Family battling Childrens Hospital to bring teen home for Christmas
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Gardenlady
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That was also my impression. Also, many drugs, including several antidepressants, have hair loss as a side affect.
Even assuming she just pulled it out on her own-clearly she wasn't doing it before. Her recent looks are quite shocking to say the least.
Donjeta
Adji Desir, missing from Florida
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I did some research on mitochondrial disease a while ago and I saw some articles that say a receding hairline may be a symptom of mito as well
http://www.cnp.org.eg/html/004.pdf
I wonder what treatments the Tufts doctors had her on as it seemed to me that there really wasn't that much that has been proven effective in mito Mainly some vitamins and minerals and other stuff that might or might not work.
http://www.cnp.org.eg/html/004.pdf
I wonder what treatments the Tufts doctors had her on as it seemed to me that there really wasn't that much that has been proven effective in mito Mainly some vitamins and minerals and other stuff that might or might not work.
She was on a bunch of vitamins and some other meds from what her father said.
You will have to ask Children's that. From what father says, after she was "diagnosed" with somatoform disorder, Children's wanted to stop all her vitamins and minerals she was taking for mitochondrial disease.
CathyinTexas
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The best way to learn about this case is to watch the many interviews of Lou Pelletier where he explains in detail Justina's medical issues. It is hard to analyze this or have an opinion when the facts aren't known. Some news article have printed falsehoods or omitted important information. Mito effects different organs and parts of the bodies differently in individuals who have it. In Justina's case it is her gastro and heart. She was on several medications, including a vitamin cocktail. Children's stopped all medication and her vitamins. I assume to start from baseline with their behavior modification. The psychologist on the Child Protection team at Children's at the time was working with grant money from National Institute's of Health for children who have inflammatory bowel disease to use cognitive behavior techniques. As Lou said, if it looks like a duck, and quacks like a duck, it is a duck, and I agree with him.
She was also on medication for rapid heart rate. Apparently that was stopped as well. How would Children's justify that? Heart rate is something that can be objectively measured.
What has Children's been treating her with? Mental meds?
It certainly looks that whatever Children's has been treating her for didn't do her any good.
She doesn't appear to be in good shape by any means.
I find the whole case completely outrageous and can't understand how they can get away with it all.
Linda7NJ
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Based on the information we have, I would agree.
The important part of that sentence I respectfully sniped, understanding isn't one of the options. They did and are. That's the jumping off point this family needs to recognize. IMO
forthelost
I hear the angels call my name and I am Winterborn
BCH was suspicious of the diagnosis because her metabolic workup was normal (very unusual if she really has a mito condition) and she's never had a muscle biopsy, the standard means of diagnosing mito. She also appeared to worsen in the presence of her mother. (For the record, somatoform conditions aren't like a factitious disorder; the person is not making up their symptoms but they are no caused by a purely physical condition either.) The fact her parents threatened to sue any place that took her and wanted to call the FBI doesn't look very good for them.
Once again, these blog posts are very good summaries of the situation: http://www.harpocratesspeaks.com/2014/03/the-case-of-justina-pelletier-calls-for.html
http://www.harpocratesspeaks.com/2014/03/justina-pelletier-to-remain-in.html
Once again, these blog posts are very good summaries of the situation: http://www.harpocratesspeaks.com/2014/03/the-case-of-justina-pelletier-calls-for.html
http://www.harpocratesspeaks.com/2014/03/justina-pelletier-to-remain-in.html
forthelost
I hear the angels call my name and I am Winterborn
This is the judge's order: http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf
It says "Based on credible psychiatric and medical evidence this court has found that Justina suffers from a severe and persistant somatic symptom disorder."
The judge got to see all the medical records we haven't, so I find him credible in this case.
It says "Based on credible psychiatric and medical evidence this court has found that Justina suffers from a severe and persistant somatic symptom disorder."
The judge got to see all the medical records we haven't, so I find him credible in this case.
The so called credible evidence is the testimony of Children's doctor.
There is no objective testing that can prove she has this supposed somatoform disorder. Furthermore after all the treatment for the supposed somatoform disorder she appears to be worse and not better. So I don't find this credible at the least. And since Children's can cure her from whatever they think she has, I find their objection to her taking her vitamins to be laughable.
