DC - Justina gets standing ovation from Congress

[Hiandmighty]

If they sue, BCH and DCF get to subpoena them and her medical records. I don't think the pelletiers will risk that IMO

 

[Hiandmighty]

CHOP also worked on sarah murnaghan and the lung transplant case, but it's a year and a half later and she is still too sick, apparently, to go back to school.

Places like CHOP can't always work miracles because the parents want them to.

 

[Morag]

Although this has probably been asked and answered before, I wonder what kind of health insurance is covering Justina's hospitalizations and treatments?

 

[sweetmom]

I remain in awe of AnnaHanna's ability to distill this complex case into readable, understandable information for us all.
I found it amazingly insensitive of Lou to say Yale-NH did not have the expertise to care for Justina.
So why did he let her be treated there for more than 2 months, if they were so "non-expert?"
I hope he never tries to get her re-admitted there.
I'd believe their expertise as medical professionals with a mito department over the ranting of an non-medical-professional investment advice salesman (who may or may not actually still have a job in that field. The most recent pitch for contributions said Lou was just too busy these days to, you know, work.)
IMO, if Yale-NH did not find that Justina has mito, then it's almost certain CHOP won't either, as BCH did not. Even Tufts never gave her a definite diagnosis of mito, just a "working" one (and now we see that Tufts lost faith in Korson, who made the working diagnosis.)
This case just gets weirder and weirder.

 

[Hiandmighty]

http://www.dailymail.co.uk/news/article-2865661/Teenager-held-against-hospital-16-months-admitted-specialist-unit-IV-eat.html

 

[sweetmom]

Although this has probably been asked and answered before, I wonder what kind of health insurance is covering Justina's hospitalizations and treatments?

When DCF had custody, all her medical costs in Mass. were covered by the state. Not sure what the story is now....see my posting below about Lou likely not working these days. Last spring, there was a story, I think on a website, that some mysterious billionaire had anonymously stepped in to save the family from debt, but IMO, that was just another Pelletier fairy tale. Because if that guy exists, why are they running pitches for contributions from their deluded followers?

 

[i.b.nora]

"Last week Justina's family took her out of Yale-New Haven and had her admitted to The Children's Hospital of Philadelphia for further testing.

Justina's father, Lou Pelletier, said Sunday that the staff at Yale-New Haven "just didn't have the expertise to deal with" her deteriorating condition.

"They were trying to do the best they could, but there were things beyond their expertise," Pelletier said from Philadelphia.

Pelletier said Justina was still dealing with the damage that was done to her in Boston as a result of her "treatment and lack of treatment.""​

http://www.courant.com/news/connect...hiladelphia-hospital-1208-20141207-story.html

Calling Dr. Munchausen!

 

[Hiandmighty]

Numerous articles discussing a few years back specifically mention Justina's problems in the company of her mother. The gig should be over soon as I assume at some point someone is going to plant a camera to see what is really going on and also more and more hospitals will contradict the supposed Mito diagnosis.

 

[i.b.nora]

Remember: "(Justina was) banned from seeing her family without a welfare supervisor or hospital staff member in the room. She was rarely allowed outside for fresh air and spent most of her time in a small room.
She was finally allowed to go home in June of this year."

This is from the latest Daily Mail article, but there were other reports as well, this is just the first one I could find easily.

Read more: http://www.dailymail.co.uk/news/art...ted-specialist-unit-IV-eat.html#ixzz3LLIEJ1AP

 

[sweetmom]

Numerous articles discussing a few years back specifically mention Justina's problems in the company of her mother. The gig should be over soon as I assume at some point someone is going to plant a camera to see what is really going on and also more and more hospitals will contradict the supposed Mito diagnosis.

Hmmm. Not so sure a camera-plant is feasible, but the fact that major hospitals treated Justina for extended periods and did NOT find that she had Mito speaks for itself.

I do wonder how much time Linda and Lou will spend with Justina in Philly unless they rent an apartment there, as they certainly won't be able to make an 8-hour roundtrip drive daily from West Hartford.

And who will pay the rent for an apartment? Calling the Anonymous Billionaire.....

 

[sweetmom]

Remember: "(Justina was) banned from seeing her family without a welfare supervisor or hospital staff member in the room. She was rarely allowed outside for fresh air and spent most of her time in a small room.
She was finally allowed to go home in June of this year."

This is from the latest Daily Mail article, but there were other reports as well, this is just the first one I could find easily.

Read more: http://www.dailymail.co.uk/news/art...ted-specialist-unit-IV-eat.html#ixzz3LLIEJ1AP

The Daily Mail article was full of mistakes, but that's not surprising. And let's face it, most people who are hospitalized spend most of their time in a small room and are rarely allowed outside. That is pretty much standard procedure.

IMO, the main reason BCH put Justina in the nefarious "locked ward" was to gain control of who could see her and for how long, not because they thought poor "paralyzed" Justina was going to try to escape.

But yes, BCH definitely did limit the parents' access, because they found her condition grew worse after time spent with her mom. Which is just sad.

 

[annahanna]

Numerous articles discussing a few years back specifically mention Justina's problems in the company of her mother. The gig should be over soon as I assume at some point someone is going to plant a camera to see what is really going on and also more and more hospitals will contradict the supposed Mito diagnosis.

