Have you heard about the Pelletier case?

[123LuckyMom]

I just heard about this case through Facebook. Apparently a family took their teenage daughter, who had been diagnosed with mitochondrial disease and treated at Tufts Medical Center, to Boston Children's Hospital on the advice of her Tufts doctor. A gastroenterologist who had previously treated the girl had transferred to that hospital, so her parents took her there specifically to see that doctor. The staff at Children's determined that she was a psychiatric patient, that she did not have mitochondrial disease, and they wrested custody away from the family accusing them of medical abuse for having treated her for mitochondrial disease. They refused to consult with the Tufts doctor. The girl never got to see the gastroenterologist. Her family were not allowed to transfer her back to Tufts, get second opinions, or be involved in her care. Their visitation was also limited to once a week. The girl did not get substantially better over her year on a locked psychiatric unit. The courts will determine where she will go next on Friday.

There's a lot to this case. You can read a good article here:
http://www.bostonglobe.com/metro/201...xZI/story.html

I find this terrifying! There need to be some laws protecting people from these medical establishments and the willingness of the state to uphold the determination of one hospital over and above the wishes of the family and the educated opinions of other medical professionals. Nobody should be able to take your children away because you are a pushy mom advocating fiercely for your child's care, which is what seems like has happened in this and several other cases mentioned in the article (one of which was a case of PANDAS.)

[KpbS]

Yes, it is so super scary and just awful! The latest update I heard was that there are 12 Mass state reps backing a resolution to release her!

[123LuckyMom]

Yes, it is so super scary and just awful! The latest update I heard was that there are 12 Mass state reps backing a resolution to release her!

Well that's good news! Are they trying to get her released to her family or still to a facility? Will the parents still be forbidden from seeking to treat her mitochondrial disease?

[123LuckyMom]

I just found this article from 6 hours ago

http://www.bostonglobe.com/metro/201...9eN/story.html

The mother fainted when the courts determined the girl be placed into a facility with a foster care component even farther away from her CT home. It seems like the ones defending this family are conservative groups like the Christian Coalition. The hypocrisy is astounding to me! Where were they when that poor, dead woman in Texas was being medically assaulted by that hospital in defiance of her own and her family's wishes AND the medical best interests of her unborn child? I guess when a fetus is involved all bets are off. At least they seem to be on the right side of this case, unless I'm misunderstanding something.

[dogmom]

I will point out that the only people talking to the media is the family, the hospital cannot talk details. The GI specialist was someone the family brought her to WITH the mitochondrial DX. He was treating her GI issues. When she went to Children's Hospital several disciplines saw her and reassessed her DX. For a YEAR the judge has looked at the facts and overcome the bias for sending kids back to families.

I'm not saying the hospital or state is always correct. But when people like Glen Beck start championing your cause I wonder. Read some of the comments on these sites on the families side they think that the state makes up child abuse charges to persecute Christians, that child abuse stats are inflated. Oh, and the hospital doing it for the insurance money. Because inpatient child psych is so lucrative!

[TwinFoxes]

I will point out that the only people taking to the media is the family, the hospital cannot talk details. The GI specialist was someone the family brought her to WITH the mitochondrial DX. He was treating her GI issues. When she went to Children's Hospital several disciplines saw her and reassessed her DX. For a YEAR the judge has looked at the facts and overcome the bias for sending kids back to families.

I'm not saying the hospital or state is always correct. But when people like Glen Beck start championing your cause I wonder. Read some of the comments on these sites on the families side they think that the state makes up child abuse charges to persecute Christians, that child abuse stats are inflated. Oh, and the hospital doing it for the insurance money. Because inpatient child psych is so lucrative!

Well, I don't think the family can be blamed for who's championing their cause, or the crackpot comments of their "supporters" (ie, the internet). At this point they'll probably hook up with with just about anyone who will help them get their kid back.

I've never heard of this case before, but from reading the Boston Globe article, it looks like the very first doctor they saw at Children's thought "medical child abuse" and then brought in a psychiatrist, who had co-authored a paper on a new diagnoses of illnesses cause by psychiatric problems. It really does remind me of cases from the 80s where police went to classes about ritual child abuse, and lo and behold, found ritual child abuse in their community. (When it turns out that none of it had happened). It's not like they came up with the mitochondrial diagnoses, an expert in the field did. And their elder daughter has it. And the doctors at Children's didn't talk to their doctor at Tufts about his thoughts on the case (according to the doctor, not the parents), which just seems crazy. A flag for the Children's doctor was her procedure to put the "button" in her stomach to help her bowel movements. He thought it was extreme. But the doctor at Tufts had first performed a test that confirmed that her bowels weren't working properly, which the Children's doctor didn't know, because he didn't consult.

It seems like a big jump to put her in a locked psych ward, and now in a psych facility away from her family. And she's not getting better apparently if she's in a wheelchair now.

I'm usually pretty skeptical about stories like this. But this seems really extreme to me.

[dogmom]

It's exactly the extremeness of the situation that if I randomly had to choose who the child is safest with it's the state/hospital. People think it's just one or two doctors that can do this. In a case that is this high profile that has gone on for so long, there are a myriad of people involved in the hospital (ethics, lawyers, the child abuse team). It would be MUCH easier to Children's to just send the girl back to Tufts. One of the issues that have persuaded the judge is that the girl does better physically when the family isn't around. She also will have her own court appointed attorney, not from the hospital, to represent her interests. I don't have much pediatric experience, but I have had family members dragging their elderly parents through different doctors then signing them out AMA, doing things that are not in their best interest. Unless it is clear cut abuse, we just let them go.

I think comparing someone who has expertise in a field, which can have diagnostic bias, to social workers and cops in the field that went to some half-baked weekend training class about child abuse with no baseline understanding of the developmental difference between a 2-3 or 5 you is comparing apples to oranges. I'm not saying bad decisions can't be made in both situations, but they are completely different situations. As far as the extreme of locked psych wards, pretty much all wards are locked, because insurance won't pay for them if they aren't. (If you don't have to be locked up you must not be that sick, so you don't have to be inpatient. Non-locked wards all by disappeared except for private pay in the 90's.)

Of course the irony of the situation is everyone in my state is still screaming about a 5 yo boy that is missing and presumed dead that was from a family being monitored by state child care services, which had their budge cut 20% during the economic downturn. Everyone is "how could they leave this boy with the family!' Of course they weren't a nice middle class family from CT.

She was going to be released to a foster agency, getting out of the hospital, but the placement later declined since advocates starting saying right away they were going to protest at these places.

[westwoodmom04]

I think the fact that the court system continues to keep the girl in protective custody away from her parents strongly suggests that there is evidence of abuse. Very sad story, but I think what her parents are telling the press is less than complete.

[boolady]

I think it's very difficult to judge the true situation when the hospital is required to keep things confidential. It also raises concerns to me that Boston Children's is not the first doctor or institution to be concerned about the parents' actions. None of us like to think about parents purposefully harming their children but we also know that it happens every single day. I don't know what the truth is; I'm sure there's far, far more we don't know about this situation than we do.

[chlobo]

Here is an article from Dec that talks about a number of families who were accused of medical neglect by Boston's Children's hospital. Very interesting. Obviously, you have to consider the source but interesting and scary none the less.

http://www.theblaze.com/stories/2013...amilies-again/