Mass takes custody of 15 yo b/c two hospitals disagreed on diagnosis

[Laurie4b]

Has anyone posted about this yet? The teenager was diagnosed with mitochondrial disease at Tuft's and yet when the parents took the her to Boston Children's Hospital with flu symptoms b/c the Tufts g.i. doctor had moved to BCH, BCH decided that she didn't have a mitochondrial disorder, but a mental disorder, and have kept her in their psych ward for 10 months after filing a medical neglect complaint against the parents, alleging that they were giving her unnecessary medical treatments for the mitochondrial disorder diagnosed at Tufts when what she really needed was mental health treatment at their hospital.

 

http://www.bostonglobe.com/lifestyle/health-wellness/2013/12/21/state-retains-custody-teen-limbo-children-hospital-for-months/5TGcy5X8IxQusdtXgRmXdK/story.html

 

I dunno, but it seems that medical neglect should not be a permissible charge when 2 hospitals disagree with each other and it should be left to the parent, not the hospital who currently is treating the child, to decide which diagnosis makes more sense to them. Seems like if the parents were wrong, that the teen should have been getting better by now after 10 months of in-patient treatment.

 

Adding to it is that the child is a CT resident and is in custody of Mass social services. The judge is *considering* allowing her to return to CT and allowing CT CPS to take over.

[sbgrace]

There was a thread here on this a while back.

People tended to think there had to be more to the issue for parents to lose custody if I recall.

 

I posted to it, because this is a big issues for mitochondrial disease. Mito symptoms can naturally waxe and wane. Mito has tons of variation in presentation in various people, even those sharing the same DNA mutations within a family. It is also notoriously tricky to dx. definitively in at least some cases, and an invasive/long term process to dx. even when it's more definitive.

 

As a parent of a child with a metabolic condition affecting mitochondrial function with no formal name at this point, articles like this scare me. I think they should alarm all parents. It could happen to anyone theoretically.

 

In that thread, I posted an article published about parental accusations like this being a known issue with mito kids. The article was not about this case, but general/published prior. I want to say it may have been published out of one of the hospitals involved in this one coincidentally, but it's been a while and I can't remember. I'll look for the thread.

 

 

[sbgrace]

Found it. The thread about the case was from November. http://forums.welltrainedmind.com/topic/495108-this-is-terrifying-teenager-held-in-hospital-when-parents-didnt-agree-with-diagnosis/

 

Here is the article, by a dr. from Tufts actually, about munchausens accusations in parents of those with mito.

http://www.mitoaction.org/blog/munchausens-proxy-accusations-mitochondrial-disease This really does happen. And this isn't the first family affected.

 

This is my post to that thread. I'm going to repost my reply, because it's got detail specific to this case. I didn't read the article linked in this thread, because the first one made me feel sick for the family. So I forgot the details, like she's been dx'd by Dr. Korson--a leading expert in the field and very respected. And the accusations against the parents are bizarre. Everything that has happened with that girl mentioned in the article linked in the previous thread lines up perfectly with mitochondrial presentation. So the details are even more alarming.

I think it's terrifying. Mitochondrial disease is tricky (diagnostically and symptomatically). Symptoms can indeed come and go. There aren't perfect or easy tests. The Dr. Korson is a recognized leader in the field and he diagnosed her apparently. He knows what he's doing. I'd venture the team doesn't know mito.

 

It makes perfect sense she would decline to need hospitalized during illness or other body stress and then improve. This is a hallmark of the condition. Our genetics doctor always asks if we've been hospitalized in 6 months prior to seeing him. He has many patients who routinely go in for fluids (or more) whenever they get sick with things that, for a normal person, would be mild illness.  My son is not one of those. But it's not even close to a red flag.

 

The standard treatment for mitochondrial disease is a cocktail of medications. All the cocktail are low risk meds, most actually available in your local drugstore (ie coq10, riboflavin/b2, biotin perhaps). One my son takes is a prescription, Carnitine. But even that you can buy in certain forms without a prescription.

