Family battling Children’s Hospital to bring teen home for Christmas #2

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It is not uncommon for feet to swell when you're in a wheelchair, even if your heart and kidneys are fine, because the venous return is compromised due to the inactivity of the muscle pump.
 
Don't they give beta blockers for anxiety related heart palpitations? I just can not believe that Justina's heart and kidney function is not being regularly checked. She has probably reported many symptoms and her parents raise heck, so they know what the complaints are.
 
Do people really think that the Framingham facility wouldn't have been monitoring her health? They regularly deal with people with all kinds of problems and needs - and with the circus following this poor girl around you can bet that if there was a problem with they would have mentioned it to her physicians.



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Linda7NJ said:
Over on the FB page, Justina did go on an outing with her family and extended family ...for a birthday party & even got a pedicure!
It's a miracle! Her feet & legs weren't blue and swollen!!! I'm also very happy to say she looks far far far removed from near death!!!!


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What I saw was a young woman who was ecstatic with joy and love for her family. In a close up of her and her sister her eyes tell it all. She looked ill in my opinion. She doesn't look in radiant health. She did look very happy. This family has shown such strength and stamina throughout all of this. It is obvious they are very close.
 
Donjeta said:
It is not uncommon for feet to swell when you're in a wheelchair, even if your heart and kidneys are fine, because the venous return is compromised due to the inactivity of the muscle pump.
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Was this girl in a wheelchair prior to becoming a ward of the state?

txsvicki said:
Don't they give beta blockers for anxiety related heart palpitations? I just can not believe that Justina's heart and kidney function is not being regularly checked. She has probably reported many symptoms and her parents raise heck, so they know what the complaints are.
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Yea, they do. Along with 10 or so other medical conditions. Oh, I can absolutely believe her cardiac and renal function may not be tested on a regular basis.

I hope you're right.

Gardenlady said:
Do people really think that the Framingham facility wouldn't have been monitoring her health? They regularly deal with people with all kinds of problems and needs - and with the circus following this poor girl around you can bet that if there was a problem with they would have mentioned it to her physicians.



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I hope you're correct, however, I'd never blindly trust the medical community to do the correct thing.

Just saying.

Gardenlady said:
The only disdain I see is for the obvious and gross exaggerations and histrionics employed by her father and the various political groups that have attached themselves to this poor girl's situation. Exaggerations like "torture", "near death", "dying", "medical experimentation", "fascists", "nazis", etc.
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Hmmm...the disdain I see is from that particular medical facility toward a young woman and her family.

<modsnip>
Another year and Justina will be 21. :)
 
CathyinTexas said:
Is there a reason that you have such disdain for a girl who has been isolated for so long from her family, friends and school?
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Distain for a child??? Have you even read my posts? I have nothing but sympathy for Justina. I had hoped her parents would have set aside their own needs for attention long enough to put her needs first.
Had they done that, Justina would have been HOME long long ago...

I have wanted nothing more than this child protected and her family to work their reunification plan.



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She was not walking when she was brought to Children's.

I think you need to check her age again.

Edit - was directed to post above Linda's.
 
screecher said:
Was this girl in a wheelchair prior to becoming a ward of the state?



Yea, they do. Along with 10 or so other medical conditions. Oh, I can absolutely believe her cardiac and renal function may not be tested on a regular basis.

I hope you're right.



I hope you're correct, however, I'd never blindly trust the medical community to do the correct thing.

Just saying.



Hmmm...the disdain I see is from that particular medical facility toward a young woman and her family.

<modsnip>
Another year and Justina will be 21. :)
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Justina is not 20.

I'm wondering how you know a facility "feels" disdain for a patient and her family. Do you work there?

The facility did not volunteer to take her on as patient. That's now how the procedure works. The medical team, or physician, physicians, whomever - identifies facilities that can meet the medical, psychological, and rehabilitative needs of the patient. Then out of those, they find ones with available beds. So long as the patients family does not threaten the facility, the transfer can then be made. (I am simplifying obviously - the point is that facilities do not volunteer to take on patients, they don't bid on patients, or any other odd implication that the facility somehow inserted itself into the process so that they too could get their hands on this patient and inflict torture, disdain, or whatever else it is Lou is saying they're doing today).

The putting forth of the idea that a facility feels disdain for a particular patient is part of the histrionics and exaggeration going on in this case.
 
