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

[jjenny]

I don't think that's how somatoform disorder works.

How does it work, exactly? Such a mysterious disorder for which there is no test. Yet somehow more believable than mitochondrial disease? Says who? BCH?
In addition her numerous symptoms appear to fit those of mitochondrial disease. Yet I am supposed to believe BCH was able to rule out mitochondrial disease she was treated for over a year, in a couple of days?

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631

 

[jjenny]

Didn't I read up thread her blood labs also fell within normal ranges? Something about the results weren't corroborating the dx of mito iirc


Sent from my iPhone using Tapatalk

"In addition, a single blood or urine lab test with normal results does not rule out a mitochondrial disease. This is true for organic acids, lactic acid, carnitine analysis and amino acid analysis. Even muscle biopsies are not 100% accurate."

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934633/k.E5DC/Getting_a_Diagnosis.htm

 

[Donjeta]

How does it work, exactly? Such a mysterious disorder for which there is no test. Yet somehow more believable than mitochondrial disease? Says who? BCH?

All I know is that the judge was presented everybody's version of the facts and he sided with the DCF. It is imo possible that he may have had some reason to.

 

[Donjeta]

"In addition, a single blood or urine lab test with normal results does not rule out a mitochondrial disease. This is true for organic acids, lactic acid, carnitine analysis and amino acid analysis. Even muscle biopsies are not 100% accurate."

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934633/k.E5DC/Getting_a_Diagnosis.htm

A single normal result wouldn't but if everything was normal it might be worth considering other options.

 

[jjenny]

A single normal result wouldn't but if everything was normal it might be worth considering other options.

What was normal? This child had trouble walking.
She had a stroke at age 4. She has heart problems. In other words, her numerous symptoms fit mitochondrial disease.

 

[jjenny]

All I know is that the judge was presented everybody's version of the facts and he sided with the DCF. It is imo possible that he may have had some reason to.

Yea, it's possible he has a reason. I just wonder what that reason is.
And never mind that MA DCF hasn't even done what that judge wanted it to do. Judge wants them to send her to CT. Last I checked she is still in MA.

 

[Donjeta]

What was normal? This child had trouble walking.
She had a stroke at age 4. She has heart problems. In other words, her numerous symptoms fit mitochondrial disease.

It is possible she has mito but considering that the judge knows more than we do and thought taking Justina into custody was justified I would like to hear the DCF side before throwing them all to the lions.

 

[Donjeta]

Yea, it's possible he has a reason. I just wonder what that reason is.
And never mind that MA DCF hasn't even done what that judge wanted it to do. Judge wants them to send her to CT. Last I checked she is still in MA.

IIRC I read that some CT facilities turned her down because they had been threatened.

 

[jjenny]

It is possible she has mito but considering that the judge knows more than we do and thought taking Justina into custody was justified I would like to hear the DCF side before throwing them all to the lions.

DCF had talked. They made claims they are working to send Justina to CT. That same judge in his ruling says they need to work hard to send her to CT. Yet she is in MA and doesn't appear to be going anywhere.

 

[jjenny]

IIRC I read that some CT facilities turned her down because they had been threatened.

Why does she need to be in a facility? DCF should return her to the parents. They have produced zero evidence that parents are somehow dangerous for her.

 

[Donjeta]

Why does she need to be in a facility? DCF should return her to the parents. They have produced zero evidence that parents are somehow dangerous for her.

That we know of.

 

[jjenny]

That we know of.

Well I guess we can just accept they have some evidence they are hiding.
Super secret evidence. Even though she was ice skating while living at home and is now in wheelchair.
DCF knows best.

 

[1&2&3]

A puzzling part to me is how was Justina ice skating and then suddenly had a rapid decline? That appears to be the mysterious medical question that needs to be answered. What caused this?

 

[jjenny]

A puzzling part to me is how was Justina ice skating and then suddenly had a rapid decline? That appears to be the mysterious medical question that needs to be answered. What caused this?

DCF isolated her from her family and friends. She is allowed one hour per week of supervised visitations from family. It would not be surprising if even a healthy child declined under such conditions.
I also presume the meds she was for mitochondrial disease were discontinued since DCF doesn't believe she has it. From what her family said, she has a heart condition.
It could very well be she needs to be on the meds.

 

[i.b.nora]

A couple of snips from the Boston Globe article:

"They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t 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 Justina’s speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death."

And

"She had been born prematurely and had struggled with learning difficulties in public school for years. Then, in early 2012, her parents persuaded the local school district to pay for Justina to attend an expensive private school for children with learning disabilities. Justina loved the school and formed close friendships. When her mounting fatigue made it too difficult for her to walk several hundred yards to the cafeteria, her friends took turns eating with her in a classroom."

From: http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

[Donjeta]

Well I guess we can just accept they have some evidence they are hiding.
Super secret evidence. Even though she was ice skating while living at home and is now in wheelchair.
DCF knows best.

Yeah, who knows. It is possible that they told the judge that they didn't have any evidence that Justina needed to be in DCF custody and they just wanted to put her in a psych ward for the heck of it, and the judge said oh, ok, that's a perfectly reasonable request, let's do it and see what happens.

*If* her inability to walk was psychological, it might be rather impossible for her to be cured now because if she was cured she'd be betraying her family, in a way, as their case is that she is very sick and getting worse.

 

[jjenny]

Yeah, who knows. It is possible that they told the judge that they didn't have any evidence that Justina needed to be in DCF custody and they just wanted to put her in a psych ward for the heck of it, and the judge said oh, ok, that's a perfectly reasonable request, let's do it and see what happens.

*If* her inability to walk was psychological, it might be rather impossible for her to be cured now because if she was cured she'd be betraying her family, in a way, as their case is that she is very sick and getting worse.

Well if it's psychological because she is separated from her family, then returning her should cure her.
And not returning her could kill her.
Seems rather simple to me.
Whatever BCH and DCF did to her doesn't seem to be working.
There is no reason whatsoever for them to continue to keep her away from her family if they can not make her better.

 

[Donjeta]

It started before she was separated from her family though so *if* it is psychological it seems like there was something else behind it initially although the separation and the turmoil no doubt now have their effect on her whether she has mito, somatoform or some other diagnosis.

 

[jjenny]

It started before she was separated from her family though so *if* it is psychological it seems like there was something else behind it initially although the separation and the turmoil no doubt now have their effect on her whether she has mito, somatoform or some other diagnosis.

She has a whole bunch of symptoms that fit mitochondrial disorder.
Childhood stroke could be an initial manifestation of mitochondrial disorder. Surely no one is going to argue she somehow caused her own stroke at age 4 because of somatoform.
Her bowel issues could be a symptom of mitochondrial disorder.
Muscle weakness could be a symptom of mitochondrial disorder.
For BCH to just dismiss this diagnosis within days and come up with somatoform (for which there are no tests) seems ludicrous to me.

 

[mitzi]

It started before she was separated from her family though so *if* it is psychological it seems like there was something else behind it initially although the separation and the turmoil no doubt now have their effect on her whether she has mito, somatoform or some other diagnosis.

It started before she was separated from her family BECAUSE she had the flu! When you have mitochondrial disease, any infection becomes life threatening. So her parents took her to see her former gastro Dr., who had recently gone to Boston Children's, but BCH NEVER let him see her, and an emergency Dr. who was 'wet behind the ears' (recently graduated), decided it was somatoform. Then put her in Bader 5. What's not to understand?