So why didn't Children's do a muscle biopsy? Considering there is no test for this "somatoform" disorder there is no evidence she has that either. As for appearing worse in the presence of her mother- now she is not in the presence of her mother, yet she is in wheelchair with receding hairline and red lines on her stomach. She looks horrible. So for Children's to claim she appears to be worse in the presence of her mother sounds like a joke to me. As for blog posts, that is not acceptable evidence on this website. And if we are going to use blog posts as evidence, I can posts links to the ones that say otherwise.
forthelost
I hear the angels call my name and I am Winterborn
I posted them because they give several links to the stories that have been in the mainstream media.
She was apparently on Tegretol for neurological problems, Metoprolol for a rapid heart rate, and Midodrine for boosting blood pressure. All drugs with potentially serious side effects. Not stuff you give someone for no reason.
Why do you think the judge only saw the Children's records?
The parents even used their visitations with their daughter as time to scream and curse at DCF. They apparently won't give an inch to anyone else.
She was apparently on Tegretol for neurological problems, Metoprolol for a rapid heart rate, and Midodrine for boosting blood pressure. All drugs with potentially serious side effects. Not stuff you give someone for no reason.
Why do you think the judge only saw the Children's records?
The parents even used their visitations with their daughter as time to scream and curse at DCF. They apparently won't give an inch to anyone else.
So Children's took her off and what happened? Is she any better? Is she running around? And after they took her off, what did they put her on? Is she on any mental meds? Mental meds have a bunch of side effects all on their own.
What other records would have judge seen? Nobody else but Children's diagnosed her with somatoform as far as I can tell.
Again, there is no test that can prove she has somatoform.
They have obviously been treating her for it, but where is any improvement?
If they clam it's all in her head, why didn't she get any better? You would think that if it's all were in her head, she should have gotten better with proper treatment.
The proof is in the pudding. So far all I see is a very sick child that can't even walk after being treated for a condition that is "all in her head." For which there is no objective testing.
forthelost
I hear the angels call my name and I am Winterborn
I haven't seen the records the judge did and can't definitvely say the somataform diagnosis is correct. I can't say whether she is better or worse. I can say that most mental conditions are chronic and aren't easily taken away. Schizophrenia and depression are all in the head, but if someone spends years in treatment for one or the other, it doesn't mean they aren't really sick.
The Globe reported that when she was admitted: "They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasnt eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.
But now Justinas speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death." So it doesn't sound like whatever she was being treated for then was working, either.
The Globe reported that when she was admitted: "They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasnt eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.
But now Justinas speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death." So it doesn't sound like whatever she was being treated for then was working, either.
When she was admitted to Children's she was sick with a flu. It made her weak. Prior to getting the flu she was doing well. She was not in a wheelchair while living at home. Now she is in wheelchair apparently not even able to walk.
Taking a child from her family because they were treating her for one diagnosis, and then un-successfully treating her for another (for which there is no test) is outrageous in my view.
Also parents say she isn't even being educated. When she was with her family she was going to school.
What is the justification for not providing her with an education?
Taking a child from her family because they were treating her for one diagnosis, and then un-successfully treating her for another (for which there is no test) is outrageous in my view.
Also parents say she isn't even being educated. When she was with her family she was going to school.
What is the justification for not providing her with an education?
The goal of DCF IS to protect the child and that includes from their parents if need be. CT DCF determined the parents are not fit to care for their child. "Parents being obnoxious" is a behavior than can affect the well-being of a child in their care, especially an ill child.
DCF didn't make the medical diagnosis but they did make a determination that the child's parents can't care for her medical needs whatever they may be. The parents had a chance to get the child closer to home and the father blew it. Now, it's everybody else's fault? Nope.
There are truly abusive people DCF could be protecting the children from.
And many times they don't.
But this one sick child they got their paws on.
Who I don't believe was being abused by her parents at all.
What is being done to this poor child now? Why isn't the child in school? How is the well being of the child affected by being away from her family? She sure doesn't appear to be thriving.
Is DCF not expecting the child will ever get out so she doesn't need the education?
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