 

Here is an article on the MItoAction website by a doctor talking about the very real risk that parents are accused of Munchausen when their kids have mitochondrial disorder. You can see how this could be happening to this family, true? http://www.mitoactio...ondrial-disease

Quote

Because children with Mitochondrial Disease present with different and often changing symptoms, including fluctuating or "impossible" gastrointestinal issues, Munchausen's by proxy is unfortunately the mistaken conclusion drawn by health care professionals who have little or no understanding of Mitochondrial Disease.

 

 

 

So, with my background, reading this story does make sense. I think we may be getting an accurate representation in this article, it has happened to others, and it is terrifying.

 

 

 

 

 

[Mrs Mungo]

Any parent who has a child with any serious, but potentially dubious diagnosis should be worried. My son's specialists routinely think I am under-reacting to things. But, when I had to take him to the ER last week, they clearly thought I was being unreasonably over-cautious. There is just no winning.

[Laurie4b]

sbgrace, the article link you posted is truly scary. I was especially struck by the fact that doctors consider a parent who is extremely knowledgeable about the disease and uses medical terminology to be exhibiting one of the red flags of Munchausen's by proxy. Wouldn't any intelligent parent with a child with a medical condition become educated on their child's disease and be able to use medical terms related to the disease that other people wouldn't know?

 

I've been asked before if I have a medical background because of the way that I interact with doctors. No, but I listen and learn about my own condition.

[KungFuPanda]

sbgrace, the article link you posted is truly scary. I was especially struck by the fact that doctors consider a parent who is extremely knowledgeable about the disease and uses medical terminology to be exhibiting one of the red flags of Munchausen's by proxy. Wouldn't any intelligent parent with a child with a medical condition become educated on their child's disease and be able to use medical terms related to the disease that other people wouldn't know?

 

I've been asked before if I have a medical background because of the way that I interact with doctors. No, but I listen and learn about my own condition.

You'd think that with the Internet, they'd have to drop that particular red flag off their checklist. Anyone can look anything up easily.

[Laurie4b]

You'd think that with the Internet, they'd have to drop that particular red flag off their checklist. Anyone can look anything up easily.

 

Well, what is scary to me is that good parenting---normal parenting--by intelligent people is considered a "red flag."  I understand if someone is not well-educated that they might not know. I understand that other people simply prefer NOT to know and to let the physician make all the decisions. But I think it is a totally normal thing to learn in detail about your child's condition.

[Mary in VA]

I didn't read the link, but I've been following it in the news. The even crazier thing is Justina's older sister has the disease too!  You would think when nationally recognized specialists in the field say she has a disease that appears to run in her family that they judge would believe them! This an absolutely horrifying case.  The family is in my prayers.

[ElaineJ]

I don't understand the logic behind the court order. How could parents purposely induce somatoform disorder? Is this something that has been observed in other verified cases? Do they just mean that the parents are telling the teen over and over every day that she has mitochondrial disease so now she believes it erroneously and her body is creating symptoms to correspond to that belief? Wouldn't the other hospital be complicit in the abuse in that case, as they were also telling the teen she had the disease and actually treating her for it? And then what would they be doing in the course of the last 10 months of psychiatric treatment......trying to convince her that she is really healthy and that her family somehow needed her to be sick?

Elaine

[Laurie4b]

I didn't read the link, but I've been following it in the news. The even crazier thing is Justina's older sister has the disease too!  You would think when nationally recognized specialists in the field say she has a disease that appears to run in her family that they judge would believe them! This an absolutely horrifying case.  The family is in my prayers.

 

Do you have any links to that? Do you mean the older sister is no longer a minor and has the disease? My word. I can't imagine any worse form of medical abuse than, if a person has a rare disorder, to confine them to a psych ward for 10 months and limit contact with their family.

 

When I think about it, ulcers used to be considered the result of a mental problem--too much anxiety, and the doctor who insisted they were caused by bacteria was thought to be a quack.

