What's next?

Anyone know next steps?

A little back story- My son was diagnosed as of May 2015 or so- after pretty much ruling everything else out and realizing how well he responded to the steroids and anti-biotics combo he was administered when he was presenting symptoms of staring spells and eye rolls. His MRI revealed Leukodystrophy (sp?) - inflammation on the wiring of his brain. We've never done a second MRI.

Have most of you done follow-up MRIs??

He hasn't had an attack since maybe June or so- he's since graduated from his Occupational Therapy and his Speech Language Therapy- which he'd started before his diagnosis back in November 2012- at 19 months. He'll be 3 yrs old in a few weeks and it's really incredible how far he's come and how much he's his own person.

This has been a wild ride, and hopefully we can maintain where we're at now- just curious what all of you are finding for next steps lately...?

My son was 5 or 6 when he was diagnosed. No follow up mri, he is 12 now with no complications. It gets easier to let go with time.

Hi Mama Bear -

We did a follow-up MRI with our son about 18 months (give or take) post ADEM when he was around 5 years old. He was still too young then to sit still in an MRI machine so he needed a general anesthetic. It was really, really, hard for us to decide if we should put him under for the MRI versus just waiting to see what his recovery looked like. Ultimately we decided we wanted to understand if there were areas of residual injury, so that if so, we could create a plan to help him overcome any deficiencies. The MRI came back clean which was a huge reassurance. If it had not come back clean then we were prepared to work with the doctors and teachers to find a way to help him recover fully.

I don't think there is a "right" answer here, but if it helps with your thought process, we decided more information would help us do what was best for our son. We were prepared to live with both good or bad news, we just wanted the data. Hope this helps.



Hi Mama Bear,

I'm very new to this site but our Neurologist recommended a follow up MRI in 6 months. My daughter was diagnosed about a month ago. She had IVIG treatment and steroids. She will be coming off the steroids in a few days. She is completely back to herself again, We are hesitant to do the MRI as well because it would require her to be under anesthesia again. We will most likely have it done to see if were officially in the clear. That way if it happens again we will know why or what the next steps are.

May 2014- that should have read. sorry! I'm not from the future. :)

You know, I think we will wait to see if our son stays "attack-free" for a year from his last attack before we inquire as to whether or not he needs the second MRI. While it'd help me sleep better at night, if we don't have to do that smothering your child with the anesthesia thing ever again, that'd be great. I can't tell you how traumatizing it is to have to hold your child down and cover their face and feel their body go limp and help to move them onto the table- those of you who have done this before totally get it. When we'd done it the only time he's had the MRI, it was a high risk MRI because he was so sick at the time, they were very worried about putting him under... so if we can avoid it- we will. I just know that seems like the best way to get answers about whether or not we're in the "clear"... the impression I get from our Pedi Neurologist though is that this is likely something he'll have until he hits puberty and his hormones change, and at that point- it might self correct, but up until then, we have to be on watch for every cold he gets- to make sure he doesn't present the same symptoms he'd had.

I'm so grateful for this group of folks who are trying to understand this mysterious illness and how it manifests. We've recently learned we should apply for Medicaid with this diagnosis. Anyone else hear that?

Mama Bear - You brought tears to my eyes as you described holding your son down for anesthesia. It's the worst feeling tin the world. There's no need to rush with the MRI. The time may come when you want to do one, but it's great that you know you don't want to do one now. Keep us posted on your son. Ken