DC - Justina gets standing ovation from Congress

[sweetmom]

rev mahoney's mention of a transfer to Philadelphia is on his Twitter page:

https://mobile.twitter.com/revmahoney

It was yesterday so scroll down a little. I just now found it.

I did see the mentions of CHOP on his Twitter feed, but do not see a confirmation that she has actually been accepted by that hospital. There are some over-the-top comments implying that it is a done deal, but nothing from the Rev. that definitely confirms it, unless I missed a post that says that.

 

[i.b.nora]

I did see the mentions of CHOP on his Twitter feed, but do not see a confirmation that she has actually been accepted by that hospital. There are some over-the-top comments implying that it is a done deal, but nothing from the Rev. that definitely confirms it, unless I missed a post that says that.

I guess I misunderstood the request. In any case, I myself was looking for where a transfer to Philadelphia was first mentioned. I haven't seen anything yet that confirms it is a done deal. If it does happen, will the Mom move to Philadelphia? I will have to look at a map, maybe its still close enough to West Hartford to commute?

 

[sweetmom]

I guess I misunderstood the request. In any case, I myself was looking for where a transfer to Philadelphia was first mentioned. I haven't seen anything yet that confirms it is a done deal. If it does happen, will the Mom move to Philadelphia? I will have to look at a map, maybe its still close enough to West Hartford to commute?

It's about a 4 hour trip one way, with decent (and it's never decent) traffic, so I'd say commuting is not possible. They'd have to stay over. And they complained mightily about the commute to Boston, which is about half of what it is to Philly. And of course, it is still possible that CHOP is not going to admit Justina. Just because the family implies that it is does not mean that it is really going to happen.
Remember when they said Alan Dershowitz was going to represent the family? Never happened. And what about the lawsuit vs. BCH and the judge, DCF and others in Massachusetts. Never happened. The purported transfer to CHOP may never happen either.

But if it could really help Justina, I hope it does.

 

[jjenny]

Alan Dershowitz offered to help (I heard it with my own two ears) but it didn't work out. Are you implying family somehow lied about it? Because it's not true. And in the end his help was not necessary anyway, as she was released. Purported lawsuits might still be filed, you don't know that they won't file a lawsuit.

 

[Hiandmighty]

What is the statute of limitations for filing a lawsuit?

 

[i.b.nora]

A 'Miracle' comment from about 3 hours ago indicates that they still blame BCH and DCF for Justina's current situation. I don't know if lawsuits might still come.
In answer to a question about the 'freejustina' moniker they say she is free but she is "very damaged" due to the "neglect from bch and ma dcf".

I am in a wait and watch mode.

 

[sweetmom]

Alan Dershowitz offered to help (I heard it with my own two ears) but it didn't work out. Are you implying family somehow lied about it? Because it's not true. And in the end his help was not necessary anyway, as she was released. Purported lawsuits might still be filed, you don't know that they won't file a lawsuit.

I'd like to know why "it didn't work out." IMO, a limelight-loving legal expert like Dershowitz would have been all over this case if he thought there was a shred of chance for a successful lawsuit that would have given him some favorable publicity. What he seems to have said is he'd "like to help", which does not necessarily mean represent the family in court.
But his remarks led to lots of media coverage stating he had joined the Pelletier legal team, which was plainly untrue. And the family did not make any statements acknowledging it was untrue, which IMO is a lie of omission on their part.

He said he wanted to help in April. Justina was not released until July. He had plenty of time to get involved if he wanted to.
As for the family not filing a lawsuit yet (or maybe ever), IMO their failure to do speaks for itself. Many who post on their Miracle website keep asking when the lawsuit will happen. The family has left those posts unanswered. IMO, nothing illegal happened at BCH and they do not have a case.

 

[jjenny]

In the end they didn't end up needing a lawsuit to have her released. I never heard family claiming Alan Dershowitz was a part of their legal team.
As for what is wrong with Justina, there could be many possibilities. There are lots of rare diseases. I wonder if doctors considered something else such as acute porphyria. That could cause both attacks of abdominal pain and psychiatric issues, due to enzyme deficiency.
It could be hard to diagnose sometimes.

 

[sweetmom]

In the end they didn't end up needing a lawsuit to have her released. I never heard family claiming Alan Dershowitz was a part of their legal team.
As for what is wrong with Justina, there could be many possibilities. There are lots of rare diseases. I wonder if doctors considered something else such as acute porphyria. That could cause both attacks of abdominal pain and psychiatric issues, due to enzyme deficiency.
It could be hard to diagnose sometimes.

I am not saying the family directly made the claim. I am saying it was widely reported in various media, mostly in stories supportive of the family's claims of "kidnapping," and the family did not contact these media to correct the misleading or downright false reports about Dershowitz's involvement. That is why so many people assumed he really was actively functioning as their lawyer.

One of the 3 major indications of acute porphyria is red or brown urine. If she had that, surely the various hospitals she was in would have seen it and treated her accordingly.

Putting all the claims about "kidnapping" and "torture" aside, it is very puzzling that none of these excellent hospitals -- Connecticut Children's, Tufts, BCH, Yale New Haven -- seems to have figured out what disease Justina has.