 

My sister and I were both lactose intolerant. Back when we had it, there was  little recognition of it outside of African Americans.  When my sister was in college, she went to the doctor with symptoms, had an upper GI done, and was then told to go to a psychiatrist. I read an article in Vogue magazine about it, told her, we both stopped drinking milk and Voila! No more GI symptoms.

 

So a diagnosis of  "mental illness" of some type when there are physical symptoms can be another way of saying, "I have not succeeded in finding out what is wrong."  (I am not denying that stress, anxiety, etc. can affect the body at all. Just that sometimes that can be a default diagnosis that is later found to be wrong when research progresses.)

[Laurie4b]

sbgrace: It looks like Dr. Flores, one of the experts in the mitoaction website, moved to Boston Children's Hospital from Tufts. They followed him there and then this happened. Did you know about that? (An article mentioned that their GI doc had moved from Tufts to Boston Children's. I googled Dr. Flores and he is now at Boston Children's Hospital.

 

 

[Word Nerd]

"Korson asked repeatedly for a roundtable meeting bringing together all of Justina’s key doctors and others who knew her best, as a way to devise a unified plan to present to her parents. This approach is widely advocated by child abuse specialists across the nation in highly contentious cases like this one. However, Korson’s requests went unanswered."

 

Why in the world would anyone who claims to have her best interest at heart refuse to do this?

[Brilliant]

If you have Fox News Channel - Megyn Kelly has been hitting this story hard for the last few days.  She's had the parents on for interviews (purposely breaking their gag order; at this point I guess they have nothing to lose).  The parents seem like reasonable people and I can't believe they have lost their daughter for so long over this disagreement. I think it's government gone crazy. 

[chiguirre]

I wonder if they're making her parents pay for 10 months of inpatient psychiatric care or if the state of Massachusetts is footing the bill?

[Ottakee]

I haven't really followed this story but things are often more complicated than they seem.  My girls both have mitochondrial disorder disorders----one has 2 different ones and the other has 3 different ones.  To compound the issues one of the mitochondrial disorders they have include mental health issues as a symptom..........so the child might have a mito issue and mental health issue.

[TechWife]

This caught my eye: 

 

"The battle over Justina's future was one of five cases involving Children's in the last 18 months where a disputed diagnosis led to parents losing custody or begin threatened with that extreme step." 

 

How often does this happen in other research hospitals around the country? Five cases in 18 months seems extreme to me. 

 

 

 

 

 

[Mary in VA]

Do you have any links to that? Do you mean the older sister is no longer a minor and has the disease? My word. I can't imagine any worse form of medical abuse than, if a person has a rare disorder, to confine them to a psych ward for 10 months and limit contact with their family.

 

http://www.nydailynews.com/news/national/parents-accuse-mass-hospital-locking-daughter-psych-ward-article-1.1609998  This link says her sister has the disease, but doesn't say how old she is.  

 

 

 

[AmyontheFarm]

IF her parents were the reason she was sick, then why isn't she better after being removed from them for this long?  Why is she actually worse???

 

Wouldn't logic state that if the parents were causing this, she should be getting better by now?

[Paige]

Why didn't they just transfer her and get a couple of other independent physicians to evaluate her with 3rd and 4th opinions? I think this is horrible. It makes you nervous to take your child to the hospital.

[Laurie4b]

I wonder if they're making her parents pay for 10 months of inpatient psychiatric care or if the state of Massachusetts is footing the bill?

 

I don't know if MA healthcare makes a difference, but in most states, parents with any income pay fees for foster care. It's kind of a double whammy if it's an injustice---they take your kid and you have to foot the bill as well as pay an attorney.

[laundrycrisis]

Boston Children's also took custody of Elizabeth Wray, a teen with PANDAS disorder, last year.   It appears this might be a pattern with this hospital. 

