DC - Justina gets standing ovation from Congress

[liljim]

it probably has a lot to do with my personal bias but i always keep thinking this is related to some sort of eating disorder, regardless of whether it started off with a physical root or a psychological one...

it makes me wonder if she is intubated because she cannot eat or she will not eat. do her caretakers believe that she should be able to eat or no?

i have no idea, all my complete speculation.

i do still strongly feel that the best thing the family could do at this point (since there is no longer any custody issue) is to remove this matter from social media entirely.

 

[sweetmom]

it probably has a lot to do with my personal bias but i always keep thinking this is related to some sort of eating disorder, regardless of whether it started off with a physical root or a psychological one...

it makes me wonder if she is intubated because she cannot eat or she will not eat. do her caretakers believe that she should be able to eat or no?

i have no idea, all my complete speculation.

i do still strongly feel that the best thing the family could do at this point (since there is no longer any custody issue) is to remove this matter from social media entirely.

IMO, you are right on the money with your thoughts about an eating disorder, to which I would add an eliminating disorder as well. Excuse the grossness of what I am about to say, but I have long suspected this all began with Justina as a child having painful BMs that led to her refusing to voluntarily try to move her bowels, which if left untreated long enough can lead to a true inability to do it and a condition called megacolon, in which the colon stretches to accommodate the retained movement, then loses motility and the ability to signal that a trip to the bathroom is necessary. You can see how this condition could eventually lead to the need for the cecostomy. If she indeed had a congenital abnormality of tissue constricting the bowel, IMO it could have been the root cause of this horrid condition, which combines physical and psychological problems.

Now I am waiting to see if the Pelletiers, who so far have not mentioned to their rabid supporters that her Christmas release from CHOP was likely because that's what hospitals generally do, as detailed by other Websleuthers, will now make a big deal about her having to return and use that to garner more attention, sympathy and of course, donations.

 

[annahanna]

Snipped

Now I am waiting to see if the Pelletiers, who so far have not mentioned to their rabid supporters that her Christmas release from CHOP was likely because that's what hospitals generally do, as detailed by other Websleuthers, will now make a big deal about her having to return and use that to garner more attention, sympathy and of course, donations.

I find it fascinating that, so far, nobody seemed to have asked WHY Justina was released from the hospital. Nobody seems to ask what her diagnosis is or what CHOP has done differently to suddenly make her well enough to come home. Aside from attributing her recovery to answered prayers, there seems to be no curiosity as to what the real problem was. I find it odd.....

 

[annahanna]

I don't think too many people here are surprised that Justina got home in time for Christmas. Personally, I believe that she was released earlier then the family has indicated - perhaps as early as December 18th. That would explain the reposting of the home address for mail and gifts, the lack of pictures of Justina at the holiday events and celebrity visits that always take place at Children's Hospitals this time of year, and the near silence by the family over the past week. (They also went silent during her 1st release from Yale New Haven and her 2nd release/transfer from Y-NH to CHOP.)


The thing that leaps out at me about the pictures of Justina at home is the nasogastric (NG) feeding tube. An NG tube is a non-surgically placed temporary feeding tube that is used for many different types of patients. (Including those that physically can not eat as well as those that simply refuse to eat.) It is considered short term assistance for someone in need of extra nutrition or very temporarily unable to eat. Frequently used in hospital settings, they can also be placed and removed at home by a trained family member or even the patient herself. In the last picture that was published of Justina while she was a patient at CHOP, she did not have an NG tube in place. It is a bit unusual that she did not need one in the hospital, but it was believed that she needed one to go home. It is also a bit odd that this particular measure would be considered for home use in light of the fact that a previous medical abuse concern was filed partially due to Linda's reluctance to use an NG tube at home. (Tuft's complaint)


Unless the Pelletiers have suddenly learned to respect Justina's medical privacy (doubtful!) they are being uncharacteristically quiet about their experience at CHOP. Their extreme quiet leads me to believe that they are being told things that they do not want to hear about diagnosis, treatment, etc. if that is the case, the next hospitalization is likely to occur at yet another hospital - or perhaps back at Yale New Haven. I sincerely hope that I am wrong and that she is able to recover fully at home, return to school, and start living the life of a normal teenager.

 

[sweetmom]

I don't think too many people here are surprised that Justina got home in time for Christmas. Personally, I believe that she was released earlier then the family has indicated - perhaps as early as December 18th. That would explain the reposting of the home address for mail and gifts, the lack of pictures of Justina at the holiday events and celebrity visits that always take place at Children's Hospitals this time of year, and the near silence by the family over the past week. (They also went silent during her 1st release from Yale New Haven and her 2nd release/transfer from Y-NH to CHOP.)


