Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM and sadness


Hi folks!

My 6 year old who had an ADEM episode in October of last year has been complaining of sadness a lot. I am wondering, has anyone else experienced unexplainable sadness after the illness? He get's fatigue, has difficulty focusing when in a busy environment, has trouble retrieving memories without context, and this sadness thing - not sure what it is. Thought I would reach out to see if this is just a stage for him or possibly another residual element of the illness?




My son also was sad for about the first year or so. His emotions are still not back to normal it has been 5 years now. He use to say" why does my brain do this or make me act like this". It broke my heart. It did get better but it was slow. Everyone is different so go with your mommy instincts and seek help if you think it is not improving. I wish you the best in life and the strength to handle a disorder that is not widely understood.


I ment to add my son is 11 now. Sounds like they were about the same age when they got it.


I'm not 6 years old, but I have found that emotional ups and downs are fairly common for me, and the odd thing is nothing necessarily triggers it. I'm guessing for littler folks this would be more susceptible as they have a harder time understanding what's going on.

I don't know what to suggest, but I have been going to a counselor to get some tools for dealing with random emotions and frustrations. I know my counselor sees kids with their parents, so that might be worth a shot.

Best of luck,



Hello. I was exactly
The same. It’s been a year now and I’ve only just learnt to manage the sadness and upset stage. I was very impatient and didn’t want to believe it happened to me but I did have counselling. It’s frustrating more than anything really, I still forgot certain things like words and my fatigue is very bad. I get tired but then can’t sleep.


Dear all.
My son had it in April 2013, and we have many bouts of up and down mood, tearfulness and episodes of “sadness”… I would be careful and still get screened for depression as much as it breaks our hearts. I am reassured though that unlike our brains, kids are very resilient and cam overcome this. I have let my son create a hand sign that lets me know he wants to go home if in crowded spaces or if at home, that he wants to be left alone or w one of the parents when this episode happens.

It breaks my heart to know how severely this ADEM took life as we knew it away and made it upside down. However, I am grateful that he is alive and there is overall good prognosis.

Perhaps we should set up a monthly conference call for parents whose kids are going through this for mutual support.



I believe depression is one of the residual elements of ADEM. Feeling sad is a symptom of the inability of the brain to process. 5.5 years out from my own illness, I still take antidepressants for pain control and secondarily for depression.