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

[Linda7NJ]

And of course the right course of treatment is removing the child from everything she knows and locking her up in a secure psychiatric ward.

That should get her to be all better.

It's more like the child was being held in protective custody. The real threat to her well being is her PARENTS.
IMO


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[AnaTeresa]

Somatoform, by definition, are physical symptoms without physical reasons.
Mitochondrial disease would explain her symptoms, ruling out somatoform.

I don't see where one precludes the other. I'm not a medical expert, so perhaps one of our verified posters could chime in, but I think it would be possible to be diagnosed with both. Perhaps she has some symptoms that are attributable to mito, while others can be ruled out as being caused by mito, and thus, point to somatoform. Say, something like lactic acidosis or relating to metabolic enzymes, those would be clearly mito, but other symptoms she's having may be better attributed to somatoform. Since we aren't her doctors, we don't really know.

In my opinion, I could see it happening. Justina is a very sick child. It's possible the stress of her situation could trigger somatoform, which would worsen her issues, given her symptoms of mito, and create the downward spiral we see now.

Perhaps it's not really a question of either/or - perhaps it's both, and that's why Tufts is back in play.

 

[Linda7NJ]

If present behavior is a predictor of past behavior (which it may not be, given the extreme stress everybody is under) it isn't very hard to see some potential issues with the general tendency of describing Justina's treatment in very dramatic terms (she's been tortured and dying for more than a year now)

If the same thing went on to some degree before Justina was taken into custody it is not difficult to imagine why a child might be overly distressed about her somatic symptoms.

Totally agree.
Her parents certainly have a knack for spin and drama!

I smell a pattern



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[Donjeta]

And of course the right course of treatment is removing the child from everything she knows and locking her up in a secure psychiatric ward.
That should get her to be all better.

Not sure why an unsafe psychiatric ward would have been considered better but according to the judge it seems like she could have been out of there in a couple of months if the parents had been able to curb the histrionics.

 

[jjenny]

I don't see where one precludes the other. I'm not a medical expert, so perhaps one of our verified posters could chime in, but I think it would be possible to be diagnosed with both. Perhaps she has some symptoms that are attributable to mito, while others can be ruled out as being caused by mito, and thus, point to somatoform. Say, something like lactic acidosis or relating to metabolic enzymes, those would be clearly mito, but other symptoms she's having may be better attributed to somatoform. Since we aren't her doctors, we don't really know.

In my opinion, I could see it happening. Justina is a very sick child. It's possible the stress of her situation could trigger somatoform, which would worsen her issues, given her symptoms of mito, and create the downward spiral we see now.

Perhaps it's not really a question of either/or - perhaps it's both, and that's why Tufts is back in play.

But BCH/DCF accused parents of medical abuse because they were treating her at Tufts for mitochondrial disease. BCH wanted her meds discontinued. The GI doctor she came in to see was not allowed to see her.
So what are the parents accused of now, if her treatment at Tufts was not medical abuse?

 

[Donjeta]

That's the parents version and it could be a thousand things are left out.

 

[jjenny]

Well, we haven't seen her medical charts and we don't know if the parents version is exactly what was going on. Wasn't there an article that implied that she was still getting the vitamin cocktail after being taken into custody?

But in many cases people wouldn't want to be treated for cancer if it isn't certain that they have it and sometimes cancer treatments are withheld because the side effects are expected to be worse than the disease (eg. prostatic cancer). It could be something similar.

She was taken meds for other conditions, such as medication for rapid heart rate, which BCH wanted stopped.
If she has rapid heart rate, how is that justifiable?

 

[jjenny]

That's the parents version and it could be a thousand things are left out.

But it's supported by the treatment plan BCH made for Justina.

 

[Donjeta]

But it's supported by the treatment plan BCH made for Justina.

I have not seen it, can you share a link?

 

[jjenny]

I have not seen it, can you share a link?