The thing that leaps out at me about the pictures of Justina at home is the nasogastric (NG) feeding tube. An NG tube is a non-surgically placed temporary feeding tube that is used for many different types of patients. (Including those that physically can not eat as well as those that simply refuse to eat.) It is considered short term assistance for someone in need of extra nutrition or very temporarily unable to eat. Frequently used in hospital settings, they can also be placed and removed at home by a trained family member or even the patient herself. In the last picture that was published of Justina while she was a patient at CHOP, she did not have an NG tube in place. It is a bit unusual that she did not need one in the hospital, but it was believed that she needed one to go home. It is also a bit odd that this particular measure would be considered for home use in light of the fact that a previous medical abuse concern was filed partially due to Linda's reluctance to use an NG tube at home. (Tuft's complaint)


Unless the Pelletiers have suddenly learned to respect Justina's medical privacy (doubtful!) they are being uncharacteristically quiet about their experience at CHOP. Their extreme quiet leads me to believe that they are being told things that they do not want to hear about diagnosis, treatment, etc. if that is the case, the next hospitalization is likely to occur at yet another hospital - or perhaps back at Yale New Haven. I sincerely hope that I am wrong and that she is able to recover fully at home, return to school, and start living the life of a normal teenager.

The Pelletiers are always very selective about the info they release, choosing carefully to make public only those things that seem to confirm their very skewed version of all the medical and legal issues this case has involved.
I hope all those who continue to blindly support them can bring themselves to acknowledge that Justina has always been sicker and less able or willing to eat or move while under the family's care, and became more healthy (the photos confirm this) or able or willing to do them when under (or just after) being in the care of BCH. IMO, that contradicts the narrative the family and supporters prefer, but them's the facts.

One other thing, though: Much as we all wish she could, Justina will never, IMO, live the life of a normal teen, and that is because she never has.
When you take into consideration her various surgeries, hospitalizations, the early stroke, the persistent bowel and eating issues, the so-called paralysis, learning disabilities and on and on, this poor kid has been behind the medical and developmental eight-ball since she was very young. Add to all that her dubious care by a family that has an agenda based on her being ill, and IMO, her prognosis for a normal life is pretty poor. I wish it were not so.

 

[annahanna]

Yes, I hope I am wrong and she can go on to live a normal life, but I don't really think that I am. I have watched kids move on from significant medical issues and extreme medical intervention to normalcy. It is often not the vision of normalcy that they once dreamed of, but a "new normal." The differences between Justina and the kids who do move on to normalcy is an acceptance of their medical condition, a strong desire to overcome their disability, and parents who want them to get better. At this point, both Justina and her family seem to get too much out of Justina being sick and there does not appear to be a desire for her to get better. I am afraid that this saga will continue and there will be another hospitalization in the near future.

 

[sweetmom]

Yes, I hope I am wrong and she can go on to live a normal life, but I don't really think that I am. I have watched kids move on from significant medical issues and extreme medical intervention to normalcy. It is often not the vision of normalcy that they once dreamed of, but a "new normal." The differences between Justina and the kids who do move on to normalcy is an acceptance of their medical condition, a strong desire to overcome their disability, and parents who want them to get better. At this point, both Justina and her family seem to get too much out of Justina being sick and there does not appear to be a desire for her to get better. I am afraid that this saga will continue and there will be another hospitalization in the near future.

If this assessment is correct, and IMO it is, then truly, the family members are sicker than Justina is.

 

[Morag]

if this assessment is correct, and imo it is, then truly, the family members are sicker than justina is.

bingo!

 

[sweetmom]

According to Slate.com, among the 10 Most Important Medical Stories of 2014 is this one:

http://www.slate.com/articles/healt..._surgeon_general_hepatitis_c_obamacare.2.html

"No. 4: Hacktivists hit Harvard.

This summer, Boston Children’s Hospital was targeted in a cyberattack reportedly instigated by the group Anonymous. It had to do with a highly publicized case in which a teenager named Justina Pelletier was taken into custody by child protective services because doctors were afraid she was being abused at home. Anonymous threatened the Harvard-affiliated hospital with retaliation if it didn't take disciplinary action against certain doctors, and the group demanded the immediate return of the child to her parents. The attack started off rather mildly: Hackers posted the personal information of doctors involved in the case. Then, weeks later, the hospital was subjected to attacks affecting its Internet connectivity. The group also employed “spear phishing” emails, attempting to get health care workers to open attachments that provided a way for attackers to get behind the hospital's firewall. The attacks ultimately subsided after members of Anonymous tweeted calls to back off."

