Family battling Children’s Hospital to bring teen home for Christmas

[lawstudent]

Mitochondrial disease can affect multiple organs and have a wide range of symptoms. So there wouldn't be any symptoms left in excess if she has mitochondrial disease. This is a very serious condition that can be fatal.
BCH refused to accept this diagnosis and diagnosed her with somatoform instead.

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934637

I imagine you've looked around this site, but even the foundation devoted to the disease emphasizes how speculative it is. Their point is that virtually any common condition can be caused by cell RNA issues, and I completely agree with that. But it's a catch all term. It's also a diagnosis of exclusion, pretty much. Mitochondrial disease isn't a thing. Neither is somatoform disorder. Both are terms used to refer to a number of symptoms that can be classified into a number of disorders, which are thought to stem from a similar source. Both overlap with other diagnoses and are frequently misdiagnosed or underdiagnosed.

It's not that they are not real disorders, but they are not specific. They both encompass multiple diseases. There is no "mitochondrial disease" - it's a vast spectrum of different diseases caused by RNA abnormality.

The treatments listed are avoid stress and eat healthy and take vitamins. It's not really all that treatable because you are born with a certain cellular structure. It focuses on symptom minimization by maintaining a stable life. Some fatal conditions which have been linked to it may be treatable, but that's not really dependent on the diagnosis of the disorder. The website admits there is no conclusive test and lists "possible symptoms." I mean, it's just not a real helpful diagnosis. Understanding RNA and how it affects other conditions is extremely important and useful research, but it doesn't seem to be of much benefit to the patient. You don't know which symptoms are a result of the disease, which treatments will work, or if you have it for sure. They just treat the symptoms like they would with anyone else. If Children's is wrong, I believe she is in less danger than if Tufts is wrong, just because of the nature of the diseases.

 

[jjenny]

So says the GAL, the placement, and the judge too.

It's detailed in the court order.


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MA DCF claims they are working to return her to CT. Do you believe they are actually doing what they claim they are doing?

“DCF’s primary goal has always been the health and wellbeing of Justina, and finding a solution that would allow her to return to Connecticut. That has not changed in the face of this ruling. The Department is exploring all options that will allow Justina to return to her home state where she has the support of her friends, family, school and community.”
Read more at http://foxct.com/local-news/investi...rtford-girl-for-9-months/#zVS5J7v4GTeQHOT6.99
http://foxct.com/local-news/investigations/stories/hospital-holds-west-hartford-girl-for-9-months/

 

[ontheclock]

This case is so complicated. What a hot mess. This has probably already been discussed, but is there a Guardian Ad Litem in play?

ETA: Just saw Linda7NJ's post. Thanks for the info.

 

[lawstudent]

MA DCF claims they are working to return her to CT. Do you believe they are actually doing what they claim they are doing?

“DCF’s primary goal has always been the health and wellbeing of Justina, and finding a solution that would allow her to return to Connecticut. That has not changed in the face of this ruling. The Department is exploring all options that will allow Justina to return to her home state where she has the support of her friends, family, school and community.”
Read more at http://foxct.com/local-news/investi...rtford-girl-for-9-months/#zVS5J7v4GTeQHOT6.99
http://foxct.com/local-news/investigations/stories/hospital-holds-west-hartford-girl-for-9-months/

I believe them because it's a hassle for them and an expense to the state and I think they'd prefer to have the heat off them.

 

[jjenny]

I believe them because it's a hassle for them and an expense to the state and I think they'd prefer to have the heat off them.

Then why have they not done it? They have been saying they are trying to return her back to CT for months now.

 

[lawstudent]

Then why have they not done it? They have been saying they are trying to return her back to CT for months now.

Because CT and I imagine the judge have to agree...they can't force custody on anyone. Seems like CT does not want to be involved - not sure why. Could be any number of reasons, including the hassle/expense, or some other reason we don't know about.

 

[Linda7NJ]

Then why have they not done it? They have been saying they are trying to return her back to CT for months now.

The parents are not on board.

The child needs her parents to be supportive with the new medical team.

Until her parents can get a grip, she will not be going home with them.

Finding a placement willing to take this on, with her parents being the way they are, is going to be darn near impossible.

Connecticut agrees it's not in the child's best interest to live with her parents.

Her parents are the problem.




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[jjenny]

The parents are not on board.

The child needs her parents to be supportive with the new medical team.