It is common for ICUs to routinely monitor patients by video feed. Additionally, many hospitals have at least a small number of rooms with video monitoring capability specifically to deal with suspected abuse. Depending on the state, a warrant may not be required to install or activate the video monitoring of the patient. Some of Lacey Spears abuse of her son Garnett was recorded by hospital surveillance. (Unfortunately too late as the child died.) Kate Parker was also reportedly caught on video medically abusing one of her children. The expectation of privacy is not the same in a hospital as it would be in your own home.

http://www.nytimes.com/2014/02/17/opinion/a-watchful-eye-in-hospitals.html?_r=0

http://www.nursingcenter.com/lnc/journalarticle?Article_ID=437807

 

[i.b.nora]

Snipped

But yes, BCH definitely did limit the parents' access, because they found her condition grew worse after time spent with her mom. Which is just sad.

Precisely my point.

 

[sweetmom]

It is common for ICUs to routinely monitor patients by video feed. Additionally, many hospitals have at least a small number of rooms with video monitoring capability specifically to deal with suspected abuse. Depending on the state, a warrant may not be required to install or activate the video monitoring of the patient. Some of Lacey Spears abuse of her son Garnett was recorded by hospital surveillance. (Unfortunately too late as the child died.) Kate Parker was also reportedly caught on video medically abusing one of her children. The expectation of privacy is not the same in a hospital as it would be in your own home.

http://www.nytimes.com/2014/02/17/opinion/a-watchful-eye-in-hospitals.html?_r=0

http://www.nursingcenter.com/lnc/journalarticle?Article_ID=437807

I did not know that hospitals could legally do this, but it makes sense. I'll bet it is used to determine elder abuse as well.

 

[sweetmom]

Precisely my point.

I totally agree.

 

[annahanna]

Hmmm. Not so sure a camera-plant is feasible, but the fact that major hospitals treated Justina for extended periods and did NOT find that she had Mito speaks for itself.

I do wonder how much time Linda and Lou will spend with Justina in Philly unless they rent an apartment there, as they certainly won't be able to make an 8-hour roundtrip drive daily from West Hartford.

And who will pay the rent for an apartment? Calling the Anonymous Billionaire.....

There should not be a true need to get an apartment in Philly. There is a Ronald McDonald house at CHOP; although I can't imagine the Pelletiers being willing to do what is necessary to stay there for any extended period of time. (Ronald McDonald houses ask for a small nightly donation - usually about $10. They also ask the people who stay there to follow certain house rules which include quiet hours, cleaning up after themselves, and performing a daily house chore.) CHOP also has a small number of rooms available for parental use while their child is hospitalized. They would have to work through a hospital family services social worker to take advantage of these available accommodations. Most children's hospitals do have family services departments to assist families of hospitalized children with day to day needs (laundry machines, discounted meals, quiet rooms, computer/printer/fax availability, etc.) The primary reason some families of long term hospitalized children raise money for hotels, apartments, etc is that you can only deal with the institutional environment for so long without going crazy. That is understandable after months and months of treatment. I don't expect Justina to be hospitalized as long at CHOP as she was at BCH or Yale New Haven. If she is, there is a much larger problem then Mito.

 

[jjenny]

CHOP also worked on sarah murnaghan and the lung transplant case, but it's a year and a half later and she is still too sick, apparently, to go back to school.

Places like CHOP can't always work miracles because the parents want them to.

Murnaghan was going to die without a transplant. So if goal was to prolong her life for some period of time it was a success.
Of course it was not going to be a normal life.

 

[Hiandmighty]

Yes, I agree about murnaghan. In terms of extending her life, it worked.

 

[sweetmom]

There should not be a true need to get an apartment in Philly. There is a Ronald McDonald house at CHOP; although I can't imagine the Pelletiers being willing to do what is necessary to stay there for any extended period of time. (Ronald McDonald houses ask for a small nightly donation - usually about $10. They also ask the people who stay there to follow certain house rules which include quiet hours, cleaning up after themselves, and performing a daily house chore.) CHOP also has a small number of rooms available for parental use while their child is hospitalized. They would have to work through a hospital family services social worker to take advantage of these available accommodations. Most children's hospitals do have family services departments to assist families of hospitalized children with day to day needs (laundry machines, discounted meals, quiet rooms, computer/printer/fax availability, etc.) The primary reason some families of long term hospitalized children raise money for hotels, apartments, etc is that you can only deal with the institutional environment for so long without going crazy. That is understandable after months and months of treatment. I don't expect Justina to be hospitalized as long at CHOP as she was at BCH or Yale New Haven. If she is, there is a much larger problem then Mito.

I can see where quiet hours might be a problem.

I'm still stunned, even after all the outrageous stuff the family has said, by Lou's current remarks about Yale-NH just not having "the expertise" to understand Justina's problems. How smug and condescending! You'd think he was talking about a drop-in Doc In a Box clinic, not one of the country's finest hospitals.
What chutzpah (that's "nerve," for those of you not fluent in Yiddish.)

 

[Ociboys]

Just curious if anyone here is following Isaiah's case. Not a mito patient. He was court ordered in Chicago after his mom demanded he be sent to Philly. She was transporting him from multiple hospitals and posting their excursions/sight seeing as she transferred him to at least 4 hospitals. He does not have a thread that I am aware of but the mom behaved similar to Justina's dad. The case is now sealed under court order so not much info is available.