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zazen

(2,978 posts)

34. sickening--this happens with parents of kids with ehlers-danlos syndrome

Wed Feb 26, 2014, 09:14 AM

Feb 2014

There's a major movement in my EDS group to help parents, a few of whose kids have been taken away because the bruising, dislocation, poor scarring, dysautonomia, fatigue, pain, and other issues around EDS (which is only now being recognized as a serious, debilitating disorder of connective tissue throughout the body). Doesn't matter how much documentation they have.

And yes, the social workers and shrinks get in there with their ideological biases and refuse to see anything else. I think when you can't see most of your supposed "disorders" under a microscope you're even more locked into defending their reality. Ego, ego, ego. Meanwhile, these kids have been seriously harmed by somatoform and Munchausen diagnoses or just outright accusations that their parents (who are desperately taking their kids to specialist after specialist) are abusing them. (Right--abusive parents show off their kids' bruises).

Grrr.....

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Mom of Sick Connecticut Teen 'Collapses' in Court After Judge Sends Kid to Foster Care [View all] magical thyme Feb 2014 OP

Why is this a story? LeftyMom Feb 2014 #1

why is this a story? seriously? magical thyme Feb 2014 #3

How many kids in state custody haven't you heard of? LeftyMom Feb 2014 #5

mind you that the gag order directly violates the 1st amendment, and the ACLU is getting involved magical thyme Feb 2014 #9

The doctor at Tufts is risking his career by speaking out despite the gag order. pnwmom Feb 2014 #82

This message was self-deleted by its author PotatoChip Feb 2014 #44

I agree kcr Feb 2014 #13

This is a dispute in diagnosis between two top hospitals, with the state choosing the side pnwmom Feb 2014 #20

It is not a dispute between two hospitals kcr Feb 2014 #29

Tufts diagnosed and treated successfully for Mitochondrial Disease for 2 years. magical thyme Feb 2014 #40

I've read the Boston Globe articles kcr Feb 2014 #41

everything I've read on it says they did take her for no good reason. magical thyme Feb 2014 #43

I think you and I are interpreting things very differently kcr Feb 2014 #45

the simple fact that they totally excluded the initial diagnosing doctors from consultation tells me magical thyme Feb 2014 #47

What do they do where you work when they suspect child abuse? kcr Feb 2014 #56

suspected child abuse is one thing. but throwing out an existing diagnosis and treatment plan magical thyme Feb 2014 #59

How could they not throw it out? kcr Feb 2014 #65

Oh please. LisaL Feb 2014 #69

Talk about thin air kcr Feb 2014 #70

the parent's story is NOT the only story we are getting. Dr. Korson has been interviewed magical thyme Feb 2014 #76

Like I said kcr Feb 2014 #81

um, now you are accusing the Chief of Metabolism Service/Director of the Metabolic Disorder Clinic magical thyme Feb 2014 #71

Um, no, I didn't kcr Feb 2014 #72

If this was a case of Munchausen by proxy, the child should have improved LisaL Feb 2014 #108

Should but not always kcr Feb 2014 #111

Yours is the knee jerk reaction, responding as you do because Glen Beck is among pnwmom Feb 2014 #48

My non knee jerk knee jerk reaction happened before Glen Beck hopped on board n/t kcr Feb 2014 #53

It's a dispute between a top mitochondrial doctor at the Tufts hospital pnwmom Feb 2014 #46

No, I'm not kcr Feb 2014 #54

Yes, you are. You said this was "ginned up right wing outrage." pnwmom Feb 2014 #55

I said it was ginned up outrage because it is indeed ginned up outrage kcr Feb 2014 #57

The fact that they are wrong most of the time doesn't mean they're wrong THIS time. pnwmom Feb 2014 #60

It's not Boston Children's job to support the parents request to lift the gag order kcr Feb 2014 #63

If Boston Children's is doing the right thing, then lifting the gag order will support the hospital. pnwmom Feb 2014 #64

But that isn't up to Boston Children's kcr Feb 2014 #67

The judge issued the gag order in response to Boston Children's request for a gag order. pnwmom Feb 2014 #77

That may be, but it was still the judge who issued it. kcr Feb 2014 #83

Why should lifting the gag order help the parents if the hospital has nothing to hide? pnwmom Feb 2014 #85