[mommymilkies]

Terrifying.  My 3rd child had crazy symptoms-terrible stomach pain that landed her in the ER several times, lack of growth for three years, vomiting almost nightly, behavioral problems, etc.  No doctors listened to us.  They thought we were nuts.  Finally we found a doctor who listened, really looked at her and decided something was off and ordered a bone growth scan and about 100 blood tests.  They were sure she was just anemic and I was overreacting.  Nope.  Her tsh was 617 and her bone growth scan was that of a 3 yo, not 6 yo.  We were immediately referred to a top pediatric endocrinologist who was amazed she wasn't in a coma.  I can't even imagine what would have happened if nobody listened to us after years of appointments or if someone thought it was Munchausens.  I know that that exists, but it makes me so angry when doctors don't listen to parents. 

[Lisbeth]

I think there should be charges of medical malpractice, kidnapping, fraud, false imprisonment, the works. I am extremely tired of this kind of heavy handed mess.

IE., this family should come away owning the hospital and the state. There needs to be jail time and big payments for damages.

[Anne in CA]

This caught my eye: 

 

"The battle over Justina's future was one of five cases involving Children's in the last 18 months where a disputed diagnosis led to parents losing custody or begin threatened with that extreme step." 

 

How often does this happen in other research hospitals around the country? Five cases in 18 months seems extreme to me. 

I have a friend who had a dd with Downs. Many unusual things about her case meant that doctors wanted to use her for research. Whenever a doctor did not get his/her way the first thing they would threaten to do was remove her from his custody. He is a widower with no family support. He was always at their mercy. This happens ALL THE TIME. All the people on the board with healthy children do not get what it is like to be at the mercy of the medical system. Probably there are hospital politics between the two hospitals that are the origin of this case. I doubt very much that the people in charge of the hospital care at all about the girl. I say that based on very sad personal experience.

[chiguirre]

I don't know if MA healthcare makes a difference, but in most states, parents with any income pay fees for foster care. It's kind of a double whammy if it's an injustice---they take your kid and you have to foot the bill as well as pay an attorney.

Paying child support would be galling, but being stuck with a 10 month inpatient psych bill would be bankrupting. I sincerely hope the parents aren't being stuck with the bill. I also hope the girl's health isn't adversely affected because (I presume) they aren't treating her "fictional" mitochondrial disorder. And, if she's physically healthy why can't they place her in a group home? This case stinks all around and I hope BCH has to make financial amends if they're at fault.

 

This reminds me of the case of the brain dead woman who was kept on life support against her living will and her family's wishes because she was pregnant. The Texas hospital at the root of that miscarriage of justice said they planned to bill the widower for 2 months of life support even though they were at fault.

[RanchGirl]

I have so many questions about this case.  It seems so egregious.  I cannot fathom how Boston Children's, the Child Protective Workers AND the State have allowed this to go on for so long?!?  If she is not a danger to herself, she shouldn't be in a psych ward for one day, much less one year.  If the parents are truly unfit (and I have seen no evidence of this), she should be with a relative or if none is available, a foster family as a last resort.  

 

Furthermore, there is no way in the United States that someone should lose their child for following the advice of a reputable doctor doesn't make one unfit in my book, even if another medical professional has a differing opinion.  Disagreeing with a doctor is not child abuse.  It is a parent's right and responsibility to pursue the best option for their child instead of blindly following any old idiot they run across.

 

Finally, who issued the gag order???  How can that be legal?  The court takes away their right to their child and their right to tell anyone about it??

 

This poor poor child, ice skating a year ago and now wheelchair bound after a year of forced treatment at Boston Children's.  Clearly she was doing better under the care of her parents.  It's truly shocking that this can happen in the USA.

[Guest submarines]

I started the old thread about it last year. I still occasionally google for any  news on the case. It is horrifying. I'm very fortunate that my children don't have any serious health issues, but even then, as a homeschooler, I feel under scrutiny, even by our family doctor. The amount of judgement from her is astounding, even if right now it is all seemingly respectful and phrased in an understanding, compassionate manner. It took me awhile to realize that every question asked is an assessment of our homelife and education.

 

 

[Joker]

So, when I'm searching (I've been following it for a while as well) it seems she was moved to a different location for observation as a first step for them possibly allowing her back home. Is this right?

