DC - Justina gets standing ovation from Congress

[sweetmom]

Good point about the psychological effect of using a power chair, and also the disconnect between balancing unaided on horseback but needing a power chair to get around.
But then, so little about this case has ever made sense (except to the true believers.)
IMO, a deep dive into the medical records going back to her early childhood would show that the parents made it obvious to her (albeit in a subtle way) that to please them, she needed to be (or at least to pretend to be) disabled -- first with the extreme constipation issues that led to the successive bowel surgeries and then with the problems with walking. And putting that kind of pressure on an emotionally fragile and (according to Lou) developmentally disabled kid is, in my opinion, child abuse.
Let's not forget that Lou eagerly went public with charges that Justina had been physically abused at BCH and the step-down facilities --- beaten, teeth broken -- none of which ever was proven. And he said that she was paralyzed from the waist down and at death's door -- also false. So there is a history of exaggerated or false claims made to garner sympathy. It's not surprising that such a dependent child would co-operate.

 

[annahanna]

Surprise! Yesterday's hearing was rescheduled. The new hearing date is June 17. To be fair, it was a joint motion to reschedule. That Could mean that Dr. Newton's counsel didn't have a problem with rescheduling, had a conflict of scheduling, or they are negotiating a settlement. I think a settlement negotiation is unlikely. Just my opinion though…

 

[sweetmom]

Surprise! Yesterday's hearing was rescheduled. The new hearing date is June 17. To be fair, it was a joint motion to reschedule. That Could mean that Dr. Newton's counsel didn't have a problem with rescheduling, had a conflict of scheduling, or they are negotiating a settlement. I think a settlement negotiation is unlikely. Just my opinion though…

Another delay! IMO, these people would postpone the Second Coming if they thought it would be to their benefit.
And I certainly hope your feeling about a settlement being unlikely is correct. It's time for someone to let the sunshine in, via disclosures in court.

 

[annahanna]

Pictures on Facebook today show Justina in her old red wheelchair, not the power chair. She is out a a concert with her sister so it is possible that her sister did not have a way to transport the much heavier power chair. I did not mention it above, but power chairs are much bulkier and heavier then transport chairs and traditional wheelchairs. (Justina appears to have one of each) They pretty much require either a specially equipped van or a lift on the back of a car or other vehicle to get them from place to place. Otherwise you are either disassembling them or need someone very strong to manhandle the chair. Justina's parents may have a van or a lift, or they may have rented or borrowed the power hair for the bowling outing.

 

[sweetmom]

Pictures on Facebook today show Justina in her old red wheelchair, not the power chair. She is out a a concert with her sister so it is possible that her sister did not have a way to transport the much heavier power chair. I did not mention it above, but power chairs are much bulkier and heavier then transport chairs and traditional wheelchairs. (Justina appears to have one of each) They pretty much require either a specially equipped van or a lift on the back of a car or other vehicle to get them from place to place. Otherwise you are either disassembling them or need someone very strong to manhandle the chair. Justina's parents may have a van or a lift, or they may have rented or borrowed the power hair for the bowling outing.

My guess is that the family used money raised by their Free Justina campaign, which is ongoing even though Justina has been "free" for quite some time, to buy the power chair and possibly a van as well. Not to mention paying off the liens and other debts relating to their foreclosure and bankruptcy proceedings. And given the undying allegiance of their supporters, IMO, none of them complained about the money being used that way.

 

[stormshine]

It might just be me, but in the pictures from the concert it looks like her hair loss is getting much more significant to the point that it can't be covered up by hairstyle anymore. Is it possible she has trichotillomania? Has that been discussed before?

 

[sweetmom]

It might just be me, but in the pictures from the concert it looks like her hair loss is getting much more significant to the point that it can't be covered up by hairstyle anymore. Is it possible she has trichotillomania? Has that been discussed before?

I don't think it has been previously discussed as a cause, but her receding hairline has been noticed. It does seem that certain ways of combing her hair accentuate the "bald" look and others tend to conceal it. Tricholtillomania is a form of OCD and she might have it, but I don't think it is physiologically connected to her other ailments.

Somewhat off-topic: I see from reporting in the Boston Globe that the state rep, Marc Lombardo, who filed the Massachusetts version of Justina's Law almost a year ago (never passed) is one of the most outspoken in the new contretemps over the bathroom rights of transgender people. His side just lost badly in its efforts to defeat a transgender rights bill in the Mass. house.

