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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
(108,980 posts)She did have diagnosis from an expert in the field. The metabolic specialist at Tufts had made a clinical diagnosis of mitochondrial disease more than a year earlier, based on her symptoms and her sister's muscle-biopsied case. The surgery for the muscle biopsy can itself cause a metabolic crisis, so when there is a biopsy proven case in a family, and a sibling also has symptoms, many doctors are reluctant to do another one. For one thing, it is possible to get a negative biopsy result and still have mito disease. For another, the treatment for mito disease -- certain dietary supplements in addition to what would be needed for particular symptoms -- carries little risk. So a metabolic specialist in this circumstance will often make a clinical or "working" diagnosis and attempt treatment -- which was working well, in Justina's case, until a bout with the flu sent her to the emergency room with acute GI symptoms.
In fact, she was skating a few weeks before B.C. got hold of her, but when her ordeal was finally over, she had to be carried into her house because -- after more than a year of withheld medications -- she's still not walking.
None of that court order you posted addresses her "care" at Boston Children's -- which went on for more than a year. It's all related to her care in Connecticut, after the judge FINALLY gave her medical care back to the Tufts doctors and put her in a rehab center in CT.
And since the judge was the one involved in the case all along, he has a vested interest in papering this all over to look as pretty as possible.