<p>I suspect there could be a huge lawsuit resulting from this–there would likely be already if it were my child. I’m sure there must be much more to this story–it doesn’t add up and the risk Boston took was too great otherwise.</p>
<p>I have had to quarterback my health, as well as both my
Kids. We did travel to LOTS of docs and had many consultations. They also both missed tons of school and each saw three psychologists. Their care was actually less aggressive than that for many other kids with stamina/metabolic health issues. It was a very tough time for our entire family. We had a very hard time over a decade getting answers and effective treatments. </p>
<p>This case sounds like a nightmare to so many of those involved. Parents are often the quarterbacks and advocates of complex, ill kids.</p>
<p>How can they use a psychiatric ward to keep this girl away from her parents?1 Was ten months inpatient treatment absolutely necessary for her health? If not and they are just essentially holding her there to keep her from here parents they are just as guilty as they are accusing the parents. They are giving inappropriate care, inpatient care, which I can’t imagine was necessary for TEN MONTHS!!! Worst case, worst case, there is a social welfare system that this girl should have been released into from the hospital while they waited for the judges ruling. </p>
<p>This entire case makes my blood run cold. That this singular hospital could have this much power. This is not an isolated case, there are more children that have been held for months. Did they also need months of in patient care or was this just an effort to keep the kids away from the parents? If separation was the goal there is a social welfare system. I think it’s a terrible alternative, but the idea of holding these kids in psychiatric wards is draconian.</p>
<p>Something is very, very wrong when everyone agrees that this child was extremely happy at school, enjoying close friendships with her peers, and yet she has somehow spent the last 10 months confined to a psychiatry ward. People who spend that amount of time in a psychiatric ward do not fit this profile.</p>
<p>When my son was treated for leukemia, a set of parents decided to withdraw their daughter from treatment. There was some press about it with a lot of quotes from the parents, and featuring them heavily. No comments from the children’s hospital or doctors. </p>
<p>I was there for a good part of the time all of this was happening and the mother has shared the girl’s notebook with me. A number of us parents knew what was happeing here, and what was written in the papers was woefully inadequate in terms of explaining the situation and some of it was outright wrong. Still upsets me when I think about this, because the little girl was taken OT prematurely, though later than the parents wanted due to the hospital/doctor intervention. Still she relapsed, and died, terribly, and possibly unnecessarily. She had ALL which has a decent long term remssion rate and her only high risk factor was her age, and that barely as she was 11 years old. Her parents felt that her chemo/treatment was worse than the disease. She did not have what I consider the more adverse reaction among the kids being treated. </p>
<p>So, it’s hard to say what is happening here. On the other hand, I do know of cases when social services were excessively heavy handed, and doctors high handed and inappropriate in their arrogance. I hope some resolution to this occurs soon.</p>
<p>so distressing…this young girl is now a victim of medical child abuse by the hospital, locking her in a psychiatric unit for 10 months is not the appropriate care either.</p>
<p>if the parents were involved in “medical child abuse” formerly Munchausen’s syndrome, it seems by managing it legally, and not trying to assess that any further, only polarized the situation. why not pull everyone together as was suggested in the first article and discuss the concerns, see how they respond, explore alternative treatment approaches, while still permitting the family some level of involvement. This poor young girl is likely so confused and traumatized by being ripped from her family and forced in a psychiatric unit.</p>
<p>I was slipping into kneejerk outrage mode from reading only the posts here, but then read the following in the first article, which suggests that there is a lot more going on here than simple overreaching by Children Hospital:
I don’t think anyone here is in a position to judge this situation</p>
<p>I don’t disagree that there may indeed be a lot more to this story. What makes me uncomfortable is that I think it’s very, very rare that ten months of inpatient psychiatric care is needed, the best course of action for a child. If this wasn’t absolutely necessary for this young girl medically then she’s being abused by the hospital. Holding someone unnecessarily in psychiatric care long term, especially a child in this manner can create a host of issues for the child. The hospital is using this extended medical treatment possibly to restrain the child from the parents. That’s wrong. We don’t do that here. We wouldn’t prescribe an unnecessary, potentially harmful drug to keep her away from her parents long term. This is equally wrong. If it’s necessary beyond her required hospital treatment to remain away from her parents while a judge sorts this out, there is a social welfare system. It’s a poor answer, but foster care where she’s not subject to medically unnecessary treatment (inpatient psychiatric care for ten months) is preferred to locking a child up. We don’t allow a hospital or doctor to give unnecessary care any more then we allow parents to harm a child with inappropriate care (which is the accusation, right?).</p>
<p>From my recollection of one of the articles, they are looking for some alternative treatment site for the girl but have not yet found something appropriate. I have no idea what that means, but it is alleged that they are looking.</p>
<p>Foster care for a sick kid is neither realistic nor a good idea since that system is overloaded and riddled with abuse. There are no good answers here and a lot of unanswered questions since none of us know what is really going on.</p>
<p>^^^Right. IIRC, they are looking for some facility or family that can provide her with the care she needs. Apparently they haven’t found it yet.</p>
<p>No, there’s nothing ideal anywhere about this for this young girl. I just see a whole lot of ‘wrong’ including the length of time to move through the justice system. The case is not isolated for Children’s, in nature or length of stay. I’d be very interested In learning how other specialty Children’s hospitals throughout the country compare on this difficult issue. How often do they remove children putting them in psychiatric care? Does this go on for months and months while the legal system grinds (since I question length of treatment is based on medical need)? Children’s is unique from your county hospital in treating high risk patients but it is by no means the only hospital of it’s kind. Only by comparing this issue to like hospitals can we put in context if reach of power abuses are at question.</p>
<p>^^^ Agree… Sorry, but the first article was so long that I only got through part of it without giving up. This ‘journalist’ only has access to one side of the story, because the hospital is refusing to talk (as they should, since it would be violating HIPAA). Two sides to the story.</p>
<p>Two sides to the story, sure – but 10 months in a locked psych ward for a kid who was doing well with peers and in school? Parents with kids who are deeply troubled have had difficulty getting any kind of in-patient treatment, and the push is to get kids out of in-patient treatment as fast as possible. </p>
<p>There have been enough other stories of families being treated very, very badly when a child has a little-understood disease. We had a case around here with a child who had brittle bone disease, and the parents were brought up on a bunch of child abuse charges. It was a terrible situation.</p>
<p>There is no insurer involved. The State of Massachusetts is footing the bill because she has been declared a ward of the state. If I were a Mass tax payer, I’d be questioning this. The article says normal rate for the psychiatric wing is $2,000 a DAY. Mass State rate is believed to be half that. Still, that means the state has paid about $300,000 to keep her in lock down.</p>
<p>Just because the state is paying for it doesn’t mean an insurer isn’t involved - it means the state is providing for enrollment in a health plan.</p>
<p>Whether patients receive health care is influenced by the health plan in which the patient is enrolled, and I am wondering why it doesn’t appear to be a consideration in such a case although it is in garden variety cases.</p>
<p>Public agencies should always have a policy to stand up and say this is what we did and this is why we did it. Instead they pass privacy regulations and claim we can not tell you what we did or why because we need to protect the patient or the taxpayers privacy.</p>
<p>But there’s HIPAA involved. The hospital CAN’T just say to the reporter from the Boston Globe, well, this is our side of the story. This young lady’s medical care is NOT your business to be splashed on the pages of the Boston Globe by her doctor / hospital. Sorry, to me this is a “reserve judgment til all the facts are on the table.”</p>