 

[jjenny]

You would think something like acute porphyria could be easy to diagnose but according to the foundation it's not. It's rare and doctors don't always think of it when trying to make a diagnosis.
It fits with at least some of her symptoms. She has, from what I understand, severe pain in the abdomen, muscle weakness, constipation and confusion (at times).

"The Acute Porphyrias:

Four of the porphyrias cause acute neurological symptoms. They are not common and may be difficult to diagnose. It is estimated that about 5 in 100,000 Europeans or people of European ancestry carries a mutation in one of the genes for acute porphyria, although mutations have been found in all races and many other ethnicities."


https://www.rarediseasesnetwork.org/porphyrias/patients/AIP/

 

[sweetmom]

You would think something like acute porphyria could be easy to diagnose but according to the foundation it's not. It's rare and doctors don't always think of it when trying to make a diagnosis.
It fits with at least some of her symptoms. She has, from what I understand, severe pain in the abdomen, muscle weakness, constipation and confusion (at times).

"The Acute Porphyrias:

Four of the porphyrias cause acute neurological symptoms. They are not common and may be difficult to diagnose. It is estimated that about 5 in 100,000 Europeans or people of European ancestry carries a mutation in one of the genes for acute porphyria, although mutations have been found in all races and many other ethnicities."


https://www.rarediseasesnetwork.org/porphyrias/patients/AIP/

I'm pretty sure the dark red urine would be a tip-off to consider porphyria. That is the disease, by the way, that King George of England had around the time of the American Revolution. It made him act in an insane manner and the colonists reacted to that. So in a weird way, porphyria led to the founding of America.

All of us posting on this thread may (and do) disagree about the behavior of the Pelletier family, but I believe we are all united in our hopes that Justina gets correctly diagnosed and effectively treated, ASAP.

 

[i.b.nora]

They just posted to watch Huckabee tonight and tomorrow night. Its over here so maybe I'll catch a rerun if I stay up late enough. Check your local listings.

Edit to add: Another post says they mention Justina at the end of the show. Someone else is going to have to watch it and report on the contents. I am not willing to sacrifice.

 

[forthelost]

BCH sees children with diseases so rare less than a hundred people have been diagnosed with them. So I think they'd know how to spot porphyria. And she doesn't have the symptoms associated with most of them.

 

[jjenny]

BCH sees children with diseases so rare less than a hundred people have been diagnosed with them. So I think they'd know how to spot porphyria. And she doesn't have the symptoms associated with most of them.

I am sorry, but did BCH even try to diagnose her? Seems they quickly decided she has that psychological syndrome and that was it.

 

[forthelost]

She spent six weeks in the neurology ward, despite what her parents claimed about being shuffled off to the psychiatric floor right away.

 

[jjenny]

She spent six weeks in the neurology ward, despite what her parents claimed about being shuffled off to the psychiatric floor right away.

And the outcome of that was what exactly? Other than the supposed psychological condition (the treatment for which didn't work) did they come up with any diagnosis?

 

[sweetmom]

She spent six weeks in the neurology ward, despite what her parents claimed about being shuffled off to the psychiatric floor right away.

Right, and neurology deals with physical ailments. I am sure they tested her for various conditions to make sure the diagnosis of somatoform disorder was valid.
Another thing the parents claimed, and this was in many media reports, was that a doctor in the ER told them: "We don't believe in mitochondrial disease here."
That's SO bogus: BCH has a whole department devoted to mito disease. IMO, no doctor at BCH ever said any such thing to them.
It's quotes like that from the parents that make me doubt anything and everything they say.

 

[jjenny]

Diagnosis for somatoform was valid?
I have seen no evidence of that whatsoever. Hopefully doctors at Philadelphia get to the bottom of what she actually has.

 

[sweetmom]

And the outcome of that was what exactly? Other than the supposed psychological condition (the treatment for which didn't work) did they come up with any diagnosis?

The treatment didn't work? Psychological therapy can be a multi-year process.
IMO she was healthier during and immediately following her stay in the psych ward than she was when she was admitted to BCH and than she is now, after being back in her parents' care.

Immediately after BCH, she was well enough not to need hospitalization, to be in the step-down facilities, to go out to see shows and Red Sox games, to eat again without swallowing issues, etc.

And never forget that BCH wanted to release her many months earlier, but the family would not agree to the placement in a non-medical facility, even though it meant she would soon go home. That is why she was in Massachusetts for a year, NOT because the hospital wouldn't release her.

Let me repeat this in simple terms:
Under her parents' care she got so sick she needed to be hospitalized for months.
Under BCH care, she improved in measurable ways, and was able to live in a non-medical facility.
Back under her parents' care, she got sick again in about 2 months and has been hospitalized for about 2 more months with no end in sight.
IMO, there is a pattern here and it does not make the family look so good.

 

[jjenny]

I don't see anybody else claiming improvements other than on this board.
She was released in the wheelchair with hair loss (which seems to have gotten worse).
If she has some undiagnosed condition for which she isn't being treated properly, why would anybody be surprised she hasn't shown improvement after being released? How is that her family's fault?
She needs to get a correct diagnosis first.