A doctor just told us that my dad’s doctors think he’s in a permanent vegetative state and will never come out of the coma. He has been in a coma since June 1, had GBS since May 7, and ADEM diagnosis came along maybe mid-June based on MRI. Since then he’s had IVIG, no change, and now they just started him on ritalin and on low dose prednisone, as they are reluctant to try anything strong due to a major GI bleed he had in July. He does open eyes and respond to pain and moves hands and head very slightly, sometimes seemingly in response to voices, turn head to follow voice sometimes. They are pushing us to put him in a skilled nursing facility where they say he will likely not improve and eventually succumb to an infection.
We know he would not want us to persist in keeping him alive with such a prognosis, where we sure. But we’ve heard so many accounts of ppl being told this and surviving. And two weeks ago the neurologist on rotation said that if this were his father, he would be continuing to be hopeful and seek treatment.
What would you do at this point? We are overwhelmed and have no idea. We don’t want to give up on him if there’s hope, and we don’t want to persist if we are causing suffering.
Prestopp,
My name is Lynn and I also am an ADEM patient. I am so sorry you are even in this position. I or we can’t tell you exactly what to do. What I can do is give you some info on myself and some basics of ADEM. I was diagnosed in 2013 at 55 years old. I consider myself lucky, as I have not suffered like some. I was not diagnosed for month and my symptoms appeared overnight. I had numbness (pins and needles) from the both of my feet all the way up to my neck. I lost all function of my hands, where I had to learn to use them all over again. I spent 4 and 1/2 days in the hospital on IV cortisone. That finally started to ease the symptoms. Healing is possible, but it is VERY SLOW. Everyone has different symptoms depending on where the ADEM has affected the body. Most of us are left with some type of disability. As of today, I am doing wonderful, as compared to my diagnosis date. I personally, would not give up at this point. Sadly, not enough doctors are familiar with ADEM. Research as much as you can. I can send you some links if you’d like. Ask specific questions, on our site…we are all willing to share. If you want to simply vent, go ahead… Please keep us up to date. What is your father’s first name, so that I may pray for him? Please take care of yourselves, because he needs you to help him through all this.
Lynn