 

[i.b.nora]

I don't know as much as others when it comes to medical things, so I had to look up info on trichotillomania.

At the one source I looked at, I found the following interesting:

Outlook (Prognosis)
Trichotillomania that begins in younger children (less than 6 years old) may go away without treatment. For most people, the hair pulling ends within 12 months

For others, trichotillomania is a lifelong disorder. However, treatment often improves the hair pulling and the feelings of depression, anxiety, or poor self image.

Possible Complications
People can have complications when they eat the pulled-out hair (trichophagia). This can cause a blockage in the intestines or lead to poor nutrition.

Prevention
Early detection is the best form of prevention because it leads to early treatment. Decreasing stress can help, because stress may increase compulsive behavior.​

From: https://www.nlm.nih.gov/medlineplus/ency/article/001517.htm


As far as the transgender issue goes, I seem to recall Mr Pelletier and the other older daughter attending an anti-transgender bathroom rally in Minnesota sponsored by Michelle Bachmann near the end of her reign. I figured it was a partial payback for her work getting them an appearance in front of the Republican congress people luncheon meeting.

It was a weekend they were gone from the house and Justina was left alone with her mother (and presumably grandmother). A few days later Justina became ill again. My memory might be a little fuzzy ad not completely accurate.

 

[sweetmom]

Very interesting stuff, I.B. Wouldn't it be fascinating if her ongoing bowel problems were related to Trichophagia? Boy, there is a good novel waiting to be written about this case.

I don't recall reading about them attending an anti-trans rally sponsored by Bachmann, but it certainly would not surprise me, given their connections to various far-right politicians and groups. I do recall Lou making a few statements about wanting to run for office locally, which would be quite a task. The town they (and I) live in has been so well-governed by liberal Democrats for so long that a kind of political "mercy rule" had to be instituted for town council elections: 9 people run but only 6 seats can go to be the dominant party. So even though 9 Democrats usually get the most votes, at least 3 Republicans must be given seats on the council. IMO, Lou's brand of conservative and often hysterical rhetoric would not go over well in our town.

And it's worth pointing out that though their case has been much in the news, both in the paper and on TV, there have been no charity fundraisers or walks or events to support them here (with the exception of the party they threw themselves, to which only about 100 of the more than 1,000 invitees showed up). Short version: they have not captured the hearts and minds of fellow townspeople.

 

[i.b.nora]

Wasn't Justina left home alone with her Mother on the weekend of September 20th when her Father and sister Jennifer went to an anti transgender bathroom fundraiser in Minnesota? Just a thought. A week later she was shipped off to Yale hospital for pain?

I am finding the whole thing astoundingly peculiar. Isn't she still being treated by that Doctor at Tufts? Maybe they aren't allowed to cross the border between Connecticut and Massachusetts?

Bumping this post #58 on this thread from November 2014, not that it matters, but my memory isn't too fuzzy.

 

[sweetmom]

And speaking of that doctor at Tufts -- Korson? -- does anyone know if he is still practicing, after Tufts cut ties with him and closed down his mito clinic? I wonder if he will be called to testify if the Pelletier lawsuit v. BCH goes to trial.

 

[annahanna]

It might just be me, but in the pictures from the concert it looks like her hair loss is getting much more significant to the point that it can't be covered up by hairstyle anymore. Is it possible she has trichotillomania? Has that been discussed before?

I noticed the continued hair loss but your post made me look at the pictures again. You are right, the hair loss seems so much more extreme. I feel badly for Justina. For a young woman who seems focused on looks, such extreme hair loss must be very troubling.

As for Dr Korson, I don't think that he is currently actively treating patients. He is listed as the Senior Medial Director for GMCE - Genetic Metobolic Center for Education - a physician resource for mitochondrial disease education located in Salem, MA. Interestingly, Mitoaction, the group he founded, does not list him as a practicing Mito specialist in the US or Canada.

 

[stormshine]

I just wanted to add that I in no way meant to point out the hair loss to be cruel about her appearance. I have dermatillomania, which is very similar, so I can totally understand that it's a very real thing that (if she has trich) she probably has no control over. Being stuck in a wheelchair would probably make it much worse because there's no other outlet.

 

[annahanna]

I just wanted to add that I in no way meant to point out the hair loss to be cruel about her appearance. I have dermatillomania, which is very similar, so I can totally understand that it's a very real thing that (if she has trich) she probably has no control over. Being stuck in a wheelchair would probably make it much worse because there's no other outlet.