 

I'm shocked by the whole thing and disgusted at how this hospital has been able to do this before. It's frightening.

[Laurie]

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[Jean in Newcastle]

Note to self:  never ever take my kids to Boston Children's Hospital.

[RanchGirl]

great googly moogly, they are moving her from the psych ward to foster care.  What in the he** is going on in Massachusetts?  I am  physically ill thinking of this poor 15 year old girl stolen from her family. 

[Laurie4b]

I have so many questions about this case.  It seems so egregious.  I cannot fathom how Boston Children's, the Child Protective Workers AND the State have allowed this to go on for so long?!?  If she is not a danger to herself, she shouldn't be in a psych ward for one day, much less one year.  If the parents are truly unfit (and I have seen no evidence of this), she should be with a relative or if none is available, a foster family as a last resort.  

 

Furthermore, there is no way in the United States that someone should lose their child for following the advice of a reputable doctor doesn't make one unfit in my book, even if another medical professional has a differing opinion.  Disagreeing with a doctor is not child abuse.  It is a parent's right and responsibility to pursue the best option for their child instead of blindly following any old idiot they run across.

 

Finally, who issued the gag order???  How can that be legal?  The court takes away their right to their child and their right to tell anyone about it??

 

This poor poor child, ice skating a year ago and now wheelchair bound after a year of forced treatment at Boston Children's.  Clearly she was doing better under the care of her parents.  It's truly shocking that this can happen in the USA.

 

Gag orders are pretty much standard operating procedure in these cases. The stated reason will be to protect the minor's privacy.

[laundrycrisis]

Another Justina ?  (this would make 3)

 

http://www.redmassgroup.com/diary/17822/another-justina-pittsburgh-mom-moves-to-mass-and-her-son-is-taken-by-dcf-childrens-hosptia

[gardenmom5]

you know what this makes me think of, since the hospital is now claiming it's all in her head - it's like the current vogue of those claiming you can live on air and not have to eat food or drink anything.  (yeah, there are some. who think that.)

[Matryoshka]

WTH is going on here?  This is the same wonderful DCF system that "lost" a kid recently - one who was in their system in an actual abusive situation (by parent, kid was not taken).  They didn't bother to follow up, and the kid was missing presumed dead for six months without their noticing.  They recently said they knew where all their other charges were, but it just came out after a review that another kid is missing.

 

But they have plenty of time and energy to take sick kids from fit parents??!!  Why would a kid with kidney failure need to be in a locked psych ward??  Weirdly, I heard nothing about Justine on the local news till the past month.  I first heard about it here.  It's finally being reported on.

 

There are lots of hearings and the head of DCF may be fired over the missing kid, but I think someone should point out that's only one half of the abuses going on here...

[Word Nerd]

At first I thought there might be good news on the horizon. But after reading this Boston Globe story Feb. 28, I don't have the impression the parents are any closer to getting her back; Massachusetts just wants to wash its hands of the case.

 

[mommymilkies]

An article said this was the 5th such case in 18 months.  http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

If I were those parents, as soon as I got custody back, I would sue the pants off everyone involved and move to another country.  This is completely ridiculous.  

[La Texican]

I try to think these stories are not real. It's too scary to be real. All the things that can go wrong raising children. What would be the thing to do in this story? Is this the kind of thing they need to go in front of Congress and tell what's happening? Is this a big enough thing to go to congress for?

[Laurie4b]

An article said this was the 5th such case in 18 months.  http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

If I were those parents, as soon as I got custody back, I would sue the pants off everyone involved and move to another country.  This is completely ridiculous.  

 

Sounds like a class action suit; however, in most states, everyone involved would have immunity from prosecution over the child protective services piece of it. The parents would sue for malpractice, though. What I am guessing will be a consequence is the bottom line of BCH. I sure wouldn't take my kid there.

[laundrycrisis]

I think they are real.  Our system makes doctors into gods, and state agencies their henchmen.