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

[i.b.nora]

That note that Lou released recently, the one he says Justina smuggled out to the family, the one where a portion was cropped out or not included in the image he released. The note that says:

“They hurt me all the time push me all the time and more,” the purported note from Justina Pelletier says. It also says “[they] do not let me sleep ..."
​

I wonder why, when asked by the Blaze people why he didn't include the whole note, his answer was so circumspect and basically changed the subject and did not answer the question.

 

[Minette]

If Justina IS a danger to herself, then it seems to indicate (again, I'm a layperson) that any mental disorder she might have would be something other than somatoform disorder. BPD?? But if that's the case, medication is the usual treatment as I understand it. And again, if it IS somatoform then how is keeping her in a hospital for over a year going to help her understand her symptoms have no physical cause??

I don't really blame CT DCF for not wanting to take on this political hot potato. And I would really like to know why the parents are taking all the heat for Justina going to Boston in a snow storm. What, the Tufts doctors couldn't have said no? The ambulance drivers couldn't have said no? If it was unnecessary and too dangerous to transport a child in those weather conditions it seems like a whe lot of other people besides the parents are to blame.

 

[Linda7NJ]

He's a piece of work.


Sent from my iPhone using Tapatalk

 

[lawstudent]

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.

Fathers who molest their kids are not reunified - if that happens, it's because the allegations were not supported.

Abuse is not just extreme abuse involving poisoning and rape. It used to be, but after a lot of outcry due to children dying from more neglectful situations than actively abusive ones, social services got a lot more involved. That now encompasses failure to get them appropriate medical care in many situations, as judged by doctors. It can be a fine line, obviously.

I don't think Children's believes the Tufts doctor was inappropriate - that's the piece people seem to be missing. If they believed he was subjecting her to insane, unsubstantiated treatments, he'd be in trouble. What exactly was he doing for her? It seems like treatment for mito basically involves vitamins and rest. If in his opinion that seemed to explain the symptoms, and he monitored her for that and gave recommendations on how to stabilize and some meds to address the symptoms, and referred her to other specialists for some of the problems, he was doing his job perfectly fine. It's not a diagnosable condition - it's a matter of judgment, and he may have been making all the right calls.

I do think that when Children's saw her, something was a big red flag, and that's why she has been in psychiatric care so long. Once they started evaluating her mental state, they got more and more concerned and reported it. Maybe they thought the parents were lying to the doctor and exaggerating symptoms, or asking for too much medication. Maybe they thought the doctor's treatment was fine for some of her symptoms, but that the parents had neglected to address serious mental health issues that were posing a danger to her that should have been taken into account. Maybe they had prescriptions from other doctors. Who knows? But the abuse was definitely not thinking she had mito and treating her for it - that is 100% not abuse. We don't know the details, but if it were severely abusive, they wouldn't be trying to reunite her at some point, and they'd be facing charges. It sounds more like non-criminal neglect - like the parents may truly believe she does not have mental health issues and want to treat her only for mito - that's all legal conduct. But if social services thinks she is in danger because the parents are difficult and stuck to their beliefs even when she needs serious help, they will take her away for neglecting to get her the mental help they think she needs. That's the issue here - not their belief or what they've done in the past. It's going forward, will they agree to get her the psychiatric help the authorities have agreed she needs. If they do, they will get her back. If not, they can't let someone unstable out into that environment, even if everything the parents did was legal.

 

[lawstudent]

If Justina IS a danger to herself, then it seems to indicate (again, I'm a layperson) that any mental disorder she might have would be something other than somatoform disorder. BPD?? But if that's the case, medication is the usual treatment as I understand it. And again, if it IS somatoform then how is keeping her in a hospital for over a year going to help her understand her symptoms have no physical cause??

I don't really blame CT DCF for not wanting to take on this political hot potato. And I would really like to know why the parents are taking all the heat for Justina going to Boston in a snow storm. What, the Tufts doctors couldn't have said no? The ambulance drivers couldn't have said no? If it was unnecessary and too dangerous to transport a child in those weather conditions it seems like a whe lot of other people besides the parents are to blame.

