Those of you who had fast and good recovery- Do you mind share the treatment you were given while in hospital? If Steroids- what was the dosage? For how long?
I believe I was mistreated and therefore still trying to recover 3 years later…
Hi - my daughter was diagnosed on December 28. She had 3 days of 100mg of steroids. After that she started to take oral
steroids at tapered dosages for 6 weeks. She just finished this week and we have an mri this Friday to see if the treatment has been successful. She has improved considerably - but has lingering physical symptoms - those being intermittent but frequent hand and tongue paralysis as well as her right leg not receiving messages clearly and sort of doing its own thing while walking (dragging, shooting out). Overall, I believe her treatment has been successful. She is back at school this week on a modified schedule and, although she finds it exhausting, is able to attend.
I’d like to know the same actually. So many people I’ve read about have had IV steroids and Plasma exchange. I don’t even know what those are. I was in a coma for 3 weeks, paralysed when I woke, hospital for 4 months and still have many residuals
I had Acyclovir to start and then some oral steroids about a month or so into my hospital stay.
I keep thinking what if…
Hi Naama every case of ADEM is different. It depends on the severity of the ADEM attack. My son aged 32 had the best known treatment for what doctors call a severe attack. He had steroid treatment, 7 plasma exchanges and 3 Cytoxan chemo treatments and to date 4 Rituxan chemo treatments and 1 year 10 months later he still in recovery. He will be done with cognitive rehab next month but still needs constant supervision, he can only read phrases, does not have an attention span longer than a few minutes. But although progress is extremely slow we do see progress but we are not sure about how far he will recover. One neurologist believes he will not fully recover and others are more hopeful so for now we are just accepting who he now is and making the most of what we have.
I read a blog of a girl a while back who said she took 5 years to recover 100% so there is always hope. Aerobic exercise apparently helps recovery because it activates the body’s own stem cells. We are also trying out eastern healing therapies in addition to our neurologist treatment. I do healing meditations with him every evening and have explore body talk- energy healing. Accepting him as he is now has made it easier for us to cope but we remain hopeful that he will get better and better over time.
My daughter, 31 at the time, had 3 days of intravenous prednisolone for optic neuritis in 2015 then got discharged for Christmas, which should not have happened.
Got re-admitted immediately after Christmas and went on intravenous prednisolone again, taken to London and given plasma exchange but that went wrong because the line in the neck could not be done, femoral line went in but faulty causing internal bleeding so the plasma exchange didn’t get going for about a week later after surgery to sort out the ‘accident’. Then on 3rd plasma she got anaphylaxis shock so they had to alter the plasma for the next 3 when she was ok. So all in all, if Christmas hadn’t been involved, she might have recovered quicker. She finally left hospital into rehab on 7mg Prednisolone and decreased 1mg per month for 7 months. She is still in recovery with damaged nerves in bladder, vision, and a further MRI due this weekend on her spine due to calf muscle playing up.
Hy, early May, my son was diagnosed with ADEM. In this August, CT Scan showed a good development in his brain, doctors say his illness is healed and treatment for ADEM has been discontinued. But since mid-May until now, his condition is still unconscious. How long will it take for someone to regain consciousness after ADEM attack? What should I do to help speed things up so that my child can quickly become aware?
What treatments has he had?