Acute Disseminated Encephalomyelitis (ADEM) Support Group

Adem/ms 4 yer old baby lost hearing


#1

My baby had adms/ms on 2016
He is 4 year old baby
He lost speak
He lost hearing

Any one have experience


#2

My experience with my son is similar had first episode of ADEM at 2yrs & second episode at 4 yrs. Stopped walking & talking but this improved after 1 week of prednisolone & weaned off over 3 months. Now one year later physically ok, with some occasional leg pain, easily frustrated & sensitivity to noise.


#3

Our 6yr old son got ADEM Feb 25 of this year. He can hear and see fine, but still can’t talk or move much. Two years later your son is still not doing well? ADEM can be devastating.


#4

Thanks , my baby look like healthy he is going paly school
Fist he lost 100% hearing after six months he have improvement now 30 % recover his hearing
Now at night he have itching all over the body
He has undergone Iv and IGG
Last six months no medicine


#5

My daughter was diagnosed In January 2018 but fell sick the day after Xmas 2017 by January 26 when they finally figure out what was happening to my daughter age 4 at the time, she could no long walk very little speech lost all control of her bowels and was diapered, could hardly eat and choked on liquids when drinking she was completely paralyzed from the neck down she couldn’t lift her hands off her lap, she had sensitivity to light noise and touch I couldn’t even kiss her or cover her with a blanket with out it hurting her and lost almost alll eye sight 20/80 vision , today July 2018 my daughter is walking talking like a normal 5 yr old has 20/25 vision and is almost to base line, but still has weakness on one side of her body , and has flare ups often but overall is back to normal besides all the side affects of steroids still! I pray your son recovers and his goes away for all of us this adem is a nitemare and I pray they find a cure and figure out a way to manage it better!!


#6

Has any Doctors tested your baby for a virus? Such as Epstein Barr or Herpes Zoster?
It’s worth a try, to rule a virus out since this horrible disease can be viral.