Think of it this way: what is the treatment for most mental illnesses, or virtually all of them?

Medication and therapy. For most people, that will provide a reasonable amount of stabilization.

Anxiety, depression, insomnia, schizophrenia, bipolar, PTSD, whatever you can think of - we typically treat that with medication and therapy.

But, think of how many people end up hospitalized or in rehab centers. For people with very severe manifestations, meds and therapy are not enough. For people with severe drug abuse problems, they may need several long stays in rehab. Some people have to be involuntarily held in the hospital as a danger. Some check themselves in because they are suicidally depressed or have been awake for two weeks. Once dangerousness to yourself or others has been established, you can be held pretty much indefinitely in a psych ward, and many people end up there a long time. That usually is due to a suicide attempt or threat, or a psychotic episode, but not always.

Somatoform isn't one illness - it encompasses conversion disorder, hypochondriasis, body dysmorphic, etc. All of those could be treated with meds and therapy, but you can imagine that for some people, the problems become so great that they end up hospitalized long term from the stress and delusions or depression or pain or whatever. That's what happened in this case - to hold a child this long is quite hard to do, and requires a showing of dangerousness that clearly was believed. Whatever corruption can go on in the family law system, for-profit in-demand hospitals like Boston Children's don't generally like to keep kids around who don't need treatment for the fun of it.

 

[lawstudent]

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?
.

Do we know she's going back to Dr. Korson specifically?

But I do not find it weird. Again, they are not mutually exclusive, and treating her for mito was not abusive. It's refusing to treat other issues. They could feel that she should be monitored for mito-related issues in addition to the treatment they are providing. I was having trouble figuring out of Tufts had pediatric psychiatric care - I agree it would make no sense to transfer her to Tufts if she's been in a ward so long and they don't even have one. But Tufts is a big hospital - they may want to just get out of all the craziness and let someone else take responsibility - Tufts can do its own evaluation and come to its own treatment conclusion, and if the parents follow that and she's stable, they will get her back. I doubt they are sending her only to Korson, but to a team at Tufts to look at multiple needs. It's a good hospital, so if that's where she wants to be, I'm sure they work something out. I doubt you will see a total reversal of care and diagnosis, though.

 

[jjenny]

Do we know she's going back to Dr. Korson specifically?

Yes we do.

 

[jjenny]

That note that Lou released recently, the one he says Justina smuggled out to the family, the one where a portion was cropped out or not included in the image he released. The note that says:

“They hurt me all the time push me all the time and more,” the purported note from Justina Pelletier says. It also says “[they] do not let me sleep ..."
​

I wonder why, when asked by the Blaze people why he didn't include the whole note, his answer was so circumspect and basically changed the subject and did not answer the question.

She is smuggling these notes out. He might not want to reveal how she does it, because DCF then will stop it. If the note was fabricated, anything could have been written on it, so what would be the point of not producing the whole (fabricated) note?

 

[jjenny]

If Justina IS a danger to herself, then it seems to indicate (again, I'm a layperson) that any mental disorder she might have would be something other than somatoform disorder. BPD?? But if that's the case, medication is the usual treatment as I understand it. And again, if it IS somatoform then how is keeping her in a hospital for over a year going to help her understand her symptoms have no physical cause??

I don't really blame CT DCF for not wanting to take on this political hot potato. And I would really like to know why the parents are taking all the heat for Justina going to Boston in a snow storm. What, the Tufts doctors couldn't have said no? The ambulance drivers couldn't have said no? If it was unnecessary and too dangerous to transport a child in those weather conditions it seems like a whe lot of other people besides the parents are to blame.

Nobody has even alleged she is a danger to herself. Her supposed diagnosis is somatoform. Not some other mental disorder. Somatoform simply means she is experiencing physical symptoms but she is not malingering. Nothing to suggest she is a danger to herself.
Treatment for somatoform is usually done in outpatient setting.

 

[jjenny]

Think of it this way: what is the treatment for most mental illnesses, or virtually all of them?

Medication and therapy. For most people, that will provide a reasonable amount of stabilization.

