4 year old diagnosed with ADEM

My 4 yr old granddaughter was diagnosed Dec 10. Did the 5 day steroid treatment, was released from hospital. Was improving , then as he decreased from 20mg prednisone to 10 mg, got worse. Was admitted to the hospital again, did the 5 day of high dose steroids again, then released. Never showed much improvement this time, and started getting bad again. Was readmitted, did IGIV and is still on 60 mg prednisone. And will be on a 2 month taper from here. I guess I really just want to hear from folks with children that may have been similar. I kind of want to know what to expect. Has anyone else had children that had to go back and forth to hospital.

Hello. I am 28yrs old and when this started last year they started me on oral steroids at 40mg and tapered down. Once I got off them within 2 weeks I would have another seizure. By the 3rd seizure i was hospitalized amd they did the 5 days stterois. Then put me back on oral steroids. I am just now getting tapered off. I have been feeling great since then. May I ask how your granddaughter got ADEM and what her symptoms are/where?

She had a virus with a fever about 10!days before her diagnosis. The doctors say that is how it developed. Within a 48 hour timespan she went from being fine to not being able to grasp things, her head leaning to one side, not being able to walk and her eyes were like a distant stare. Right now she still is having trouble walking. She has to have help.She has lots of tremors, her left eye crosses in. When she tries to write, it is hard for her because of shaking. She has improved from when she was at the hospital. But I can see that she has a way to go. Are your seizures from the ADEM or from the high dose of steroids. She will be tapering off a lot slower than previously. She is still on 60mg now. She will taper over a 2 month period

My seizures were caused from the ADEM. The first two I had I would just stare off into my own little world then when i would come too i was fine. My 3rd one was bad. I couldnt talk or answer any questions. I was completely out of it. Did she have an MRI? Does she have lesions in her brain or on her spine? I hope she starts feeling better soon!

She has had 3 MRI’s. The first showed multiple lesions on her brain. The second showed improvement in the original lesions, but she had developed new ones. The third showed both new and old had grown. She has not had seizures but does stare off into space.

I have had a ton of MRI’s. None have shown anymore lesions. They just keep getting smaller and smaller. But I had another seizure yesterday. I have a MRI and EEG scheduled for tomorrow.