Hi - my 15 year old daughter was diagnosed with ADEM on December 28. She was hospitalized for 10 days and received steroids through IV for 3 days and is now at home, taking steroids for 6 weeks. She has gained her gross motor skills and vision back (90%) - but other things seem stalled. Half of her face, including mouth and tongue are numb - which sometimes causes choking and sometimes verbal issues. She can’t seem to spell very well and her fine motor skills (e.g cutting food, writing, colouring etc) are all not awesome. I am so happy that they were finally able to diagnose what was wrong with her - but I feel so scared and powerless that we have to wait and see what and how she will be affected in the long run. The fact that ADEM is so rare means there is really no one to talk to - so I am glad that I found this group.
Hi…my name is Lynn and I diagnosed in May 2013. I was numb from the chest down and I lost all function of my hands. 3500 mg of IV steroids in the hospital and improvement started. Now 3 years later, I still have residuals (neuropathies) in my hands, BUT, they work. Large motor function is fine, my problems are in my fine motor. We all have different symptoms, which makes things difficult. I consider myself lucky compared to some. We all are left with some kind of residual it seems. My personality is slightly different, nothing extreme. Emotional issues tend to be a one of the residuals. I can not multitask like I used to and sometimes I lose my words. Healing is a slow process. Take one day at a time and try to keep her stress low. Stress does not help the process. Any more questions, simply ask and please keep us up to date. Lynn
Yes things can seem very lonely in this world. Hardly anyone knows what ADEM is and there’s not many sufferers around.
I suffered in 2014. Was in a coma for 3 weeks, paralysed on waking. Got movement back from high dose steroids but was numb from the chest down for many many weeks. I think it took about a year to regain all feeling. Many many residuals to be honest. Too many to write on here. Feel free to ask any Q’s etc…
Lou x x
I am 28 and was diagnosed with Adem in september - i had the same treatment as your daughter, gained my motor skills back and the rest seems fine - but mri did not show any improvement even after 6 weeks of steroids, so they put me on ivig! And thank god my mri shows 50% improvement! Im still getting the treatment once every two weeks and hoping that in march when im done with it i will be cured! You should ask your daughter’s doctor if she could get ivig!
Hi-my son had ADEM when he was 5 years old. I am surprised they did not give a longer IV steroid. He was on IV steroids twice a day for 5 days then came home and was on oral steroids tapering off for a month or so. He also had physical therapy. He was back to normal after 3 weeks out of the hospital.
Thanks to everyone who has responded. She now is have strange tremor-like sensations in her legs. I am so on edge about whether the steroids are in fact truly working. She also has periodic paralysis of her right hand - for only a few seconds and then it functions again. So many little, strange things and I feel anxious about them all.
Try and hang in there. Don’t let her feel all your stress. Stress will not help her or you. I know that is easier said than done, but we have all dealt with it. Keep talking to us. What is her first name so I can pray for her? Lynn
Hi my 14 yr old daughter was took into hospital on 2/2/17 she still hasn’t been diagnosed 100% she’s had blood tests mri scans and a lumbar puncture but they still won’t say 100% if it is ADEM I think because it’s sooo rare. She had 3 days of iv steroids and is now home she continues 2 take steroids in a reducing dose in tablet form. She can now walk with a slight limp and is using her arm but like your daughter her fine skills are still not there i.e cutting food, plaiting hair, writing. We are waiting for physio appointment 2. But like you i’m anxious and scared incase the outcome is m.s