Beena has been reaching out for some help from other parents. We all know how difficult this whole process can be. Please take a few minutes and respond either on this message or by emailing her directly. Personally, I have ADEM and not my child, so I come from a different direction. Thanks, Lynn
This is the first time Beena has posted — let’s welcome them to our community!
Hi, I’m new to this group. My elder son was diagnosed with Acute Hemorrhagic Leuko Encephalomyelitis in Dec 2018, he is 4.5 yrs old now and was 3.2 yrs old when he got the illness. Tests for all possible virus and infections came in negative. It all started with flu like symptoms and while he was on paracetamol to bring down the fever, his temperature shot upto 105F and he had seizures later that night. He was unconscious for 12 days and had to be fed using Ryles tube. He started speaking single words almost two months later. He was given Steroid dosage and also IvIG at the hospital. My concern is, he still cannot walk/sit/move on his own and also speech is sluggish. I want to understand if there are any fellow parents here who’ve had a similar unfortunate incident and if there’s scope for my son to completely recover and move independently some day. I can be contacted on firstname.lastname@example.org.
Appreciate any help in this regard.