Acute Disseminated Encephalomyelitis (ADEM) Support Group

What can we expect?


#1

My daughter was diagnosed within 2 days of showing symptoms. At first they thought it was viral meningitis. When they did the MRI thats when they saw the lesions in the brain. I would like to know if she knows who we are. She is aware now but not speaking. She is very aggitated but calms when we soothe her. Does she remember all of us and who she is or does she have to learn all this again.Shes eating already and drinking from a bottle. At first she couldnt support her head and move her left arm. She can support her head now and sit up with assistance. She cant get all the way on her own yet. Her arm is moving now but shes not really manipulating anything yet. I know its only been 6 days but I was hoping for more progress. Dont get me wrong I'm so happy for these little changes compared to when we went to the ER. She is on steriods now and they did the IVIG right away. I just miss my baby girl. I want her to look at me and smile and say Daddy! Will she have to learn how to speak all over again as if she was an infant or will words come back to her gradualy on her own?


#2

Hello,

I'm terribly sorry to hear about your daughter. While every case is different I can share my own experience and hope that it provides you some answers. Your daughter seems to be doing very well in terms of progress after 6 days.

My son, Matt was diagnosed last March and spent almost a month in hospital. Once he regained consciousness, after about a week, I could tell he knew exactly who I was. It was about 3 months after diagnosis and twice weekly speech therapy that he was able to start to talk again. His vocabulary and understanding was all there, but due to the positions of the lesions he lost control of his tongue and facial muscles and therefore were not strong enough for him to produce sounds. He is able to talk now and has improved drastically over time. As Matt's case was very severe he still requires an orthotic brace to help him walk and still has weakness on his right side. He is at school and holding his own now, which we never thought would happen 11 months ago.

There are many cases of children walking out of the hospital after a couple of weeks without any significant signs of anything having happened. I hope this true for your daughter.

Please feel free to ask any questions you may have or just chat about how your daughter is progressing.

My thoughts are with you and your family.


#3

Hi Dad. I'm sorry to hear about your daughter, but you're right to celebrate the little improvements. Over time I hope your daughter comes back with a full recovery. Matt's Mom is correct that every case is different but it sounds like your daughter is doing well all things considered. If you have access to PT or OT then I would try to get your daughter inpatient care for as long as possible with your insurance. We did 5 weeks of inpatient rehab and I think that had the greatest impact on my son's recovery. He was like your daughter, unable to speak or move his body, and had absolutely regressed to the point where he was back in a diaper again. This is quite common. He also was easily fatigued and more emotional than normal (more crying, easier to upset). If you see signs like that then don't be alarmed, it's part of ADEM, and hopefully something that will ease over time. Since his ADEM episode he has done so well, and 3.5 years post ADEM my son is in first grade and holding his own in class. Hang in there, and let us know how we can help you. Ken


#4

So sorry you are going through this. When my son was ill- he was misdiagnosed as well and untreated for over a week. He had steroids, plasma exchanges and ivig. Once he started recovering he went from no meaningful movement, unconsciousness, tube feeding etc to being well on his way to recovery in about two weeks. He started moving first (gross motor) and then talking - then as he progressed his fine motor and coordination improved daily. He was discharged from the rehab hospital about a month after diagnosis and started school two weeks later. His recovery has been complete. He skis, runs, gets into trouble, goes to school with no assistance. I hope things go the same way for your daughter- it is possible:)


#5

I am so sorry for what you are going thru as a parent it is a nightmare. Every case is different like previously said but most probably your daughter will recover 100% My son did great, he was 9 years old and was out of the hospital in 8 days seemingly back to normal. I wanted to believe so but the dr kept telling me "it takes longer, it is a slow healing process" it has been 8 months now and he is back to normal except a few headaches and double vision that we now don't know if it was happening even before ADEM I remember one of the first alarming sign was that I would ask him what my name was and he knew but couldn't say it he would get tired of thinking that much even and then I would ask him the firs letter of my name and he got it right and fast, he was rapidly deteriorating. Thanks God and IVIG within 2 days he was talking normal and he really never stopped walking or anything he was just so tired and wanted to sleep all the time and I mean literally not even eating, he would get up only to go to the bathroom. Please let us know how your daughter is doing. Hope she gets better soon.