I did not take your post that way, and I hope that no one took my response that way either. You expressed legitimate concern about a young woman who is experiencing a series of medical concerns. I am concerned that this particular symptom would be particularly troubling to a young woman who appears to enjoy spa/beauty treatments, manicures, etc. The hairstyle that she shares with her sisters seems to emphasize the appearance of hair loss. I do wonder is a cute bob or other style might minimize the appearance the obviousness of the symptom?

 

[sweetmom]

I did not take your post that way, and I hope that no one took my response that way either. You expressed legitimate concern about a young woman who is experiencing a series of medical concerns. I am concerned that this particular symptom would be particularly troubling to a young woman who appears to enjoy spa/beauty treatments, manicures, etc. The hairstyle that she shares with her sisters seems to emphasize the appearance of hair loss. I do wonder is a cute bob or other style might minimize the appearance the obviousness of the symptom?

A shorter hairstyle would actually weigh less, and that might keep her hair from pulling down and out. And I think she'd really look cute in that kind of style. But if she likes long hair, I am sure she'll keep it.

 

[sweetmom]

An earlier AnnaHanna post said: Surprise! Yesterday's hearing was rescheduled. The new hearing date is June 17. To be fair, it was a joint motion to reschedule. That Could mean that Dr. Newton's counsel didn't have a problem with rescheduling, had a conflict of scheduling, or they are negotiating a settlement. I think a settlement negotiation is unlikely. Just my opinion though…

Does anyone know if that hearing was indeed held today, and what happened if it was?

 

[annahanna]

The hearing was held today. The judge has not yet ruled - it is listed as "under advisement."

ETA: This was a hearing on the motion to dismiss the lawsuit against Dr Alice Newton for failure to state a claim upon which relief can be granted.

 

[annahanna]

I just noticed that the "Miracle: FaceBook page posted a message a few days ago from Justina along with a video of what she said was "me fighting to walk again." The video is actually a chronology of her progress horseback riding. Although they have referred to it as "therapeutic riding", it does not look like what I would expect of equine therapy, hippotherapy, or therapeutic riding. She does not appear to be using any type of specialty assistive equipment; no assistive harness or restraint, no special saddle, and no apparent bracing. The video starts out with 4 adults walking beside the horse - several with hands on Justina's back. Apparently their purpose is to catch her if she falls? She progresses throughout the video to 3 helpers, then 2, and finally no hands on Justina. Although I am a huge proponent of Equine Therapy - properly called Hippotherapy, I don't see the purpose of the crowd of helpers. My son has used Hippotherapy as part of his rehabilitative program and later for strengthening and exercise. He had amazing physical and psychological results with it. It looked nothing like whatever they were doing with Justina. (I also observed a number of children and adults in Hippotherapy while waiting for my son. Their programs may have varied a bit from my son's and each other's - they looked nothing like Justina's.)

I am glad that she is getting out and getting some exercise. I am happy that she is doing something. I think it is great that she is exposed to people outside of her family. I just hope that she is receiving actual physical therapy provided by a licensed physical therapist who is experienced with her particular disability.

 

[sweetmom]

I hope she is, too, but I am betting she is not getting "actual physical therapy provided by a licensed physical therapist who is experienced with her particular disability" : Instead, IMO, she is being used to post pretty and touching photos to keep the family's fans engaged, hopeful and most important, continually willing to send money.

I look forward to hearing the judge's ruling. But I wonder: If the judge ends the suit vs. Alice Newton, will that cause the other lawsuits to fail as well, or was Newton kind of an outlier in the suits vs. BCH?

 

[i.b.nora]

The Miracle site has a new post with a link to a Boston Globe article that doesn't work so, what it says is:

"The KJC Law Firm is pleased to announce another stunning victory and land-mark decision! In the case of Justina Pelletier v. Alice Newton, M.D., et., al. a Suffolk County Superior Court Judge has rejected Dr. Newton's claim that she has immunity from civil prosecution for medical malpractice and civil rights violations as alleged by Justina Pelletier and her parents because she was a mandated reporter of suspected child abuse. Dr. Newton had reported that Justina may have been a victim of abuse in 2013, a claim that was never corroborated.
KJC Law Firm was able to convince the judge that the claims against Dr. Newton are not within the scope of immunity granted by the legislature to mandated reporters. This is a land-mark decision locally and nationally in the fight for parent's and children's rights."​

Maybe someone can locate the actual Boston Globe article reporting on this?