This is scaring me!

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It's difficult to know exactly what's going on here. It certainly sounds wrong but we only have a little information here. As a physician, I have seen some crazy things including children who were given diagnoses they didn't really have because of Munchausen by proxy. One girl ended up with short gut and a liver transplant and died. It was extremely sad. So perhaps Boston Children's is doing something crazy or perhaps there is much more to this story than is divulged here. I don't know. That their Tufts doctor is dismayed seems like their is poor communication between doctors and a lack of coordination/collaboration.
 
I know I thought of Munchausen by proxy. You are right we don't know the whole story. But it scares me as we are currently seeking a second opinion for our daughter trying to figure out what is going on with her. We had already decided not to go to Boston and now I am even happier with that decision. Being a retired medical person myself I know there is often more to the story then meets the eye but I have also seen the hospitals do some crazy stuff saw well.
 
(((HUGS))) A second opinion is normal. You are just looking for help and clarity which is what any good parent would do. Hope you get some useful answers and that Caitlyn feels better soon!
 
Just a 'hello' from Boston with the comment that there is another major hospital here. My girls are patients at Mass General and we have been SO happy with their care. We went there when Children's TOTALLY botched the diagnosis for my older dd. Grrr. But it worked out for the best as we LOVE MGH, and we have found many benefits from being a smaller hospital where everyone knows everyone else.

btw, re the original post :), I agree that we are certainly not getting the whole story, and that M by Proxy is likely what they're concerned about. Sad.....
 
A follow up to the Justina Pelletier case
http://benswann.com/exposed-boston-...dy-of-multiple-children-against-parents-will/
I have been following this story as it really scares me. I have now heard multiple stories from people about this happening to other kids as well. There are even stories from a few other hospitals doing similar things though none as long term as Boston.
I am just so saddened and frightened how can we trust doctors and hospitals?
What about cases like ours where we are trying to figure out what is going on and are unsure so have been seeing different doctors?
Help This is scaring me!
 
Kim

I understand that you are frightened by these stories. I have to believe these are exceptions, not the norm. You are a great mom and you are doing the right thing by seeking the specialists that Caitlyn needs. Stay strong and determined and use your energy to focus on finding the answers you're seeking.
 
I've seen this story several times but I agree with greypup this is the exception not the norm. I wouldn't let the fear of this prevent you from seeking out opinions for Caitlyn. You are doing everything you can to find her relief of symptoms and answers for treatment.

It seems the last update I read was that 11 or so legislators have gotten involved in getting the girl released to her parents.
 
The media piece is giving only one side of the story. I am sure we won't hear the other side until the case is dealt with in courts as lawyers are involved. I agree the thought that your kids can be taken away from you because of advocating for your kid is horrible. I hope the truth is discovered and the girl is looked out for in the best possible way.

I guess because they are stating this is a mental disorder she can't fight for emancipation so she could get out of the thumb of child protective services... I haven't seen any kid truly helped when child services are involved, just lesser degrees of evil.
 
Another mom here who is frightened by this case. We are reluctant to follow the path recommended by our pediatric GI but are we putting our custody at risk?

Rationally we know the Pelletier case is an outlier, but my nightmares continue.
 
I haven't followed this story, have only read what you've posted but, I think there is much more than is being said. If I've read it correctly, this girl was on mitochondrial and pain medications for years but was taken off these meds when she was put in the hospital's custody and this happened a year ago... it's not mentioned in the article but I'm curious to know how her health is now that she's been off the meds??? I would imagine if, mitochondrial-wise, she is doing fine then, perhaps, she really didn't have this disorder and the hospital had some justification for doing what they've done??? IDK but you'd think how she's responded physically since being off the medications would give some clarity as to her diagnosis??

Similar situations have happened at Toronto's Hospital for Sick Kids as well... it's heartbreaking situation all around!
 
I wouldn't,t lose any sleep over this story,seems obvious that the hospital has spotted something that has set alarm bells ringing!it,ll be like the UK they won,t be allowed to disclose what's going on behind the scenes,concerned parents asking questions,even awkward ones shouldn't,t worry.
 
Tess,
Her health has declined immensely since being forced to come off her medications. She went from being active and doing well to now being in a wheelchair. When I first heard this story I thought oh the kid was being abused but the more I read the more I think that the hospital is wrong. The biggest red flag is the lead doctor is doing research on what he claims is wrong with the girl. Research that he is being paid for. The second red flag is her decline in health. Plus her previous doctors say that they diagnosed her and she truly has this illness.
 
Tess this happened at Sick Kids? I was banking on the US Lawyers wanting a case and was praying it doesn't happen here... now that theory is blown out the water!
 
I didn't follow the stories so I don't know any details but approx 1-2 years ago there was a case abt a baby - I think it had something to do with with life support or end-of-life decisions. I remember 'custody' (in as far as who was allowed to make decisions - baby was inpatient so not home with parents) was taken away from parents and they took the case to court. And years ago, I remember another case abt an older child and the parents refusing some sort of treatment, again remember it went to court bcz hospital said parents were endangering child.

However, I really do believe these are extreme situations. The situation kimmidwife is describing sounds crazy - I can't believe that cud happen, wirth the girl getting sicker, without some explanation that's not public! :eek: IDK?? But I really can't believe this step can be taken without very strong justification. :eek:
 
Munchausen by proxy I suspect.
The "new team" likely tested for mito and found the child does not have it.
They may've also found levels of a toxin/unusual substance/high levels of a safe substance that when given in quantity is toxic (suspected to be administered by a parent) that would cause mito-like symptoms, which are very generalized and affect multiple organ systems.

