Update on Justina Pelletier’s Health Status

Rob Wipond
24
193

The Boston Globe provides an update on the health status of Justina Pelletier, and explores the ongoing political sensitivity about her situation amongst all involved in her case. The 16-year-old Pelletier is currently being treated in hospital for serious physical problems. She became nationally prominent in the midst of a long struggle between her parents and the state child welfare agency, during which Pelletier was forcibly held in a psychiatric hospital away from her parents.

A difficult return to hospital for Justina Pelletier (Boston Globe, December 7, 2014)

24 COMMENTS

  1. I’ve followed the Justina Pelletier case as it unfolded, and have not ventured into commenting online before because the outcry has been so one-sided. There is something that bothers me about this case, and that is why the parents wouldn’t be more open minded about exploring the possible psychological underpinnings of her illness — for the one very simple reason in that it doesn’t involve feeding tubes and surgical interventions. I have been fortunate to observe “schizophrenia” close-up. Now THERE’s a diagnosis just like mitochrondrial disease in that many people find both “diseases” spurious. Both have physical symptoms that tempt people to assume that’s it’s all medical. The Pelletiers seem like a very nice family, so it is comforting to assume that they are right about the child and the big, bad psychiatric department is wrong, but really, isn’t this the same battle that we (those of us who believe that schizophrenia is not a brain disease) fight with parents who believe in biomedical model of the “illness?” If this were schizophrenia, the Pelletiers would be firmly in the camp of biochemical treatments and might want nothing to do with the implication that there may be psychosocial causes for their daughter’s distress. Why not be open minded enough to explore all options when your daughter’s health is at stake?

      • There are no psychological underpinnings to being constipated for days and then having to spend all day on the toilet. There are no psychological underpinnings for severe and persistent narcolepsy. There are no psychological underpinnings to seizures, intestinal bleeding, vertigo, etc.

        And considering what psychiatric treatment is and the horrible catastrophe of harm it is causing (as documented by the book that birthed this website), the parents did the safe and reasonable thing by not humoring the “doctors” and exploring “psychiatric” causes, which certainly would have led to her being put on cocktails of psychiatric drugs.

        • I disagree about a blanket statement that there are no psychological explanations for constipation or severe and persistent narcolepsy. I also question whether Justina was put on a cocktail of psychiatric drugs because it would seem strange to me that she would be put on drugs if the hospital was saying her problems were psychological. As far as I’m aware, she hasn’t been dlagnosed with a mental illness –the family’s been told her problems are psychological and are probably related to how the parents are handling her multiple heath problems, whatever it may be. I’m just guessing here.

          • Here’s one example. How about your child going blind? I once met a very nice but highly nervous mother of an only child. The family had just moved continents (which is always upsetting no matter how hard one may try to make it otherwise). She confided in me after the child had been in school a few weeks that before they moved he had woken up one day and was blind. He stayed that way for about a week. I think they now call it “conversion syndrome,” which is new speak for the old diagnosis of “hysteria.” The mother was so convinced that her eight year old was falling behind the school system back home that the family moved back home in less than a year. An eight year old, no less!

          • I don’t know about drugs but what’s the point of keeping a kid in a psych ward who doesn’t want to be there and do what? Forcing talk therapy one her?
            She didn’t get any better there (and some say she got much worse) so I think that case is closed.

      • I agree. It is very possible that what this family needed was support and education about better managing their daughter’s problems. Severing parental rights seems like an extreme move. On the other hand, we have only the family’s side of the story on this. The hospital can’t detail the reasons for their action due to legal prohibitions, so it is hard to say whether they had rationale that others would consider reasonable or not. It should be noted that three separate courts with three separate judges agreed with the removal of custody from the family. There definitely must have been some smoke even if there was not actually a fire.

        I don’t find the diagnosis of mitochondrial disease spurious at all–just difficult to confirm. I remember reading that in this case, the very basic intestinal biopsy done to confirm the diagnosis was skipped in both daughters (older one also diagnosed). This opened the door to questions about the legitimacy of the diagnosis and probably compounded the problem (of note, Dr. Korson was removed from his position at Tufts, although it’s not clear that this case had anything to do with that). It bothered me that this became the fight–whether or not she had the right mito diagnosis. Accurate diagnosis and parental mismanagement are not mutually exclusive. Both could have been true in this case and no one seemed to want to address this.