You can see it in this article. BCH forbade second opinions and wanted her meds such as beta blocker for rapid heart rate to stop. BCH didn't want parents to administer flushes (I presume through her cecostomy button). She was to be fed by mouth. BCH also expected her to ambulate. She is still not ambulating. I believe the feeding tube was put into her eventually, since she would not feed by mouth. I think she still needs her flushes.
So I don't believe the "patient" is capable of doing things BCH expected the "patient" to do.
http://www.dailymail.co.uk/news/art...lletier-kidnapped-doctors-use-guinea-pig.html

 

[Donjeta]

She was taken meds for other conditions, such as medication for rapid heart rate, which BCH wanted stopped.
If she has rapid heart rate, how is that justifiable?

We still have not seen her medical charts... no way for us to tell if she had a rapid heart rate or needed medication for it.

In general, reasons to take people off meds include but are not limited to,
1. they're taking multiple medications that have opposite effects
2. they're taking multiple medications that interact in harmful ways
3. they're taking medications that they don't need anymore or never really did
4. they're having harmful side effects from the medication
5. they could potentially start having harmful side effects from the medication
6. the medication is considered ineffective
7. it is thought that the symptom responds better to some other treatment
8. they want to start some other medication that does the same thing cheaper or safer
9. they want to test and see if the person does OK without the meds because most people don't want to take drugs they don't need

IIRC it was reported that her medical work-up didn't fit with what was expected. Maybe they found nothing wrong with her heart rate. And I also seem to recall that she was taking both drugs that lower blood pressure and then something else to treat low blood pressure, and that may not make a whole lot of sense. Or it could be they thought that her rapid heart rate was related to anxiety and it would make more sense to treat the causes of her anxiety than the heart rate.

There is no way for us to know.

 

[jjenny]

We don't have her medical charts. But I can see video of her sitting in her wheelchair mumbling and looking out of it. She can barely talk. It's not even understandable to me what she is saying.
She looks to have male pattern baldness and she is a teen female.

 

[Donjeta]

You can see it in this article. BCH forbade second opinions and wanted her meds such as beta blocker for rapid heart rate to stop. BCH didn't want parents to administer flushes (I presume through her cecostomy button). She was to be fed by mouth. BCH also expected her to ambulate. She is still not ambulating. I believe the feeding tube was put into her eventually, since she would not feed by mouth. I think she still needs her flushes.
So I don't believe the "patient" is capable of doing things BCH expected the "patient" to do.
http://www.dailymail.co.uk/news/art...lletier-kidnapped-doctors-use-guinea-pig.html

The source of the story:

Distraught parents reveal their Kafkaesque nightmare to MailOnline

Boston Children's Hospital and the Department of Children and Families have refused to comment, citing a gag order imposed by the court.

Read more: http://www.dailymail.co.uk/news/art...ped-doctors-use-guinea-pig.html#ixzz3134lunQM
Follow us: @MailOnline on Twitter | DailyMail on Facebook



We know what the parents are saying BCH is saying but we are not privy to what BCH is saying for real, and then again, do the parents know either if they're complaining no one tells them anything?

 

[Donjeta]

We don't have her medical charts. But I can see video of her sitting in her wheelchair mumbling and looking out of it. She can barely talk. It's not even understandable to me what she is saying.
She looks to have male pattern baldness and she is a teen female.

I saw the video but I'm not sure how any of it proves that she needs medication for rapid heart rate or anything about her diagnosis.

No reason that I can see why you couldn't film both mitochondrial patients and teens with a psychiatric diagnosis mumbling and looking out of it.

 

[jjenny]

The source of the story:




Read more: http://www.dailymail.co.uk/news/art...ped-doctors-use-guinea-pig.html#ixzz3134lunQM
Follow us: @MailOnline on Twitter | DailyMail on Facebook



We know what the parents are saying BCH is saying but we are not privy to what BCH is saying for real, and then again, do the parents know either if they're complaining no one tells them anything?

The copy of the treatment plan is provided with the story. Do you not see all this in the plan?

 

[Donjeta]

The copy of the treatment plan is provided with the story. Do you not see all this in the plan?

