General Discussion
In reply to the discussion: We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier, [View all]pnwmom
(110,254 posts)articles, so you didn't read that there.
Every case of mitochondrial disease is different. So any doctor saying that CLEARLY wasn't a metabolic specialist.
She had a stroke at age 7, for which she needed to be treated, but she's had only two surgeries in her life. One was to remove a 20 inch band of cartilage that was wrapped around her intestines. That isn't a standard feature of mito -- just something that had happened to her.
The other surgery was for installing a cap allowing her intestines to be flushed out. Dysfunctional intestines are common with the disorder, though that procedure was a newer treatment for the problem. The GI doctor recommended it after thorough testing and observation determined that her bowel wasn't evacuating. Ironically, that same "extreme" procedure (extreme in the view of the psychiatrists) is performed by other doctors at B.C. And no one at BC is criticizing BC doctors for installing caps.
Her medical treatment at Tufts was clearly warranted. Her kidnapping by B.C. was not.