So, where to begin. Our six year old daughter, Lily, was paralyzed for about a day last May. Lily’s right side was effected the most and so we’ve been waiting for her right hand and foot to wake up completely. Her muscles have been clenched but slowly over time we rejoice as she is able to open and relax her fingers. At this point we’re waiting on her thumb. The other major difficulty for her has been her speech. The right side of her face wants to clench into a smile which makes articulation a challenge. She can walk and run just fine, though her gait is a little funny. She quickly learned to draw and write with her left hand. So, she has been doing really well! She went back to school in the fall and she is in 1st grade at a public Montessori school. She has had trouble finding friends which she vents about at home sometimes but her teachers have said that when at school she is very cheerful and focuses very well on her work. I think it’s hard for the other kids to understand her. She enjoys her therapy; she has OT, PT and ST once a week. She had her follow up MRI in late January and the dr said the difference was night and day. 
Things were going well until our whole family got sick with colds in February. Lily’s speech became much worse - way harder to understand. We thought, okay, lets watch this I bet she’s just really tired. She wasn’t sick anymore but her speech was still harder to understand than it had been. This Friday she had an opportunity to ride the zamboni at a hockey game. It was fun but still a little scary for her. She’s 7. Then on the way out to the car she slipped on the ice and scraped her knee and bonked her face. Saturday she was fine and we spent the day at home. On Sunday morning she complained of seeing double. She said she sees four eyes but she can easily ignore the second pair. We took her to the doctor on Monday and she suggested another MRI, which will be in a few weeks. So I’m wondering if it’s from her fall on the ice or is she relapsing? I was searching the internet and i found this site. I read a few recent discussions and it sounds like others of you or your child recovering from ADEM have experienced blurry vision when tired and overwhelmed. I really hope that’s all it is! Lily did end up having diarrhea on Monday night. So it is possible that her body is tired from fighting illness and from the stress (even if it was fun) from the Zamboni riding event. She stayed home from school Monday and Tuesday but this morning, Wednesday, she woke up and felt ready to go back to school.
So, to me, altered vision seems like a really big deal. But could it be that in the context of recovering from ADEM it is just a sign that she needs more rest? I really dread a relapse. I can’t imagine going through all this again. But I guess I will if I have to. We’ll know more after the MRI.
Hi Lily's Mom. The dreaded relapse, something I know we all worry about. 3 years post ADEM I think I finally am in a place where I don't worry endlessly about a fever for my son. What a coincidence that Lily is now a lefty. My son's right side was affected the most and he learned to write with his left hand, making him a lefty and his identical twin brother a righty. IT's great that you're doing PT and OT. We found that had a huge help for our son.
In my experience with our son, the first year he seemed much more sensitive to fatigue and sickness. When we was tired he would just melt - he was emotional, less active, less talkative (this one always worried me the most), and it would take him several days to get enough sleep and go back to his old self. At times he would complain about neck pains and a headache, but we never could figure out what those really were. When he was sick he would be much that same as when he was tired.
If you're worried enough to get an MRI then I'd do it. It's two weeks from now so you have the ability to cancel is Lily gets better in the next week or two. Please keep us posted and let us know how we can help you.
Hi there. Let me tell you the sequence of events from an adult’s prospective.
Had my first symptoms in a January, no dramas, but after a spinal tab with 30 white cells and a not so clear brain MRI was diagnosed with adem. Numb hands. Then it got clear in April after 5 plus another 5 iv s of solumendrol in the meantime. Second spinal tab only showed 3 white cells. But the worst came in July with a major relapse that left a lot of problems behind it. Most recent two MRIs look clear but I am always on alert trying my best to avoid flu infested places as I know that the activation of the immune system could easily create another wave of white cell migration crossing the blood brain barrier causing another mayhem. I try not to push my body too hard either. Thank God the optical nerve was not affected…
Hi! I know it’s a hard thing to take to heart but post-ADEM,for the vast majority of kids, a cold is just a cold, being tired is just being tired… My son had a very severe case over five years ago and occasionally we still feel a twinge of worry but mostly we just carry on. He has made a complete recovery. If you don’t want to do the MRI but want some reassurance, your neurologist could just do a thorough neurological exam? A proper examination should indicate if anything neurological is happening. It gets easier as time goes by.