I read over the previous posts and, although I might have missed it, I was surprised that I did not see a mention of or link to the clinic note from the director of the Metabolism Program at Boston Children's (Korson's contemporary). This was posted on Beau Berman's FoxCT Facebook on December 23, 2013. Berman posted a statement that he could not reveal his source, but the details in the report appear genuine. I have seen references to it on a few news forums.
Dr Gerard Berry is a geneticist and expert in metabolic diseases (like Mitochondrial Disorders). He initially saw Justina at BCH on February 10, 2013 - the day she was admitted. Without access to the entire medical record, we do mot have any way to know if or how frequently he followed Justina after that date.
https://www.facebook.com/BeauBermanFOXCT
"From Boston Children's Hospital "Consultation Notes" dated 4/25/13 obtained by Fox CT News:
Metabolism Consult 013
Patient Name: Justina Pelletier
Originated by: Stephanie Newton MS on 2/10/13
Authenticated by: Gerard Berry MD on 2/13/13
Print Date/Time: 4/25/2013
"HISTORY OF PRESENT ILLNESS: Justina has a longstanding history of possible mitochondrial disease with abdominal pain, poor motility, headaches and fatigue. These concerns started becoming much more severe in October 2012 when she began having what is described as odd movements of her right leg which caused her foot to pronate. She was seen by an orthopedic doctor, Dr. Webster at Tufts who prescribed a brace for the leg. Over time Justina's abnormal movements began to affect the left leg and now the rest of the body is affected. Her mother reports that over the past week she has had increased weakness which cause (sic) her to not be able to walk. She is having significant leg pain. Her headaches are becoming worse with light and sound. She also has intermittent slurred speech and altered mental status. Her mother reports that over the last 6-8 weeks her slurred speech and 'gibberish language' has been getting worse. Justina was admitted to Connecticut Children's Hospital on Monday February 04 due to worsening neurological problems as noted above. Her mother reports that it was difficult to complete this admission as Justina was not felt to have a known identifiable diagnosis. Her mother chose to bring her home from the hospital on February 8 hoping that she would do better. After discharge she was still not doing well, complained of feeling weird was not eating and had abnormalities on swallowing. Her other physicians were consulted and it was recommended that she be admitted here at Boston Chidlren's Hospital. She has been here since February 10."