It isn't about having nothing to hide kcr Feb 2014 #87

I can't believe that so-called progressives don't side with the ACLU on the 1st Amendment issue here pnwmom Feb 2014 #92

The ACLU, who haven't even decided if they're going to get involved in this case? kcr Feb 2014 #98

Where did I use the word kidnap? n/t pnwmom Feb 2014 #99

That is the parent's claim and those of those in the story speaking on their behalf kcr Feb 2014 #100

I completely understand how they feel that way. The doctors at Tufts are excellent doctors pnwmom Feb 2014 #101

The doctors at Tufts are excellent, but not at Boston Children's? kcr Feb 2014 #102

Both hospitals have excellent doctors, and it should be up to the parents, not the state, pnwmom Feb 2014 #104

You're right, it isn't up to the state to decide kcr Feb 2014 #105

But the only "abuse" is that the state has decided that the girl's illness is psychosomatic, pnwmom Feb 2014 #107

That's what the parents claim. kcr Feb 2014 #114

That is exactly what the state is doing. It has sided with one set of doctors over another. n/t pnwmom Feb 2014 #115

And the state just randomly decided to rip a child away from her parents because of this kcr Feb 2014 #126

The State decided to listen to the Harvard psychiatrists who had taken over her care, pnwmom Feb 2014 #129

but you're talking as if it's certain the child was abused... dionysus Feb 2014 #133

No, I'm not kcr Feb 2014 #134

If it turns out that the parents have abused this child Orrex Feb 2014 #73

Your question doesn't make a lot of sense. Want to try again? n/t pnwmom Feb 2014 #78

If you are once again shown to be wrong, will you admit it? Orrex Feb 2014 #88

Sure. Just as soon as you admit your question didn't make any sense pnwmom Feb 2014 #91

My mistake; you're advocating for Tufts Orrex Feb 2014 #103

Are you suggesting that advocating for care by the metabolic specialist at Tufts pnwmom Feb 2014 #106

I'm saying that I'd be interested to hear more than one side of the story Orrex Feb 2014 #117

Wrong. The hospital has been leaking its side of the story all along. That's why pnwmom Feb 2014 #125

We also have the judge's side. Orrex Feb 2014 #128

the child has been out of her parent's care for over a year magical thyme Feb 2014 #112

Well, since we have only the story of one interested party... Orrex Feb 2014 #116

we also have the story of Dr. Korson and the Globe was able to access medical records magical thyme Feb 2014 #122

It's interesting that the judge sees good reason to take the child from the parents Orrex Feb 2014 #127

not to me, based not only on what I've read about this case, but my personal experiences magical thyme Feb 2014 #131

Ginned up outrage? A top medical facility diagnosed her and treated her successfully for years magical thyme Feb 2014 #26

The implications are not staggering kcr Feb 2014 #75

I read about this in the MSM yesterday. You are the one all concerned about rw websites, not me. magical thyme Feb 2014 #79

You should be concerned about them kcr Feb 2014 #86

Ask the ACLU. Governmental overreach is as much a concern of liberals pnwmom Feb 2014 #17

Are you kidding? LisaL Feb 2014 #66

I would go crazy if that was happening to my family. GreenPartyVoter Feb 2014 #2

this reads like the beginning of a stephen king novel.... Adam051188 Feb 2014 #4

Agree Sgent Feb 2014 #6

yes, there is more than one doctor. but it started with one doctor. magical thyme Feb 2014 #10

There could well be an institutional mindset at work here. LiberalAndProud Feb 2014 #14

Anything is possible Sgent Feb 2014 #15

the ER physician at Children's started this magical thyme Feb 2014 #27

Good grief. enlightenment Feb 2014 #109

I don't know. But when I saw it I was absolutely sickened. nt magical thyme Feb 2014 #113

That is really distressing. enlightenment Feb 2014 #121

Yeah, there's something missing. The family is trying to get the gag order lifted. pnwmom Feb 2014 #19

The gag order is there Sgent Feb 2014 #22

There shouldn't be any question of IF. How can a judge not allow the girl's parents, pnwmom Feb 2014 #23

how is ordering a 15 year old to not talk about her own situation helping her? magical thyme Feb 2014 #61

