Acute Disseminated Encephalomyelitis (ADEM) Support Group

Anyone have an initial clear MRI?

Hi,

My son is 2 1/2 and had a cold with a one day fever 6 weeks ago. One month ago he began having severe head/ear pains which lasted 10 sec. They progressed in number as a few days went by. He was cleared by an ENT and had negative sinus x-rays. He began having increasing neurological symptoms and his gait began to deteriorate. He had a brain and spine MRI which was clear. He began showing some signs of improvement 2 weeks ago but then all symptoms came back and his gait is worse. We have seen multiple pediatricians and neurologists. One Dr. suggested ADEM but the neurologist dismissed it because his MRI was clear. We are considering a spinal tap next week. He has all the symptoms of ADEM but his MRI is throwing us off.
Has anyone else had an initial MRI that was clear? His MRI was done 1 week into symptoms which compared to many people are mild. Thank you so much for helping me navigate this.

https://xa.yimg.com/kq/groups/21983256/286872028/name/Acute+disseminated+encephalomyelitis+in+adults.pdf

Look halfway down page three of this doc. Whilst this is about ADEM in adults, it does note that : 'While the studies cited above have observed that MRI is almost always abnormal in ADEM, one series reported that brain MRI was normal in 5 of 10 adults with ADEM, even after multiple repeated scans. Others have noted that there may be a delay in the appearance of MRI lesions; in one report the time lag to MRI lesion appearance was eight weeks from ADEM symptom onset.'
I hope that helps
Mac

Thank you so much Mac. I read a study from 2001 about a delay in lesions and I plan to bring this UptoDate article to the Neurologist. I appreciate your help.

Anytime. I hope it helps.

I’m not a medical doctor but pretty much involved in this situation. What I guess it is not ADEM as suggested by your neurologist. What I know is that ADEM do not take that much time to attack. It is game of days or might be of hours if I’m right.

ADEM makes swelling in brain specifically in white matter and I don’t think that today’s technology (MRIs) could mis it out.

You should think to make more investigation such as spinal tap(LP) or EEG etc to make the picture clear.

Wishing lots of luck.

I did. I had a clear MRI the day after the excruciating headache began. Then two days later something showed up.

I’m not sure the why on that, but I think that’s sadly fairly common.

Also a “relapse” can happen within the first month. It’s not so much a relapse as the brain trying to navigate it’s new normal. Some “connections” get disconnected with ADEM, and it takes time for the brain to reroute.

Check out www.myelitis.org for resources on doctors and podcasts about ADEM. Hopefully that can help.

Best to you,

Laura

my son was 10 when he was diagnosed. his spinal tap was clear but the MRI showed a mass on his right frontal lobe on the grey/white matter. still not diagnosed till the biopsy. even with the MRI and the diagnosis, aside from the IV steroids. they offered no help on his symptoms. I ran to every doctor. don’t give up DONT GIVE UP. something is not right and you know this. good luck