ADEM a second time

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.

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ADEM a second time

Postby johannaullman » Sat Jun 16, 2012 2:45 pm

I was glad to find this forum, as there are very few sites on ADEM i Sweden where I live and no discussion forum. So, sorry for my english :)

My son Vilmer (9 yeras old) yesterday got the diagnosis of ADEM, a second time (first time was in autumn 2010, 1,5 year ago). This time (as was the case 1,5 year ago) it was confirmed through the MR togehter with "spinal cord test". But, he got treatment (gamma globulin) already 2 weeks ago as we and the doctors were convinced that he is suffering from ADEM. He had very similar symtoms as the first time (cramp, headache, fiever, neck and back pain, some difficulties coordinating muscle movements, visual disturbances, weakness of one side of the body. However the symtoms this second time has not been as severe as the second time. Probably because this time ADEM was an issue a† an eariler stage. The hospital team thought it was better to give the gamma g treatment even though they were not 100 % sure about diagnosis. Alos, Gamma g is not bad for the body. He got better very fast after the Gamma g treatment, which also speaked for ADEM. Both times the MR; spinal cord test and symponts clearlys speaks for ADEM rather than MS.

They think that in this case it is mycoplasma that have triggered Adem, as some blood tests slightly indicates that have had mycoplasma.

We are of course even more worried about the future now. We have as many others a lot of questions. I´m trying to find historical facts about children that has been suffering from ADEM a second time, and how it went for them. We can read that about 10-20 % of ADEM patients have a relaps. Our questions are:

1. How does the statistics look for those who gets the diagnosis a second time? This is hard to find. Anyone of you who knows of any long-term studies and research showing the long-term prodnosis for ADEM patients and especially for those who gets it a second time.

2. Are there any studies/research that shows that MS becoms a greater risk for those who suffer from ADEM a second time? [/list]
Is there anything to [/list]do to prevent. I know the answer is no. But a read an old research artical describing that in the futur it could be possible if there were more knowledge about wjhat triggers ADEM. Anyone that knows more about this.

3. I´m asking my doctor if he could get ADEM a third time. The answers is no, and that we then we probably should talk about MS rather than ADEM. This correspond to what I can read in the litterature. But the word "probably" always occur.

Alos I just want to share our experience in the treatments our son got the first and second time:
The first time they gave him corticosteroid therapy. A few days after the therapy was finished his vision was reduce again and they restarted treatment, but this time with Gamma globulin and he got better much faster than after corticosteroid. This second time he was given Gamma globulin directly, as this was more efficient the first time. We alos had contact with a doctor from another hospital and their experience was that Gamma g is more efficient. Anyone who has any experience about different treatment methods?

Thanks in advance for answers, comments, and fruther sharing!

Wishes from a worried mother in Sweden :-s
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Joined: Sat Jun 16, 2012 11:54 am

Re: ADEM a second time

Postby eva » Fri Sep 14, 2012 2:54 pm

I also live i Sweden and my son had ADEM i mars 2012. He had had an virusinfection 10 days before he start to get pain in the eyes and in the legs. We stayed in hospital i Växjö but when the MRI show signs on MS we were transported to Lunds Universityhospital. We stayed in hospital in Lund for 2 weeks with treatment with steroid, plasmapheres. He had pain in his leg and loss of sensation in the feet, legs, face, mounth and he also have double vision. He couldn't walk and there was problem to urinate and defecation. It took time to recover and he attended school 2-3 hours per day. In the summer he hade time to rest and to train and now he go full time in school. Before the summer he had problems with attention and big fatigue but that seems to have gone away.
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Joined: Fri Sep 14, 2012 2:28 pm

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