ADEM recurrence

I’m worried that my husband is having a recurrence. Can anyone who has experienced this share their symptoms or observations please?
Thank you so much. Kris

Kris, How is your husband today? I’m under the understanding that adults don’t have recurrences, unless it may be MS? Does he have the same symptoms? What does his doctor have to say? Lynn

Hi Kris hope you are doing ok. From our understanding with our neurologist a recurrence of ADEM is unlikely unless it is MS. With adults especially it may be MS this is why our neurologist plan is to check my son’s B cell count levels every 6 months for the next five years. If is is too high then the plan to do chemo using Rituxan. My son’s was admitted in April 2015 and the lesions
were active until November 2015 based on MRI results. Even though he had done steroid treatment, 7 plasma exchanges and 4 rounds of chemo lesions were still active. Only after the 5th round of chemo did the lesions stop growing. Not sure if this helps. It is a long and hard road but we see slight improvements all the time. All the best to you and your family.

Robert actually seems better. We did an MRI on Friday and don’t know what that shows yet. He is going to be coming home in about 3 weeks. He is still almost 100% dependent but he does seem to be getting better each day. I don’t anticipate this will be easy but I think when he as home around all that is familiar he will be more motivated. :blush:

Hi Kris, glad he is coming home. It is one step ahead on the road to recovery. It is a long and difficult road. Please take care of yourself too. When my son came home it seemed harder for us at first. Although he is at cognitive rehab during the weekdays weekends can be tough. I eventually arranged to get a tutor (College student) for him on Saturdays and Sunday for at least one hour on Saturday and one hour on Sunday. I take care of him on Saturday from the morning till about 5pm. It is my husbands golf day. He takes care of him on Sunday. We both have at least an hour break because we have to constantly monitor him. He is like a 2 or 3 year old that gets into things and he used to go outside and take a walk by himself we were worried he would get lost so he has to be constantly monitored. Hopefully you can arrange to get some help to have someone give you a break now and then. Exercise is also helpful to help in brain healing. Physical activity as well as reading is important for recovery. We put the closed captioning on on all the televisions to further encourage reading. He is getting better at remembering but we always have to give him ques. Recovery is slow but there is constant recovery with ADEM. We also play online memory games and build puzzles. He loves listening to music and it enhances his mood and we dance together and click our fingers to get the beat of the music. This week for the first time he was able to build a puzzle of the United States independently. I also have him build a puzzle of the World and the Planets. I try and get him to remember historical facts and repeatedly test him. I found a free brain injury workbook online. Google “brain injury workbook” online. When he just came home he was unable to use these workbooks but we are able to do so now. This is such a unique and life altering experience. The only way I cope is to accept him as he is. Every improvement is a bonus. But there are times when it really hurts. All the best to you and your family I will remember you in my prayers.

Thought I was having a recurrence this week, but putting it down to the fact done too much decorating and gardening in the heat and body not having any reserves and is just ‘shut down’. Every day doing nothing much on the sofa makes me feel a bit better

Hope you’re feeling better. Try drinking lots of water before you go outside. Simply take your time outside and take breaks. You may do better.