Thanks, I didn't scroll far enough.



Midodrine, one of the medications the plan says she was to be taken off on has not been studied enough to say it's safe and effective, and it's on tentative FDA approval pending further research.

Midodrine (brand names Amatine, ProAmatine, Gutron) is a vasopressor/antihypotensive agent. Midodrine was approved in the United States by the Food and Drug Administration (FDA) in 1996 for the treatment of dysautonomia and orthostatic hypotension. In August 2010, the FDA proposed withdrawing this approval because the manufacturer, Shire plc, has failed to complete required studies after the medicine reached the market.[1][2]

In September 2010, the FDA reversed its decision to remove Midodrine from the market and has allowed it to remain available to patients while Shire plc collects further data regarding the efficacy and safety of the drug.[3] Shire plc announced on September 27, 2011 that it was continuing the process to work with the FDA towards a final approval of the drug.[4]

Midodrine - Wikipedia, the free encyclopedia


http://www.medicinenet.com/midodrine-oral/article.htm

There are a number of warnings about potential side effects in the article (including weakness) and the drug is intended to treat orthostatic hypotension (the lowering of blood pressure when people are standing up) which might have been pointless and even harmful if Justina was too weak to be up.

WARNING: Midodrine should only be used in carefully selected patients. When you are lying on your back, this medication causes a significant increase in blood pressure. Your blood pressure will be monitored carefully during treatment.

 

[CHICANA]

unfortunately, Justina isn't the only child victim who has parents claiming they have some kind of religious freedom to do whatever they want. Misuse of religious teachings is common in domestic violence cases. Men, primarily, use it as a form of control. I attended a conference the other day and a lot of time was spent on it.

JMO

I didn't see anything regarding religious freedom claims. Where can I find this, or do you have a link ?

 

[CHICANA]

I think what we are seeing is narcissistic injury/wound/rage



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I see that too, but I see it on the part of DCF

 

[AnaTeresa]

Thanks, I didn't scroll far enough.



Midodrine, one of the medications the plan says she was to be taken off on has not been studied enough to say it's safe and effective, and it's on tentative FDA approval pending further research.



Midodrine - Wikipedia, the free encyclopedia


http://www.medicinenet.com/midodrine-oral/article.htm

There are a number of warnings about potential side effects in the article (including weakness) and the drug is intended to treat orthostatic hypotension (the lowering of blood pressure when people are standing up) which might have been pointless and even harmful if Justina was too weak to be up.

Makes you wonder if they were trying to take her off this medication to see if some of her other symptoms would improve.

I'm still on the fence about this case. I think DCF was hasty and perhaps engaged in some CYA. But it's a stretch to me to assume that, hours after her arrival, the hospital was cackling evilly and planning to turn Justina into a lab rat. Since we can't see her chart, we don't know what their reasons are. But let's not assume that discontinuing medications is being done maliciously. It could simply be part of the differential diagnosis process.

I think it's possible that the doctors at BCH didn't understand exactly what they were dealing with, and that started this whole mess. And perhaps that's why Tufts is back in play. While they may be wrong, I think that it's a real stretch to assume that those errors are being done intentionally or maliciously. Taking Justina off a drug could have a variety of real, legitimate, helpful reasons. Without her chart, we really don't know.

 

[CHICANA]

Since the judge cited some issues with the parents' capability of taking care of Justina's needs and the visitation has so far been heavily supervised (I think someone mentioned armed security) and now the requirements include visits and family therapy I'm inclined to think that an important part of the change they want to see probably has something to do with how the parents are behaving.

The dollar amount paid to the company is rather meaningless without the information regarding how much services they've rendered and what kind of results they've been getting. Probably no one would want Justina's case handled by people with no previous experience handling difficult cases so I think that if they've been paid for services before it's better than if not.

I think they just want the parents to shut up. The armed guards and limited visits lead people to believe the parents are guilty of something which is exactly what the state wants. It's ridiculous, these people aren't dangerous.