Nine months after she was admitted to Boston Children’s, Justina is still in the hospital, sneaking messages to her parents, hidden inside origami artwork.

“I know you trust in me. Don’t forget it. I love you more than everything in the whole world. Justina,” Linda Pelletier reads from one note.

The Massachusetts Department of Children and Families allows Justina’s parents just one hour-long visit per week and two twenty minute phone calls.

The Pelletiers are left fighting DCF in court, hoping to regain custody of their daughter, and watch her ice skate once again.

“Hospitals, be it this scenario or big picture, cannot just hide behind DCF to do their dirty work,” says Lou Pelletier.

Since our initial investigation, we’ve learned that the judge has issued a gag order in this case.

The Pelletiers’ next court date is Dec. 5.

Dec. 14 would mark exactly 10 months since they lost custody of Justina.

Source: FOX CT

Addendum: Glenn Beck takes up Justina's cause in two articles.

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Health

‘It’s Kidnapping’: Hospital Takes Custody of Teen Because Her Parents Were ‘Too Active in Pursuing’ Her Care

A 15-year-old is stuck in a Boston hospital after the medical facility took custody of her when her parents argued against her diagnosis.

Justina Pelletier
Justina Pelletier got the flu last year, was admitted into Boston Children’s Hospital, and has been there ever since when her parents lost custody at the recommendation of physicians.
Image source: WTIC-TV

For the last nine months, Justina Pelletier has been sneaking messages to her parents in Connecticut through folded origami notes.

“It is kidnapping,” Lou Pelletier, the girl’s father, told WTIC-TV.

The local news station investigated the case, for which a judge later issued a gag order, and has the background leading up to the ongoing custody battle:

Justina was diagnosed with mitochondrial disease a few years ago. It’s a genetic disorder that can cause loss of muscle coordination and weakness.

Despite that diagnosis she lived a normal life.

But last February, she also got the flu and was admitted to Boston Children’s Hospital to see her specialist.

Almost immediately, a different team of doctors delivered a different diagnosis, questioning the original diagnosis of mitochondrial disease.

“They came in, and they said we cannot take Justina out of the hospital. They called DCF,” says Linda Pelletier, Justina’s mother.

They said Justina had “somatoform disorder.”

In short, they were saying she suffered from a mental illness, not mitochondrial disease.

Her parents, Lou and Linda Pelletier, were escorted out of the hospital by security, and within four days, they lost custody of Justina.

The parents have been fighting the system ever since.

“They were actually being accused of being too active in pursuing health care matters for their child,” West Hartford psychologist Dean Hokanson, who has worked with Justina for five years, told WTIC.

A report by a Boston Children’s Hospital doctor viewed by the local news station cited Justina’s “regressive behavior” and “both parents’ resistance towards recommended treatment plans” as leading to a child protection team getting involved.

The family had argued that the procedures and medications given to their daughter were under the recommendation and guidance of other physicians. One of them was Tufts Medical Center specialist Dr. Mark Korson. WTIC couldn’t speak with Korson, but the Pelletiers provided the local news station with an email sent from the doctor to their attorney.

“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The (Boston Children’s Hospital) team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch,” Korson wrote in the email.

Justina Pelletier
Justina’s parents are allowed to see her once a week and can make two phone calls.
Image source: WTIC-TV

It isn’t the first case this year where a child has been taken from parents after a hospital visit. Police showed up at a California couple’s home and “snatched” their baby after they took their son to another hospital for a second opinion.

The Pelletiers are allowed to visit Justina in person for one hour and make two phone calls each week. The girl still manages to sneak her parents notes.

“I know you trust in me. Don’t forget it. I love you more than everything in the whole world. Justina,” Linda Pelletier read from one of her daughter’s notes.

Justina Pelletier
Justina sends her parents notes with hidden messages in folded paper.
Image source: WTIC-TV

“It’s beyond any wildest nightmare that you could think of,” Lou Pelletier told the local news station of the situation.

Read more about the case, which the Pelletiers will appear in court again for on Dec. 5, in WTIC’s full story.

