Acute Disseminated Encephalomyelitis (ADEM) Support Group

Before and after of my 4 year old now 5 year old


#1

Diagnosed January 2018

My daughter was diagnosed January 26,2018 but fell sick December 26,2017 took them a while to figure out what was wrong with her! Since being diagnosed and discharged from the hospital February 2018 she has had 8 hospital visits with flare ups almost one a month seems to be about a week after ivig treatment (she gets treatment every two weeks) her symptoms usually involve clumpysness, blurred vision, vomiting, headache, eye pain, fevers of over 100, seems to be the same symptoms every time. They just keep giving her more treatments and more ivig treatments every time she ends back in the hospital! It’s very frustrating to keep medicating my child and not have answers why she keeps getting so many flare ups every three weeks. Wondering if anyone has had flare ups this often and if any one has had any other treatments done or has any information to share with me?!


#2

How did they figure out it was ADEM…?


#3

Hi, I am sorry about your little one. My daughter also had ADEM, she got it at age four and it also took over a month to diagnose her - I blame this as part of the reason her recovery took so long. Even with an improved MRI she had for a year following: constant fevers, confusion, barely ate, she wet herself and her blood work would always show inflammation. Does anything seem to trigger your daughters flare ups? Have they tried steroids? I know some children need a long taper of steroids. What our Rheumatologist in Boston advise us was to basically put our daughter in a bubble for 6 months. He said her brain was on fire and now it was still smoldering and the only way to completely put it out was to give her immune system complete rest. We pulled her from preschool, limited places she went (like no indoor play areas) and brought hand wipes everywhere. I also started her on a DHA supplement after reading studies on it helping people with MS, a multi vitamin and a probiotic. He also said if she had another episode to get an MRI during the episode. We did the months of rest/relative isolation and knock on wood she was able to attend full day kindergarten this year without a single fever/flare. Recovery is possible!


#4

I can tell from MY experience. I got ADEM at age 30 y.o.
What helped me the most was plasmapheresis (Through arms and not neck). I’m not sure if this treatment is done in 4y.o. kids, but worth to check.
Good luck!


#5

By the way - did it start after a vaccin or illnes?


#6

Thank you for reaching out.

I had 1000mg of steroids every day for 3 weeks. That helps me I was 36 when I had it happen.


#7

My 4 year old baby also face same problem .He has one IV many time as you say .(al most 7 times)
Don’t worry keep pray God will teach your baby
With god help all treatment were showing good results he is going school look like he healthy but his hearing were loost 100% when we start treatment now 30% recover d