Until her parents can get a grip, she will not be going home with them.

Finding a placement willing to take this on, with her parents being the way they are, is going to be darn near impossible.

Connecticut agrees it's not in the child's best interest to live with her parents.

Her parents are the problem.




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CT agrees? She was in her parents custody in CT, and CT had no problem with that, but now that MA took her, CT agrees?

 

[jjenny]

Because CT and I imagine the judge have to agree...they can't force custody on anyone. Seems like CT does not want to be involved - not sure why. Could be any number of reasons, including the hassle/expense, or some other reason we don't know about.

Judge is the one who claims he wants for her to go back to CT, and urges DCF to send her back to CT. DCF's goal is supposed to be re-unification. If they can not re-unify with parents, they should try to place the child with relatives.
They have not done that either.

 

[Curiosum]

The family has said the reason they went to BCH was because Dr. Korson recommended it to them. He's at Tufts. Boston is several hours from Hartford and there was a snow storm slowing traffic to a crawl. Is a kid having difficulty swallowing and walking really too difficult case for a children's hospital in Hartford?

Maybe it is my slow layman's grasp of all this but to me, the Connecticut Children's Hospital in Hartford should have pediatric specialists on hand without the need to call for a consult at one facility and then ship off a patient to a third facility. Just seems to be beyond excessive, imo.

If that's the accepted way of handling a patient, it certainly explains why our health insurance premiums cost nearly as much as our house payment.

A big piece of this is probably how much these symptoms were viewed as acute vs. subacute vs. chronic. My guess based on what I've read is that a lot of this was probably subacute/chronic but I question if the ED physician had that same perspective. He/she didn't have the luxury of watching this all play out for thirteen plus months and was very reliant on the history provided by JP and her parents which may not have been accurate and may have been embellished for effect. So if you think you have a child with acute dysphagia and weakness then that is emergent and if the parents tell you she has a mitochondrial disease and request that she be transferred to the hospital where her metabolism doctor admits and ask you to call him I think most reasonable ED/peds folks would do that. I wouldn't consider that inappropriate consultation. I would consider that an effort to maintain continuity of care which physicians are encouraged to do. I think this is even more relevant since I don't believe that Connecticut Children's currently have any metabolism sub specialists. So that may be the best justification for transfer to BCH, which does.

All Children's Hospitals are not created equally. I trained at a well regarded, nationally ranked, stand alone Children's Hospital and I guess I kind of took a lot of what we offered, what resources we had, and what we could do for granted. I was in for a bit of a rude awakening coming to a state where our "Children's" Hospital doesn't have the full cadre of sub specialties. If I was facing a medical nightmare with my own child there are some things that I just wouldn't feel I was being a responsible mom if I didn't request they be transferred out of state to a Children's Hospital that had the necessary sub specialist. I wouldn't consider that beyond excessive. I would consider it advocating for my child. I can't criticize another parent for advocating for their child.

Now, having seen all of this play out, I do question if the LP is truly trying to advocate for his child. I do not think he has been an effective advocate but perhaps his own mental health issues interfere there and he really on some level wants the best for JP. On some level I believe that most parents do want the best for their children. Unfortunately, some parents have their own challenges which interfere with making decisions that support their child's best interest. Some other parents struggle to put their children first or struggle with sacrificing some of their wants for their children's needs.

As far as your health insurance premiums, I have no idea what you're paying (our premiums exceed the mortgage on one of our homes but are below the mortgage on another of our homes so I guess it's all relative) but I would suspect that a much larger percentage of your premium dollars being eaten up by administrative costs (including CEO salaries) than by almost anything else. Since you raise the insurance issue I suppose it is also possible that JP's parents didn't want her admitted at Connecticut Children's because they were a non-network provider. That is definitely an issue we're seeing a lot more where I practice.

 

[Linda7NJ]

CT agrees? She was in her parents custody in CT, and CT had no problem with that, but now that MA took her, CT agrees?

CT substantiated the newest abuse allegation. You know that. IMO it's disingenuous to continue to misstate the known facts.
There were Allegations made against the parents in their home state of CT. CT now has ALL the information. There is a documented pattern.

