One Year old Girl infected with ADEM

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

Moderators: marieke, jlubin

One Year old Girl infected with ADEM

Postby Sally Ragai » Wed Jun 22, 2011 2:51 am

At the beginning symptoms was High fever for only one day then Hard Cramps then she goes into deep coma , all that was suddenly & so quick
the Doctors made magnetic resonance imaging (MRI) scan and discovered that its was Adem caused by Herbs Virus
it affected the Brain Stem completely,she goes in this coma from First of May 2011 till now.

She was treated with High-dose steroid treatment given early during the illness the recover was shown on moving her legs & hands, openning her eyes
but she can't see neither feel she still in coma ,the doctors told us that those movement done unconsciously.

we don't know what to do is that movements considered really nothing !!

If anyone has an Experience similar to those Symptoms which can really help us & give us a hope as the doctors told us that the percentage that she could recover from the Coma is very low & the damages left from the Virus in the Brain may caused a Disability.
Sally Ragai
Posts: 1
Joined: Wed Jun 22, 2011 1:36 am

Re: One Year old Girl infected with ADEM

Postby Shirley » Wed Jun 22, 2011 6:28 pm

Sally, welcome to the forum that no one really to be in, but, having said that there is a pile of infomation to read. I'm not a ADEM patient but an, idiopathic TM pt. I'm truely sorry your daughter has ADEM, it sounds as tho the treatment given was done quickly, which would give me hope of a recovery. I cannot help you on that score. Everybody is different and these neurological illnesses affect everybody differently. Her lesion is very high in the brain stem, that would indicate some disability on recovery.

Please read and print the infomation on ADEM. There are videos available on this site of the recent symposium on rare neurological illness in Dallas. Please keep us in the loop, Sally, and let us know how she is doing.

Take Care.

Keep well


TM since 2003 - 90% recovered
User avatar
Site Moderator
Posts: 773
Joined: Wed Feb 25, 2004 2:03 am
Location: New Zealand

Re: One Year old Girl infected with ADEM

Postby Trentsmom » Sun Jul 17, 2011 9:06 pm

My Son had an fulminant ADEM when he was 12 months old. He is now 5 and a half. He will be starting Sp ED Kindergarten in the fall. He is alive, funny and the most charming, amazing kid to be around. Is he typically developing? No. Is he happy? Yes. Am I happy. Yes....most of the time. You have just been inducted into a "CLUB" that you can't buy your way into. No free passes here. My son was also in a coma and when he awoke, he could had completely regressed to a pre-newborn state. He could not see, sit up, eat, walk for many more months. The doctors told us nothing. I could not see the road ahead. A lifetime road. My son continues to have challenges in fine motor, language and cognitive but he is soooooo amazing and I am bvery blessed. I know this is not what you expected. It certainly was not what I expected. I was angry, confused, in shock. But now realize there can be such a blessing with the pain this abrupt, unexpected change in your life course. My experience with ADEM has been one of the hugest challenges in my life but the most rewarding. Please feel free to PM or call me if you want to talk, vent or ask questions. I have been where your at... hang in there.


Alison/ Trent's mom
Posts: 13
Joined: Mon Sep 03, 2007 6:50 am
Location: Bothell, Wa USA

Return to Acute Disseminated Encephalomyelitis (ADEM)

Who is online

Users browsing this forum: No registered users and 1 guest