Acute Disseminated Encephalomyelitis (ADEM) Support Group

Life after ADEM in children


#1

My son had recurring ADEM in 2014 (age 2) and in 2017 (age 4.5). He did stop walking but with steroids he physically recovered quickly both times. He is 5 yrs old and experiencing extreme frustration & emotional outbursts multiple times a day since ADEM and can become extremely aggressive. He cannot verbalise how he feels and will just scream.

  1. I am interested if others have had similar experiences?
  2. What strategies have you found help to manage or improve emotional outbursts or aggression or verbalising emotions?
  3. What types of services or health professionals have you found helpful?

Thank you for reading…


#2

I AM TOLD ADEM usually does not come back. I still can not get a clear answer from my doctors, so you see why this is disturbing to me. once is enough for us!!! so your son had a lesion at 2, did he go back for MRI and they found another lesion?? I ask because if it happens again, I think it has a different name then ADEM. my research has taught me that symptoms appear depending on where it is on the brain/spine. also if the lesion size, as it can cause damage to brain due to active inflammation or from being large enough to be pushing on brain do to limited room. once you have treated the ADEM and IT IS NOT ACTIVE anymore, then you can work on his healing. I found a social worker who’s specializes in a practice called EMDR. they have found that EMDR works well for people from war and PTSD. a pediatric SW who specializes in this field might help. I am not a doctor but I have seen so many specialists. my only advise is to be very weary about medications. most are not for children and can add on problems. children ibuprofen, biotin, Vit D, Vitamin B12 complex, one a day chewable vitamin with immune support. I hope this helps, keep us posted…we are here for you.
Lisa


#3

Thank you so much for your response, that had been very helpful. You can see you have done your research and you are such a great advocate for your son.

I don’t want to frighten anyone but ADEM usually is once off, that’s how they explained the difference to us between ADEM & MS.

They said what happened to my son was extremely rare because in other cases if ADEM does reoccur it’s usually within a 12 month period. Not almost 3 years later like what happened to my son.

He had MRI at 2 and had lesions on brain not spine, he had a great recovery so they didn’t do a follow up MRI. Second time ADEM was onset again by a flu like virus and MRI had new lesions.

In 2017 they did tests that showed my son has something called MOG antibody which suggests he might have a predisposition to ADEM. They are keeping close eye on him and not ruling out that it can happen again has he already proved them wrong.


#4

Thank you for the topic and touching problems with behaviour with choldren after Adem. My 10 yoers old son got Adem in January this year after shingles. He couldnt move, had problems with drinking, double vision, couldnt speak. He recovered also very quickly but we noticed a terrible outbursts of aggression, being very moody and he cant cope with it. The doctors said it is because of steroids. He finished steroids couple weeks ago but the issues with behaviour are still present. He can become very angry with no rwason and screams or hides somewhere in the house. We are waiting for his mri. Now i give him vitamin C, A, D3, E, K and B. He has headaches every day and sometimes very severe with vommiting and is tired most of the time. I would like to know for how long kids have to stay at home after Adem?


#5

I was diagnosed with ADEM in august of 2016, to took doctors 2 months to find it … at the time was 37 years old, which makes it extremely rare. I was treated with a steroid which shrunk the 2.5.cm lesion on my brain stem to 3mm. The steroid made me gain 72 lbs in 2 months. But it shrumk the lesion. At the 4 month peroid i was able walk drive and work… but still to this day. I have troible with balance, a little confusion, and leg moblity.


#6

I sympathise with you Wiola, my experience with my son was very similar. When he was on steroids the behaviour was so extreme. Once he was off steroids the behaviour seemed to go down a notch but we still deal with behavioural issues. I have a psychology & neurology appointment in 2 days hoping I can learn some strategies to assist to manage behaviour.

To answer your question… my son went back to kinder gradually after 4 weeks. We started off with 1 hour visit & gradually increased time as he would fatigue. It depends on your sons recovery and health concerns he may now be dealing with. Hopefully you have a supportive school who will assist you in coming up with a plan to ease him back into it and an area where he can have quiet time or rest when needed.


#7

Thank you for sharing your ADEM experience WillC. I also sympaththise with you as it took us about 2 months of back and fourth from doctors and hospitals until they came up with ADEM diagnosis. It is such a frustrating and emotional time. I hope you have a strong family / friends network that could support you through this.
I appreciate you sharing the symptoms you now feel, as I sometimes wonder if my son is experiencing pain when he randomly screams but cannot verbalise what it is happening.