I wonder if the Pelletiers will post a link to this?
It was, IMO, one of the worst offshoots of this frustrating case, in that it harmed the hospital and made life more difficult for families of other patients who used a hospital email system set up to keep in touch with their doctors and each other. I do not recall any statements by the Pelletiers urging the hackers to back off. Were there some that I missed?

 

[stormshine]

Does anyone on here keep up with the Diegel case?

 

[sweetmom]

Does anyone on here keep up with the Diegel case?

I was unfamiliar with this case, so I did some Googling. A conservative website called Inquistr had a long, unbalanced story, claiming this case mirrors Justina's, and many many commenters have weighed in with the same kind of hysterical-sounding rants that you see on stories about Justina. One poster, named Susan Lake, has a different point of view and of course, she is being slimed by the other posters. And once again, the photos of the two young sisters in question show healthy-looking kids, although their mother, who has lost custody, claims they are at death's door. Who is right? Who knows? But if you are going to read thru these comments, make sure to read the ones by Susan Lake. There certainly are a lot of parallels to Justina's case here, especially in the reactions of commenters who are quite fired up.

 

[stormshine]

I was unfamiliar with this case, so I did some Googling. A conservative website called Inquistr had a long, unbalanced story, claiming this case mirrors Justina's, and many many commenters have weighed in with the same kind of hysterical-sounding rants that you see on stories about Justina. One poster, named Susan Lake, has a different point of view and of course, she is being slimed by the other posters. And once again, the photos of the two young sisters in question show healthy-looking kids, although their mother, who has lost custody, claims they are at death's door. Who is right? Who knows? But if you are going to read thru these comments, make sure to read the ones by Susan Lake. There certainly are a lot of parallels to Justina's case here, especially in the reactions of commenters who are quite fired up.

The trouble with these cases it that they will almost always one-sided because no one from the hospital or the government can share details about a minor or a person's health. And any information that is shared by the parents (such as court documents or medical records) is always cherry-picked.

I remember the Susan Lake comments. I think she's the one who specifically mentioned meeting the mother before the whole case came about and being suspicious of her kids' medical problems.

After some googling, I also discovered that the mother used to have a site to sell medical products and that she would respond to advice requests on "sick kid" forums with links to her online store.

 

[sweetmom]

The trouble with these cases it that they will almost always one-sided because no one from the hospital or the government can share details about a minor or a person's health. And any information that is shared by the parents (such as court documents or medical records) is always cherry-picked.

I remember the Susan Lake comments. I think she's the one who specifically mentioned meeting the mother before the whole case came about and being suspicious of her kids' medical problems.

After some googling, I also discovered that the mother used to have a site to sell medical products and that she would respond to advice requests on "sick kid" forums with links to her online store.

It's always troubling to read about parents who seek attention or worse, make money, through products or soliciting donations, from their children's illnesses. And it is also troubling to read hundreds of ranting comments from poorly informed and paranoid-sounding posters who seem to need to believe the government is out to get these families. Honestly, I do not know which is more upsetting.

 

[sweetmom]

It's been pretty quiet for the past week. Does anyone have any idea if Justina is still in West Hartford or has gone back to CHIP?
There has been a somewhat related story in the Hartford media: a 17-YO girl who has Hodgkins lymphoma and does not want chemo (even though it would almost certainly halt the disease that will otherwise kill her) petitioned the court to be declared a "mature minor" who could legally demand the treatment be stopped. She too had been put in DCF custody, as her mother seems unable or unwilling to convince her to do the full chemo. The teen is about half-way thru the treatments now. When she's 18, she could legally refuse. There have been a lot of typical "stop DCF now! she has the right to kill herself! what about abortion?" posts and letters, but even more say "she is a drama queen and DCF is doing the right thing." Almost no references to Justina's case, which surprises me.

 

[K_Z]

sweetmom, there is a thread for Cassandra's case(the teen with Hodgkin's lymphoma) here in this forum:

http://www.websleuths.com/forums/sh...o-May-Be-Forced-on-17-Year-Old-Cancer-Patient

 

[sweetmom]

sweetmom, there is a thread for Cassandra's case(the teen with Hodgkin's lymphoma) here in this forum:

http://www.websleuths.com/forums/sh...o-May-Be-Forced-on-17-Year-Old-Cancer-Patient

Thanks for alerting me to the Cassandra thread. There are some very interesting posts there.

 

[1&2&3]

Well it is astonishing to see the same thing continues in poor Justina's life! I followed closely for a long time but backed off with the debacle when Justina was released to the care center from BCH.

