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magical thyme

(14,881 posts)

28. mitochondrial disease is complicated to treat and involves multiple specialties

Thu Mar 27, 2014, 08:22 AM

Mar 2014

depending on the complex of symptoms. It effects multiple organs and it is progressive. Since she hadn't been seen or treated for more than a year by Dr. Korson, her gastroenterologist, her original psychiatrist, neurologist nor any of the other specialists that were involved in her treatment under Dr. Korson's regimen, obviously her condition will have changed. It's not like they can just pick up where they left off.

From what I had read earlier, Dr. Korson is known especially for coordinating treatment across numerous doctors, as required. "Working out the details of her treatment" requires evaluation of her current state and treatment based on that. The specialists are not all at one location.

And nowhere does it state that she is being sent back to Tufts as an in-patient. Her medical treatment is being sent back to Tufts. That is not the same thing as being an in-patient.

Unless she has a crisis that requires hospitalization, she is residing, and will continue to reside, at the Framingham facility until they are able to find a Connecticut facility to take her.

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In early March, Judge Johnson put Justina Pelletier's medical care back with Dr. Korman/Tufts [View all] magical thyme Mar 2014 OP

Are we reading the same article? MADem Mar 2014 #1

the judge says he agreed with the doctors at Childrens, but put her back under the care of Tufts. magical thyme Mar 2014 #2

Maybe I'm reading this wrong, but I think you've got it backwards. MADem Mar 2014 #3

"Justina Pelletier...will get treatment with her original doctors at Tufts Medical Center..." magical thyme Mar 2014 #4

That's from March 4th kcr Mar 2014 #6

I realize that. That is my point. magical thyme Mar 2014 #7

Exactly. LisaL Mar 2014 #8

You're free of course to interpret anything however you wish kcr Mar 2014 #9

The judge awarded custody to DCF. LisaL Mar 2014 #10

But to this day she still hasn't kcr Mar 2014 #13

Well you have to ask DCF why she hasn't got the treatment that the judge ordered. LisaL Mar 2014 #14

Why are you taking Liberty Counsel's side kcr Mar 2014 #18

I am taking Justina's side. LisaL Mar 2014 #19

Do you always do that? kcr Mar 2014 #20

What child abuse are we talking about here? LisaL Mar 2014 #22

How do we know there wasn't any? kcr Mar 2014 #23

Oh please. LisaL Mar 2014 #25

I have, including the Globe. kcr Mar 2014 #26

DCF has major problems. I would be scared and angered that this medical dispute has turned this bad. 4Q2u2 Mar 2014 #27

Oh, I'm sure they have major problems kcr Mar 2014 #30

It started with an ER doctor who "didn't believe" in mitochondrial diseases. moriah Mar 2014 #71

It did? kcr Mar 2014 #80

In a hospital with a very large mitochondrial department, too? MADem Mar 2014 #159

What good does this department do when Children's diagnosed her with somatoform? LisaL Mar 2014 #170

You don't know if they ran her through that department to exclude the diagnosis, do you? MADem Mar 2014 #193

I don't know that they didn't decide she should be an astronaut and send her to the moon either. LisaL Mar 2014 #199

Apropos of nothing. nt MADem Apr 2014 #205

the fact is that the judge put her medical treatment back under her original doctor magical thyme Mar 2014 #12

What is actually in the ruling is what matters kcr Mar 2014 #15

If the ruling is what matters, why hasn't she been given the treatment at Tufts. LisaL Mar 2014 #17

It says in the article kcr Mar 2014 #21

She's in a psychiatric facility in Framingham, now. I don't think she's getting any treatment at MADem Mar 2014 #51

Nope. She isn't. kcr Mar 2014 #53

mitochondrial disease is complicated to treat and involves multiple specialties magical thyme Mar 2014 #28

I'm not disputing any facts concerning mitochondrial disease itself kcr Mar 2014 #31

You may consider abcnews and bostonglobe rightwing sources. I don't. magical thyme Mar 2014 #32

I don't consider them right wing sources kcr Mar 2014 #33

I saw the names with ties in articles that I read some months ago magical thyme Mar 2014 #34

Oh, so it's a conspiracy kcr Mar 2014 #35

if you consider people's attempts to extricate themselves from their eff-ups a conspiracy, then yes magical thyme Mar 2014 #36

What evidence do you have that any doctor refused to consider or allow a 2nd opinion? kcr Mar 2014 #37

Boston Globe. And everybody has a personal bias, whether or not they realize it. magical thyme Mar 2014 #38

