Friday, March 25, 2005

No cases of recovery from PVS?

It seems the reason CNN's Dr. Sanjay Gupta and others can't find cases of recovery from PVS is because the treating physicians change the diagnosis if the patient improves!

Rae has posted a whole list of stories about people who were diagnosed PVS, and recovered to one degree or another-- at which time the doctors said, "Oops, sorry!" ((NOTE: scroll down to the posts beginning March 23.))

1 comment:

Rae said...

Hi Cynthia,

Thanks for the link! It doesn't work and I don't know why -- trackbacks are something I do not understand. But I am glad you are reading, and wanted to drop you a note to say thanks for fighting for Terri Schiavo.

I have personal experience with this, which is why doctors' misuse of the PVS diagnosis is of great interest to me. I had a son born with an always-fatal condition. I wanted to know, was he also PVS? No information existed about the cognitive functions of infants with thanatophoric dwarfism. So no doctor could answer my question, would Eric develop normally before his lungs gave out and he died? One doctor told me that he would be a "vegetable" if he lived, another told me that the responsiveness I reported was not real and was "from a mother's eyes." I took issue and brought in a developmental specialist. She evaluated him weekly and eventually produced a report confirming that "When he was alert, he displayed good interactive skills. He enjoyed having someone talk to him, play music for him, and stroke his body. He enjoyed stimulation, made progress developmentally, and offered positive feedback to those who interacted with him. A full-term, respirator dependent infant often needs stimulation and is very capable of interacting with his/her environment." I had that info published in the Delaware Medical Journal, see http://www.udel.edu/fllt/staff/stabosz/thanatophoric.html so that the next parents of a thanatophoric dwarf would know more than a pre-natal diagnosis and post-mortem autopsy, the only information available to me from a search of medical sources worldwide at the time.