Anxiety, depression, insomnia, schizophrenia, bipolar, PTSD, whatever you can think of - we typically treat that with medication and therapy.

But, think of how many people end up hospitalized or in rehab centers. For people with very severe manifestations, meds and therapy are not enough. For people with severe drug abuse problems, they may need several long stays in rehab. Some people have to be involuntarily held in the hospital as a danger. Some check themselves in because they are suicidally depressed or have been awake for two weeks. Once dangerousness to yourself or others has been established, you can be held pretty much indefinitely in a psych ward, and many people end up there a long time. That usually is due to a suicide attempt or threat, or a psychotic episode, but not always.

Somatoform isn't one illness - it encompasses conversion disorder, hypochondriasis, body dysmorphic, etc. All of those could be treated with meds and therapy, but you can imagine that for some people, the problems become so great that they end up hospitalized long term from the stress and delusions or depression or pain or whatever. That's what happened in this case - to hold a child this long is quite hard to do, and requires a showing of dangerousness that clearly was believed. Whatever corruption can go on in the family law system, for-profit in-demand hospitals like Boston Children's don't generally like to keep kids around who don't need treatment for the fun of it.

Showing of dangerousness? That's an absurd claim to make. Considering nobody alleged Justina is a danger to anyone else or to herself.
She is physically ill.
Not dangerous.
DCF appears to have not been able to find a place to put her in, which is why she stayed at Bader 5 for as long as she did.
Now she is at Wayside because that appears to be the only place that would even take her.
Again, absolutely nothing to do with any dangerousness.

 

[MyBelle]

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.

BBM. The child was not taken by ambulance from CT to Boston so that she could consult with her metabolism doc (who was at Tufts.) She went from CT by ambulance directly to the ER at BCH to consult with a gastroenterologist, Dr. Flores, whom CT had referred her to several years previously when he was at Tufts. It was Dr. Flores who referred the Pelletiers to Dr. Korson, not the other way around.

I still find it unbelievable that Connecticut Children's Hospital did not have a physician on its staff capable of handling a patient with difficulty swallowing. The idea that an ambulance was called in to handle an ER to ER transfer to another state hours away sounds like an incredible over-reaction to the situation.

 

[Linda7NJ]

Showing of dangerousness? That's an absurd claim to make. Considering nobody alleged Justina is a danger to anyone else or to herself.
She is physically ill.
Not dangerous.
DCF appears to have not been able to find a place to put her in, which is why she stayed at Bader 5 for as long as she did.
Now she is at Wayside because that appears to be the only place that would even take her.
Again, absolutely nothing to do with any dangerousness.

Her parents are dangerous to her.
She needs protection from them.

What is so difficult to understand?




Sent from my iPhone using Tapatalk

 

[jjenny]

The only thing her parents did is to follow treatments prescribed by reputable doctors.
What's so difficult to understand?

 

[MyBelle]

Fathers who molest their kids are not reunified - if that happens, it's because the allegations were not supported.

Abuse is not just extreme abuse involving poisoning and rape. It used to be, but after a lot of outcry due to children dying from more neglectful situations than actively abusive ones, social services got a lot more involved. That now encompasses failure to get them appropriate medical care in many situations, as judged by doctors. It can be a fine line, obviously.

I don't think Children's believes the Tufts doctor was inappropriate - that's the piece people seem to be missing. If they believed he was subjecting her to insane, unsubstantiated treatments, he'd be in trouble. What exactly was he doing for her? It seems like treatment for mito basically involves vitamins and rest. If in his opinion that seemed to explain the symptoms, and he monitored her for that and gave recommendations on how to stabilize and some meds to address the symptoms, and referred her to other specialists for some of the problems, he was doing his job perfectly fine. It's not a diagnosable condition - it's a matter of judgment, and he may have been making all the right calls.

