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

Status
Not open for further replies.
  • #81
i would really like to hear more about why children's was so sure about there position, to move so quickly to discontinue her current treatment when she arrived, to discount her current medical team, and the fast move to claiming medical abuse.

i guess we will only hear about the vast majority of the details if there is a trial.

most of all i just hope this girl can get healthy,.
 
  • #82
What the heck is going on with Justina's nutrition if her hair is falling out and gums are receding, plus confined to a wheelchair. That is abuse right there if it's true and the residential center is allowing it to get worse. Does she still have a feeding tube? People can supposedly live with those so something is not right. Are her bowels now working without regular fllushing? Why don't they have to prove that Justina's legs and muscles work and prove that it's somatic, or call in her old doctor and come to some compromise!
 
  • #83
She has been in the state's custody for a year now and her condition isn't improving. So clearly the original condition was not the result of abuse. So why is the state still denying the parents to have access? The answer is, I am afraid, a common one. Once child services or other similar agency gets involved like this, it is almost impossible to get them out. The system just goes on "auto-pilot" and always assumes the worst. Court's impose gag orders so no one can talk about anything, which only makes the situation worse. Its very sad.
 
  • #84
I think that Justina's dad has broken the gag order by going to the press and revealing Justina's condition because her condition has deteriorated to such an extent.
'But Lou Pelletier broke his silence recently, telling ABCNews.com, "I have got to save my daughter's life."'
http://abcnews.go.com/Health/advoca...-pelletier-held-state-pysch/story?id=22312907

Since the court meets tomorrow, supposedly to render a decision, it will be interesting to see whether Mr. Pelletier is reprimanded or fined.
It will be even more interesting to see whether or not the judge is able to break the lockstep relationship between the court system, BCH, and MDCF.
 
  • #85
I find this whole situation just bizarre. Why is the hospital allowed to keep the child? Her condition apparently has not improved at all, so why does this hospital think they got the correct diagnosis?
 
  • #86
I think that Justina's dad has broken the gag order by going to the press and revealing Justina's condition because her condition has deteriorated to such an extent.
'But Lou Pelletier broke his silence recently, telling ABCNews.com, "I have got to save my daughter's life."'
http://abcnews.go.com/Health/advoca...-pelletier-held-state-pysch/story?id=22312907

Since the court meets tomorrow, supposedly to render a decision, it will be interesting to see whether Mr. Pelletier is reprimanded or fined.
It will be even more interesting to see whether or not the judge is able to break the lockstep relationship between the court system, BCH, and MDCF.

hearing was cancelled, im not sure exactly when but it seems it could have been weather related. all i saw was they are trying to reschedule for some time this month.
 
  • #87
  • #88
  • #89
I find this whole situation just bizarre. Why is the hospital allowed to keep the child? Her condition apparently has not improved at all, so why does this hospital think they got the correct diagnosis?


It's a crazy story for sure!

I keep reminding myself we are only hearing one side....
If it's true she's no better and has actually suffered due to this Psychological diagnoses approach.,, it should be a no brainer. IMO


Sent from my iPhone using Tapatalk
 
  • #90
They'll probably claim she has IBS, an eating disorder, and somatoform disorder.
 
  • #91
i would really like to hear more about why children's was so sure about there position, to move so quickly to discontinue her current treatment when she arrived, to discount her current medical team, and the fast move to claiming medical abuse.

i guess we will only hear about the vast majority of the details if there is a trial.

most of all i just hope this girl can get healthy,.

This is an article by a lawyer who has had clients in a similar situation to that being suffered by Justina and her family. It includes information about the state of DCF, and the Child Protection Team at BCH, including common assumptions, the length of time for cases to proceed, and effect on families.

http://jmilaw.net/blog/?p=86
 
  • #92
  • #93
What the heck is going on with Justina's nutrition if her hair is falling out and gums are receding, plus confined to a wheelchair. That is abuse right there if it's true and the residential center is allowing it to get worse. Does she still have a feeding tube? People can supposedly live with those so something is not right. Are her bowels now working without regular fllushing? Why don't they have to prove that Justina's legs and muscles work and prove that it's somatic, or call in her old doctor and come to some compromise!

It's possible that Justina has been given medication by BCH Bader 5 staff as part of her "treatment", and that hair loss is a side effect of those drugs. There is a study, Hair loss in psychopharmacology, (http://www.ncbi.nlm.nih.gov/pubmed/10798824), which says that such medication-induced alopecia is a possible side effect of many psychopharmaceuticals. Another study, Thinning Hair or Hair Loss as a Bipolar Medication Side Effect (http://bipolar.about.com/od/sideeffectslibrary/a/hairloss.htm), explains that medications containing Lithium can cause thyroid problems associated with losing hair.