The way this has shaken out. leads me to believe, without any doubt, these parents are guilty of medical abuse.
This child needs to be protected from them, at all costs. Until her parents change their tune....
which I never see happening. IMO




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[jjenny]

How could CT DCF substantiate the new abuse allegation? I am very curious, since child was not in their state at the time. So how do you envision this substantiation to have happened? Did they read whatever MA DCF send them and said "Yay?"
Parents have showed reporters Justina's medical records. They are not hiding any records. What evidence is there that they medically abused her?
She has been in custody of MA DCF for 14 months, and her condition looks to be very poor. Yet her parents are nowhere near to be causing her deteriorated state.

 

[Curiosum]

Judge is the one who claims he wants for her to go back to CT, and urges DCF to send her back to CT. DCF's goal is supposed to be re-unification. If they can not re-unify with parents, they should try to place the child with relatives.
They have not done that either.

MA DCF tried to get CT DCF to supervise/monitor return of JP to her parents around Christmas time. CT DCF went on the record that the allegations were substantiated and that return of JP to her parents was not indicated. In February MA DCF attempted to give CT DCF temporary custody of JP but CT declined jurisdiction. The judge is pushing for CT to step up to the plate and even stated that psychological and clinical evaluations of the parents were ordered but "must be coordinated by CT DCF for this Connecticut family". The judge can keep tossing the ball in the direction of CT but he can't force them to catch it or run with it.

 

[jjenny]

MA DCF tried to get CT DCF to supervise/monitor return of JP to her parents around Christmas time. CT DCF went on the record that the allegations were substantiated and that return of JP to her parents was not indicated. In February MA DCF attempted to give CT DCF temporary custody of JP but CT declined jurisdiction. The judge is pushing for CT to step up to the plate and even stated that psychological and clinical evaluations of the parents were ordered but "must be coordinated by CT DCF for this Connecticut family". The judge can keep tossing the ball in the direction of CT but he can't force them to catch it or run with it.

MA DCF has not tried to return JP to her parents. What they claim to have tried is to return her to a facility in CT. I haven't seen any records of what exactly CT DCF supposedly substantiated, and how they could have possibly done it since the child was not in CT. By the way the judge blamed CT DCF, but CT DCF claims they are doing what they can. So which one am I supposed to believe here?

 

[ontheclock]

I feel like this poor child has been left in a state of limbo. All awhile, everyone else keeps posturing and playing tug-of-war.

 

[jjenny]

Here is CT DCF claiming they are working hard.
“The Connecticut Department of Children and Families will continue our efforts to support the family and arrange for any services recommended by professionals involved with Justina and her family. This matter remains under the jurisdiction of Massachusetts, and we will continue to assist Massachusetts as well as the family.”
Read more at http://foxct.com/local-news/investi...rtford-girl-for-9-months/#Kd5m7hPPMgWLz8q0.99

 

[Minette]

What I don't understand is why--since a couple of posters have mentioned that the alleged abuse is medical abuse, which seems to have consisted of not agreeing that their daughter is mentally ill and doctor shopping, not giving her toxins, etc.--there is no concern with the actual doctors who went along with all this. If the parents weren't dosing her willy nilly with whatever, or somehow strong-arming medical personnel to perform unnecessary surgeries on her, etc then it seems to me that the doctors involved are at least *equally* to blame for any such abuse.

I really, really do not understand the basis of this alleged medical abuse and for me the bottom line is that the child has been held at a facility away from her family (or any family, even a foster one) for a YEAR and she is not appearing to be thriving under this treatment.

So her dad is a jerk. Does he rape her? Beat her? OK, inject her with Drano like one mom I read about since we are talking about alleged medical abuse? Or does he just shoot off his mouth to authority figures? Because, honestly? Here's a dad who at least is out there making an effort to advocate for his daughter even if he rubs a lot of people the wrong way.

So WHY exactly is it so much more dangerous for his daughter to be reunited with him, but 'fathers' who have beaten or molested their kids are regularly reunited with them by child protection agencies across the country? And if she's considered a danger to herself after a YEAR in a psych ward with as we've read only minimal medications, vitamins, etc. then that treatment, or treatment team is. not. working.

But by all means let's get upset about the dad shooting off his mouth in the media while as ontheclock points out Justina is spending her teen years--very publicly, mind you--in limbo a psych ward.

Maybe it's just me, but I think we're getting all esoteric up in this joint.

