Fever after ADEM

My daughter, 5, is 6 months post ADEM. She had a slight cold right now, but today my oldest daughter came down with a fever which I’m pretty sure she got from her cousins. So, now I’m scared to death that my 5yr old is going to get a fever now also and cause a relapse! Has anyone gotten a fever post ADEM and been ok? I’m really nervous!!

My son Peter is now five years post ADEM and he is doing great. I remember the worry in those early months. Not really much you can do except remember that relapse is rare. You cannot protect her from every virus; viral illness is a fact of life. About 6 months after his ADEM, the world experienced the H1N1 scare with young healthy people dying. Everyone was getting vaccinated. I was so anxious about vaccination but his neurologist recommended a normal schedule. So, we vaccinated him and… No problem. Good thing we did because my husband actually contracted H1N1 and had a pneumonia. Who knows if Peter would have gotten the flu without that vaccine. So, grit your teeth, remind yourself that relapse is rare, you can’t control what will happen. I still watch him and worry about him but I don’t let it dominate my thoughts. That’s the only thing I can control:) It will get better for you!

Thank you so much Cedarmama for the encouraging words! My problem is, I do let it dominate my thoughts which I know I shouldn’t. As of now she does have a slight fever, so I’m praying that it’s just a 24hr virus like my oldest daughter had. I’m happy to hear that your son has done so well post ADEM! Hearing success stories helps ease my mind. Thank you again and best wishes!

Hi Lauren, My 3 year old son, Matthew is also 6 months post ADEM. At 3 months post ADEM he got a bacterial infection with a high fever and I was terrified. I immediately rushed off to see his neurologist for fear of a relapse. The neurologist assured me that a relapse is very rare and that from time to time Matthew will get fevers. Happy to say that after some tylenol and antibiotics things cleared up quickly. The neurologist also added that 6 months without a relapse generally means he is in the clear. I know how scary this must be for you and sending out best wishes for you and your daughter.

Hi Lauren - The first fever post ADEM is the most scary, especially for parents. As others have said, just grit your teeth and expect this to pass. Relapse is rare but that does not necessarily mean you won't worry (we all did). Probably for about a year post ADEM I found my son was more susceptible to fever or was most likely to get run down, and then sick. This was all part of gaining back his strength but was terribly worrisome for my wife and me. The good news is that now when he gets a fever we don't think it's a relapse, we just think it's a fever. Hang in there and most likely in a few days she'll be back to normal. Please let us know how she does and thanks for your note. Ken