Of course they do. kcr Mar 2014 #40

This has little to do with children's rights, and everything to do with a pnwmom Mar 2014 #45

It has everything to do with it. kcr Mar 2014 #47

Judge reaffirmed the position that diagnosis made by Children's is the correct one? LisaL Mar 2014 #48

Of course it's a territorial dispute. The Harvard psychiatrists insisted that they knew better pnwmom Mar 2014 #49

Of course it is. If you just automatically buy what one side says. kcr Mar 2014 #52

Who were the abuserx? Jesus Malverde Mar 2014 #176

Well, since the state removed their daughter from their care kcr Mar 2014 #178

Did you not claim you read Boston Globe articles? LisaL Mar 2014 #93

I sure did. Note these are all claims being made by the parents. kcr Mar 2014 #100

I think they may have a problem with veracity, which probably influenced the judge's decision. nt MADem Mar 2014 #107

Nonsense. LisaL Mar 2014 #115

In reply to your non-responsive and somewhat denigrating comment, I invite your attention to the MADem Mar 2014 #118

Oh for crying out loud. LisaL Mar 2014 #114

Oh, for crying out loud, I have. kcr Mar 2014 #116

The parents were forbidden from seeking second opinion. LisaL Mar 2014 #120

No, I'm not kcr Mar 2014 #122

There is this report in the Boston Globe that they weren't allowed to get a second opinion. pnwmom Mar 2014 #182

I already addressed that in another response kcr Mar 2014 #186

She hasn't yet been given any treatment. LisaL Mar 2014 #16

treatment is not necessarily as an inpatient. magical thyme Mar 2014 #29

It's an inpatient psychiatric facility, about twenty miles outside of Boston, where Tufts Med is MADem Mar 2014 #55

Then that judge made an even worse decision. First he rules that she should get care pnwmom Mar 2014 #77

His MAR 4 decision was an interim one only. It's like kicking the can down the road. MADem Mar 2014 #78

This Boston Globe report says that the girl WILL be seeing the new medical team pnwmom Mar 2014 #81

I stand corrected and thanks for pointing that out. MADem Mar 2014 #82

Why would this have placated anyone? pnwmom Mar 2014 #83

We do not know that. MADem Mar 2014 #96

This has nothing to do with "patient privacy." Her parents had the right under privacy laws, pnwmom Mar 2014 #99

The child was in the custody of the state since last year. This is a matter of public record. MADem Mar 2014 #105

This doesn't change the fact that it was the judge's gag order, sought by the hospital, pnwmom Mar 2014 #108

Gagged or not, they didn't have all the information. They were not the child's custodians. MADem Mar 2014 #110

The gag order kept them from allowing the Tufts doctors to release their records. pnwmom Mar 2014 #112

Every record they have is OVER a year old. MADem Mar 2014 #123

Her old medical record is CRITICAL since this whole case began as a dispute between her old pnwmom Mar 2014 #125

No, that's what her parents say. The hospital says this is a case of medical child abuse. MADem Mar 2014 #130

Did you read the Boston Globe's extensive 2 part investigative piece? pnwmom Mar 2014 #133

Read it? I POSTED it. You might want to go back and check. nt MADem Mar 2014 #134

Both parts? If so, I don't understand how you could have made so many of the claims you've made. pnwmom Mar 2014 #135

Yes, both parts, and I posted them a day and a half ago. They make NO conclusions, as I pointed out MADem Mar 2014 #136

No, the paper makes no conclusions. But what it does report is enough to make clear pnwmom Mar 2014 #137

To me, it doesn't make anything clear. It could be a territorial dispute, it could MADem Mar 2014 #138

So you're dismissing everything that Dr. Korson said about being cut out of the team pnwmom Mar 2014 #139

When you can tell me what Dr. Korson said to the JUDGE, then we can talk. MADem Mar 2014 #140

You're wrong about the tests. There is NO definitive test for all mitochondrial disorders. pnwmom Mar 2014 #141

Well, whatever. It's the FIRST test that should be done, according to most sources. MADem Mar 2014 #171

A muscle biopsy is a highly invasive test, and it wasn't necessary in order to justify the invasive pnwmom Mar 2014 #179

It is not "highly" invasive. It hurts a bit. MADem Mar 2014 #192

In children it requires a general anesthetic. pnwmom Mar 2014 #195

A fifteen year old is not a "child" for purposes of this procedure. MADem Apr 2014 #207

