Acute Disseminated Encephalomyelitis (ADEM) Support Group

Update on sons recovery - February 2017

I have been so reluctant to write about my son’s progress because I have been feeling sorry for myself but I realized I can only remain sane if I accept what is. My son was given a six hour cognitive test in October 2016 at the University Hospital. There was a new fellow at the hospital and she informed us that my son will not fully recover because it is past the year mark. He was diagnosed in April 2015. She believes he will have cognitive deficits and will not be able to do the work he did before. He still can only read phrases and words in isolation. She informed us in addition to the myelin damage there was also damage to his brain. This was the first time we were informed of this but it may probably be because I asked many more questions than my husband does. So we are left in limbo two neurologist told us he will recover 100% and one said he will not recover because research with children having ADEM show that they have cognitive deficits after the ADEM attack. His lesions were active on the MRI from April 2015 up to November 2015. Physically he has recovered very well. He could not walk but is now doing very well. He did very well on a 6 hour hike on the mountain in Cape Town. We still see very slight improvements all the time. We visited family and he seems to remember everyone. If prompted he will recall information. When I ask him if he does not know something because he cannot remember it or because he does not know how to say it he normally says he does not know how to say it. His mood has improved and he does not engage in strange behavior any longer. We do healing meditations and give him a massage about 5 times a week this seemed to has enhanced his mood considerably. Before he could not talk much but his oral vocab has become more extensive. He communicates when he needs something or when he is spoken too. For now I have no expectations every slight improvement is a blessing and I pray every night for a miracle.

3 Likes

Sarah,
My husband reminded me just yesterday that I am different. I know it…I get so much more stressed out now. My emotions are now so much closer to the surface. It’s not always very comfortable. I am so glad he has not given up on me. Unfortunately, things are what they are now. Please don’t get so down on yourself. Your son counts on you. Keep in mind things could always be worse. We are all in my prayers!!! If you need to talk, we are here. Lynn

Things may well keep improving. I’ve spoken to people (and my own Neurologist) who say improvements can continue for years. The brain is always able to create new connections!
Here in the U.K. A baby was born with only 20% of a regular brain. By the time he was 2 yrs old he has grown 80% of a regular sized brain. Google 'the boy who grew a new brain’
We pray I will continue to improve every day, as does our family. God can and does heal! Never give up hope.
I may always be disabled but my children still have their mum. It could have been so…so much worse!
We all need to focus on the positives to be able to continue.
You and yours have my prayers!

Lou x x

2 Likes

Thank you for sharing the update. It sounds like progress.

The brain and body are capable of amazing things that will astound everyone including a single limited voice who told you definitely what not even the brain can tell you.

Keep at it. It sounds like you are all doing your best. That is great.

You did not say how old your son is, but I was 62 when I was struck with ADEM.

Nonsense that he will no longer recover! There’s evidence that he needs at least 2 years before making such a prediction.

I am sure you have heard the term plasticity. Meaning the brain is capable of change.

I see that in my own 7 plus year journey.

Hang in there Sarah, and continue doing the things you are doing.

Judy B

1 Like

Thank you so much everyone for your words of encouragement. Jmb my son is 33 now. We just did another MRI last week and it showed no new or active lesions. We also did rituxan chemo treatment because his white blood cell count was higher than normal. The neurologist says that because his attack was so severe they are doing chemo as a preventative measure.They fear that he might relapse. They will be doing another treatment in 6 months time based on his white blood cell count and hopefully that will be the last one. From the last time I wrote progress is still slow but he is starting to think and reason. His basic Maths skills have improved but reading and writing is still a struggle. The neurologist has recommended a further 6 months of cognitive rehab. The rehab believes that they are seeing slow improvements. I am so grateful for everyone on this site. It encourages us to keep the faith and forge on. Once again I am so grateful for everyone’s input and words of encouragement.

2 Likes

Thanks for the update. Continue to stay strong!

Don’t hesitate to update as much as you like @Sarah