(H/T: Daily Mail)

Source: The Blaze


Government

Glenn Beck Explodes Over Latest Developments in Case of Boston Hospital Holding Teen Against Parents’ Will

Glenn Beck called the continuing case of Justina Pelletier, a 15-year-old girl whose parents lost custody after bringing her to Boston Children’s Hospital, absolutely “criminal.”

After more than nine months of being kept in the hospital, a judge on Thursday decided to keep the girl where she is, scheduling another court date for Dec. 10 in Boston.

Justina Pelletier
Justina Pelletier, who was diagnosed with mitochondrial disease by one institution, has been held for nine months against her parents’ will at Boston Children’s Hospital, which believes she has somatoform disorder.
Image source: WTIC-TV

It all began after Lou and Linda Pelletier took their daughter to Boston Children’s Hospital after she began exhibiting flu-like symptoms back in February. Several years prior, their daughter had been diagnosed with mitochondrial disease by doctors at Tufts University, but Boston Children’s reportedly disagreed with the diagnosis. They said Justina actually had somatoform disorder, a psychiatric condition, and that her parents were “over-medicalizing” her. When the Pelletiers disagreed and wanted to remove their daughter for a second opinion, they say they were escorted out by security and within four days had lost custody of their daughter to the Massachusetts Department of Children and Families.

The family has been unable to speak out about the situation since November, when a gag order was placed on their case.

“This is absolutely criminal,” Beck said on his radio program Friday in disgust. “I mean, if there was anybody in public office in the Northeast that I trusted, I would get them on the phone. But this is — this is crazy. How can a parent have a gag order and be told not to say anything? That’s their — it’s their child, for the love of Pete.”

Beck said the situation would be different if the parents wanted to “say Jesus at her at the top of the hour and hope that she gets better,” but they were acting on a medical diagnosis they had received from Tufts University. And while details about the situation are limited, it is being reported that while Justina was able to walk when she was admitted to Boston Children’s Hospital, she is now in a wheelchair.

“What this is saying to you, America, is … that child does not belong to you,” Beck asserted. “That child belongs to the state. They’re allowing you to take care of that child unless they disagree, and then the State takes (the child).”

Beck spoke with Cristy Balcells, the executive director of the MitoAction, who said her organization is “mounting an advocacy campaign asking for donations to try to help this family mount an even larger legal response.”

You can read a contribution she wrote for TheBlaze here.

“I think that the national awareness, and pressure from the media is helping,” she told Beck. “The family does feel that they are in a corner and they don’t know what else to do. So we hope that by showing our support nationally, we can make a difference. We are talking now and have reached out to the legislature to try to emphasize how unjust this is and to ask for some transparency.”

She added that the girl’s family “is not after money,” they just want “their little girl to come back home.”

“This child has no parents right now,” Balcells said. “She hasn’t even been put into custody of, like, a family member or an aunt and uncle or someone who could at least be acting like a mom or a dad for her. She has no parent. She lives in a hospital room. Alone.”

Beck asked his audience to get involved at mitoaction.org/advocacy to make sure the family at least has “a really good attorney.”

“Let’s see if we can get this child home for Christmas,” he said. “This is the biggest outrage. Go there and see if you can help out.”

You can listen to audio from Beck’s interview, below (relevant time 1 hour 34 mins. – 1 hour 46 mins.)

Addendum: On December 21 a judge refused to return Justina to her family.

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No release for Conn. teen caught in hospital dispute

At 11:37 a.m., a loud outburst came from inside Courtroom 6. Justina Pelletier’s father then appeared at the door and yelled “Evil!” into the crowded hallway. A few minutes later, her mother emerged, sobbing, “I don’t understand how they can do this. I didn’t do anything wrong.”

Linda and Lou Pelletier of West Hartford, Conn., went into juvenile court in Boston on Friday hoping a judge would return custody of their 15-year-old daughter to them. Justina’s life has been in limbo for more than 10 months, as the teenager has remained in state custody at Boston Children’s Hospital, mostly in a locked psychiatric ward, while her parents, doctors, and lawyers fought over her future.

