Acute Disseminated Encephalomyelitis (ADEM) Support Group

Hoping for a full recovery


#1

My son was 2 years old and just got diagnosed 3 1/2 weeks ago. He was just sick, then all of a sudden wouldn’t walk. They first though it was a tumor but after treatments and seeing that it reduced in size, they ruled that out. Fast forward to now, he’s still on steroids but tapering off them. He has very very little movement on his left side and he has face droop on that side and drools every now and then as well. He won’t voluntarily move his left arm or leg at all but if you tickle his foot, he will wiggle his toes. If anyone has any personal experience on similar situations. Please let me know. I see that every case varies widely but we are very anxious to have an idea of how much he will be able to improve.


#2

Hi
I’m so sorry to hear your going through this, it’s so horrible.
My little boy was nearly 3 when he was diagnosed, similar situation came down with a fever became unresponsive over the next 24hours and was ventilated and transferred to icu for plasma exchange. When he started to come round it was slow at first, not able to sit up / talk properly, very slow slurred speech. He had physio in hospital to help build his strength, he started to sit up unaided and after another week walk but was very wobbly. He got stronger and stronger with his physical movements but we noticed even when we got home one of his eyes drooped more than it did before.
This was over a year and half ago now and he’s back to his old self, walking talking normally.
Hopefully your little one will be back to full strength soon.
Sending positive thoughts


#3

Hey , so sorry to hear about your son. Just stay positive and calm . Yes each case is different but Recovery is possible in ADEM in kids it just needs patience . Just stay positive and strong . I will pray for your son’S good health and speedy recovery !! Keep us all posted .


#4

Thank you all for the responses. The more the merrier. Also, do any of you that’s been through it with a child, have pics of the initial MRI? I will post my sons, just so maybe we can have a comparison to how big the lesions were. Thanks!


#5

this is his initial MRI


#6

this is the MRI 2 weeks after the first one. As you can see the main spot has gotten smaller. Although, the DRs did say this was a little odd in ADEM to have one concentrated spot like that. He did have spots up and down his spine that were all clear on the second mri


#7

Sorry I haven’t got any pics of the mri scan. It’s good it’s getting smaller though. Sending positive thoughts xx