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.
I’m so sorry to hear your going through this.
My son Was diagnosed with Acute disseminated encephalomyelitis (ADEM) when he was 2 and a half. He became unresponsive very rapidly and steroids did not seem to be working so was sent to ICU and put on a ventilator where he was given plasma exchange treatment and continued on steroids. He did start to become responsive after a few weeks, slowly at first (eyes opening, some recognition, smiling). He continued with this and was moved to a normal ward but his speaking and movements were very limited initially. This improved after a few more weeks, he started saying a few words initially, slowly started to sit up with support, we used to hold his hands and Stand him up initially then walk him very slowly round the ward but his legs were very wobbly initially, he had no strength in them and his movements generally were very disjointed at first. He had physio in hospital and he did get stronger, was able to sit on his own, walk a bit further with support, his speaking came back fully but this was very slowed down and he was quite difficult to understand at times. When we were discharged home he weaned down off his meds and continued with his physio exercises and he did get stronger everyday and his speech started to get back to normal. Probably took about another 6months to get his speaking and movements fully back.
Sending lots of positive thoughts to you at this time, stay positive.
Hi there, many thanks for taking out time to respond. Sorry to hear your son had to go through this. The initial recovery for my son was pretty similar to what you’ve described here. While I understand every case and person is unique and recovery depends on that, I want to know how much time did your son take to fully become physically independent and start moving on his own. It’s been over 1.4 years now and I really cannot wait to see him up and running on his own. He is still on few medications as he has been having a few myoclonic jerks on and off. He walks with assistance and really wishes to do more activities, it’s just that he doesn’t know how much force he needs to apply to do a particular task. Sending love and hugs to you and your baby.
Ahh I’m so sorry to hear what you and your son have and are still going through.
He was starting to sit up on his own while still in hospital so about 4 weeks after his initial treatment. Walking on his own with no assistance was probably about 6 weeks but like I said he was still very wobbly and quite rigid
with his walking. I’d say another 4-6 weeks on top until he was walking properly. He managed to go back to preschool for the last few weeks of the year and took part in the sports day. He was walking fine and was able to run a little although he was still
learning his co-ordination (he came last in every race but his smiles said it all that day).
To get back to ‘normal’ as in running, walking not getting as tired and having better co-ordination with his movements It was about 8 months from his discharge from hospital.
I know it’s so scary and frustrating not knowing, but I found it helpful to focus on the little steps that were being made and these did end up being big steps as time went on. Is your son working with a physio, is there any advice
they could give to help?
Sending lots of love to you both
Thanks for the details. Yes we are working with a physio to help him, his neurologist and physio say he has chances of making a full recovery. Reading your story gives me hope. Thanks a lot.
Ahh that’s good, keep thinking positive I know it’s such a slow journey but it sounds like he’s doing amazing. Lots of love to you both, stay positive xx