Hello from London England
My best friend was diagnosed with ADEM nearly 5 weeks ago. When first admitted into hospital she was still able to communicate slightly but over the course of the next 3 days her state deteriorated and she ended up in a coma and was moved to the Intensive Care Unit. She was started on corticosteroids, antivirals and antibiotics from the first day she arrived at the hospital and eventually had to be intubated to help with her breathing when she eventually slipped into her coma. After a week or so in ICU a tracheostomy was performed as this was easier to deal with her secretions/saliva and lack of swallowing reflex. She was in ICU for nearly 3 weeks and underwent plasmaphereris and immunoglobulin treatments. She had an issue with temperature spikes (a max of 39 celsius recorded at one point) over a period of 2 weeks or so and had very obvious hot flushes. Eventually she was moved out and onto a neuro ward nearly 2 weeks ago. So far no infection or virus has shown present in any of the cultures undertaken. She has had several CT scans which have shown several lesions in white matter of brain and inflammation in brain stem.
She has now been in a coma for nearly 5 weeks and I was wondering if anyone has had a similar long wait for their loved one to wake up? I haven't come across such a long wait in the stories I have read so far. I know every case is different but this length coma does worry me and seems atypical maybe? Any similar knowledge or personal experience would be welcome and in particular any details available of recovery after such a length of coma would be helpful.
I saw her today and it seemed that when I opened her eyes for the first time she really moved her eyes and looked at me directly and actually seem to "see"me....if that makes sense....
Thank you for sharing any experience you may have,