Acute Disseminated Encephalomyelitis (ADEM) Support Group

Toilet habits


Does anyone suffer from having to go to the toilet ALL the time after ADEM? My son seems to go every half hour when we are out. Also he used to only realise he needed to move his bowels at the last minute and then panick if the bathroom wasn’t vacant.


Pam, how old is your son? Does he have any issues with numbness type symptoms in the lower half of his body? When ADEM hit me, I had those symptoms and it proved interesting to say the least when it came to needing a bathroom. I had 5 days of steroid IV treatment which corrected those symptoms for me.


Yes - this "feeling" was very common for me during the first year of recovery. I think it might have been partially because I was unable to do anything for almost a week while in the hospital, and the recovering muscles and nerves take a while to connect with the brain until it's almost too late.

Hopefully it will get better for your son. It is better for me, and I'm 2 1/4 years into recovery.



Yes yes yes. It took close to a year to stabilize. It s been 2 years and 3 months since. This issue has solved itself but others remain unsolved… Patience. By the way I am 49.I was 47 when the “postman” knocked on my door…


For the first few months our daughter, 6yo, had the same frequent urge. We encouraged her to practice holding it for longer and she always could.