My niece was even older and had general anesthesia for her biopsy. But you're ignoring pnwmom Apr 2014 #221

Lucky Justina is covered by Commonwealth Care. She doesn't have to pay for expensive procedures. MADem Apr 2014 #223

You know that allegation was DISMISSED. So why do you keep repeating it over and over and over? pnwmom Apr 2014 #226

You need to read the judge's ruling. The state of CT found that the parents were not fit to MADem Apr 2014 #229

I read the whole ruling and it doesn't say what you think. pnwmom Apr 2014 #231

They met with the GAL. The judge directed the MA agencies to facilitate w/CT. MADem Apr 2014 #233

So? More spoon-feeding. n/t pnwmom Apr 2014 #235

OK, CT DCF is "stupid" then. You can't have it both ways. nt MADem Apr 2014 #237

As I said, they're probably over-extended and over-worked. pnwmom Apr 2014 #238

That's pure speculation. They've interacted with the GaL. Maybe they just AGREE with MA. MADem Apr 2014 #239

I'll concede you're the expert in that. n/t pnwmom Apr 2014 #240

I don't claim expertise, but I can provide a link from someone who is. MADem Apr 2014 #241

She still hasn't seen any doctors from Tufts. And judge's ruling was in the beginning of March. LisaL Mar 2014 #91

We don't know who she has seen. Patient privacy, and all. nt MADem Mar 2014 #95

You are ignoring every published report that says she hasn't yet seen any doctors in Tufts. LisaL Mar 2014 #104

Look, unless you are her case manager, you just do not know for certain and neither do I. MADem Mar 2014 #106

Then you aren't looking. LisaL Mar 2014 #109

You'll provide links that say that, I'm sure. That state, definitively, that she has not been seen MADem Mar 2014 #111

What are you going to look for? LisaL Mar 2014 #113

The family doesn't know if that's the case or not. They've no access to her medical records. MADem Mar 2014 #117

DCF confirmed she hasn't been seen by anybody at Tufts. LisaL Mar 2014 #119

Please show me where DCF--not the family, who do not have access to her records and are not allowed MADem Mar 2014 #121

Just read my whole post. LisaL Mar 2014 #126

I did. nt MADem Mar 2014 #131

here is where they are paraphrased. magical thyme Mar 2014 #128

That kind of looks like Daily News ripping off Boston Globe. MADem Mar 2014 #129

so now you're accusing Dr. Korson of violating HIPPA for stating that he has not been involved with magical thyme Mar 2014 #143

What in hell is wrong with you? Can't you speak civilly? MADem Mar 2014 #146

You just confirmed my theory. pnwmom Mar 2014 #181

No, I base my POV on this document. MADem Mar 2014 #188

Not "as well." Based on the information MA oh so helpfully provided them with. pnwmom Mar 2014 #201

She'd tell them? You're acting like you know these people. MADem Apr 2014 #206

I'm acting like I read the media account I showed you yesterday, pnwmom Apr 2014 #219

A psychologist isn't a psychiatrist, and a number of other people testified, too. MADem Apr 2014 #222

A psychologist can be a much better therapist. Psychiatrists these days are mostly pill-pushers pnwmom Apr 2014 #224

The hospital found that she had severe and untreated PSYCHIATRIC issues. nt MADem Apr 2014 #227

YES, because the hospital INCORRECTLY ruled out a mitochondrial disorder as the cause pnwmom Apr 2014 #228

NO. CT said they were ignoring her psychiatric health, too. MADem Apr 2014 #230

No, it did not. That allegation was dismissed as you are well aware. pnwmom Apr 2014 #234

Fool me once, shame on you. Fool me twice, shame on me. MADem Apr 2014 #236

I can't believe you think it's justifiable for the parents not to be given access pnwmom Mar 2014 #180

They did not--and don't --have custody. That's why they were not given access. MADem Mar 2014 #191

All CT has to go on are the voluminous files MA is shoving at them, pnwmom Mar 2014 #200

CT can end this but they don't. Why is that? Are they weak? Stupid? MADem Apr 2014 #208

CT didn't make an independent determination. They rubber-stamped the MA decision. nt pnwmom Apr 2014 #218

You don't know that. If that were the case, why did the GaL bother to go to CT? MADem Apr 2014 #225

We DO know that Dr. Korson says he was prevented from seeing her, and he was pnwmom Mar 2014 #142

And we DO know that that same doctor testified to the judge on the 4th, and the MADem Mar 2014 #144