Regarding receding gums, some medications cause dry mouth which leads to problems with gums. In the article, Pscychotropic-induced dry mouth: Don't overlook this potentially serious side effect (http://www.currentpsychiatry.com/index.php?id=22661&tx_ttnews[tt_news]=176472), the authors mention that dry mouth is a reported side effect of more than 1,800 drugs from more than 80 classes.

There is also the possibility that poor appetite -- another side effect of psychopharmaceuticals--could lead to problem from a lack of proper nutrients. Or poor appetite could simply be a result of suffering days long headaches or nausea that are also side effects of those medications.

Some people may be likely to suffer from a deficiency of Vitamin D. Among them are those who suffer from gastrointestinal diseases and those who receive little or no exposure to direct sunlight. Vitamin D is essential to promote healthy bones, no matter how old a person may be. In his petition to the court, Justina's attorney mentioned that she had not received direct sunlight since entering Bader 5.

This is backed up by other sources, for example on WebMD, Dr. Amy McMichael, a professor of dermatology, lists stressors that can change the physiological balance within a person's body which could lead to hair loss. These include a strict low-calorie diet or significant weight loss, certain medications, and nutritional deficiencies like Vitamin D, lack of sleep. In addition, Paradi Mirmirani, MD, another dermatologist, points out that the cause of hair loss happened "three, six, or even nine months before the hair loss began." (http://www.webmd.com/beauty/hair-health-11/hair-stress-effect?page=2) This source also mentions that "hair loss can be an early sign of about 30 different diseases."

Given the situation in which BCH has placed Justina, IMO, the only surprise is that these symptoms have not been remarked upon previously.
 
  • #94
obviously everything i say is my opinion, im not directing anything im saying at anyone in particular (am i really going to have to say this in every single post i make?)

so, admittedly this case looks terrible, and strange...

but im not going to believe that BCH has gone off the rails and is making reckless decisions that are having a massive negative impact on patients without great proof of such.

there is a lot that needs to be looked into here no doubt, i wish both sides could be more open about the exact details.

i see the NG tube in some of the pictures, i have a lot of experience with eating disorders, if that is something that is involved here then that could explain many of the conditions she is suffering from (not referring to the primary diagnosis here of mito/no mito etc but the secondary ailments she is now suffering from, hair, gums, strength, cognitive)

just like everyone else i would still love to hear more on why the prior doctors and diagnosis seem to have been so shut out. although i will guarantee you that BCH considered all of that greatly behind closed doors.

the lawyers letters linked are full of typical hyperbole, bordering on unprofessionalism. ask anyone that is knowledgeable on the subject if they think the immediate closure of the Bader 5 unit is something that would be good for anyone... there are a lot of great and absolutely necessary emergency services being provided there every day, all year.

this has gone on for so long that it would take great proof for me to believe this is just the misguided or stubborn mission of some small faction at BCH. its possible, and im glad it is being looked into, but to me it is incredulous.

the whole mission of Bader 5 is to move children out as quick as is safely possible, to move them on to more specific and tailored plans and programs for recovery etc

they have no need to try to keep people there, those beds are going to be full no matter what.

and the legal troubles they open themselves up to are immense - i promise you there was a contingent of administrators at BCH that once they had all the details of this case were persistently encouraging the team to "get that patient out of this hospital as soon as is safely possible"...
 
  • #95
oh regarding eating disorders that get to where an NG tube is required - a healthy looking teen girl can look like she is at death's door in under a month in this situation and begin to suffer many physical ailments, nevermind if the situation goes on for many months.

i have seen it many times, it is frightening. it is even more frightening when the person is refusing to eat because their illness is telling them it is the way to "beauty". (not claiming that is the case here)
 
  • #96
BCH is one of the best children's hospitals in the world. Children from literally all over the globe are brought there for treatment. Obivously because of privacy laws, they can't state what made them come to this conclusion. As a result of all that I'll take what the family is saying with a grain of salt. Maybe they're exactly right, but there's a lot of cases where whay the family says isn't exactly true.
 
  • #97
Justina"s Dad is going to be on Glenn Beck in few minutes.
 
  • #98
Justina"s Dad is going to be on Glenn Beck in few minutes.

wow he was just on there once in the last few days too, where do you watch that tv or online?
 
  • #99
  • #100
thanx for the heads up trigger, just caught it. (and yeah it was a new interview, check out the video at the link i gave above for another talk they had from yesterday)

regarding what they talked about - you can waive your HIPAA rights, but maybe you cant waive them for a minor. and then there is the court case gag order which probably wouldnt allow for it anyway.

*edit - found this, the court related parts should apply here - http://www.hhs.gov/hipaafaq/personal/227.html

man i would love to get a generic interview out of children's hospital about the issues related to this case but im sure they wouldnt do it (even talking in generalities about policy etc).
 
Status
Not open for further replies.

Members online

Online statistics

Members online
134
Guests online
2,374
Total visitors
2,508

Forum statistics

Threads
633,168
Messages
18,636,792
Members
243,429
Latest member
LJPrett
Back
Top