I do think that when Children's saw her, something was a big red flag, and that's why she has been in psychiatric care so long. Once they started evaluating her mental state, they got more and more concerned and reported it. Maybe they thought the parents were lying to the doctor and exaggerating symptoms, or asking for too much medication. Maybe they thought the doctor's treatment was fine for some of her symptoms, but that the parents had neglected to address serious mental health issues that were posing a danger to her that should have been taken into account. Maybe they had prescriptions from other doctors. Who knows? But the abuse was definitely not thinking she had mito and treating her for it - that is 100% not abuse. We don't know the details, but if it were severely abusive, they wouldn't be trying to reunite her at some point, and they'd be facing charges. It sounds more like non-criminal neglect - like the parents may truly believe she does not have mental health issues and want to treat her only for mito - that's all legal conduct. But if social services thinks she is in danger because the parents are difficult and stuck to their beliefs even when she needs serious help, they will take her away for neglecting to get her the mental help they think she needs. That's the issue here - not their belief or what they've done in the past. It's going forward, will they agree to get her the psychiatric help the authorities have agreed she needs. If they do, they will get her back. If not, they can't let someone unstable out into that environment, even if everything the parents did was legal.

According to the news reports one of the biggest red flag for Boston Childrens was the fact that the MIT diagnosis seemed to be a work in progress yet the mother insisted it was definitive.

 

[jjenny]

According to the news reports one of the biggest red flag for Boston Childrens was the fact that the MIT diagnosis seemed to be a work in progress yet the mother insisted it was definitive.

Clearly, no one could have missed such a big red flag.
Of course child needed to be snatched up by DCF right then and there.

 

[MyBelle]

Her parents are dangerous to her.
She needs protection from them.

What is so difficult to understand?




Sent from my iPhone using Tapatalk

It isn't difficult to understand at all. Is it just me or does there seem to be more of these exploitative, attention-seeking parents oozing out of the woodwork since the advent of social media and moronic reality shows?

 

[Linda7NJ]

Her parents are no danger to her whatsoever.

What's so difficult to understand?

As matter of fact....The judge, child protection in two states, an entire team at Children's hospital, the child's attorney and several doctors including her pediatrician back in Connecticut disagree.

Her parents lie, exaggerate and apparently are more interested in getting media attention.
Lou seems awfully interested in making this his *new* career path. Lou is running around trying to convince people his daughter is at deaths door, he expects her to die any day now...that she's being tortured, used as a lab rat and is now paralyzed.

Her parents also chose to ignore medical advice back in Connecticut that their daughter needed mental health help....just as they are now.

Her parents believe they know more than the doctors they continually dragged her to. Her pediatrician saw it for what it was back in Connecticut and reported it.

There is a much longer trail now to establish a pattern of medical abuse that they now believe plays a significant role in Justina's medical issues.











Sent from my iPhone using Tapatalk

 

[jjenny]

Justina was being seen by a psychologist (long term) prior to being admitted to BCH. So the claim that her parents were ignoring the mental health aspect of her treatment is blatantly false. Why is that so difficult to understand?

"“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."
Read more at http://foxct.com/2013/11/19/hospita...-parents-argue-diagnosis/#JsggFmQfpv5MH8vi.99

 

[jjenny]

Justina's psychologist testified at her court hearing. So he knows what the accusation against the parents was.

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

Read more at http://foxct.com/2013/11/19/hospita...-parents-argue-diagnosis/#jdE4Ltl81bTVCRAx.99

 

[MyBelle]

As matter of fact....The judge, child protection in two states, an entire team at Children's hospital, the child's attorney and several doctors including her pediatrician back in Connecticut disagree.

Her parents lie, exaggerate and apparently are more interested in getting media attention.
Lou seems awfully interested in making this his *new* career path. Lou is running around trying to convince people his daughter is at deaths door, he expects her to die any day now...that she's being tortured, used as a lab rat and is now paralyzed.

Her parents also chose to ignore medical advice back in Connecticut that their daughter needed mental health help....just as they are now.

Her parents believe they know more than the doctors they continually dragged her to. Her pediatrician saw it for what it was back in Connecticut and reported it.

There is a much longer trail now to establish a pattern of medical abuse that they now believe plays a significant role in Justina's medical issues.


Sent from my iPhone using Tapatalk

There certainly is a long trail of esteemed medical institutions and their staff of professionals who all were played by these parental con-artists.