Please tone down the snark and personalized posts. Those type of posts make it uncomfortable to come in here to read and they are unnecessary. Please discuss in a civil manner. If you come across an offensive post click the alert triangle and do not respond.
 
If, and a big IF, Justina only has somatoform disorder then I'm not so sure she'd be better off at home. She thinks she has a pretty bad disease or disorder that may kill her, and she has been exposed to stories of the girls with mito who have died. Her parents says she'll die without her meds, and invasive medical prodedures could lead to death as well as not eating, sitting around in a wheelchair, not bearing any weight on legs, etc. I hope they have at least gotten her back on the vitamin regiment, because what could it hurt.
 
txsvicki said:
If, and a big IF, Justina only has somatoform disorder then I'm not so sure she'd be better off at home. She thinks she has a pretty bad disease or disorder that may kill her, and she has been exposed to stories of the girls with mito who have died. Her parents says she'll die without her meds, and invasive medical prodedures could lead to death as well as not eating, sitting around in a wheelchair, not bearing any weight on legs, etc. I hope they have at least gotten her back on the vitamin regiment, because what could it hurt.
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I am not sure she is better off at home at all. All the histrionics surrounding WHATEVER dx she has cannot be good for her mentally. To constantly hear you are near death, you need x procedure, then to hear that your dr doesn't know what s/he is talking about (and then jumping to another doc, as was reported by her past pedi) NONE of it is supportive. I can imagine that whether Justina realizes it or not, that kind of atmosphere probably puts her in a constant state of anxiety about her health, her future, her ability to recover. This is probably why one of the doctors observed that she seems to deteriorate when her mother is with her and they are discussing her condition.
 
Gardenlady said:
I am not sure she is better off at home at all. All the histrionics surrounding WHATEVER dx she has cannot be good for her mentally. To constantly hear you are near death, you need x procedure, then to hear that your dr doesn't know what s/he is talking about (and then jumping to another doc, as was reported by her past pedi) NONE of it is supportive. I can imagine that whether Justina realizes it or not, that kind of atmosphere probably puts her in a constant state of anxiety about her health, her future, her ability to recover. This is probably why one of the doctors observed that she seems to deteriorate when her mother is with her and they are discussing her condition.
Click to expand...


I completely agree.
I can't imagine how frightened she must be.




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I am not sure she has been repeatedly told she is near death. I feel (imo) certain she has been told a number of things while in the custody of DCF that may or may not be true. IF she is resuming her treatment under Dr Korson, I feel it probably confuses her given that she may very well have been told while in the custody of DCF that she does not have mitochondrial disease...that she has a psychiatric illness and that her parents may be medically abusing her.

I hope that she is medically and emotionally stable when she comes home. I hope there is a road map to her treatment while in the hands of Children's and while in the hands of DCF. I hope there is transparency on all sides. Regardless of which side of the fence you sit on, it seems clear that everyone here is in Justina's corner.
 
I don't think they'll release her from rehabilitive medical care any time soon if she's not swallowing well or showing improvement with the ability to stand on her legs, no matter what they finally decide her illness to be. Justina can't force herself to do it either whether it's in her mind, a real disorder, or both.
 
Morag said:
You may not realize it, but it's normal for feet to swell when you sit down for many hours on end- long car trip, office job, wheelchair, etc. Too bad no one has done her hair in a more becoming fashion, though.
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I noticed they were swollen by comparing them to the other girl's feet, theirs aren't swollen
 
CHICANA said:
I noticed they were swollen by comparing them to the other girl's feet, theirs aren't swollen
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Yes, that's why I mentioned causes of swollen feet and legs, such as long car or plane rides, or sitting in a chair of any sort for long periods.
 
txsvicki said:
If, and a big IF, Justina only has somatoform disorder then I'm not so sure she'd be better off at home. She thinks she has a pretty bad disease or disorder that may kill her, and she has been exposed to stories of the girls with mito who have died. Her parents says she'll die without her meds, and invasive medical prodedures could lead to death as well as not eating, sitting around in a wheelchair, not bearing any weight on legs, etc. I hope they have at least gotten her back on the vitamin regiment, because what could it hurt.
Click to expand...

BBM
Way back when this first begain, it was mentioned that she had been kept on the vitamin regimen.
 
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