But his testimony was more than a year after she was taken by the hospital. pnwmom Mar 2014 #145

You don't know what treatment she eventually got at Children's; neither do I. MADem Mar 2014 #147

She has severe and persistent somatic symptom disoder, accodring to this judge. LisaL Mar 2014 #149

This case is making me ill. pnwmom Mar 2014 #151

It's unbelievable. LisaL Mar 2014 #152

Look what I just found. pnwmom Mar 2014 #153

Clearly treatment for somatoform hasn't "fixed" her. LisaL Mar 2014 #154

The charge was made that they didn't know about the condition, they had no awareness of it. MADem Mar 2014 #156

The psychiatrists ruled that she didn't have a mitochondrial disorder, pnwmom Mar 2014 #177

Her old "mito" specialist testified before the judge. So did the child. MADem Mar 2014 #190

I know how he ruled. I also know he ruled three weeks ago to put her back into pnwmom Mar 2014 #196

They make complete sense to me. MADem Apr 2014 #214

It's not telling at all. They just rubber-stamped the MA DCF recommendation, pnwmom Apr 2014 #217

No they didn't--they met with the GAL, they didn't just review papers. MADem Apr 2014 #232

Tufts itself did not file the allegation -- certain Tufts doctors other than Dr. Korson did -- pnwmom Mar 2014 #150

"Tufts itself" did, if doctors from Tufts took the action. They weren't acting as concerned MADem Mar 2014 #155

What part of these allegations (from Tufts) were dismissed don't you understand? LisaL Mar 2014 #157

What part of "You don't know WHY they were dismissed" don't you understand? MADem Mar 2014 #158

If you don't like the idea, why tolerate it? LisaL Mar 2014 #160

Because if the child is being kept from an abusive situation, then that's where she needs to stay, MADem Mar 2014 #161

I am so glad MA DCF has unlimited amounts of money to spend on children they take from other states. LisaL Mar 2014 #162

Well, how nice that you're happy about something at long last. MADem Mar 2014 #163

Did you or did you not see recent photos of her? LisaL Mar 2014 #164

I saw photos without a timestamp that could have been taken a year ago. MADem Mar 2014 #165

Anything coming from the family is biased? There are recent photos of her. How can they be biased? LisaL Mar 2014 #166

Yes. The family is prosecuting THEIR case in the Court of Public Opinion. Their views are biased MADem Mar 2014 #167

Oh, I am sure DCF wants to keep her out of the spotlight. LisaL Mar 2014 #169

Yes, because they have respect for patient/client privacy, and because it's the LAW. MADem Mar 2014 #173

Based on published reports, I have a very good idea of what Dr. Korson told the court. LisaL Mar 2014 #174

Well, your "good idea" and a few dollars will buy you a cuppa coffee at a Starbucks. MADem Mar 2014 #175

We don't have to guess why the judge ruled as he did. LisaL Mar 2014 #184

So ==that's== what you got out of four pages of detailed material? MADem Mar 2014 #187

The article said that "staff" did -- which could be a receptionist, for all we know. pnwmom Mar 2014 #183

Yeah, right--a receptionist. MADem Mar 2014 #189

You're changing the subject instead of acknowledging that she had a mental health therapist pnwmom Mar 2014 #197

The girl needed a psychiatrist. Not a PhD psychologist. MADem Apr 2014 #209

Who thinks that, other than you? Justina had plenty of M.D.'s. For a therapist, pnwmom Apr 2014 #216

The hospital and DCFs, apparently. And just because you keep insisting that "CT's determination MADem Apr 2014 #220

You aren't putting that into context. pnwmom Mar 2014 #198

CT DCF should really agree to take her. She is from CT. LisaL Mar 2014 #203

If you want to characterize CT DCF as a bunch of morons, that's your choice. MADem Apr 2014 #210

That ruling didn't change anything about his previous ruling, which was also specific. pnwmom Mar 2014 #76

I think that was a temporary decision, not a permanent one. He was playing the "better safe than MADem Mar 2014 #50

I really doubt the judge would temporarily hand her treatment over to Tufts magical thyme Mar 2014 #54

I think we're going to have to agree to disagree, here. MADem Mar 2014 #56

time will tell... magical thyme Mar 2014 #57

I think the judge's order expired when he handed the child to the Commonwealth. MADem Mar 2014 #58

again, time will tell. nt magical thyme Mar 2014 #59

So he ruled DCF has to do it. That ruling was in the beginning of March. LisaL Mar 2014 #86