That they got custody in FOUR DAYS tells me they had hard data against the parents. Don't let this scare you, Kim. There's no way the hosp would've moved so fast without some irrefutable evidence.
 
This is very concerning! We've had several doctors disagree with diagnosis and treatment plans for both of my sons. (We also heard mental illness incorrectly diagnosed - this is frequently done when doctors have no clue.) One hospital or group of doctors claim should never be enough to claim custody in a situation like this.
 
I too thought this was probably a case of Munchausen by proxy. But as details have come to light this really seems to be a case where one doctor is taking inappropriate actions. The kicker oft he whole thing is that this doctor making this new diagnosis is doing research on it that he is being paid for and writing about it. A little conflict of interest?
 
I don't know why everyone is siding with the parents.
As overloaded as DCF likely is, they wouldn't be doing this without EVIDENCE of a verifiable kind.

I am certain physicians have been assessing this girl. What they have found is NOT public knowledge; it was apparently enough to warrant this action by DCF.
Parents who love attention from medical staff and will create symptoms via nefarious means do exist.
 
The official court document is released:
http://www.theblaze.com/stories/201...-state-of-massachusetts-apparently-thinks-so/

Imaboveitall,
We are siding with the parents because if they were wrong the. Why has the girl gotten much, much worse since taken off treatment for mitochondrial disorder?
Her sister also has the illness.
It was diagnosed by a reputable physician at Tufts who they have not let see the girl again even though they now said they would let her be seen by them.
Also the doctor that gave her the diagnosis of somataform disorder at Boston was doing a research study on it with a large grant of money. Isn't that a little biased?
Thirdly there are other cases of this hospital doing this. It is not the first.

You are correct that we don't have all the facts but a lot has been revealed on both sides.
Plus something interesting that was pointed out, people with mitochondrial disease have abnormal teeth very pointy. This child has that.
 
I'm confused, the link you posted took me to an article about schools sending out bmi letters not the court documents
 
I know more than a few kids with mito and something seems very "off" on this whole story.
Only the courts , docs , DCF and the parents know the true story everything else is purely speculation since all things medical are protected.
 
I just cannot fathom a reputable physician at Boston Children's staking his rep on this case without hard data to support his position, research or no.
His colleagues and superiors would be all over him, if this was just one weirdo doc behaving badly.
DCF does not do this without just cause. They err more on the side of allowing abusers to KEEP kids, by and large, due to sheer caseload volume, understaffed and overloaded caseworkers, and apathy.

She may have a form of mito, but the symptoms for which she was being treated may have been induced by the parent(s) and that was the alert.
 
All good points of view.

A question to anyone following this case.
Have the parents been charged legally in this case with neglect, endangerment or wrong doing of any kind?
 
Wait, that doesn't make sense.
How can they remove the child from her parents without finding fault (legally) with them?
This still doesn't make sense.:confused2:
 
There's nothing in the articles about what evidence/data was used to change her dx of mito.
SOMEthing started the docs at Boston Children's down this path. Something alerted them that this child MAY be misdiagnosed, and abused as well.
A doctor didn't just decide to dismiss a child's mito dx on a WHIM, even a self-promoting whim.

Likely there is DATA and EVIDENCE that police are withholding from the public, pending investigation.

If she is suffering from conversion syndrome her symptoms shall diminish when removed from her parents' influence and given therapy. If she does have mito, the clinical picture shall show that. She isn't in a a basement cell, she is on a pedi floor being assessed daily by MULTIPLE docs, nursing staff and other med personnel. With all the media attention her parents are seeking, you can bet the hospital is ALL OVER CYA and will be checking and rechecking this poor kid often and thoroughly.
 
She certainly could have a mitochondrial abnormality and a psychiatric one. Sometimes doctors find an abnormality on a test but it is not causing the symptoms the person has. It's also possible the abnormality is causing some mild symptoms but that most of her issues could not be attributed to the mitochondrial abnormality.

And of course the Boston Children Hospital doctors could be completely wrong, but I 'm guessing that there's a lot to this case that we are not aware of.
 
I do not have that much trust in BCH or any doctor/hospital. We've met many doctors that completely disagree on diagnosis and some with very big egos insisting they are right (and those doctors were wrong in their diagnosis of my older son with a CSF leak). I have refused to give my child medication and treatment when I disagreed with the doctors ... so I can see how this could happen. I've read the articles and watched the Dr. Phil show that they were on with their other daughters (one with mito). I find the situation the family is in despicable. It seems like conversion syndrome can be diagnosed on anyone when doctors do not know what the diagnosis is. I am so fortunate that Danny's GI clearly knows that doctors are not able to diagnose everything they see.
 
xmdmom I looked at the video but I'm not understanding why?
Other than being a view on Democrats, I didn't see a reason for it.

Maybe I missed......quite easy for me to do.:lol:
 
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He's a tv personality who in the video say's Obama's vision has a communist vision... um really? Anyhow, it's clear that he says things to get ratings and that makes me question him and his judgement.
 
"The court has since ordered a new plan to have Justina's former doctor, Mark Korson of Tufts Medical Center, treat her for "persistent and severe somatic symptom disorder," a condition that acknowledges psychiatric as well as physical illness."
 
I was just about to post this. So glad they reversed the decision & she is back with her parents like she should have been!
 

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