        • 1. “It should be noted that three separate courts with three separate judges agreed with the removal of custody from the family. There definitely must have been some smoke even if there was not actually a fire.”
          Yeah, that is what the Pelletiers’ will have to deal with for the rest of their lives: “but maybe they abused their kids afterall…”. I think you’re forgetting how easy it is to get a judge to rubber-stamp anything as soon as you’re a mental case. And Justina’s parents and she herself were all declared so.
          Usually when there’s medical child abuse there is one parent who is has a problem, not a whole family involved.
          2. “It bothered me that this became the fight–whether or not she had the right mito diagnosis.”
          If her diagnosis was wrong that’s on the doctors not the parents.

          • You appear to be absolutely unwilling to even consider the fact that parents may not be the victims, but the victimizers (I am making no accusations in this case, just speaking in general terms). Your comments all presume innocence, which is not actually demonstrated by the facts in the public domain, just like the facts we have in this case don’t prove guilt. However, it is that very unwillingness to even consider that parents may be guilty, intentional or otherwise, of putting their children at risk of great harm that is so dangerous for vulnerable children.

            In this specific case, do you ever worry that you may be advocating for Justina to be in a situation that could be medically dangerous for her? If that possibility has never crossed your mind, then you can’t truly claim to be advocating for Justina. If the goal is the best outcome for this child, then all possibilities must be considered–not just the one that best suits a particular ideological position.

          • Simply because it does not make any sense given the facts of the case.
            First, in cases of medical child abuse it is usually one of the parents who poisons or otherwise makes a child sick and tells people around him/her about the imaginary symptoms. In this case you have a whole family: both parents, the kid in question and her siblings in one front. Sorry, but it’s hard for me to believe they all have “Munchhausen’s”.
            Secondly, Justina has been treated before by the people in Tufts and if there was some problem they should have noticed it and not performed all the invasive procedures. If they were indeed unnecessary it’s on the doctors, not on parents.
            Thirdly, if the medical problems of the kid were all in her head after 16 months away from the family she should have gotten considerably better. That is clearly not the case, in fact they had consult with the previous doctor since she got worse while under psych “care”.
            Not mentioning that there were some considerable conflicts of interest for doctors doing the diagnosis.

    • Mitochondrial disease is not one disease but a group of conditions which arise from mutations in genes affecting mitochondrial function:
      https://en.wikipedia.org/wiki/Mitochondrial_disease
      There is no cure, the treatment is only symptomatic and slowing down the progression.
      As far as I know another of Pelletier’s daughters has similar problems but I don’t know if they managed to identify the mutation(s) responsible. Mitochondrial diseases are real and can be measured in various way in contrast to “it’s all in your head” somatoform bs.

  2. And of course the DFC/BCH supporters are coming out in droves now to condemn the parents, something they can only do because of their denial that there is anything physically wrong with Justina. Even though she’s in the hospital now, there’s no reason to think she’s doing any worse than she was at bader 5. That was the whole outrage and what drove the Pelletiers to the extremes: the fact that they saw their doctor sick and dying and the psychiatrists were just shrugging it off as imaginary instead of sending her to a legitimate part of the hospital for proper treatment, which she is receiving now.

    And I cant get that picture out of my head of her zonked out at bader five, so obviously on a high dose of neuroleptics. Her wax-like face with no expression… how this is not considered child abuse, just tortures me on a daily basis. Justina was upset that she couldn’t go home, so they forced her to take brain damaging drugs to chemically lobotomize her…. they do it every day, all across the country… and nobody is stopping them.

  3. I’m a parent of a child with a rare disease and also work in the patient advocacy field, so my take on this is a bit different. I think the response to Rossa Forbes comment pretty much sums up her point. It is impossible to have productive online discussion on this issue because the ‘parent’s rights’ crowd is totally unwilling to accept that there could be any other legitimate position on this than the one they have decided to take–which is very often political in nature and has little or nothing to do with the welfare of the child involved.

    I do know, based on personal involvement in a number of these cases, that rare disorders provide fertile ground for parents who are may have some parenting or psychological issues themselves to take advantage of. This is especially true in cases like my daughter’s illness and mitochrondrial disorders that are difficult to diagnose and often rely on subjective criteria. Those of us in this field are very concerned about this growing problem–both because parents with difficult to diagnose children are more likely to be unfairly subjected to suspicion and because there are problem parents out there who take advantage of the gray areas in diagnosis to garner attention for themselves at their children’s expense.

    It is disturbing in this case that so many lay people felt comfortable jumping in to the debate, seemingly unconcerned about the fact that they might be wrong and their vocal advocacy on either side of the issue might be causing further injury to this child. I have no idea if the Pelletier’s are harming their child or are victims of an overly enthusiastic child welfare agency. Neither do any of the commenters on this thread. It is of note, though, that she is back in the hospital after being with her parents, and her doctor from Tufts has been ‘removed’ from his position. These facts alone warrant at least some scrutiny and it is a relief that the family has moved her to CHOP for further evaluation.