I've read numerous articles throughout the day at work magical thyme Feb 2014 #7

lawyers have been on this... magical thyme Feb 2014 #11

What is missing is because of the judge's gag order on the parents and the hospitals. pnwmom Feb 2014 #21

What the fuck? Beaverhausen Feb 2014 #8

If the teenager had the disease her parents say she has gerogie2 Feb 2014 #12

You are wrong. The disease isn't "easily confirmed by looking at her cells in a microscope." pnwmom Feb 2014 #18

Oh Yes the Doctors are wrong but the parents and you are right because of the Internet gerogie2 Feb 2014 #95

The doctor at Tufts -- the expert in metabolic disorders who was treating her -- pnwmom Feb 2014 #97

There are a number of illnesses and diseases that impair movement and cause neurological symptoms magical thyme Feb 2014 #24

Right! it's a conspiracy gerogie2 Feb 2014 #93

Dr. Korson's years of exams, evaluations and successful treatment outweigh magical thyme Feb 2014 #96

also, the reason "her parents say" she has this is because she was diagnosed 3 years ago with it magical thyme Feb 2014 #25

That's false. LisaL Feb 2014 #68

I know this family gaspee Feb 2014 #16

having no children myself, I can only begin to imagine what they are suffering. magical thyme Feb 2014 #36

That's awful! My Good Babushka Feb 2014 #28

from what I've read, the courts have pretty much forced Tufts out of it magical thyme Feb 2014 #31

It just seems like My Good Babushka Feb 2014 #33

here is an interview with Dr. Mark Korsen, Justina's (real) doctor magical thyme Feb 2014 #37

I'm promoting the story where I can. My Good Babushka Feb 2014 #38

here are some more links I just found, with much more backstory from the Globe magical thyme Feb 2014 #39

i am able to read both links off your post. nt alp227 Feb 2014 #62

HIPAA can be overridden by court order in cases where medical information is required. Warpy Feb 2014 #84

the judge is probably in the thrall of Children's and their Harvard ties magical thyme Feb 2014 #89

That doctor IS strongly advocating for her, but he's being deliberately excluded from pnwmom Feb 2014 #49

OK, so where is the RW link blaming Obama for this? Did the Feds do the kidnapping? nt kelliekat44 Feb 2014 #30

cute, but nobody is blaming Obama or the Feds. This is about state overreach combined magical thyme Feb 2014 #32

sickening--this happens with parents of kids with ehlers-danlos syndrome zazen Feb 2014 #34

for comparison, some background on Somatoform Disorder magical thyme Feb 2014 #35

I am reminded of the long fight needed to get chronic fatigue disorder hedgehog Feb 2014 #42

When I was growing up, they still thought asthma was psychosomatic. pnwmom Feb 2014 #50

and they thought "refrigerator mothers" caused autism! hedgehog Feb 2014 #135

Oh yes -- I remember that! n/t pnwmom Feb 2014 #136

Former fed prosecutor and BOD member of MSPCC calls for shut down of Bader 5 magical thyme Feb 2014 #51

Thanks, magical, for all your work on this. pnwmom Feb 2014 #52

I needed to. It is important for 1st amendment reasons, but also overreach and conflict of interest magical thyme Feb 2014 #58

Excellent post KamaAina Feb 2014 #74

Except in her case, the term might actually apply. pnwmom Feb 2014 #80

well, then I'll amend to say she is unable to walk due to ataxia and possible magical thyme Feb 2014 #90

Right. It's not ordinary paralysis. It's ataxia and profound muscle weakness as a direct pnwmom Feb 2014 #94

Dumb question: Blue_Tires Feb 2014 #110

Dr. Korson from Tufts has spoken out and did try very hard to be included magical thyme Feb 2014 #118

Instead of just the doctor speaking, Blue_Tires Feb 2014 #120

they aren't in a position to do anything legally. magical thyme Feb 2014 #124

Doesn't Children's realize they're setting themselves and the Commonwealth Blue_Tires Feb 2014 #130

they either totally believe they are in the right, or have so much power they can get away with magical thyme Feb 2014 #132

Is it just me? opiate69 Feb 2014 #119

and then there is this: Children's policy on Wards of the state magical thyme Feb 2014 #123