Instead, Judge Joseph Johnston ruled the state should maintain custody of Justina, at least for now. He did, however, say he would appoint a court investigator to take a fresh look at the case, and he signaled a willingness to explore returning Justina to her home as long as Connecticut authorities closely monitor her care, according to two sources who were briefed on the decision at the closed hearing. The judge, who also continued his gag order on all parties to the case, set the next hearing for Jan. 10.

The family’s saga sprang from a diagnostic dispute between Justina’s doctors at Tufts Medical Center and at Children’s over whether the child’s deteriorating condition was primarily a physical or a psychiatric problem.

The focus of the case swiftly turned to a controversial concept called “medical child abuse,” which is being increasingly applied to parents suspected of interfering with their child’s medical care or pushing for unnecessary and even harmful treatments.

The case shows the profound challenges all the parties face in sorting out the truth behind medical child abuse allegations, and how raw the emotions can get when parents’ right to determine their child’s medical care clashes with the state’s responsibility to protect children from harm.

“They are all in a difficult spot looking at a difficult set of facts, and having to make difficult decisions,” said Dr. Stephen Boos, a child abuse specialist at Baystate Medical Center who is not involved in Justina’s case.

As detailed in a two-part Boston Globe series this week, Justina was rushed to the Children’s emergency room in early February by her mother. Linda had complained that her daughter was suffering severe symptoms from mitochondrial disease, a group of rare genetic disorders that affect how cells produce energy, often causing problems with the gut, brain, muscles, and heart.

Dr. Mark Korson, the chief of metabolism at Tufts, had been treating Justina for that disorder for more than a year and had sent her to Children’s only because her Tufts gastroenterologist had recently moved there. The girl, who six weeks earlier had performed in an ice show, was barely able to walk and had virtually stopped eating.

But within three days, doctors at Children’s disputed that mitochondrial disease was the primary cause of her symptoms and began to suspect that her parents were blocking psychiatric care that she badly needed. The clinicians at Children’s decided that the girl suffered primarily from somatoform disorder, in which symptoms are real but there is no underlying physical cause. The parents complained that the Children’s team was dramatically changing Justina’s course of treatment without Korson’s involvement or even an examination by the gastroenterologist they had come to see.

When the parents threatened to take Justina from Children’s to see Korson, the hospital reported its suspicions of medical child abuse to the state. That prompted the state’s child protection agency to take emergency custody.

Korson asked repeatedly for a roundtable meeting bringing together all of Justina’s key doctors and others who knew her best, as a way to devise a unified plan to present to her parents. This approach is widely advocated by child abuse specialists across the nation in highly contentious cases like this one. However, Korson’s requests went unanswered.

The battle over Justina’s future was one of five cases involving Children’s in the last 18 months where a disputed diagnosis led to parents losing custody or being threatened with that extreme step. These conflicts, which typically involve controversial diagnoses at the medical frontier, have exposed the consequences of the ongoing failure to upgrade medical expertise within the state’s Department of Children and Families. The agency, many observers believe, is simply not equipped to properly referee such cases.

Children’s, Tufts, and the state child-protection agency have declined to comment specifically on Justina’s case, citing patient confidentiality. The Globe, however, obtained records showing that Children’s staff and ultimately state officials believed that the girl was getting a series of needless medications and treatments rather than the mental health care she needed.

Both Children’s and the state noted in records that the parents had a pattern of combative behavior with staff.

It remains unclear why Justina is still at Bader 5, the psychiatric ward at Children’s. The hospital released a statement Friday saying that in general, it “does not keep patients in its care against the direction of the custodial guardian.” The state, Justina’s legal guardian, has apparently struggled since the summer to find a suitable residential center or foster home that would agree to take on Justina’s complex case.

Children’s added in its statement, “We make every effort to treat patients and families involved in these cases with compassion and respect, while focusing on the medical needs of the child involved.”

After Friday’s intense but brief hearing, Linda and Lou Pelletier and two of their four daughters huddled in the lobby of the Edward Brooke Courthouse, wearing expressions that alternated between despair and outrage, before walking out the front entrance. Their lawyer, Chester Tennyson, trailed them, clutching his briefcase and looking grim.

Source: Boston Globe

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