 

[jjenny]

The so-called medical abuse appears to be not agreeing to follow the treatment for somatoform and wanting to treat her for mitochondrial disease instead.
But now DCF agreed to send her back to Dr. Korson to be treated at Tufts.
So, what DCF is doing makes no sense to me.
If they insist she has somatoform, why send her back to Tufts for treatment? If treating her for mitochondrial disease was abusive, why send her back to Tufts for treatment?
Parents might be difficult people to deal with, but that does not mean they abused their child.
They appear to love the child and the child clearly loves them back. Justina wants to go home to her parents.
I don't thinks she would be in any danger whatsoever if she went home.
In fact I think it's more risky for her to stay at where she is, since Wayside facility is not designed to deal with physically ill children.

 

[lawstudent]

Judge is the one who claims he wants for her to go back to CT, and urges DCF to send her back to CT. DCF's goal is supposed to be re-unification. If they can not re-unify with parents, they should try to place the child with relatives.
They have not done that either.

She has been in the hospital the whole time, right? Because otherwise, I agree, she should be placed with relatives. But it seems like there have been no placements because she's being held in the hospital on a psychiatric hold. That is highly abnormal and done when people present a danger to themselves. Normally a court could also just leave the parents with custody but issue a ruling on medical treatment - because this played out the way it did, I do not believe the main issue in the DCF case is which medical treatment to pursue. I believe that DCF believes her parents are worsening her compromised mental state and as a result can no longer direct her care.

You cannot merely rely on the parents' statements when it is clear the parents are difficult.

You can't rely on DCF/Children's because they can only say some carefully phrased things. You can probably rely the most on the judge, but he obviously only looks at certain things and can only release certain things. And the Tufts doctor is probably reasonably reliable.

Because I read cases a lot, including family law cases, I know how to read between the lines on these things, and it's just common knowledge that you don't spend that much time in a psychiatric ward unless you are a danger to yourself. I don't claim to know what is going on with everything here, and what condition she has, and all that. But it's clear to me that the legal reasoning and justifications going on here imply certain things that people don't seem to understand, and that the complexity of the medical issues is also confusing people. It's a complex case with a lot of things at play.

That is why I believe CT will not get involved. CT politely said it would help out MA while saying MA has jurisdiction, and that means they aren't interested. That was just a PR statement. That's saying "it's not our job." The judge wanted them to take over. MA didn't try to give her to her parents, but MA tried to give her to CT social services to manage the case, which by implication focuses on reunification. CT won't manage it. They agreed with MA apparently and would not give her to her parents right away, but probably feel like they don't have the facilities in the meantime. Boston has the best hospitals maybe in the world. No state wants to take someone out of a Boston hospital and take on such a tough case.

 

[Linda7NJ]

She has been in the hospital the whole time, right? Because otherwise, I agree, she should be placed with relatives. But it seems like there have been no placements because she's being held in the hospital on a psychiatric hold. That is highly abnormal and done when people present a danger to themselves. Normally a court could also just leave the parents with custody but issue a ruling on medical treatment - because this played out the way it did, I do not believe the main issue in the DCF case is which medical treatment to pursue. I believe that DCF believes her parents are worsening her compromised mental state and as a result can no longer direct her care.



You cannot merely rely on the parents' statements when it is clear the parents are difficult.



You can't rely on DCF/Children's because they can only say some carefully phrased things. You can probably rely the most on the judge, but he obviously only looks at certain things and can only release certain things. And the Tufts doctor is probably reasonably reliable.



Because I read cases a lot, including family law cases, I know how to read between the lines on these things, and it's just common knowledge that you don't spend that much time in a psychiatric ward unless you are a danger to yourself. I don't claim to know what is going on with everything here, and what condition she has, and all that. But it's clear to me that the legal reasoning and justifications going on here imply certain things that people don't seem to understand, and that the complexity of the medical issues is also confusing people. It's a complex case with a lot of things at play.



That is why I believe CT will not get involved. CT politely said it would help out MA while saying MA has jurisdiction, and that means they aren't interested. That was just a PR statement. That's saying "it's not our job." The judge wanted them to take over. MA didn't try to give her to her parents, but MA tried to give her to CT social services to manage the case, which by implication focuses on reunification. CT won't manage it. They agreed with MA apparently and would not give her to her parents right away, but probably feel like they don't have the facilities in the meantime. Boston has the best hospitals maybe in the world. No state wants to take someone out of a Boston hospital and take on such a tough case.

Excellent post and I agree with every word.


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