As far as the "doctor shopping" goes that the parents have been accused of, my 2 year old relative recently was sent to a nearby state to see a specialist. Even before that, this child has seen numerous doctors of various areas of specialization....on the recommendations of another doctor each time. Would you call this Dr. shopping? The parents still don't know what is wrong, but love him so much, they would go to the ends of the earth to find out what is the diagnosis. As I said before, Mitochondrial Disease is very extensive as to the different syndromes, and in addition is difficult to diagnose.
I don't care what anyone says about how wonderful BCH is, someone there has made a huge mistake in misdiagnosing Justina. She already had a diagnosis, and a wet-behind the ears ER doc decided that he knew more than her own doctors.
Justina was sent to BCH by her Mitochondrial Specialist at Tufts, because her Gastroenterologist (who was treating her for her gastro issues) had taken a new job at BCH. But this know-it-all ER doc never let Justina be seen by her gastro. He decided her illness was all in her head. The reason her mito doc sent her to see her former gastro doc was because she had a bad case of the flu. When children with Mito become ill with viruses, flu, bacterial infections, etc., that is when the $hit hits the fan. They already cannot produce enough energy in their mitochondria, and now they are ill, don't feel like eating (like one gets when one has the flu) and become dehydrated. Quickly, things can go very bad, with different body systems shutting down.
Personally, BCH should get down on their knees and thank God that Justina didn't die on their watch. They could still get sued tho. My alliegance is with the parents.