My two thoughts on this are that the parents are in denial that their daughter is not a normal perfect child. They refuse to accept any diagnosis that would label her as such.

The second thought is with some diseases, children will progress as a normal child until a certain age. At that time, their disease starts "showing and slowly steals their abilities away".

With negative parents caring for her, could they have slowly broken her will or belief of getting better?

Horrible thought here, could parents be mixing an ingredient into her food or liquid food that isn't detectable? It is in such minuscule amounts it doesn't show up, but thru years of use it has done irreparable harm?

Wow, that is talking out of both sides of my mouth! Bet the truth is in the middle.

 

[sweetmom]

Well it is astonishing to see the same thing continues in poor Justina's life! I followed closely for a long time but backed off with the debacle when Justina was released to the care center from BCH.

My two thoughts on this are that the parents are in denial that their daughter is not a normal perfect child. They refuse to accept any diagnosis that would label her as such.

The second thought is with some diseases, children will progress as a normal child until a certain age. At that time, their disease starts "showing and slowly steals their abilities away".

With negative parents caring for her, could they have slowly broken her will or belief of getting better?

Horrible thought here, could parents be mixing an ingredient into her food or liquid food that isn't detectable? It is in such minuscule amounts it doesn't show up, but thru years of use it has done irreparable harm?

Wow, that is talking out of both sides of my mouth! Bet the truth is in the middle.

I am no fan of the Pelletier family's actions, but I do not think they would go so far as to deliberately physically poison their child.
But I do think you can make the case that they have harmed her emotionally by constantly telling her she is sick, cannot walk, has been assaulted, is dying, etc. etc. If Justina does have emotional or developmental problems, as the family themselves have said when it seemed to support their claims, then hearing such stuff from her beloved parents and sisters could "poison" Justina's understanding of her illness and herself.

 

[CathyinTexas]

I think the Pellitier family is very unique. Very few would have done what they have done. If it were just the parents, maybe suspicion would be justified. All the sisters have expressed at one time or the other that Justina is sick and Boston Children's have made her worse, by not treating her medical but insisting it was psychosomatic or somatoform. They were anguishing over physical and mental suffering during that time and went public pleading for help. As to what her condition is now, we don't really know because they have retreated from public view and sharing her medical details with us. I think it is because they don't want to alienate the medical community more than they have and they are respecting Justina. It is not uncommon for autoimmune or infectious diseases to go unrecognized or misdiagnosed in children and adults and because doctors can't definitively say what the diagnosis and treatment is for their ailments, they are labeled conversion disorder or somtaform. I can imagine how I would feel if it were me. There have been people who had aggressive cancers that were missed for a time and labeled "all in their head". I have an inlaw who has stiff person syndrome and other symptoms, (in England) and she was told this some years ago. Because she had doctors in her family and her own father was a renowned surgeon she was able to get their help in finding doctors who could correctly diagnose her.

 

[sweetmom]

I think the Pellitier family is very unique. Very few would have done what they have done. If it were just the parents, maybe suspicion would be justified. All the sisters have expressed at one time or the other that Justina is sick and Boston Children's have made her worse, by not treating her medical but insisting it was psychosomatic or somatoform. They were anguishing over physical and mental suffering during that time and went public pleading for help. As to what her condition is now, we don't really know because they have retreated from public view and sharing her medical details with us. I think it is because they don't want to alienate the medical community more than they have and they are respecting Justina. It is not uncommon for autoimmune or infectious diseases to go unrecognized or misdiagnosed in children and adults and because doctors can't definitively say what the diagnosis and treatment is for their ailments, they are labeled conversion disorder or somtaform. I can imagine how I would feel if it were me. There have been people who had aggressive cancers that were missed for a time and labeled "all in their head". I have an inlaw who has stiff person syndrome and other symptoms, (in England) and she was told this some years ago. Because she had doctors in her family and her own father was a renowned surgeon she was able to get their help in finding doctors who could correctly diagnose her.

IMO, it is long past time for the Pelletiers to start worrying about alienating the medical establishment...they already have, big-time. And the fact that the sisters echo the parents' belief that BCH harmed Justina is in no way surprising OR proof that is true. Any objective analysis of Justina's health status shows that she was having trouble walking, eating and having bowel movements,swallowing, speaking, and more when she entered BCH. Many of these problems were improved or gone....she could eat, swallow, speak... by the time she left BCH for the rehab facilities. But they returned shortly after she went home to the family's care. In short: Justina had big problems before BCH, some of them improved under BCH care, and now they are back under family/YaleNH/CHOP care. No one has the completely story, but to blame BCH for all Justina's troubles is just ridiculous.