Has anyone here experience comatose and after MRI result,finding was ADEM? My brother was been comatose for almost a month…after the MRI he was diagnosed with ADEM.
Hi britany, what was the cause of your comatose?
Yes, my son was comatose for 48 days. We found him that way in his bedroom. It took the hospital 8 hrs to determine what was wrong with him. He is still fighting to regain his life and independence at 27 months out. Not walking, standing or talking on his own yet, or anything else for that matter. It is a LONG road.
I was not in a comatose state, so I can't really tell you much, other than most people diagnosed with ADEM do recover , however it is generally a slow process. Take each little improvement and keep looking forward. What is your brother's first name so that I may pray for him and your family. I wish you all the best.
Lynn
Hi Zhylo - I'm sorry to hear about your brother. My son was very briefly in a state as your brother, but he responded after IVIG. I hope all goes well for your brother's recovery. Let us know how we can help you. Ken
Mary16 said:
Yes, my son was comatose for 48 days. We found him that way in his bedroom. It took the hospital 8 hrs to determine what was wrong with him. He is still fighting to regain his life and independence at 27 months out. Not walking, standing or talking on his own yet, or anything else for that matter. It is a LONG road.
Hi Mary, how old is your son? My son is 3. He wasn't in a coma, but he couldn't see, walk, talk or stand. His eyes opened, but his jaw was closed. Thank GOD he was able to breathe on his own. My son also has a LONG road to recovery. Actually we're 8 months post diagnosis and still have serious concerns, esp. w/ his sight and seizures. At this time we're trying to find the right seizure med. We've heard Topomax can interfere w/ his speech processing and that is what he's on. Does anyone have any other seizure med. suggestions for partial seizures? Thx in advance and God bless all those affected by ADEM. It's a difficult, heartbreaking illness for those affected, both individuals and family and friends.
JP said:
Mary16 said:Yes, my son was comatose for 48 days. We found him that way in his bedroom. It took the hospital 8 hrs to determine what was wrong with him. He is still fighting to regain his life and independence at 27 months out. Not walking, standing or talking on his own yet, or anything else for that matter. It is a LONG road.
Sorry to hear about your brother. May God bless him. How old is he? Did doctors do spinal tap too?
My son was 17 and a half when he got ADEM. He will turn 20 this week. It is horrendous. Good luck and God Bless all the kids and families here .
Hi Mary, you mentioned your son rec'd IVIG. Can u tell me a little more about this? My son initially rec'd IVIG when he 1st was diagnosed and it didn't help. He's 9 months post diagnosis and they are trying it again b/c he had a terrible month in April with 3 infections and his white blood count was severely low. We're glad they are giving it to him again. Thanks for any info u can provide.
HI JP, yes, my son received IVIG at least 3 times during the first 3 months of his illness. It really helped alot. I am not positive, but IVIG is used for people with auto-immune diseases to help them fight the disease. Some individuals receive these treatments once a month. Luckily we have not had to have any more of this treatment, but it is easy because it is just via IV for a day or two and the nurse has to monitor your son so he does not have a reaction to the solution. Depending on where you are, it can be real or synthetic blood components. Hoping I answered your question. Hope it helps your son. Keep me posted.