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In reply to the discussion: We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier, [View all]pnwmom
(108,979 posts)The initial story was in two parts, and I put the link down for the first. But they had a number of follow-up stories, too.
I've read nothing about whether a flu was ever officially diagnosed. As I understand it, her parents brought her to the hospital because they thought she had a flu, and that she wouldn't stop throwing up -- which, for a girl with mitochondrial disease, is a real crisis.
(A few years earlier she had had another crisis and she needed surgery for it -- she had a 20 inch band of cartilage wrapped around her intestines. They removed her appendix while they were at it, to prevent future problems. But her intestinal problems -- which are often a hallmark of mitochondrial disease -- continued. They were so severe that even with heavy laxatives her bowels were impacted. So after testing her bowel motility, her GI doctor at Tufts decided to recommend that they install a "cap" that would allow her intestines to be "flushed" as needed. These were the "multiple surgeries" that the Boston Children's hospital psychiatrists objected to. Ironically, other GI doctors at BC perform -- on other children -- the cap procedure that the psychiatrists thought was so extreme.)
So, to answer your question: no, we're not sure she had the flu. And, yes, she DID have an underlying condition that can cause flu-like symptoms: the mitochondrial disease that had been previously diagnosed by a metabolic disease specialist, Dr. Thorson, a professor at Tufts University. He made a clinical diagnosis based on her symptoms and the fact that her older sister had a muscle-biopsy proven case of the disease. (A negative biopsy doesn't rule out mito disease and the procedure itself can cause a health crisis, so many doctors would opt not to put a second child in a family through the procedure if that child had symptoms like a sibling with a positive biopsy.)
Unfortunately, at least one psychiatrist at BC has been reported to say he didn't "believe in" mitochondrial disease. But the disease he apparently believes in, Munchausen by proxy, is much rarer than mito disease.
You're right -- we can't know for sure that her health wouldn't have worsened anyway. But we do know that they removed her from medications that had appeared to be helping both her and her older sister -- and that she is worse now, not better. (One of these "unnecessary" medications was given to correct an irregular heartbeat, and was important because she'd had a stroke at age 7 -- so her parents were particularly fearful about that medication being taken away. I don't know if she was ever put back on it.) Whatever they were doing did not stop her decline and also deprived her of the support of her family (who were only allowed 1 hour per week visits) for 16 months of her life. All because of what Dr. Korson told the Boston Globe was a "hunch" that she had somatic disorder. That her brain was producing her symptoms.
You are also right that the right-wing was fueling the story. But that's because the left-wing dropped the ball. And I'm asking why? We care just as much about children's rights and health -- much more, I think. We actually want all children to have proper food, housing, and health care. So why, when these parents reached out for help, and the Boston Globe published its story, did the MSM for the most part, ignore it? And why have her only champions been people with right wing and religious agendas?
If the right wing suddenly decided to go with the Catholic "whole garment" pro-life theory, and suddenly decided to oppose the death penalty, would progressives suddenly have to start promoting the death penalty? Do we only act in opposition to the right-wing or do we have some principles we stand behind even if -- horrors -- the opposition comes to the same conclusion about an issue that we do?
Maybe BC has another side that hasn't come out. But I don't support the state being able to remove children for 16 months without a very good reason. And there is no evidence that this was ever anything other than Boston Children's not agreeing with the diagnosis Tufts doctors had given her, and accusing the parents of "overmedicalizing" as a result.