    In my experience, these issues are rarely black and white. It is very possible that both things are true–Justina has a mitochondrial disorder AND her parents are not handling it appropriately. This is one reason for the name change to ‘medical child abuse’ vs Munchausen’s by Proxy. You can be abusing your child while falling short of intentionally or actively causing them harm. One example–we have parents in our group who insist on dramatizing their child’s illness (talking about need for transplant, early death, etc) with no regard for how a young child may interpret these attention-garnering comments. Sometimes this is garden variety ‘drama mama’ stuff, but sometimes it is significantly more pathological. Children are not equipped to process this sort of unnecessarily frightening information and may not have the verbal skills to talk about it. Often the first signs are physical–the child develops chronic inexplicable pain, sleep issues, strange neurological problems, GI problems (contrary to an earlier post, chronic GI problems are very often associated with psychological illness) or other symptoms related to stress. Sadly, troubled parents often use the escalating health concerns that they (possibly unintentionally) created to double down and try to get attention for the new symptoms, too.

    It happens. It’s a real thing that my colleagues and I, including some in the mitochondrial disease community, face often. Pretending parents always have their children’s best interest at heart so their rights should trump those of the child is absurd–and dangerous. People who work with rare diseases see it more than you might want to believe and we struggle to know what to do about it. Closing your eyes and pretending it doesn’t exist is not an option.

    Ideally, recognizing the signs and intervening early in a way that keeps the family together is optimal. Hard to do when there are knee jerk reactions on both sides, though.

    • I can assure you that my opinions on this and all matters are far from knee-jerk. I have put countless hours of thought and research into my opinions. Being so heavily damaged from psychiatric drugs as a child have made me a disabled adult who suffers from serious and sometimes violent involuntary movements. I haven’t left this house in several years and pretty much all of my time is devoted toward reading and thinking and a perspective of being damaged by these drugs that I’m sure most people can not even begin to understand. Psychiatric treatment is NOT benign. The parents did the right thing by refusing to comply with them. These drugs they would put her on cause permanent brain damage on top of the fact that they’ve never been show to actually make anybody better over the long term anyway. No scientifically discovered benefit on top of serious life destroying proven harms. A person would have to be unreasonable to know the facts and still conclude that forcing kids onto psychiatric drugs can ever be in their best interests.

  4. Rossa-

    I’m sure you can safely say about the parents shift from ignorance to experience, What a way to learn your lesson about psychiatry…. And certainly they would have received lifetimes worth of motivation for thinking about the abuse of authority, and let’s hope they aren’t taken advantage of again. As you pointed out, it’s been a good long time in the news with Justina, and having more explicit final analyses would be good for many reasons. Not least of which would be making the parents’ process of attitude change and coping strategies explicit. Did you have something like that in mind?

  5. I was thinking that you recognized the possible benefit of hearing what the Peletiers assumed at the outset, what they realized later, and any change of attitude. My initial reaction seems like it had been similar to yours, but I haven’t followed the case as closely or articulated my thoughts as much as you. But your first comment read like a reconsideration of very similar reactions of my own. And to take it further, since it seems about time for examining the parental POV, I mentioned the obvious…that they got their rude awakening. Meanwhile, the way I read the rest of your comments brings up the point of how else than badly can any interaction with medical authorities go, if we blindly obey their commands. I think it’s naive at best to look to mainstream behavioral careproviders to provide care. As Katie Higgins wrote, the fact of Justina’s humanity became incidental, and no one else on staff listened to anyone but doctors, and it is always like that.

  6. As someone who previously worked for many years with people suffering Anorexia nervosa, just looking at photos of Justina, she doesn’t appear to have AN. What does she say about how she feels? She’s old enough to help direct her own care and not be governed by her parents’ inclinations. If she was given control, what would she want to do? However, also from those years of familiarity with AN, she may have one of the auto immune colitis conditions or that mysterious syndrome where the stomach just will not tolerate whole food. One girl was brought halfway around the world to the eating disorder specialist unit here with suspected anorexia and bulimia, but found immediately to have Crohn’s disease. The psychiatrist took her off all medication and handed her over to the gastro and immunology team. Gastroenterologists here in South Australia also have several young people on overnight enteral feeding permanently for complete food intolerance. In fact one young fellow has now married and his wife is expecting a child, even though he cannot eat normal meals at all without crippling pain and subsequent severe weight loss. I hope Justina recovers from whatever she has, or they find a satisfactory treatment for her ailments that leaves her with no significant disability.

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