I hope it doesn't take this child's death to make the doctors see sense. moriah Mar 2014 #62

Well, that infant couldn't speak for himself; a fifteen year old can. MADem Mar 2014 #63

There were many more in England, when they told juries two babies couldn't die of SIDS.... moriah Mar 2014 #64

I am not "labeling." I've repeatedly said I don't know what the deal is, here. MADem Mar 2014 #66

It's the doctors who are labeling, and that's bothering me. moriah Mar 2014 #67

Please take a look at the Children's Hospital link at post 69, and my comments as well. MADem Mar 2014 #72

Not that the hospital didn't believe it, but the ER doctor who saw her and flagged her as MSbP. moriah Mar 2014 #74

I just don't feel qualified to "do the Frist," particularly when one could also say MADem Mar 2014 #75

Sorry to bump, have been moving this weekend.. but what gets me.... moriah Mar 2014 #84

I've had one of those biopsies. They aren't fun, they hurt. MADem Mar 2014 #101

It doesn't matter which diagnosis is right or wrong. LisaL Mar 2014 #85

Sure, parents get to decide treatment. kcr Mar 2014 #87

Well, I don't know. It would be pretty expensive for DCF to take cae of all these millions of LisaL Mar 2014 #88

Exactly kcr Mar 2014 #89

Alan Dershowitz is wrong if he said that, and I think he might have had a caveat in there. MADem Mar 2014 #98

Excellent post kcr Mar 2014 #79

She does speak. Nobody listens. She is told she isn't allowed to make choices. LisaL Mar 2014 #92

That "record" is over a year old. Much water under the bridge since then. MADem Mar 2014 #94

Well as long as you are sure it's all good. LisaL Mar 2014 #103

Don't you think parents who have watched their daughter being deprived of medical treatment pnwmom Mar 2014 #42

I have no dog in this fight. I do find some things curious, though. MADem Mar 2014 #61

Don't you agree that when there are two groups of respected doctors with different opinions, pnwmom Mar 2014 #65

The Children's Hospital cannot respond to many of the allegations made by the parents, because they MADem Mar 2014 #69

The parents asked the judge to lift the gag order. It was the hospital that's been trying to cover pnwmom Mar 2014 #70

No--not "Boston" has experts--Children's Hospital in Boston has experts. MADem Mar 2014 #73

While Children's Hospital might have experts on mitochondrial disorder, my understanding is that LisaL Mar 2014 #90

Patient privacy laws would prevent you from knowing that. Doesn't mean it didn't happen. MADem Mar 2014 #97

I can only go by what is being reported. LisaL Mar 2014 #102

I can only go by what's being reported as well, and I have to say, my read of this situation MADem Mar 2014 #124

Well, judging by the way she is looking now, she might not have a long term. LisaL Mar 2014 #127

How is she looking now? All we have are dire reports from her parents. MADem Mar 2014 #132

You are not seriously suggesting that a 15 year old told this judge she prefers to be in a secure LisaL Mar 2014 #148

What I am "seriously suggesting" is that the judge used something called "judgment" MADem Mar 2014 #194

Then you haven't seen the more recent photos of her. LisaL Mar 2014 #202

And you have? You have a link, of course. .... ? nt MADem Apr 2014 #204

Google is your friend. LisaL Apr 2014 #211

It's your friend too and you made the claim so you're the one who needs to do the work. nt MADem Apr 2014 #212

I made the claim that I have seen the photos. LisaL Apr 2014 #213

How can I see the photos you say you've seen if you don't show them to me? See how THAT works? MADem Apr 2014 #215

K&R Nuclear Unicorn Mar 2014 #5

Charles Pierce wrote a good article on this octoberlib Mar 2014 #11

The religious right stepped into the vacuum. We should have been there first; pnwmom Mar 2014 #43

These parenst are abusive gerogie2 Mar 2014 #24

evidence of abuse? nt magical thyme Mar 2014 #39

Look at the interview on FNC with Kelly megen. gerogie2 Mar 2014 #41

I watched it and don't see a single thing TorchTheWitch Mar 2014 #68

Those parents are no more abusive to her than Will Pit is to his wife. pnwmom Mar 2014 #44

Exactly. LisaL Mar 2014 #46

Kick! nt Logical Mar 2014 #60

"The nazi communist state of Massachusetts" Paladin Mar 2014 #168

It doesn't have to be a tragic situation. LisaL Mar 2014 #172

Can I just say I'm fascinated by this thread. Well done everyone! riderinthestorm Mar 2014 #185